Wednesday, November 11, 2009

The Josh Roller Coaster

Isn't this picture so sweet? I think so! What a miracle he is.

I have decided to call part of my life the "Josh Roller Coaster". It seems like there is never anything smooth sailing with him, it's all up and down.... and then sometimes even upside down.

The last couple days have been very emotionally draining for me. Monday was a chaotic day in which I did not do well at planning out my day. Josh had both his Speech Therapist (Jill) and his Occupational Therapist (Lynda) come. He had a very off day. He has those once in a while, but this was a particularly bad one. Because of that, it instigated a couple deep conversations about Josh and where we are currently.

His Speech Therapist, Jill, is starting to think that Josh's auditory processing is very far behind. We already know that he has a Sensory Processing Disorder, but his auditory is farther behind than the rest. It really explains why he is not really even babbling, let alone talking. He is scared of every noise he hears too. This also explains why when we verbally say something to him without signing, he doesn't 'get' it. This doesn't change anything as far as therapy is concerned, but Jill is going to do some basic hearing tests on him to make sure there isn't fluid in his ears again.

His OT, Lynda, was able to witness something that nobody else besides Scott and I have seen. Josh has these bad shaking/twitching spells going on. They started last december, so it's almost a year later. He is very inconsistent with them so we have not been able to have his neurologist see them, or anyone else. She was concerned and told me she wishes she could figure it out. She also thinks we need to address it again since it has been almost a year and no change. As far as therapy is concerned Josh is doing good with feeding. He is starting to chew more and we are so happy. It still does not address most of his problems, but any progress is good.

Then, I finally had a good talk with his GI doctor about his reflux mostly, and feeding/nutrition concerns. She expressed to me that with Josh's track record of problems she is a little worried about doing the Nissan Procedure (that is where they take the top part of the stomach, wrap it around the esophagus to prevent anything from coming up) since his stomach position is high and he over-reacts and takes much longer than usual to recuperate. So we are going to be as aggressive as possible first with treating the reflux before we go forth with the Nissan. I trust her judgement and know that she is truly thinking of Josh personally, and not just another medical case. So we are going to change one med, add two more and put Josh on continuous feeds. Right now he is on continuous feeds at night, but not during the day. We are going to put him on 24hr feeds for a while and see if his body can tolerate it better and he can gain his weight back he lost and keep gaining to the ideal weight. I have been opposed to the 24hr feeds at first, but after talking to her I can see the benefit with it and I am willing to try it.

Now tonight is Josh's sleep study/EEG down at Primary Children's. I hope that we might find something there that can explain some of his complex issues, but we may not. I just hope we can get to the bottom of everything soon. I'll post more tomorrow when I have more information.


Chantel and Brian said...

That's a lot to take in. I hope the continuous feeds go well and that everything goes well with the sleep clinic tonight. I'm glad that they have therapy you can do for kids so young to help them out and help you figure out things that are wrong. Can you imagine if you had him 100 yrs ago?

Tanya said...

Yes he is an absolute doll.
The idea just struck me that you were a cheerleader so you could be an awesome mom and very literally cheer your kids on. :) Now you know.
I'm so glad he has experts on his side who aer genuinely concerned for him. Good luck tonight. We are thinking of you!!!

Deb and Spence said...

You amaze me! You deal with so much every day. I'll be praying for you. Hope everything goes well tonight!

Amy said...

I sure love that little guy! I hope the sleep study went well last night. Let me know. I hope that the feeding keeps getting better and better. I agree with Chan, what would we do without technology?

Scilley Family said...

WOW, he is such a cute kid and you are such a GREAT Mom to keep up taking care of him. I know that the Lord gives kids like Josh to people like you because you are the strong ones that can take care of him and give him the continued love and care that he needs.