What a crazy few weeks! Mimi and PopPop flew in on March 2nd for a visit. We always love having our family around. Mimi and Alex both had appointments with Dr. Koenig on March 6th so after one day of relaxation we headed to Houston. Using Hotwire, we were lucky to be staying in a beautiful hotel. Unfortunately, I started not feeling well the day before we left. I really pushed myself to try and keep going so we could enjoy our trip, but I felt pretty bad the whole time. On Monday we spent the morning at the hospital and then had a quiet aftenoon at the hotel. Tuesday we had our apointments. We just saw Dr. Koenig in January and February so there wasn't too much to discuss. Our main concern from a neurological standpoint right now is that Alex is having increased neuropathy and we haven't looked at his syrinx in over a year. We have been trying to avoid putting Alex under anesthesia for elective procedures as he always struggles and it sets us back. However, we cannot wait any longer. If the syrinx expands it can do damage to the spinal cord. So we will be scheduling that shortly. We also discussed a possible 24 hour VEEG, but decided against it right now. Alex has been having some "tremors" at night which we thought might be an increase in seizures. After talking to both Alex and I, Dr. K is hopeful it is just sleep myoclonus so we will just wait and watch for now. I think that was mostly it. I was also able to quickly check in with GI about a few concerns, mainly that we have not been able to increase Alex's feeds anymore and also his extreme bloating is back after stopping the antibiotics we were on. We are still discussing our options.
Once we left the clinic, we headed to Kemah Boardwalk for an afternoon of fun. Alex loved the rides, especially the drop zone. It was hysterical watching him. He kept getting off and insisting he needed to get back in line (there was no one there) and running back around the ride to the entrance. Then he would scream and giggle the entire ride before doing it all again!
After one more night in Houston, we headed home on Wednesday. PopPop and Bruce did some much needed work on the house. It was so nice for Bruce to have someone who knows what they are doing to help him. PopPop definitely earned his keep!!!! Hopefully, I'll have pictures for next update! Thursday we took Alex to see a movie. It is so awesome to go to a matinee during the week because it is always empty! Friday we headed to Great Wolf to let Alex play some MagiQuest. We were so sad to see Mimi and PopPop go yesterday. We always wish we had more time to enjoy our family. Unfortunately, by yesterday morning Alex had a nasty wet cough and a low grade temp. It was up to 101 by midday and I had to decide whether to head to the hospital or not. I decided to give a dose of tylenol (which we normally don't use bc of Alex's liver disease) and so far his temp has stayed in the 100's. He doesn't feel great, but is holding his own. I am so happy we have managed to survive the weekend without having to head to the hospital. I will have to take him to the pediatrician tomorrow as I am sure he has what I do and I needed antibiotics.
We are hoping for a quiet few weeks before we need to head to Houston the first two weeks on April. Hopefully, things will settle down and give us those few weeks of quiet we so desperately need.