Thursday, February 7, 2013

This week's update.

It's Thursday again, finally getting some time to update the week!  First of all, some HUGE news.  Ryan rolled over from his tummy to his back for the first time last Friday!  He did it 3 times in a row, and I was able to get the phone out in time to video the last one. :)  We were all so excited!  He hasn't done it since then, but hey, it was great progress and he is definitely getting stronger each day.  Today we had PT and FT at CHOC, and he did great.  Well actually, he slept through the PT again, but he did great with feeding therapy!  I brought some of the squash and his bottle, and he definitely liked eating off the spoon better than trying the bottle.  And by "eating" off the spoon, I mean that she would dab some squash on his hand and then his cheek to get him used to it, then use the back of the spoon to wipe a little bit on his bottom lip, and he would lick it off.  I think he really likes it!  We're going to increase the amounts of times we try giving him tastes of food throughout the day so he can get more used to that new sensory input.  Throughout this week he's been trying out the squash and bananas, and he seems to be getting used to both.  He definitely relies on his "binky" to calm him down if it all becomes too overwhelming for him, but we're lucky he has this method of soothing himself. 

This week we're having another little brush with this nasty flu season.  We're not exactly sure what's going on, and it's definitely not severe enough to warrant bringing him in, but he's just ever so slightly under the weather.  We have his oxygen turned up just to 3/4 liters as he works through this because he sats were hanging out around 94-96 a couple nights ago on 1/2 a liter.  We've got teams of people sending him warm thoughts and lots of prayers, and I definitely think they are working.  Right now as I type he's sleeping comfortably, but the mornings are rough for him.  He wakes up congested, which leads to coughing, which leads to him gagging and throwing up because he hasn't quite figured out how to clear his throat yet.  Yesterday it was so bad right before we were leaving for work, Dave ended up having to take the day off.  We've been giving him extra nebulizer treatments and last night we added the humidifier back into our room, and it seems to have helped loosen him up a bit.  He still managed to throw up 3 times this morning, so I called GI to see if it might be related to his formula.  The nurse I spoke to said she had a feeling he might have a little virus and the coughing is triggering the vomiting, so we are just going to watch him and keep a close eye on things and the GI doctor is going to call me to follow up when he comes in on Monday.  Any healthy thoughts and prayers you can send his way during this time (and the rest of this nasty flu season) are greatly appreciated! 

Since Dave was home with him yesterday, he ended up taking him to his ENT appointment yesterday afternoon.  So, I'll relay the information he told me, but just realize this is all secondhand for me.  The ENT doctor reviewed the ABR (hearing test) Ryan had that confirmed bilateral profound hearing loss.  He asked Dave a lot of questions about his medical history, prior surgeries requiring anesthesia, and all the medicines he's been on, especially antibiotics.  There was a lot of discussion (this part isn't secondhand actually since Dave called me and put me on speaker to answer a lot of these questions) about the eye surgery he had at CHLA in August that resulted in a trach infection (steno) and required major antibiotics.  I have a very strong feeling that his hearing loss may have occurred around that time.  I'm not sure if I've mentioned this here before, so I apologize for repeating myself if I have, but I distinctly remember a physical therapist coming to see Ryan at CHLA a few days before his surgery and giving him a basic assessment.  He clearly responded to the toys she had that made sounds.  And recently, as if that wasn't enough evidence he could hear at one point, I had the recollection of all the times at CHOC that they would test the fire alarms, and he would FREAK.  It's true that the strobe lights go off, too, but he would always be covered up with a thick blanket in his isolette, and he would still react as if the sound was bothering him.  And all of these that I remember took place BEFORE the surgery at CHLA, including one time where they were testing all their systems in preparation of the new tower opening, and they ran the fire alarm for an hour straight.  He definitely heard it, I have no question in my mind.  Anyways, back to the appointment.  Dave was really hopeful and optimistic based on what this doctor had to say, so I'm praying that rubs off on me some.  He said that the doctor explained that there are a lot of factors that will tell us if hearing aids or the cochlear implant will help him hear.  They are going to do an MRI (which means he needs to be sedated again) to get some images of the anatomy of his ear.  The best case scenario is that the only damage is to the hairs on the nerve of the ear.  This is typically what happens when ototoxic drugs affect the hearing.  They can damage thousands of those little hairs and cause hearing loss.  If this is the case, then there is a good chance he'll be able to hear with hearing aids or implants.  The second option is that there is actual nerve damage.  Then the third option is that the cochlear bone is missing or not developed.  Based on my feelings that he *could* hear at one point, I'm thinking it won't be option C.  But we'll have to wait and see.  Once he gets that MRI, they'll know a little bit more about what options he has for hearing aids.  Thankfully, since the ENT is a medical doctor, all of this testing is covered by insurance.  We are still working with CCS to see if we can get some assistance for the hearing aids if they decide that they could work for him.  In the meantime, we've been working on learning a few signs each day.  After we teach them to ourselves, I teach them to Dani.  She remembered a few we used with her when she was a baby, like milk, please, more, all done, and now she's learned a few more including a few animals we've been reading about in one of her books.  We are really praying that he'll be able to have some sort of hearing, but we are also completely prepared for any scenario. 

Ryan's missing left contact was never found, so we ordered him a replacement and it arrived yesterday.  So he's back to seeing out of both eyes :)  So far it doesn't seem like it's making a huge difference.  I think the biggest improvement comes with the right contact, but I'm sure the left contact can't hurt.  Hopefully as he adjusts and gets used to having it in again, he will start focusing on even more.  He is definitely seeing things even without the left contact.  Yesterday Dave held a toy ball in front of him, and he said he locked his eyes right on it right away and reached out to grab it.  We are so encouraged by everything he's going each and every day!

I think that's it for now.  I'll try to upload some more pictures off my phone to post here.  Thank you for all of the constant love and prayers for our little guy.  He's definitely growing stronger and healthier every day, thanks in large part to all of you who are supporting us through this and praying for his healing.  We truly appreciate it.

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