Some news

Hi all

Sorry I haven't blogged in awhile we have been really busy and going through a lot of changes in our household, I am hoping things will slow down for a couple of weeks. So since last time that I blogged we have had two AFP results back one was 16, and then last thursday's was 9 finally. 9 is the magic number we have been waiting for, A is now normal, but his oncologist wants to make sure so we have no plans to remove his IVAD yet. He wants A to have another AFP drawn, next Thursday, and then we'll see.

For me I really want A's IVAD out. It bothers me and I know it bothers him because he knows it's there. He has not been sleeping well at all, and every time he gets upset, scared, or meets someone new I see him touch his IVAD so I know it bothers him. He is having night terrors every night and ends up sleeping with his mom. I am going to be trying some new things with him in the hope this ends soon, but nothing I have tried so far has worked. Last night Clint tried to take him and calm him down and it took over an hour before he had to give him to me to try. Finally we got him calmed down and asleep. This of course is very trying and wearing on both me and Clint so hopefully we can find some answers. I do think that once his IVAD is out he will sleep better.

When A had his 18 month immunizations they refered us to a speech therapist and early intervention program for him. He has said his first word and of course it wasn't mama or papa, as we were going down the toy aisle in superstore he pointed and said "car". He loves his monster trucks, and his hotwheels. When we were in the Stollery they refered us to a program called FSCD we never heard from them till a couple of weeks ago, and then the lady had to go out of town but we are hoping one day to meet with her, and hopefully the program will offer some help with some of the costs of A's life. We have had to admit A needs special needs as nothing fits him properly and everything you buy him has to have special considerations. He is now 43.5 lbs and 3 ft.

An a lighter note, A can still light up a room with his smile. He is a going concern, running, climbing and figuring out things. He got to go mud boggin with his daddy this weekend and loved it. He loves to play in the dirt and watch the trucks.


Thanks again for all the care and support

Carrieann and Clint

Correction

Sorry I just realized I said 6 weeks from now would be mid august what I meant was mid july. So by the beginning of August I hope all to be back to normal. I was really tired today A was awake most of the night and then he was really trying his boundaries. He has found out he can climb. Well off to bed now to get some rest for tomorrow's adventures.

Carrieann

Progressing along

Well today was another good phone call from the Stollery, A's AFP was 24 last week, this is phenomenal it has never been this low before. Of course through their calculations that means this week it should be 12 and next week around 6. They are looking for 9 so predicting it keeps falling in 2 weeks we should be ready to start planning surgery to take out his IVAD. Which is about mid August. So by end of summer we should have our baby all back to whole.

A walked two weeks ago and he is doing quite well now. He's starting to vary his diet, and feed himself. He is not speaking yet and in two weeks we have immunizations so I am sure the nurse there will suggest speach therapy, and a nutritionist again. I guess I better let her make the referral as it seems his pediatrician is not going to. I don't know if she'll make any difference but I would hate to not have him go when it could help him. It is always another adventure with A.

Right now I am on the hunt to find him a wood potty chair for when he is ready to go. I think I'll be able to find one that will be sturdy enough for him.

He has a new babysitter he just loves. She came in yesterday and he got off the couch and walked over to her and gave her a big hug. This is such a blessing. I was pretty scared to leave him with anyone but she is really wonderful.

Well I'll be doing another blog in two weeks hopefully getting ready to start our journey to get his IVAD out.

Carrieann