These past couple years of dealing with Raquel's disorder have been beyond challenging. There have been countless tears and an equal number of sleepless nights. When I look back sometimes, I often wonder how I managed to deal with it while keeping a little bit of my sanity. And to this day, when things are tough, I still reflect on why I've been put into this situation in the first place and try to figure out what I'm supposed to be getting out of it - besides a healthy daughter, of course.
These past few weeks have illustrated how much we have accomplished during this time. First, Raquel had a great school district assessment before Christmas. That led to really great IEP meeting in January - the first one ever. When I typically hear the word "IEP," it felt like a kick in the stomach because I knew the process. Fortunately, I now have a different reaction. It may have taken me two years, but I really feel the district is getting the fact that I know my child best, and for that I am truly grateful.
A week after the IEP, we had our annual IPP with the Regional Center. That's the meeting where I meet with our case worker, review Raquel's previous goals and establish new ones. It was at this meeting that I realized how far we have come. So many of the behavioral goals we had in place were no longer even necessary. And it was a wonderful feeling watching Heather scratch things off her list, obviously very pleased with Raquel's progress.
Yesterday, we had Raquel's neurological follow-up. We haven't seen Dr. Mower since her 24-hour inpatient video EEG monitoring last August. Again, more good news. Dr. Mower was SO excited about how she's doing! He said that she is a completely different child. She is so calm now, so focused, so attentive. He was comparing notes from the last visit to yesterday and was literally in awe. Raquel now consistently - and appropriately - says, "What you doing?", "Me do it!", "Put it away!" Another favorite word is "Mine!" Not one of my favorites, but I love to hear her say it. And she is just babbling away. Dr. Mower put in an order for another 24-hour VEM thing (sigh) for March, and then, depending on test results, plans to start weaning her off the Prednisone. YAY!!! She has gained 5 pounds since being on the steroid, but he said that was completely normal and that she is still well with in her weight percentile for her age. He also ordered more blood work (sigh - again), so I have to get that done within the next couple weeks. And I know I'll wait until the very last day because I hate taking her to the lab. :-(
And today, we met Miss Sara - Raquel's new preschool teacher. Raquel will be starting school on Monday, and I wanted to bring her by today to meet everyone. I think this will be a really great fit. Miss Sara seems very sincere, great at multi-tasking everyone, and the kids in her class appear really sweet. Raquel will have physical therapy on Monday & Wednesday and speech on Tuesday and Thursday. OT overlaps one of those days, and then Friday is the free day where Miss Sara fills therapy time in with cooking. I'd like to be a fly on the wall for that one!
Here is a picture of Raquel checking out her new classroom. I really think she's going to like being back in school.
As far as Gabby goes, she is finally feeling better after suffering from chronic sinusitus, bronchitis, and ear infections! She's been out of school since Christmas break, but will start again the first of February when the new packet begins. She's been spending a lot of time with her cousin and "BFF", Taliah, and loves having her for sleepovers.
And we had fun making gingerbread cookies the other night - except doing it at 8pm was probably not the best idea on my part...
And today they are celebrating Tali's 5-year birthday by going to Disneyland!!! They were just a little excited to go. Gabby was up at 5:30am packing her bag. Thanks Aaron & Jessica for taking them. I love you!
Tea cup ride, anyone?
I'm so happy to end the week on such a high note. I can honestly say that I have a sense of relief right now and am feeling very, very blessed.
Have a great weekend!
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