Gracielicious

The Beautiful…



 

The Good…

Well, we had great news Wednesday when Gracie's teacher stopped us when we were dropping her off at school. He said they have been discussing with the other teachers and therapists to move her up next year into a more advanced class! They said she continues to amaze them everyday with how quickly she learns and how smart she is. They already moved her into a more advanced class at the beginning of this year and she is ready to move up again. This will still be a special needs class although most of the kids are able to walk but some of them cannot talk as well and have developmental disabilities. Her teacher (Mr. Mike) says that she is well on her way to learning to read with how quickly she recognizes words! When we get her "talking tool device" we will be able to understand even more of what she understands! We are so excited for her and so proud! She also took 2 steps without holding on to anything a couple of days ago…but they were very small and unbalanced and she fell. Don't get too excited though because she is a long way from walking and we are still not sure she will ever walk without some sort of walker assistance but this was so cool to watch and she was so excited and laughing so hard she couldn't keep her balance. Her torso is so weak and her balance is so bad it makes it so hard for her. We are hoping to get her into hippotherapy (horse riding therapy)…this is supposed to really help to strengthen her torso. Unfortunately, there is a 2 year waiting list as there are not many horse therapy places around, so we just hope they have some cancellations and it won't take 2 yrs. Her PT also got her to walk about 10 steps in her walker with only the sling seat in it and no other constraints! Also, Gracie has never said a single word…she only makes sounds like an infant would goo-goo, gah-gah, etc. Last night Jerry was asking her if she wanted to go nite-nite and she shook her head no and said no!!!! It wasn't a clear no, but it was more like na…but it was a definite no for her along with the head nod no! We were so excited we kept asking her questions we knew she would say no to and she continued to say it again a few times more and then got bored of it…we wanted to hear it all night! How many parents want their kids to tell them no? Not many but she can tell us no all she wants! J

 

The Bad…

Gracie had a major seizure Friday morning. She woke up around 1:30am ready to go for the day (of course she was the only one ready to wake up)! She ate and watched cartoons and then was ready to go back to sleep around 5:30am. She was asleep for about 3 minutes and started seizing. It was a big one like she used to have before she started on the Keppra medicine. Her entire left side was tight and jerking so hard...it was so heart breaking . L We had to give her the Diastat medicine to stop it, which we haven't had to do for 3 years. Gracie didn't even start having seizures until she was 2yrs old and they then put her on Keppra and it kept her seizure free again for 2 ½ yrs and when she started having them again they were very small and stopped on their own after just a couple of minutes. Unfortunately, this time was different so now her neurologist wants to check her Keppra level to see if it's at the level it should be to "work". They will just have to draw her blood to check it so not too invasive. The strange thing about her seizures is that we have noticed a pattern that every time she has one she starts doing something new. Almost without fail, when she starts doing something new, shortly after she will have a seizure. Days before this seizure she started really trying to walk (like I mentioned above in the good) and then a day after the seizure she became much more vocal and started saying no! I know seizures are not good and we absolutely hate it when she has them but it always seems like something good happens around the time she has them…really weird!

D

Labels: Uncategorized