Thursday, March 27, 2008

Holiday at Childrens Hospital


At least it was Easter and not Christmas! My mom and sister cooked the usual stuff and brought it to the hospital. Kenai got to see Elliet and they played together the whole time. No egg hunt but I think they'll (I mean I'll) get over it!
We got to come home Tuesday and Kenai has done great so far. Only one seizure in the last two days. We will be following up with a great neurologist. The one we had before is great on paper but we never saw him and neither he nor his nurse could be bothered to come all the way down the hall to see Kenai while we were inpatient. So we feel good about the future and just hope we can go a little while here without any major upset. She'll also be starting occupational, physical and speech therapies next week and will continue those twice a week.
Here's hoping life smooths out a bit!

Friday, March 21, 2008

Apparently I spoke too soon...but she was SO MUCH BETTER! Today is the same old stuff, seizures all day, Kenai lost behind them somewhere. The doctor called yesterday a honeymoon period with the new drug.
The next drug they would consider can have strange side effects and takes TWO MONTHS to climb to therapeutic level. We won't even know if it helps until then! They are also giving her a helmet because of her drop seizures.
I'm losing faith in the idea that she'll be fine anytime soon. Please keep up the prayers.

Thursday, March 20, 2008

Updizzle

Okay folks, we finally have some (cautiously) good news! She started a new medication last night and she has been SO MUCH BETTER today! I've been giddy all day, now I'm trying to stop the hyperventilating so I don't pass out!
I'm trying to be careful, knocking a lot of wood...but she's just so much better that we feel like she's turning a corner. The doctors are so much better, even the same ones we had last week. Maybe it's all the prayers. Each day we are seeing occupational and physical therapists and today the doctor said we could get speech up here too. This is great because it should catch her up where she's fallen behind due to all the seizuring.
So, we are optimistic. Please keep up the prayers and all, it seems to be working!

Tuesday, March 18, 2008

At the Hospital AGAIN

We're back at the hospital. Same as last time, she's having seizures all day long and nothing seems to help. Yesterday she fell with a seizure and now has 3 stitches in her forehead.
We're starting to freak out a bit so your thoughts and prayers are very much appreciated.

Friday, March 14, 2008

Home Again

We're finally home but Kenai's condition is pretty much the same. We're exhausted and frustrated and hoping maybe the new meds will kick in soon.
Jedd and I got to see new bebe today but we couldn't get a picture to share. It's amazing how fast they go from "bean" to "jumping bean with little arms and legs". It was exciting to see and made the whole thing more real for both of us.

Wednesday, March 12, 2008

FYI

We are back in the hospital. We came in Sunday night after a couple long days of multiple seizures. Feels like we've been here forever now and while I welcome the break from the constant vigilance at home, this is getting really old. My assignment to myself when we are settled at home is to find doctors who practice a more holistic approach to epilepsy. We've been plying this child with more and more medications but no one here seems concerned with "why". Why these different kinds of seizures? Why so sudden? Why a month without any and now this?
I can't help but think there is a major trigger lurking in our house. Then I feel silly and alarmist and make myself chill. I'm sure that someone, somewhere is researching epilepsy (you'd be amazed what they don't know about such a common condition) It seems to me that the best research could be done right here with the patients, looking for common triggers and related disorders. Is congenital vertebral malformation or even food allergies really completely unrelated??

On a somewhat different topic, the on-call neurologist this week is my sister's neurologist. He is a bit of a star in his field, listed as a top doctor in Cincinnati and adored by the families he treats. During rounds, he asked if he could tell the team about Erin and proceeded to tell them she was 31...with Rett's. (pause for dramatic effect) One of the resident neurologists said she had done a double-take when reading our chart. He went on to praise the level of care my mother provides. He counts the care Erin has received at home as the main reason she is even alive but even he does not seem to look beyond which medication might work for Kenai. Odd.
The greater point of that being, my mom is pretty awesome.

Friday, March 07, 2008

Posing




2 Weeks Out

Kenai seems to be healing very well, her incision looks great and her curve is getting better. She will need physical therapy in a few weeks to work on the muscles in her neck that are still trying to pull her head over. She's really good about wearing her collar, even when her neck hurts.
This weekend she started having seizures after having only one in the last month. She had four between Sunday night and Monday morning. We've added some medicines to her routine (she's up to 6 kinds a day) This seemed to help until yesterday when she had several more seizures, one of which knocked her to the floor. Her post-op appointment was yesterday so they did x-rays to make sure the fall didn't hurt anything. Then our surgeon gently laid into our neurologist's nurse practitioner about doing whatever they need to do to control the seizures over the next few weeks while she's healing. So they've got her doped up pretty good. She's on more medications than she would be (without surgery) because they need to switch meds while keeping her from seizuring--not an easy task. So she's doing well but still needs prayer, still not totally out of the woods. It seems that we'll have less to worry about in about four weeks.


Monday's itty-bitty taste of spring: