Can Things Really Be Falling Into Place?

I like to think that I'm a "cup's half full" kind of girl. I typically always look for the bright side in bad situations just because that's how I am. And that annoys a lot of people. Trust me, I know who you are!

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!

Annual IEP Complete

First - Happy New Year, and I apologize for the lack of posts. I've promised to keep up with Raqi's blog much better this year. I don't want everyone thinking things are the same, because they aren't and she continues to adjust to her meds better and better and make progress.

A few weeks ago - before the Christmas holiday break - I met with the school district and therapists so they could do their yearly assessment of Raquel. This enables them to put new goals for her in place as well to modify the old ones as they see fit. I didn't really know what to make of the assessments because they are typically handled very poorly (for Raquel), and I struggle watching them judge, make opinions, and talk among themselves about what they feel she can and can't do. Plus, she's been out of school for quite awhile and I didn't know how she'd handle being in a classroom setting - especially with me having to interrupt her nap in order to get her there.

This year, my respite worker Christy came with me. I'm inundated with questions from a room full of people, and I really needed someone to help with Raquel so I could effectively answer all these questions. Gabby also came with us. She's come to know the school therapists pretty well, and now that she's a big-time 3rd grader, doesn't hold back on her comments. So this time, whenever a therapist would say this or that, Gabby would interject with her two cents. And they actually listened to her! At one point when the Applied P. E. teacher was trying to get Raquel to do something, then commented to the district psychologist that it was a skill that she couldn't accomplish yet, Gabby said, "No - you need to do this!" and low and behold, she did it.

Overall, the assessment went really well. Raquel was confined to doing table time and sat between two therapists going back and forth with tasks for about 20 minutes. At that point, she slipped in her chair and bumped her chin and started crying from that, and they let her out. She then roamed the room and her teacher commented on how she was remembering everything. Raquel even went to the exact spot where her name tag use to hang. She clearly remembered the classroom and everyone in the room commented on what a different kid she was since the last time they've seen her.

The day after the school assessment, the district psychologists came to the house to do their in-home evaluation. Again, Raquel was very calm and cooperative. They were very happy to see such a change in her temperament. I'm glad they noticed.

Today we had her annual IEP where all of us get together - outside of Raquel's presence - and discuss progress, goals, transitioning her to kindergarten (YES, KINDERGARTEN), etc. It's typically a tough meeting for me and Mike was working so I had to do this one on my own. I have to say that, again, it went really well. I think I've come to know these people better, and now that Raquel has a diagnosis of Landau-Kleffner Syndrome, they've acknowledged that and are much kinder with words.

Raquel will most likely be starting back to school next week, once I get all the paperwork in order and am given the green light. She won't be in the morning class any longer and instead going to the 11:30 - 2:30 time slot. I think this will work out much better since I have to give her meds in the morning, and if she was in the morning class, they would be responsible for doing that. I think that would aggitate her, and we all agreed that school needs to be about academics and not them getting her upset trying to get accurate doses into her. This will also work out much better for me with getting Gabby to school and stuff. I will no longer be rushing around to get one here and another there in a short amount of time. I have a sense of relief in that regard already.

I also think it will help keeping Raquel's morning routine as consistent as possible. The medication makes her tired and she typically doesn't wake up until 7:30am. If she is in the morning class, I would without a doubt have to wake her up each and every morning, and I don't think that would be a good thing. She needs time to wake up on her own and start her day when she's ready.

All in all, feeling pretty good about this right now. We have her neurological follow-up in a couple weeks, and will go from there.

I'll post again soon. And, yes - with pictures. :)