photos from this evening

Okay, he's only been asleep for about a half an hour, and Lars is already awake having a party in bed... Don't know how long I'll get to write. His nights are like wiggle-wiggle-madnuzzle-squirm...zzz...private party!...zz...wiggle-wiggle-madnuzzle-squirm...

Today was great, excepting the morning pain. Went to the respite center for a while & had a great time there, especially in music. They call him "the music man." He was in a bean bag chair with a bunch of kids watching a movie in the "slumber party room" when I came to get him, wiggling around & grinning ear to ear.

Napped after respite, but was nudged awake for dinner. Our friend Ginger from church came to help out & fed Lars a great dinner, then got him to sit on the floor & do some playing. He hasn't been willing to sit and play for many weeks, and it was so encouraging to see some of the play skills that have disappeared lately (like touching toys, or banging, which was just emerging when the pain started) beginning to come back.

We had a yummy quiche (thanks, Sue) and cookies (thanks, Sandra) for dinner, and then while Ginger had Joa, we scooted around and got the dishes done, kitchen cleaned, groceries from days ago put away, floor swept, part of the basement overflow food shelves organized...

Joa spent the evening with Hanna & Danny, and had a wonderful time. He got to rent a movie, eat pizza, laugh, and have a great time with two of the finest people you'll ever meet. He was a total sweetheart when he returned, wanting to snuggle his little brother. Although tired, he even managed not to melt down about the fact that he forgot his phone & ds lite at their house.

I've been harassing Andey to do some writing about the appointments she's taken Lars to this week (Epilepsy Dr. Betterthantheguybeforehim and CCS Dr. FreshFace). Silly woman thinks sleep & other such nonsense are more important than blogging. Hrumph. She did start & this is what she got:

"So Tuesday we went to see his new doc from the CCS. which is short for "complex care service". This doctor [heretofore known as Dr. FreshFace -LK] had spent two hours the day before reading Lars' whole medical record. He was empathic, a good listener, made me feel heard and respected which is relatively unusual in this whole mess. He also had a few new ideas, the best one of which was that Lars might have a fracture or other bone problem in his hips or legs or feet - kids with disorders of muscle tone often have trouble with bone development and can get fractures pretty easily. Other ideas were about optic neuritis - the epileptologist the next day thought Lars didn't really fit that picture - and also that it might be worth doing a scan of his brain to see if there are any changes."

Turns out they found he has something called a "coxa valga" structure in his hips, but it wouldn't necessarily cause pain like this. It means we need to keep an eye on his hips, as they could dislocated when he's older.

His endoscopy biopsies came back with a diagnosis of "mild chronic gastritis" of the stomach antrum. We don't know if it could theoretically cause this much pain, but are trying to find out.