Post-Surgery Checkup

Alex had his post-surgery meeting today with his surgeon. His ears completely stopped bleeding two days ago, as did his nose. His incisions also still look great. We never noticed any sort of balance issues or change in feeding behavior, so really, we didn’t have any questions for him besides asking about him snorting occasionally.

The checkup was about as simple as it gets. He took a look at the incisions and ran a finger along them, probably to get an idea of the swelling. He then took a look inside of his ears and noted that he had a little bit of dried blood “flakes” in both of them, so we can expect to see those. He also mentioned that though the incisions look great, there’s a chance that they may widen as the skull grows, but even if it did, his scars would probably not be noticeable unless you knew to look for them. He also noted that the pink / red hue of the incisions can take up to two years to completely clear out, but I don’t really even notice it now. Bottom line, the kid is in great shape.

Aside from that, he basically told me that we were essentially done with him; not in a bad way, though. Alex hast his implants and his healing looks great. Unless he has any issues that are related to the implants, the surgeon’s job is finished! He said that he’d be keeping an eye out for Alex at Buffalo Hearing and Speech since he spends a day per month there, so he’ll be in touch.

All in all, it took fifteen minutes between walking in and walking out of the office. I unexpectedly felt pretty good about walking out of there, because unless something weird happens, we’re done with that. The feeling of finishing things and putting them behind us on this whole adventure is pretty refreshing. One last office to worry about.

Speaking of finishing things – we suspect Alex might wrap up his physical therapy soon. Despite the amount of heartache he gave us by not crawling until a little bit later, he’s basically exploded in the past two weeks in terms of crawling and pulling up on things. I think between this, the genetic results, and all of our physical therapist’s evaluations, we’re really just not all that worried anymore about his development for the foreseeable future. Our early intervention coordinator called me a week or two ago saying that she needed to get together with our physical therapist – I suspect this could be why. I know that when she goes we’ll both feel bummed, because she’s been a key cog in keeping us a little more sane over the last eight months. At the same time, though, that’ll be another great victory for our Alex. I really like that we’re getting to the point where Alex’s therapies are going to be in the hands of one organization that is constantly receiving accolades and that has already earned our trust and respect through the people we’ve met there.

That’s all I can think of that’s going on right now. Still blows my mind that he’s going to start hearing us in just two weeks. We’ll certainly be filming it, but aren’t expecting any insane reactions like the ones you see on Youtube. The way it’s generally done is that the sound is started at a low level so that it isn’t overwhelming, so a lot of times the audiologist will just look for very subtle signs that the patient is getting that signal and stop there for the time being. But we’ll see. I’ll be just as happy if it freaks him out, because we’ll still know it’s working.

Hopefully it’s all smooth sailing until then.

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The Big Day is Sneaking Up

It’s pretty crazy to write this and think that a week from now, Alex will have undergone his CI surgery to place the electrodes into his little cochleas and give him the foundation he needs to be able to start hearing us.

I feel strangely calm about the whole thing. I think most of that is because Shannon and I have both done our research on the surgery and, maybe more importantly, we’ve seen a significant amount of parents post on the forums we read every day about how they went in for surgery and it was a relative cinch. It’s also nice to know that it’s very likely that he’ll be home the day of his surgery as well. We’ve already seen Alex go under from anesthesia twice now and know that he doesn’t have any really terrible reactions on his way out, so that’s not a huge concern either.

I’ve written before that I have a lot of conflicting feelings about the surgery, but the one that trumps the rest is that it’s going to be great to just be done with it. The thing I get the most emotional about is when I look at his perfect little head and think about the fact that he’s going to have scars on it for the rest of his life unless he goes out of his way to undo them (and we WILL give him that option down the road if he wants it). The implants being in his head don’t bother me too much because I’m completely of the mind that over the larger scheme of things, they’ll be temporary (based on the stuff being worked on now and future tech), and they’re going to enable some wonderful things that he simply doesn’t have access to today. I’m completely encouraged by the results that other parents have gotten in the past using older technologies and therapy methodologies, and it’s comforting to know that whatever solution we give Alex now, it’s going to be the most crude he’ll ever have to deal with. It’s only getting better as time goes on – just ask the parents who went through this in the 90s when processors were still body worn and barely gave access to speech.

All of this said, I have no doubt that this is going to be one of the toughest steps of the journey. Friday’s going to be tough, and I’ve often read that the surgery day is one of the hardest parts of the beginning of the journey, but the good news is that it’s relatively downhill from there. We’re going to have our issues, we’re going to have a lot of speech therapy to put the little guy through, we’re going to have to advocate for him, but I think that stuff will be a little easier to deal with because we’ll have a lot more control in those situations.

Even after all of the hours of researching and reading blogs of the parents who have already gone down this path, it blows my mind that in a month or so, my son is going to be able to hear me say his name, his mom tell him she loves him, and his older sister sing “Frozen” over and over again. I’ve brought up a few times with Shannon since we got our surgery date that I was stoked that Alex would have his “ears” for Christmas this year, especially since I feel that we were sort of robbed of a good one last year since the news that he was deaf was still very fresh at that point. One year later, he MAY be saying a few words here and there. Just awesome.

It’s going to be a hellishly long five or six hours. But I can’t wait to put this puppy behind us and get to the good stuff. There’s a light at the end of this tunnel.

The Early Intervention Evaluation / Plan Development Session

Last Friday was our first “big” meeting with the Early Intervention folks, so I wanted to outline how that went.

Three kind ladies came over; one was the EI coordinator that I had met with the week prior, one was a physical therapist, and one was a speech therapist. They introduced themselves, shook hands, took shoes off, yadda yadda. Very polite and kind, which I only bring up because this was a somewhat unnerving meeting for us. It’s easy to just write out what was happening and leave it to a series of events, but underneath everything there’s that feeling of “Wow, my kid is really in Early Intervention.” It was nice that the introduction to all of this was in OUR house and with non-clinical… humans. I felt that they were very considerate of the situation.

After the introductions, we basically got right to playtime with Alex. The ladies watched how he moved, cooed, reacted to us, etc. He was very well-behaved and even put on a bit of a show. After about twenty minutes of observation, the physical therapist made note that Alex was heavily favoring his right side, especially when laying on his back. She said that this wasn’t a MAJOR concern, but was still somewhat of a concern that we’d want to work on. She showed us a few exercises that we could perform and also emphasized that we’d want to give Alex a little more tummy time. None of that came as too much of a surprise. Shannon’s very perceptive and had noticed that Alex favors his side, and her equally perceptive mother had noted the same thing. As far as neck strength, we were admittedly much better with ensuring that Taylor had plenty of tummy time when she was a baby. I think a downstream effect of the gutpunch we received with Alex’s hearing loss was that some of those things fell more into the background. The physical therapist rated Alex as being somewhat behind where he should be at his age, but not by much.

The speech therapist noted numerous times that Alex was doing wonderfully with his cooing and eye contact. Hearing about his little speech was another both-good-and-bad moment. Great, he can coo, but he can’t hear himself and he’s going to stop eventually. The positive outweighed the negative, though, and we were thrilled when the speech therapist put his cognitive and speech skills ahead of Alex’s age. At least we have a little buffer! It was also nice to hear it validated that his eye contact was solid.

The next step of the meeting was to develop the plan. It was emphasized that we would be able to make any changes or tweaks as we go along and as we learn more about what’s going on with Alex, so we didn’t have to worry at all about oral vs. total communication or anything like that. That kept things pretty basic.

The output of that plan:

  • Alex will have a physical therapist that will check up on him once a month to see how he’s doing with his neck strength and to ensure that his right-side-favoring doesn’t become a real issue. Again, the PT wasn’t extremely concerned, but she did say it’s something that we should keep an eye on before his muscles get too used to the imbalance and it becomes more difficult to fix. Shannon and I actually like the idea that he’s going to get that individualized attention and have yet another set of eyes watching him for anything that might come up.
  • Alex will go through Buffalo Hearing and Speech for his audiological needs (hearing aids, etc). No surprise there.
  • Alex will have a speech therapist – I’m interested and excited to see what comes out of this at this young of an age.
  • Alex will have a teacher of the deaf. I asked what this person would be doing because I honestly didn’t know, and we were told that, for example, this person can make recommendations on what kind of toys we can get for Alex that are visual, how we can organize things for him, etc. I’m also really looking forward to working with this person and picking their brain.

We’ll have four appointments a month, and they’ll all be tentatively targeted to happen between 1:00 and 3:00 on Fridays at our house (which is huge!). That’s when Taylor naps and when Shannon’s mom is watching the kids, and it’s also one of the easier times for me to work from home or take PTO. I plan on being at as many of the appointments as I possibly can be. I really like the idea of Shannon’s mom being so involved because she’s a huge part of our kids’ lives. She’s already expressed how excited she is and she’ll take copious notes. Her readiness to do everything she can for Alex comes as no surprise.

That basically wraps it up. It was a whirlwind of activity that lasted for about an hour and twenty minutes, but I felt like Shannon and I soaked a lot of really good information up. We’ve DEFINITELY stepped up our game with the concerns that the PT brought up, and it feels good to be working on something with him / for him. I think we’ve already seen some progress; we’ll definitely keep it up.

My attitude toward Early Intervention is becoming increasingly grateful – I LIKE that Alex has all of these people who are going to be watching out for him and helping us know how to best steer him along the way. It’s like he has a team dedicated to helping him kick ass even above and beyond his hearing loss.

Next up – we have an appointment at Buffalo Hearing and Speech this week that I mentioned a few posts ago. We’re hoping Alex gets fitted for hearing aids and that we learn a bit more about the oral and total communication tracks that are offered. This Friday we’re supposed to have a follow-up meeting with the NICU Alex stayed at to follow up, but we’re hoping we can get out of it on the basis that we’re already in Early Intervention and getting evaluated, so there seems to be little point in wasting time by re-iterating that all is not honky dory. If we have to go to the meeting, however, we’re hoping to line up an appointment with the Genetics department there to get that moving along while we’re there. The hospital isn’t exactly next door to us and Shannon and I are trying to streamline these meetings wherever possible for the sake of our bosses’ sanity.

In other news, Alex continues to become an awesome kid. He’s very smiley and is starting to laugh a little more consistently, and he’s generally pretty easy going. He loves his family. I’m getting less sad about looking at him during these moments and getting my chin up higher as time goes on. It’s nice to see some of the initial pieces coming into place.