Wednesday, January 16, 2013

MDA Clinic

We had our second visit to the Muscular Dystrophy Association Clinic at Children's Hospital today.  Before MD became a daily reality for us, I had no clue what the MDA was all about.  Honestly, it used to just be a telethon that interrupted Saturday Night Live.  Now, we are so very thankful for the MDA and all that they do for families who live with Muscular Dystrophy!!  

While at the clinic, Lily is seen by several doctors including a rehab specialist, neurologist, and pulmonologist.  There is also a team of social workers, therapists, and a genetic counselor that follow Lily.  She is seen at the clinic every 6 months.  The MDA covers all the clinic costs and coordinates with outside sources for any equipment that the specialists determine that Lily needs.  It is such a relief to meet with doctors who are so familiar with Lily's MD.  Muscular Dystrophy is a scary disease, it's so nice to have a team in place that wants the best for our Lilybug.

Today's clinic visit went great!!  We had a long wait for a room this morning, but Lily managed to entertain herself.

She loved watching the fish!

She relaxed in the waiting room...LOL
She had a snack.
 She watched a movie on her Ipod.

We were so glad to see Dr. Davis, the rehab specialist...our girl was out of things to keep her quiet :)  Dr. Davis was pleased with how well Lily is doing.  He gave us some good suggestions to help out with some pressure sores that she has.  He and the physical therapist watched her go up and down the hall in her walker and couldn't get over how well she is doing.  They did notice that she tires easily and needs someone to push her walker.  They talked to us about getting Lily into a seating clinic and ready for a power chair.  It's a huge step for us, but we know Lily would benefit from the independence of a power chair.  Before we left, they set up an appointment for the clinic.  We'll start the process on February 8.  This is also the day that Lily will get her bike from Ambucs!!!  We are so excited.  Lily can't wait to get her bike!

Dr. Fequiere, Lily's neurologist, was excited to see how much stronger Lily has gotten since July.  He was one of the first doctors Lily saw when she came home and was the one who diagnosed her MD.  He and Lily have a sweet relationship and it's always great to see him.  He agreed that it was time for Lily to have a power chair.  He was sure to say that he didn't worry at all about her losing any of her current function once she has her chair, since she is such a "little spitfire".  

Lily & Dr. Fequiere
The pulmonologist had great news for us...Lily's lung function had improved a little since July!!!  We were in clinic today from 9:30-3:30 today, but that news was worth every minute of the long wait. 
 Pulmonary Function Testing

Lily's MD is progressive, we prepare ourselves to see a decline in her breathing, swallowing, and strength.  Hearing these specialist say that our baby is stronger is an answered prayer!  God gave us Lily to remind us just how good He is.  So thankful for our littlest miracle!!