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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.

PROCRASTINATION!!!!!!

I have so much to do for work that just thinking about it makes me dizzy... What the hell was I thinking when I decided to go back to work??? Honestly I love it but now I need to play the procrastination game. Sam is in school, Judah is with his nanny and me sigh... I get to breath deep with a minute to myself.

So did I ever tell ya about how Scott and I first started dating??? I didn't... Well then let me tell you...

Scott and I have known each other since we were 10 years old. Yes I know how romantic but I can assure you we did not start dating until 13 years later. Scott was quite the obnoxious wisenheimer back then and I didn't like him very much. Years later we both graduated from college and moved to NYC. Because neither of us knew many people we often hung out just as friends. He would try and fix me up with other guys I would try and fix him up with other girls... But it was always interesting that when things didn't quite work out with the other guys Scott would get a little too excited over my disappointing date life. One evening Scott and I went out to dinner. It was the night before he was going on vacation to Italy. After dinner we walked to a local bar for a drink where he stopped me in the middle of the sidewalk right in front of Sparks and he kissed me. Well at that very moment I knew without a doubt in my mind that Scott was going to be the man I was going to marry. I don't know how I knew it but I just did. Its funny how a split second can determine the rest of your life for the good and for the bad. But in this case of course it was for the good. He left the next day for Italy and a week later when he came home everything just unfolded naturally. In fact the first time I saw his parents after we started dating, which was very shortly after that first kiss, they told me I could call them mom and dad... Whoa... slow down Leshins... But then later I realized that Scott never brought anyone home before and his parents were just so ecstatic that Scott brought home a girl... Ha...

I am so proud to be married to Scott. He is such a great person and I love him so much! He is the best dad with the exception of my father who is also a great dad and Scott's dad who is another great dad. OK this is going no where. I am going to get back to work now.

Sam's First Day of School!

I never would have thought looking back that Sam would be able to go to school at 3 years old. We are so happy that we found such a beautiful program that can provide Sam with all of his needs including medical needs, therapeutic needs, and academic needs. Sam started school yesterday. Grandpa Dave bought Sam his first day of school outfit. He looked just gorgeous! He is accompanied by a nurse and rides the bus both there and back. It is a 5 day a week program from 9-2:30. Yesterday I went to the school at around 1:30. I was told that Sam had a great day! He did not cry at all and he participated in all classroom activities. When I got there Sam was reading a story on the computer. He looked up when he heard my voice then continued to finish what he was doing. After he was done they put him down on the mat and he made his way over to me to give me a hug. It really was so cute. I was told he was good as gold and so attentive. We are so proud of him!!!