The past month has been a whirlwind. I keep thinking things will slow down a bit and then the calendar completely fills up again! I am sure most moms can relate to this busy season of life! So let me quickly fill you in on the last little bit of life!
For Alex, he is doing really well all things considered. He has really good friends, is finding his footing living on his own and is adjusting to life without Zoey by his side. We all miss her so much, but it is definitely the hardest for him. He is doing well academically and is starting to gain some independence. He loves DBU and feels like he made the right choice in school for him.
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| Alex and one of the Psychology professors meeting for a mentoring assignment |
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| Alex and 2 of his Housemates at a Basketball game |
For my sweet Moo...her weeks are full with school, horses and dance. She has had a hard few months medically and is still struggling as we try to get more clarity on how best to help her. She has more heart and determination than anyone I know and continues to push through despite how bad she has been feeling. We both LOVE her teacher this year. She has been a really good fit and very willing to work with Maddy to help her succeed. She loves being at the barn and riding more than anything and is gaining in riding skills and confidence. She has one of her biggest shows coming up and will show independently for the first time (at a show outside our home barn)! This is a huge step and a testament to how far she has come in all areas! It is a big deal to send her into the show pen by herself, trusting that she has the skills to ride her horse exhibit control regardless of if there are any unforeseen circumstances. She knows she will likely be nervous but is excited to take this next step. As for medically...she is struggling with unrelenting fatigue and dizziness/lightheadness daily. She has also lost weight despite increasing her tube feeds. We have seen a number of our specialists and have some testing coming up to try and get a better idea of the cause and possible treatments. Our first testing is in early November where we will look further into adrenal insufficiency as that would explain all of her symptoms and would not be surprising consider Alex has it. At the time of that testing we will also do a bunch of labs to see if there is anything else we are missing. Early next year we will do a sleep study and see a special cardiologist in Houston that both kids used to see. He is very familiar with Mitochondrial Disease and the ways it affects the heart and also specializes in dysautonomia. We hope we can get her back to a more stable place so she can keep living her best life.
I have also continued to struggle with my help over the past few months. I was so hopeful that starting my new medication and having my gallbladder removed would have me feeling good as new again. Unfortunately, that hasn't been the case. I had an endoscopy that showed quite a few issues in my esophagus, stomach and small intestine. Those findings led me to have to stop one of my arthritis meds. My rheumatologist decided to increase my injections to weekly, unfortunately insurance has taken forever to get it approved and so I have been without medication for a bit. Luckily, I just got word today that everything is good to go so hopefully I will start feeling better soon. The GI I saw was less than helpful, so I got the name of a different GI from the kids doctor and hope to not have to wait too long for an appointment!
We flew to SC on September 30th and spent a week with family for PopPop's memorial service. It was a time of remembering sweet memories and doing some of the activities we loved to do together. There was lots of laughter and lots of tears. Mom is doing really well considering and figuring out what life looks like now that she is living alone.
I think that gets everything caught up! Thank you for keeping us in your prayers...for Alex to continue to do well at school and for Maddy and I to feel better.
Ali
