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.