Sunday, October 31, 2010

Another trip to the ER

I think we are becoming regulars at the Children's Hospital Emergency Room. It's Sunday night and Meredith and I are still in the hospital after being admitted on Friday afternoon. We will stay tonight and it is likely we will be going home tomorrow after some testing. Last week, Meredith was having more breakthrough seizures and we were treating with Diastat as usual. We had noticed that the last few times we used Diastat it was taking longer and longer to "kick in," up to 60 minutes. Well, by Friday when she had another cluster around 12pm, I gave the Diastat and it never really kicked in. We headed off to the ER. When we got there, they gave her a booster dose of Keppra, and between that and the Diastat that was already in her system, she stopped by about 4pm. We thought we were in the clear, but unfortunately, they started up again around 9pm. She was seizing approximately every 15 minutes until about 3am. They treated with more booster shots of Keppra, Clonopin and Diastat - nothing was working. Meredith had 3 pretty bad "de-sats" (they would happen right after a seizure) where she stops breathing, her oxygen level drops way down and she needs the oxygen mask/bag thing to start again. Finally, around 3am they gave her Dilantin which WORKED. The seizures stopped and she's been, knock on wood, seizure-free since. Meredith had another Video EEG which took place overnight last night. It doesn't appear that this provided us any new information based on preliminary results, but we'll hear the full report tomorrow. She's had 3 other EEG's. The good thing about these trips to the ER/hospital is we end up consulting with different Neuro's and getting their take on Meredith's situation. They are all quite curious about her undiagnosed condition and Greg jokes that they all want to "be the hero" who cracks the case! This Neuro felt there were a few areas we could do further testing for metabolic disorders so we are moving forward with that today and tomorrow via blood and urine tests. We are looking at Creatine and Amino Acids. Meredith will also be getting a skin biopsy and another eye exam by one of the Opthamologists here at Children's Hospital. This Neuro felt that the right kind of eye exam can provide valuable clues that point toward a specific diagnosis. I'm thrilled to investigate a few more areas since our understanding was that there was really no more testing to do. I keep telling myself that each of these crises have us inching toward what will end up being the best treatment plan for Meredith or possibly even a diagnosis someday. I'm not hung up on getting a diagnosis anymore. In fact at this point, I'd be surprised if we stumbled across one. But if we did, it's just that much more information. So we are coming out of this crisis with a new drug since it appears the Keppra's not quite cutting it. Meredith will remain on her Keppra and we are adding Zonegran to the party. She will also stay on this Dilantin for about a week. It's working to control the seizures, but we are told this is NOT a drug you want to be on long term due to side effects. It's an older drug. So this week should give us a good healthy window of time where we can get Meredith up and running on this new Zonegran. I'm anxious to get out of the hospital, but I feel nice and safe here. The hardest part is Greg is in London for the week for work, but Mer and I have had lots of visitors to keep us company. So Halloween 2010 was a bit of a bust for us, but we are determined to make sure Wonder Woman get her time to shine. Maybe we'll just celebrate next weekend when Dad's home and everybody's healthy!

Monday, October 4, 2010

Watch me roll

Original footage was about 12 minutes long. She worked really hard for this one!

video

Friday, October 1, 2010

September Update

It's been a little while since I've checked in. Here's what we've been up to the last few weeks. Yay for fall!

Crazy Hair Update:
Meredith got her first haircut last night! We went to Delarria Salon where my mom and I both get our hair cut by Traci, who we love. She had offered to cut Meredith's hair for us, so we scheduled for last night, and off we went. It took about 5 minutes! Greg came too, so he could watch and take pictures. We went back and forth on whether or not to cut bangs and in the end we did decide to get them. Meredith got to wear a grownup cape and everything. It was very cute. Check out her new do' in the picture of her playing in the water basin in her stander.

Stander Update:
So we've had the stander now for about a month. It has quickly become one of our favorite things, and Meredith really comes to life in it. It's great for her hips, legs and learning to bear weight on her feet, but we have seen the most progress in fine motor and coordination. She is so supported through her torso and lower body that her arms are freed up to play! She's now making deliberate movements with her hands and will reach for an object. She will entertain herself for quite a while with a few toys on her tray. We try for two 40 minute sessions a day depending on how she's feeling. It's working out well transporting to and from daycare. We bring it in on Monday morning and home Thursday night. They are great about getting her in it, and the other kids are very curious and love to bring her toys when she's in it.

Seizure update:
We are still doing our best to manage these seizures with medication. She has been having a handful every few weeks, usually in coordination with an illness. She actually had one yesterday morning and a few today, but is now resting and doing ok. She has conjunctivitis right now, threw up this morning and has a bit of a cold, so maybe that explains it. She had a great streak of happy, seizure-free weeks leading up to this, so we were so very grateful for those. Any day that is seizure-free in our household is a GOOD DAY! This cycle seems to repeat itself every few weeks. Our hope is that in the future, she'll tolerate illness without having seizures as her immune system gets stronger.

Rolling update:
On a happier note, Meredith has now rolled 8 times! She usually rolls to the right, but this last one was to the left AND Greg got to see it! - he had missed the others. Yahoo! It's definitely a deliberate movement which is so great to see : )