Monday, March 30, 2009

The Reason I Get Up Each Day

After my last two posts, I am so happy to be able to post a positive post! Caitlyn is doing WONDERFUL!!!! We are still struggling a little bit with the feeding, but most days are going great!! It seems something is working!

We are on spring break this week, but Caitlyn finished off the week with a bang last week!!! Her 1:1 reports that Caitlyn had some of her best days ever in Gen-ed. Thursday she went all day without any need for a break! In fact, she came home and went strong until she crashed for bed at 7:30! The other kids in gen-ed seem to be noticing a change in Caitlyn. She has been so happy this past week! She was playing with some blocks with a couple of other girls, and they were tapping Caitlyn on her shoulder and saying her name. She was turning towards them! We are sooo excited with the changes we are seeing in her...

Now, maybe someone can tell me why...The Depakote seems to be affecting her eating in a good way. Could the joy, happiness and attentiveness be improving because of the L Carnatine? Or could it simply be that she is getting enough to eat, and isn't having seizures? What ever it is, I am sooooo happy to see this side of my little girl!!

So happy in fact, that I want to share it with every one! Last fall I promised everyone a picture of Caitlyn on the swing at the park...The shot of pure joy on her face was sure to brighten every one's day...Well, I couldn't get her to smile and look at the camera, so I did one better...We went to the park with Crystal and her three kids yesterday. The weather was chilly, but beautiful! I captured some joy to share with everyone. We have seen/heard very little in the way of tears in our house in the past four days...It is these times that I carry with me. The are the reason I can get out of bed during the bad times...Enjoy the happiness...(If you listen carefully, you can hear her giggles. We have heard a lot of those lately!
video

Wednesday, March 25, 2009

Feeling so blessed

I hate Rett Syndrome, but I don't think there is any other community that is as supporting in a time of need! We are struggling, but our Rett Syndrome family is here for us, and that feels amazing!

To answer Brandi's question, Caitlyn is not a milk drinker. Rarely we can get her to drink a few sips of strawberry milk, but it is few and far between. When we took her off of the bottle at 18 months (before diagnosis, or I don't know that I would have taken her off the bottle!) she quit drinking milk like she had before. We did find Ensure has pudding now, so we may try that.

To add to everything, Caitlyn has developed a sore on her tailbone. I am going to look at in when I got in to give her a breathing treatment, but I'm not sure yet what it is. It appears to be like a pressure sore of some sort. Hopefully it will heal quickly.

Tuesday, March 24, 2009

Rett Syndrome Strikes again?

Well, here is the update I promised!

First, here is the connection we seemed to have made. In mid January, we upped Caitlyn's Zonegran to 250mg. It seems that for the first time, we got hit with a side affect. We started to notice small changes in Caitlyn. First, we noticed when we were changing her that her tail bone was sticking out. Slowly we began to notice other changes. Her pants were needing to be cinched up more, and some were falling down that hadn't been before. To someone on the outside, the changes were subtle. To her mom and dad, they were huge, and coming fast.

There were nights when we would be lucky to get enough food in her to give medications. Some mornings she wouldn't even finish one package of oatmeal. It was a struggle, and became a fight to feed her sometimes. We would even make 3 different dinners, thinking maybe she didn't want what we had fixed...Our life was revolving around food...

Last week we headed to the Nuerologist for a check up. The last time she was there was December 1st. They weighed her, and she was down a full kilo. (that is 2.2 lbs) He decided to add Depakote to her med list, as it is supposed to be a appetite stimulant. Once we get to a comfortable level on the Depakote, we will taper off on the Zonegran. He said he'd rather her be middle of the line on two different meds, instead of topped out on the Zonegran.

So this appointment came in the middle of a nasty cold that hit our house. This cold had Caitlyn not eating at all on some days. She would get in these coughing fits that would make her start vomiting. It was horrible! Then I hear she has indeed lost weight...grr..So, I scheduled an appointment to meet with her Ped. and discuss our options. (we also saw another doctor in the clinic last week, and started breathing treatments for Caitlyn's cold. That got her eating again and gave her a bit more energy)

Today was our appointment with the ped. Let me just say, my daughter's pediatrician is the most amazing person in the whole world! He really cares! And to top it all off, he has an adult son with Cerebral Palsy. (I'll tell you a bit more about that in a second) So we discussed everything. He seems to think the Depakote will help a ton! I sure hope so! In the mean time, we will be seeing a nutritionist, and having a swallow study done. We don't expect the swallow study to show anything more than immature chewing, but want to cover everything.

So, we nervously brought up the g-tube issue at our appointment. We talked about how we can sit for 1/2 an hour and get very little in her! He shared with us some of his own experiences. How they look back at pictures of his son and his face with no meat on it...How he remembers trying to feed him with a syringe, fighting with each spoonful. He said he has never spoken to a family that regretted their decision, but that most said they wished they would have done it sooner. He said we will go with our plan for the next few months, and if in the end we haven't seen progress, we can honestly say we tried everything we could. It does feel wonderful to know that he completely supports us, and we support us if we decide that a g-tube is what Caitlyn needs. It doesn't make that decision any easier, but for now we will just keep an eye on her, and add butter and cheese to EVERYTHING that we can.

It is wonderful knowing we have the support. I will update as things change. Right now, my "skinny mini" (as we like to call her) is 38 lbs and 3ft 10.75 inches tall. Her BMI isn't as low as first thought, but it is lower than it was, and below that magical 5%. Please pray for her weight gain, and the sanity of mom and dad during meal time struggles!

Tuesday, March 17, 2009

Preparing an update

I just wanted to let all of my readers know that I will have an update up within the next week. We have some news to update, but I'm waiting to share it. We have an appointment next Tuesday with Caitlyn's ped. to discuss some things, and then I will come and update everything. Just pray for my little girl right now...