Friday, April 30, 2010

Under the weather

My poor Reagan has been sick for over 2 weeks now.  It started around the time we went to Houston to visit the Rett specialist and it was just a runny nose, but like a faucet.  She started feeling better after about a week and then bam...another runny nose combined with a fever and coughing. :(  The fever only lasted a couple of days but I took her to the Doctor anyway to make sure it wasn't an infection.  Nope, just a nasty cold that keeps lingering.  It seems that she is starting to feel better again and only has a runny nose and mild cough.  But, you can tell she does not feel up to par because I have witnessed no less than 3 tantrums every day for the past several days.  And it usually brought on by me trying to turn off the Imagination Movers so we can go outside, eat or just play...none of which she has any interest and makes it VERY clear!  And don't you know that my sweet girl was kind enough to share her fun cold with Mommy.

Here's some positive news though - they did a weight check at the Doctor's office on Tuesday (which was exactly 2 weeks after her last weight check) and she's gained a whopping 6 ounces!!!  Yay!  I was really shocked considering that she wasn't even for a week before that because she wasn't feeling well.

I haven't posted any recent pictures lately but they will be coming soon!

Wednesday, April 21, 2010

Just one of those days

Yes, some days are just better than others.  Today had a fair share of high moments, like when Reagan rocked her physical therapy appointment this morning or when I interviewed a wonderful lady to watch the girls one day a week while I have some Mommy time.  But there were the low times as well, like getting pooped on while at the said aforementioned therapy appointment early in the morning (thanks Lauren!) or ending the day cleaning up vomit.  My poor Reagan hasn't been feeling well this afternoon and had quite the time with an upset stomach.  I think she feels better now since she crashed within 5 minutes of going to bed!  Here's to tomorrow...

Tuesday, April 20, 2010


I took my 2 cuties out for a walk this afternoon to enjoy the beautiful day.  I happen to catch them looking very alike and was even able to catch a picture of it on my phone (sorry for the poor quality).  Excuse the socks, yes- they are socks, on Reagan's hands.  She now puts her hand in her mouth non-stop, which breaks down the skin on her hands and around her mouth.  The official Rett term is called "mouthing" and it is one of the many stereotypical hand movements that the girls can make.  Reagan started mouthing about 6 weeks ago and it started as being barely noticeable.  However, within a month it had become so frequent that it began impacting her ability to focus and feed herself.  We recently discovered arm splints and she wears them for a good portion of the day now.  They look similar to a cast and keeps her arms straight so she can't get her hand to her mouth.  I was very hesitant at first to use splints but after seeing how much more she can focus when she isn't so intent on mouthing made me realize that it is for her own good.

Visit with the Rett Specialist

Last week the family packed up and took a trip to H-town (Houston) for Reagan's much anticipated appointment at Texas Children's Hospital Blue Bird Rett Clinic.  The Rett Clinic has a team of Doctors that specialize in Rett Syndrome.  There are several clinics around the country but I'm happy that one is only 2 hours away from us!

We visited with Dr. Glaze (neurology) and his nurse Judy, who were both wonderful and incredibly insightful of our new world of RS.  He talked to us about the possibility of seizures, cardiac problems, weight gain, stereotypical hand movements, and current RS clinical trials.  We were excited to hear that he thinks Reagan will continue to walk!  He gave us a prescription for Carnitor to increase her energy, focus, and improve muscle tone.

We also saw Dr. Motil who specializes in GI/Nutrition and this was the appointment that I was most anxious about, and it turns out for good reason.  I have read that continued weight gain can be an issue and was concerned since I have been having trouble with Reagan eating and keeping food down.  She gave me the grim facts, she must gain 3 pounds (increase from 26 to 29 lbs) by her next appointment in 6 months or we will then have to discuss possible feeding alternatives.  She is in the 50% percentile for weight in  her age group (among typical children) but her BMI is only 10% because she is so tall.
I was even more nervous about her gaining weight when I realized that she has only gained 8 ounces in the last 3 months.  How would we ever get her to gain 3 pounds in 6 months?!?
Dr. Motil gave us some good feedback on food ideas and said that any type of high calorie and/or high fat food she be given at every opportunity.  So, Wes went on a mission that  night at the grocery store and came home with some things that make me gain weight by just looking at them:  whipping cream, syrups, cream fruit dip, whole milk, Carnation instant breakfast, bologne, hot dogs, spray cheese spread, full fat yogurt and honey.  We also use Boost Breeze drink to add calories.  She is now getting about 1400 calories day (and 60 grams of fat!) and already feels more solid after just one week so I am very hopeful!

Reagan has an EKG today to monitor her heart for the long QT Interval (creates an irregular heart rhythm), which can be common in girls with Rett Syndrome and possibly explain sudden death.    We are hoping that it comes back normal today and then we will have it monitored every few years to make sure that there are no changes.

Thursday, April 15, 2010

Long overdue update

Well, time has gotten away form me I have been so bad about making time to post.  But, I have a lot of updates to give so be patient :)
First, the girls and I went to MawMaw & PawPaw Carson's house in LA for a 7 day visit.  I was craving some good Cajun food (crawfish everything!) and time with my family.  Reagan and Lauren both had a great time and also got to enjoy a visit from MawMaw & PawPaw Parker!  Reagan really enjoyed walking on the deck overlooking the water and also "chasing" the Pugs around in the large front yard.

Then there was a visit from the Easter bunny:

Then we took some fun pictures in a blue bonnet field:
So, there is an update on the last 3 weeks in a nutshell...more updates to follow soon!