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In support of
Mack Hofacker
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Mack Hofacker
- First I want to highlight the two raffles that were held for us by dear friends of mine! Kennedy at Canal life ( a local non profit) held a raffle at the Canal Life Christmas Market. I was in attendance selling tickets and was able to talk to so many people about Mack, face to face. Luisa's Natural Goods here in canal Fulton also held an event and raffled off so many beautiful baskets! The donations and proceeds from these two raffles cover repairs to our van before we drive it to Texas and the gas to get there and back! Huge thank you to Kennedy and Adrianna for their support and advocacy for Mack.
- Secondly, We decided to switch treatment centers from NeuroSolutions to Lucas Brain Rehab which is also in Austin (www.lucasbrainrehab.com) Dr. Melissa Lucas has been so personable, kind and supportive as we were trying to decide in the beginning on where to take Mack. The decision to switch happened early Sunday morning (1:00 am). As I was doing my routine insomnia research and thinking, I was taking into consideration the one on one approach that Dr. Lucas offers and thinking back on the interactions I had with her and it was clear that she is the better option. Her treatments are the same as what the other facility offers but she will be the only one performing his treatments, instead of a team of multiple people. She also offers a 1 week intensive for almost half the price so another intensive down the road will be more plausible for us. This change only sets us back one week, and we were able to keep the Airbnb reservation that we have paid for, just needed to adjust the date. Everything fell into place seamlessly and I'm glad I followed the urge to make this change.
- We are starting Mack on Haleigh's Hope again! We feel that we lost the small bit of control we had when we stopped the over the counter CBD oil so we will begin purchasing it again. We will use these funds for that like we were before. If you would like to sponsor a bottle of Haleigh's hope you can do so by donating $75 and mentioning CBD or Haleigh's hope in the comment with the donation!
- There is some suspicion of enlarged adenoids/ tonsils for Mack right now. This could explain the snoring sound we hear when he breaths, the mouth breathing and prolonged sickness (new for him). We see ENT on 12/31/25 to hopefully figure that out. If they are enlarged this could heavily contribute to his apnea, oxygen requirement and swallowing issues. Surgery may be worth it and this could greatly improve all of the major issues affecting him (other than seizures). Enlarged tonsils and adenoids run on my side of the family AND is very common for people with 18p- which is one of Mack's genetic conditions. Mack's pulmonologist and cleft surgeon say there is nothing physical to blame his apnea, oxygen dependance or swallowing issues on thus far so I need this ruled out before I can confidently say that I agree with that. In an 18p- Facebook support group I asked the parents "How many of your children had one or all of these 3 issues AND had these issues resolved after removing tonsils, adenoids or both?" and there are 30+ comments affirming my point! hopefully this is enough for ENT to be thorough and take my concerns seriously, instead of just stopping at his seizure diagnosis.
- In speech therapy we have officially started eating purees off of a spoon!! We are working on doing so in his favorite chair. We will work on this now - January and in Feb (if he is over his sickness) we will book another FEES test to see how his swallow function has improved! Mack graduated from training his sucking skills because he has it down. Even though he can physically suck because of his cleft there are certain movements all of us have to establish with our tongue to be able to eat anything safely and he has all of them mastered.
Thank you for reading our update!! Follow our support registry to be notified in the future if you haven't done so already. We love you all!
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