Sunday, July 5, 2009

The forever struggle

Yes...It's eating.
Nathan can't eat and has to be tube fed. It seems like a life curse. I keep trying and all I hear from everyone is that these things take time. It takes time to learn how to eat. It will be a long process... blah blah.. tell me the reality already. Am I just living in some dream world because it kind of feels like it? Will my son ever eat by mouth? 3 years and no real progress.
Nathan has a huge aversion to food and it's pretty hard to push him ( but I do or at least I try) to taste or get anything in his mouth. Other than Nathan touching food and occasionally or should I say accidentally putting something to his lips, I have seen nothing else. He shows no interest in food and I also believe that he doesn't know what it is.
These pictures are from this morning, while once again trying to get him to eat.

Yes... he touches food, and this is good
If there's a bowl he'll put anything in it because it's his favorite thing to do

then he discovers the texture isn't so great and he'll

make a face
but he'll continue to play with the bowl
because spinning bowls is an obsession for him


Our little grabber doesn't grab everything... it's like he knows. Look at that face! I love that Face but I'm tired and frustrated, truthfully I'm sick of everything.
When Alyssa was a baby I didn't analyze every little thing so why do we do it with our special needs kids? Some very good friends of mine deamed RTS to be REALLY TOUGH SHIT. Today I couldn't agree more. I am frustrated beyond belief.

Last week we met with our social worker because I had questions about Nathan and school, he will have an aid but a reccomendation to which school can not be made because they are not allowed to make recommendations. GRRRREAT! So the therapist and Dr's are the experts but I can't get a reccomendation for which school would be the best for my son. That's just perfect- That's like going to a Dr. (an expert in their field) and the Dr' saying that they can diagnose the condition but can't recommend treatment! It's ridiculous!
AT the end of August we are meeting with all of Nathan's therapist and were going to put together another action plan. I know this will be good but I kinda feel like just shrugging my shoulders and saying "whatever"

I needed to vent and this is where I can do it. My blog keeps me sane and keeps me from having huge therapy bills...
I will add for those of you that have been asking me about Nathan height and weight that he weighs 27.4 lbs and is 3ft tall. His head circumference is 17 1/4 inches.
I had a quick look at the RTS growth chart for boys and if I read it correctly, this means that he's at about the 50% percentile for both height and weight. I'll have that confirmed when I get a new pediatrician.







Friday, July 3, 2009

Douglas Richard Ashbee

Here is the slideshow that I played at my father's memorial service. There are some great pictures of my dad as a child. Sorry it took a while to get it online.

Bookmark this page if you want to check back to find out how our family is doing. Although Nathan is the focus of the blog Christine includes other family happenings as well.


Sean

Thursday, July 2, 2009

Remembering you on your Birthday


 Alyssa put a special birthday cake sticker on the calendar so that we would remember to call you and wish you a Happy Birthday. She doesn't really understand that you have left us. She seemed puzzled today when I said that we couldn't call you. She was excited about your birthday because birthdays mean presents and cake. Who doesn't love birthdays right? 
You have been in our thoughts today. I certainly hope that friends and family that have past on have at least thrown you some kind of party on the other side. I can almost hear you laugh...
Happy Birthday Grandpa, we miss you. You would have been 62 today.