Happy Birthday My Beautiful Angel

I wrote this on Sam's 1st birthday... I remember vividly that wonderful day in October 2005 when I found out that I was pregnant. It was truly the greatest day in my life. I was so excited but I did not want to call anyone. I wanted my husband to be the first to know and I wanted to see his reaction in person. I anxiously waited for him to come home from work. I left the results of the pregnancy test on the bathroom counter. Scott came home and went to wash up in the bathroom and noticed the test. He then came running into the other room ecstatic. Then the calls began and the dreams and planning began too. Over the next few months we started looking for furniture and clothes and all the wonderful things you do while you are waiting for your precious child to arrive. Scott cleaned out the second bedroom in our two bedroom apartment and began painting. What a great time in our lives… Then at around 8 months into my pregnancy things started to take a turn for the worse. My pregnancy was not going well. My tests came back abnormal and no one knew what the issue was. We anxiously awaited the arrival of our baby with tremendous fear. The dreams became nightmares and the anxiety made my husband and I sick. Then on July 31, 2006 our baby boy Sam arrived. I knew right away my baby was in big trouble. As soon as they gave him to me I noticed immediately he wasn’t swallowing, couldn’t suck, and the left side of his face did not move. After various tests and numerous days, weeks and months in four different NICUs we had no diagnosis. The doctors hypothesized that Sam had a stroke in utero. As a result he does not walk, talk or eat by mouth. He chronically aspirates his own saliva which in effect is like drowning himself every minute of every day. Since his birth we have been in and out of ERs and have had numerous extended stays at various hospitals throughout NYC and NJ. The pain is unbearable and the financial burden is overwhelming. I am very lucky to have Scott fight so hard day in and day out to get everything Sam is entitled to, be it nursing, therapy and medical equipment, therapists and doctor visits. Unfortunately though it is a fight. We do not take no for answer although that is all we here. “No your son will never walk, so why would I approve a walker”…”No, your son will never eat, so no need for the swallowing therapist to come to your house twice a week”…”No, your son will most likely not make it to ten years of age so no need for nursing to only prolong the inevitable”…”No, your dreams are shattered so don’t waste my time!” Scott and I are not oblivious to the medical realities of our son’s condition but we will not take “no” for an answer and we are willing to sacrifice our future and our dreams to make Sam’s next day a little better. This though does come with an emotional, physical and financial price. When the alarm clock goes off every morning Scott and I look at each and say “here we go again”. Another marathon to be run every single solitary day, the race never stops and there is never any reprieve. And although it is a grueling and terrible life, one I would not wish on my worst enemy, we still try and find happiness. We try and make the best out of what G-d has given us. To see Sam smile or to one day hear him say mommy is worth it. “Just make it one more day my son, tomorrow will be better.”

That was then, this is now... So today on Sam's 6th birthday things are better but still difficult and the marathon continues. As a matter of fact we have a mediation this morning with our school district to get more services for Sam that he so desperately needs. We have become much better at fighting and getting what we need for Sam and in turn Sam is doing all the better because of it. It is a hard life but it has become OK. ALl of the struggles, pain, anxiety, and heartache melts away every time we see our beautiful boy smile. Happy Birthday to the most beautiful angel in the world. May you continue to light up our world with your beautiful smile and radiating energy!

Scott's Letter to Sam

I wish you could read this letter…
Words can not express how much I love you. You are the greatest thing in my life. Your strength, determination and smile are a source of inspiration. When I get tired or down, I look to you for that extra boost. I have had such wonderful experiences with you. Be it walking to get pizza and ices or taking you on those long walks on the boardwalk in Coney Island when you were only two years old. I loved those days and I love you every day more and more. I am so happy that now we go ice skating together or those drives to Nancy’s house on the weekend when you just listen to me talk about nonsense and yell at the other people on the road. I love that you look at me and smile and I smile right back knowing that we have something very special and we will continue to share more special times together for the rest of our lives.
I want to thank you for the gift you have given me and I only hope I can reciprocate although this will take me my entire life. So stand by me Sam, I promise to be with you.
Love Dad

Cord Blood Breakthroughs

Check out this link for more info...

Cord Blood Breakthroughs

Keeping our fingers crossed!

Duke Part II

Scott and I took Sam down to NC this past Monday for his second stem cell infusion at Duke. We are actually in the out patient suite now where Sam just received his second batch of stem cells. The entire experience seems less surreal than it did the first time we came down. Maybe because we've done it already or maybe because we are not as hopeful as we once were. A year and a half ago the possibilities for Sam's future development seemed so bright. He was not even 2 years old and we were still expecting that Sam would eat, walk, talk... Obviously we still hope that Sam can one day achieve all of the things that we probably take for granted, but as time moves along the inevitable continues to haunt us every single day.

We are hopeful that Sam will progress. He definitely has made some significant gains, but he still has such a long way to go. We pray that these cells will continue to give him what he needs to make his body work better.

In the meantime he got his smile back! At this point I really cannot ask for more!

Where Did Your Smile Go???

Sam has not been himself for over a month now. He has been teething. He's been sick. He seems just overall weaker and disconnected. I can count on one hand the number of times he's smiled in the past month. Sam has also been whimpering a ton and just has this general "I give up" look on his face. We have taken him to every doctor. He has been poked prodded, bloods have been drawn twice... I want my baby back.

Next week we go to Duke for the rest of his stem cell infusion. I should be more excited but its hard for me to feel hopeful and excitement when all I feel is fear and anxiety.

Quicky

Duke is a definite. We are taking Sam down there in the middle of January. We would really appreciate every one's thoughts and prayers that all goes smoothly. Sam needs to be healthy, healthy, healthy in order for him to receive another re-infusion of stem cells so please pray for his health. I have a lot of different thoughts and feelings about this. I just hope that this re-infusion brings Sam to a better place in his development. We have seen a lot of progress since his first re-infusion; however, the jury is still out if it is the stem cells or all of the therapy he has been getting. I can get into specifics another time. Thanks so much for continuing to stop in. I know I have not been the best updater lately :).

Slacker...

Where to begin. Hmmmmmmmmmmmm...

Sam
Since I last posted we had a tough run in with Sam's feedings again. We changed his feedings to increase his caloric content and nutritional value. Needless to say it did not work and Sam was in a bad way for about a month. Because of his intolerance to the new formula he vomited a lot. At one point he vomited on his bus on the way home from school, aspirated, lost conciousness, and needed to be rushed to the hospital.

We are in a much better place now with Sam. He is doing amazing in school. He is talking using a computer, walking using a special walker, and all of the girls love him in his class (he's the only boy). You know that they say...pimpin ain't easy!

Judah
Judah is a Buddah. He is almost six months and weighs about 20 pounds. He is holding his own bottle, pushing up on all fours, crawling backwards and can sit by himself. Go figure... He is a happy little guy that just loves his big brother.

Scott
Scott's doing well. He just had someone put in storage units into the garage so he is as happy as can be. He has been organizing ever since. The OCD has kicked in overdrive. Personally I'd rather have light fixtures in my kitchen and dining room... Oh well, pick and choose Carrie, pick and choose.

Me
I am working, working, working, and working. By the way did I mention that I was working. I am happy to be working again. It is very difficult to balance everything but I think I have the swing of things at the moment. I am doing some hours at a local hospital, seeing private patients, and teaching grad classes again. I am almost done with this semester and in 2 weeks I do another semester.

On a side note... Scott touched base with Duke and it looks like we are going back down there in January to use the rest of Sam's stem cells. Apparently there is a high correlation between the amount of cells one uses and an increase in progress. They suggested that we go down there so it looks like we are headed there next month.