Wednesday, August 28, 2013

Hearing Aids

So, Ryan has been wearing his hearing aids for almost a week now, and I figure it's time to update since I'm sure you all are wondering if we are seeing any improvements.  Well, there's good news and bad news.  Bad news first:  they don't really seem to be doing anything.  But, I got that out of the way first because the GOOD news is that it really isn't shocking and it actually makes the choice to move forward with Cochlear Implants even easier!  The audiologist warned us that he probably wouldn't hear anything with them, even though they are turned up to the highest setting.  It means that his ears just don't have the ability to process sound.  So the next question is, will his brain have the ability to process sound?  The Cochlear Implants will basically bypass the ear and bring sound straight to the brain.  This was the whole reason I wanted to see a neurologist before we went down this road, and the fact that she was super optimistic about all of his behaviors while lacking the sense of sound is very encouraging. I told the audiologist how hopeful the neurologist was about the CIs, and she said that's great news.  Of course we won't know for sure what will happen until we actually try them out, but we are very encouraged that he will be a candidate since the hearing aids don't work and his ear anatomy is normal.

I have been reading up a lot of Deaf culture and the Deaf community, and I am very aware that there is a bit of a stigma associated with having a Cochlear Implant.  Some people may question our choice to have Ryan get them, but this is our reasoning.  1) He is a perfect candidate.  If there was anyone telling me that we could go through with this and it might not even help at all, I'd definitely reconsider.  But in doing our research and talking to as many medical professionals as possible, everyone seems to agree that he has a very good chance of hearing with the implants.  2) He is starting out young.  The best success rates for hearing and oral language seem to be with either post lingual adults who lose their hearing later in life after they have already acquired language and children who never had hearing or language and get the implants early on.  Ryan fits into the latter, and that is a huge advantage for him.  So, as long as his overall health permits it, we'll move forward the sooner the better.  But we're definitely keeping his lungs and heart at the forefront of our priorities, so if the doctors don't think he can handle that major of a surgery, we'll wait until he can.

We've also been asked if we are going to teach Ryan sign language, and the answer is yes.  Some institutes that provide therapies for CI recipients I've read will discourage their patients from learning ASL because they want them to focus on the oral speaking.  We are not of this mindset.  We taught Dani baby sign language from early on even though she is hearing because it's just another way to communicate your wants and needs.  We want to encourage Ryan to communicate in any way possible, and I don't think that learning ASL will prevent him from speaking orally.  Of course, there is still a ton of research to be done on our parts, but for now the plan is to finish up the 6 months hearing aid trial, start the road to CIs, and continue to teach and learn ASL along the way.

Thank you so much for your prayers and good thoughts as we continue along this journey!

post signature

Wednesday, August 21, 2013

Overdue update!

It's been a while since I've updated, and I love that people are so kind they actually ask questions like "How is the blenderized diet going?" when they ask about Ryan.  You guys are so awesome for still following along over here!  Big thanks to Michelle for inspiring this long overdue update tonight. ;)

GI/dietician:  We had our first meeting with the dietician around 2 weeks ago.  You may recall that this was about a month after we had already switched Ryan over to a blenderized diet, so we weren't sure how the appointment would go.  We were so pleased to find that she was completely on board with him getting real food through his tube, and she was impressed with all the research I had done to get him started.  Huge thanks to and the Blenderized Food for Tubies Facebook page for all the helpful information! 

She went over all the foods I typically put in his blends, and we discovered that I was giving him a bit more protein than he needed in a day.  Well, really, I was giving him WAY too much protein, which probably explained why his stools were a bit on the hard side (sorry, TMI).  He has been completely regular since the day we switched, but he definitely has those days were he's really pushing to get things going.  So, she gave us some suggestions for adjustments to make to cut back on some of the protein and add some extra fiber to make his stools softer.  We're still playing around with his recipes, but for the most part I think we have it down to what is going to work.  The main thing is, we want him to gain weight.  Dave suggested adding sugar (because, well, duh...who doesn't gain weight when eating lots of sugar) and she recommended using maple syrup!  In the two weeks since we met with her, he's already up over a pound!  We weighed him tonight and he's 18lbs 8oz, so he's finally back on an upward slope for his weight gain :)

Something else I found interesting was the number of calories they want him getting each day.  When he was on formula, he was getting just under 900 calories a day, and then when she added up the calories of these blends, they were between 1500-1800 and he still wasn't gaining weight, just maintaining.  She wanted to keep his blends in that calorie range, and just swap out some of the protein for carbs, sugars, and fiber.  So my one year old is eating the same number of calories as many adults!  The reason we came up with is because it's so much work for his body just to breathe, he's actually burning a lot more calories than most babies just working those lungs.  Plus he has all his therapy sessions and he's getting more active rolling around on the floor, so he needs a lot of extra calories just to keep the weight on.  I'm so glad we switched because giving him this many calories a day from just formula or pediasure would've been pretty crazy!

In other news, Ryan is getting so social and funny :)  He loves to be held and he has the cutest belly laugh when he really gets giggling about something.  We have our hearing aid fitting on Friday, so it will be exciting to see how he reacts to those.  He is still desatting to the low 90s/high 80s if his prongs come out, so no new news as far as getting the oxygen off any time soon, but the weight gain should hopefully help a lot! 

I'm sure I'm missing a lot, he amazes and impresses me every day with all he is doing.  Oh, we had his IFSP last week (for all you teachers out there, that's like an IEP for a child who is too young to be in school yet), and the Regional Center is going to continue providing all of his current therapy services at 4 hours per week.  We were hoping for an increase to 5 to have an extra hour with OT to work on oral motor skills, but they felt that we could just play with his schedule and use his Speech Therapist for fewer hours and switch her hours with extra OT hours.  The problem is, we love his ST because she is fluent in ASL and she does a lot of great work with him.  So, we'll probably just stick with what we have now.

Thanks for the constant love and support you send our way.  Even when the blog is quiet for a stretch, we are still constantly feeling blessed by all of you for thinking of our little man.

post signature

Saturday, August 3, 2013

A Minor Procedure

Some of you who are friends with me on Facebook or follow Spray Pal on Instagram may have noticed that I posted a few pictures from a little procedure Ryan had to have yesterday.  I didn't talk too much about it because it wasn't anything crazy, and I didn't want to make a big deal.  Basically, he had a tiny abscess which first appeared around 2 months ago after he first had his constipation troubles.  He had an ultrasound to confirm that it was an abscess, then we saw our peds surgeon, Dr. Lam.  I may have updated about this back then, but he told us to take antibiotics, see if it resolves, and then call him to schedule this procedure to close it up if it comes back.  Well, it did resolve, and then he got constipated again, and then it came back. :(  So he had to go back on antibiotics, wait for it to heal, and then we'd schedule the procedure.  Well, it was back and forth like this for some time before he finally decided to just take care of it without any more antibiotics.  What happened was a little track formed while he was pushing and straining, and the bacteria from the bowels gets trapped in the track and causes it to have a little pocket of hard infected stuff like pus that won't quite heal on its own.  Some get large enough that they make their way to the surface and resolve on their own, but his never did.  So Dr. Lam went in and cauterized the lining of the track so that the walls could close up and heal back together and keep out the bacteria.  It literally took 2 minutes, and they didn't even need to put an IV in him, which I was thrilled about.  They did put him under anesthesia, but just the gas, so he woke up fine and you really couldn't even tell he'd been through anything!  I honestly can't even see the hole where he must have gone in from, he just looks completely healed.

TMI WARNING:  So, speaking of his constipation issues...seriously happy to report that since we have started with 100% blended food diet, he has not missed a day!  This kid is so regular now, he's actually pooping MORE than we ever imagined would be possible!  Our job after this procedure was to just make sure we kept his bum clean and give him a quick back or water rinse after any bowel movements.  They actually gave me this turkey baster tool (mental note: remove from kitchen when finished using) to use to squirt water on his bottom after he poops.  Well, since we've been home, we must have used that thing at least 10 times.  It was getting to the point yesterday where every diaper change had poop in it!  We are so excited that his new diet is really helping out in that department.

Overall, we are completely pleased that we took the plunge and switched over to the blenderized diet.  His sats are still doing relatively well, as I mentioned above, he is well beyond regular now, and his reflux definitely seems to be improving.  He still throws up, so we aren't completely out of the woods, but most of the times he does throw up it seems like it's just due to his gag reflex.  Like tonight I decided to let him try a few tiny bites of some softened cheese, and he didn't quite chew it enough before he let it go down his throat, so he started coughing and gagging and then he threw up and out came the chunk of cheese with the tail end of his last meal.  We can pretty well say that it wasn't reflux related, but rather reflex related.  Hopefully he'll start to get the hang of the whole chew, swallow, don't throw up routine soon so we can get him those calories orally and get him off the gtube, but it's definitely going to be a long road.

Hearing:  We had an appointment this week with Providence Hearing Center so we could purchase Ryan's hearing aids and get started on the 6 month trial.  Basically, she told us that based on his hearing tests, it's pretty unlikely that the hearing aids will work for him.  There's a chance he could pick up some really loud noises with them, but it wouldn't likely be enough to help him hear or speak normally.  I know it seems strange to even bother with them with that being the case, but it's part of the process before you get a CI (Cochlear Implant).  The reasoning is that the CI procedure it permanent, so it destroys any chance you'd have of hearing naturally.  So, if the testing happened to be wrong (which is pretty rare) or by some miracle he can actually hear ok with the hearing aids, it's better to find out sooner rather than later.  If he doesn't show a big enough improvement with the hearing aids, then we can move forward with CIs at that time.  Ryan got fitted for his cool new zebra print hearing aid, and we will pick them up and get them started on August 23rd. :)

Thanks for continuing to check in on our little guy.  Here's hoping we have even more encouraging things to update in the coming weeks.  Prayers for strength, good eating, good weight gain, and good hearing are greatly appreciated!

post signature