Friday, April 30, 2010

Just a few updates on Kenny

Yesterday morning we (Tony and I) had a meeting with all the teachers/therapists/special ed teachers that will be working with Kenny. The appointment went really well. Kind of overwhelming with all the talk of what he needs and what he'll be getting, in terms of his therapies and education. He is approved for 4 days a week, 2 1/2 hours a day for special ed/preschool. They will be working with his severe hearing loss (click on the highlighted words to see the web page that shows what it is all about!)by teaching him signs, and working with him to start forming more words to show us what he wants. They are also getting a FM system for him personally. They worked out an IEP for him which includes cutting with scissors, riding an assisted tricycle, climbing, following simple directions, etc... He will be going the month of May for OT/PT/Speech and then starting in June, he will be going to "summer school" .They evaluated him at being between 8-18 months of age developmentally. I am very sad about this but so happy that they are going to help him and work with him to get where he has to be.

Now on to his weigh in at the hospital...

He lost weight.

The doctor mentioned to us that we are going to have to throw around the idea of a G-Tube. His head/brain is just not getting enough nutrients which he needs to develop normally. So, it doesn't really have much to do with his does, but they are more worried about his brain development. I am very scared about this. I know this is the best thing for him..I don't want him to grow up without us trying everything we can to give him the best life possible. I don't want him to be so developmentally behind that he cant do anything for himself. I want him to be normal...God...I just want him to be normal. He had lab work done...6 vials of blood...and he didn't even cry! They will be testing and looking for anything and everything from Cystic Fibrosis to allergies. He will be going to his cardiologist appt in a few weeks and then at the end of the month, we will talk about what to do next. It could be that his heart is causing the lack of weight gain, sick all the time...etc. So we will see what the future holds this month.

Kenny graduated from the Help Me Grow program and is now a 3 year old (well, tomorrow)! There are so many people that have come into our lives because of Kenny (and Nick). The women from Hospice, Barb from the Board of Health...his service coordinator, the therapists that worked with his PT/OT here at home, also Anedra from Regional Infant Hearing Program... OMGosh...all these people AND MORE, have helped us go through the first 3 years with Kenny and how to deal with the death of Nick. Simply amazing! So for those that are just new to the journey of either losing a child and/or having a micro preemie...PLEASE use all your resources! There are people out there that will help you get through this new lifestyle that is ahead of you!

I just cant believe that Kenny (and Nick) will be 3 tomorrow!

1 comment:

Anonymous said...

As always Michele, beautifully and clearly written. I don't even know how you can stay awake or alert to write this blog. You are a wonder my dear.
Aunt Judy