Wonderfully Made...

Birthday Girl!

2011-07-15T13:21:00.002-04:00

You know I wouldn’t miss updating you today. Baby girl is 3!!! Yes, three!!! To think we are here at this point is fantastically unimaginable. Praise the Lord, Alyssa is stable, happy, and very much an essential part of our family. But you know all that. What you may not know is that this is the year of transition for Alyssa and it frankly it already has been such for our entire family.
Once again I find it difficult to fully express the deep sense of appreciation we have for the early intervention services (birth to age 3) provided through (mainly) the Cerebral Palsy Association. Their services came to a close this week. This means the PT, OT, teacher, and clinical nurse that have worked with Alyssa pretty much since she was an itty bitty butter bean bid her a fond farewell. Not only did they treat Alyssa, but they were so supportive of our family~ helping me to grow as a special needs mom. They were great listeners, provided guidance, support and more. Most importantly though the left me {us} with the sense that they each truly cared for our girl; that above all else has been meaningful.
Not one of them placed limits on Alyssa’s abilities or potential but challenged her and encouraged her to move forward and work hard. God was good in providing each of these individuals in Alyssa’s life, because not all therapists, clinicians would facilitate the needs of a baby-toddler (whom isn’t expected to be much by definition of her diagnosis) in such a resolute albeit loving manner. It went beyond just doing their job; they made me feel like they genuinely wanted to set in motion the thought rather the action of Alyssa can do and will do…truthfully they did just that. These ladies came into our home weekly, and participated in helping to make Alyssa stronger, taught her how to play, and manipulate toys etc. They did with Alyssa many of the things doctors told us she would never do! It wasn’t a concerted team approach outlined with goals and a treatment plan that made the difference; no these are amazing therapist, women who have cultivated approaches that in meaningful ways with personal style did promote growth-strength in a child {and family} beyond expectation. Thank you Kris, Patti, Francis, Kim and Robin more than words can say THANK YOU!!!
We could foolishly focus on the “failures” of Alyssa’s body and mind giving way to flawed notions that Alyssa is less than because she isn’t the emblematic 3 year old. Alyssa doesn’t talk like a typical 3 year old; she babbles like a 9 month old. On her own Alyssa doesn’t sit up for very long, and can’t stand, she needs support to do these things the average 3 year old would do. Unlike many other 3 year olds, on this her birthday she won’t tear through the wrapping paper to see what gift lay in wait; rather with expectant eyes will watch her siblings do it for her or with hand over hand assistance try it herself. To dwell on what could have been is a waste of energy.
We’d rather celebrate the gift of a daughter whom Christ is using to teach us faith, humility, compassion, patience, courage and most of all love. (Psalm 25 1-2,4-10) We will celebrate her engaging smile, joyful personality, and her squeals of delight. We will sing with her, play and in the end enjoy all the nuances that make her dear to us. In three years Alyssa transitioned from a newborn labeled incompatible with life, to an infant hospice care patient destined to die; to a medically fragile baby in need of multi disciplinary services; into a medically involved toddler and now a special needs pre-school child. As a Pre schooler, she will receive services through our local intermediate unit. This means new people to impress *wink*wink*. One thing I am learning in this journey is that your child has to have a willingness to prove herself to others, and Alyssa does. Alyssa will need to show her stuff to this new group of supporters and again break the preconceived notions attached to her diagnosis/cognitive level. I will at another time explain the particulars of how preconceived ideas affect a child with cognitive and physical issues. In the meantime; Folly has no place here, she is busy trailblazing and we are busy trying to keep up.
Today some people will assemble in eagerness for a fictional story about a young man who may or may not “save” his “people” from the evil that surrounds them. There are those who celebrate this fictional young man for his remarkable character; they revere his power and abilities even though throughout this illusory tale he is shown to be faulted; at times selfish and short sighted. I admit, I too have taken pleasure in the entertainment of the unfolding fairy-tale as it is quiet a story. Today chronicles the end of his journey whether he succeeds in saving his people or not his story ends. Anyone of us can witness the recounting of this story for about 10 bucks or so at the local Theater.
Today Alyssa’s birthday can highlight another story. A true account, the story of Jesus; for His power, His goodness, and abilities are evident in her miraculous life. For FREE you have already witnessed what Jesus did and benefitted from His saving grace. He saved His people and throughout his journey remained faultless, caring, and inspired notwithstanding He died so that His people could live and yet his story continues. As we celebrate Alyssa’s birthday, I cannot ignore the fact that God the author of life continues His story through every breath she takes, and every memory we make and in every heart that chooses to embrace in faith what is. What is, is this: I praise the God of grace; I trust his truth and might; He calls me his, I call him mine, my God, my joy, my light. “Tis he who saveth me, and freely pardon gives; I love because he loveth me, I live because he lives.” ~ Horatius Bonar
HAPPY BIRTHDAY ALYSSA!!! We love you!
By the way Alyssa is now a whopping 28lbs is 2’ft 7” tall. She is wiggly and giggly. Today of all days she has started with a summer cold (sneezing runny nose) Please pray that she overcomes this easily and quickly. Alyssa is a few weeks away from her major (VEPTR) back surgery (to correct her scoliosis) and we really don’t want to have to reschedule or have any other unnecessary complications. I will be able to update more as August approaches. We thank all of you who continuingly keep Alyssa in thought and prayer. Love to you all from Alyssa and all of us!!

Happy Easter!

2011-04-24T21:36:00.006-04:00

HAPPY EASTER!!

It certainly been a long winter! Since January Alyssa has been managing and getting over some difficult respiratory concerns. The last being just a week ago. Thankfully we have the equipment to mimic a lot of what the hospital would do and her doctors provided clear instructions and made themselves available when questions arose. We are now glad to see the breeches of sunlight and feel its' warmth on our backs. Best of all, Alyssa is well and all smiles!

The past few months varying members of our Trisomy 18 community have been dealing with chronic health issues with little resolution, ongoing sickness with viruses, and sadly the loss of several little ones. It's difficult to express the level of respect I have for families that with grace and love prepare to welcome a child they know ahead of time will likely be born "sleeping". I often think boy we had it "easy", Alyssa's diagnosis was a surprise for us ( we did not have certain stresses that a diagnoses in utero may bring on). Simply put the courage and commitment a mother and father (and family/support system) take on, to celebrate the life within the womb through the birthing process, and upon that child's arrival whether his eyes are open or not...is beautiful. I don't want to minimize that very real guttural experience to not see the light of life in your newborns face or seeing a life extinguish shortly after birth. However as a bystander, with a child whose own journey is fragile I am encouraged by their strength. Through their grief they found joy, in their hope love flourished, and because of their grace many have been humbled. These babies regardless of their time here on earth enrich the lives of those who love them and those of us who come to know his or her "story".

As a T18 parent, hearing of several losses in a short time period it is difficult emotionally. Especially if your own child is dealing with a health stress's like frequent hard hitting respiratory issues. This is when it helps to talk with other mothers (fathers, caregivers). Not only is it nice to be uplifted by someone else, but it is very healing to lift someone else's spirits up. The ability to share information, or experiences goes a long way. If you are coming across this blog and know of a family that has a child diagnosed with Trisomy 18; please let them know they are not alone!! We are out here and have a rapidly growing kind-hearted Trisomy 18 community. In fact a Trisomy 18 mom is creating a map to indicate where various families are located; in hopes that support can be found not only on-line but locally too. To get added to this map or if you'd like more information; please contact Jill at southerngirl72j@comcast.net

On a very upbeat note, yesterday we along with 3 other Trisomy 18 families were able to meet face to face at an event hosted by Variety Club of Philadelphia. This was a day at Sesame Place for families with special needs kids, and we 4 families decided to make the trip. I am still getting my mind around the fact that all our kids were there. When I have permission from all the parents I will post pictures, but the oldest was a cutie-pa-tootie 5 year old girl, followed by our star Alyssa at 32 months, next a sweet girl at 28 months and an adorable 24 moth old boy. Each of our kids were as different as could be as far as health concerns, a milestones but then again there were some commonalities too. It was just great to meet!! We hope to do it again and add to the group as we know there are others out there not to far away.

So that's been our month in a nutshell. Miss Alyssa despite her repeated sickness has kept up her weight!! She is becoming more active with this increased weight, kicking and rolling more. She has picked up a size or so in clothing and had to have her back brace refitted. We are on the track of planning surgery for her scoliosis, that is a blog segment in and of its self . Our hope is that this will be an uneventful spring and summer health wise and full of fun and smiles. I'll post some additional pictures of our day to day; until next time!!

2011-03-21T21:27:00.006-04:00

Alyssa's first Phillies game! They played the Mets and won!! She loved the noise of the crowd, the lights and watched the Phantic do his stuff. It was a blast.

As you know purple is her signature color and anything with butterflies we love. So when having her AFO's made we chose just that! The cute lite up sneakers were a steal at Payless and just sassy enough to meet our standerds. Alyssa isn't walking but she wears her shoes when in her stander and walker. I like her to wear them on and off just to get the "weight" of wearing shoes, as a way for her to have imput on her legs and feet. It's cute to see her kick up her feet!

This inexpensive walker is a favorite spot of Alyssa's. She can stretch out her legs and play. It isn't as confining as her stander (which we love as it serves a greater purpose.) This walker allows Alyssa to hang out. She will make small pushes in it. We like that the seat is extra deepwhich gives her support.
Alyssa's dad put the entire walker on a dolly. It gave the extra few inches we needed as she was getting tall for the walker ad better wheels for mobility. The original walker wheels seemed to get stuck. This creative fix, gave the walker addded life, before passing it down to her little sister!

Happy New Year!

2011-02-05T11:35:00.015-05:00

Alyssa wearing her new big girl glasses

Okay a late new year greeting, but it is still the dawn of a new year! I can't believe that it's been about 4 months since last checking in, although I do have a few good excuses ( I think). Today the older kids are out of the house and the youngers are sleeping which has provided that golden opportunity and then I read my e-mail and got an extra push of motivation and here it is:

Anonymous has left a new comment on your post "A pregnant mom whose baby has Trisomy 18 is lookin...": I think it is a horrible and very SELFISH decision to put a helpless child through all the pain and suffering with a disorder like trisomy (of any kind). Losing a child is painful, but prolonging agony is even worse. Shame on you all.....

Before I give an update on Alyssa I want to comment to "Anonymous",: There is a bitterness and hint of anger in your message that I find inappropriate. One of the reasons I blog about my Alyssa's condition is to dispel many of the shortsighted and incorrect documented medical journals etc. regarding Trisomy 18. Also I hope to edify the medical community about what it is like to live with/care for a child with T18. Ultimately though I want to encourage other parents/families on this journey or about to embark that there is hope and much to be thankful for when a precious child (in utero or in the world) has T18.

Alyssa leads a regular life similar to my NON T18 kids. Occasionally Alyssa will have an experience unlike my other kids, such as a surgery. This is an experience she shares with many kids managing special needs (like Cancer, SMA, Ehlors Danlos)and it is a small part of her life. The bigger part is filled with smiles, laughter, friends and love. Alyssa is a happy kid. As for me, a T18 mom, I'll quote Horatius Bonar "I praise the God of grace; I trust his truth and might..."

Shame is the least emotion that I feel in regards to raising Alyssa. I could provide a list of many other emotions but if you READ this blog and/or view our pictures/videos..it is obvious that love, joy, and gratitude top the list. I prize the privilege of prayer and will pray for you. I will pray that grace and understanding will set up shelter in your heart. That you will be humbled and released from the pain you harbor. It is obvious you are speaking from a world of hurt, my you come to know God's saving grace.

Since I last posted we did welcome a new little one into our family. In October Leah Faith was born. True to the nature of our family we had a little drama surrounding her birth. While I labored and gave birth, her Dad ~ my dear husband~ decided to jump ship! That's right with the exception of the breaking of my water, he missed the entire labor and delivery due to having a heart attack. Providentially he was at the hospital that morning otherwise it may have been a fatal heart attack. Thankfully both he and baby Leah are fine. My husband feels much better now AFTER the heart attack and the placement of some stents; than he did before. Now he has a normally functioning heart. Since October we are making lifestyle changes to promote a heart healthy lifestyle for not only my husband but our entire family. I encourage you all MEN and women to take time and look at your risk factor for cardiovascular disease.
(Leah and her Daddy meeting, shortly after her arrival)

I do have to mention that the hospital did a terrific job managing the entire days event. I can't write down how Topsy turvy the day was nor can I say thank you enough!! We can now put under our belt the title of being the first family to have obstetric and cardiac care simultaneously!! The cap to all of which was that a day after being released from the hospital as a post partum mom, I went back with our newborn infant to pick up my discharged heart patient husband!!(sigh)

We couldn't have moved through October and the following weeks with out the support of our church family, friends and extended family. Again it is difficult to express in written form how wonderful they each were and how they met our needs in a variety of ways. Thank you seems so small, but it is with a deep sense of gratitude and love that we do thank them for their support and help.

(Alyssa standing in her stander)

Alyssa is now 30 months old and weights 22 pounds. She continues to be a delight. In September we picked up her stander and use it routinely. She loves to stand tall! Alyssa is getting use to being a big sister. When we first brought Leah home, Alyssa was quick to check out the screaming bundle. Now she rolls her eyes at Leah, when she cries; as if to say " your still here?". They are discovering each other and tolerant of each other (insert a sly smile here). It's not easy to give up the spot of being the baby. Alyssa has really developed a love for music. So this was a musical Christmas for her. She received various music toys, she loves the maraca's and the bells the best. She is still very vocal , and routinely calls for her "dadda". Occasionally she will say "mUUUmm" or "mumma". Alyssa has an assortment of vowel sounds and baby babbling that she bombards us with on a given day, of course she is most vocal when playing with her big sister or brother(s).

Vomiting had continued to be an issue for Alyssa and in 10 months her weight gain plateaued. About 3 weeks ago,she had surgery to convert her G-tube to a GJ tube. Normally this would not be a surgical procedure however her stoma ( the site of the G- tube) required stretching; so this meant surgery. Alyssa came through with flying colors and has not had any significant issues with vomiting since!! Alyssa eats very little by mouth and now that this vomiting issue seems to be better controlled we can begin again to focus on feeding her orally too. By the way the she put on 2 pounds since the surgery~ wehooo!! She had been 20 lbs for a long time.

Currently Alyssa is well managing a mild case of pneumonia. She has finished up her steroids and working on finishing her antibiotics. We did make a trip to DuPont for this concern, she did not require hospitalization. She was seen in the ER, and after a nebulizer treatment, medication and a chest x-ray was released home. So we have been managing it here for the last week and as I said she is doing fine. This sickness came on the heels of the rest of us having strep. So we have had a sick house in one form or another for 2 weeks. I am looking forward to some spring cleaning and the summer!

(At the beach in August)

So that's been our last few months. Overall Alyssa has been healthy and making strides in her skills. We remain thankful for the time we have together as a family. Each event whether joyful like Leah's birth, concerning like Ed's heart attack or a continual trial such as managing T18 issues; I am gaining a deeper understanding of my value and worth before God. I am forever grateful for my caring friendships and for belonging to biblically sound church as well as our families involvement in a Christian community. By the by to Mr./Mrs/Ms. Anonymous, it is true that losing a child is painful.I trust in the Lord, and His way in determining the length of my child's life. In the mean time I am thankful for his all consuming grace. I have 5 children and am thankful for each, and I do not know when anyone of them may pass. All I can do is my duty (with a glad heart) and be their mom.

Sad news from Mike and Melanie...

2010-09-28T10:30:00.005-04:00

Nearly a year ago Melanie had contacted me when pregnant and desiring encouraging support, as in utero her daughter was diagnoised with Trisomy 18. She and Mike needed HOPE and hope was something I knew we as a community could give!! The Ritzman's were embraced by our wonderful T18 community and many of you contacted, befriended and supported them as they awaited and then welcomed their daughter Olivia. The journey of T18 is so varied and we each our grateful for every moment no matter how short or long we have with our miracle child. Thankfully the Ritzman's enjoyed their daughter for 7 months however sadly Olivia passed away yesterday. Mike and Melanie I am sending my heartfelt prayers to you and your family. I pray that the Lord will bring your family comfort and peace during this time. Below I've posted (with permission)a copy of the e-mail I received from The Ritzman's on Monday, regarding their miracle daughter Olivia.

Sad news from Mike and Melanie...

Hello Everyone,

I wanted to let everyone know that Olivia passed away earlier this morning at 1:45am. Yesterday afternoon we decided to call hospice to help manage her pain. Serveral people were able to stop by last evening and visit with Olivia. At 11:30pm last evening, Melanie and I were in bed wondering whether Olivia would make it through the night. Shortly, thereafter we received a call from her nurse to come immediately. Melanie and I spent the remaining moments holding, loving, kissing, and crying with Olivia as she passed from her mother's arms into the arms of a waiting Heavenly Father.

Olivia is now completely free from the Trisomy 18 that has plagued her body.

Please pray for us as we deal with Olivia's death. Please pray for us as we help the children deal with Olivia's death.

Below is the obituary that will be in tomorrow's Lancaster paper.

Olivia Joy Ritzman, daughter of Michael & Melanie Ritzman of Christiana passed away at home on Monday, September 27, 2010. She was born in Children's Hospital of Philadelphia on February 23, 2010. Olivia Joy was born with Trisomy18 known as Edwards Syndrome. For her parents it was a privilege to love and care for her for the 7 months that God blessed them with her. Surviving besides her parents are 9 siblings: Tori, Alan, Katherine, Jacquelyn, Lucas, Elizabeth, Steven, Gabriel and Zoe Ritzman. Also surviving is a grandfather I. Glenn Ritzman and uncles and aunts. A memorial service will take place from Calvary Monument Bible Church, 1660 Mine Road, Paradise, PA on Thursday, September 30th at 11 a.m. with Rev. Robert M. Reid officiating. The family will greet family and friends following the service. The interment will be private. In lieu of flowers contributions may be made to The Fleming Foundation, c/o Mennonite Foundation Inc., 201 East Oregon Road, Suite 103, Litiz, PA 17543-7440 to help other families financially care for special needs children. Arrangements by the Shivery Funeral Home, Christiana & Paradise. shiveryfuneralhome.com

Thank you for all the prayers. If any of you have been forwarding my emails to others, please feel free to do so with our email attached. Please feel free to share any personal feed back.

Mike

I also recently learned that Mallorie Rose passed away last week. Please keep her family in your prayers too. A link to her webpage is on the side , if you would like to learn more about Mallorie Rose.

Alyssa's 5K Key Note Speech

2010-09-13T20:46:00.006-04:00

Just wanted to share (better late than never..hopefully) the speech I read at our Alyssa's 5K Trisomy 18 Awareness Event back in July. Alyssa's is doing well, she did have a serious respiratory infection that started a few days after the 5k that lasted till mid-August. Yet we are back on track. I'll be sure to update more soon!!

The Shihadeh Family (member #7 to arrive in October)

Alyssa laughing with her daddy...

KEYNOTE SPEECH:
In promoting this race we naturally shortened the event name to Alyssa’s 5k, as it just rolled off the tongue a little easier. However now it’s time to highlight the underlying theme of Alyssa’s 5K which is Trisomy 18 Awareness and the message that Hope Matters!

As many of you know once Alyssa was diagnosed the doctors offered us little to no hope that she would survive. In fact it seemed as though the instinctive drive that doctors have to solve/fix OR remedy complex issues vanished as soon as the realization that our daughter had Trisomy 18 surfaced. Their purposes then became preparing to withdrawal life saving measures and dissuade us from thinking that our daughter would be coming home. With the support of our Pastor and his wife, along with a host of friends, family and our church family we prayerfully moved through those first days and weeks; finding small encouragements and weaving together the understanding that with faith and hope we would persevere.

Much like many other T18 families the term “Incompatible with life”; surfaced early on in our child’s life The phrase burned into my brain, as I couldn’t comprehend how the medical community could so matter of factly determine that optimism was not reasonable in connection to any diagnosis; let alone one that directly affected our child. We knew of the statistics and understood the grim situation but not to have ANY hope?? In time I realized that if we had allowed the doctors’ firm assertions that our child would not survive our hope would have diminished; we would have spent our first year of Alyssa’s life waiting for her to die. Instead, because of hope we enjoyed her as much as we could.

I’m not saying that those early days were easy by any means, we (I) was virtually cut off from the outside world in order to protect our daughters health; as a simple cold could be life threatening. We did have a few scares and many concerns; because of hope we were able to celebrate every milestone; literally counting and being thankful for each day. At day 189 I realized I needed to outwardly exercise a little more faith and began acknowledging monthly “birthdays”. This phenomenon~ counting days lived~ is something many T18 families do.
Families respond to devastating illnesses in a variety of ways and if a family doesn’t have adequate spiritual or emotional/social or concrete resources their course will be much different than ours; as the way by which they manage that illness will be based solely on the medical communities opinions of that diagnosis~ and if that opinion is Incompatible With Life. Just imagine what that family might elect to do...or might not do….

When we left the hospital Alyssa was placed on Hospice and we had to wrestle her medical team in order for her to come home with an APNEA monitor (explain what it is). We were not provided any direction as to what to do if our daughter should survive b/c of course in their minds she wouldn’t. I firmly believe that had they offered us “hope” through practical measures like connecting us to other T18 families, the T18 community through organizations like SOFT or The Trisomy 18 organization, by providing updated medical information regarding the T18 vs. providing us facts over 15 years old; trust, in our daughter care providers would have been built and it would have significantly reduced our fear. Mind you we had some wonderful health professionals involved in Alyssa’s care and we are so grateful for them and the work that they do. Our goal is not to criticize dedicated nurses or doctors. We greatly value them. Our goal is to change the perception of Trisomy 18 Awareness.

The purpose of raising T18 awareness is not to find a cure; unfortunately because this is a chromosomal error there isn’t one. The purpose is to provide HOPE to other families affected by this syndrome (or like syndromes), and to change the perception of Trisomy 18 for the medical community. To this day when we go to an appointment for Alyssa, her doctors are stunned by her “good health”. Even though Alyssa is screen every 6 months for cancer, and has a life threatening lung condition amongst other health concerns; SHE IS in good general health. When we meet a doctor for the first time, the often repeated question is…Are you sure she has full T18? Do they have the correct diagnosis? Doctors are genuinely surprised to meet Alyssa. I am often asked about her condition by doctors as they want more insight.

Sadly, just like many parents of special needs kids we must be warriors battling health –providers or insurance companies to get the adequate care or resources for Alyssa. It is heartbreaking to know that lives saving medical procedures are at times denied due to a T18 diagnosis. With increased awareness to the many miracles of Trisomy 18 the level of shock of “long term survival” could be minimized and measures to increase the quality of life for a T18 baby/child could be maximized. My HOPE is that the phrase Incompatible with life will disappear, with updated research of this condition and with increased knowledge of life proof miracles like Alyssa.

As I mentioned there is no cure for T18 and Alyssa is not healed from them this syndrome. We live each day with the knowledge that our daughter is medically fragile and is “out living “her prognosis. It is our faith in God that strengthens us; it is our hope in one another and each of you that comforts us. Hope Matters.

Closing

There are few things in this world that can be considered a great equalizer to the human condition; having a special needs child is one them. It crosses race/socioeconomic/and gender lines. In our brief journey we have found that many families regardless of where they were prior; once faced with this type of situation experience similar struggles. The financial struggle to provide not the basic needs for our child but the tools that will assist our child to live a quality life. The proceeds from today will be used to assist in Alyssa’s care. There are many simple yet expensive products/ developmental equipment and toys out there that would make our day less complicated and allow Alyssa to be more independent. Often these are things which aren’t covered through insurance. It is family to family support that knits our community together and without this support; today couldn’t have happened. Our gratitude goes to Kim Small and her family, the Kaptur family, the Judge family and many other families and individuals who’ve showed their support by donating to our race today. Our family again thanks all of our sponsors, volunteers and you all for your abundant support.

Former Senator Rick Santorum and wife Karen also have a daughter with Trisomy 18. Their daughter Bella recently celebrated turning 2 also. In a recent article Rick wrote: Most children with trisomy 18 diagnosed in the womb are aborted. Most who survive birth are given hospice care until they die. In these cases, doctors advise parents that these disabled children will die young or be a burden to them and society. But couldn't the same be said of many healthy children? All children are a gift that comes with no guarantees. While Bella's life may not be long, and though she requires our constant care, she is worth every tear.Living with Bella has been a course in character and virtue. She makes us better. And it's not just our family; she enriches every life she touches. In the end, isn't that what every parent hopes for his or her child.

We echo those sentiments for our Alyssa. As her dad often says: She is a special girl we love so much and she has made our family stronger than ever. She loves kisses, hugs, music and T.V.! She is a joy. Finally before letting you go and get cooled off from this heat I’d like to express my gratitude to my husband Ed, our kids Nathen , Ethan, Jessica and Alyssa for allowing so much of our private lives to be shared. Assisting in the organizing of this event is truly humbling and healing for me as her mother. On behalf of our entire family thank you for coming out; while today was for Alyssa; please remember that it was about increasing awareness of Trisomy 18 and I hope that we met that goal!! Thanks so much be safe and we will see you next year!!

To Read more of Rick santorum's article go to: htp://www.philly.com/inquirer/opinion/20100505_The_Elephant_in_the_Room__Two_years_worth_every_tear.html#ixzz0zSaEm

Alyssa's 5K went great!

2010-08-31T23:02:00.004-04:00

If you'd like to see race day pictures and race finish times from Alyssa's 5K go to alyssasencouragers.vpweb.com The Hope for Alyssa domain is no longer available, so the aformentioned address will link you up to the site.

The race went so well and we are extremely thankful for all the support. It is hard to believe a month has passed already! So much planning went into it and bam it's over and done! We had a lot of fun and look forward to maybe doing it again for 2011. We had about 175 people in attendance and 106 race participants. Not bad for a 1st time event!!

So much more to share but will have to do it another time.

Thanks for stopping by and promise a better update sooner rather than later!!

www.alyssasencouragers.vpweb.com

HAPPY BIRTHDAY 2nd ALYSSA!! Random Pictures

2010-07-15T22:02:00.005-04:00

This is Alyssa at her ENT appointment. Since her ear canals are so stenotic (small), her doctor has not been able to see her ear drum until using this method. Alyssa is strapped into a papoose for immobility. The doctor then uses a magnifier that is suspended from the ceiling to look through while using a tiny ear spoon (my term). It's the tool they typically use to look in the ear, but it has a super small tip. I know it looks painful but I'm certain it's just annoying. Especially when you can't move your arms to swat at the thing in your ear!! When the doctor sees wax, she using the trusty ole suction machine to slurp out the wax. This is the second time Alyssa has been through this and it was great in that we learned she has good functuioning ear drums. Now all we need is an audiology exam to determine what degree ( if any) of hearing loss she has. Learning this information has been hard, but she seems to hear as she rocks out to music and will respond to her name.

Couldn't flip this one! PC acting up!! this brought tears to my eyes though. We were able to trial Alyssa in a stander!! This is the supine stander which she looked great in and she loved it! Big girl standing!! This is the prone stander. It was nice to see her up but she hyper-extended her head a bit. She still needs a little reminder to maintian a proprer head tilt. It was great to see her standing!!

Happy Birthday Alyssa! She's in her new toy, an exersaucer! It was a little overwhelming for her. Hopefully i time it will grow on her. And then Alyssa tasting the waters of her bath. She loves to have the water sprinkeled near her nose.

Wow 8 days till Alyssa's 5K run/walk! Can't beleive it is nearly here!! I hope it goes well and that everyone enjoys not only the event but learning more about Trisomy 18!!

One week and counting...

2010-07-10T00:49:00.000-04:00

So it's a few days before Alyssa's 2nd birthday! Wow!! I know I've been a little more on edge, and trying not to think about it too much. Yet this really is a milestone, a BIG one. I mean we went from counting hours of life, to days, allowing ourselves to enjoy the celebration of weeks gained and then months. Counting each along the way as big milestones and they were (they are), but to see Alyssa turning two...it's hard to come up with the appropriate words.

Foremost I thank God for this gift of time with our daughter. I know it is by His hand alone that we have enjoyed the various milestone and have been able to breathe under the weight of Trisomy 18. God has given us a great support system in each other as a family, and in various friends and extended family. These people in our lives are the tools of His grace and our tangible evidence of His kept promises. It hasn't been easy but God has used practical measures/means in our daily lives to encourage and strengthen us. The prayers on our behalf put forth by strangers and friends alike have been heard and continue to lift us up.

Recently Rick Santorum's daughter Bella celebrated her 2nd birthday. She also has full T18. He wrote an article in the Philadelphia Inquirer, that nicely framed the experience of his family with T18. Some key points he made about the battle with insurers, validation for the value of his child's life and the joy of having his daughter is a common theme for many of us. I wish I could wrap up the emotion and experience as well as he did.

As time goes on, as we balance the grief or is it fear of the unknown certain future (oxymoron~ I know) for our daughter with this diagnosis; I find more things to be thankful for! There are the hard days, like when Alyssa wakes up with a cold that seemingly moved in over night. It's difficult to see her struggling and the devil on my should whispers..."psst, this could be it. This could be the time." Or earlier this week when she woke up two days in a row having a asthma attack; and that feeling comes over my body as I rush to meet her needs (You know the feeling where half your tongue goes numb with an electric shock that travels down your back, you squirm to rid yourself of the feeling but it tickles ya' like a thousand tiny bugs)~ yea that feeling.

There are good days a lot of them many clumped together so tightly that we almost forget the thing that our daughter is afflicted with...oh T18. Like today, seeing her groove to her dad playing guitar; clapping and smiling truly enjoying the entertainment.

This blog and our caring bridge page has been a wonderful outlet too. It's great to read the response from others, very refreshing; whether it's advice, a "hello". It really brings my heart joy to get a note from another parent saying "thanks" for sharing your experience as it's giving them hope , answering questions, or boldly opposing the information that they were provided by their child's' doctor. Learning about other T18 and trying to follow their story is a great source of inspiration too. This experience can be isolating if you let it. It's not hard to get discouraged by constant need to stay on top of the various issues. It's not just the day to day care that can be wearing. It's the appointments, follow up, it's the emotional connections, it's so much that I can't even find the right words for..yet knowing that their our others out there rooting you on; walking the walk too~ it helps.

From day one well meaning friends/families; many Christians wanting to convey God's love and our human frailness will say " You know none of us are promised tomorrow. None of our loved ones, our children may live beyond today..." I know this is true, yet we are human and made in such a way to forget how frail we are or how little control we truly have..otherwise we wouldn't have dominion over this land or conquer the challenges God has put before us to prepare us. The fact is I am stuck on the notion that a simple cold could = death for my daughter with T18. That another unknown quirk as a result of her condition could = death for my daughter. While this thought isn't as overwhelming as it had been in the early days, it is always there looming. Some days the cloud of it is bigger and stormier than others, but it's always there. I celebrate Alyssa's life everyday, thankful everyday; just as I am for my other kids/love ones. The truth is though just as we love our kids equally but differently my concern for her is different. this is just something I have got to accept. At times I feel like her life is like sand in my cupped hands; the grains slowly seeping through my fingers despite my best efforts for them not too.

I recently talked to a mom who has a 12 year old healthy daughter and I commented that her girl was tall for her age. The mom smiled warmly at me and said "can you believe she was born 11 weeks early, just 2lbs and not expected to live." In her eyes I could see her going back to her daughters' birthday and she continued telling me her daughters birth story. I enjoyed hearing every bit, watching and listening to her as she relived the moments that angered her (doctors not listening or giving information), moments that caused her to stop breathing ( her daughter having brachycardia), and moments of joy (when her daughter acknowledge her presence with a glance). This experience of being in the NICU for 10 weeks before being able to take her child home, and the following months when she had a Pulse-Ox monitor and various nursing responsibilities to care for her fragile child; remained with this mother; who now has a healthy happy 12 year old. So maybe I'm not as hopeless as I sometime allow myself to think.

In all this rambling I want to mention that Alyssa is asleep with her dad on the bed~ exhausted from a day of hard work and play. I should wrap this up and start her bed time routine~ running rather late tonight!!

Today Alyssa spent time at Lauren's House (our respite provider). They were able to borrow a stander and put her in it. It was amazing to see Alyssa standing, literally brought tears to my eyes. She was happy, smiling, babbling, reaching out for toys and watching the other kids around her. She is so ready for this transition. Please pray that her insurance, once provided with this "new" information will finally approve a stander for her!!! If nothing else that her early intervention provider could find one for us to borrow~something so far has not been possible. I'll post pictures of her from today soon.

I want to post some pictures of her recent ENT visit and show how that see and then clean her ears. It is interesting. She went to an appointment earlier this week, and the doctor said "you know she (Alyssa) is getting less floppy. I mean she is really looking stronger and seems to be doing well." Hey~ we'll take the compliment! It's just funny about how low the expectations are for this kids, even if they are always outwardly voiced; they are there. Many times I don't even catch wind of it until a comment like that is made.

My daughter has potential, the author of your medical book didn't write her life. God did!

Alyssa's feeling better and back to her old ways

2010-05-26T22:18:00.005-04:00

http://www.hopeforalyssa.com/

Hard to believe it's only two months away. We continue to work hard at organizing and preparing for the run/walk. Really hoping that this event will help to make our local community more aware of Trisomy 18 and similar syndromes.

Alyssa is feeling much better! She is off supplemental oxygen during the day and has returned to her normal routine. Yea!! Lots of lessons learned with this bout with mild pneumonia~ hopefully illness like this will be few and far between. Thanks to all who wished her well, said prayers on her behalf, and encouraged me. The little princess is 22 months old!! Weehoo~~

THe common cold isn't so common for Trisomy 18 kids...

2010-05-11T12:49:00.004-04:00

Alyssa has been sick with a cold since Friday. It came on quick and quickly affected her lung function and heart rate. Her O2 without supplemental oxygen while awake was down to the 80's (70's a few times) and her heart rate while awake but resting was at 220. She had a temperature of 102.6 at the worst point. Her sleep stats were worse. We had little sleep Friday and Saturday as we tried to manage things~ we opted to keep her home and manage since we have oxygen here vs. taking her to the hospital. With the aide of Tylenol, increased nebulizer treatments, chest PT, rest, hydration and good ole' fashioned cuddling things began improving. Still sick and miserable on Monday we checked in with Alyssa's pulmonologist( a phone call ; visit to come on Thursday) and pediatrician (an office visit).

We were cautioned by Alyssa's pediatrician not to take on too much of the burden when she is sick; in case she takes a serious turn for the worse as she wouldn't want us to feel responsible (parent's guilt) The doctors said this more kindly and was genuinely concerned. So when speaking with her pulmonologist office we were given some guidelines on when we should take her to the hospital. We were within these guidelines over the weekend; which gave me a measure of confidence in being able to read Alyssa's symptoms and manage them well.

Alyssa is still recuperating from her sickness ( a cold). She is wiped out, so no therapies this week just doctor appointments ones that would be a bear to reschedule. So off we will go to them with oxygen bag in tote.

An interesting side note; on Facebook their is a large community of Trisomy families, Trisomy 18 mommies and there's SOFT and Trisomy 18 Foundation amongst other forms of support. It's great to have such a wealth of support at my finger tips~ you get the good, the bad and hope from the connections. It's hard some times because you share in the sadness of others when a child is sick or has earned his/her angel wings but there is hope when you learn of a child using a particular therapy; has gained a skill, or has been born and is thriving.

With this sickness a fellow T18 mom had messaged me on FB..cautioning me not to overlook the possibility of Alyssa having a UTI (it could be worthwhile to have a blood drawl or urinary cath.) She has never had one to my knowledge and didn't have the usual symptoms. However I did mention it to Alyssa's doctor and surprisingly I was told it is not uncommon for UTI to manifest first as lung issues! Apparently when kids with multiple heath issues are fighting an infection; the infection takes the path if least resistance, which is often the respiratory system. Since the the respiratory system is not usually the first place to start in relating it to a bladder/bowel issue; the UTI goes unnoticed for a while which can cause big problems. Who would'da thunk that? So I'm glad to know this now, even though in this instance it wasn't the case for Alyssa. It is good to have bits of wisdom stored for future use!

Alyssa has also lost weight~ this occurred before her sickness. This is the first time ever that she has lost not gained. I am sure it is due to my fiddling with her g-tube feeds in hopes to getting her to eat more orally. There is a fine line between stuffing her to the point she vomits and meeting her caloric intake. So between this new sickness and wanting her to have some fat reserve(s) I am going to re-work things again. Hopefully helping her to regain what she has lost and find a food plan that will encourage continued weight gain while promoting oral eating.

So in the next week we have pulmonology; orthopedics, and an ENT appointment.

By the way May (Vera's mom) thank you about the heads up regarding different head gear for the CPAP machine. I did see the picture of the little girl (with SMA) and was able to get the headset ordered. Unfortunately Alyssa's nostrils are too small for the smallest size!! So when we go to her pulmonologist we will see what else we can do. Very frustrating.

Another source of frustration is that Alyssa's stander continues to be denied!!! So hopefully her ortho. doctor will offer more assistance by writing a detailed letter of medical necessity.

Here's when being small isn't the best of all~ladies

Till next time~~

Oh by the way check out the latest SOFt newsletter; a picture of Alyssa is in there. So cool! It's a overall good issue too!!

Some random pictures

2010-04-26T20:25:00.016-04:00

We are looking forward to the warmer spring/summer days for more visits to the park.

Alyssa loved the ducks and the wind on her face.

Don't know if she waslooking for some heavenly intervention~ cause the spoonsfuls of apple sause just kept coming and coming.

Is that a smile through the sause?

no I don't think so?

I wanted to send a picture in Macarri's birthday card of the girls wishing her a very happy birthday. however they had other plans!! Here is a few of the 12 shots that I took Alyssa loved picking up and throwing Maccri's name sign! She did this to me several times as I just snapped the picture!!

If I forgot to say "smile!!!" They forgot to do it. She there went a few shots!

Trying to get both girls to stay still and smile was hard! I gave up :-)
Alyssa celebrating turning 2o months, by wearing her birthday shirt~

Sunny days at home...

G-tube placement just about 1 year ago

2010-04-12T17:28:00.000-04:00

Oh and by the way....

2010-03-29T21:16:00.002-04:00

Here's one test I keep on passing : yep that's right...

Due: October 2010

So this explains the icky feelings, increasing fatigue, fortgetfulness and a host of other such things. We are excited and can't wait for Alyssa to meet her new little brother or sister! Oh and the kicker now that I'm over 35 I'm considered an elderly mother okay maybe not elderly but they sure as heck make me feel like it. Anyhow just wanted to share our good news!

Quick update

2010-03-21T19:41:00.002-04:00

It's been crazy busy here at home between birthday celebrations (our older daughter turned 4!!); sickness including a bout with Scarlet fever my younger son and Alyssa's 5K preparation; time has been well...limited.

Shortly after my last update I did get some news on baby Ritzman that she was born and remained in the hospital on supported breathing. upon opening my email this evening I find yet another update: Melanie and baby Ritzman are home! Discharged yesterday, the baby is on an apnea monitor and is being assisted with a NG tube for her nutrition. Praise God! Mike and Melanie's baby girl was born on the 23rd of February, so she will be celebrating her 1st month birth celebration at home. How sweet for her and her family! I don't think the Ritzman's blog, but as I am given permission I will post updates on Baby Olivia's condition.

Sadly after my last post baby Caleb's mom went into labor and Caleb was born into the arms of Jesus. I believe he was born at 35 weeks possibly 36. I trust that Calebs family would appreciate any prayers on their behalf. I know I hadn't given much information about them as I was just meeting them myself; however in my brief contact with Caleb's mom; they were ready to ride the T18 ride. In other words that were very excited to meet and parent this little one.

Every life is precious. Every child is a child with hope.

Updates

2010-02-26T22:33:00.005-05:00

Many of you have inquired about The Ritzman family. Unfortunately I don't have an update for you. The last contact I had with the family, regarding the baby was via a general mass e-mail indicating that Melanie would be heading to the hospital on 2/23/10 to deliver the baby. I trust that the Ritzman's know that prayers continue to be said on their behalf and I hope (as I know you all do) that they will be kind enough to provide an update when able. For those of you on this T18 journey you know how breath taking those first few moments and days can be...so remain hopeful for this little one.

Another local (to me) baby diagnosed in utero with T18 is expected in the next few weeks. I hope to get permisson from his parents to share thier story as well. Until then prayers for Baby Caleb's family would be appreciated.

Another neat event coming up is our friend MaCari will be turning 2!!! Macari's mom came across Alyssa's blog almost a year ago and we've kept in contact. Somewhere in this blog there are pictures of this adorable little girl. I've got to ask her mom for more. Macari had some sickness over the winter but over all is doing really well. So take that T18!! Macari has full T18 too! Her big day is March 10th!!

Alyssa has celebrated her 19th month on this earth Feb. 15th! She continues to do well overall. We are working out some kinks with the Bi-PAP machine. If anyone knows where we can get nasal cannula's that would be compatible with the VPAP III by Resmed~ DO TELL! The gel mask is really difficult for Alyssa. I'll dedicate more time later to go into details, short-n-sweet we would love to use nasal prongs. We have heard of Nasal Air II for kids but the smallest it goes to is for a 40lb child. So we will continue to look..Otherwise Miss Alyssa is 20lbs 9 ounces and 28" long. Our little star!

Below are some older video's of Alyssa when she was between 14-17 months old. Just wanted to share them.

we continue to work on feeding orally!!

just listen to her!

ALYSSA'S 5K LOGO ART CONTEST

2010-01-27T23:10:00.004-05:00

ALYSSA'S 5K LOGO ART CONTEST

Create an awesome logo and you may be the grand winner whose work will be used for our shirts, banner and/or signs!!

The Purpose: In July 2008 our daughter Alyssa Grace was born with a genetic condition called Trisomy 18. 90% of babies born with this chromosomal abnormality die within their first year of life. Thankfully Alyssa is surpassing the statistics. To celebrate her second birthday; we will hold a benefit walk in her honor to promote Trisomy 18 Awareness. Our hope is that this Logo contest will raise awareness about Trisomy 18, as well as generate a cool design to symbolize Alyssa’s life story.

Who Can Enter: Anybody! We encourage students and teachers to get their art classes involved. Artwork may be hand-drawn or digitally produced; all work must be digitally submitted. If you are creative this is a contest for you!

Entrance Fee/Prizes: A $10 .00 entrance fee for the submission of work is required with entry. The Grand Prize winner will receive the CASH PRIZE of $250.00, an official Alyssa's 5K 2010 t- shirt and will be verbally recognized at the benefit walk. Aside from our gratitude and the admiration of your peers, the Grand Prize Winner, and Honorable Mentions will also be acknowledged on the Hope for Alyssa website (www.hopeforalyssa.com), along with a picture of their artwork.

Deadline*: Entries are to be digitally submitted no later than 11:59pm U.S. Eastern Time on Saturday, April 17th, 2010.

Submit Entries at: http://www.hopeforalyssa.com/

BE CREATIVE, HAVE FUN, WIN MONEY AND HELP ALYSSA TO SPREAD THE WORD ABOUT TRISOMY 18!

For complete contest detials and terms please visit http://www.hopeforalyssa.com/

A hearfelt plea from Melanie...

2009-12-31T09:46:00.002-05:00

With Melanie's permission I am posting an e-mail she had sent to me this morning. I did not post the family picture however if you'd like to see the Ritzman's and their beutiful family it can be sent to you privately. I told Melanie that there is a strong T18 community out here. I hope that you will raise your voice, share your strength with the Ritzman's. I only "met" Melanie a few days ago through a friend of a friend, but my heart goes right back to those beginning days with Alyssa Grace. My heart now aches for this family and the truama that they are being put through just to see the face of their MIRACLE BABY! How can this be? I don't have answers, but I do have a willingness to help in any practical way that can.~ Trish

A note from Melanie:

I know what I am about to ask is a leap of faith on all your parts. I am asking you to share a piece of your personal and private heart’s story with me, a total stranger, and a group of Doctors you don’t know. I promise I would not miss use this but a thought has occurred to me. These Doctors believe the medical statement “ that Trisomy18 is not compatible with life”. What would happen if they, as a group, were faced with your children’s pictures, medical list of complications that each of you have and are currently facing, and you child’s current ages ???? Then maybe they would see PROOF OF LIFE . Also they would clearly see a realistic view into a lifestyle of right to life.

Would you please help me?!?!?!?
Would you please network this out to anyone who has a Trisomy18 child.
Below I have attached an explanation of what is happening to our family right now.
And a current family photo of us. Melanie and Mike Ritzman of Lancaster County, PA

Well this is the latest
1st my husband sweet honey pill version
and then my right between the eyes Mother Bear version.....
same day, same stuff, & he is the better Christian than I !!!!!!

Mike's Thoughts...

Dear Prayer Partners,

Melanie and I would covet your prayers. We have some disturbing news to share with all of you. Earlier this week Melanie had an OB appointment with a doctor instead of a mid-wife. One of the questions we were to get nailed down before delivery was whether the doctors in our practice would perform an emergency c-section if Baby Joy was in distress. T18 babies typically go into distress during labor. The answer Melanie received as quite disturbing. The doctor basically told Melanie that there would be no need for a c-section because "IT" is going to die anyway.
Today, Melanie and I had an appointment with the NICU advocate and received further clarification... The OB doctors in our practice are "indecisive" as to whether they will perform an emergency c-section if Baby Joy is in distress. We will have a final decision next week when our advocate and midwife meets with the doctors to discuss our case... Please pray that the doctors will perform an emergency c-section if needed.

Melanie's midwife has been great and will do everything that she can to see that Baby Joy comes into this world. The NICU is on board and will do what they can to make sure she gets the care she needs. CHOP, DuPont, and John's Hopkins do work with T18 issues. The only problem is whether our delivery doctors will perform an emergency c-section if she is in distress.

On a positive note, we have been put in touch with 7 families that are raising T18 children ages ranging from 13 months to 23 years. This makes the above prayer request that much more distressing. We have a friend that works at Johns Hopkins and she is getting us contacts there with medical professionals that deal with genetic diseases. One of the families that we are in contact with is giving us contact information for doctors at Children’s Hospital of Philadelphia (CHOP).
Melanie and I are in a spiritual battle regarding the sanctity of life... The medical community is split on how to handle children diagnosed with T18. She has been labeled and is not even referred to as a person. She is an "IT". It appears to me that the sanctity of life only applies to healthy children.

Please pray that Melanie and I keep our "cool" and can maintain a witness through this entire process. Please pray that we will be able to find another OB practice that we can work with if these doctors will NOT agree to perform an emergency c-section. We have had a lot of emotional ups and downs.

Well, I think I have sufficiently overloaded all of you. Please feel free to ask us any questions that you might have..

Thanks for Praying

Mike

A pregnant mom whose baby has Trisomy 18 is looking for information

2009-12-29T17:38:00.007-05:00

Alyssa looking very compatible with life, Christmas morning with some of her gifts.
Can you explain T18 in 20 words or less? Neither can I and so I need your help! I just came in contact with a lovely Christian mom, who is currently pregnant with a baby girl diagnosed as having Trisomy 18. We had a long talk and this mom is on the ball with getting informed and preparing for her future little one. Melanie is a well experienced mom but is new to the world of T18. She still has questions and would love some encouragement for this journey.

I didn't know that Alyssa would have Trisomy 18 prior to her birth, so I am at a loss for helping another mom prepare. If you would e--mail me or leave your contact information I will get you in contact with Melanie. They do not have a website/Facebook. Melanie and Micheal's baby girl is due March 19th! So this makes Melanie about seven and a half months pregnant.

Melanie was recently seen by an OB in her practice and she shared with me the following experience:" He was recommended because he had birthed two Trisomy18 babies already.
I soon realized that he had just let them die upon birth and his statements to me are following: We do not need to do a cesarean if "it" has distress during normal labor"it" is not compatible with life and should just be left to die I WAS AND STILL AM ILL TO MY CORE with that Doctor's thoughts..."

Alyssa is 17 months old, my heart is overfilled with the joy that she brings to our everyday lives. I am learning more and more that this T18 community is strong. If you have information that would benefit Melanie and Micheal in their situation, please leave a message here and send along your contact information to me so I can forward it to them.

Thanks!

Christmas Photo Ops..

2009-12-29T14:30:00.004-05:00

Merry Christmas and Happy New Year ! Here are few pictures taken over the kids winter break:

The Girls

Alyssa's oldest brother and her older sister and I

So sweet!

Wonder if Jess tastes good?

Miles of Smiles

Cuteness coming and going...

One of my favorite pictures:

Definetly a Christmas to remember!

Admitted to and now home from the hospital

2009-12-09T23:49:00.003-05:00

Alyssa was taken to the ER at Dupont on Friday due to her oxygen saturation level dipping down into the 70’s. We didn’t have oxygen at home, so off to the ER we went. This was her 1st stay at DuPont. All of her care has been at CHOP with the exception of her pulmonary care. Alyssa is home now and doing well with the support of oxygen. We hope within the week to have her Bi-PAP machine working fully to her benefit. So without further ado here are the excerpts:

Alyssa and Nurse Shirley (Day 2~ feeling okay)

December 5th-December 7th : I found a computer! They couldn't hide it from me. Friday night started with me out alone, doing some Christmas shopping only to follow up with a hospital visit later in the night. To recap the last month had been relatively boring. Most of our appointments were in home. Alyssa had a few routine doctor appointments but nothing too interesting. We spoke with Alyssa's pulmonologist last week and she was placing an order for us to have oxygen and a Bi-Pap machine at home for Alyssa. These last few weeks have been filled with catching up on/organizing paperwork, scheduling appointments, following up with doctors on the phone and managing the some other thing for the older kids.

Then as some of you know, last week the stomach virus hit our household. J and E got the worst of it but we all were affected. So from late Thursday night until Tuesday sleep was just an unmet dream, laundry was a nightmare, and I was a zombie. By Thursday I thought we were getting back on track but Alyssa seemed a little congested. She was also bringing up mucus. I attributed it to the Nebulizer treatments that we've been doing for the last 6 weeks or so (that it was working at getting gunk out of her lungs). Yet Thursday night her oxygen stats were dipping lower than usual and took longer to recover. By Friday she was coughing frequently and having a little difficulty managing the extra stretchy mucus. Friday night her Oxygen stats were in the 70’s or in the low to mid 80’s and was not bouncing back to a good level 95+or staying in the 90's for long. So the zeal from Christmas shopping was halted with a trip to DuPont. Ed stayed with the kids and Alyssa and I came down around 3am. Alyssa's pulmonary doctor is at Dupont which is why we are here vs. CHOP. This is her 1st experience being admitted here. She is on oxygen now and doing better. Off of oxygen she is still low. They are thinking lung infection..More information to come. I've got to run as this area is closing. I'll update more when I can. I don't expect to be here more than a day..We will see.

Alyssa receiving her Nebulizer treatment and Chest PT.
We'd appreciate prayers for affective treatment for this lung issue for Alyssa and comfort she is just cranky. That'd we'd seamlessly get supplies ordered and delivered home for management of Alyssa's sleep apnea prior or near the time of her discharge. Also a neat lady that works with Alyssa was recently diagnosed with and recovering from Cancer treatment please pray for her recovery. Hannah (CB Hannah317) is also recovering from a recent surgery. Not to mention several friends and supports recovering from the flu, stomach bug and other fickle colds prayers for them to heal and return to their activities would be welcomed too. I keep promising to update a few different events and I really want to/need to do this. Prayers for me to sleep better so I can get better organized in thought and action would be great. Aside from the recent setback over all we are okay. Hope you are too. Happy belated Thanksgiving.
Well we are still at DuPont. My understanding is that they want to wean Alyssa off of the supplemental oxygen and then watch her to see how she does. She has a non-specific lung infection... in other words they know what it's not: RSV, Flu, and Pneumonia~ which is great. Yet without a clear idea they are shooting in the dark on treatment. Alyssa is on both oral steroids and antibiotics to treat this infection. In addition nebulizer treatments w/Chest PT every 4 hours (I do it at home 1-2 times a day) along with the oxygen. Its working as she is bringing up lots of gunk. They use a Yankour (a suction tube for the mouth) to get out the secretions other wise she swallows it and then vomits some time later. Funny I was talking to Kim (Alyssa's Clinical Nurse at home) about the Yankour the other day. Three days ago I had never heard of it or seen one. Now I'm ready to take it home and use it! We know Alyssa has obstructive sleep apnea so I think there isn't a rush to get her out till we know when we will have oxygen and the Bi-PAP at home. She'll only need it at night thankfully. Thanks for the continued prayers. By the way Ed is doing a great job wrangling the older crew. Almost wonder if I'm needed! He got them to clean; they went out on the town, sounds like their having a blast with their dad. I'm glad that we are able to "tag" team like this that IS half the battle. Okay till later~
Alyssa loved her therapy and would often fall to sleep during the session.

Okay the what- if's are starting in my head...what if this is pulmonary hypertension? They are treating this as a infection because everything else came back okay...so what if this is PH? I am looking forward to the break of night with dawns light…Which means rounds will soon start. Then I can talk with the doctor and get some facts: asleep with O2 Alyssa is at 97% dropping occasionally to the mid/low 90"s. Without she is all over the place but not lower than 84% unlike at home Friday when she dropped to 71%
Now either b/c of less intake or I don't know why Alyssa isn't wetting her diapers but is having loose stools. So she may need to be hydrated...how this will all play out...You got me! I am trying to stay present in the grace and gifts from God. Even though I fall short he does not. Prayers that Alyssa will "bounce" back would be great that whatever is going on will be well managed and resolved allowing her to continue making strides...Sorry for the choppy nature of this entry on a strange hospital PC/TV and it isn't easy to type or see.. I hope this makes sense enough to read. More later
On this PC/TV again!! (I’m) feeling better now Alyssa and I both. We enjoyed a visit from Nancy and Tammy. What a nice way to pass an hour or two chatting' it up with friends. It definitely was refreshing. When I got back to Alyssa's bedside, she was just waking from a nap and ready for her lunch. I had an opportunity to talk with the Pulmonologist and Alyssa does not have pulmonary hypertension. However many issues that she is dealing with can lead to it if not well managed. Alyssa has a infection and it is clearing. She will come home with oxygen. We will find out the usage of it tomorrow and she also meets with her Pulmonologist tomorrow before we are discharged.

Marta I do suction Alyssa nasal suction but never done oral suction I was told today the way you had mentioned is good for kids that have a sensitive gag relax, which Alyssa does? I just have to get comfortable with it all.

Lord willing, we will be home sometime tomorrow. Thank you for staying updated and support. It's nice to have a place o spill my thoughts, reflect, get encouragement and get back on track. It's not easy, but this is how it is and I thank God for continual presence. To take a thought expressed by Elizabeth George: "..With a heart full of faith and hope, with God by your side and by his great grace" I can love him no matter what b/c he has seen and does oversee every detail of my life. At 2 or 3 am it's hard for me to stay focused on this fact, multiple sleepless nights make this promise feel distant, ongoing trials cause me to wonder but deep down I know it to be true.. I've got to trust and obey. Next time I hope to be updating you from home! Tammy and Nancy your visit meant so much thanks you for coming down!
We are home! Alyssa and I arrived safely home from the hospital yesterday afternoon. She was released with oxygen and as I am learning with hospital discharges once you come home there is still "stuff' to do to meet the doctor’s orders. After reaching home the DME (Durable Medical Equipment) Company came by with the oxygen tanks. We weren't totally overwhelmed with the idea of having this in the house as we had some when Alyssa was on Hospice service. The difference is this time we are using it, which is overwhelming at first. Prior to the hospital stay, we were I the midst of re-arranging Alyssa's room to better organize the equipment and supplies. She was also set to graduate from the bassinet to a crib. The crib arrived while she was in the hospital so she got to take her first test run in it last night~ she loves it. We love that we can see her without having peer over the sides or under a canopy.

So we had to make room for the air-room converting oxygen machine, the 2 medium size tanks, 3 small tanks, and the pending "M" tank a.k.a the BIG KAHUNA all of which are back up tanks and/or tanks for when we are out and about. Right now Alyssa needs oxygen (and the bi-pap machine) at night. During the day she only needs the oxygen if her saturation level drops below 93. So after getting a lesson or two on how to handle the oxygen, I was out again getting medication. Finally after her night routine of a Nebulizer treatment and Chest PT ... I was able to better relax and enjoy being back home.

We woke up this morning and headed out the door to fulfill some longstanding appointments the first was for her 6 month Ultrasound : a cancer screening for Whilms Tumor and the 2nd with her Orthopedic doctor. Both went well. For fun Alyssa threw in a visit with a GI we had never met prior b/c her G-tube was significantly leaking. Thankfully we happened to be in the same building as a GI clinic, so we were squeezed into the schedule. It turns out buttons often leak after/during illness. Too much to explain her suffice to say we added another cc of water and there is improvement. We got home about 3:30 and shortly thereafter the DME Company was back this time to bring and teach us about the Bi-PAP machine. Unfortunately miscommunication, and a petite baby = not being able to use the Bi-PAP. Yep we have it but can't use it till they can secure a properly fitting mask/head gear. The respiratory therapist from the DME was concerned that the hospital would release Alyssa without training and proper equipment. The hospital therapist put the oweness on the DME Company. In the middle lies Alyssa. Thankfully the oxygen is doing a wonderful job at keeping up her stats. We also have the support of the pulse ox, and if she should need it the apnea monitor.
Tomorrow we follow up with Alyssa's pediatrician. Hopefully she will be getting the H1N1 at this visit too. On the fence about it before but now seeing how easily her respiratory system can weaken, it's a faith filled leap to a needle prick. Our hope is that it will only benefit her. Okay I'm zonked and a few loose ends yet to tie up!!Alyssa at home w/oxygen resting.

Strabismus Correction

2009-09-29T13:42:00.004-04:00

Alyssa with her big brother!

Alyssa's eyes began turning in when she was 4 months old. She was prescribed and began wearing glasses when she was about 7 months. We have noticed with each bit of assistance improvement in her ability to interact not only visually but socially as well.

She had surgery yesterday on her right eye ( eye muscle correction). Her right eye was the strong eye, until her left eye was corrected in April of 2008. After April gradually her right eye began to turn in more. We wanted to correct her strabismus (crossed- eyes) to help her get the most out of her vision field.

The surgery went well. We can see a big difference already. We'll post after surgery pictures soon. Alyssa handled sedation like a champ! (whew) She is now resting comfortably on the couch. We expect that the redness and discomfort to decrease and resolve within in a week. Until then we will spoil her more than usual with hugs, kisses and cuddles.

August had been busy...

2009-09-21T18:06:00.013-04:00

aAbove is a picture of Alyssa receiving a bolus feed for her Gastric Emptying Study. We decided to have this study performed because she began vomiting routinely after her feeds since having the G-tube. We opted for her not to have a Nissen fundoplication (This surgical procedure tightens the valve between the esophagus [canal connecting the mouth and stomach] and your baby’s stomach) when her G-tube was placed. Alyssa has mild to moderate reflux. Our hope: with proper medication management and flexible feeding rates we'll be able to better control her vomiting. We learned from the study that the rate in which Alyssa's stomach empties is within the normal range. Using this information we have made adjustments to how we feed (the rate, timing intervals etc.) Alyssa's vomiting is decreasing, I also think part of the vomiting is due to muscle weakness. There are times that a good sneeze /cough while going "poo" will bring on vomiting, to much pressure in the belly for her weak muscles to control or hold in all in. (???) It's a day to day battle. Alyssa eats some food by mouth, in which she tolerates well. Hopefully this will increase. Alyssa currently weights 17lbs and 13 ounces; she is 25 inches tall.

Alyssa saying "hello" to Dr. L prior to her MRI and CT scans. Dr. L an anesthesiologist was able to intubate Alyssa on he first go! Considering her small airway this was awesome. The less attempts means less trauma to her airway and less irritation after waking up. For her last sedation by another doctor, he made multiple attempts before deciding to go the way of a lighted fiber optic scope.

Sedation is a scary thing for us, when thinking of Alyssa's health concerns. Alyssa has had one other sedation experience and she did well, however we can't take that for granted. This time she recovered well too. My one major complaint was for the after care team. We felt as though they were rushing to get us on our way. In other words ready to send Alyssa home about 30-35 minutes after the scans, even though her respiration stats were all over the place. We had to stand our ground in waiting it out for Alyssa's respiration to return to her "normal". We use an apnea monitor and Pulse Ox machine for Alyssa, so we are aware of what her typical respiration patterns when awake and asleep, sick with a cold and well (w/T18). We know the settings, so when at the hospital her stats intermittently dipped and remained low then perked up~ they said something along the lines of oh you probably never noticed but she has slight apnea spells` don't worry, she recovers quickly...( but on at least 2 occasions it wasn't so quick). Our response "NO" Alyssa thankfully hasn't had a registered apnea episode since bringing her home last July, we know her normal and what was showing up after the studies was not it ( by the way her normal is the same for other babes her weight/size).

So she remained a little longer in recovery then typical and her stats became consistent. Could you imagine how tense/fear-filled our 1 hour drive home (longer w/traffic) would have been if we hadn't stood our ground? It sounds easy to do, but even for the most confident of people I don't think it always is; I'm just glad we were able to this time.

Below: Alyssa resting...slowly waking after the studies.
Alyssa was sent home on hospice care seven days after her birth. By three months her first hospice provider was ready to pull out because she was thriving. Also it was suggested by those reading her apnea reports to discontinue her apnea monitor because she hadn't had any episodes. Yes, this sounds great but imagine our frame of mind...most of her doctors were still predicting that she would soon pass; even her very supportive geneticist cautioned us saying that Alyssa wasn't yet "over the hump". Alyssa's geneticist strongly suggested that central apnea could occur at any moment and the chances of so didn't decrease until the one year mark. So we retained the apnea monitor with the support of her pediatrician and went with another hospice provider (that didn't frown on us working with Early Intervention as well). Now at 14 months old, Alyssa has been off hospice for five months. We still use the pulse ox and apnea monitor. Below: Alyssa during her sleep study.
Oh, what a night this was. She didn't seem to mind (much) the leads, wires or even the head wrap. She was a good sport until the nasal cannula! That was too much and she howled like I never heard her before. She got so worked up that she vomited and we had to redo all the dressings. Through the night she would rest well, then seemingly remember where she was and start crying all over again.
The sleep study was ordered by her Pulmonary doctor. Alyssa has a diaphragmatic eventration, snores a bit and again with T18 the apnea concerns the study would give us good information (hopefully). We are still awaiting results from the study.
One appointment we were able to cancel was to the pediatric dentist for the casting of infantile dentures. JUST JOKING!!! This is a running joke in our household as our kids teeth rather late. Alyssa takes 3rd place (out of 4) as her rice grains popped up by the end of her 13 months. Can you see them? Yes two teeth came up and her gums are swollen, so as with her older sibs' more teeth may come in quickly. You know, I wasn't sure if I was going to see our girl with a toothy smile. Even though they are just peeking through it is a welcomed milestone!!
Below: Dr. A holding Alyssa. He's meeting her for the 1st time since delivering her last July. Alyssa seemed to remember him. She was talking his ear off, I suppose updating him on what's been going on this last year? When taking the picture I think Dr. A obliged because he remembered delivering her but I don't think her fully remembered all the events of that night. Not until after putting her down (commenting how chunky she is) and taking a glimpse of her chart. His back turned to me, he did a quick half step and said something like ..ugh given her diagnosis this is something hugh? I just smiled and said "yeah." He then took another look at Alyssa smiled asked her age again and upon my response slowly shook his head side to side with a broad smile.
In addition to the above appointments: Alyssa had a repeat visit to the Cardiologist, an annual re-visit to confirm she is cleared cardiac wise. After a brief scare/miscommunication and a repeat echo; we know she does have an innocent heart murmur and is otherwise heart healthy. Dr. K. a surgeon was consulted for her diaphragm issues and she was given the all clear. At this time surgery is not needed. She was also seen in the seating clinic at CHOP, for a feeding chair, stroller and bath chair. She was re-evaluated by her eye doctor and Alyssa is scheduled for surgery. She will have her right eye strabismus correction. This was her strong eye, but after correcting her left eye; the right is not turning in. She was seen by her nutritionist too~ whom would like to see more weight gain ( we are trying). Alyssa still has stenotic (small) ear canals, so we are going to try hearing aides. We waited it out, as this was suggested back in May (?) but we know Alyssa can hear (she does have some loss per her ABR) and wanted to give her canals time to grow. Since they haven't and she is making sounds, is interested in the world around her we want to further encourage this so we will try the hearing aides. Wouldn't it be neat if the mix of the hearing aides and some speech therapy would increase Alyssa's verbal skills? Her ENT visit brought a close to Alyssa's August appointments; told ya' a busy August!

Catching Up

2009-09-15T18:00:00.007-04:00

Alyssa has been changing leaps and bounds in our eyes. Lately I've been so focused on the sad and difficult part of T18. It is time to catch up on the things that bring joy and encouragement in this journey. We are so thankful that Alyssa is enjoying being apart of our family as much (we hope) as we enjoy her.

The bright spots in our day come when she does her dastardly dog laugh (ya know~the raspy hehehehe) when tickled or if she thinks she's going to be. Yes she is anticipating the actions of others, when lying on her back she'll pull her right leg in and crosses her arms over her chest to protect herself from prying fingers, all the while smiling a wide open smile laughing. At night when the house is still, she'll babble and coo, we've had many late night conversations. I love staying up just to hear the sounds I was told would not come. Alyssa loves to play with her toy bar, batting, holding, trying to suck on the hanging toys. She sits/lays in various positions to access the toys to encourage skill development.

According to Parenting.com The 9 major physical milestones are :

Smiling (8 weeks): Alyssa was on target with this. She surprised her geneticist, when flashing her a smile at an appointment.Just to confirm it was a social smile and not an "accident" Alyssa did it several times in response to Dr. S.
Rolling over (2 or 3 months) Flipping from back to front often takes until around 5 months because it requires more coordination and strength. Alyssa began rolling to one side at about 4 months and to both sides by 7 months. Her roll to the left is stronger. She is not flipping back to from yet. She requires guidance to get a full roll, this is just the placement of her arm so it doesn't get "stuck" under her body. She is still learning how to tuck properly and not to arch incorrectly. She does love to roll, we work on it often for this reason.
Grabbing (3 or 4 months) Alyssa began grabbing about 6 months. However wasn't truly consistent and focused until about 8 months. Again this is a skills she continues to develop as she favors one hand/side over the other.
Hugging (5 months) Alyssa was a snuggler from the day she was born, but hugging with intent...hmmm not yet. Due to her low tone it was hard to hold her upright facing my body without support. So she hugged me in this position whether she wanted to or not. In the last 2 months she has developed enough head control that I can hold her in this position without additional support, so maybe I'll get a natural hug real soon.
Playing peekaboo (6 months) Alyssa loves peak-a-boo. It has been such a good game for her. She anticipates the cause and effect actions of the game. It'll be more fun for her as she develops skills to take the game to the next level( sounds like I'm talking pro ball).
Sitting up (8 months) Alyssa is beginning to sit unsupported. She can do so briefly intervals of 45-50 seconds between repositioning. In other words she sits, she collapses, is helped to gain good positioning and repeats until tired. This is wonderful to see, as once again we were told this or much of the other skills she has gained were not to be expected.

Alyssa's physical skill development is in the range of a 4-7 month old~very scattered. Some of this is due to muscle weakness, it is difficult for her work against gravity. When things are modified she is able to do more in one position than in another. We've noticed that with weight gain, there is skill gain. As we address her vision issues positive changes occur as well.

Alyssa's social development my guess is around 7 months. Her speech development is delayed which may be related to hearing issues. We'll see how this turns out as we address her hearing. Alyssa loves to watch people, smiles, mimics, and likes bright colors. I have been playing her a mix CD of Classical music and baby babbling/cooing ( we made it ourselves). The hope: to inspire language. Who knows the true benefit, but she does enjoy listening to it and will babble back to her recorded "friend". In the last few days she has begun to babble more to people outside of our household, it is nice to see her connecting to the world around her.

Alyssa receives physical therapy and occupational therapy each 4 times a month. She also has specialized instruction (learns how to play) 2 times a month . We would like to add speech therapy. Crawling (6 to 10 months) Pulling up (8 months) Walking (10 to 18 months) Alyssa at 14 months is not doing any of the above now..but ya never know~ it could happen someday. Parenting.com indicates that there is a 2 months window in either direction for skill development. If the child is beyond that 2 month period, she would be considered delayed. So yes, Alyssa is delayed. I do see her making changes/gains everyday and that is what matters most to us. Alyssa is 14 months old and delayed as much as a year behind her true age. Yet she is happy, interactive and much loved. Not bad in our opinion.

Why then do we do what we do?

Easy because we love her and like anyone of our other kids we want her to aspire to her full potential ~ whatever that maybe. I am confident that we will know when enough is enough. Alyssa has a fiery personality and I have no doubt that she won't hesitate to let us know her limits.

Showing off

2009-09-14T00:02:00.004-04:00

A 6 minute video of Alyssa during various PT and OT sessions from the summer. Alyssa is steadily making progress. More updates to come!!

First Day of Preschool

2009-09-10T10:15:00.010-04:00

Today is my older daughter's first day of preschool. Wow, she's on the younger side; a mere 3 years old but we thought it might be good for her considering our current lifestyle. I am sure she'll come to really enjoy it, she loves learning and is a social butterfly. No tears this morning for the drop off, quiet an accomplishment when this is her first school experience aside from Sunday school.

I said no tears right? Well not on her end nor on mine until I got home. I think is was a long overdue watershed. A part of me crying because she's growing up but there was more emotion connected with it. I felt somewhat caught off guard, heck really off guard by it. The first few days/weeks after Alyssa's birth I cried A LOT. My body and/or minds way to adjusting to things. Seriously I cried at the mention of simple things like a word~"blanket"~ ooohh Alyssa cuddled in the same blanket as "X"~ and the tears came. After a few weeks of this I was fed up with the crying and willed myself to keep a stiff upper lip.

I was still emotionally connected but wanted to face the world with dry eyes and a measure of resolve. Faith directed resolve but with less or hopefully no tears. It worked too. There was the oddball ocassion like, Alyssa coming out of surgery A-okay and Celebrating Alyssa's first birthday that I did cry but then who wouldn't?

Today though I did one of those gut wrenching balled on the bed, can't catch my breath either pass out or gasp for more air cries. You know the kind that rocks your body and soul to the core. It was a good 10-15 minute water shed; and then I stopped wiped my eyes and tried to decide what to do with the rest of the "me" remaining before having to go pick up my girl.

In a small home with 6 people, there isn't a lot space for alone time; let alone time for alone time. Never would I want my kids to see me that vulnerable. So now I get the merit of Preschool. My mom's guilt for sending my oldest "young" daughter out in to the wild lands of Christian Preschool has diminished.

Bottom line even though I didn't want to acknowledge it: I needed a good cry. By the by Alyssa slept soundly the entire time. Thank God for the big and small things~

Inspired by the Botts Family

2009-09-03T12:00:00.004-04:00

"Better, far better, with Christ to be, living and loved through eternity."~Poet Unkown ~

Right now I'm driving down the T18 highway in the backseat of a friends car...Brenda Botts. Gods at the wheel and Brenda along w/Bri (Jerry and Ashley) are alongside in the passenger seat. The view from the back is alittle obstructed but from back here the road feels hilly and narrow and it's hard to see where we're being led.

I'm feeling motion sickness and wondering how I can get comfortable. You can see this isn't the most comfortable ride for them as a family, but they are doing what they can to make the most out it. The Botts family, they are enjoying their togetherness. They are glad to have a trusty car, and a reliable driver. They're happy that they can focus on what's happening in the moment and allow their driver to worry about what is ahead. They aren't even wearing seat beats! Trusting that God will get them to their destination safely.

Me, here in the back.. I want to lean forward and strap them in. I want to ask the driver to slow down, or stop for bit so I can catch my breath. But I'm just along for the ride, a stow away waiting for the rise of the next hill, dreading the decline..wondering if there will be a clear view of what's ahead.

The Botts family have been kind in letting me stow away here in the backseat, they share bits of their front seat treasures with me. They share their morsels of food (encouragement) and fresh water (faith in a living God), even their medicine ( big doses of T18 reality) willingly. Being back here on this trip is helping me to prepare for when it's my(our) turn in the front seat.

How blessed I am that God is sustaining the Botts family so much so that they are willing to share their experience. How blessed are they to have such a loving and compassionate God. Brenda and her family are teaching me, and are examples of how God does work within. God is good. Even when the end is near He is good.

Yesterday Brenda wrote on Brianna's blog: "Pray, pray, pray for comfort for Brianna. The time is near, very near. I guess from this posting you can tell the doctor appt. didn't go very well. Her heart has deteriorated rapidly. He said she has less than 14 days to live, that's two weeks, less than 336 hours, less than 20,160 minutes.....and that was earlier today. Followed today with in part:Bri is still with us. We are all wiped out. Last night was so bad that we were praying for Jesus to take her in his arms. There was no comforting her, even with medication. But once again our God showed mercy and opened up a room at the Hospice House (less than 5 miles down the road)...

As I posted days ago on our wndrfllymdeblog :

Last year I frantically looked up T18 to get answers. The doctors hadn't given us the official diagnosis for Alyssa yet, it was by a chance that I gleaned this was something they were looking into...after coming to honor page after honor page of precious babies held in memorial I found Brianna Botts. A baby girl (16 month old) living with T18! I watched the news clip of the Botts family story, saw the pictures of this cute little girl and thought "wow, look at that miracle." I contacted Brenda right away, and in what I've learned is her innate kind way..she reached out to me immediately. Brenda has guided me along this journey with a mixture of zeal and restraint, always sharing the realities of T18 with a gentle candor, for this I am always grateful.

Brianna does give hope, she gave it to me in the wee morning hours on July 16th 2008. Brianna has overcome much in her life and there is no one on this earth to say she will not overcome more. If you've made it this far in my rambling then I ask for you to fervently pray for Brianna and her family..pray for their hearts, spirits and minds to be graciously prepared for what the Lord has in store for Brianna. Hope remains and I pray that God who has been merciful to the Botts family will continue to sustain them."

It's a week past that post entry and God has been good to the Botts family to Brianna. I share this all becuase I need to...I can't tell you what Brenda's favorite color is or how she takes her coffee. Yet I feel we share a bond of friendship, and I am grieving with her, Jerry and Ashley.

God commands Christians to join in the suffering of others :
"Weep with those who weep" Romans 12:15

You have done that for our family and now I am asking you to uphold the Botts family. Pray as they have requested, or visit Brianna's site briannagiveshope.blogspot.com and leave an encouraging message. I know they would appreciate your prayers. Sadly the reality of T18 is now being seen...Brianna at 2 years was thriving only months ago and now is preparing to be with Christ. The sadness is not for where Bri is going it is for those left behind and their missing their beautiful spirited loving girl/sister.

The T18 roller Coaster ~just rambeling

2009-08-24T18:27:00.007-04:00

I love the baby stage, I always have. It's the only moment when you actually feel somewhat in control of your child's life. You get to choose what to feed her,what she'll wear, who'll she'll spend time with and best of all you can tell her what to think...yes you dooo love peas! There are better things then this of course, the kisses, the cuddles, the smiles...need I say more?

One way I rationalized this T18 thing was by considering my daughter with T18 as experiencing an extended baby stage. Each day that our girl is blessed with another day she develops and gains skills but at a much slower rate than a typical baby. So if your like me and love the baby stage what a bonus.

Then I heard about Brooke Greenberg. She's been in a "baby" stage for 16 years. Diagnosed with Syndrome "X" essentially Brooke stopped growing at 11 months old. I saw her story on TLC and I couldn't help to compare Brooke's issues to Alyssa's. I really had identified with her mother, and her family painted a reality-based picture of what our future could be like. Different yes, but similar...then it really hit me I'm thinking about a future for us with Alyssa.

This is something I don't often allow myself to do. I've moved beyond keeping myself to just the day (I now buy more than a 2 weeks worth of diapers) but I've never looked much beyond a month. Seriously I do not allow my heart to fully live with a future view of our lives. Do I have hope yes, and faith yes but my will is not greater than God's. I must submit to Him and to His plan. What if His plan is not like my own. Everything according to His purpose for my benefit and to His glory. We have be blessed with 13 months wonderful months. Our hearts desire is for Alyssa to be with us for many more years. Yet she may not be...

It was like a hitting a concrete wall when I allowed my minds eye to shop along side of Brooke's mom as she tried to find "teen-style" clothes for her beautiful pint sized girl in a baby/toddler shop. I thought to myself "Go , mom! The way you treat Brooke is the way others will treat her..." When Brooke's mom confessed she didn't always tell strangers Brooke's natural age, she allowed them to assume she meant 16 months when she plainly said "16". I could relate, might I do the same thing? While Alyssa could grow bigger than Brooke, will she?

Anyway that was 2 weeks ago in the mean time we had a concern regarding Alyssa's heart and many of the old fears came flooding back. Only to be put back into perspective the next day when we received a good Echo report on her heart. A quick dip on the T18 roller coaster that preceded a bigger drop not for our immediate family but a member of our extended T18 family.

Brianna (www.brianngiveshope.blogspot.com)had another blue spell, with these spells confirmed as being pulmonary hypertension; there's nothing more that can be done. After a brief hospital stay over the weekend she is now home on "comfort care". okay this is worse then hitting a concrete wall...

I haven't blogged about this yet because I want to encourage Brianna and her family. I know that lifting them up in prayer is one of the best things I (anyone) can do. I do that and will continue to pray for them. I just don't know if sharing the fears that stir in me in this whole T18 journey would be the appropriate thing right now. Not that it's wrong to talk about the realities of T18, or that Brenda/Jerry are unaware or easily offended. Just that when I open the door to those thought what a doozy that first step can be...and I don't know how encouraging that can be for Brianna's family, my own, or anyone who visits here wanting hope.

Last year I frantically looked up T18 to get answers. The doctors hadn't given us the official diagnosis for Alyssa yet, it was by a chance that I gleaned this was something they were looking into...after coming to honor page after honor page of precious babies held in memorial I found Brianna Botts. A baby girl (16 month old) living with T18! I watched the news clip of the Botts family story, saw the pictures of this cute little girl and thought "wow, look at that miracle." I contacted Brenda right away, and in what I've learned is her innate kind way..she reached out to me immediately. Brenda has guided me along this journey with a mixture of zeal and restraint, always sharing the realities of T18 with a gentle candor, for this I am always grateful.

Brianna does give hope, she gave it to me in the wee morning hours on July 16th 2008. Brianna has overcome much in her life and there is no one on this earth to say she will not overcome more. If you've made it this far in my rambling then I ask for you to fervently pray for Brianna and her family..pray for their hearts, spirits and minds to be graciously prepared for what the Lord has in store for Brianna. Hope remains and I pray that God who has been merciful to the Botts family will continue to sustain them.

So that's how my T18 roller coaster has been like lately: up and down, swift turns left and right with no end in sight...thankfully.

Thank You

2009-08-11T02:13:00.000-04:00

Photo and video editing at www.OneTrueMedia.com

Alyssa's 1st Birthday Montage

2009-08-03T22:43:00.005-04:00

Thank you Drew for putting Alyssa's birthday video together. You did a great job and captured many wonderful memories for us! You are hired for her second year video !!

please note that you may need to turn off the music player at the bottom of the page before starting the video...

At the end of the party we released 18 purple balloons..in honor of Alyssa and those living with T18 and in memory of our T18 friends that have passed. The party was July 11th, 2009.

Glad that you are discharged from the hospital Brianna

2009-07-26T20:50:00.002-04:00

Briana's out of the hospital! Yeah! For more of an update check out her blog http://www.briannagiveshope.blogspot.com/

The SOFT Conference has come to a close..hope it was a good time for all that went and educational. Can't wait to see some pictures~ eeeheeem Kelly :-) !!

Prayers for Brianna

2009-07-25T11:55:00.003-04:00

I don't have many details..just that Brianna is sick. I'm sure the Botts family would welcome some prayers on Brianna's behalf. It is always encouraging when faced with a new challenge to have support from those who are in a similar place. So all you T18 families out there and all of you who love and support our T18 kids...pray and encourage Brianna that she will overcome this setback, and prayers for her mom and dad (Brenda and Jerry) as well as big sis' Ashley as things unfold that wisdom and direction will be pleantiful, that the doctors provide good care allowing Brianna to resume her silly-smiled filled days at home!

Hugs to you Brianna! Your are so loved!!

Giving thanks for year one and looking towards year two...

2009-07-24T19:26:00.009-04:00

Alyssa then 1 day old. and Alyssa now at 12 months old.

I don't want to seem insincere or cliche when I say that I'd always had a feeling I would have a special needs child. It being a year into this special world, I pause at announcing this as clarity because such a thought may seem strange. But it's true, just as it is true that throughout my pregnancy with Alyssa, I had an overwhelming connection to the Psalm 139:14 and a repetitive thought in my mind..it is by God's grace. I was ignornant to how this would all play out but in hind sight the puzzle pieces are coming together. I do know that I may not get all the pieces to make a whole picture but I'm getting enough to know that it is by divine intervention that my life (and inturn the life of our family) is on this path. All I know is that as I look back I see one piece connecting to another and another ever slowly creating a life puzzle.

The biggest annoyance of this last year is with a *medical community that does not VALUE the lives of the "imperfect" child. It does make me sad that I will have to fight a little harder to get Alyssa's needs met because some else has predetermined that she is not worthy. There's other sadnesses too but they are in the shadows, overcasted by the joys and challenges of being a mom ( a dad) to our shining "star". In our eyes perfect in everyway; yes we know not typical but then again who is? God is so Good. He has prepared me. I didn't know but HE knew and He worked events/moments/people into my life to ready me for this trial.God answers prayers.

I am thankful that once Alyssa entered our lives God saw fit to sustain her life. For how long, we do not know but it doesn't take away from the fact that HE heard and answered our hearts desire and the petetions many of you ferevently made for her wellbeing. God has provided me with a local bibically sound church, gifted preachers and loving breathern to nuture and encourage my caring for HIM and for those that know and love HIM. I praise HIS name in this platform because HE gave us Alyssa. I am learning more and more each day of what HE expects of me and how I can please HIM, praise HIM. Never before would I have exposed myself in such a vulnerable way but here I am and glad to do it if it willhelp bring others to glory.

When I say that I had an inkling that we'd have a child with special needs I don't profess that I had any true level of understanding of how it would unfold. Rather throughout life expereinces I ocassionally felt I was being prepared. This prepartion continues...this last year with Alyssa has been beautiful and frightening. Grief laddened and joy filled. God used instruments ( you all) to help bring us peace and love. He has put me on a path and He will teach me how to follow it. What will this next year bring...more growth? Learning to trust and move beyond the aniexty of what was forecasted by man and into what is pre-determined by God. Yeah I think that it is inpart, the rest are the puzzle pieces yet to be laid out.

Alyssa has overcome a huge hurdle, but is the race won? No, not yet. A long race is ahead of us with many more hurdles. The question on the mind of many is: Now that Alyssa is 1 does this indicate that you don't have to worry about her passing away? Every time I'm asked this question, I hesitate I want to say yes but that wouldn’t be accurate. We celebrated months ago when she was discharged from hospice that she was no longer considered "terminally ill" (A medical term popularized in the 20th century to describe an active and malignant disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient. This term is more commonly used for progressive diseases…not for trauma. In popular use, it indicates a disease which will end the life of the sufferer..a patient is considered to be terminally ill when the life expectancy is estimated to be six months or less, under the assumption that the disease will run its normal course. The six-month standard is arbitrary…)

Now she is in the land of medically fragile (A serious, ongoing illness or a chronic condition that has lasted or is anticipated to last at least 12 or more months or has required at least one month of hospitalization, and that requires daily, ongoing medical treatments and monitoring by appropriately trained personnel which may include parents or other family members, and requires the routine use of medical device or of assistive technology to compensate for the loss of usefulness of a body function needed to participate in activities of daily living, and lives with ongoing threat to her continued well-being). The glass ceiling for Trisomy 18 also remains as most babies born with the condition have a shortened lifespan. Trisomy 18 is a condition of wait-n-see. Each child with this syndrome is affected differently so it's difficult to get a good frame of reference for the path that lies ahead.

Weighing in the aforementioned factors with melancholy assurance we know we are not out of the woods. The SOFT (Support Organization for Trisomy 18 & 13) newsletter comes honoring a child that has passed or we come across a website...some are babies (55 days, 99 days, 138 days) and others are older (18 months, 4 years, 15 years). Living with T18 by definition means that new things develop quickly, routine things rapidly turn into dangerous things and simple procedures are just not that simple for these kids. When I was thinking about writing this, I got a dramatic prompt to how much of a roller coaster T18 can be. Brianna a star member of our T18 brat pack; who's been making strides and celebrated her 2nd birthday around Easter; had an startling health scare (www.brianagiveshope.blogspot.com or CB Briana Botts) involving her lungs/aspiration. This concern had never been an issue for Brianna before and her mom indicated it was a close call..too close. Another T18 brat pack star is Annabel. She's 4 and has had significant bowel/bladder issues and revolving door trips to the hospital for several months now. Just as they get settled at home, another issue arises. There have been other concerns too each faced with unbelievable spirit, courage and love... (www.annabelgrace.blogspot.com) in this journey you will be weary but also ultimately blessed.

God has a plan for Alyssa's life and in this plan I trust. God is sovereign and the plan for her life is already written so I should not concern myself with her longevity. Yet I do (we do). Sadness comes from the knowledge that we will miss her when she leaves this earthly place. If I should outlive her I would miss her every day. This is a mother's selfishness, the desire not to let go of a special gift. Yet eternal life is a greater gift and a gift I want her to receive. In various conversations over the last year the perception of…really with any of our kids/loved ones we never know...There isn’t an expiration date on anyone of us... has been discussed and the idea is spot on.

However for my older children while I shouldn’t have an expectation I do…and I do have a level of certainty that a cold or a rattle sound in a chest will pass and not result in death. I think of Jessica Lindsay celebrating her 6th birthday last summer and a swimming accident led this cute little girl to pass some days later. In reading her blog she is loved and missed greatly. The difference I find between Alyssa and my older children is the expectation. Before I had a chance to dream of a future for Alyssa, the expectation of a future had been thwarted by her diagnosis and harsh prognosis. As Alyssa grows and remains well the thoughts of her passing don’t loom as heavily. They are there, but in the back of my mind. The desire of our hearts speak louder, my (your) prayers speak volumes too. I share this with a level of jubilance...God is being glorified in every breath Alyssa takes. This thought too plays in the back of my mind. It is by God’s grace…

I am thankful for a phone conversation I had with another T18 mom many months ago Alyssa was about 3 months old. She gave it to me straight…you never really relax…There are good days and bad…you wonder, you hope, you pray...then you do. At the time I was hoping for some re assurance that Alyssa turning 1 would be the magic age and all my fears would disappear. What I got was good dose of reality. This legitimate truth helped me to shape my emotional/mental outlook and has served me well these last 9 months.

There is a level of mental preparation required when living with a medically fragile child knowing that your child is “destined” to pass but there is no joy in thinking about, or planning for it. I am glad that the level of urgency is much less now than months ago and the thoughts of her passing are intermittent. The day to day responsibilities of her care, enjoying her, and her being a part of our family minimize what has been projected and magnifies God’s blessing. With faith filled assurance that what was, what is and what will be is orchestrated and so year two has begun.

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4-7

*Please know that when I use a label like the" medical community" it is not an all or none distinction. There are very many wonderful medical professionals that we have had contact with, know of or heard about that do value kids like Alyssa. Just as there are some who do not. For you super professionals I thank you and please continue to genuinely, caringly treat your patients meeting their needs as best you can..for the others you can learn a thing or two and I hope that you sincerely do.

Annabel's friendship touches our heart....

2009-07-16T14:57:00.004-04:00

This purple "A" is for Alyssa on her birthday and was done by Annabel's mom Cathy.

Annabel wore her "Alyssa's Encouragers" bracelet to celebrate our Alyssa's 1st year! Annabel's a great arm/hand model.

Picture below is Cathy in her "Alyssa's Encouragers" T-shirt holding Annabel.

Thanks Cathy and Annabel for helping to make Alyssa's big day so special!!

Happy Birthday Alyssa Grace

2009-07-14T23:26:00.005-04:00

Alyssa says "It's my birthday!!"

It's a few hours shy of Alyssa's official birthday. Since we have an early start in the morning, I wanted to take a moment and wish a very happy birthday to our special girl. I am at a loss for words..just thankful; for the many prayers and well wishes on her behalf. There is no doubt in my mind that if it were not for the numerous petitions put before Christ for her, she would not be with us today. God is good; not because he saw fit to preserve Alyssa. HE is good because HE loves us in spite of our sin (just to name 1 reason).

He has blessed our family with this trial which has caused us to grow in so many ways and forge a deeper understanding of His word and His place at the head of our table. God is sovereign and has pre-ordained all our days on this earth. I will praise HIM today and tomorrow...I will praise HIM if HE sees fit to call Alyssa home sooner than our hearts desire as I know HIS works are wonderful and that He does all to our benefit and to HIS glory. My hope is that Alyssa's life and in turn our actions will bring glory to God.

If you'd like to celebrate Alyssa's big day with us wear purple tomorrow. If you want send us a picture of you in your purple garb. We'd love it!

While this is a celebration for us; it is also a celebration for those families affected by Trisomy 18 as a "long term" survivor is a indication to doctors that "incompatible with life" statement/treatment is not an okay label for T18 babies. Life is beautiful and these lives are worth living! It is essential for the medical model to acknowledge that perfect is in the eye of the beholder and from my view Alyssa is just perfect.

HAPPY BIRTHDAY ALYSSA GRACE WE LOVE YOU!!

This post is dedicated to : Gabriella, Magdelena, Meiko, Molly and Sophie..lives lived and called to glory

Happy July 4th

2009-07-04T12:51:00.008-04:00

Hannah, Alyssa and Jessica hanging out...Hannah has Ehlor's Danlos and it's assorted complications.

Hannah has been an inspiration and encouragement in learning how to persevere during long trials.

Alyssa Grace

While in the womb, she seemed to be alright

No clues foretold the battle she would fight

She was born a week past when she was due

Yet promptly doctors knew things were askew

After her birth, she barely topped four pounds

She couldn’t breathe or make soft baby sounds

The doctors did not know what it could be

But then, to her parents’ angst, did agree

This precious and resplendent gift of God

Pulchritude within and on her façade

Hair like ebony silk and eyes like stars

Will so strong to overcome all her scars

This little one was diagnosed

With Trisomy 18, which causes most

Of those affected to die before birth

And other in their first year on earth

But this girl fought so hard to overcome

To beat the odds and never succumb

She pushed onward with every ounce she had

Refused to give up, fail, or just be sad

And now to this day she is still fighting

Making each day new, fresh, and exciting

She was thought beyond hope of surviving

Yet now is one years old, home and thriving~

an original work by Hannah K

Uncle Shihadeh, Shihadeh George Shihadeh

2009-07-01T02:01:00.006-04:00

My husbands Uncle passed away today, very unexpected. He was a sweet man with a loving heart. He had many trials of his own but was a person who sought to make others happy. He lived in Florida so we did not see him often.We did keep in contact with phone calls and cards; he had a habit of calling out of the blue just to say "hello". With the recent passing of so many celebrities, we can get so caught up in the hoopla of measuring a person by their social status and not their character. Falsely giving acclaim to a #1 record seller forgetting what is done out of the spotlight. I just wanted to recognize a simple man with a simple ambition to love others~ no matter what the cost. Wishing safe travels to the family traveling to Florida, Ed and I would have liked to have joined you. The Shihadeh family is a large family, Uncle Shihadeh leaves behind his sons (and wives/grankids) and many siblings..a large family now with a large hole.

Hopefully his passing will present a good opportunity for the gospel to be shared and well received.

Starting Solids

2009-06-28T16:50:00.006-04:00

Alyssa started eating solids consistently last week. She's up to eating 2tbsp's a day. We are slowly working up the levels. Remember that aspiration and choking is a big concern.. so baby steps. As you can see dining etiquette is something we will work on next. right now we just want to get the food in and keep it in!

Meet Our Friends...

2009-06-10T09:18:00.008-04:00

This beautiful girl is MaCari and she has Trisomy 18!We "met" MaCari and her mom Carri a few months ago by e-mail. We hope to meet them in person some day soon. They actually live close to us...well a few hours away, in another state but hey in the T18 world that is close.

MaCari and her mom Carri

MaCari is 15 months old today! Isn't that something to celebrate? What a wonderful example of how compatible with life Trisomy 18 truly can be...

She looks like a daddy's girl too!

It's a daily thought almost.. the phrase "incompatible with life"..how can doctors or medical professionals in an non-exacting science make such a concrete determination when there are so many examples of just how compatible a Trisomy baby can be to this world. Yes I understand the statistics, however with a change in thinking...a change in practice...there will be a change in the statistics.

www.trisomy18.org
www.trisomy.org

Playing Along

2009-06-09T18:20:00.015-04:00

Here's Alyssa sitting in her chair. Patti, her PT brought it to us on Monday. Alyssa's talking in this shot, I was wondering what she was saying. Is it I want a toy?

Nooo, something about her new glasses. You can't tell but these are her new glasses. They aren't bent up like the old ones, so they must feel a little different for her. We just picked them up this morning. Yep that's it! So now I get it, little miss wants to take them off. Do you think she'll do it, knowing I'm watching!
She's doing it, how bold!

OH!, now she's worried about paparazzi???Caught in the act, but the mission is complete! Well how do you like that?

Alyssa is becoming more aware of her glasses. A few months ago, she'd wear them all day without incident. Now we get an hour or so and then she yanks them off. We'll put them on again after a break and the pattern repeats. She tracks better and does more with them on; so we'll play along with her until she tolerates them better.

Here's another shot of us hanging out... I can't believe the SOFT conference is in about a month! As a matter of fact so is Alyssa's birthday. I'm disappointed that we can't make it this year, to the conference. It would have been a great way to memorialize her first year. I also was looking forward to meeting some of our online friends and learning more about the advances in T18 research/treatment. I hope that we can make it next year; with Alyssa in tow! It would be neat to catch up with everyone in person. The mom's I've met on-line.. Marta, Connie and more have been such a help to me in learning the ropes. Cathy, Brenda,...maybe I'll do a make a wish for the girls to get together. A spa day for us gals, and a Bar-b-Q for the men?!? ;-) Wouldn't that be awesome!! Prayers and hugs to you and the girls...so glad Annabel is feeling better and that Brianna's "scare" was only that! Kelly and Carri your girls are inspiring too! Carri can I post some pictures of MaCari? She too cute, not too. Akaiya, Annabel, Alyssa, Brianna, and Macari..the T18 "brat pack"!! ooh I can't forget about May and sweet little Vera! It seems like Alyssa follows Vera's moves closely. Vera has made some incredible milestones in her 15 months..i can only hope it'll be just as good for Alyssa.

Answering questions...

2009-06-07T21:20:00.018-04:00

What kind of surgery did she have done on her eye? Around four months Alyssa's eyes began to cross. The left side being more affected than her right. (This is Alyssa at 6 months old and before surgery)
A lot of T18 babies have strabismus or other eye issues. After an eye examination it was determined that Alyssa is farsighted too. We began patching her eye and she was prescribed eye glasses to correct the problem. We didn't give a lot of time (about a month) to determine if these non-surgical methods would work. For us this was sufficient time to learn that she would benefit from surgery. Since we knew that she was going to have surgery for the G-tube, her eye doctor was more than willing to come on board and fix her eye at the same time. The results have been wonderful, her left eye is corrected. She is still favoring her right eye though so we continue to obstruct her vision in that eye for brief periods in order to re-train her left eye.

(Alyssa 10 months old)

Alyssa had a skin biopsy, why? Shortly after her birth Alyssa via blood draws was diagnosed with Trisomy 18 (Edward's Syndrome). Once again taking advantage of Alyssa's April 2009 surgery, we decided to get a second skin biopsy to confirm a diagnosis of full Trisomy 18. Her genetic doctor stated:

Alyssa is a remarkable baby...who is showing amazing gains in her milestones that are most unexpected in a child with her condition...

Alyssa with Dr. Schneider - June 2009

We wondered if her progress was because she has mosaic T18 and not full T18. This question was more temporal for us then anything else. The answer wasn't going to change how we feel about treating Alyssa's T18. Since her birth we've taken a moderate approach for lack of a better explanation. We know that every life is valuable and that every child has a spirit that needs to be nurtured. In all that we do on Alyssa's behalf, prayers for Godly wisdom and the aforementioned thoughts guide our way. Last week we learned that she is in deed full Trisomy 18. It's nice to know. I've also come to think that her survival along with the survival of many other babies/kids with full T18 is an encouragement. Not only to other parents who receive this diagnosis while their child is in utero but for doctors as well..T18 awareness~knowing these babies do survive and live happy lives~will help to change the view of the condition.

How does your husband deal with having a daughter with special needs?
Ed is a good dad. He is an involved dad. He has been filled with common grace and a heart for kids. I am thankful that he is an experienced dad (that we are experienced parents) that has skills to draw from for this situation. He loves Alyssa just like anyone of our 3 other kids. It was shock to him to hear her diagnosis; sadness, fear, and anxiety came along with that too. Yet as she gained strength, so did he and the hope of her surviving longer than anticipated encouraged him. Ed is a laid back kind of guy; doesn't talk in depth about his feelings. He mostly lets his actions speak for him. He has said though that it is difficult to be sad when he has Alyssa here smiling at him. He's been a good example for all our kids but especially for our boys in demonstrating unconditional fatherly love. He could have easily chosen to withdrawal into his "man cave", but he is an involved dad with his "special needs" daughter. I know he sees Alyssa as his baby girl and doesn't let the label of a diagnosis negatively impact his love for her. I pray for him everyday, that when it is time for them to part on this earth..that saving grace will allow them to be together again in glory.

Alyssa and her dad after her surgery in April.

How does get Alyssa get so many therapies? Pennsylvania is one of those states that leads in providing appropriate assistance for families with disabilities. Our county in particular is great at meeting the needs of families. When Alyssa was three months old we signed up for early intervention services. Many therapies, resources are attached with early intervention. If you are not familiar with Early Intervention (E.I.) I suggest you look it up in your state. Locally you can call your Department of Public Welfare or Department of Mental Health/ Mental Retardation office for assistance.

Our provider of services is through the Cerebral Palsy Association (CPA). Alyssa has physical therapy (PT) and Occupational Therapy (OT) each once a week. She also receives specialized instruction (SI), to learn how to play' twice a month. The therapist(s) she has are wonderful, very attentive to her needs and development of skill. Alyssa working with her OT Kris on tucked chin positioning for sitting

What can milestones has Alyssa reached? Alyssa developed a social smile about the same time a typical baby would; which was around 2 or 3 months old. She coo's, not always the vowels sounds sometimes it's still guttural. She recognizes our family and frequent visitors. She responds accordingly to each of us and she notices strangers too. She'll cry or seem timid when being held by someone new. If left alone in a room, she'll "call" us; she is content not being held but definitely likes an audience. She began rolling to one side around 8 months and now rolls both ways (her left side roll is stronger). With positioning she can roll over onto her belly and back. When laying on her tummy she can hold her head up well for a good 5 minutes. She still likes to tip her head back when sitting,which cuts down her ability to sit independently. She can sit up for brief bits 1-2 minutes before her positioning goes haywire. she is batting, grabbing and shaking toys and has been doing so consistently for about 2 months. She likes to pull hair and necklaces too!
I just keep in mind that she can do what other babies do, she just has to be taught and it may take her a little longer. I try not to place limits on what she can do or what we will expose her to..she takes the lead and we will follow.

Alyssa playing with her favorite toy.

This spinning toy lights up and she loves it!

The Mic-Key Button

2009-06-07T19:28:00.004-04:00

Alyssa had her permanent G-tube the Mic-Key button placed on May 12th. The first picture is the Mic-Key button closed and the second is with the attachment for feeding. It is pleasantly surprising how much easier the button is for us and how much Alyssa seems to like being without her NG tube. Utilizing the button for feeds is quick and effortless, cleaning is a breeze, and no one can tell it's there unless we tell them! It's nice to have Alyssa's face free of the duoderm and tape. I didn't like the idea of permanently placing "hardware" in our daughter. When first broaching the idea of the button, that is how I saw it..an invasion!

Now it's more like an acceptable version of body piercing. Not so sure if we'll ever get her ears pierced so here's an untraditonal piercing, just for her and its functional too!! (F.Y.I. I will be very unhappy if any of our other kids should choose to have untraditional body piercing~ yes this from a mom with tattoo's~ I know of what I speak.)

A few days prior to having the button placed we made changes to Alyssa's feedings. Her dietitian increased her feeds to 105cc's every three hours during the day and kept the 306cc's overnight. Instead of using Polycose to supplement my breast milk,the use of Carnation GoodStart was recommended. The goal is to eventually have daytime feeds only and allow Alyssa to truly rest at night. Yes, we'd like to eliminate overnight pumping. Can we do it? Yes we can! (ode to Bob)So when few days after having the tube placed, Alyssa seemed a little out of sorts we weren't too concerned. She spit up a bit the 1st day after having the button. Then a little more the next day, by Friday she was projectile vomiting and pooping up a storm. Literally everytime she moved she'd poop and everytime she ate, she vomited. She didn't have a temperature so I followed up with her nutiritonist. All of our children had been soley breastfed, and other than the Polycose additive; Alyssa only had breastmilk. So I was thinking that the formula may have been affecting her in some way. Wrong!

It turned out by Friday night she had a temperature and unlike her usual self did not want to be touched. I was up with her all night and Saturday wasn't much better. By early evening she had a temperature of 103 degrees with Tylenol! So after a few phone calls and consults with her doctors, we headed to the ER at CHOP. On a good day this is a 45 minute drive, due to road work and traffic it took almost 2 hours!!

Once at the hospital Alyssa was admitted;they later determined that she had cellulitis. We stayed up all night Saturday as she had testing, bloodwork, x-rays to confirm correct tube placement. Around 2 am it was clear that part of the issue was the tube site as it was red and hot. By this point Alyssa cried/screamed anytime she was touched. She may have caught a bug too which would account for the vomiting/and frequent stooling. In the end after an allergic reaction to one antibiotic, Alyssa was placed on pain meds, tolerable antibiotics and Tylenol. It only took a few hours to see a difference and by Monday mid day our Alyssa's sweet disposition was back. Alyssa was discharged on Tuesday, three days after her arrival.

This was our first ER experience and unplanned hospital stay for Alyssa. Other than birth and her first surgery in April (for the tube, strabismus correction and skin biopsy), Alyssa in her 10 months had not required hospitlization. It was a lip biting experience, seeing her heart rate so high, her temperature so high and her pure discomfort. We are so thankful for God's mercy in that Alyssa pulled through rather quickly and without serious complications. It's been a few weeks now and we haven't had any other problems. We are still glad to have gone the G-tube route.

Catching Up

2009-05-01T12:55:00.008-04:00

Alyssa resting right of her procedures.

Last I wrote we were preparing for the G-tube. I am happy to report that we are on the other side! Yes Alyssa had surgery the second week of April. Along with the G-tube placement, she had her left eye corrected and a skin biopsy. The only snag during the operation was the placement of the breathing tube. The anesthesiologist had to use a fiber optic scope to intubate her. If they had used the scope from the start it wouldn't have been as "traumatic" but it was introduced after 4 different doctors tried several times by the "traditional" method. This experience will now used as a teaching tool for anesthesiologist as it is going to be posted in the journal of anesthesiology. Aside from this Alyssa did wonderfully!! In two weeks we will return for a follow up appointment. Hopefully at that time Alyssa's button will be inserted, right now she has a malecot. Her surgeon does a 2 step process because she believes the healing is better. Alyssa was in the hospital 4 days. We appreciated how carefully they treated her and the caution used for avoiding any complications.a close up view of the malecotAlyssa was a trooper. She was on morphine for the first day and weaned down to Tylenol before leaving the hospital. She drank 25 cc by mouth when she was allowed to "eat" again. She seemed to breath better and to enjoy not having the NG. Her eye even with the redness looked much better too! We are glad that we went through with this, even though it was hard emotionally. Alyssa being held by Daddy.

.You can see the redness of her eye from that surgeryAlyssa is 9 months old and 13lbs 9 ounces. We celebrate every day that we have with her. One, two hurdles cleared! Wonder what else this Trisomy race will bring??

To hear or not to hear that is the question

2009-03-06T20:37:00.004-05:00

Alyssa had an unsedated ABR hearing exam recently. This is what it looks like...the third visit was the charm; she slept like an old lady! Alyssa had moderate hearing loss, however this may change in time as she has very small ear canals. The loss isn't a major issue now as she hears us well because we're generally in close proximty of her. We'll follow things closely and in time she may need hearing aides or maybe not~time will tell.

Working hard..a glimpse of OT and PT sessions

2009-03-05T18:33:00.007-05:00

Alyssa and her OT Kris working on head control and neck strength. Alyssa getting some tummy time onthe ball. She likes this much better than floor tummy time.
Alyssa likes working on her big yellow ball. Bouncing while sitting up is one favorite things to do.
Alyssa sitting up with help from her OT Kris. Alyssa has OT twice a month and PT every week. We work with her daily at home in addition to the services she receives from her early intervention team.
Alyssa is working with Fran, her phyiscal therapist. She is side lying to help her stregthen head control.
Alyssa loves her work outs. We have noticed her gaining better muscle tone and stability with each passing week. She's a hard working little lady!

Mom's know all kinds of "tricks"...

2009-03-05T09:24:00.007-05:00

Thought it would be interesting to show how I insert Alyssa's NG (nasal gastric) tube. Her NG tube is switched from her right to left side every two weeks. The NG has measurements on it, we pre-measure the length we need and mark it on the tube. This way when the tube is being fed through her nostril I know when to stop. This is one step of how we determine that the tube is safely placed in her stomach. On the day of the switch, I take the tube out in the morning and allow her to feed orally during the day and then place it back at night. She enjoys the break!

After washing her face,her cheek is wiped with a protective skin barrier, then deuoderm (flesh colored medical adhesive) is placed. We cut the deuoderm in the size and shape needed to best accomodate the tube; as well as not obstruct Alyssa's mouth, nose or delicate under eye tissue. While Alyssa is given a bottle or something to suck (this helps to allow for proper placement)the tube is positioned right next to her nostril, when she starts drinking the tube is quickly inserted into her nose and pushed down to her stomach. After placing the tube, tegaderm ( a clear adhesive tape) covers the tube to keep the tube in place. I leave the paper boader on the tegaderm until I do the next check of ensuring proper placement in her stomach. This is done by using a 10cc syringe to draw out 1cc of stomach contents. Then a Squirt of the contents on litmus paper will confirm placement. The paper will change color and the acidity level will indicate if the tube is properly placed. If it is too acid the tube has gone to far (this has never happened). If the tube would go anywhere other then her stomach we have signs to look for also, thanks to CHOP (Children's Hospital of Philadelphia) we've been well trained and haven't had any issues with improper placement.
Once knowing that the tube is placed successfully, the paper boarder is taken off and we are done!
Alyssa fusses a little when having this done, but with practice I've gotten faster and it minimizes the stress for all involved! We are looking forward to April when we say goodbye to the NG tube...next trick managing a G-tube.

Grow baby grow

2009-02-22T20:42:00.006-05:00

Alyssa's health Assesment:

Alyssa came home to us in July only on Tri-Vit-sol and a NG tube. The NG tube was pulled within a week. She was primarily bottle fed my expressed breastmilk 90cc's every 3-4 hours until late September. She also was breastfeeding a little. Due to a cold and concerns over micro-aspiration (which ended up really being low reflux) oral feeds were stopped. We began re-introducing the bottle and breastfeeding in early December ( she doesn't aspirate). She currently breastfeeds/ or bottle feeds at every feeding along with her tube feeding. She gets about 360cc's daily not counting what she eats orally. Her nutritive suck continues to get stronger.

Phyiscally Alyssa has low tone but is increasing her strength as each month passes. She receives early intervention services, phyiscal therapy weekly and occupational therapy twice a month. We recently acquired a Bumbo seat. She loves it! As you'll see in many pictures we've put her boppy to good use, it is nice for her to now have another way to sit and see the world. The Bumbo offers good support for her at the moment. Alyssa is still learning to hold her head up well, her head still lags to the back some. The Bumbo's high back helps her not to drop her head back too much.

Medications: Tri-Vi_Sol/Iron 1ml daily; Omepraole (Prilosec) 4ml daily; PolyCal modular Caloric formula 1 scoop added to every 5 ounces of breastmilk.

Immunizations: Alyssa began receiving typical infant immunizations at 3 months and is up to date. In addition she receives a monthly Synagist shot for RSV during the winter months (5 in total) and has had the Flu vaccine. Alyssa has tolerated her immunizations well. After the last round that included the flu vaccine, Alyssa had 3-4 episodes of vomiting and was more irritable. However she recovered nicely.

Cardiology: Alyssa does not need endocarditic prophylaxis (medication to protect her heart during medical procedures) and has been cleared. She was born with two small VSD’s and an ASD; however by 2 months 2 had closed. The remaining VSD appeared as though it was closing and if it shouldn’t it is so small that it would not affect her overall health in any way.

Ophthalmology: Alyssa is farsighted which is causing her eyes to cross. Crossing of the eyes is also a common feature for T18 babies. Alyssa has been prescribed and is now wearing glasses. If the glasses do not improve her sight line, her eyes will be repaired by surgery.

Audiology: Alyssa failed her newborn hearing screening on her left side at birth. She is followed by an ENT. To date she has not had any ear infections. She has very small ear canals. Her most recent audiology test noted that she has moderate hearing loss bilaterally. She can hear high pitched sounds (like a flute)normally, but drum sounds or our voices is affected by this hearing loss. We are in the process of determining a course of action.

Pulmonology: After having 4 colds, Alyssa continues to demonstrate her ability to well manage mucus, coughing and sneezing without the need for antibiotics. She has small bilateral diaphragmic eventration; which basically means her diaphragm doesn’t inflate properly. It can inhibit her ability to inflate her lungs, but so far this has not been a problem. Alyssa's oxygen saturation level is near perfect when awake or lying down usually staying at 98% to 100%. When sleeping it does vary more~ we wonder if this due to her snoring??

Neurological: Alyssa has not had any recorded apnea episodes. She doesn't seem to have any issues in regards to seizures.

Orthopedic: We think Alyssa has scoliosis which is common for T18 babies. We are hoping to get x-rays of her hips and back to have a clear idea of if and how her back/hips are affected.

Gastroenterology/Nutrition: Alyssa has duodenum inversum; which means her duodem travels in the opposite direction then which it should. Again this hasn’t been a problem for her. She is scheduled to have surgery for the placement of a G-tube in April. She takes medication to control some lower end reflux, without the medication her breathing sounds noisy and wet~ this type of reflux does not cause her to vomit but did make us think she was micro aspirating. A swallowing study was completed back in Novemeber and she does not aspirate.

Genetics: Alyssa’s geneticist would like to obtain a tissue sample when she has surgery in April to confirm whether or not she is full T18. We are just curious, in the end the findings won't make a difference to us. We are learning that T18 has a wide range of anomalies and every child is affected in different ways regardless of the T18 classification.

Other: Wilms tumor is common for T18 babies and these babies should be checked every 6 months for this cancer. Their AFP levels should aalso have a 6 month drawl. Thankfully Alyssa’s scans and bloodwork have been clear to date.

All smiles

2009-02-22T20:21:00.004-05:00

(I've had a case of bloggers block...no excuses, sorry! Note that if there is "no news, that’s good news”.) Alyssa is 7 months old! What a blessing!!We clearly see that we as a family are being prayed for and the Lord is good! I won't be blogging as much but I will do better at providing updates. Thank you for your continued prayers for our family and Alyssa specifically. Continue to pray for her to remain "healthy" and for good outcomes with her upcoming surgeries. The ins and outs of why I have been absent from writing is more simple than complex I’m spent. Now that we have a feeding pump that is working properly at night for Alyssa, I am able to get to bed at a reasonable time and even with the checks at night I can get a decent night’s sleep. However Alyssa is a baby first of all so aside from any medical issues there are still sleepless or interrupted nights. The day seems to slip by so quickly...We are either out and about at appointments, or home with appointments. When we have a quiet day I try to catch up on phone calls, paperwork or projects that have been put aside (there’s a long list of those). Since I’m not a robot there are days when I just want to “veg-out”. Everyday though as Alyssa tolerates it we do her massaging and exercises, in total we do at least 2 hours. I also have to have cuddle time with her, just letting her sleep on my chest, while I listen and feel her breathe. We can’t forget that we are a family a six and not two so there are many duties for myself, Ed and the older kids. Some days it’s a struggle to turn off the TV and connect with the world and other days I’m scratching items of the to do list like it’s poison ivy!
One key thing that has changed is counting the days that Alyssa has been here with us. I am not counting each day, rather I suppose an exercise in faith I moved to the more typical method of measuring her life in weeks or months. I give thanks everyday for her life and acknowledge the gift of this time. It’s important to trust in the Lord’s sovereignty; counting each day while a great reminder of how special her time is…places limits on God’s ability. God’s grace broadens more than a measure of any day and the symbolism of counting the days came to diminish that for me.

Alyssa at 7 months is now 22 inches long and 11lbs. 9 ounces! She is laughing, smiling, cooing, and mimicking sounds. She’s taken to sucking her thumb, and I’ve found her doing so at night many times. She is getting stronger; she kicks her legs, holds her head up well and is grasping at things with her hands. What an awesome 7 months it has been.

Living without door handles

2008-11-18T16:28:00.003-05:00

Alyssa had a good day. The following is just the emptying of my mind with a humble heart. Please know I don't claim to know it all but as you'll see I'm willing to share what I know.. walking my son to his bus stop this morning a wisp of crisp cool air moved across my face, it tickled my neck lightly flowed downwards against my spine causing me to shiver. Then almost in unison my son and I said "..it's getting cold" and instantly I thought but it's July! I literally stopped in my tracks thinking to myself no no no NO it's a not July it's a it's a November? My minds voice rising an octave because I wasn't quiet sure,then confirmed my question by I scanning the near naked trees, yeah falls here it is November. Remember we did the candy treasure hunt a few weeks back, and the harvest party at school it is fall. My thoughts wandered on about fall for what seemed like minutes but was actually only a few seconds, I know because I easily fell back in step with my son who had begun moving more quickly in hopes that it would be warmer closer to his stop. Or maybe he was hoping the bus would come more quickly if he looked like he was ready to board. Whichever all I knew was that it is possible to live life in such a manner that it stands still and moves at hyper speed all at once. I know this because I live it everyday.

My husband had taken a few days off from work prior to Alyssa's birth. We planned on painting our hallway, the trim in the surrounding areas, in addition to sanding, panting and placing new handles in the doors. He removed 3 doors and got started. He was first side tracked by a great summer day tha we decided to a family thing figuring he'd make up the slack when I was in the hospital. So we had our bathroom door unhinged between workhorses on our porch for what we thought would be a day. I was going to be induced so we thought we had a general idea of how things would progress. We were wrong the bathroom door was rehung a week after Alyssa's birth with out door handles, just like the linen closet and a few other key doors; the painting remains too. It's as though it all stopped, but we are living through this at the same time. I know I'm not making sense I guess like many things door handles in the grand scheme of things really aren't that important in life.

Before my conversion reading the bible was like reading Greek. Now it's like a cool drink of water when I have a dry throat. Not that I understand all of it or the fullness of every verse but it brings comfort and peace. And yes I do have a better understanding of the words contained within. It is like being given a key and I am now able to open doors that before I could not. I've picked up the bible many of times during my unsaved days and but put it down again because it just didn't make sense~ it didn't speak to me. Today I better understand why many call the Bible the living word,(other than the fact that God is ever present, that Jesus lives) because it speaks to my pain, fear, or joy, my confusion, to me. If you have yet to experience this I know to you this may sound crazy but I hope that one day you'll come to understand my desperate attempt to explain what it is like to feel your spirit /soul renewed.

I went to church as a kid and liked it very much. By 7 or 8 had the books of the bible memorized and even earlier knew John 3:16 by heart (..for God so loved the world he sent his only begotten son..) but I missed out on having sound biblical teaching. I understand now how beneficial it would have been growing up. Even though I liked church by 14 I liked other things much more...Knowing God's word (knowing the bible) is a significant piece of the Christian walk. I turn to my bible for direction, and understanding. If I had, had better training as a younger person..well all I can say is knowing your bible is important and I'm still putting this statement to use..constantly learning verses for the 1st time as a result of this trial.

I am fortunate that the Lord knew my needs and saw fit to lead me to a church that not only practices sound biblical principals, but is focused on providing sound biblical teaching to all who come through the Lord's door~ not just adults and not just to those who are saved but to all. I came to worship there after a period of years that I thumbed my nose to the idea of worshiping the Lord in a church. I was "spiritual" and created my own ideas of how God wanted me to worship him~ I thought I knew better of what he wanted me to be or do~ I give thanks today that HE knew and provided a means for me to be saved.

I'm sharing this because today was an odd day. A day in which I took a look at my personal inventory. Some things I liked and was proud of and other things not so much. I think I was just trying to understand what am I doing here, really why I am here in this place in my life with this family these children..and what am I suppose to be doing for HIM (not so long ago I would have said doing for me) yes the Lord what does He want me to do? My life is about him or at least it should be. I wish I could say I always act in a manner that showed that I know this but bare bones it's true.

Whew Alyssa had physical therapy today and she enjoyed it so much. She smiled and cooed, stuck her tongue out with delight. Awesome. This from a girl who wasn't suppose to live but a few days, a girl who wasn't suppose to be able to recognize her parents..I am thankful for the Lord's wise placement of families/people in our family's' life that are experiencing similar trials. Some of whom are right in our own church and are shining examples of how to persevere, how to rely upon the Lord, and show that it is possible to get through the "I'm dying here" days. I am thankful for caring friends and family that have been constantly present following this blog and/or sharing their support~encouragement.

I know I've gone on for way too long and I'm all over the map today I'm asking for prayers to be said on behalf of our family and for the following while I may not always list a name as we know that Lord knows and we can just lift them up and He will do the rest: for Brandon; for a boy with diabetes and his family particularly giving his mom courage and strength; for a mom/wife with breast cancer that her chosen treatment will work and that she will be a BC survivor; for a husband/wife being content in the Lord's timing in granting them children and that the practical measures being taken will result in a healthy pregnancy;for Hannah, Brianna, Anabel,Kayden, Jennifer,Allissa, Bethany; for those caring for elderly parents; for our expectant moms and new mom (dads);and you

Oh, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out! "Who has known the mind of the Lord?Or who has been his counselor?""Who has ever given to God, that God should repay him?"For from him and through him and to him are all things. To him be the glory forever! Amen. Romans 11:33-36

Celebrating 4 months

2008-11-12T12:15:00.011-05:00

It is reasonable to put forth that I am so daft that it took something as earth crumbling like our daughters diagnosis for me to fully acknowledge the living presence of the Lord and be readied for the growth He had in store for me. I can be daft and stubborn, something this big was beyond my concept for my life time..He knew. Something this big in one shot clearly showed me this is way beyond me and all I could do was turn to God and faithfully ask-seek-receive..He knew. My kids are my heart, he knew how to reach out to me. One hand was the pulling away of something (someone) I cherished yet the other hand was gently guiding me holding me...

Author Joan Webb wrote: "our heavenly father is actively involved in our growth; he encourages us according to our capabilities and understanding at the time. He does not push us; he waits until we are ready. If God told us everything about ourselves and life all at once, we would be confused and crushed. Instead he teaches us based on our spiritual and emotional age level.." Can I hear an AMEN on that~ it is so true.

As I've said before and will say again I am coming to Christ a worn sinner; been there/done that and he accepts me and loves me molds me and grows me. (Sorry Ed,kids, mom..) I've never experienced or will experience another love like this.

Joan began a prayer by saying Lord you are a compassionate and caring father. Thank you for nurturing my development step by step and giving me understanding just as I need it. Help me to be as patient as you are with my simple and in prefect attempts at gaining maturity.. I'll add: Thank your for these wonderfully beautiful 120 with our daughter and showing us the hearts of friends and family alike today as I cry with tears of joy and grief thank you. You have placed wise people in my life to help guide and direct me (our family) in this journey thank you. Thank you for charity, and organizations like Now I lay Me Down to Sleep, Songs of Love, Prenatal Partners and more; support organizations like Trisomy 18 Foundation and SOFT; thank you for my church and the ability to worship freely, for the brethren within, for our Pastor(s) and their wives, the deacons and Sunday school teachers and others; for the Aunts, cousins, sibling and loved ones who've been a support, for other moms (and Dads) who are dealing with T18 and other long term illnesses who've reached out to us in kindess and thank you for this day. Thank you for our daughter. Amen

I try to balance or edit my thoughts here. I can ramble and not all venting is good, I want to paint a positive light even with this bleak news. I want to share our struggle but also share the hope that we do have. Not all my aaah-haa moments that are shared here come from my own brain. Those I trust offer good advice and listening ears (...you may be sleep deprived and you may benefit from more rest...or have you read..and have you tried..) that has enabled me to better use this outlet. It is by God's grace that Ed and I are on this journey and living it with such love, support and encouragement. Our kids have been given grace and strength too. Even as we are unaware of what each day holds we are gifted with joy, and healing. Thanks for reading and joyfully celebrating 120 days!

Be sure to turn down the volume on the player at the bottom of page before clicking the video belowSongs of Love created and Kimberly McManus sang Alyssa’s song. Pictures were compiled from home shots, Bill Tilton Photography of Delaware (affiliated with Now I Lay Me Down to Sleep) and Ms. C.G were appreciate your generous efforts.

Make an on-line slideshow at www.OneTrueMedia.com

Talking it up

2008-11-12T11:28:00.005-05:00

Alyssa moved into her big girl bed~the bassinet. We had a make shift bed on her changing table that worked well due to her size and needs. Now though she is bigger and moving and we need sides so she doesn't take a tumble. She seems to like her new digs~ and we've had a continuous feeding pump for a week now!! The feeding pump slowly feeds her through out the night eliminating my having to get up and do our hour routine. I still need to check on her but it cuts down our routine barring any problems to about 15-20 min. The feeding pump is working out well. It is a little unnerving that she sleeps so well.

Alyssa is back on Hospice, with a new provider that seems better equipped or in tune with the needs of an infant. We were given oxygen in the event of an apnea episode or as needed. So far no recorded apnea events! Yeah. We had hoped never to use the oxygen but over the last few weeks have used a few times when it seemed like Alyssa's breathing seemed..chunky. This generally happened after a temperature drop, it just seemed like her breathing was more labored. We figure it can't hurt right to have a little more O2 to the brain right?

It is this new hospice provider that ordered the oxygen and the feeding pump once determining our needs. This provider seems more proactive in helping us identify what are needs are and identifying things that could be helpful for us. The other seemed to want us to tell them, but that's hard when this is your first dance~ya' know. I had only heard of the feeding pump a few weeks ago when reading Magdalena's blog (she is a few weeks younger than Alyssa.)

Here's a frustration..during these many initial evaluations most doctors preface before fully reviewing an issue or examining my child with a sentence something like "what brings you here...?" I say "we want to evaluate Alyssa's..." They say" you do realize that she has Trisomy 18, and you are aware of the outcomes..." I nod thinking "DUH!!!" then reply "yes" and smile. Not a real smile, not a warm and welcoming smile, more like a smile that says "if I weren't smiling right now I'd be chewing your ear off with a host of not so nice comments and possibly would be using your tie (or collar in the case of a female doctor) to floss my teeth when I am through. Instead I follow with a sigh, and attempt to release some tension with a good natured quip; reminding myself why it is important to keep a tame tongue (James 3).

It bothers me greatly that doctors feel the need to preface before treating Alyssa that she has T18. I understand that T18 is part of her make up and certain health issues arise b/c of it. Some health issues will not be caused by T18 or if it is some things can be treated.

I'm getting frustrated just writing this...my daughter is a baby first not a diagnosis. My daughter deserves to be looked at as a whole person. If you have arthritis and then a joint needs to be replaced. Should you not replace the joint b/c you have arthritis and that could be the cause of the joint deterioration. Never mind that you are in pain or can't use that joint well, big deal you know you have arthritis..it's equally frustrating to talk about Alyssa to a doctor and they compare her to other babies her age versus looking at her in the framework of Trisomy 18. I know this sounds contradictory to what I just said.

I mean that, YES I do know a 3 month old should weigh more than 7lbs. However in the world of Trisomy and for Alyssa specifically she had done wonders in the weight department. It is not helpful to correct me during an exam repeatedly to say that she is small or in less than the 5th %tile for growth,when I show a glimmer of joy in my daughters ability to thrive.

It is understood that if she were on the typical path, she would be bigger, able to hold her head up well on her own etc. and etc.. However we got off the typical path on 7/15/08 about 1am in the morning! We are trekking a new path and while there have been others before us on this alternate route stones have been left unturned and we are willing to kick them up in hopes that our girl will see the dawn of a new day (over and over again).

Thinking Out Loud

2008-11-08T19:46:00.006-05:00

We are blessed that the Hospice nurse that leads the "team" that Alyssa is on, lives locally and knows about having a child with disability first hand. She along with our EI nurse-she too is an experienced special needs parent-have been so helpful in planning preparing and understanding all of this. Very helpful. In the last two weeks I've spoken with 2 families from this area with daughters that have T18. The first being this area's S.O.F.T. organization's (www.trisomy.org) contact person. Her daughter is 22 years old! I literally cried when I heard that, as when I called her I had no idea if her child was living. The second family has a little girl that is nearly 6 years old.

In speaking with them,The thankfulness that I have Ed to rely on was stirred up again. In my conversations with Kathy from S.O.F.T. , she mentioned many dad's hit the high road when their child is born with a diagnosis such as this or they become detached and never "bond" with the child. I am very fortunate not to have experienced either situation. Ed is a good and loving father to all of our kids. In fact he is very kind and attentive to most kids. He's the dad that goes and plays and gets yelled at almost as much as kids for playing.

Alyssa's arrival posed a new challenge and he has stepped up. He is interested and attentive to Alyssa's needs. As needed he willingly comes to appointments. I say willingly because he could come and just sit there like a bump on the log but instead he is interactive and a good listener. To see him engage doctors, thoughtfully write out or think up questions on the fly tells me how invested he is in our daughter and her welfare. It is a real help to me and a comfort. Not that I would have expected otherwise but sometimes it's easy to take such things for granted; that he'd be here. He is wrapped around this little girls finger; hard to imagine cause Jessica has him wrapped pretty tight too! I am though thankful that he picks up the slack in addition to working. I am thankful for each day we have Alyssa in our lives and for the way generous support and normalcy of life has formed together well for us since her diagnosis. I recognize how fortunate we are and sincerely have tried to express appreciation for all this each day.

There are frustrations though that come along and when I share them please know that it is not my intent to complain rather I'm just trying to process things and figure out how best to handle all that is placed in front of us...I had asked a mom of another sick child how to manage my doctors appointments for Alyssa. Emotionally as well as practically. A key piece of advice was to remind doctors that our daughter deserves dignity and quality in her life for however long she is here. I often battle with myself to be my daughters mother, yes a mother who can advocate for her girl but a mother. As a former Advocate/Social worker it is very tempting to want to take on that role in Alyssa's life ~ you know present my daughter as a case vs. my child. She has though a wonderful nurse Case Manager and other capable professionals to help us deal with the medical pieces and balancing the doctors. Alyssa needs a mom she only has 1 of those. Like many pieces of this puzzle it's all a balancing act I can't be too sensitive by the observations of or the findings that the doctors have. I have to present our concerns for Alyssa with confidence and a willingness to be firm in what we know to be true while accepting that each step is a learning experience too. It's a step by step process.

We all have trials, disappointments, or illnesses to deal with in the mix of all the good things in life. So if for no other reason than to communicate hope in an otherwise sad situation I thank you God for all that is good in our lives. Every day it seems a question is posed about how to proceed in one area in her life or another. Wisdom to know what to do and when is constantly needed...Everyone, should be quick to listen,slow to speak, and slow to become angry. James 1:19

Inward warfare

2008-10-31T23:00:00.012-04:00

As a teen I ran track, my favorite event being the hurdles. In my head I'd count my steps 1,2,3,4,5...get into my stride hit a rhythm that lifted me off my feet, straddle and land; only to repeat in quick time 1,2,3,4,5 stride, off my feet, straddle and land. The moments over the hurdles were as though I was soaring, seconds w/o gravity holding me down,the wind in my face then tip~tip~tip grab my feet touch the ground; with the gravel beneath my feet 1,2,3,4,5...off my feet, straddle,land until the race was done. The challenge of clearing the hurdle without touching it tipping it or hooking it to cause either me or it to fall was invigorating. It wasn't about winning which I did often enough, rather I just liked to finish a well run race. Not all hurdles can be cleared and not all races are easily won. My track days are long gone and now we as a family are running a much different race. Dr. S said Alyssa cleared a hurdle she's survived 3 months. This is just 1 hurdle of many. While I am joyful, it is also sobering. How are we going to finish the race of my daughter's life?

I thought that if Alyssa survived to 3 months that I would feel better about the given prognosis. I was wrong. I thought that hearing Dr. S say that Alyssa is fragile but healthy would bring comfort. It does but even though I appreciate her opinion that Alyssa looks to be a long term survivor of T18 it's not a lasting comfort. Wouldn't it be hypocritical of me to say "what do those doctor's know..." because she is alive today and surpassed the initial expectations? Yet encase the prediction of her being a long term survivor in certainty because it meets with my hearts desire. This is a lesson, a test in patience, and faith; understanding that I lack control in this situation.

I took some time away from blogging or rather intense blogging because I've been wrestling with so many emotions. I took the advice of a someone I trust to focus on getting adequate sleep, turning to the scriptures for direction/comfort and acknowledging that there aren't any easy answers or paths to take in this trial. At least that is what I took away from our conversation.

I think because we were given such bleak news at Alyssa's birth that while we had hope,our expectation was that she was not going to survive. We were just hoping to be able to bring her home and let her experience our love here before passing. We thought we had days at best, maybe a month. This little spitfire though did something we didn't imagine, she survived. We repeatedly said for this being the worst news ever, this is the best possible outcome so far! She didn't have any apnea episodes, no major health issues with her major systems. No heart problems, or lung issues, up until 2 weeks ago she didn't take any medications except for vitamins!Basically she looks small like a preemie, but a fairly typical appearance. Yes I do see some of the tale-tell signs of T18, but straight away most people don't. I think this tricked us into almost seeing her as well, because we were expecting so much worse.

I found a few T18 babies similar to Alyssa, many who not only survived the 1st year but are old at 19 months, 4 years, 7 years and even 22 years old! On the other hand a few died at 6 months, 9 months, 16 months and 4 years old. So it's that see-saw effect how fully do I rejoice in Alyssa being "healthy" because we know from the experience of others her health could decline in a blink of an eye.

The lack of sleep really affected my handling of this all too. I felt myself draw nearer to the Lord the moment the words T18 entered my consciousness. I feel so blessed to have been given this gift of faith and the strength to endure this unfolding trial. This test of faith as I see it has clearly and most vividly given me proof that there is a living God and He has been at work in me, in Alyssa and our family. It's not just because she is doing well that I know this,the Lord has revealed himself to me. I can't adequately write it out as so many emotions, thoughts and truths are involved. Yet I can say that as a Christian I have grown leaps and bounds since July and I am thankful for this. There is a strong inward struggle that comes along with this growth/realization (at least there is for me) and to counter all the forces in play I need to be consistent in devotions~reading the Bible and mediating upon the words of the Lord and get sleep. Lack of sleep can be a dangerous thing in many ways and without clarity of mind much can be lost. So these last few weeks I've tried to dedicate time to reorganize my thoughts, my days and rest; so that I can be the complete person I need to be as a Christian wife and mother.

Bottom lining it this... we have more hurdles to clear. Will she be alive at 4 months, 5, or the ringer month 6? If she isn't how will I cope? How we we cope as a family? This is a perfect example as to why it is important to focus on the day to day and not look too far into the distance. Who of you by worrying can add a single hour to his life?...Therefore do not worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of it's own. Matthew 6:27 and 34

2008-10-25T19:42:00.000-04:00

The Top 10 things (well almost) having a Trisomy 18 baby has taught me:

10. 30 cc is equal to 1 ounce. Proper ph for our daughter's stomach is between 1-6. I can never say..."I'll never use high school math or science in everday life." For I now use it everyday.

9. It is possible to hold a baby, change the diaper of a two year old, actively answer the "why" questions of a 5 year old and tell a 12 year old what there is to eat in the fridge all at the same time!

8. Picking the nose only begins the list of delicately sqiumish things a mother would do for her child...can we say suppository.

7. Juggeling is not an act that is done soley with balls, cubes or plates. Schedules/appointments, phone calls and meal preparation apply too.

6. God is good.

5. Medical school is where doctors go to get basic training for parenting.

4. Family is more than DNA, the blood of Christ binds much more deeply.

3. Don't run a quick errand after doctor's appointments. Go home and rest. The cashier/ service representative finds it difficult to understand what is being said through tears and doesn't get why your blubbering in the first place. S/he just wants your check/Mac card (??payment of choice) and for you to get on with it; no explainations please!

2. Love knows no bounds

1. In all things glorify God.

What will the future hold?

2008-10-25T00:02:00.006-04:00

Alyssa's first genecist ~that we had by default~ Dr. Z offered no hope to us regarding Alyssa's condition. I think if a person lives life based on statistics then surely dissapointment will be overwhelming. However when hope and faith lead in life statistics are just numbers the real proof is in the living. I fully assert that doctors do not have chrystal balls and cannot see into the future. Predictions or educated guesses lead them and medical needs direct them but in the end it's the sovergnity of God that alone holds the outcomes. Many times the training and gut instincts doctors have are inline with what God has in store and then there are the times where God reigns so supreme he renders the opinion of a doctor mute.
I wonder could this be one of those times?

We were told Alyssa has full Trisomy 18, and not to expect her to survive more than a few days at best. Then we were sent home on hospice~ a choice made so that our child could die at home with our love~told not to expect her to live a month. At 2 months we really questioned her diagnosis were they sure it was full T 18, maybe it is mosacic. Alyssa's major organ systems are "healthy", she is fragile but appears healthy. Somethings has got to be off right?...

We decided because we felt as though we had too many unanswered questions about Alyssa's genetic make-up and we were not pleased with Dr. Z; we'd look for a new genecist. It's not because Dr. Z was the bearer of bad news that we decided to change but CHOP did make a significant error (without apology to date) in the report regarding our daughters' genectic make up. While the error didn't affect her diagnosis, it was something that is significant. The CHOP report in that area is wrong and this mistakes still needs correction. Now it's left up to us to back track and get the correction made. Anywho we want to work with someone who we deem to value our daughter's life even if she has a diagnosis that is incompatible with life...

Dr. S with Einstein/duPont (not CHOP) is our new doctor and it's official Alyssa has full Trisomy 18. We are glad to have this concrete answer. Dr. S the geneticist is personable and a good match for us. She will follow Alyssa, so we expect to develop a relationship with her. Upon Dr. S's initial evaluation she finds Alyssa to be healthy!

She used the word healthy~the word I was trying to stop using...Dr. S indicated that apnea and infections are the significant issues now. We've (Alyssa has) overcome the first big hurdle making it this far. She see's Alyssa being a long term survivor. My mind is trying to reconcile that I have a terminally ill child who is as "healthy" as my healthy children. Yes she is small and fragile but she is stable. She could survive till 1 years old, or 4 years old or God grant it 22 years old! There are several families with T18 kids of various ages. Yes I know the statistics and I also see that those "not compatible with life" have found a way to make do..wow!!

There are many hurdles to jump between now and 6 months let alone a year or more but hope..having hope is a wonderful thing. These kids are wonderfully made..whether or not speech utters from their lips, or steps abound from their feet..they are wonderfully made and a gift.

Specialist

2008-10-24T23:49:00.003-04:00

In the past few weeks we have had orthopedic and nephrology (kidney) appointments for Alyssa.

For her ortho. regimen; we are to return in 2 months for x-rays. Aside from that Alyssa has no restrictions. Dr. Linton happened to be at this office for a rotation in King of Prussia. We hadn't seen her since the NICU, she was one of the doctors that cared for Alyssa. She seemed impressed with Alyssa's growth and wellbeing.

There were no concerns for her kidneys, Alyssa's scans were normal at birth. She should have repeat blood level drawn in a few weeks to check functioning. All in all she is typical in this area.

RSV and Trisomy

2008-10-08T08:21:00.003-04:00

Good news.. the RSV drug (synagist) was approved, the appeal worked! So it's covered 100%. Yeah! We do have a secondary insurance for Alyssa but there were problems in coordinating the benefits. It seems that all has been corrected and this should decrease some of our concerns. To my understanding Synagist is given in a seris of 5 shots each about 3,000,00 or 15,00.00 total! Smoking cows, that a costly drug!

Blessed

2008-10-02T01:14:00.002-04:00

I know I don't often talk about my feeling regarding our family as a whole or my other children individually. I suppose i am focused on sharing this new world of Trisomy 18 and want to document it from a perspective relative to Alyssa.

I do want to acknowledge that how my heart speaks regarding Alyssa is similar for my other kids too. I know this doesn't need to be said, but I want to. Each of their births were (and continue to be) a miracle. I am appreciative of their lives and the time I have to spend with them. Unique individuals they each are and special to me in ways that are difficult to express. Alyssa's arrival heightens these feelings. I am so grateful and thankful to my living God for my children.

As a family I can say we are not typical, backwards in many ways but I think the love we have for one another is evident. While we need to express a little more patience and kindness towards one another, the bond is strong. I thank God for preserving my marriage so that my children can feel love and protected in a two parent household (before anything is said I was raised by a single mom). I think it is a benefit and a gift to them to have a mom and dad that like each other and them; in addition to loving them. We are blessed.

Pulmonary

2008-10-02T01:06:00.004-04:00

Alyssa is 78 days old!!

Pulmonary Appointment Monday Sept 29th

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Alyssa's lungs were clear and her oxygen level was at 95%. (I was pleased b/c she had a stuffy nose.) She will be followed by the Pulmonolgist regularly.

Dr. M noted no concerns with Alyssa's lungs at all! They are functioning normally.

There is a concern as we knew regarding her diaphragm. Alyssa has a right side diaphragm eventration (Extreme elevation of her right half of the diaphragm, which is usually atrophic and abnormally thin)and it is slightly larger than when at birth but not problematic at this time.

The only way to repair this problem is by surgery but that isn't recommended now. If she should develop problems relating to the DE, then we will look further into correcting with surgery.

This was all good news. The Lord again has spared us the worst of the worst. Big prayers have been answered. My question to each doctor is...we know the prognosis of her condition based on that what would be the expected cause of her passing. Dr. M is in agreement with all the rest that it would be a respiratory event. Since her lungs are healthy it would likely be aspiration pneumonia (vomit or reflux gets into the lungs, causing inflammation). Which means how Alyssa tolerates feeding ,eating is important. We don't want her to choke or have difficulty swallowing .

I know it is strange to feel joyful in knowing the above but it relieves some of the stress of thinking that at any moment her lungs will just stop working or that they are working inefficiently. It is helpful to know that more than likely it would be a specific event like choking that could cause the pneumonia.

The best news of all is that Alyssa has had 0% of recordable apnea episodes. This information was downloaded from her apnea monitor. 0%!! The breaks in breathing I had witnessed (2) were not related to T18 but the type any infant has~ it may have seemed worse to me because I was (am) so focused on looking for breaks in breathing. It is normal for infants to take 5-10 second breathing breaks 20 seconds or more is an apnea event.

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The next big appointment in our book is the geneticist. We can get a lot of good information from her hopefully. i don't expect she'll have much at our initial appointment but may help be a guide in all of this.

I need to go but I just want to acknowledge God's hand in this, can you see it? Not just at the pulmonary appointment which his work is clearly evident or at the heart doctor but in all of this. We received the worst possible news parents can get..before we had a chance to celebrate Alyssa's presence we were thinking of her departure. Yet her she is 78 days later. We were told how all the major organ systems are affected by T18 and again God's grace is evident.

What a fool I was before knowing him what a fool! Everyday and in every way I now know He is here, He knows every hair on my head and thought in my mind. Praising him all the days of my life, thanking him for all the days of my daughters.

Thanks you for your prayers regarding these appointments and for everything.

Encouraging verses

2008-09-27T21:51:00.004-04:00

A T18 mom who's daughter had 55 wonderful days on this earth found these verses comforting. I wanted to remember them as they are a needed reminder of God's kindness and goodness to us:

My brothers and sisters, you will face all kinds of trouble. When you do, think of it as pure joy. Your faith will be put to the test. You know that when that happens it will produce in you the strength to continue. The strength to keep going must be allowed to finish its work. Then you will be all you should be. You will have everything you need. (James 1:2-4)
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. (2 Corinthians 1:3,4)
The Lord is close to those whose hearts are breaking; he rescues those who are humbly sorry for their sins. The good man does not escape all troubles-he has them too. But the Lord helps him in each and every one. (Psalms 34:18,19)

ENT Appointment

2008-09-17T20:26:00.002-04:00

Alyssa is 64 days old!
We had an unexpectantly busy day today. This morning Alyssa had an appointment with the ENT. We learned that she had very tiny ear canals and nasal passages. This is common with genetic disorders.
Alyssa failed a hearing test at a week old on her left side. Today's examination showed that the canals are so small on that side Dr. L couldn't even see her ear drum. This may change with age or it might not~it's a wait an see. Alyssa does hear out of her right ear even with a small canal on that side (the left side is considerably smaller). She even had wax build up! (I never thought I'd celebrate earwax). Her nasal passages are also small which accounts for her noisy breathing and congested sound at night. Saline can help moisten and reduce the sound but until she starts breathing from her mouth and nose- a skill most babies learn around 3 months-vs. being a primary nasal breather she will have nosier breathing.
We have a follow up appointment in a few weeks and she will have a cat scan then to get a base line of her oral and nasal cavities. Overall the appointment went well. We'll have more information later but it's good to know that at this point there are no serious concerns.

Alyssa and I quickly went into the store on the way home. I had her in a carrier on my chest. As I hurried along (cause as you know germs don't stick if you move fast *ha-ha*) I heard people admire Alyssa and her small size. I gave a smile and a polite laugh but did not engage anyone so we could make a quick get away. I heard one older woman say something like "oh new mom's they're always so nervous." If she only knew :0)

Alyssa did not enjoy her car ride at all. Monday she did fairly well but today she was a pistol. When we got home she wanted to be held and when I didn't she cried. So guess what I did..held her.

Our insurance company has denied the $65,000 bill for Alyssa's CHOP stay. Apparently this is typical, as they want it to be resubmitted. They itemize the bill each time it's submitted by the service provider, to look for ways to reduce costs or validate services. This must work well because a few weeks ago the bill was $70,000. The downside is that we get called by the service provider for a resolution or for payment. In other words they want us to bug the insurance company to pay the bill and to encourage this they bugs us. What a tangled web! It'll get covered..eventually
They have also denied a medication that would help ward off RSV which is a potentially dangerous virus for any baby let alone a medically fragile one. So I had to write an appeal letter and fax that over to them; in hope's they'll reconsider. Insurance is great until you need it but don't get caught without it! Ya know. I can hear the Kaptur's in the distance saying..it's only the beginning. I know they have dealt with things of this nature and more!
Anyhow just seems like the day came and went.

Welcome to the world baby Camille. Congratulations Brook and Jeff!

This week we are celebrating 9 weeks of living!!!

Cardiology Appointment

2008-09-15T19:45:00.000-04:00

God is good! Alyssa is 62 days old!
Thank you for your prayers. Our prayers were answered today in a most direct and undeniable way!
Alyssa was released from CHOP without heart medication but was said to have congenital heart disease. It was concerning for us not to know the extent to which her heart affected her overall health. Alyssa was born with 3 "holes" in her heart. The two in the upper chambers are VSD 's(ventricular septal defect) and 1 in the lower chamber is an ASD(atrial septal defect). The following was determined by reading the echocardiogram report from 7/16/08 and reviewing that study; as well as a EKG (electrocardiogram) and a second echocardiogram completed today...
One of the two VSD that were present at birth has already closed! The second is nearly closed and most likely wouldn't be present in a few months time!! Dr. D said having one or two small VSD’s is like not having any at all, it really is not concerning. The ASD is small and will likely close (as it is nearly closed now) in the near future. Even if it doesn't due to its size and location there isn't any need to treat it surgically or with medicine.
People with this same type of “hole" live normal healthy lives. At future medical appointments a murmur may still be heard but it is the type of murmur that anyone could have- in other words it is not a condition specific to T18. The bottom line is that Alyssa DOES NOT have HEART DIESEASE. This is wonderful news!!! While we still have other hurdles big and small regarding Alyssa's medical status, this was a BIG one and we feel so blessed. I know the heart can play a role in apnea episodes. Cardiac complications such as heart failure is one of the most often causes of infant death with children with Trisomy.
Dr. D the cardiologist was very kind. He mentioned that he currently treats an 8 year old with T18. He said that incidents of children surviving longer (up to a year) has increased slightly because the medical community IS addressing congenital heart problems in T18 babies. My loose interpretation of what he said is that addressing cardiac concerns may not change the prognosis of the syndrome but it is an encouragement for the treatment of these cardiac complications.
Hearing this news I think of beautiful Brianna Botts and her big blue eyes. I spoke with Brianna's mom last night and she refers to the choice of treating Brianna's heart issues as a main reason for Brianna’s long term survival. Brianna is 17 months old. While I am joyful, we know that Alyssa is medically fragile, apnea and respitory infections (like pneumonia, RSV, or the sort) are another common cause of death. Alyssa has an upcoming pulmonologists appointment to address her diaphragmatic hernia (her diaphragm pushes into her lungs) and access her lung status. Please pray that we would again receive good reports regarding her lung health.
A big prayer was answered today. A healthy heart..wow! Praise God!

The Announcement

2008-09-13T00:13:00.004-04:00

Alyssa arrived in the world at 12:40am on Tuesday July 15th. To say she is a spitfire would be quite an understatement. She fought hard to get here and I pray she will fight equally hard to stay here...at least for a while. Now we face the journey of our lifetime understanding what is happening to our family and Alyssa Grace...

We are blessed to announce the birth of our beautiful baby girl...
Alyssa Grace Shihadeh,
4lbs 3oz., 18 inches
July 15th 2008
Was the announcement we made via e-mail (on the 16th) to most of our family and friends. Phone calls would have been too difficult; too many questions would be asked. We wanted to celebrate with them before sharing the devastating news that Alyssa was born with an extra 18th chromosome (Edwards Syndrome). A syndrome that would result in her life not lasting more than a few days or months at best. We needed time to digest the thought that our daughter whom looked perfect to us, was not expected to live. How could this be?

Just so you all can get an idea of our journey to this point I am including some e-mails that our Pastor had graciously sent out on our behalf.
I also wanted to take the time to say THANK YOU to our church family, family and friends who have been so caring. We hope that you'll use this site to get updates on us as a family and about Alyssa. We will update it as often as we can.
7/16/2008 : Please pray for little Alyssa Shihadeh. I know some of you were concerned just at the low birth weight. She was transferred yesterday from Chester County to CHOP for testing. The Doctors were concerned about her lungs. Last evening we heard that they ruled out a tumor but have concern about her diaphragm. There other tests that are being done that are potentially serious. Let’s pray that these serious illnesses will be ruled out and that God will help little Alyssa to overcome a difficult start in life! Poor Trish … she delivered at 12:40 am Tuesday and later that same day was released so that she and Ed could travel into Philadelphia to see Alyssa. She has not had a chance to physically recover from delivery and is facing serious illness in her little Alyssa...
At a practical level, Joy has the older three children today so that Ed and Trish can travel to CHOP this morning. Nancy and I will meet Ed and Trish there. Pastor Bob will have an update for prayer meeting... Let’s pray that the Lord will be working this for good at various levels!
Warmly,
Pastor Mitch
James 5:16-18 … The effective, fervent prayer of a righteous man avails much. 17 Elijah was a man with a nature like ours, and he prayed earnestly that it would not rain; and it did not rain on the land for three years and six months. 18 And he prayed again, and the heaven gave rain, and the earth produced its fruit.
July 17th: As you know, little Alyssa Shihadeh was born at 12:40 am Tuesday, July 15. She was moved from Chester County Hospital to Children’s Hospital of Philadelphia on Tuesday afternoon. On Wednesday afternoon Ed and Trish met with seven doctors and Alyssa’s critical care nurse. The medical team though not absolutely certain had diagnosed Alyssa as having Trisomy 18. This was the news that Ed and Trish were dreading to hear. On Thursday afternoon at a follow up meeting, the doctors had more results back that confirm the Trisomy 18 diagnosis. The doctors have been good in their conveying of their diagnosis and prognosis while respecting Ed and Trish’s obvious love for their little girl.
Trisomy 18 (Edwards Syndrome) is rarer than Trisomy 21 that we more commonly know as Down’s Syndrome. Trisomy 18 is also much more serious. The likelihood of a child with this condition seeing their first birthday is between 5 and 10 per cent. The underdeveloped brain typically forgets to tell the lungs to breathe. So a little one may come home from the hospital and then just pass away when a parent is out of the room. Those few Trisomy 18 babies who survive a year will not know their parents from a stranger, may sit up but never walk and will never talk. The articles provided at the links below list a host of other problems relating to the digestive system, kidneys, etc.
Little Alyssa is a beautiful, petite baby with a full head of dark hair. She reminds some of us of her sister Jessica when a newborn. Alyssa is stable for now and is tolerating a small amount of milk. She has a tube through her mouth to her lungs to assist her breathing, though she is at a minimal level. She has a smaller second tube through her mouth to her stomach.
We have held off giving some of these details until the further test results were announced in this afternoon’s meeting. Obviously, this is a very difficult trial for Ed and Trish but they are doing well. Trish was walking some today at CHOP but yesterday she was still using the wheelchair as she has just gone through labor and delivery. I believe God is helping Ed and Trish to process this sad news and to make decisions regarding Alyssa’s care. Let’s continue to pray that God would give them help and that they would sense His presence amidst their grief. Let’s also pray for Ed and Trish that they would get some sleep!...
Warmly,
Pastor Mitch
http://www.trisomy18.org/site/PageServer?pagename=parents_whatisT18

So now your pretty much caught up and we hope you will continue to visit and pray for Alyssa, our family as well as other experiencing this difficult road of T18.

CHOP

2008-09-12T01:13:00.003-04:00

Our daughter was born and within 12 hours and two hospitals later we were home- all of us except for Alyssa. I couldn't sleep and got on the PC to look up the possibilities of what she could have. I did not know what I was going to get when I typed in Trisomy. I scanned every page I could relating to T18 and thus became more and more disheartened. Nobody told us directly that this was what she had, but I had a nagging feeling; especially because of my conversation with the doctor from our hospital. I grabbed our camera and compared her pictures to the ones I could find on-line and nearly pulled my hair out.

There was a picture of a rocker bottom foot on-line and a picture of Alyssa's foot in our camera. When comparing the two I knew and I cried out in despair. I left the PC and went to bed. Ed was tossing and turning and I said "she's going to die...I don't want her to die." I have a habit of talking in my sleep, so I don't think Ed thought I was fully awake. He thought I was talking in my sleep, but still said "what?!?" I said " Alyssa she has Trisomy 18 and she's going to die, I don't want my little girl to die." Ed rolled over as I cried uncontrollably. I don't remember all that was said but he reassured me that I was going off the deep end, I do tend to look at the worst of things while he is more optimistic. He reassured me enough that I was able to get a few restless hours of sleep.

In the morning I called our Pastor's home. In speaking with Nancy, his wife I confided that I felt the hospital was keeping something from us and I was fearful that it was a diagnosis of Trisomy 18. I ended the conversation as we were getting ready to go to CHOP. Nancy and Pastor Mitch were going to meet us at CHOP later in the day.

After dropping the kids off with friends, Ed and I talked in the car. He feeling confident that everything would be fine and work out and me wanting to believe that but was really unsure. We arrived at CHOP and spent some time with Alyssa. Dr. L came by to say "hi" and engage in some friendly banter, but I wanted answers. She was vague at first because she wanted the entire team there to present their current findings. I pressed on and finally blurted out..."you think she has Trisomy 18, don't you". Surprised Dr. L asked if we had heard of it and we confirmed that we had. She confirmed with us that this was indeed what they thought she had but they would have more answers later...If she said anything else I don't remember Ed and I were crying at this point. In an instant my whole world shrank and I felt smaller and weaker than our 3lb 11 ounce little girl who laid in her isolate in front of us.

An hour or so later, the Pastor Mitch, Nancy, Ed and I along with a host of doctors met and the disclosed the preliminary findings Alyssa has Trisomy 18. We waited for the meeting to conclude before the 4 of us grieved like I never imagined I could or would have to in my life time. We spent more time with Alyssa, then left her and returned home to be with our other kids. We told our eldest son the facts as we knew them, the younger ones just knew that Alyssa was (is) sick.

We met again with the doctors on Thursday in which we received the final genetic report and discussed removing the breathing tube from Alyssa. All the kids were with us and we decided to take pictures as a family for memories sake. Alyssa's breathing tube was removed around 2pm and within an hour not only was she still breathing on her own, she was drinking from a bottle. All her major organs were functioning within the normal limits. Her heart has 2 small VSD's and an ASD; which we don't know how this will affect her. Her diaphragm had herniated into her lungs however did not compromise her lung functioning, again we don't know the affects of this either for her overall health. We know her brain is affected but not to what degree, she hadn't had any apnea episodes. Alyssa spent a week in the CHOP NICU.

Each day was a blessing, especially as we saw her progress. Visit her care bridge page www.caringbridge.org/visit/alyssagraceshihadeh for the daily updates of our time at CHOP.

Labor and Delivery

2008-09-12T00:12:00.007-04:00

Monday July 14th: I was 41 weeks 3 days and admitted to the hospital at 9:43 am for induction. Our younger children were at the home of some dear friends, while our eldest son my husband and I prepared to welcome the newest addition to our family.

Nathen had been present at the birth of our daughter Jessica 2 years prior. He was 10 then and it was a great experience. The nurses were wonderful with him and discreet with my needs during labor that we were all comfortable. we were hoping to have a repeat of that experience. after settling in, the three of us walked the halls in hopes of kick starting my labor.

After hours of walking, medication (Cervidil and pitocin) resting without medication my labor was not progressing as it should have. It was strange especially since I'd been down this road 3 times prior. In truth the induction was difficult as Alyssa didn't respond well to the medications used to initiate labor. Her heartbeat continuously would drop dangerously low. I was prepped for a C-section, which included getting an epidural and the OR was prepped to receive me. Our goal was to have the safest delivery and our hope was that would be a vaginal delivery.

I tried different positioning to see which way the baby would best tolerate labor. She didn't seem to like any way but each time going to the OR was mentioned Alyssa's heartbeat would steady. I was on oxygen and remained on my right side for 6 hours + to assist Alyssa in tolerating labor. My epidural pooled to my right side so I could feel labor on half of my body and a minimized labor on the right side. I was given fluids through IV and infusion through the uterus. Our doctor was committed to our desire to deliver vaginally by continuing to use various methods to maintain labor until it came to the point when Alyssa's heart rate didn't recover quickly. The decision to deliver her was made; the OR was about to be called when her heart rate steadied and instead I was instructed to push. Three long hard pushes later; Alyssa arrived into the world with a soft but audible cry.

Alyssa's daddy chose her name (we had a boy’s name too). We hadn't agreed on a girls middle name. However the phrase “by God's grace" often ran through my mind during my pregnancy when thinking about how the Lord had been at work in my life. By my 5th month of pregnancy the perfect girl's name came to me Alyssa Grace. It wasn't until days before her birth that I shared this name with Ed. He didn't give me the "okay" until the nurse announced the arrival of our daughter and asked "what is her name?" In unison we responded "Alyssa Grace"...

By this point it was about 12:40 am on Tuesday July 15th. When Dr. A held Alyssa up for us to see, she looked small but no smaller than our other babies. I like Dr. A because he takes his time in examining a newborn after birth. He also delivered our daughter Jessica. As Dr. A examined Alyssa, I heard him say under his breath asymmetrical appearance and inter uterine growth restricted (IUGR) before passing her off to the nurses. Alyssa was I my arms about 5 -10 minutes later. By that point the placenta was expelled and Dr. A in a surprised tone said" hey, look at this tiny placenta!" The placenta could be held in the palm of 1 hand it was the size of a tennis ball. We didn't take much note of it because our girl was in my arms.

As I held her I noticed the nurse kept her hand at the back of Alyssa's head, even when I attempted to reposition her. I held her for about 5 minutes or so when the nurses took her back to the isolate to warm her. It was then I was asked if I knew of Ehler's Danlos. Unfortunately because of a Hannah (a young person from church http://www.caringbridge.org/visit/hannah317) I did know what it was. The NICU doctor thought Alyssa's joints were lax and that it could possible be a sign of Ehler's Danlos. When she came to my bedside and saw that I too was extremely hyper mobile, she said well maybe she just inherited your joints. By that point we were told because of Alyssa's small size, (they didn't get a weight yet but she looked small) she was heading to the NICU and off she went.

It was about two hours later that we caught our next view of our little girl. It was not what we were expecting at all. She was intubated with a breathing tube and hooked up to all sorts of wires. We were told that she needed a little extra oxygen and then due to a mass in her lungs and the tube was kept in as a precaution. At some point it was mentioned that genetic samples of the placenta was going to be taken due to her restricted growth. Okay no problem...and I went off to bed anxious but feeling as though she was well taken care of.

I slept for about an hour, showered and back at my daughter's bedside. It was a mid Tuesday morning when Ed and the rest of our crew met me there. We were then told that Alyssa was being prepared to be transferred to the Children's Hospital of Philadelphia (CHOP) due to the lung mass. One doctor mentioned to me that she saw somethings that led her to believe that Alyssa could have a genetic problem. When I pressed for more information she said something like downs or trisomy. She was very easy going about it saying something like...I don't see any issues, I think she's fine we just want to know what the mass is; cause if she had something like trisomy that would be awful. Not a good outcome.

I should mention that I was a Case Manager for a number of years for the Department of MH/MR (mental health and mental retardation). The doctor was aware of this when speaking to me and I indicated to her that I was aware of the nature of downs (Down Syndrome) and familiar with Trisomy. Although I really wasn't sure about Trisomy I heard the name before but not any true details...that would come...

I didn't mention the conversation with Ed, just tucked it away in my mind ans focused on viewing the radiology scans she was about to show us. It was just after 11:30 am and within an hour the transport team from CHOP had arrived. By 1pm our daughter via ambulance was in transport to CHOP.

I had obtained a discharge approval from my doctor's and was out the door behind her not too long after.

We arrived at CHOP in the early evening with all the kids in tow. Alyssa we were told was stable but still intubated. We stayed as late as we could with the kids and then left for home. It was hard leaving her and not clearly knowing what was going on...

Our Pregnancy

2008-09-08T11:56:00.006-04:00

picture taken at 38 weeks pregnant

Once realizing that I was pregnant, we confirmed the due date which was July 4th 2008. Due to my history and our recent miscarriage I had frequent blood work and ultrasounds until early December. Once the pregnancy seemed well established, we began routine prenatal care similar to any other pregnancy.

(picture taken at 8 months pregnant)

1/24/2008: Lab work completed for quad screen. Results indicated that the screen was negative for fetal OSB (open spina bifida), down syndrome and Trisomy 18. The report indicated in part: that the combination of maternal age, AFP, HCG, and uE3 idnetifies 60% of Trisomy 18 pregnancies. The Down Syndrome and Trisomy 18 screening are considered investigational. This report was generated by LabCorp.

2/25/2008: Ed, Ethan, Jessica and I went for the 20 week ultrasound. It was a beautiful spring morning a slight chill and breezy. The report indicated a live intrauterine pregnancy with no fetal anomalies. The intracranial, thoracic,abdominal, and skeletal structures visualized are normal in appearance. The spine and umbilical cord insertion are unremarkable in appearance. There is a four chamber heart with a regular rhythm and rate at 141 beats per minute. The placenta is anterior in location with out evidence of previa. Amniotic fluid volume is subjectively normal. Three vessels are see in the umbilical cord. Ultrasound measurements in agreement with dates 20 weeks and 2 days.

February 2008 - June 2008 : The very next day (2/26/08) I fully came down with what I thought to be a cold, but turned out to be a very bad case of bronchitis. I was nearly hospitalized , however with much pleading was placed on bed rest for 4 days with medication. Throughout the pregnancy I did notice minor things that were easily explained away. I didn't feel a lot of movement but I had an anterior placenta which I was told could block the feeling. To onlookers I didn't look pregnant or as far along as I truly was; but considering I give birth to 5lb babies not getting huge was not unusual. My eldest son was a preemie (born at 34 weeks) and weighted 5lb 10 ounces and the next born at term weighed the same. My eldest daughter born at 38 weeks was 5lbs 8 ounces. My kids plump up after birth! I had nausea, morning sickness, headaches, and/or dizziness throughout the pregnancy. Some days were worst than others, but some ailment was there and a good reminder of my pregnant condition.

6/5/2008: During my routine prenatal exam, the doctor couldn't determine the positioning of the baby. I was at 35 weeks 6 days (I gave birth to a footling breech baby vaginally prior at 34 weeks) and the doctor wanted some assurance to the positioning of the baby. An ultrasound was scheduled for the next week.

6/10/2008: It was noted that the fetal heart rate was 134 bpm. That my amniotic fluid was mildly increased at 20.5 and the placenta was anterior. The baby also measured a week smaller in most areas except for the head and abdomen which was 6 weeks smaller (29 weeks 5 days vs. 36 weeks 5 days). Fetal weight was estimated to be 4lbs 2 ounces. None of these findings were brought to my attention at that time, as a cause for concern; I only discovered the information after obtaining a copy of my medical history.It was from the findings in this ultrasound that was scheduled for weekly non stress tests (NST).

6/13/2008: Returned to the office for a NST. upon failing the NST a fetal biophysical Profile (FBP or BPP) was completed. A BPP is an ultrasound in which a tech assess fetal well being (how well the baby is tolerating being on the inside). A score is given during the exam for movements and fluid volume. 0 to 2 points are given for the four assessed areas. At this exam the baby scored normal or 8/8. My report amniotic fluid level was 12cm

1. Normal episodes of fetal breathing motion (b/c babies don't actually breath inutero) were observed: 2

2. At least 3 discreet body/limb movements were seen: 2

3. At least one episode of active extension/flexion identified: 2

4. The amniotic fluid volume is qualitatively normal with at least one pocket measuring 2 cm in two perpendicular planes: 2 points.

6/20/2008: Returned for another NST, and failed. A second BPP was performed and again the baby passed. My amniotic fluid ranged from 13.5 cm to 18.7 cm at this exam; the higher amount is considered a mild increase. My chart indicated that I have a history of polhydraminos (too much amniotic fluid) again I didn't discover this until I reviewed my chart.

6/25/2008 : Routine exam with NST and passed. Due date is 9 days away!

7/1/2008: Went to the Labor and deliver floor of the hospital for an NST and BPP ( a doctor wasn't available at the office). I had felt a decease in the movement I was use to from the baby over the weekend. I didn't feel any movement the night prior. This exam was completed by the doctor on the floor and we passed. I was told that the anterior placenta and fluid level was most likely blocking my feeling of the baby's movement.

7/2/2008: Routine exam. Since I was seen in the hospital the day before the NSTwas skipped. since early June I'd been 1-2cm dilated and 505 effaced. These measurements remained the same. Due date 2 days away!

7/10/2008: Still pregnant and surprised to be! NST completed and passed. Scheduled for induction on 7/11/2008.

7/11/2008: Hospital full. Induction postponed until Monday 7/14/2008.

We were sad to on two accounts for this change. 1. We were excited to have our baby of course and 2. Brandon our son/nephew was scheduled to move to his birth mother's home on Saturday the 12th. We had hoped that he would have been with us for the birth of this baby. However that was not the Lord's providence and we soon find out why...

The beginning

2008-09-07T01:38:00.005-04:00

The verse I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14 became a daily devotional for me back in September 2007. I had a miscarriage over Labor Day weekend and when I returned to work reciting it, and meditating over its' meaning gave me comfort. Gradually the verse was replaced with the thought ..by God's grace-It 's by God's grace that I was given the pregnancy and it was by God's grace (even though I was ignorant of the purpose) that the pregnancy had ended. Knowing these things helped me to move through the grief and focus on my life at hand (caring for 4 kids ages 11, 6,5 and 1 at the time).

This was an early miscarriage (in my 1st trimester) so physically I bounced back without a blink. Don't get me wrong I realized that my ability to deal with everything as I had was not typical; and all I can say it was by God's grace. This was not my first or even my second miscarriage; so I am familiar with the grief . My first loss was at a time that I was unsaved and I was angry over the loss. With my subsequent losses I had some common grace and was able to find "meaning" in them. This was the first time I had experienced a loss having saving grace and being a Christian mother. I believe this accounts for the difference as well. Anyhow we had a lot going on the usual things the start of kindergarten for one child, another child going to a new school after being home schooled; pre school; family activities.. you know the drill.

We also had an ongoing trial with our 6 year old. We had raised him from birth as our son, but in fact he is our nephew. The adoption process that was started within hours of his birth remained incomplete for reasons beyond our control. Things progressed to the point that we were preparing for him to leave our home. So in summary at the beginning of the year (as a mom I go by a school year calendar) we lost a child to a miscarriage and then at the end of the year (July) we were expected to lose another by way of parental rights. Lots of stress...I didn't have time to focus on feeling bad.

Which is probably why I hadn't noticed the signs and symptoms of a new pregnancy. Wonderfully within in days of our loss I became pregnant again. We didn't discover the pregnancy until a bit later, but this was the start of a journey that we could have never imagined.