Trip to Houston

We left Sunday to drive to Houston for 4 appointments for Alex and 3 for Maddy. Overall the appointments went well, but it is always exhausting to cram so many appointments in such a short time. The appointments coupled with the travel leaves us all feeling like we've been run over by a truck by the time we make it home!

Monday morning Alex saw our pulmonologist and sleep doctor. Alex's last sleep study showed some apneas so we discussed our plan going forward. We are going to hold off on removing his tonsils and adenoids because no one wants to put him through surgery right now. He already has a bipap machine. We are adding a medication for allergy/asthma issues that hopefully will help.  We ran some labs looking for a cause for Restless leg Syndrome/Periodic limb Movement Disorder. We also did some pulmonary testing both standing up and laying down to see how much his abdominal distention is affecting his breathing while laying down.

Monday afternoon both kids saw our immunologist, who is one of our very favorite doctors. She didn't want to change much as far as Alex is concerned. She only wanted to remove a medication that can be dangerous with an immune deficiency.  We talked quite a bit about Maddy and the many infections she has had over the past 6 months. She ran a bunch of labs and we will determine our next steps based on the results of those labs. She also started Maddy on an allergy medication to help with her environmental allergies.

Tuesday we saw Dr. Koenig our Mitochondrial Disease Doctor/Neurologist. Overall she is happy with the progress Maddy has made developmentally. Her tone is still not great and her gait is still not normal, but compared to a few years ago she has come so far. She wants us to continue our therapy and is thrilled she is taking dance. She also wanted a bunch of labs on Maddy Moo. She had made some medication changes last visit with Alex (increased his seizure medication) and was happy to know we have seen improvement. We spent quite a bit of the appointment discussing his GI system and decline and whether doing surgery is the right choice for Alex. Dr. Koenig, Alex and I have been through SO much together and there is a high level of respect and trust all around. Alex and I wanted her opinion on our options. She did a great job talking to Alex and reassuring him that his voice counts!

Our last appointment on Wednesday was with Cardiology. For Alex, no changes. His device that closed his hole looks great and there is no sign of infection from April. Maddy still has a hole that is shunting blood. We will follow-up next year and if the hole is still there move forward with closing it.

As hard as this trip is several times a year it is so good to be with doctors who are so familiar with Mito and see patients like my kiddos day in and day out. I am SO grateful to our awesome nurse, Erin who traveled with us and spent 4 days as a part of our circus with no breaks and no complaints. We are lucky that we can all laugh and enjoy each others company to lighten up the hard times.

Thank you to everyone who prayed for us. We are happy to be home and enjoying a few quiet days before jumping back into our crazy schedule next week.

Ali