It was a whirlwind Trip to Texas and back for us.
I am completly exhausted. Emotionally and physically.
Brooklyn was a trooper. She traveled so well! We met with Dr. Motil who gave us tips on "fattening" her up. Our goal is for her to gain 1/2 pound a month over the next six months. For those of you without a Rett girl, this sounds easy. It's not! We are doing carnation instant breakfast mixed in whole milk three times a day in addition to her three meals and snacks. As far as the meals, the fattier the better. Think of it as everything we try to avoid eating to lose weight we are to give it to her. Yummy things like whipped cream, syrup, honey, peanut butter, gravy, ice cream. All of it!
Dr. Motil has asked us to get an upper GI to try to determine if Brooklyn's fussy times are indeed gas or if maybe she is having reflux issues. We are starting her on Prevacid as well. Also, she has recommended a Swallow Study as many Rett girls have trouble chewing and swallowing. Brooklyn does have some issues with this.
We spent tons of time with Dr. Glaze and Nurse Judy who are Rett Specialists. They were great, they know SO MUCH about Rett Syndrome and our girls. Most of the time was spent with us giving them information on Brooklyn. Things she can do/can't do. When we noticed "problems," how we first heard of Rett Syndrome. I actually was VERY proud of how much of what they were saying I already knew. Like most moms, as soon as I got her diagnosis I dug in to every possible bit of information I could get my hands on regarding the disease.
I do have to admit, it was WONDERFUL being seen by doctors that know Rett Syndrome and I was impressed that they took their time with us. We were at the hospital 7 hours total. Dr. Glaze does want an EKG done as well. So unfortunately there are quite a few hospital appointments/tests in our near future but these results will ease our minds quite a bit.
They also enrolled her in a "rare disease" study which mainly means that all of her tests/future appointments will be gathered and tracked in a database to be compared with other girls. There is so much I could write tonight but to be honest I cant even think straight right now. Charlie and I were forced to think about too much "stuff" over the past 48 hours.
I want to kick back and relax. It is getting ready to storm....there is nothing better than falling asleep listening to the rain coming down.
Here is a picture of Brooklyn after her long day at Texas Children's Hospital. I was so proud of her! What an angel!
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5 comments:
I'm glad you guys had a good appointment! Best of luck to you guys on the weight gain! An idea for you, in our grocery store's Hispanic section, they have table cream. We just add it to everything! Also, have you tried pediasure? We are sitting comfortable with weight now, but eating lunch at school is posing some problems..."Your daughter eats for the full 20 minute lunch and still doesn't finish..how much time does she need?" Ofcourse our answer was "until she is out of food, or clearly no longer interested!
What a sweetie she is!! Glad the trip went well. We did the same a few years ago when Brooke was first diagnosed and I couldn't agree more with the wonderful feeling of talking with people that KNOW Rett Syndrome!
One other suggestion on the weight gain. Dr. Motil told us about a product called Benecalorie. You can order it from Walgreens website with free shipping. It's a very small amount of liquid that packs a big calorie punch and you can mix it with just about anything - I make shakes for Brooke and just add it in. I'm going to check out Rebecca's table cream idea though - may be cheaper.
Ahh such lovely pics!
We to have to battle for my son to maintain his weight. Its a difficult one.
We missed you Brookie!! We are glad you had a great trip!! Jackson & I can not wait to hang out with you and your mommy & daddy this weekend! We love you!
We are so glad you all had a good trip! Looks like you were a real trooper Bwook! I hope you and your Mommy and Daddy get to relax this weekend!
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