That Was Then, This Is Now...

7-31-06

7-31-07

It is so hard to believe that our baby is already a whole year older. So much has happened in the past year that its hard to believe it has only been one year. There is a huge difference between then and now. We can only pray that Sam continues to make gains on a daily basis so that he can enjoy this life just as much as everyone else. I think the key to help make this next year of Sam's life a happy one is just accepting everything the way it is now. Of course we will continue to fight to give Sam the best chance he has in life. But as Sam gets older and smarter he is going to see that he is different from other children. It is important to me that I accept what his differences are (and I do) whole heartedly and that if he sees that I am OK with is differences then he will be OK too. I mean what is happiness anyway??? In my opinion happiness is accepting ourselves for what we are and who we are no matter what our limitations are. Our goal for the next year is to let Sam know that he is a super hero no matter what challenges he has in store. If Sam can eventually swallow, talk, walk, dance, sing that would be great, but if he can't do those things then that will be fine too. As long as our baby is happy, healthy, and smiling then everything is perfect and so is he. Happy Birthday to the most beautiful and perfect baby boy!!!

Who Had More Fun?

For those of you that think you know Scott, I bet you didn't know this. Did you know that Scott's favorite two things in the world besides chicken parm and Sam are hippie folk singers and Elmo? Scott had so much fun at the party that he did not stop singing Elmo's world for the next 24 hours. If I didn't appreciate the love my husband has for our baby then I might have thrown him out the window already. Scott is truly the best Daddy in the world and if it wasn't for him then I might not have had the strength to throw such a big party for Sam. People often ask me how I keep going everyday and do what I do with a smile on my face. My answer is always because I have Scott and Sam.

Sam's Birthday!!!

We had Sam's birthday party this past Saturday. Thank god Sam did really well. He truly enjoyed himself and it did not rain!!! We had all sorts of fun things going on for him at his party. Sam got to see all of his friends and family. We also had some old visitors come to sing to Sam. While Sam was in the hospital these two wonderful women use to come and do music therapy with Sam. This is how I realized that Sam might not be deaf after all. We were told initially that Sam was completely deaf in his left ear and had a moderate to severe hearing loss in his right ear. But when these women sang to him he lit up like a Fourth of July Sky. So I hunted these ladies down and got them to sing for Sam's birthday. He loved it. We also had Elmo come to play as well. If you haven't noticed Sam loves Elmo. Scott and I wanted to thank all of the grandparents for helping to make such a beautiful party for Sam and we also wanted to thank all of our friends and family for coming to celebrate with us as well.

Coma

Last night I had a major anxiety attack and basically didn't sleep all night. Why? That story for another entry. Anyway at around 2 am I was watching an HBO documentary called "Coma." It brought a lot of very deep dark feelings back of when we were in the NICU with Sam. If you haven't seen the program (and I call it program and not show because watching the fate of 4 individuals struggle with rehab after severe traumatic brain injury shouldn't be considered entertainment) its intense to say the least and very, very sad. What hit me the hardest was how the parents of the individuals were told about the fate of their kids. Now the people that were injured seemed to be 20-30 something. Their whole lives pretty much would never be the same and all of their loved ones around them had to suffer the trauma of basically losing the person they loved and excepting someone else in their place. Certainly someone that they love no different but a completely different person. These young adults would never talk the same, walk the same, some lost their hearing, some lost their ability to eat, some lost their eyesight, and some lost all of the above. There were several points in the program where the families would sit in a conference room with a team of health professionals who were basically telling the families the fate of their loved one. What pissed me off was the overall expression of "oh well." And I got that sense by the body language and the actions of the doctors and therapists in the meeting. One total waste of a person sat there playing with an empty water bottle, others were eating and drinking coffee, and someone else was chewing gum. Now until you walked in my shoes or the shoes of anyone who sat in a meeting with a team of doctors telling you some awful news, you know how incredibly disgusting that is. This struck such a cord because I remember all too well at Columbia the very same situation. Most of the people in my meeting (and we had many) had coffee or they were trying to sneak pieces of food in their mouths, while the neurologist told me that my little gorgeous precious Sammy probably had Leigh's Disease. If you don't know what that is, its a very rare degenerative metabolic disease where children don't usually live past four. And the years leading up to four are dreadful. Back then I was weak and naive. I accepted what ever behavior the doctors and residents gave along with their pseudo diagnoses. Now things are very different. I hit a tremendous wall of tolerance months ago and I refuse to take bologna from anyone including a physician. But I do have to say Sam's team of doctors presently working with us are nothing but respectful and just lovely. They all really go out of their way to assist in any way they can. And if they didn't then they wouldn't be on our team, would they. My point in this entry of reflection is if you are a health professional think twice before being so casual when sitting in a meeting with a family when bad news or any new is presented. And if you happen to be on the unfortunate situation of being on the receiving end of one of these meetings and someone is drinking their Starbucks say this "Unless you want me to order a pizza and a keg of beer on your death bed get rid of the coffee and show some respect."

Cuevas MEDEK Exercises

Sam in his stander

Sam doing CME

Sam just started receiving a new therapy called Cuevas MEDEK Exercises (CME). He is doing really well with it so far. There are a lot of parents and therapists that swear by this technique for even the most severe cases of movement disorders. These are some informative sites for CME the testimonials are very encouraging. Sam also started with is stander today. He did fairly well with it considering it was his first time in it. I've added some pictures so you all can see.

http://www.cuevasmedek.com/

http://www.netaxs.com/~iris/medek/

Appointments, Appointments, Appointments...

Wednesday we had an appointment with Sam's ENT. During the examination Sam repeatedly grabbed the tongue depressor and the pen light and refused to let our doctor do what he had to do. My son was so incredibly quick with his hands and tight with his grasp he reminded me of Bruce Lee. This might not sound that exciting to most people, but you have to understand, my child cannot hold objects tightly at all especially sitting up right. Sam also sat up for a good amount of time with very little redirection for balance 3 different times during the day. Thursday we took him all the way to the Bronx for OMT clinic for movement treatment, where he did not cry at all. Then when we got back home Sam had 5 therapy sessions in which he did wonderful with and barely complained at all. One of the sessions was with our new therapist who does a new technique called M.E.D.E.K. This can be a very scary thing for parents to watch because the therapists do a bit of a more invasive technique versus conventional physical therapists. Sam loved it! Even with such a busy day Sam was still able to smile at the end of it.

What is normal?

What is normal anyway??? According to any standard dictionary the word normal means
conforming to the standard or the common type; usual; not abnormal; regular; natural.
Serving to establish a standard. I think getting to the level of acceptance when you are faced with issues such as ours is establishing your own set of norms. Many people in our lives including my husband and I often say phrases such as "Well, if this was normal..." or "If Sam was a normal child...." This is our normal. We don't know any different and neither does Sam. Normal to us is Sam's feeding tube, suctioning machine, floppy body, crooked smile, open mouth posture... Sam's milestones and successes may be different from other children's, but its 100% normal for us. We relish in the fact that Sam is reaching and sitting even if its for very small amount of time. Every tiny bit of progress is a miracle in our eyes. Yesterday Sam sat unassisted while I sang the entire song of "Down on Grandpa's Farm" using four different animals. Today while Sam was in the exersaucer he started to get fussy so I said "Tell mama out" and sure enough he said "ou" while reaching up.

Yesterday

Yesterday Sam stood with very little support with one of his therapists. He was always able to bare weight on his legs but never for this long and certainly not with this little support. Sam also was never able to hold his upper body up like you see in the picture. We had another small miracle last night as well. Sam said "more" perfectly while we were playing peek-a-boo. He has always voiced a pseudo more but was not able to say the "m" sound. But he did last night, YEAH!

Slide Show

Sam's very fabulous pediatrician created a beautiful slide show of Sam on his web site. Click the link below if you are interested in seeing it. Happy Fourth of July.


http://www.drmdk.com/html/lesh.html

Luck

I haven't posted in a while because Sam, Scott and I were all sick for the last few days. We are all fine now, just a cold virusy thing that lasted for only a few days. Anyway, a lot of people have been giving us credit for working so hard to find Sam the best team of health care professionals. We honestly cannot take much of the credit. Believe it or not through prayer and a bit of luck most of Sam's health care providers literally fell into our laps. While Sam was still in the hospital and Scott and I were contemplating moving to Brooklyn, my mother was in the midst of selling her house in NJ. My mother's real estate agent is the wife of a great pediatrician, Dr. Koplow, in Brooklyn. She insisted my mom call him and talk to him about Sam. To make a long story short we moved to Brooklyn and Dr. Koplow is Sam's pediatrician. He referred us to some of Sam's specialists who are also fantastic. On a side note there are a lot of friends and visitors out there that ask me a lot of developmental questions about their children. I would be happy to help in anyway I could but to be honest I get a lot of information from Dr. Koplow's website. Our pediatrician has an amazing informative website with links that could guide a parent to a wealth of information from breastfeeding to vaccinations to autism to bone marrow transplants. The website has a lot of video commentary from some of the leading researchers working on the hottest topics in children's health and development.
www.drmdk.com

Sam's Therapy Plan

A lot of people have been asking me what we do with Sam and why. Some people even have said that all that we are doing with Sam may be "too much." Kind of like we are groping at straws. Well maybe at the beginning we were. We actually had a healer come and work on Sam. Don't ask, it was what we thought was appropriate at the time. You can't really blame a parent for putting faith into something that they think would help there child. Wouldn't you do anything you could to help your child no matter what the issues are? But now after months of collaboration with doctors, therapists, other families, my former professors, etc... I am pretty sure we have a great therapy plan with good rationales to back up what we are doing. Based on recent studies it was found that with an enormous amount of therapy/ intervention a person's brain (child and adult) can rewire itself to compensate for certain deficits caused by brain damage. Some of the studies even specified that 70-100 hours of intervention to the specific area affected can rehabilitate the issue at hand to almost 100% functionality. Of course there are certain variables to this but never the less the point is that intervention is key. The earlier one receives intervention the greater the chance of recovery. So what do we do with Sam? Sam receives, through early intervention, 4 times a week each of feeding/ swallow therapy, occupational therapy, physical therapy, and special instruction for 30 minutes a session. That is a total of 16 sessions a week. In addition, we privately pay a cranio-saccral therapists for a session with Sam once a week. We also take Sam to the osteopathic movement treatment center at St. Barnabas Children's Hospital once a week all the way up in the Bronx which is covered by medicaid. Furthermore, we take Sam to St. Joseph's feeding and swallowing clinic up in Patterson NJ where he is seen by a group of professionals that work with only feeding and swallow disorders. I know it seems like a lot and it is but its what has to be done. I look at it like a full time job. But the rewards are much bigger then any pay check I have ever received. I still have time to play with Sam and engage with him. But at the same time I try and carry over a lot of the activities that need to be done with him while we have mommy baby time. I remember when I was working as a therapist I would expect a lot out of the parents I worked with. Now I know how daunting it is to try and be your child's parent and a therapist on so many different levels. But you have to do what you can when you can. You can't just drop your child off with the therapist and say OK fix my child I'll be back in an hour. It doesn't work like that. Rehabilitation of any kind is a 24/7 job that everyone needs to participate in.