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!

Extending grace

 Christmas has come and gone and Santa was good to all of us! Ryan got Legos, action figures, Oculus, money, a Nerf gun, a laser tag set...all great stuff. Lauren got books, a new game called Picky Kitty that she loves, a food truck, a Gabby's Dollhouse, a baby doll, a Polly Pocket, some My Little Pony toys, etc. Both kids really seemed to enjoy the holiday and we were so thankful to be able to safely gather with family. 

Both kids are vaccinated. It went totally fine for Ryan. He said after his second dose the next day he had chills really bad but he had a math test at school, so he toughed it out. So proud of him! He's a kid who in the past has used any excuse under the sun to get out of school. He and I have had some great time together lately! A couple weeks ago he and I went out to dinner and to Target together just the two of us. Today we went shopping together again. Lauren's second vaccine was complicated because she got COVID between doses. She got pretty sick after her second dose and had fatigue and some vomiting. She was right as rain within a couple hours of waking the next day. My parents are the real MVPs for hanging out with her while she was feeling the effects from her vaccine so we could both work. 

I've resolved over the last couple of months to try and be a little more hands on with Lauren and allow less screen time. This is challenging because usually screen time is the only way I can get a minute to myself. So we've been playing more games (Yahtzee, Candy Land, Picky Kitty) and we've been encouraging her to play with her toys (obviously easier since now she has a bunch of new ones). Today was 45 degrees and sunny so I took her to the park, then to the grocery store. She did great at the park! She climbed a ton of stuff, tried new things, and was basically a gross motor superstar. The original plan was a bigger grocery store but behaviorally she was struggling some, so we went to a smaller local store instead. The price increase to shop there isn't always worth it, but it was today. Haha. 

We're still working on the CPAP. We've had it almost 2 weeks and so far we're only using it in the kitchen for a maximum of 1 hour with all the lights on while watching YouTube. I think it's pretty claustrophobic for her. She had a complete panic/anxiety attack the first time we tried and she was still shaking like a leaf after 15 minutes of cuddles and back rubs (mask off at that point). I felt horrible for her! So we're taking it slow. We took a couple days off because of Christmas. Tonight the plan is to try it in her bed (while I'm with her) while she watches her nightly Daniel Tiger video. Because she is so tough, I think it can be easy to forget that medical trauma can be a very real thing and she's been through a lot in her little life so far. Her last surgery in December 2019 involved me walking her back to the OR (we thought it would be easier for her to walk in willingly), her refusing Versed to calm her down, and me helping restrain her with the mask over her face. So it's not at all surprising to me that a CPAP is a hard sell for her. She's also wearing nighttime braces on her legs (alternating one each night), so it's an added layer of crap we expect her to do while sleeping. She hasn't been sleeping too horribly lately, but she did wake up one night this week singing LOUDLY at 3am, then 4am and she was absolutely convinced it was morning. If she doesn't sleep, I don't sleep. Mama is tired. A great night is no wakes ups, a good night is one quick wake up. She's been having stomach aches since she got COVID in mid-November, which is also affecting sleep. I'm trying to be super strict about her diet to help her belly feel better and to help with her overall health (over-eating is a big concern and food is a comfort for her I think). 

I'm finding myself trying to have more patience and extend grace when Lauren is struggling behaviorally. Sometimes I just don't know if it's really behavioral, if it's communication, if it's anxiety about medical stuff, if it's just being upset about not getting her way. I can find myself having to really try to enjoy her company and it feels unkind, so I'm trying to extend myself some grace as well. It can be really hard to balance grace with necessary discipline. This is highlighted by us being together a whole lot last week and this week because of the school break! We've hired two amazing caregivers that have been so helpful. Once comes the two mornings I work and it's super helpful because I cannot get myself ready and keep Lauren occupied and expect to leave my house on time. We have another caregiver who comes usually one evening a week and they play games, do arts and crafts, eat dinner together, read, etc while I escape for a little bit. Sometimes that's just napping, sometimes it's going for a walk, sometimes it's going out to dinner with Greg, sometimes it's hanging out with Ryan. It's so amazing and I'm so thankful we're able to do it.

Food truck fun!

Night braces

Lately she is really loving Greg so much, it's adorable.

Picky Kitty is the newest game and current favorite.

My amazing kiddos on Christmas morning.

COVID is here

 Well, 20 months after this pandemic started, COVID has hit our house. Lauren has been sick since early November, but I first thought it was due to her CPAP sleep study. Then she got vaccinated. Then she tested negative 11/5 (She had a fever, which I expected from the vaccine but felt testing was prudent because she was coughing). Her cough never really went way. Tuesday I got a call to pick her up from school and her belly was hurting and it seemed like her cough had picked up a little more. So she and I both tested "just to be safe". She was positive! I was negative. I'm planning to test again today. I have a headache, slight stuffy nose, my stomach is weird (when isn't it though), my throat hurts on and off, and yesterday I got the chills a couple times. My joints always hurt maybe a little bit more than normal, but I might just be noticing more. Who knows! A couple other extended family members have it as well right now. Lauren's morning caregiver has it. It's apparently really bad in Michigan right now and we are definitely feeling it.

Lauren is doing pretty well! She's a little more sleepy than usual but otherwise her normal crazy self. She woke me up this morning by climbing in my bed and saying "Hi mommy! It's my buhfday!" (Her birthday is in February, LOL.) She's been super snuggly which is nice. She told me this morning her chest hurts when she coughs but I honestly have not even heard her cough yet and we've been awake for 2 hours.

Lauren health update

 Lauren had a sleep study August 12th that showed severe obstructive sleep apnea with sleep related hypoventilation and retained carbon dioxide. She's already had 2 surgeries for her sleep apnea, so obviously this is stressful! 

We saw sleep medicine today. Dr. Patel discussed how patients with trisomy 21 (aka Down syndrome) are more likely to have sleep apnea, and especially refractory sleep apnea (meaning it persists after treatment interventions). She recommended seeing ENT (already scheduled next week) to discuss a sleep endoscopy and possible surgical options. We do NOT want another surgery. Not only does it suck for obvious reasons (risks, nobody wants surgery, etc) any surgery tends to throw off her entire sleep schedule and it takes months to get back into a better routine. Plus time off work and school, recovery is misery (for Lauren and for me). Dr. Patel did not seem super optimistic that CPAP alone will fix this problem enough. She said she thinks ENT will for sure want her to have a sleep endoscopy (which will have to be done with her laying on her belly to get a clear picture of her anatomy while sleeping because she does not sleep on her back at all). She did say we're seeing the best ENT (we know, he's great!) in the system.

So. Not great news. Not horrible news. I'm really hoping Lauren can tolerate the CPAP mask. Dr. Patel thinks just a nasal mask should be okay, with a chin strap to help keep her mouth closed. This all of course depends on Lauren's ability to tolerate/comply treatment. She did say sometimes once you start treatment, central apneas can emerge (the brain not telling her to breathe during sleep. She had 3 of these out of 102 events during the most recent study), in which case she'd need further intervention (bipap vs cpap). I'm working the day she sees ENT, so Greg will take her and I'll conference in by phone.

We're also going to be starting a couple weeks of serial casting soon to both ankles to stretch her achilles tendon and get her more range of motion. This will include hard casts on both ankles for a couple of weeks, then nighttime braces to help her stay stretched. This will hopefully help her walk better and more efficiently, allowing her to better strengthen her legs and her left hip and improve overall mobility.

The good news is that school started and Lauren is loving it so far! We're really thankful for a fantastic teacher and Lauren's best friend is in her class. 

Ryan brag post

Ryan. He is just AMAZING lately. I am so proud of him. I am so happy for him. He seems so much more comfortable in his own skin.

-He's eating chicken nuggets and fries that I make at home (dinosaur shape preferred, LOL)

-He tried (and liked) Chic-Fil-A

-He ordered his own ice cream this week when we went after an evening hike at Kensington.

-He's been willingly leaving the house to go places and has even gone on a couple random bike rides of his own volition. He's gone grocery shopping with me a couple times! While some of this might be attributed to him getting to pick a snack or candy while we're there, he used to just ask me to bring him something. And honestly I'm all for incentives when it comes to hard/non-preferred things.

-His new weekly chore is mowing the lawn and he does it with minimal complaining. And he does a pretty good job!

-He made plans with a friend all on his own today and had fun when he went.

-He's going to a summer day camp run by our school district and while he doesn't love it, he hasn't complained about going even one time. 

-He has been amazingly nice to Lauren lately.

-He chose to spend his own money on his cousin's birthday present and declined when I offered to pay him back because he wanted the gift to be from him.

-He's been playing outside more.

-He went to an event at church with us a couple weeks ago and had fun. Today while we were there (he generally doesn't come with us to service) one of the leaders made a point to tell us how great he did and that he was outgoing and had a great time. He tried Kayaking earlier this month when we went on vacation. He tried a new food while we were on vacation, too! I am just so proud of how hard he works and how much he loves his people and his pets. He has such a kind heart. He is such a source of joy for me.

These things probably seem like no big deal to most parents. But parenting a kid with an anxiety disorder is a different ballgame and these are really huge wins for us!