Saturday, January 23, 2010

a quick recap

Mighty Max and I have sure been busy this past week keeping up with his appointments and getting ready for Tuesday's surgery.

1) Had our annual two-hour review with his DD caseworker regarding his medical coupon, health status and any developmental progress. We did a similar meeting a few months ago with the state nurse. Fortunately we have an amazing caseworker (seriously, we are incredibly blessed), but it still isn't easy (for a Momma's heart) to have to label all of of your son's challenges. Two hours of categorizing his needs...oh good times.

2) Another day...another ear infection...another dose of antibiotics. Boy am I glad he is getting tubes next week. He missed school most of this week, but *hopefully* he is feeling well enough for surgery. C'mon Max, this took a lot of planning!

3) For the past two weeks, I have been going back and forth with a few clinics at Children's to ensure his bloodwork results were acceptable to move forward with surgery. (There had been a few areas of concern that would have hindered his anesthesia success.) For whatever reason, there was mass confusion about who had what, etc. Fortunately, all is well...

4) Except...for his growth hormones. They are officially "abnormal" and have actually worsened since the last test. Darn. So the next step is a five-hour stimulation test to determine the next step. Most likely, he will start needing the hormones which will be administered via a daily shot...by me.

5) Last but definitely not least, we have run into some stumbling blocks with Maxwell's communication and that has been weighing heavily upon me. He has regressed considerably with his signing and speech.

I know that children (especially those with special needs) will go forward and backward with their development, but this latest setback really takes us back quite a bit. For example, I was watching videos from a year ago and he was doing MUCH better with his expressive communication than now. This "regression" has latest for several months now.

I know, I know, I know that I should be pleased with all that he has accomplished...and boy am I! It just can be very frustrating...especially with the all-important communication...to not understand what has happened.

His hearing has declined (but hopefully we will see a difference post-tubes) but not significantly enough to change speech or signing. It's like he isn't even trying right now...in that department. He definitely is trying and accomplishing many other tasks, but he just isn't into expressive language.

*Actually my favorite thing right now is that he WILL communicate quite easily when it comes to Blue Dog, Monkey, Santa, Cow...or his colored bins. He signs their names perfectly and quickly. Perhaps he simply isn't interested in communicating about anything else right now! :)

13 comments:

Crystal M. said...

I know what you mean, Eva seems to be doing great and then it seems like she lost something. People always tell me, be happy she is here, be happy she is healthy. God knows I am but sometimes its hard when we can not always communicate with them or know they can do something and then it just stops, like Eva with her walking I am so happy she is doing it again and doing VERY well.
I hope surgery and everything goes well.
Hugs,
Crystal and Eva

Meril said...

Hey Friend,
I have years and years of ear tubes and growth hormone injections under my belt. Let me know if there's anything I can do to help. I'm just down the hill.......

Tommy's mommy said...

I have been thinking so much about Max's surgery. Wondering how he will mend and thinking alot about your concern over this one in particular. Knowing Tuesday is the day, I'll be thinking about both of you. Absolutely let me know if you need a coffe or a hug or anything at all while he mends. I'll be at work all next week and can easily stop by.

Max will be able to stay healthier after the T&A, and so will my Tommy. This will be a different surgery than the others, but hopefully one that will keep our sons healthier.

The Claytons said...

I hope the surgery for Max's tubes go well and you may be exactly right... he may just not be interested in communicating anything besides the the things that are very interesting to him right now! I feel the frustration though and hopefully the tubes will help him feel better and want to start all the communication up again!

Jen said...

wewill be thinking of Max on Tuesday!

Carolyn said...

Sending thoughts and prayers for Max (and you) on Tuesday. Thanks for the recap and I'm sure he will be his owen self in no time. It's on his schedule of thing to get done.
Love you both,
Carolyn in WV

hannah m said...

All our loving thoughts and prayers headed your way...on all fronts!

littlekanawha said...

Is it possible that he's going through a stage of being more interested in physical accomplishments than in verbal/communication accomplishments? From the recent posts in your blog, it sounds like there is progress in several physical efforts. He IS a GUY, even though he's a little one with significant challenges. Sometimes hormones win out over everything else!

Kurby Family said...

It is early on Tuesday and already thinking of you guys. Hope all goes well today, you're in our thoughts and prayers. I'm sure setbacks are frustrating, but you are an awesome mommy doing EVERYTHING Max needs and then some. You are the reason he is making huge strides all the time. Hope you are in good spirits today and all goes well.

Kristi said...

Oh, Amy... thinking of you, friend, as you and Max prepare for his surgery tomorrow.

I just caught up a bit... have some thoughts swirling around in my head about transition, regression, your mamaheart. But, for now, I will just focus on the issue at hand... tomorrow's surgery.
Holding you both so very close, friend.
Kristi (and the Flock)

Leslie, Arlin and Katie Kauffman said...

Katie has a really hard time with expressive language too. She has to be totally motivated in order for her to spontaneously sign something. And honestly, there just aren't a lot of things that she finds THAT highly motivating! She's honestly pretty content just living in her own little world and having someone wait on her hand and foot without her requesting anything! :-)

It's something we've been working on for a long time, and something they've really been focusing on at school with her this year. It's definitely improved with the more intense focus, but we still have a long way to go. I definitely understand your concerns.

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