Mesa Messenger: September 2007

Getting Stronger!

These pics were just taken this week. Despite being very sick with respiratory infection, Addie has had a big week. She pushed up on her arms for the 1st time and said, "Bye Bye Dada."

Everyday Life

Just swingin'

Megan has done really well teaching herself how to swim this summer. If she would put her face in the water, then she would most certainly be a fish.

This girl loves to read and pretend that she is a teacher reading to the "kids." Sally always gets in trouble. (We don't even know a Sally - go figure!)

Addie loving the Mexican guitar/singer at the Mexican restaurant.

Grammy with the girls.

Arcadia Farm

Renee and I took the kids to a farm that is set up for a Pumpkin Patch and hay ride. The kids had fun climbing on hay bales and playing with the bunnies.

After being a loyal OU basketball fan for the last 3 seasons, Megan finally was able to attend a football game. We have shyed away from FB since they require a ticket for children, it is outside, our seats are far away from the field, and the length of FB games. All of that said, we had to bribe her away from the game in the 3rd quarter because she was having such a good time. We were hot and OU was killing Utah State. Here are some funny pics of Megan and Cole.

Play Stop

Megan and Addie enjoyed a few hours at Play Stop a few weeks ago.

Back to Missouri

This trip to Missouri was when the cool front hit a few weeks ago, so we skipped the lake and went to a drive-through zoo and to the Dixie Stampede in Branson. The Dixie Stampede is excellent. All of us really enjoyed it - it even kept Addie's attention the whole time. Megan's favorite horse was Maverick, of course, because he shares the same name as her little buddy.

Loving the Slides

One of Megan's favorite places to go lately is Pump It Up. They have preschool playtime on Wed and Fri mornings. We have gone a few times recently. Her favorite thing is the big slide. There was a smaller, water version of the slide at our neighborhood Labor Day party.

Megan sliding

Megan & Macy hiding in the obstacle course

Megan at the Pool Party

Trips to St. Louis Children's Hospital

We had two trips to St. Louis this summer to see Addison's doctor. It was determined from the nerve conduction studies that Addison has a nerve disorder (primarily affecting her legs and feet) in addition and apart from her diagnosis of Myotonic Muscular Dystrophy. She is very rarely seen in infants, so once again they cannot give us any type of prognosis. Therefore, THE SKY IS THE LIMIT! Once again, we are left knowing that only God knows Addison's full potential and we will work like crazy getting her stronger and pray like crazy that she will be able to stand and walk someday. On her 2nd appointment, Dr. Connolly prescribed for us to purchase a pediatric stander for Addie after conferencing with Addie's orthopedic regarding her displaced hip. Yes - her right hip is still displaced and will eventually require surgical correction when and if we determine if she will ever be able to stand and walk. There is no reason to undergo the surgery and months in a body cast if she will never walk. It is a major operation. The good thing is that the displaced hip doesn't cause her any pain. Both doctors agreed that this is the next critical phase of her rehab to determine if she will be able to bear weight on her legs and strengthen her muscles enough to stand and then learn to walk. We met with Addie's therapist and medical equipment representatives and found ONE pediatric stander that will fit her small size and serve all of her needs. (Most kids are not placed in a stander until they are toddler/preschool age.) Now we are trying to obtain authorization from the insurance company to purchase it. Of course, they are listed as an exclusion in the policy; therefore, we have to appeal and prove the medical necessity for it. In the interim, we were able to obtain a loaner that will serve the purpose of weight-bearing until we can purchase one. The loaner is pretty cute relatively speaking. It doesn't provide everything that she needs, but it is better than nothing. The actual one that we will buy is NOT friendly to the eyes, but I will have to get over that. "The point is to get her standing, Julie." I continue to tell myself.

Well, here are some pics of the wonderful facilities at St. Louis.

St. Louis Children's Hospital

Inside atrium of Children's.

On the far left is the hotel where we stay, which is connected with skyways to the hospital. The rounded building on the right is where we go for appointments with Addison's doctors. Skyways attach all of the medical complex (Wash Univ Medical School, Barnes-Jewish Hospital, Children's, Medical Offices, Hotels.....) It is huge, but easy to navigate and very nice facilities.

BEHIND THE SCENES WITH ADDIE:

Addie's hip brace that she still wear all night.

Addie reading books while in her stander.

When you see us out and about, you think that all looks normal. However behind the scenes we have a lot of work to do to try to get our sweet angel better.