Many people have been asking how Dax is doing. I know it has been a while since I have updated but it has been quite chaotic, and I have been waiting until we had all of his follow up appts. It's crazy it has been three months since his accident, and we continue to thank God every day that he is still he with us.

A couple weeks ago we had his follow up appt with ENT and Audiology. They tested his ears again and nothing has improved. He still has no measurable hearing in his right ear. We talked about our options that included some amplifier devices or a cochlear. They ordered a scan of his ear in his upcoming MRI that would check to see if the cochlear nerve was still intact if we were to want to go that route. At this time he seems to be managing ok with just his left ear that is still working 100% so we are just going to see how that goes for now. 

We just got done spending the majority of the week in Rochester for many other follow up appts. 

On Tuesday we met with:

Ortho: He started the day with X-rays of his pelvis and left leg. We then met with the Dr and reviewed the scans. His leg and pelvis looked great and healed very good! He has muscle loss in his left leg which was to be expected. He has been walking without his boot now for about three weeks. We had to pretty much force him out of it as it became quite a comfort thing for him. He felt like he was trapped and couldn’t move around without it. He has been walking around with and without his walker but is still very wobbly and his balance is very off. Ortho stated with the injuries he has they usually only see a limp when starting to walk again so his balance issues are more neuro and part of his ataxia. They are uncertain how much his balance he will regain — so it’s just a waiting game and hoping lots of therapy will help improve it. 

Neuro Surgery Team: After X-rays he had his MRI. He was very nervous about this. As we were waiting in the waiting room for his name to be called he kept trying to run away. As soon as they called his name he threw himself to the floor and I had to carry him back to the prep room. We got him and myself into a gown and calmed down some until he found out he needed an IV for contrast. He started screaming and crying hysterically and it took a few of us to hold him to get the IV placed. We then went back to the imaging room and it took about half hour of talking and walking him through what was going to happen. He still wasn’t having it. I had to force him to lay down and I had to lay on the bed and go into the machine with him. Once in there he managed pretty well! We reviewed the scans with Neurosurgery and found that the blood clot has shrunk quite a bit but is still there. He has to remain on the baby aspirin and have a repeat MRI in three months. She stated that the skull fractures are healing well but are not completely there yet. He still has bruising and inflammation that is not completely gone. He needs to be very careful to not hit his head as it would still be very dangerous for him for at least the next three months. She also agreed that his walking is more ataxia — which is a coordination and balance issue due to the TBI. She also wants him to follow up with Neurology so put in a referral for that. She showed us the areas of the brain where you could see the cells that were damaged dying off. She stated that he is young and is hopeful he will be able to make new signals to offset the ones that died. 

Physical Medicine and Rehab team: We met with them on Wednesday, and this was a very good visit as she was able to give me more direction on his limitations. She looked him over and checked his refluxes, walking, strength and took in our input with how things have been going. She stated that he looks great but still has a lot of healing to do!  She stated that his agitation and outbursts that we see are more than likely his way of telling us they he needs a mental break, or the situation is too much for him. We talked about school and how we were trialing going back for a couple hours a day this past week. She didn’t recommend going any longer than the 2-3 hours a day at this time when he is still getting so many other therapies, as it will be to exhausting for him and rest is of upmost importance as well. She put in a referral for a Neuro Psych eval to evaluate where he is at cognitive wise. He has also been struggling with some image issues. I felt so bad when he told me he wished he was still in a coma so that people wouldn’t stare at him. She thinks it would also be good for him to talk with a psychologist, so she put a referral in for that as well. We will follow up with her again in 3 months. 

We then met with the facial nerve doctor. Earlier in the day he got to be a little model and they took many pictures and videos of his paralysis to track it. The facial nerve doctor said he hasn’t seen much improvement since discharge. The plan for now is to give it another 3 months and then go back to see him. If we see the slightest bit of improvement, we will let the nerve be and continue to repair itself along with starting facial therapy in Rochester. If it does not make any improvement, he then said we need to talk about surgical intervention. He said if we let it sit much longer after the 6 six-month marks with no improvement then we risk the chance of it completely dying and no movement on that side beyond repair. There would be two options for surgery. One being a nerve transfer where he would take nerve from his chewing muscle or the tongue muscle and plug it into the nerves on that side to help it work better. The other option would be a cross face nerve graft which is taking nerve from his leg and plugging it into the good side of his face and tunneling it over to the problem side to help the muscles work better. Option two would leave part of his leg with no feeling indefinitely. So, we are praying in the next three months we will start to see a little bit of improvement. He said we could start the facial therapy now – but it’s not guaranteed that will make it move along any faster. He is hopeful with his young age, so we are holding onto that hope as well.

Today we made the trip back to Rochester to meet with the eye specialists. He had an eye test, dilation and then we met with the eye doctor. He found that his right eye is starting to get scar tissue on its cornea due to it not producing tears and being able to fully close. He also noticed that his oil glands in both eyes are clogged. We have noticed when Daxton is looking at something that being the tv, device, person etc he always has his head turned to the side slightly. He found that the alignment of his eyes is off. He said this is because he is guessing that since his occipital nerve 7 was damaged, he is guessing occipital nerve 6 being so close also was which is what controls the alignment of his eyes. He said he noticed it the most when he looked off to the side, so he thinks that it is starting to heal itself. He said his eye condition is very serious and we need to be extra aggressive with his eye treatments. He wants to be ahead of the ball in case this starts to worsen so he put in a referral to an eyelid specialist to talk about eyelid surgery to protect his eye. Another option would be to wear a special contact that would pretty much put his eye in a bath all day to eliminate having to administer eye drops every hour. He put in a referral to meet with a specialist on this as well to see if Dax would tolerate wearing this. We will continue with the aggressive treatments and see him again in two months to make sure that it is not worsening.

That is all we have for medical updates at this time.

Dax will continue to attend school for a couple hours a day as he tolerates and therapy three times a week for Speech, OT, and PT.  He gets to do aquatic OT therapy every two weeks which he is really looking forward to.

Thank you all again for your continued prayers, support, cards, and love shown to our family as we continue to navigate this long road of recovery.