Holter Monitor

Mallory was put on a medication for her behavior last winter. Because of her heart defect, we were pretty limited on what meds we could use. Most meds for ADHD stimulate the heart. Sadly to say the med we have been using is not very effective. In order to put her on a more aggressive medication, her cardiologist recommended a Holter Moniter. The monitor studys her heart for a 24 hour period looking for abnormal rhythms and rates. If her study comes back uneventful then we can try some new meds.

Today, I took Mallory to the hospital to get her monitor. She was excited. Mainly because of all the attention she was getting.

Mallory laid very still when they applied all of the patches for the monitor. The big question is how long will they stay on?

All done and ready for the day. I wonder how many times we will replace patches or reattach wires over the next 24 hours.

A little break...

Our luck has turned............for the better. With the services established for Mallory, we now have a personal attendant. She will work a few days every week with Mallory on behavior and social skills, but will also give us some much needed respite. Believe me...I love Mallory dearly, but you have to be able to recharge your batteries once in awhile.

Last evening, was Mallory's first evening with her personal attendant- P.A. It went great. They are working on settling into a routine. THIS will be beneficial for ALL of us.

Relaxation

We had family in Abilene last weekend for a visit and we took them on the Abilene Smoky Valley Railroad. Mallory did really well on the train ride. I think the swaying motion of the train is relaxing for her.

Mallory checking out the scenery.

Mallory lounging on her cousin Morgan and a lady that she just met that afternoon. Mallory likes to seek out people when we are out in public. Fortunately, most people are very understanding and accomodating. As you can see in this picture, Mallory was very comfortable, resting her legs on the stranger she had just met!

Malory lying down on Ashley's lap and playing with Jacob. Or as Mallory calls him "Jake".

Great Weekend!

Well I guess we did something right this weekend..............

We had family back from Virginia and I made the bold move of getting a motel room so that we could enjoy some time with family. Our previous experiences with overnight stays have not been smooth or pleasant. I really dreaded the stay.

We drove up Friday afternoon, and attended the county fair parade. We were blessed to have dear friends there whom have a son with autism. As Mallory ALWAYS does, she migrated over to another family. Luckily, it was our friends whom were VERY accomodating and understanding. Mallory sat with their family and had a wonderful time. This also gave Todd and I actually some time to take in the parade and watch Matt & Hannah.

Later that evening, I headed to the motel with Mallory and got her settled and ready for bed. She fell asleep quickly and stayed asleep till 5:15 a.m. She then lounged around and watched TV until the rest of us got up for the day. Pure Bliss!

We spent all weekend with our large extended family on the Walter side, Mallory handled all the excitement and changes in schedule very well. Almost NO behaviors!

It was a great weekend!

Time with Dad

Todd is on vacation this week. When I left this morning to take the kids to daycare and go to work, Todd took Mallory to breakfast. She was pretty excited to hang out with her dad. We have found that the one-on-one time works wonders.

Glasses

Mallory has had her glasses for a week now. We have been "conditioning" her to them. She wears them during the day, supervised, and only for required activities. She has done better than expected with them. Whenever she has them on, she gets very excited, and vocalizes and signs to me "Momma, I see!"

I started this blog as a way to reflect on all the aspects of raising a child with Smith-Magenis Syndrome. Every day is a mountain to climb, never knowing how far you will get, but always striving to reach that peak.