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Sunday, December 21, 2008

The Brooke Update



So let's start with a Peanut update -

1. We are now the proud owner of two giant front teeth (a great improvement from our poor little ground down, banged up front teeth that just overstayed their welcome).

2. We are still riding the "mood roller coaster". For those not in the know - after Brooke has a seizure (usually when she is sick) she is the happiest camper ever for about the following one to two weeks - calm, alert, patient - let me say that again PATIENT. Then it's back to the screaming, anxious Brooke until the next time. We're still trying to figure this out (and if there are any other Rett mom or dad's reading this with insight, feel free to share). We spent Labor Day weekend at the Cleveland Clinic for a 48 hour EEG to learn basically nothing new (I'm going to add this to a topic list for a later post - there are some good stories to share from that adventure - even though an answer to this puzzle wasn't one of them).



3. We are still swimming every week with Miss Karyn - and seem to have mastered the dive from the side of the pool trick. It's really pretty cool to see - maybe not as cool as Edda feeding herself a pear with a fork, but still pretty darn good. (I might even have video - I'll add that to the same list mentioned above).



4. We are also seeing Miss Glenna (you may remember her as speech therapist extraordinaire) every week. And have added a great speech camp for non-verbal kids to our agenda that we found about, oh, five minutes from home at a local college (that Jeff and I both attended no less). I think we're making some progress in the communication world - but if we could get a handle on #2 (and by that I mean the item listed above - not pooping - although that wouldn't hurt either) it would help move that forward tremendously.

5. School is going okay - mostly made difficult by that pesky #2. Brooke does have a new aide this year, Mrs. Blair, and she seems to be quite attached to her. It also seems that she is handling her time in the typical classroom better than last year. So although I still wish we could be doing more - I'm happy for those little improvements and realize the challenges we need to overcome.

6. Right now Brooke is getting over the sick we've all had lately. This has meant seizures for her. She usually has an extremely resilient immune system and is over stuff like this in just a few days but this time it's really hanging on so more seizures than usual. And as much as I hate to see her go through them - this means we are now in the "honeymoon period" of our seizure/mood schedule. Which, honestly, could not have timed out better with the holidays. All of this usually annoying and hard to handle change in Brooke's routine has been a breeze. So I'm just going to enjoy it while it lasts and let Brooke do the same.
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8 comments:

Caitlyn said...

How exciting to see an update! And exciting to hear that she is doing good with her time in the general ed classroom. Caitlyn has her good days and bad days with that. I'm sorry I can't offer any insight as to the mood change with the seizures. But, enjoy a Merry Christmas with the lessoned mood!

Mom said...

I'm so amazed with the diving. I've got to schedule a vacation day so I can come out to watch Brooke in action. It's been a while since I've been to a swimming session. See you all later today. I probably should wear a mask since I'm now battling round two of the cold that refuses to go away!

Doris said...

Hi guys! Happy holidays - you know, I realized that I don't have your email address - shoot me over an email when you have time at turnip (at) gmail (dot) com.

Karen said...

I'm so happy to see you blogging, Sam. I bet Brooke really enjoys swimming. How fun for her. How was your Christmas?

lyndie said...

i really like the top picture of brooke. the way the light is falling on her head... i get an immediate sense of a perfect fall day.

Jennifer Sizemore said...

welcome back to blogging!!! I was excited to log in and see the update. Sorry about the EEG results - it has to be frustrating! Please get that video up soon - I can't wait to see her dive!

Avery said...

i dont know if brooke is a candidate for it or not but we started avery on zoloft 5 days before christmas and it has made a huge difference! She is much happier and less anxious. It is the miracle drug in my eyes---it brought my non-verbal son out of his shell and I am now the proud mom of a thriving Kindergartner(who is more than likely NOT going to need an aide next year!!!)

Good luck!

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