Wednesday, June 11, 2008

I love you through "Thick or Thin"

We had Max's Upper GI swallow test yesterday. He was not thrilled drinking barium but he drank enough to get results (and to poop white!) Basically, he aspirates anything thinner than pudding consistency! Not great news, but... the great news is that it is NOT structural. Meaning, it is just because of his lack oral motor control. So, the therapist recommended 2-3 months of feeding therapy and then come back to check it again. I was relieved to hear that! We are not supposed to give him any liquids. I don't know how that is possible. I meet with the pediatrician tomorrow to figure it all out. We are also upping his Prevacid for reflux.

Oh, I talked to an elderly lady while waiting in the hospital for the test. She asked me what Max's "condition" was called. I told her Down syndrome. She said, "Some of the people with Down syndrome are really pretty advanced." I agreed, of course. She told me she had seen "So You Think You Can Dance" when the young man with DS was on there. She said, "He was a bright boy. He spoke well and seemed to have a good life." I was SO thrilled that the boy on that show had been given air time. He truly did what he set out to do...change people's opinions. Way to go!!

7 comments:

Leah said...

This is where Angela was..not being able to swallow liquids thinner than pudding. We messed around with thickeners for awhile (these are an interesting product that thicken liquids all the way to "almost solid" without actually changing the liquid molecule.) The only problem with thickeners is they usually add a lot of calories! This is great if you have a child who's having trouble gaining weight. Not so great if you have a child who is already on the heavier side. Even at pudding consistancy and thickening stuff we weren't able to keep Angela healthy (lots of aspiration pneumonia) so we had to go back to gtube until she could relearn how to drink. When she started preschool shortly after her 3rd birthday she was off the tube and drinking like the problem had never existed! I'll say a prayer for you that you can keep Max healthy without having to go the gtube route. While for me it wasn't any big deal, as I'd spent most of my adult life dealing with gtubes, I know that most people don't want to go there! And you've done them before, right? So you know what it's all about.

Michelle said...

Well - other than not giving him any liquidds right now - that's really good news!
And Wow! That's awesome that she saw the show and him on it! He was great on there...

Christina said...

My friend Renee, of My Special K's, had to thicken Kennedy's liquids because of this very thing. Praying the feeding therapy works and I agree its awesome that boy got some air time to give positive light to DS!

Shannon said...

Shawnie--

I have a question for your regarding donating to the orphanage in Serbia from which you adopted Max. Can you send me your email address? For some reason I don't have it.

Thanks,
Shannon Nisse
sewingmom_830@hotmail.com

Dolores said...

I'm pleased to hear how well things are progressing for Max!
It's very cool that the young man that danced helped to improve public awareness for Down syndrome. I saw that video and was also very impressed!
Dolores

Joyana said...

Hey girl - brooke had the same thing but we had to add a honey texture mix that the PCH specialists did for us. Call me if you have ?'s love ya -

Trisha, Duane, and Family said...

Hi Shawnie....So happy to hear that Max does not have a structural difficulty. I know my little John-John is very developmentally delayed and especially in regard to his eating abilities. I have really worked hard to get him to start chewing. I'll write to you more later. Many blessings!!! Trish