Update on Appointments

 I wanted to get out a quick update on our trip to Houston! Not too much has been going on otherwise. The usual school and horseback riding. We did have one of our favorite events Dance marathon at TCU. 

It has been two years since we have traveled to Houston for appointments. (We have been having virtual appts every 6 months). It was good to see doctors we have known for so many years and who truly understand this disease like no others, but I forgot how hard and exhausting these trips are. We left home early Monday morning in order to arrive for a 2:00 appointment with Dr. Pacheco our immunologist. Dr. Pacheco is a true God send. She loves my children and truly cares about them beyond their medical issues. She wants to know what they are doing and hear about their hobbies and friends. My kids call her their Puerto Rican Mother and know she would do anything for them. She is a doctor I can call or text day or night and know she will be there. From an immune standpoint the kids are doing well. She is hoping that their immune replacement infusion has some protection for Covid at this point so she is going to check antibodies on them. Other wise things are status quo!

Lunch stop!

Our beloved Dr. Pacheco

Ready to explore the mall!

After leaving the hospital we checked into our hotel in the mall which is the kids favorite place to stay! We headed downstairs to look at some shops and eat some junk food and decompress! We all crashed super early Monday night! Tuesday we had to be out of the hotel by 6:45 to make our first appointment. This appointment was with Dr. Koenig, our Mito specialist. She has been with us for 14 years now since she diagnosed Alex at 3! She is the one who knows the ins and outs of mitochondrial disease and all the havoc it wreaks on these kids bodies! She is thrilled with how well Alex has been doing and doesn't want to change anything. Alex did spend some time speaking with Dr. Ka nd the social worker about transition and becoming more independent in care. Dr. K is concerned with the number and severity of headaches that Maddy is having. She is glad we have a brain MRI scheduled.(It was supposed to be last week and was cancelled due to the ice) In the meantime she is in agreement with everyone else that we need to get more fluids into her. This has been an ongoing struggle because she gets extremely nauseous when she tries to drink more or if I use her tube. We are hoping our GI can help us tackle this. She noted Maddy is still quite weak for her age and wants her to continue all her activities to continue to try and gain more muscle.

Starting the morning in prayer

Dr. Koenig and the kids

Mad praying again!

Lakeesha(Dr. K's nurse for the past 14 yrs) with the kids. 

After finishing with Dr. K we had to kill a little time before our last appointment for Maddy with a rheumatologist to make sure we aren't missing anything related to her joint issues or any other way to help her. Dr. Khamdar is such an incredible doctor and took a lot of time examining Maddy. The good news is that he doesn't feel like their is an autoimmune process going on. The unfortunate news is that despite daily complaints of knee and ankle pain there really isn't anything we can do to help her. But as maddy told me, "My knees and ankles hurt really bad, but I'm not going to cry. I'm just going to keep doing what I like to do". I wish there was more to help, but am so thankful for her bravery and toughness! We finally finished at 2:00 and started the long drive home. 

Twosday!

Maddy and Tori chatting during their cool down lap!

Maddy and her Blue!

"Future Me" day at school!

Thank you for everyone who prayed for safe travel and for us to have good appointments. We are so grateful for each one of you!

Ali