Thursday, February 17, 2011

Therapy and More Therapy ...

I think it was last week when we finally had Max's true swallow test. We went to the local children's hospital to have it done by a speech therapist and radiologist. They had me bring a very hungry little Max and some different bottles, cups, liquids, and solids to test his swallowing technique and ability. They sat Max in a chair and had me feed these different items (which had been mixed with barium) to him as this machine shot moving pictures of his airway, etc. Wow! I was so thankful for the procedure being done. It showed us that Max aspirates (chokes as it goes into his airway) on any liquid that is not the thickness of honey. So, now Max is on a "honey thickness" diet for six months and then we will re-do procedure to see if being in his new home, doing new therapies will help his swallow technique develop. If not, it's off to a specialist. I almost wish we could just skip the six month "wait and see" period and skip right to the specialist. My concern is that he will dehydrate from NO liquids. Just praying his ability to swallow improves. Could it be his tongue thrust? Oh, and he is not allowed to use a cup - only bottles with a criss-cross cut in the nipple. When Max uses a cup, he really aspirates.

We also have a wonderful physical therapist who is willing to come to the home for Max and Ivanna. She seems so knowledgeable and kind that I really am excited to see how both children progress with her instruction. She already has given me some wonderful ideas to help Max, who has a stiff sort of walk. Remember me mentioning his hips? Well, she has some great ideas as to how to help him lengthen those ligaments which probably have shortened from improper use. YaY! Once Justus ages out of his program at age three, then she will do all three children with Ds here in the home. A HUGE blessing for sure! Between homeschooling, medical appointments, piano, church, etc. things get busy here. Anything I can do here at home is a great big benefit.

I also have a friend who is a nurse that mentioned to me at church that she thought Ivanna might have thrush. I had suspected something, because Ivanna would wake up every morning with terrible encrusted lips and sort of white spittle at the sides of her mouth. Her tongue looked burnt and her taste buds were raised. I had some medication for that because interestingly enough Justus also had thrush when we returned from overseas with him. Could he have gotten it from the orphanage? Anyhow, I have been treating her and viola! ... no more lip crusties. However, now I see little red spots on her tongue. Maybe it is healing too. Time will tell.

I also ordered glasses for Max and Ivanna and am SUPER excited! I think it will be so cute to have them in glasses. Plus ... they get to SEE! Imagine that! Can't wait to see how this helps them develop better. Ivanna's strabismus seems to be doing ALOT better by patching the one eye. She actually will look at something with both eyes. **We ordered from Specs4Us and let me just say ... THEY ARE AWESOME to work with. Go check it out: here. Glasses specially made for those extra special little ones.

Speaking of Ivanna's eyes, I have noticed that she has a REALLY hard time looking AT someone with straight on eye contact. I know she can do it. I know that she can see. But often times she will turn her head to the side and swat at her subject from the side. I do catch her looking at stuff, but when it comes to people - it's the turn the head routine. Thoughts?

Oh ... and our friend ... H.Pylori ... is a little stinker. Literally. We re-tested and Ivanna is now negative (praise the LORD) but Max is positive. So ... now we have a referral for a GI specialist. By the way ... Gretchen ... if your reading this - I'm interested to know how things went?

So ... that is life lately ... lot's of appointments ... therapists ... speech evaluations .... and hopefully in the end things will settle and we will have more answers.

**hmmmmm ... blogger is acting up .... so no pictures. Will picture overload in next post.


Sherry Noland said...

So look forward to the wonderful updates. Thanks for them.

Leah S. said...

Ok, here is the odd thing about thickeners. The molecules that allow for thickening the liquid do NOT bind the liquid molecule, so he's still getting liquids. Weird, but very true. It's a science thing. LOL

Gretchen Thibault said...

Ricky has done this for 4 years and is as hydrated as he needs to be (my way of saying that he pees plenty!!) :-)

Faith for Hope said...

Been praying about that test since I saw you at piano lessons last week... glad to hear that Ivanna is doing better.I am praying for Max too. Remembering Who The Great Physician is and that He is able to take care of their many needs. Can't wait to see them with their glasses.... and praying they will keep them on! (just remembering when Emilee first got hers ... ugh!) Love ya, Grace

Anonymous said...

There's a powder called Thick-it which you can add to anything Max would ordinarily drink, to make it as thick as necessary for him. It works with water, juices, milk, etc., and should be available in drugstores - if not, they should be able to order if for you. Can Max handle plain Jell-o or puddings? They may be a step up from honey thickness...I can't remember.

Glad you found out about his swallowing issues. You're really staying on top of things with glasses, etc., too. Your little ones are cuties!

Best wishes,
Susan in Ky
Cousin to Two from U.

Just Me @ My Domestic Experiments said...

What is H.Pylori ? Just curious since my boy has a lot of GI problems.


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