It's obviously been a long time since my last post so I have lots to report - and pictures to share!!
Raquel continued to have "home hospital" for the remaining part of the school year. She has made great progress working one-on-one with Miss Crystal, her kindergarten teacher. She is getting stronger - using her legs more and developing some upper body strength. Her big sister Gabby continues to be a huge support - and often doesn't even give her a break from working. Here they are at the table, in their pajamas, picking items to work with. Gabby didn't give Raquel a chance to eat or drink anything before setting the table up this day. Raquel literally woke up, started to come out of her bedroom, and Gabby redirected her right back in to "start the day out right". Raquel loves having quality time with her sister and didn't put up a fuss. This day, that is...
Crystal has been such a wonderful addition to our family. She has not only helped and encouraged us all, she has also introduced me to a mother that uses the iPad program with her son. We now are playing around with a few of these applications. On one of them, Gabby has taken pictures of Raquel's favorite items, then records sentences in her voice so when Raquel pushes the button, it will say, for instance, "I want some juice" or "I want to play with my sister." We will have fun with this over the summer months. This program is just another way to incorporate PECS, but with the touch screen, the response is immediate. And I really love that Raquel gets to hear her sister's voice saying what she wishes she could say.
Now that summer is upon us and school is out, we did experience one big milestone: kindergarten graduation. I am so happy we were not only invited to the ceremony but also that we were able to attend. Graduation was a little bittersweet. I was so proud of Raquel and the accomplishments she's made and how far she's come. But at the same time, I really wish she was up on that stage able to sing and dance with the others (the special needs classes were to the side). But the school made graduation really special, and I never felt like Raquel was isolated, just kind of there watching the others have fun.
Here is my graduate, in her cap and gown.
Here she is with Miss Crystal. We are hoping she can continue in-home academics over the summer if the district allows it. I should know about that this week. If not, Crystal also teaches swim lessons, which is something I would really like Raquel to take, especially considering how much she loves water.
Another special event was running into our beloved Miss Sara, Raquel's preschool teacher, while shopping at the mall. I've stayed in touch with her, but it was sure nice to see her in person. I look forward to spending time at the beach with her and her beautiful family this summer. She has a daughter Gabby's age, so they always have a lot of fun when we get together.
As far as the Keto Diet goes, well, that's still a work in progress. I pretty much consider her on a Modified Adkins Diet at this point since her nutritionist continues to be missing in action. In all honesty, the adjustments I've made to Raquel's diet - some were quite drastic - I feel are really working on the seizure front. I've definitely noticed a decrease in them since we started this, and am feeling pretty optimistic. Hopefully come June 27th, Dr. Mower will start a reduction to some degree in the meds so we can see how much of a role that is playing. Often, Raquel appears to be so overly medicated it breaks my heart. But at this point, I think I would prefer this to her having daily seizures where she can end up in ER again.
Here's me and my girl. I love her so much. I would have to say that 90% of her abusive behaviors towards me (the biting, head butting, scratching, hair pulling, etc.) are gone. I am able to tell when she's getting aggitated and needs some quiet time, and I think that she is just maturing and outgrowing a lot of these behaviors.
Today we went to Children's for her physical therapy evaluation. We were supposed to have this a couple months ago but it was rescheduled to today. I absolutely love "The Castle", their new facility up in North County. It's a pretty happy place. As with anything I've experienced with Rady Children's Hospital, everyone was awesome, from the staff greeting you at the front door, to the specialists evaluating you, to the actual facility itself. I was ready to jump into the ball pit!
Miss Lucy did our initial evaluation and could possibly be Raquel's therapist. I requested weekly sessions and looks like she will be getting that. Now it's just a matter of them writing up her PT goals and fitting her into the schedule. One of the main goals is increasing her walking so I don't have to carry/lift her as much as I do now. Lucy said this was a huge red flag because she will continue to grow and get heavier, and I will ultimately get hurt trying to do what I've been doing. Obviously the low-tone has to be addressed because Raquel just can't do all the physical things that people take for granted but Lucy plans on implementing a few things to help get this going. The day Raquel can climb into the bath unassisted will be a wonderful day!
Here is Lucy explaining to Raquel what they were about to do...
And Raquel standing on top waiting to jump into the ball pit.
Crawling to Lucy.
Then taking a bit of a break. I thought she might fall asleep at this point, actually. Her medication was starting to kick in about then.
I was very proud of my Rock Star today. She worked hard, but remained calm and happy. I am really looking forward to getting the PT going and building more of her strength and endurance.
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