Summer Changes

I didn't realize it has been 2 weeks since I have updated the blog. We have been busy with summer day camps at Jill's House. They have been wonderful for all of us. The kids love being there. What's not to love - playground, indoor pool, gym, bouncy houses, library, movies, sensory rooms. It is a great way to keep them both active and socialized during summer. And it gives me a chance to do something as well.

This week we are taking the week off from day camp and staying home. It has been nice to stay in pjs all morning while cuddling on the couch watching Disney Junior. The weather has been superb, so Waverly & I spend some time on the front porch or enjoying the backyard.

The kids are both doing well.

Oliver is changing. Forgetting. I forgot how much I hate this stage. He struggles to remember how to climb up onto his bed or step into his chair for meals. Typically when I tell him it is time to go, he will go to the front door. Now he wanders around looking lost. And when we go out to the car, he would simply go to his door and climb in. Now he wanders. Thankfully he isn't getting frustrated with the confusion. But it breaks my heart to see him unable to do the simple tasks that were once routine for him. 

Waverly is doing well. Her crying seems to have subsided thanks to her new pain medication. She is slowing down though. Her walking is becoming a bit more labored than usual. She is beginning to cough/choke on her own saliva. She also has been unusually tired the past few days. On Sunday, she even fell asleep in her stroller while we were at a friends' house. She never does that. The sleepiness scares me. I know from talking with parents who have older children with Sanfilippo that they begin to sleep more as their body slows down. Her simple cat nap on Sunday filled me with fear.


Anonymous said…
Am thinking of you. Am so glad for Jill's House. n
Kamarah said…
Continued prayers for your, friend.
PK said…
Just a note to let you know I'm still reading and grieving the sad things and celebrating the happy times with you.
Kathryn said…
That's good about Waverly..not so good about Oliver. Virtual hearts and hope are sent your way.

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