It appears I went over a whole month without updating about Ryan! I have no excuse other than it's been so completely busy over here. But, we're on a week long break from school so I'm making time this fine Sunday morning to post an update. This is my "church time" since we aren't risking bringing the kids to church during flu season. Just one of the bummer side effects of preemie flu season lockdown, but we know it's temporary and we need to do what's best to keep Ryan from getting sick.
So, here are some updates. It's always hard to know where to begin!
Lungs/heart: I already updated about our last pulmonary hypertension clinic in September. The cardiologist was pleased that his PPHN seems to be on its way out again, but we're keeping him on the meds through flu season as a safety net. I didn't get to meet with the pulmonologist because I had to leave after waiting a few hours. Since then, we have been rescheduled for the next PPHN clinic at the end of December. We've been in to the pulmonologist's office just to get the first RSV shot of FIVE :( but we didn't meet with the doctor. A nurse practitioner checked him over and he's been doing pretty well as far as sats on his oxygen. He does still desat to the low 90s/high 80s if his prongs come out in his sleep, so we know he's still not ready to come off the o2 yet, but part of me wonders if he's just so used to it now that his body doesn't send his lungs the signal to start taking deeper breaths when the prongs come out to compensate. But, we don't really want to mess with anything during flu season because he needs all the extra support he can get, so we'll readdress this in the spring. He's currently on 3/4 liters of oxygen 24/7 and he's satting great (97-100).
Hearing: We're still putting the hearing aids in to have him get used to wearing them, but when the batteries die we don't worry about switching them. They don't help him hear sound, so wearing them is just practice for when he gets the Cochlear Implants placed. We are still on track for that to happen in January, but we are currently waiting on a call back from the scheduler at USC who needs to set up a pre-surgery assessment appointment. The director of education from USC called me and basically did a phone interview to see what I knew about the Cochlear Implant, success/fail rates, follow up procedures, etc. I think she was pretty impressed with my research. She started by asking his medical history, and I was able to rattle off every test, MRI, CT scan, indication of hearing/non-hearing, etc from birth to present without skipping a beat. Then when she asked what I knew about CI, I was able to tell her that I had spoken with people from California Deaf Blind Children's Services, the deaf/hard of hearing specialists in our local school district, our regional center, and even a few different parents who have children with the implants (thanks to all of YOU guys for those connections!) and she was definitely pleased. I also told her that we had decided on our own to take him to a developmental neurologist to see if SHE thought he'd be a good candidate. We are aware that the implants will only work as well as the brain will be able to receive the sound input and process it in a way that will translate into sound, and the neurologist was very optimistic. So, I think we've saved ourselves a lot of time by getting those things taken care of and out of the way before scheduling the surgery. Now we just need to meet with them and get the exact date in January. :) The only thing we could foresee hindering this would be if he got sick in the meantime, so we are being extra cautious about exposing him to germs, etc.
GI and Blended Diet: About 2 weeks ago, Ryan's vomiting started to increase again and we couldn't figure out what we were doing wrong. We'd tried eliminating certain things like dairy, trying different rates and volumes, etc., to no avail. Finally, we decided, maybe his super high fat/high calorie recipe was just too much for him to handle. So we decided to change it up and just think like "normal" parents. What would we normally feed a 20 month old? Surely not avocado with tomato paste and honey and molasses and coconut oil and almonds and banana and blah blah blah all mixed together! So, we would take whatever we were eating (or Dani was eating) and just blend it up with some liquids to thin it out. Think mac and cheese with some banana and apple juice. We also started doing more feeds throughout the day at smaller volumes, and it's been working great! He's only thrown up one time in the last 8-10 days, which is miraculous. So we are going to stick with this for a while and see how it affects his weight. So far, he has lost a few ounces, but nothing to concerning. If he gets under 18lbs we'll have to make some adjustments. I feel like having his stomach not so full all the time is actually helping with his activity level, which means his burning more calories rolling around and playing...so, you know, catch 22.
Eyes: Ryan is still allowing us to put in his contacts, but he sure does rub his eyes a lot when they are in! I guess it's good that he's noticing and somewhat protesting, but dang those things are hard to find when they pop out. And he is getting really good at making them pop out. So we spend a lot of time on all fours crawling around trying to retrieve them :)
Development: This might be a big one. Ryan is still significantly delayed in his development. At 20 months/17 months adjusted, he's not sitting up on his own, not crawling, etc. His therapists do a lot of assessments on him, and a few weeks ago they brought up Autism. The big indicator is that he doesn't make eye contact with us. We assumed that it had something to do with being deaf, that he didn't know sound was coming out of our mouths so he had no real reason to look at our faces. But, we came to find out that the opposite is actually true for deaf kids. If they can't hear, they have MORE motivation to look at you to see your reaction as they are exploring things. So if they pick up a toy they aren't sure about, they might turn and look back at mommy to see if she gives a face of approval or denial. Another indicator is the way he focuses on staring at certain things, like his hands for example. He'll put his hand right in front of his eyes and just stare. Again, we thought maybe this was part of his visual impairment, but apparently it's an indicator of Autism. So, while we have definitely noticed all of these issues, we always attributed them to something else that we thought he would just "grow out of" as we worked on improving his hearing and vision. Since that is not the case, we will be documenting all of his behaviors and the therapists are going to apply for more therapy hours for him that will focus on social development to address this. As he does improve, this is the type of label they can remove down the road if necessary, but for now, we're going to look at it as a positive to get him more help and more services. It also gives us a direction and strategies we can use with him to help this improve when the therapists aren't here with him. And on the bright side, he is making gains, albeit slowly. That's all we can hope for!
General: Just over a month ago the full time nurse we had moved out of state, and then we ended up with two nurses who split the week. I was a bit nervous about this at first, but both of his new nurses are great and they each have their own style, so it's good for Ryan to have a little variety, I think. He really is such an easy, mellow little guy aside from all the crazy medical issues, so he's probably a nurses dream patient :) My mom has also been a huge help with him and Dani as always.
While Ryan's overall medical issues listed above are pretty stable or improving, we have a small issue we're dealing with right now in that he does not do well with changes in the weather. Since it's been flip flopping between hot and dry and cold and damp, he's been waking up congested and coughing. We actually called in this morning to see if there was anything over the counter we could give to help with the mucous, and they actually recommended honey for children his age. They said that in side by side studies with guaifenesin, honey performed just as well without the risk of side effects. So, we've been giving him honey orally and it really does seem to help.
I think that's everything...WHEW! We are really looking forward to this week at home spending time with these guys and seeing family for Thanksgiving. This will be the first time we'll have to bring him a pack and play or something to contain him since he can roll around pretty much anywhere now! We hope you all have a lovely and blessed Thanksgiving as well. So much for which to be thankful!