Happy New Year's Eve, DIS friends! Just dropping in for a quick Dom update. Haven't been on the boards much over the last few months. Took a trip to WDW with my son, his wife, and their two little guys, Wesley & Lucas, as well as my daughter & her husband, from December 8th-16th. It was my 3 1/2 year old grandson's first trip, and the 5 1/2 year old's second trip, but was really like his first since he was only 16 months old on his first trip back in 2013. We had an amazing time staying in a 2 Bedroom at AKL Kidani Village. The only downside, and it was minor, was that it was pretty cold, so no swimming for the little guys at the awesome water play area that Kidani has for kids. It really was a magical trip! Planning on taking my other son & his sig other, and their two kiddos, Jaxon & Gavin, who will be almost 13 & 6 at the time of the trip, this upcoming November or December 2018. Jax & Gavin were also on the 2013 trip, but Gavin was only 9 months old at the time, so this upcoming trip will also be like his first. Gavin tells me almost every time I see him that he wants Mom Mom to take him to Disney World! Will be deciding on a definite date today!
Dom had his Ambien trial a few weeks ago. It had been postponed until January, but the neurologist's office had a last minute opening, so Patty, Dom's mom, jumped at the chance. We haven't seen much difference in Dom since the Ambien, and he does now get a low dose of it daily, but we're still praying for a miracle. His mom, as well as his caregivers who see him on a daily basis, seem to think he's a little more responsive than usual. The only thing I saw that may be a little different is that he is tracking with his eyes a little more than usual, and laughing as well as appearing to cry at times a little more frequently. You would think the laughing & crying are signs of cognitive function, but you can do these things in a vegetative state. Health wise, he's doing pretty good, which is pretty much all due to his mom's diligence.
I was doing more research the other night when I couldn't sleep, looking for any hopeful info on anoxic encephalopathy, especially when the affected person has been in a basically vegetative state as long as Dom has been. His two year anniversary is coming up in March. The news is pretty bleak. From what I've read, about 50% of affected patients die within six months of the brain injury, and at the 2-5 year mark, only 25% are still alive. They usually die from external causes like pneumonia or a urinary tract infection. The statistics for any kind of meaningful conscious state recovery at this point in time is about 3%, and those who do recover some consciousness are still severely disabled. Consciousness means doing something purposeful on a regular basis, such as holding a comb and trying to use it, moving an arm or leg when asked to do so, etc. Dom doesn't do anything at all like this. He does move his arms or legs at times, but it is in a reflexive way, not purposeful, and even that is minimal.
Dom is still receiving Botox for his contractions, still has his Baclofen pump which is refilled every 3-4 months, and is also for contractions & muscle spasms, is now getting the daily Ambien in the hopes it will have the opposite effect of what it's generally used for and spark some purposeful responsiveness, is still being fed through a G-tube in his belly, and is obviously incontinent. He continues to take anti-seizure meds, and it appears he hasn't had a seizure in a long time, thankfully. By some kind of miracle, Dom is still on a subacute unit at his facility, receiving physical & occupational therapy almost daily. The purpose of the therapy is to keep his limbs in as much of a natural state as possible, and the therapy along with his braces & meds, is doing a great job. The more his body can be in a natural position, the better off physically he will be. Those who have been following Dom's story know we've been waiting for the Fair Hearing to see if a judge is going to order Dom's insurance company to keep paying for subacute care. The hearing has been postponed time and time again for almost a year now, I think due to Dom's lawyer advocate. Being directed to this lawyer, who took Dom's case, was a miracle in itself. He works tirelessly for Dom. I know it's because he's been receiving subacute care as opposed to long term care that his physical health has been so good, and of course, due to his mom being on top of everything. This woman is an angel! Almost two years later and she is still as determined & full of hope as ever! You would think this would be a natural reaction of any parent, but I know for a fact it's not.
We're hoping and praying that Dom will show enough awareness in time that we can take him on a Disney trip after Star Wars Land opens at HS, as he was so excited for it when it was first announced. It would truly be a miracle if he becomes one of those 3%. We all try to stay positive, but you can't help the negative thoughts that creep in, such as would Dom want to live this way. I don't think anyone would want to live like this, as it's not living, it's just existing. Wish I knew the reasons as to why things happen, and what the purpose of Dom being here is, but I don't. Just have to keep keeping the faith.
Dom- December 23, 2017
Walt Disney World trip December 8-16, 2017
My son, Mike, daughter-in-law, Steph, son-in-law, Patrick, daughter, Lauren, me, my husband, Harry, and in front, left to right, our grandsons Wesley & Lucas!
Edited to add, it's been decided we're going to take these two cuties, our grandsons Jaxon & Gavin, to WDW January 2019 for their birthdays, rather than November or December 2018! Jaxon will be 13 on January 18th, 2019, and Gavin will be 6 on January 21st, 2019!