When I asked Michael what I should or shouldn't write about in this update, his response to me was something along the lines of "We don't need to pretend everything is ok because it's not. Life is hard right now."
Some people assume that no news is good news, but unfortunately that is not the case with Ryan. I don't even log his seizures anymore since he has them so often. 2-3 seizures a day is pretty normal. And lately at least one a day has been lasting anywhere from 10-20 minutes. Most of the time they are head dropping seizures that occur in clusters, but the other night he had another grand mal that followed the head dropping which resulted in me using the emergency drug for the first time. I never thought I would have to use it, but I'm glad it worked- almost immediately. It didn't stop the seizure completely until a few minutes after I gave it to him, but it did put him to sleep pretty quickly.
We found out back in December that Ryan is missing part of a Chromosome. If you don't know much about Chromosomes, we have 46 total. 1 from each parent makes 23 pairs. On Ryan's 18th pair, Doctors discovered that part of it was missing or deleted. The 18th Chromosome apparently deals with development, which is why doctors have told us that Ryan may never meet major milestones such as walking or talking (worst case scenario). The neurogenetic specialist told us at the last visit that although Ryan's opthamalogy appt. came back normal, she thinks his vision is like that of a newborn. He can only see certain colors at a certain distance away. She told us that Ryan needs physical therapy (which he now attends twice a week), occupational therapy, and visual therapy. You can imagine how overwhelming this must be as his twice a week therapy already is adding a lot to our schedule. So while I said the appointment went well (discussions and all), it was still very stressful.
Anyway, after we found out about the chromosome the doctors decided to test Ryan for an awful, rare, genetic disease. This Friday (in less than 48 hours)!, we will find out the results of that first genetic test. If it comes back positive, which they are almost 99% it will, then they will explain what it means etc... If it comes back negative (which I am hoping with all my heart it does) then they will tell us the next test that needs to be done.
SO the big question everyone seems to want to know is: how am I (or how are we) doing with all this? Well I told Michael the other day he can start looking for a new wife because I am gonna die an early death from all this stress. I keep being told that I am strong, but I don't feel that way. Seriously, I can be driving along fine on the way to work, and then totally lose it. It has put a lot of strain on our marriage at times, but has also brought us closer together in ways we never thought possible. We have had to lean on God when our Faith has been weak or tested. But overall, I think we are doing ok. Not good, not bad, just ok.
So as I wrap up this last update, I am asking you with all my heart to please pray for our family this Friday. Please pray for NEGATIVE test results. & Please pass the word along to anyone you know who will take a moment to pray for us. Most of you will never have to experience what we are going through right now, but please know that your prayers are helping us get through one day at a time.
As always, thank you from the bottom of our hearts.
Love Rach & Mike