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Feeding evaluation diagnosis and more

Posted Sep 01 2009 5:51pm
Wow...so many updates to talk about. Lets start with...me. Ha. My twin and I turned 40 over the weekend...wow...the big 40. Why does it seem like just yesterday we were celebrating our 20th?! So much has happened in those 20 years...been with our husbands for that long...had kids, pretty much became adults...wow. Some great times...I mean, really great. And also some that I wish never happened. What we get handed in life...what our lives get shaped into from the age of 20 to the age of 40 is crazy!!! I never thought that by 40, I would still be living in the same house that we bought, just Tony and I, a year before we got married. I never thought that I would have 8 kids along with 2 miscarriages...never, ever even dreamed it. I never thought I'd see so many people come and go in my life...enjoying and happy that I got to meet every last one of them...really...from the people that I went to school with, used to work with years ago to my mom friends at the kids school and on line friends.... just everyone. I feel very blessed that each and every person has touched my life, somehow.

On to Kenny...he has officially been evaluated for feeding therapy...and needs it...BADLY. The evaluation started with a group of docs and such wanting to know everything...from when I was pregnant with him and Nick to present time. Reliving and telling everything was very hard for me. Brought back so many memories and feelings. I hate doing that! They then wanted to see how he ate, so they put us in a room (kitchen like) with a highchair. They warmed up a tray of finger foods and told me to feed Kenny like I would at home. Thank goodness it was 11:00, because he didn't eat and was pretty hungry. Anyhow, I gave him tater tots and he was eating pretty good...well...he put pieces of them in his mouth and was making the motions of chewing...when in fact, he was just pocketing the food in there. When his mouth was full, he'd spit the food out and start over. This went on with the beans, spaghetti o's, bread and fruit pieces. It was the typical behavior...put it in, pretend to chew and then, out it comes..or he'll keep it in there for hours...very frustrating!!! He wants to eat so very badly. He wants to be able to do what is normal. He just isn't able to. How do you teach a child to chew his food with his teeth and then swallow. That stuff is supposed to come naturally, isn't it?
So their findings were exactly what I expected....he cant eat. Medical reasons are: being intubated for so long, the roof of his mouth is very high (his palate). Secondly, he is hypersensitive to temps and textures in and around his mouth, but hyposenitive to things being in his mouth. He was born so early, he cant connect with the fact that he has to chew (which doesn't mean move your mouth open and closed) with his teeth and then swallow what is in there. With pureed foods, it just slides down his throat. THESE are the things that the doctors DONT tell you when your baby is fighting for their life in the NICU...the everything that will happen or find out when your micro preemie is home...home for a few years. They are also going to be sending Kenny to an ENT for those nasty ear infections he's been getting. At which, they also mentioned the Cochlear Implants for him. What next? *sigh*
So, he will be getting intense feeding therapy 1x a week, at the clinic and then I have to work with him the rest of the week. Ohhhh joy, a new challenge for me! This is going to be a long road with him, but I am praying that he will be able to chew and swallow. I am scared for him, I really am.
SO, on the same day as his feeding eval, the genetics specialist called me to tell me that they found just a very...yes she emphasised teenie tiny, very small section of chromosome 17 is missing. WHAT? ummmm....ok? How the heck did this happen? She didn't go into anymore detail except to say that it might be normal for him, if one of us has the missing piece...so we should get tested. And that was it. So now I am stuck with this piece of information...of course, I go and Google it to find out what does this mean...I shouldn't have done that. I am scared for my little guy even more now. So what will these finding mean? I am not sure. It's not going to make him any better. Its not going to be able to fix his lungs, his hearing, his muscle tone, his delays or his eating. What we will have is yet another "diagnosis" for him. Which will at least stop me from wondering....I think. I just want my precious little Kenny to be the best he can be. He is already walking while holding hands...not steadily, but he is doing it. This is after doctors told us that he might not walk.
I have high hopes for my kids, and all I can do is pray that their lives are fulfilled. Full of love and success in what they make of it. I say UGH to this journey called life...its a little harder than I thought it would be, but am making the most of it as I can. God gave me a good 40 years of life so far....extremely busy, lots of sorrow but also love and courage! We don't have money or tons of things, but I do have 7 wonderful living children who all have very different personalities, wants and needs. I also have 3 angels (my Nick and 2 others from miscarriages) watching over our family and hanging with those loved one that have passed on. I have a wonderful loving and caring husband who I just admire and love to the ends of the earth and beyond! I have my parents (and in-laws), sisters, and friends whom I love so much...thank goodness for Facebook so we can all keep in touch and "talk" every day.
So...I forge onwards to another year...what will my journey though life bring next?
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