Potpourri

I am sorry for not posting in so long. This week has been beyond busy, busy, busy...

Monday morning I woke up on a mission to make sure Duke University knows they are taking Sam in for Stem Cell infusion. I called only 30 times until I finally spoke to the person in charge. Sweet, sweet women, I kind of felt bad that she had to deal with me. I started off by telling her who I was as she has only spoken to my father-in-law and Scott. Then I start hysterical crying telling her that the fate of my son is in her hands, I'm hanging on by a thread PLEASE just give me a potential date that you are thinking about getting us in there. So she tells me hopefully sometime in August. OK (sigh), August is good, tomorrow is better but August is good, we'll take August.

The rest of the week consisted of a lot of running, Sam's therapy, planning and organizing for Passover.

Did I mention we got a new car??? Sam loves it, which is more than I can say for myself. I like it, but hmmmmmm.... not really what I thought I'd be driving EVER.
OK folks, are you ready to see it. Here it is The Leshin Family Truckster!



Oh and last weekend was Mama Leshin's 60Th Birthday party. It was a lot of fun and it felt great to get dressed up and go out. Scott and I became a little over zealous and drank too much, but it was nice.



And yes, I got fat. I am not ashamed to say that I gained 8 pounds being stuck in the hospital eating chopped liver and pastrami from 2nd ave Deli heheheh... Sooooo good YUM. And now I am on my diet health kick, yogurt, egg white omelets and lots of exercise. I am already down 3 pounds. Go me YAY!

Your In The Right Place

I got bored with the scenary so I had to change things up a bit. I hope you like...

Information

For all you parents out in cyberspace I have a GREAT website for you.Sam's pediatrician, Dr. Koplow, designed this website to answer and inform parents about every single thing possible regarding your children. Anything from breast feeding to potty training, to cancer to autism... EVERYTHING is on video taken from some of the top doctors in the country. Check it out... http://www.drmdk.com

Lost

Who watches Lost? Anyone? Everyone? Scott and I can't have much of a life outside of our home. We cannot commit to certain TV series because of our day to day chaos. Soooo we started renting series through Netflix. AWESOME! We actually started out watching 24 as our friends Nestor and Debbie got us totally addicted. We watched all 6 seasons and loved them all. Once it ended Scott and I didn't know what to do with ourselves. So we started renting Lost. We are only on the first season, but my god is it good! Don't tell me anything but I have 2 questions for those of you that watch it: 1) Is the show actually still running, what season?
2) Does it stay this good for the next few seasons to come? If you haven't seen it I recommend that you start renting it from season one. It will change your life!

What's Next!

SO now that we are home and settled in we are on to the next project. While we were in the hospital The Today Show did a segment on Cord Blood in-fusions with children with Cerebral Palsy. This has been around for a while but not in this country and not with a child's own cord blood. Duke University started doing this with a child's own cord blood. Of course as soon as we heard this and I mean with in the first 5 minutes Scott and his dad were on the phone with NBC, the reporter, the family they did the story on and Duke University. Everyone was so kind and accomodating especially the family. TO hear this news of a little boy with so many developmental delays (less than Sam) improve so much within the next 5 days after treatment added such a tremendous light of hope for us. I mean if it worked for this sweet little boy why can't it work for us too. Miracles happen everyday, why not to us. Even if this insfusion helps Sam swallow enough so that we don't have to worry about choking, or that it helps him move a little more, or talk, or wave, whatever... Anything will be a miracle. Of course I am hoping for The Cure! But I will take any improvements. The thing is we have nothing to loose. Scott and I decided to save the cord blood shortly after I became pregnant. If you can afford cable and a cell phone than you can afford to save your baby's cord blood. Regardless of what the research tells you about today, saving a child's cord blood can mean the difference between curing a devistating illness, paralysis, brain damage, etc... later in the future. The possibilities with cord blood in the future are endless.

SO the prayers for Sam certainly worked in the hospital and we are so grateful for all of them. Now I am asking to please pray that Duke even accepts us and that we will see tremendous improvement from this very safe non-invasive procedure. Here is the link to the story. http://www.msnbc.msn.com/id/23572206/

Correction...

Sorry if I misinformed people. Sam definitely had a stricture/ blockage where formula could not pass despite the type it was. After the stricture had subsided Sam continued to have difficulty but of a different kind. He was more bloated and gassy and pretty much uncomfortable. At that point we were only feeding him 15ccs/hr. We needed to get him up to 30 in order to get home, but because of his discomfort we could not advance and this was on Wed. Thursday I spoke with another mom, whom I wrote about, that mentioned the difference in absorption between my formula (Peptamin Jr. unflavored) and the formula the hospital gave us (Peptamin Jr. vanilla flavored). Once I went home to get my formula which was right after I spoke to her Sam immediately began to tolerate 30 ccs over a 12 hour period. That is why we got to go home Friday. Had we have given him the unflavored formula starting Tues. we probably could have gotten him home Wed. night. Either way it all worked out and everything is fine.

Home At Last!!!

Yup, we are HOME!!! So the reason it was taking so long to get Sam up to his nutrition mandate was because the formula the hospital was having us use (almost identical to our formula) was a bit different than the one we were using at home. Which means Sam was getting gassy and uncomfortable because his system wasn't digesting it properly. So how did I figure out that the key to getting us home earlier than Sat. or Sun depended on the formula? The doctors... no, the nurses...no, the nutritionist...no... The answer is another parent who has a son in a very similar situation and is so unbelievably knowledgeable. Who would have thought that one tiny little differnece in my son's formula would have had such an incredible impact on his system. When I told the doctors and nurses they said wow, never thought of that, it totally makes sense. So look we all learn something new every day. Glad to be home... Stay tuned for our next venture. We will let everyone know what is up our selves next for Sam. We we have an exact date then we will let everyone know what we are doing. Thanks you all so much for your prayers and well wishes! Happy Purim, Happy Easter.