Day Two

Oliver surprised us all this morning. I expected a temper tantrum when he saw his backpack or arrived at school. Instead he walked right into the school, down the hall and into his classroom. His backpack slid off and he went over to the sand table. He was thrilled to have a bucket and shovel. I said my goodbyes and then came the tears. But his teacher said the crying stopped soon enough and he had a much better day. He was interested in circle time and music, although he wouldn't sit with everyone. He kind of wanders around and comes over when his interest is peaked. Nancy (Oliver's teacher) said he is doing beautifully. She picks her battles and pushes him to do certain tasks, while allowing him to participate when he is ready in others. I was so proud of him! When I came to pick him up, he started crying and ran over to me. One big hug later, he was feeling much better. The highlight of my day was hearing 2 of his classmates say "Oliver" and call him over to play. I started to tear up, right there in the midst of sand boxes and easels. He is (very slowly) beginning to make little friends. It is incredible.

Waverly had another great day. I got there a bit early and went in to speak with her teacher. I wanted to make sure she understood Waverly and how much to manage her within the classroom. She said that Waverly was doing beautifully, very exuberant. She is simply the happiest little girl on the planet. She also rode the bus home today, since they finally had the safety vest she requires. I am sure she was thrilled to be back on the school bus again.

Wavey is continuing to change before our eyes. We tend to plateau and then all of a sudden a big dip. We have hit another bump in the road. She is really having trouble eating. She is completely unable to concentrate on her food and her arm spasms just don't allow her to hold her food on her own. We have started having to feed her individual pieces of food and give her a lot more assistance at the table. We went to Chipotle last night for dinner and we realized that eating out is going to be much more of a challenge. She did say "mommy" today while we were waiting to go into school. I thought that I would never hear her say that word again....it was the most wonderful surprise to see her lock eyes with mine and say my name. Pure joy.

Comments

Unknown said…
I got tears when I read she said Mommy, I miss those days. About her arm spasms, have you talked to her doctor about starting her on Baclofen? Ciara had spasms so bad that the constant movement wore the skin off her feet and legs and it was horrible. Since the baclofen she doesn't spasm or twitch at all, it has worked wonders for her and a lot of other sanfilippo kids.
Rochelle said…
I'm so glad she said Mommy. What a wonderful gift for you.
I've been following your story for a month or so. It's broken my heart over and over. I first heard about your story from the Safe Haven web site. I pray for you and your family a lot. My sister-in-law's nephew has MPS VI so I know a little bit about it...of course I had to read up on the type 3.
Know that many are praying. Thanks for sharing your story.

Rochelle Sanderson
Topeka, KS
Anonymous said…
Good job Ollie! School is one of the best ways to make new friends.

I'm glad you had that special moment, Mommy.
Joanne said…
Hi Shannon,

I felt so emotional reading this update, both joy and sadness. I am so glad that Oliver is adjusting so well to school and that Waverly said Mommy again out of the blue. I had a big smile when I read that! And I can so realate to the other points, the pangs of joy mixed with sadness of watching Oliver make new friends and also when a new point of regression appears, as you mentioned with Waerly's eating. I just wanted to let you know I'm thinking of you lots! Joanne
Misty said…
It sounds like things are going so well. Congratulations on the Mommy, Misty www.miracle4will.com
Laura said…
I'm reading even if not commenting, but I wanted to tell you how happy I am to hear about Oliver's school successes, and Wavey's thrilling bus rides! As for those dips, sigh, we pray for rainstorms of grace all around you.

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