I feel like I start every blog with saying its been a crazy few weeks, but again we have been busy.
We had a wonderful vacation and Piper was so happy the whole time. We began the phenobarbital wean last month so we started seeing real smiles around the time we went on vacation. Let's just say I have taken pictures non stop. It's been so long since we have seen our smiley pants and every smile just melts my heart. Piper has now been off of pheno for three days. We have seen a few more seizures but not a huge increase like last time. Hopefully it will just take a little while for her body to get adjusted. She is still smiling and has even laughed a few times. On really good days she is very vocal and her body is getting stronger. We didn't realize just how sedated she was.
On the other end of this she is finally able to feel the negative stuff too. Before she never cried unless she was having seizures. She never seemed to express any emotions. Boy, has that changed! Now she expresses them like never before. When she is tired, hungry, bored or hurting she just screams. I mean screaming at the top of her lungs. She screamed for three hours straight the other night and the second we got to therapy on Friday. We had to leave because we were disrupting the other kids. It's definitely something I have to get used to because she is normally so mellow. She had started screaming for attention and when she doesn't want to do something. She knows how to get what she wants!
In the past couple weeks she has really shown an interest in sitting. She actually will pull herself up from laying down to a sitting position without using her hands. She is determined to sit and gets very angry if she can't. It's a good thing because she is so stubborn and has already made progress. We should be getting a chair for the house that will help her learn to sit.
We got two pieces of equipment yesterday that took about 6 months to get. She now has a wheelchair/stroller that is very supportive and she already loves it. We took her out last night and she was able to see things around her and was very happy. We like it too, but its pretty heavy. It weighs 42lbs which is about twice as heavy as the chicco stroller we used before. I may have to lift some weights to stay strong enough to move it around all the time! Thanks to Piper I'm in the best shape of my life!! We also ordered a "stander" but our insurance denied it because they said its not medically necessary. We have started the appeal process so we will see what happens. Luckily, the company we use has extra equipment to loan out while people go through appeals. So were able to borrow a stander! This is really great because it will help her hips and feet since they are not working they way they should. She really likes it and was in it for over an hour yesterday.
Last week I took her to get fitted for leg braces. She will have braces that will help her feet stay flat. She will wear the braces all day. They will also be helpful when she is in the stander because they will force her legs and feet to be in the correct position. We will see how she will tolerate those!
In October she has a few procedures planned. She will be doing a sleep study to check for sleep apnea. We noticed that she is snoring at night and sometimes makes unusual noises. Children with low muscle tone don't always gasp for air while snoring the way they should. I will be taking her to Children's hospital for an overnight study to see what she is doing when she sleeps. It may be a challenge because since she is off the pheno she never sleeps. She doesn't take naps and only sleeps about 7-8 hours on a good night. Saturday and Sunday she slept 8 hours total. We have tried everything but she just doesn't sleep. Hopefully she will sleep for the study.
If she is not having sleep apnea we will have a follow up ERG. An ERG measures how your eyes are processing light. She has had one before and has to do one every 6 months to stay on her medication. They had to push our appointment back because if she does have sleep apnea then it is dangerous to sedate her for the ERG. We will see how the sleep study goes to determine the next step.
Overall, she has had a really good 3 weeks. She has a personality again which is great....even when she screams. She is very alert, playful and seems happy. Honestly, we just want her to be happy and as healthy as possible. We are very blessed!