Neurology Appt. & MRI

Went in Monday to see a neurologist at BAMC. We discussed neuro psych testing to get an idea what his positives and weaknesses are in the educational arena. This type of testing should be a bit more thorough than what the school can provide. I also discussed his aptitude with his teacher and she believes Ethan is very smart and skilled but obviously has some physical limitations along with a delay in response. The delay in response is due to the Posterior Fossa Syndrome.

We also discussed the facial paralysis. Most likely it involves the 5th, 6th, & 7th cranial nerves with some impairment in all but no complete loss of function in any one. This doctor believes radiation was likely the primary cause. However, we've asked just about every doctor and not one can be certain and many have said it was from surgery, CSF pressure, radiation, an infection, a combination, etc. We will probably never know the true and exact cause. Based on my research and doctor input, we're not sure a whole lot can be done at this point to regain what has been lost but we're still hopeful. We continue to do facial exercises and are going to start electrical stimulation soon. Also, we have an appointment lined up with a plastic surgeon just to get an idea what options are out there, if any. To me, this is more or less so we have an understanding of what types of treatment are available now versus what will become available over the years.

On Thursday, we went in for his MRI. They scan the brain and spine just looking for ANYTHING. So far so good!!! He'll continue to get MRIs, blood tests, etc. probably for the rest of his life! Obviously, these will become less frequent as time goes on, but possible late effects will be closely monitored forever!

He is now eating on his own 100%!!! We're very excited about that. Some days he doesn't eat enough or drink enough, but typically that is just one out of five, so we believe all will be on par very soon. He drinks his nutritional shakes by mouth now, so that helps to keep the weight on till his stomach is used to taking in a regular diet. We will be removing the g-tube soon enough! Also, we have the option of removing his port in a month or so too, but we may opt to keep it in due to the fact they will still be drawing blood so often. We'll be discussing it with Ethan to decide.

So all is well.

Next Saturday, we will be doing the CureSearch walk with Ethan's nurse, Nicole Molett. Here is a link if you'd like to support a good cause: http://www.curesearchwalk.org/faf/search/searchTeamPart.asp?ievent=481284&lis=1&kntae481284=931E60D8679C4128A63A05501AA27CF9&team=4863534


Did you know "For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents?"

Thanks for all your support, love, prayers, positive thinking and energy. Love to all!

Eye surgery today - hummelshiem

Went pretty well. It was delayed and then longer than we thought it was going to be but the docs said he handled it like a champ. He's a pro at this surgery thing. His doctor, Valentin, said they looked perfectly aligned and there is a 95% chance they will stay that way. We'll know for sure in about eight weeks. So all is well. We're all very exhausted and happy to be relaxing at home now. Thanks for all the prayers. You can see a post surgery pic on Facebook.

Love to all.