Thursday, June 20, 2013


Today marks the official beginning of summer for us!  I know the actual season doesn't begin until tomorrow or the next day, but it's summer in this house full of teachers!  We celebrated tonight by grilling steaks and eating dinner in the living room so we could watch a movie and stay up a little later than usual.  Dani has figured out with my part time schedule, she can ask me at night before bath and bed, "Are you working tomorrow?" and if I say yes, she resigns to her regular bathtime schedule.  But if I say no, she says, "Can I just take a shower with you in the morning?"  So we have around 2 months of easy nights and showers in the morning.

Ryan had some visitors from the local school district today.  The deaf/hard of hearing teacher and district coordinator came by to meet him and see if they could provide any services for him.  We are really lucky to live in a district that has these services available.  I really like that she is pro-ASL and will incorporate sign language into her sessions if the parents request it.  We talked about where we are in the process for CIs for Ryan, and they were really glad that we are going to try out the hearing aids first.  It's hard to have any hope for them helping him since he is profoundly deaf in both ears, but if there's a chance they can work, you definitely want to know that before you pursue cochlear implants.  We also discussed the neurological portion of it, and they basically said we are doing everything right by seeking the opinion of a neurologist while still moving forward with all of his hearing issues.  It's really unsettling for me not to know what's going on.  I know we may never know what CAUSED his hearing loss specifically if it is sensorineural, and I'm fine with that.  I just want to be sure it IS sensorineural and not auditory neuropathy. 

I actually called the neurologist last week to get us on a list to be seen sooner if there's a cancellation.  Otherwise, we will be visiting her on July 9th.  After a well-visit a week ago where our pediatrician gave me a copy of the MRI report of his brain, I spent a lot of time googling words like brachycephaly (this one just means he has a flat head.  Wish they could've just written that!), ventriculomegaly (this is excess fluid in the ventricles, which the ENT had told me over the phone, and which we already know about because it corresponds with his mild hydrocephalus), thinning of the corpus callosum (not good, do not google), and hypomyelination (also not good, again, do not google).  Now you can see why I am a bit anxious for his neurology appointment.  Obviously I have lots of questions.  More prayers in this direction would be greatly appreciated.

Despite all of these new and slightly terrifying findings, Ryan has been interacting with us more and more!  He is finally starting to look at our faces, he's smiling more readily and laughing heartily.  He's getting better at holding his weight up and not arching every second.  He reaches his arms and legs out excitedly when he knows he's about to get picked up, and when I pick him up and lift him to my shoulder, he reaches both arms around my neck and squeezes me.  He will then trace down my arms until he grabs hold of my elbows and then he'll just hold tight for a while.  It's the sweetest thing. 

Tomorrow he has an echo to check his heart for pulmonary hypertension, and then we'll have a visit with his cardiologist and pulmonologist on Monday to go over everything.  At our last appointment, they had mentioned possibly starting to wean him of oxygen by this appointment.  I'm not quite sure he's ready yet because he still drops his sats if he gets his cannula prongs worked out of his nose while he's sleeping.  They typically don't go lower than 89/90, but it's still low enough to show he needs that extra support still.  Hopefully the echo will at least show that his pulmonary hypertension is improving if not resolved, and we can wean down on some of his meds.  Any other great news on top of that would just be icing on the cake, but of course we'll take it! 

Thank you for continuing to keep Ryan in your prayers.  His constant drive to fight is such a blessing and I know all of your prayers are holding him up and pushing him to improve.
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