And the (some) results are in…..

Our weekend started out with a bang when our neuro-developmental doctor called to let us know Rylan’s first round of genetic testing results were in……….DRUMROLL…….the genetic disorders and/or strange chromosomes from round one came back negative! So this is a big sigh of relief for us, and one that totally threw me for a loop because I had already diagnosed him with about three or four disorders. Yes I did exactly what I am not suppose to do and goggled things like, “my son has a sub-mucous cleft palate what does this mean?? My son also has seizures what does that mean, oh and he is developmentally delayed with a weak immune system.”

Yes we have sat there for hours in the evening self diagnosing him after our doctors have gently then strictly  told us “no surfing the web, no reading things online…JUST WAIT FOR THE DOCTORS to diagnose. Mike is good at following these directions and being optimistic, I however like to be prepared for the worst and then hope for the best. But I mean really, who can do that?? Who really leaves the doctor after hearing something scary and doesn’t go to the internet for relief fully knowing it will only make the anxiety levels rise with every site you visit.

So back in October when the doctor gave us the option to do further testing and get a diagnosis on Rylan or forge ahead with therapy we can admit we wanted to forge ahead with the therapy so we could hold off on hearing an official name of what could be wrong with our sweet little boy. Being told a child has a problem is one that is not easy so we decided to hold off maybe for selfish reasons. God had a different plan and with the onset of other issues we had to move into the invasive testing. This is a good thing, we can now be more prepared in the future for what might happen and watch for possible things that could be very dangerous and possibly prevented.

So when the doctor called it was time for the moment of truth…..the first round of testing was complete and he has passed.  For the past several weeks we have had lots of uncertainty waiting for this phone call and I was sure we would get some answers but we are still without any and without any genetic disorders so far! More blood work will be taken when he goes in for his tubes so more testing is still to come.

Really Sucky Virus (RSV) has left 100% and Rylan had a great weekend, healthy and happy. As many of you know about this time of the year when you have a week or a weekend when everyone is healthy it is a true success, you can actually be grateful for the little things.

One major milestone I will share if you promise not to make fun of the of the producer/director of the video. This should really be only audio but I am not the least bit technical so ignore the video portion (of our drive to therapy) and just focus on the cute little voice of Ry….not to be confused with the loud obnoxious voice of the mother!  We have words from the little man. We have to record him talking because when we arrive to speech therapy he freezes up and is mute.  With his tubes surgery just 8 days away we are thinking he will be able to hear much better and start to talk.