I missed getting last week's post written because we were both wiped out with allergy / sinus / fun Central Texas spring air mess. This week, I wanted to give an overall medical update since the last post that had to do with medical stuff was from about 5 years ago...and some stuff has changed since then!
So, from the top down:
Lexi still struggles with some airway issues; most recently she's completed a few sleep studies that show she is having some pretty severe sleep apnea issues when she hits REM sleep. The first was in late 2021 and it showed that she was having about 39 episodes per hour. For reference, mild apnea is 5 episodes and moderate is 10. Everyone was in agreement with trying other options before going with a CPAP mask because at the time, she was still pretty sensitive to having things on her face after her stomach surgery earlier that summer. We started with a palette expander in the roof of her mouth which went in October of 2022 and came out in March of this year. Repeat sleep study results show that it did help, but not much. She still had about 27 apnea events per hour, her oxygen dipped as low as 83%, and she was retaining quite a bit of CO2. So we are going to move forward with the CPAP machine and will hopefully get that in time for her to adjust to using it before the surgeries. There is a minimal level of concern with how she will do coming out of a long period of anesthesia and hopefully this will help head that off. (That was as of her appointment today so hot off the press!)
 |
| Sleep Study pro! |
Also in 2021, she was referred back to Audiology for some concerns after her hearing test at school. We went through this before in Pre-K because her ear canals curve straight upward, the school machines were not able to get a good reading. This time, the audiologists did notice a slight low-tone hearing loss in both ears. Had an MRI done to make sure everything was working the way that it should in her inner ears; those results lead them to believe that the bones in her inner ears are slowly stiffening up, like her other joints would if she weren't so active. Unfortunately, you can't really stretch out your inner ear bones so this is something that will likely continue to progress as she ages. So, December of 2022 we added hearing aids to our daily routine. While there is no concern about speech delays or her backtracking in development, the hearing loss does cross over into vocal ranges so it is more preventative to make sure she is hearing everything she needs to and to hold off as long as possible before we potentially have to take any other steps. She has adjusted well to the hearing aids and we will continue to monitor as she grows.
 |
| Fitting first set of hearing aids |
Moving down: 2021 was a fun year...I didn't post the updates on this blog, but we spent 21 days in the hospital after her stomach rapidly expanded and cut off the blood supply causing all of the tissue to die. Why? We have no idea. Her surgeon said he has only seen this happen 5 times in his entire career and the only similarity was that all of the patients previously had a G-Tube. Some had been out for years, some for months so he's not even sure what the link is there. Anyway, since her gastrectomy, she has slowly worked her way from being on a 24-hour continuous feed to dropping that down to 12 hours so she is only connected at night! We've had a few late nights in the ER to get the tube put back in when it comes out, but otherwise she has adjusted as well as possible to her main source of nutrition being through the tube again. She can still eat by mouth but now that's reserved for all of the fun stuff that she wants to eat because it tastes good. She talked to her GI doctor at last Friday's appointment about repeating some allergy testing to see if she's outgrown her dairy and egg allergies, so her options might expand some after we get those results back!
The only other thing to report on is that she is going strong with using her walker and braces to get her legs as strong as possible before surgery this summer! At school she rotates days between walking and using her chair and we have started working on her being able to carry her own backpack when walking to help move her toward more independence and not having an aide to assist with some of those tasks. It's crazy to think that we are already looking at skills for middle school, but I'm glad we are giving her plenty of time to adjust.
This year, we have gotten two big purchases approved: the first was a new power chair and the second a manual chair that she can maneuver by herself. Power chair upgrades are available every 5 years and we made the last one last for 6 so it was time. But that also means that we had to consider everything that she may need in a chair until she turns 13! The primary focus that we looked at was moving toward independence and her being able to perform age-appropriate tasks around the house so the big push was for an elevating seat so that she can reach counters, drawers, sinks, etc. The manual chair will allow her to roll herself around during quick trips to the store, between the car and buildings, etc. to save mama's back from carrying her and give Lexi a little independence instead of having to ride in the basket. We don't usually haul her power chair when we are just going around town so this will be a huge help!
 |
| Elevating seat makes her almost as tall as mom! |
If you made it this far, thanks for hanging in there! We've had to make appointments with all of her specialists so they can sign off on her having surgery so I thought it would be a good time to get everyone caught up on what's been happening and what we are looking at moving into the summer.
