Thursday, February 21, 2013

Affiliates in Action Conference & Adam Update

I am at the Down Syndrome Affiliates in Action national conference in Cincinnati. Affiliates in Action is an organization that connects and supports Down syndrome associations. I am heading up this year's Buddy Walk for our local Down syndrome association and have signed up for some sessions that I am really excited about.
This little guy came along for the ride. He was pretty popular at the opening reception tonight. I have someone helping me out with his care so I can actually pay attention to the speakers, but I am glad to have him close by.

Adam is spending some time with his favorite aunt.
His tics have returned, and we are trying a new antibiotic. I am frustrated, heartbroken, and confused. Our pediatrician is great to work with and is eager to learn along with us as we take this one day at a time. I am researching and sharing with her because the neurologist (who was great) does not believe antibiotics are helpful. He is good to respond to emails but does not need to see Adam and considers this a bend in the winding road to recovery.

We saw a tremendous difference once Adam started antibiotics and the PANDAS Network Website has a lot of information on the crucial role of antibiotics. I have been back in touch with a parent who's daughter was diagnosed & they also had to use different antibiotics because the immune system would get used to them quickly, and the tics would return.

The tics started up again two weeks ago and got a little worse each day until this week he was back to opening and closing his hands, tapping his shoulders, etc. It has not affected his thinking or communication yet, which I am so grateful for, but he is definitely not himself. It makes my heart ache.

Please say a prayer for this sweet big brother. Pray that we make the right decisions for him and that he will recover quickly and completely.

Tuesday, February 12, 2013

One for the Record Books

My day:
  • First up: Levi's physical therapy appointment
  • Arrive home to find occupational therapist in the driveway ready for another therapy session
  • Lay boys down for naps and someone comes to the house to replace passenger side window on vehicle (that's another story for another time)
  • Another repairman comes to work on water softener & filtration system in garage
  • While repairs are being done, I contact the doctor about some of Adam's tics returning. She wants to see him & test him for strep ASAP.
  • Get kids in vehicle for doctor's appointment- vehicle won't start
  • I make phone calls and discover that the car door was open so long during the window repair, the battery was drained.
  • Thankfully our auto repair shop makes house calls. We quickly get a jump start & leave just in time for the doctor's appointment.
  • Adam is given some Valentine's candy during his office visit & gets one that is too hot.
  • Doctor kindly gets him a glass of water
  • Next he starts thrashing around & screaming while she checks his ears, knowing a painful throat swab is next... 
  • Meanwhile, Levi tries to grab the cup of water, dumps it on his own head and all over his shirt. Then slips on the floor into the puddle of water and starts screaming and crying.
  • While both boys are crying, the doctor and I burst into laughter. She says, "This is one for the record books!" Adam sadly crosses his arms and tells us, "This is not funny."
  • Get home, water filter still on same cycle it was on when we left the house (not good since we have a septic tank)
  • I start to back the other vehicle out of the garage to gain access to the water filter system
And do this...

I laughed about everything until this. Thankfully, Wes is laughing now. Having someone like him to come home to makes days like this easier to bear. I suppose tomorrow will be better. Except that I won't be able to get the car out of the garage!

Monday, February 11, 2013

Just a Quick Hello and Video for You

Levi has been pretty congested the last two weeks, & now it has gone to one of his ears. He started some antibiotic today which should clear him up soon. Adam has had some tics return since Wednesday. Nothing that most people would notice, but it is a little discouraging.

Today we went to be a part of a class for college students studying speech pathology. They observed Levi while he ate and gave a lot of positive feedback. The professor was very happy with his mouth closure and tongue positioning. She suggested allowing him to drink from an open cup each day to help him with verbalizing. I love opportunities like this to help others and to learn more. It was a good experience for Adam, too. He taught one of the children there how to throw a paper airplane and was very encouraging and kind.

Levi was so hungry, he didn't seem to mind everyone watching and taking notes.

Here is a video I took one night last week. Hope it makes you smile. Valentine's photos coming soon!

Monday, February 4, 2013

Way to Go, Levi!

Crackers, pretzels, waffles, garlic cheese bread, grilled cheese, oatmeal, repeat. That has been Levi's food intake for a long time. I haven't wanted to make meal time a battle, and I have tried to be patient about his eating habits, knowing that he may move slowly towards eating a variety of foods. I keep offering new things, but he usually shows no interest.

But tonight? Tonight he went for it! Mashed potatoes, barbequed turkey breast, and shredded cheese. He has never eaten ANY of those foods before! Way to go, buddy!

And of course he has to do his cheesy camera face even during his feast!
Keep up the good work, Levi!