Believe it or not Gavin made a trip to clinic to see Dr. R! This is probably only are second or third time ever going to clinic as we are always inpatient and never really have follow ups. Kinda weird but it was so nice to be able to talk about issues without being in immediate crisis. I felt like I actually could express what was on my mind because I wasn't in my typical I haven't slept in 48 hours frame of mind!
The biggest issue and most hard to swallow was the concern that Gavin is having some type of seizures. We have had this concern since birth as we has always has strange episodes that had us concerned, but Gavin has so many issues that it's not hard to attribute his weird behavior to one of his sick body systems. Lately Gavin has been having scary episodes of eye crossing along with strange arm tension. Most likely he will be getting a repeat EEG and possibly and traveling EEG as well. Seizures are very common with Mitochondrial Cytopathy so I guess we all kinda expected it as some point -- but that doesn't make is less shocking.
We talked about the activities Gavin is involved in including all his class at the YMCA, and he reminded me that allowing Gavin to experience life despite his fragile state is totally ok. He told me of a new study that shows despite the exercise intolerance seen in Mito patient, exercise might actually lengthen their life. He told me about a study with rats where they divided them up and genetically altered them to have a particular Mitochondrial deletion. Half the rats they made live in a box where the floor was a treadmill -- so they were forced to keep moving all day long despite their fatigue. The study showed that the group of rats that were forced to exercise lengthened their lifespan by 40%. Kinda interesting considering when we see Gavin become fatigued we see his body shut down -- but never the less it is interesting. Cruel to the rats (please don't leave mean comments - I didn't do the study) but interesting.
Of course we also talked about Madison and the struggles she has with having a seriously ill sibling. We talked about trying to find a therapist for her as well as figuring out what we will do next year when she is school age. The thought of trying to juggle school and Gavin's hospitalizations makes me sick -- I'm waiting until next year to start stressing about that one.
The last thing we discussed with Gavin's suppressed immune system. Although Dr. R is fine with Gavin being in open spaces at the YMCA with other children he gave us the big NO on taking him to Kid's Church, which I totally understand. The space is just to small and the infection risk is way too high. Last week was Gavi's first week in his Sunday School class -- I guess it was his only week -- at least we gave it a try! We are going to start giving Gavin more frequent IVIG infusions and attempt to keep his levels high, in an effort to help him with infection. We will start checking levels every week along with all his other weekly labs.
Enough info? I certainly think so. Today we are off to the pool for some relaxation.