Family update (mostly Lauren)

 Wow! I can't believe I haven't written since March. It feels like so much life has happened in the last 6 months. We had an awesome summer. Behaviorally, Lauren is doing AMAZING and has matured so much. She's such a joy to be around and I genuinely miss her when we're not together. We went up north several times as a family this summer and it was a lot of fun.

Healthwise, things are going well. Her severe sleep apnea is still untreated as she doesn't tolerate CPAP. We have plans to (eventually) try a full face scuba style mask, but I don't want to mix too many new things in at once and she just started school at a new building this week. We were going to try for a surgery in Boston as part of a clinical trial, but her BMI unfortunately excluded her. This lead to us recently seeing a pediatric weight management clinic and it was such a positive appointment. (Note, we never ever talk about Lauren's weight as a negative thing in front of her and our concerns are obviously 100% health/mobility related in regards to her weight.) Her BMI has actually trended down quite a bit over the last year with dietary and activity changes we've made as a family. We're going to check some labs as the doctor suspects Lauren has some insulin resistance. Depending on labs, we might start some medication (Metformin) but we don't want ot jump into anything so the plan is to see what her labs look like and then we'll likely wait 6 months to see how we do with more dietary changes.

We see cardiology in October for our yearly echo and visit. Sadly, our most recent cardiologist jumped ship and went to a different health system so we're seeing somebody new. Hopefully we like this person as much as we liked the last two she had!

Lauren started 5th grade this year! It's a new school and she has been very nervous, but so far it's going great and her best friend is in her class. The teacher seems super sweet. Lauren will be unhappy to realize that she has PE twice a week (LOL), but she already said music is her favorite special. She's now on an adaptive cheer team at a competitive cheer gym and she absolutely loves it. She's been swimming all summer (in both our small backyard pool and swim lessons). The most recent roun of swim lessons started yesterday but her bus was late and she missed it, so we're hopeful that next week we'll have better luck! She moved up to the next group and is very excited. She did some lessons this summer at a local swim club and they legit taught her how to swim! She can now do the big slide at the public pool because she can safely swim her way to the ladder. It was a big deal. I'm so proud.

Ryan started middle school and it's going well so far! He has classes and lunch with his friends. He's joining the robotics team. He's interested in a few after school clubs. It's very exciting!!

Greg got a promotion at work and is working day shift now. It's amazing!! 

I've been doing fairly well! I had an ER visit for dehydration in June (the last day of school so I missed out on that fun stuff, sadly) and restarted IV hydration for a while. The plan for now is it do it on an as-needed basis when I'm struggling or when I have a big event coming up (like going to Washington DC next week!). Unfortunately, it took FIVE tries for my IV on Wednesday and I was sweating profusely and wanted to cry. Zero stars, do not recommend. Otherwise, things are going well. Work is great, I'm only working about 20 hours a week and it's perfect for us.

March update - lots going on

 I have more medical updates. Lauren has been unfortunately having continued abdominal pain. She had a gastric emptying study last week. It took a total of 5 hours (plus an extra hour because we did bloodwork while we were at the hospital). She was such a champ! We brought lots of fun stuff to keep us occupied since it was mostly waiting around. We played Yahtzee 3 times, read 12 books, she watched shows on YouTube, she played games on her tablet. It was a long day. 

Her results came back borderline delayed gastric emptying. Normal is below 10% at the 4 hour mark. She was at 13%. Since she's still having pain they're changing her reflux medication from Prilosec twice a day to Prevacid twice a day (if insurance covers it). They wanted me to restart Periactin (a medication we tried recently and stopped due to severe sleep dysregulation and behavior issues) and I kindly declined. The nurse tried to encourage me to give it another try, but I finally explained she was literally not sleeping, crying all the time, and being super destructive (swiping countertops, aggression at school and at home) and she agreed that it probably wasn't best to try again. So the plan is to try the Prevacid for one week (once it arrives from the mail order pharmacy our insurance requires us to use), then if she's not better we'll likely try erythromycin. They noted in the chart that I have gastroparesis (for comparison, my retention at 4 hours was 41%) though they are theorizing her issue is post-viral/covid related. We also have to try her on a low fat and low fiber diet. So not fun for a kid, but it is what it is. Most of what she loves to eat does not fit this diet, so it's going to be a pretty big change for her. We'll do the best we can.

We saw sleep medicine/neurology last week as well. She's not tolerating CPAP, so the plan is to change to bipap, but we need another sleep study first and I can't get anyone to call me back to schedule it. Sleep medicine seemed to have a very different opinion about the Inspire surgery than ENT so now I'm not at all confident what we'll do. Neurology recommended an autism evaluation and recommended we see pediatric psychiatry or psychology. That's kind of a road block because there aren't a lot of options that accept our insurance. I don't think she has autism so I'm not sure that we'll pursue that, just because I don't know that it's the best use of our time and resources. I'm open to seeing psychiatry, we'll see.

We also saw ophthalmology last week, that was the easy appointment! Lauren picked out some sparkly pink glasses that will hopefully arrive in a couple weeks!

Medical update

 The sleep apnea saga continues...

Lauren is not tolerating the CPAP well at all. She seems to be able to get started and will even fall asleep with it on. But after about 30 minutes she wakes up, realizes it's on, and seems to panic and needs it off immediately. The longest we've ever gone was about an hour and a half and it happened one time. Usually we're making it about 25-40 minutes. It's frustrating, but I know it's not something we can force and she really is trying.

She saw ENT yesterday. I planned to bring up the Inspire procedure (hypoglossal nerve stimulator) and the doctor brought it up before I could. He said he thinks she'd be a great candidate. Currently there are studies happening for ages 10+ in both Boston and Cincinnati and he said he'd be happy to sign off if we want to travel to have it done. However, he's actively seeking opportunities to learn and once he does it on two adults he can do in pediatric patients. He hopes to be certified within the year. We're likely choosing to wait for him to do it, for multiple reasons. A surgeon we already know and has already operated on Lauren, being close to home for both surgery and follow up, being close to home in case of complications, etc. I think waiting will be a better choice. He did say he this likely won't completely take away her sleep apnea, but it can bring her AHI from 16 to 8. If Lauren remains unable to tolerate CPAP (I do have hope though!) we have to try and get the severity of the sleep apnea down. There's another surgery he can do (epiglottopexy), but I think we're going to wait and see how things pan out with both the CPAP and our ENT getting certified to do the Inspire procedure. He did say the Inspire surgery would leave visible scarring. The nerve stimulator device would go under the chest muscle, so an incision on her chest, plus also incremental incisions on her neck as they feed the electrode to the hypoglossal nerve. We're not super concerned about scarring (she already has scars on her chest/belly/arm from her heart surgery and PICC line placement as a baby) so this isn't really a deterrent for us, but I appreciate the heads up because I didn't know that.

In the meantime, we're going to continue to try and get Lauren to be able to use the CPAP. She's really trying and she's so sweet about it.

Her post-COVID GI issues remain a frustration. We started medication for acid reflux in October and she improved about 95%, but once she got covid things got much worse and didn't really get better. There was a day earlier this month where I got multiple messages/calls from school because Lauren was complaining of belly pain. We saw GI earlier this month. She thinks it might be post-viral delayed gastric emptying. She gave us two new medications to try (hycosamine and cyproheptadine). The hycosamine seemed to me to make the stomach pain worse, so with the blessing of the GI nurse we stopped that one after a few days. The cyproheptadine does seem to be helping and she's complained a lot less! I'm going to follow up by phone with GI next week for an update and we'll decide how to proceed with testing. I've kept detailed notes of the date, time of day pain happens, GI symptoms, and food intake. The doctor is thinking either a gastric emptying study (and scope depending on results) or scope with biopsy as the next step. We can't keep her on the cyproheptadine long term because it causes increased appetite and leads to weight gain, and we've worked so hard on keeping Lauren at a healthier weight. If she gains too much weight her sleep apnea could get worse, the stress on her heart could be worse, etc. So it's a delicate balance of doing what works while keeping all parts of her as healthy as possible. 

We follow up with immunology next month and will get updated blood work to look at Lauren's immune system function. She got covid between vaccine doses, which was obviously unfortunate. The plan was to check her covid antibodies about 4-6 weeks after vaccination to see how well her body responded to the vaccine. I'm not sure if that timeline changes at all since she also had covid, but I know we're due for blood work anyway. 

I need to make an appointment with sleep medicine to follow up, but it seems kind of unnecessary at this point in time since she isn't really tolerating the CPAP. I feel like it will be time out of school to drive 30 minutes to the hospital for them to tell us she needs to wear the CPAP more. We know this already. I'm not in a rush to do that, but I will say the doctor and the medical staff at that office are so incredibly kind! 

On a fun note, Lauren started ballet at the rec center and she really loves it! I was unsure how she'd do in a class with typical peers (I did put her down an age group so she's with 5-7 year olds). She enjoys it so much and loves to show me what they learned in class. 

I love this picture of her because even though you can't see her smile, her eyes look so happy! This was at ballet right before she went into class this week.

Thus concludes my medical update. It feels like kind of a lot, but at the same time not because nothing is happening yet. We're just enjoying the winter (brrr) and playing Yahtzee six times a day until it gets nice outside! We've bundled up and gone to the park a couple of times which has been so nice!