Tuesday, September 28, 2010

Sad news from Mike and Melanie...

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.

Monday, September 13, 2010

Alyssa's 5K Key Note Speech

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


Tuesday, August 31, 2010

Alyssa's 5K went great!

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!!

Thursday, July 15, 2010

HAPPY BIRTHDAY 2nd ALYSSA!! Random Pictures

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!!


































Saturday, July 10, 2010

One week and counting...





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!




Wednesday, May 26, 2010

Alyssa's feeling better and back to her old ways


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~~

Tuesday, May 11, 2010

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


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!!

Monday, April 26, 2010

Some random pictures

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...












Monday, March 29, 2010

Oh and by the way....

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!







Sunday, March 21, 2010

Quick update

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.

Friday, February 26, 2010

Updates

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.


video we continue to work on feeding orally!!


video just listen to her!

Wednesday, January 27, 2010

ALYSSA'S 5K LOGO ART CONTEST

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/