Wednesday, September 19, 2007

Middle of Week Three - ACTH

WOW Long time coming.....things have been way hectic and finding time when I can stay awake and Daniel is sleeping is getting to be harder and harder!

Well, I thought it was a bit nasty being on the ACTH the first two weeks, but that did not prepare us for the first "wean". Monday was fine, we don't start the different dosage until Tuesday. This will be what we do every Tuesday for the next 4 weeks, we will lower Daniel's amount of ACTH (steroids) that he is getting. Right now we did the wean from .75ml to .50 ml per day. WOW and did the crankiness set in. It seems that nothing now a days is keeping him happy. Well with the exception of going for a walk in the stroller or sitting on my hip. Now neither of these things do I mind, except if its at 3 a.m. Lonnie doesn't take to well to us being out in the middle of the night for a walk! But today is slightly better so I am hoping that it will only be nasty on Tuesday and Wednesday of each week.

On a good note: Daniel started his new speech therapy. He is working on augmentative devices. He absolutely LOVES it so far, of course who wouldn't. His new therapist is excellent, there is a constant flow of activity and once she sees that he is not interested in something she makes him choose with pictures of "all done" or "more" then she will ask him if he'd like to play with .... and gives him choices with more pictures or switch buttons. But she always makes him pick the "yes" or "no" card. They sing songs, play on the computer, and use a lot of mack buttons with voice. Even if he just grunts, she always tells him I like your voice, or I heard that, thank you for using your big voice. The interaction is just great. So two days a week we do our Augmentative Therapy

All his therapies seem to be doing really well (thank you Ms. Anna). He is eating very good, still not up to the standard two year old eatings, but much better than before. There is a lot of tongue movement which is a must for speech and eating. So for now we are continuing to do that two days a week we are doing the Feeding Therapy. (if you check out the picture closely of Daniel in his creepster crawler, you'll see that even though he doesn't speak he is telling me what he thinks about being in there. Check out his hand!)

Now for the Physical Therapy, we are very fortunate to get 3 days of therapy a week and he is absolutely in LOVE with Ms. Carol. She always sings to him and gives him hugs and kisses, but keeps him very motivated. She is ALWAYS coming up with new things to try. Never a bore with her. But we hope she gets well soon, she hurt her vocal cords and can't talk for two therapy sessions are a little quite right now with a lot of writing notes.

Occupational Therapy we get two days a week, Ms. Linda is awesome too. We re very blessed to have such good therapist that like Daniel and work well with him. For the last few weeks we've also had a student OT working with Daniel and Ms. Linda. Her name is Ms. KC. She is going to make a very good therapist one day. Daniel took a liking to her too. Seems Daniel takes a liking to all females!

He doesn't care much for the male Visiting Nurse that comes to our house once a week for the duration of ACTH. The man has never done anything, just Daniel didn't take a liking to him. LOL

His blood work, weight, blood pressure and temp. are still on the good side. Thank you God!
So we're doing ok. Here is a picture of Daniel this week. I think he looks the same but occasionally the cheeks look a little chubbier. And I know he feels like he weighs two tons!

No this picture aren't his real teeth, not a side effect of ACTH, just us playing and Daniel using his lips more. Its very therapeutic don't ya know! ;-)

Daniel needs a haircut! HINT HINT HINT to Aunt Aimee! by the way so does Daddy.


Anonymous said...

He looks like such a big boy in his photos, the teeth are very funny! Hang in there! You guys are doing great.

Jacolyn said...

It is wonderful that Daniel has so many great people to work with him. I know it's been hard but gosh he is so precious. You are a great mom!