Update on Maddy

I am not sure how the summer is flying by so quickly! The last two weeks have been a mix of some really fun times and a lot of medical appointments!

My Dad arrived on July 1st and was here for the week. We made it to the pool a few times and just enjoyed the week spending time together.

Before Dad arrived on the first, Maddy had an evaluation for Hippotherapy (Physical therapy while horseback riding). She was so excited to go. But was SO sad when she didn't get to ride that day. But she did get to meet the horse she would be riding.

Maddy feeding Rebel applesauce

Alex's home health nurse had her baby while we were away (on Alex's birthday!). On Tuesday, she came for a visit so we could get some baby snuggles.

Here are a few pictures from our time at the pool:

This past Wednesday Maddy had her first day of hippotherapy. She LOVED every minute. It is all she has talked about and she can't wait to go back on Wednesday. They even talked to her about doing a horse show next year!

Where are we medically...Alex is doing pretty well overall. Maddy is the one keeping me on my toes this summer. We continue to talk to multiple doctors, nurses and dieticians as we try and formulate a plan that keeps Maddy eating orally and growing while protecting her liver and not causing increased stomach pain and nausea. It has not been an easy plan to come up with and we continue to discuss all of our options. 

In the meantime, we were scheduled to see a physiatrist that the NIH referred us to. When they originally called to schedule they were looking at November! About ten days ago Maddy's left knee started dislocating every time she straightens her leg. After letting our pediatrician and NIH doctor this, they were able to move our appointment up til Thursday. We absolutely LOVED the new doctor. He was very compassionate and very thorough. He is concerned about her knee as well as her thumb which is also very unstable and likely to cause increasing problems with school. We came away with referrals for a knee brace, PT for strengthening exercises, OT for her thumb, and a seating clinic to look at a wheelchair for when we are walking long distances, like the zoo or six flags. (She is currently still taking her baby stroller) We will follow up with the doctor in six months or sooner if we have any new issues. 

Friday both kids saw the hematologist where we got good reports! 

Yesterday Alex and I took a trip to see Zoey's trainer. Zoey has been doing phenomenal, but we had two little quirky things that we knew could be better. Bev graciously asked us to come back so she could help us fix it. We spent a few hours and Zoey and Alex did great correcting that behavior. We continue to be so appreciative of Bev and All Purpose Canines for their dedication and hard work.

This next couple weeks is an exciting time for both kids. Tomorrow Alex starts his Summer theater Workshop and Maddy starts ballet camp.

I ask that you continue to pray for Maddy as we sort out all that is going on with her. I also ask for prayers that Alex continues to feel good and stays healthy through his shows.

Ali

Alex has once again set his sites on being a top fundraiser for Cook Children's hospital through Extra Life. If you would like to help him reach his goals and touch the lives of many families, you can see his fundraiser here: Alex's Extra life Page