Friday, July 15, 2011

Birthday Girl!

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
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!!

Sunday, April 24, 2011

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 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

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!!

Monday, March 21, 2011

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!

Saturday, February 5, 2011

Happy New Year!

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/ 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.