Friday, September 28, 2007


Ok, I am really not as miserable as I may sound this is really my only outlet so it all compounds here. Here is a little bit of a more up beat participatory entry. My good friend and supporter "Joe The Minister" has an awesome blog. I can't help but to copy a little of it. Every friday he started a little trend where he asks his friends a question. Here is mine...
What is the best 1/2 hour sit com ever made and why do you think so???

Thursday, September 27, 2007


I haven't really been able to write much in a while. Things are always quite hectic around here. Sometimes just trying to balance my own needs, Scott's needs, our home, and of course Sam, can get a bit crazy. So when I have to prioritize, the Blog doesn't really take a front seat. I apologize if I just start writing about how frustrated I am without letting everyone know what positives are going on as well. But as my late Grandma Nettie use to say "If you don't like it, don't eat it."

Sam is an amazing baby. He is deeply intuitive and incredibly strong. Sam is also very intelligent. He is playing ball rolling it back and forth, in the best way that he can. He says "go" better and better everyday given a "ready... set..." cue. He is socially smiling now very easily and he rolls to me for comfort when he doesn't want to be annoyed by someone else (Grandpa Dave). My cousin Oren is visiting with us from Israel and we took Sam to the Aquarium yesterday. Sam was completely enamoured with the sharks and the fish in the tanks. But he really showed a special interest in the sharks. In my professional opinion this is a clear sign of cognitive ability. Unfortunately Sam's physical ability is really delayed and it impedes on what he needs to learn and explore cognitively. Which means that I have to assist him with everything. I know, I know... he will get there. Well no one really knows that for sure. But what I do know is that if people keep telling me "oh don't worry Sam will surprise you," or " he will be fine," I am going to go postal. It is so unbelievably presumptuous for anyone to tell me that. Besides if I listened to all of the know it alls then what am I supposed to do sit around with my thumb up my rear and wait for it to happen. No! We have to keep doing what we are doing.
I will post more pictures soon. My camera has been kind of out of commission but now its working again so pictures will be coming around soon.

Tuesday, September 25, 2007

Roller Coaster

My life is such a roller coaster ride I feel bipolar. How much can I bare. Sam's care is so incredibly high maintenance. We went back to the feeding and swallowing clinic today. The visit wasn't bad but it wasn't that encouraging either. Nothing is that encouraging really. There is just too much. Sam is swallowing yes, but not often. Half the time he doesn't even realize there is something in his mouth that needs to be swallowed. But let's say he starts swallowing more, then there is chewing, and speaking, and language, and sitting, crawling, walking, potty training, etc... Things that most parents take for granted. My child is probably going to need a computer to speak for him and god only knows what other kind of assistive devices to cope with daily living. When people have babies you wonder is my child going to be a doctor, a lawyer, the next president... Who wonders if their child is ever going to speak, walk, swallow??? There is just too much to deal with. I know, I know, god only gives us what we can handle. Well if this was true this means that I must be better then the rest of the world and everyone else is incapable and incompetent. So I win, I get the prize, I am the strongest most capable person in existence. But I think I'd rather be stupid and happy then brilliant and miserable. Oh and the line god only gives us what we can handle is one of the absolute worst things anyone can say to a parent with a child with special needs.

Monday, September 10, 2007

Modified Barium Swallow Study

Today we took Sam up to St. Joseph's Hospital for a test to see if he is swallowing, how he is swallowing and if he is doing it safely. The days leading up to this have been full of tremendous anxiety. I didn't even want to talk about it with anyone because the thought of what the test might reveal made me sick. All of us that have been working with Sam have suspected that he was swallowing but just for definite confirmation we really had to do this study. This study also gave us an idea of how we should proceed as far as treatment goes. So the results revealed Sam is DEFINITELY without question swallowing, but he is aspirating and he is having a tough time using his tongue to bring material towards the back of his mouth to swallow. So in other words we still have a very long road ahead of us before we can even think about taking Sam off of his feeding tube. However, these results also make it more promising that he will eventually get off of it some day. When Sam was first born he did not display any evidence of swallowing at all, he didn't even have the reflex. But we now know that he does, so we were pleased with the results.

This whole process was very scary for me. Thank god I had a lot of support with me today. Sam's speech pathologist that has been working soooooo hard with Sam joined us and so did Sam's nurse. It helped a great deal to have both of them there. What also helped a great deal was the staff at St. Jo's. I have to say I was so incredibly impressed with how helpful the entire staff at that facility was. Everyone from the valet parkers to the speech pathologists that conducted the study. Everyone was beyond kind.

So now with the new knowledge that we learned today I have more energy to keep trucking and doing what we have to do to give Sam the best shot he has.
P.S. Thanks for the great picture Mary!