Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, July 06, 2009

Still Chugging along

Angela and I are still chugging along with her appointments at Mayo. Today was very long, and very boring! Our morning visits (OT, then video swallow, then OT again) went by quickly, but the second OT visit ended up taking about 5 minutes so we had THREE AND A HALF VERY LONG HOURS to kill before our next appointment with the Ped. GI. UGH!

We killed some time outside at the fountains, and found some awesome live entertainment going on. An a cappella group that was fantastic!

Finally we met with the Ped. GI. That was the visit I'd been waiting for. She's pretty sure that at sometime Angela had a stroke within her brain stem. On the video swallow Angela is able to swallow liquids without any problem, but solids are clearly and issue! She does an amazing job of protecting her airway, but it's tons of work for her, which is why she closes her eyes when she eats! She's concentrating so hard on relaxing so she can swallow!

She needs to have esophageal manometry done, but finding a place that does it on children is difficult. We know that CHOP (Children's Hospital of Philladelphia), Milwaukee and Boston Children's does it, but we still need to find out of the University of MN does or not. We know the Children's Hospitals and Clinics (that's the Minneapolis and St. Paul group) does not. If we can't get it done here, and if I had the choice, I'd go to CHOP because I know people there. LOL

For now there is a major diet change in place for Angela, and I'm still trying to sort out in my head how to explain it to her in a way she will understand. Basically, if it crunches, she can't have it. Anything bulky (hamburgers, chicken nuggets, any type of breads, meat, blah blah blah) are no more. She can have things as thick as mashed potatoes, but that depends upon their consistency. Sticky stuff is no. Hot dogs would be O.K. if chopped up because they're kind of slippery. Canned fruit, particularly peaches, are O.K. provided she chews it well.

Once the manometry is done we'll know what, if anything, we can do next. Those results will tell us if dilating her esophagus, along with botox injections to the area, will be beneficial. If not, she'll have to stay on this diet forever. If it is possible, it should last for a couple of years at a time before having to be redone.

On the 17th we meet with the Neurologist at Mayo who will probably be ordering additional tests.

Tonight she and I will have a talk, and then I need to go grocery shopping for approved foods!

4 comments:

Shelley said...

I can not even begin to imagine how difficult all of this is....nor how you're going to make Angela understand it all.
I'm saying a prayer that you'll have some kind of option for her other than a life full of very little food choices.

Monica said...

Praying here also!! It was great talking to you both today!!! See you at softball!!

Tamara said...

Ugh. Hope your discussion went well. Prayers -

Bethany said...

Yeah, I think smoothies are your answer! You can also put baby spinach leaves in them and hardly taste them.