Baby Steps

Wednesday, April 3, 2013

Seizures, seizures are no fun

Well it has been a long time since my last post. Honestly, March was one of the worst months Piper has had in a long time so I haven't had a lot of postivie things to write about. We have kept busy getting the stuff ready (tshirts, bracelets and brochures) for the expo this weekend and training for the 1/2 marathon. We are putting all of our energy into the big fundraiser this weekend for Piper and Aicardi syndrome.

She was sick for about 3 weeks in March and it started with a fever of 104. Since Piper has never had a fever it was a whole new experience for us. She had the worst seizures we have seen in a while and it was not fun at all. She had a pretty bad cold for about 2 weeks and then she started getting better. We thought she had finally recovered until her fever spiked up again. We took her to the doctor and found out she had an ear infection, which was another first for her. It took her about a week to start feeling better but she is still not back to her usual self and it has been a week since she had been off antibiotics.

During the time she was sick and now her seizures have been out of control. We know that is to be expected when she gets sick but now that she seems better we thought they would slow down a little. While she was sick we noticed a new "drop" seizure that we haven't seen before. We actually took her in yesterday to the neurologist to see what he thinks we should do. He wants us to do another 6 hour EEG next week so he can see what is going on. Not a lot of fun for either one of us but it needs to be done to see exactly what is going on. With all of the seizures she has started regressing again and we are reteaching skills. We always know this will be an issue but it is really hard to see her basically starting over and having to try so hard to learn again.

She is doing okay with feeding so that is a good sign. She has forgotten some skills so we are back to the basics again.   While she was sick she missed a lot of therapy and we are back to just trying to get her to stay awake. The last physical therapy before she got sick she was using a gait trainer, which is a very big deal! She was strong enough to keep her body, head and chest up while taking a few steps. We were absolutely thrilled! Now the issue is getting her strength back up to be able to do that again. We learned today that both our speech therapist and physical therapist are moving in 8 weeks so we will have to start all over with someone new. So we will be losing 2 of our amazing therapists and we will really miss both of them. Luckily, we are all flexible and used to things constantly changing.

 using the gait trainer at therapy

In the middle of all the sickness and seizures Piper has had a few good days here and there. She had a great day Saturday and was happy and vocalized all day. We can only hope that we start to see more days like that. We are all praying that this weekend goes smoothly. We want to thank everyone who has supported us so far by purchasing tshirts and bracelets. We still have tons of shirts and look forward to selling more at the race this weekend. If you have a shirt, please wear in on Sunday while we run for our sweet girl. If you are downtown Saturday come by the convention center and see us.  Thank for supporting our family and GO TEAM PIPER!