Where do the weeks go?

How has it already been two weeks again?

Once Alex's show was over he had to deal with some medical tests. First up was an MRI of his pituitary gland. He handled it like a champ and the results were normal. A few days later he had an endoscopy. He has ulcerated spots that show a lot of inflammation, but they are not infected. We are using a medication to try and heal those spots. All else looks okay. Zoey continues to impress and her good behavior does not go unnoticed. She was even allowed to go back into the OR with Alex until he fell asleep for his endoscopy!

Ready for our MRI

Getting ready for Endoscopy

Afterwards

While Alex was getting checked out, Maddy had a week of Zoo camp. She had so much fun and they were great about making accommodations for her. She was assigned her own helper, napped everyday at lunchtime, and her helper gave her piggybacks whenever she needed!

Day 1

Day 2

Day 4

We also had a fundraising event for the hospital. No matter how many times we are asked to speak, I am always grateful for the opportunity for us to share with the community what their support means and how amazing cook Children's is. This specific event is great because the money raised goes to the facility dog program which is near and dear to our heart.

Dinner before speaking

Our best girls!

Speaking is more fun when your bff can come

Maddy and Nealy

Maddy and Natalie

Last Sunday we headed down to Houston to see Dr. Koenig and address some of the issues going on with Maddy. Our appointment was first thing Monday morning. For 12 years, Dr. Koenig has been the leader of our medical journey. For twelve years she has listened to me, cried with us, laughed with us, given us devestating news and given us hope. But mostly for twelve years she has loved my children and worked hard to ensure they are receiving the best care possible.  I'll start with Alex because he is easier(how's that for a change!)...He has been having some episodes where his vision goes black and then returns. We were concerned it was seizure activity. Dr. Koenig thinks it is related to his dysautonomia and told us just to keep an eye on it. Otherwise he is doping really well and she is happy with him! Maddy moo on the other hand has had a rough few months. Dr. Koenig is extremely concerned about her joints and particularly her knee that is dislocating multiple times a day. She is doing damage and as of yet we have not been able to get in with therapy due to insurance and wait times. Along with her joints, Maddy was diagnosed with fatty liver disease this summer which is likely related to her Mitochondrial Disease and is having increased GI symptoms. We are having to use more medications and and interventions due to pain and nausea and she has lost several pounds. Dr. Koenig ordered a number of labs including extensive genetic testing. She has also referred us to an endocrinologist due to some thyroid labs that have been off multiple times. Lastly, she ordered an EEG due to some staring episodes.

After returning home from Houston, we turned our attention to getting Maddy ready for school. We had Meet the Teacher and Assessments. Maddy was a little nervous, but had decided kindergarten is going to be great!

We always need love from Mrs. Mitchell

Maddy with her new teachers!

Ready for assessments

And of course there was therapy to make our week better. When Maddy gets on Rebel she lights up. She loves her horse, her therapist, and the volunteers who make this possible.

As we begin this week, I ask for prayers for Maddy. She is nervous. Pray for her to feel the love I know will surround her. Pray for comfort and confidence. Pray she is kind to everyone and receives kindness in return. Pray for the most amazing kindergarten year ever!

Ali

Alex is once again raising money for Cook Children's Hospital. If you would like to donate, please visit his fundraising page.