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!

Be medium nice to me

 This is hard. Harder than I thought it would be almost 10 years post-diagnosis. You know how everyone jokes that toddlers are so hard and irrational and thank God it doesn't last forever? Yeah, we're still there cognitively and Lauren is 9.5 years old. It is just plain hard. Believe me, there are moments sprinkled in, as with all toddlers, where I just can't believe I get to parent such an adorable and sweet child. It's her natural defense mechanism. But oh my gosh, this doesn't end! It's a constant internal battle of letting her do things for herself and encouraging her to do things for herself vs helping her with the things she truly needs help with (she cannot follow multi-step directions) vs me genuinely wanting to mother her and do things for her. Parenting a child with a cognitive impairment has intricacies that you just can't image if you haven't done it. Regular parenting strategies do not work. This internal struggle happens every waking moment...and there are a lot of them because she doesn't fucking sleep.

We have another sleep study scheduled next month, thankfully. Greg slept in bed with her on vacation last week and was shocked at how poor her sleep quality is. (I tried to sleep with them and made it about 20 minutes before finding somewhere else to sleep!) She never stops moving. She wakes up gasping. She snores so loud. She's already had her tonsils and adenoids removed. Then a sleep study showed severe obstructive sleep apnea, so she had lingual tonsils removed in December 2019. We never did the follow up sleep study because COVID changed the world as we know it. But now we're finally getting that done and I'm making a pretty educated guess that her sleep apnea is still severe. I reeeeaaalllyyy do not want to do another surgery. But we can't leave this untreated. So we'll get referred for a CPAP and who knows if she'll be able/willing to do it. When we saw ENT right before her most recent surgery he said there was a study out about a hypoglossal nerve stimulator (it's pretty interesting actually!), but it wasn't being done on kids. Now I think it is an option, so once we have the sleep study results we can discuss our options. The hypoglossal nerve simulator has pretty specific criteria so I don't even know if this will be an option for Lauren. And I really do want to avoid surgery. I just need her to sleep. I need it for her (untreated sleep apnea puts terrible stress on the heart and she's obviously had significant cardiac issues in the past), and I need it for me. I'm pretty sure her behavior has to be impacted by her poor sleep quality. So. We have a sleep study next month and a repeat visit with ENT the following month. We also see cardiology and immunology next month, luckily both after the sleep study so if the results are as crappy as I'm anticipating, we can discuss with her specialists. We start PT next week. 

We went on vacation last week and it was a blast. We had a great time. Full stop. But it's hard sometimes to think about how different our lives would be by now if we had a typical parenting experience. It doesn't mean we love Lauren any less or that we don't love the family we've created. It's nice when grandparents help and we love it, but it doesn't change the fact that this is our life 24 hours a day. I feel like I'm momming wrong because I don't feel happy, sweet, rainbows and unicorns thoughts about parenting a child with a disability a lot of the time. Life just feels really heavy right now. So if you see me out and about, be nice to me. But not too nice because then I'll cry in public and I hate that. So just be medium nice to me!

Summer fun

 I officially mailed off Lauren's Medicaid application packet today! We've already met our deductible for her this year, but still have copays and coinsurance, and she starts physical therapy later this month so I'm super hopeful we'll have her Medicaid in place shortly. Once that's actually in place, we can work towards the finding and hiring of staff (respite and community living supports) to give us some much needed breaks and help.

I've said before, I sometimes forget how not typical Lauren is until I spend time with a typical 9 year old. She cannot multitask. If left unsupervised for a second, she's destructive and it's not mean intended, she just has no impulse control. She let me sleep until 7:25am this week once but also snuck downstairs, found scissors, and cut the bottom off of one of Greg's shirts 😆 She has trouble navigating uneven surfaces and fell pretty hard at my grandma's last week. Yesterday she was irritated that her breakfast plate was next to her and she pushed it off the table, it shattered everywhere (meanwhile I was trying to drink one measly cup of coffee!). She tries so hard! She's just like an adorable Tasmanian Devil who doesn't like to sleep.

As I type, contractors are here working on our new patio! I am overjoyed. The deck was rotted and needed to go, so Greg (with the help of family, friends, and a neighbor) tore out the deck and we've been waiting for better weather so the concrete work can start. The worlds best dog has been staying at my parents house until it's done because there's not a way to access the backyard safely from the house until the patio is done. I miss him! My parents love having him and my dad is trying to rename him and adopt him, LOL. We leave for out of town tomorrow and come back Wednesday, so we're hoping everything is finished when we get back. I'm pretty sure I'm going to make everyone who comes over enter through the backyard to admire the patio.

Speaking of when we get back...Lauren is starting soccer next week! She is so excited, and I am so excited. My twin sister is coaching and I'm assistant coaching (aka doing whatever she tells me because I suck at sports). My nephew is playing on the same team. We can't wait! Lauren is super pumped and I ordered her some purple soccer socks with rainbow unicorns on them.

It's literally rained for the past week at least so we haven't done anything to exciting. Last weekend we did a zoo event for a classmate of Lauren's and it was a blast. It was muggy, rainy, and the kids loved it. 

Unicorn day...just to remind myself they exist.

 Today has been a unicorn day and I'm writing this post to remind myself that days like this DO exist, especially when we have a hard day. I picked Lauren up for a dentist appointment, which she was less than thrilled (and even less cooperative) for. I picked her up from school before lunch, so we got McDonalds as a treat on our way home (no cavities!). Then she played in her backyard blow up pool. Then we went for a bike ride around the block and she rode almost the entire time by herself! Then we played with sidewalk chalk together. We played rock paper scissors. She went to bed with a fairly average amount of arguing, nothing much to write home about. 

It was a GREAT day. 

I had her IEP this morning and that went great too. Lauren started the year reading at a DRA level 6 and is finishing up at level 14. That is really great progress. There's summer programming the district is offering and it appeared as though special education students like Lauren weren't invited to attend. So I wrote an email (kind, but not happy) asking about it and ended up getting a call today from Lauren's program director saying she can sign up for whatever I want to sign her up for and they'll make sure she's accommodated and the work is modified! 

I'm feeling incredibly blessed. Lauren was officially invited onto the children's waiver program so hopefully within the next couple of months we'll have medicaid in place and can start thinking of respite/CLS hours. 

It just feels like we've had so many blessings!

It's June!

 The countdown is on. 17 days until the last day of school for the year! I'm both excited and terrified. This is my first summer not working full time since I became a mom. I'm buying a summer pass to our local community pool (this is lofty, unsure if this will be safe or realistic to do by myself with Lauren during the week but I'm willing to try). I've almost abandoned all pretense of bedtime and I don't care what they eat for lunch at school anymore, LOL.

Hockey started! I joined an instructional league with my twin sister and last week was the first week. It was so much fun, I'm so glad we signed up. I've been feeling pretty good lately which is a huge blessing. I still have good days and bad days, but lately my bad days are tolerable. I'm of course nervous with hot weather coming but really hopeful my new treatment plan will help.

Ryan is doing great and has been pretty happy. He's excited for summer break, but not excited that we are planning to find some summer learning opportunities for him. He is definitely excited to go up north this summer! He's been driving the Razor side by side around the campground and is getting more comfortable with it every weekend! This past weekend he even went on the trails in the woods (with Greg) for a little bit. He was even talked (aka guilted) into giving Lauren a ride a couple times and she loved it.

Lauren was a total champ this weekend!! Usually while we're up north at the campground I spend a whole lot of time making sure Lauren is safe, happy, entertained, etc and it can feel a whole lot like parenting in a different place while every other adult socializes. But this weekend she was seriously so good. She played Yahtzee (by herself and with us) as well as another fun dice game she kind of invented (a mix of Yahtzee and Tenzi). She's big into her imaginary friend (who she claims is her sister and is also named Lauren, it gets confusing) and I can tell her to "go play with your sister" when I need a break and she actually does. She barely whined, was super good when we went out to dinner, and played great with the other kids at the campground. She hung out with grandma while we took Ryan to Meijer for a little bit. It was a unicorn weekend, honestly. 

I'm trying to get Lauren more engaged in our every day life and spending less time on electronics. It's part of her bedtime routine to eat a snack and watch YouTube. She's usually pretty great about self limiting this and loves to play with her toys or play in the backyard. She has a few workbooks (she's working about a late kindergarten/early first grade level for most academics) she loves to work on. She's been really into coloring lately. A friend up north helped her watercolor paint a rose this weekend, it was so sweet!. She always loves to read books, we have a huge Thirty One tote filled with books for her to choose from.

We're only going up north one more weekend this month because we've got plans every other weekend. Our backyard is about to see some serious changes (Greg needs to rip out the deck to make way for the concrete patio that should be poured in a couple weeks), we have a wedding to go to, a birthday party, a friend of Lauren's has an Epilepsy walk coming up at the zoo at the end of the month. June looks really fun! And in July Lauren starts soccer, she's playing on the same team as her cousin and my twin sister and I are coaching. Hot weather aside, I love summer!

Up North Season

This week we have two more meetings to try and get Lauren on the list for the Medicaid waiver program. I am so hopeful but also skeptical. Time will tell.

Lauren did get her new bike!! She LOVES IT! She does so great riding it around our block (just over a mile). We've also had success getting her to walk around the block if I play a Disney soundtrack on my phone so she can dance her way through it. I haven't yet found an unpaved hiking trail I can take her to by myself for the summer (too hilly) but we do still have the state park closeby with a paved trail and a fun park to use as an incentive! I'm excited to get her moving her body this summer and feeling healthier.

We're going up north to the camper this weekend, finally! It's been over 7 months and we are so ready. We've gone some projects planned for our actual home this summer, so I'm looking forward to that too. We're going to have a fun summer!

I restarted my hydration infusions this week at a new infusion center. It went great! They knew a lot about POTS and everyone was so nice. I felt well enough to do a 2 mile hike the day after which was really fantastic. I've been still really fatigued and needing a nap almost every day (except for the days I work when I go to bed at 9pm, LOL) but I've really just started the new medication and haven't titrated my dose upward yet. I'm hopeful to get some relief soon. It's like a cycle of sleep and exercise. I feel better overall if I exercise, but if I exercise I don't have enough energy to get through the day without a nap. I'm thankful that I have the time and we have the ability to make this happen for our family. I'm able to be so much more present (and less bitchy, I hope) since I have more time to devote to my own health.

Check out this gem! How is it I can get a better picture with my iPhone on my front porch than Lifetouch can get with their fancy equipment?

Health update (me)

     I saw a new cardiologist today. I've not been feeling great the last little while after an amazing reprieve of symptoms. The doctor I saw today treats a lot of POTS patients and had some great treatment recommendations. 

    I've been having weird fluttery feelings in my chest that don't quite feel like normal palpitations. I went to the ER last week for a flare up of POTS and gastroparesis and my EKG was abnormal. It showed "nonspecific ST/T changes" which can mean nothing at all or it can indicate arrhythmia. I am no the current wearer of a 30 day cardiac event monitor! It's not cute, so I'm trying to find all of my high neck shirts so it's not visible. 

    She also recommended low dose naltrexone (or LDN) and said it's been shown to help with both POTS and gastroparesis. I'm willing to try anything at this point! I'll start that later this week. She also recommended a B vitamin to help with fatigue. She recommended restarting IV fluids but with lactated ringers instead of normal saline as she's seen some better results with LR. She offered physical therapy to help with conditioning, but I'm pretty active so I'm not going to pursue that at this time, but it's nice to have it as a reserve option. I'm going to continue to wear compression stockings/leggings and try to orally hydrate on days I'm able to take in enough fluids (gastroparesis complicates this, of course).

    She said both POTS and gastroparesis (in my case) are caused by an autoimmune disorder attacking my autonomic nervous system.

    Overall, it was a great appointment. I felt listened to. I felt heard. She said a lot of POTS patients get told to "see psychiatry" and are dismissed as not having a physical illness and said I was really lucky to have had a good cardiologist from the beginning. I love the doctor I was seeing, but I wanted a second opinion. I'll be switching over to this cardiologist to take over my care. My other doctor was great and was willing to try anything I suggested, I would print out studies and bring them to him with ideas. I will always appreciate how willing he is to listen! But today was amazing to have a doctor who is super familiar with my diagnoses offer ideas and suggestions. She's in the womens heart center and obviously sees a lot of women. She also called me young, so I will love her forever 😂

I'm excited to see how things go and I'm really hopeful that I'll start feeling better again! I'm still feeling a million times better than I did a year ago. But summer is coming and generally I do absolutely terribly in hot weather. Fingers crossed!

Little things and building community

     It's 5:15 on a Monday morning and I'm drinking coffee in a quiet house. I'd rather be SLEEPING in a quiet house, but I'll take what I can get! Lauren woke up around 3am (2:55 to be exact) and I haven't been able to fall back asleep. Once she wakes up at night, she often wakes more than once so it's really hard to get my brain to turn off. Since Greg works midnights, I'm the only adult here so I'm it for nighttime supervision. Now that I'm only working 2 days a week, it's not the worst ever. I can catch a nap while the kids are at school if I need to, but usually I just power through. Of course, today I'm working a 10 hour shift so I'll be a zombie by the time I get home this evening.

    We had a fun weekend! Friday while the kids were at school I went on a solo 2.6 mile hike at and it was beautiful. I saw deer, swans, birds, chipmunks, squirrels, and tons of plants. It's great to see things getting green again! I've discovered a love for hiking and I honestly think I love it so much because it's one thing I do that's just for me. Sometimes I'll bring Lauren (to a paved trail), or Ryan, or my mom, or Monte. I discovered my love of hiking just this past January, so even chilly days are a lot warmer than when I started. When I first started I was TERRIFIED of getting lost, even at a local trail. But honestly I'm super proud of myself and how well I've learned a sense of direction. At the local park trails, parking is south of the woods, so I will sometimes use the compass app on my phone if I've gotten turned around. But recently I did a longer hike at a local metropark and navigated the trail pretty well. If you know me, you know I am terrible with directions so I'm very excited.

    Saturday we went to a birthday party for my cousin's daughter. Because of COVID, it was the first time meeting her for a lot of us! It was outside at a park and everyone wore masks, it was great to see the whole family and feel safe while doing it. A lot of us are vaccinated, too. I got to hug my grandma. Luckily, my mom and dad are a great help with Lauren (Greg was sleeping) so I really did enjoy myself. The kids had so much fun. Ryan won a goldfish! The kids named him Nemo. Ryan and I snuck out to a local pet store and bought a 5 gallon tank with a filter as well as a various assortment of stuff to go with the tank. We spent a small fortune and it was totally worth it. So much fun! Growing up, we had a large freshwater tank and my sisters and I have great memories of "helping" our dad with it. Setting up Nemo's tank was hilarious on Saturday evening. Both kids were "helping", and yelling for Greg that I needed him to help. I actually didn't, and I figured it out all by myself! I did need his help with figuring out how to fill up the tank, I bought distilled water from the grocery store to fill the tank and it was so heavy, and it was drinking water so it was only coming out of a tiny little spout. I swear it would've taken a week if he hadn't gotten the cap off for me. Lauren was sad that Nemo was going to live in Ryan's room, which cracked me up on the inside. Can you imagine Lauren with unsupervised access to a fish tank for hours on end?! 

    Sunday Lauren and I went to church together, then I recruited the kids to help me pick up sticks (their job) and dog poop (my job) in the backyard. Once Greg woke up I snuck away for a hike. I got just under 2 miles in and it was amazing to see how green everything is getting! Then we went to our church small group. 

    It was a great weekend AND Lauren struggled behaviorally, which I think is just going to always be part of our journey. It's worse when she does a lot of physical activity and I think it's probably because her leg hurts. She did a ton of walking and playing (kid stuff!) at the party on Saturday. Yesterday at church she had to "take one break" (how she announces she's going to sit down, she'll just drop wherever she stands, LOL) after service, but we've been committed to not using the elevator and making her do the stairs (kids ministry is upstairs). 

    We've been working on mobility, weight, and activity and it's just going to come with some behavioral side effects. I sometimes have anxiety about what her behavior looks like in public places, but as she gets older I find I care a lot less about what our family looks like to other people. It helps that we've been able to build a community of people who meet us where we're at and love our kids for who they are. Our families are great, of course. Being up north is great, our campground friends are so kind. At church, everybody is happy to see Lauren. She is fully included with typical kids in kids ministry and she really loves going and seeing her friends! Our small group is comprised of really amazing people who accept Lauren where she's at on any particular day (adults and kids!). Sometimes that looks like high fives, hugs, and greetings. Sometimes it looks like poor eye contact and refusal to engage. Ryan often does not come to church with Lauren and me because he hates crowds. He comes with us to small group about 50% of the time. I certainly don't push it on weekends where we've done a lot of social stuff (like a big party on a Saturday like this week). I've learned that if we have a super busy and social weekend, Ryan tends to be "sick" on Monday mornings. Believe me, I WISH Ryan would want to go to youth group or attend church. But it's just not his personality and I've got to put my kids mental health at the top of the priority list. Our church community has shown such grace with both of our kids (same for the church we attended previously). I've never one time felt judged for Lauren's behavior or for Ryan's lack of attendance. Heck, Greg almost never comes to church because of his work schedule and I've never gotten anything other than a "Tell Greg we said hi!" or a friendly "So glad you could make it this morning!" to Lauren and me. That just honestly means the world to me. With a family that looks a little bit different, it feels great to not feel othered, left out, judged, or excluded. Yesterday was a particularly rough morning for Lauren and I. As we were walking into church, she veered in to the bathroom without warning and we were already running late. Instead of standing in line to check her in afterwards, a friend who was working the check-in desk had already printed our tags since she saw us head to the bathroom. It's the seemingly little things that make such a big difference.

    I struggle so much to admit that this life is hard because it feels like I'm complaining. I'm working so hard to use "and" instead of "but". This life is challenging but and so beautiful. I'm so grateful.

Seeking our wonderful

     Today, I was brave. It's gorgeous outside again and supposed to rain later today and tomorrow...and cloudy all next week. So I wanted to take Lauren to the Kensington Nature Center trails. Problem is, it's not paved and it's not super wheelchair friendly (obviously, because it's middle of the woods). We've done it before, but I've needed another (stronger) adult to help me muscle her chair up hills and over roots. And Lauren has to be feeling super cooperative because she just absolutely has to get out and walk for parts of it. 

    Well, our day got started. We went to the grocery store and Lauren was having some difficulty making great choices (aka not being nice) so I was nervous to try the nature trail with her. So instead, we went to Maybury State Park since there's a paved trail. It was so much FUN! It was an excellent workout for me since it's pretty hilly and pushing a 95lb kid in an adaptive stroller up those hills is not easy. She got out and walked a couple times, too! We went to the park after and they had an accessible swing that's on a track, and as we were leaving she said, "That swing was just like a roller coaster!"

    It's a 4.7 mile trail, and Lauren was ready to play at the playground, so we only went about a mile in and turned around, making our trek just under 2 miles. My twin sister and our dad did the whole trail this winter and loved it, next time I have some kid-free time on a beautiful day I'll definitely go back. I'm trying to build a list for the summer of things I can do alone with Lauren (ie, not needing another adult) and get her more active and moving. Generally, we refer to Lauren as a two-adult kind of kid. She needs somebody for the heavy lifting and a spotter 😆 The local pool is a big maybe, depending on mood and behavior that day. I've had some fun (aka shit show) times trying to get Lauren out of our city's rec center pool WITH another adult! Any beach is a hard pass. The local park is a yes because if she's having a behavior moment it's safe and easy to wait her out. We've definitely added Maybury as another yes. The zoo is a maybe. The nature trail is a maybe. Walking our neighborhood is a yes. Bike rides now are generally a yes, but her bike is too small so that's becoming less fun for her. Walks are tricky because I want to get her more exercise, but if the wheelchair is available she wants to sit in it. But if we don't bring it and she can't do it, it's not like I can carry her home or to the car or whatever. Her low muscle tone (associated with Down syndrome) and her foot issues (from her congenital bone fusion and subsequent foot surgery) make walking distances physically hard for her. It's way easier to get her to walk when my older sister and niece are with us because the girls love to play. It's hard to find motivators for Lauren that aren't food, so I've been using things like "Mommy will play Barbies with you" or "we can read books together" when we're done.

    Honestly sometimes it's not necessarily that things are physically (for her) hard. Sometimes when behavior is particularly challenging it's just not worth it to leave the house. WOULD we have fun if we did x, y, or z? Maybe, but sometimes it's a disaster. Sometimes my chronic illness is a factor and I know I don't have the motivation or ability to get through an outing on a bad behavior day. So we'll take today as a win and start planning for more exciting days soon.

    So. Is it brave to take your 9 year old on a paved hike and to the park without a second adult? Generally, probably not. But for us (and lots of other special needs families) life looks a little different. My life motto has been that life doesn't have to be perfect to be wonderful, so we are just going to keep seeking our wonderful. 

    

PANDAS is back... and Easter

    Ryan started showing symptoms of a PANDAS flare this week. It might've actually been going on a bit longer and I was a little bit in denial, but this week it was obvious. He was clearing his throat excessively, he was chapped all the way around his mouth, and his hands were peeling. Plus he had a significant meltdown early this week that broke my mama heart because I knew it was anxiety based. (For Ryan's privacy, I'm usually purposely vague on what exactly this looks like for him.) For him, all signs of a strep exposure and resulting PANDAS flare. (One time my mom told me to get him checked because of a behavior change with zero actual illness symptoms and she was right, strep swab was positive!) Luckily I had some antibiotics at home from last time (and I cleared it with his doctor!) so we got that started really quickly and he's pretty much back to baseline. I didn't even swab him for strep this time. Thank the Lord he usually recovers so quickly once we start antibiotics. The plan is to try 10 days and see how he's doing at that point before deciding if more are needed. I was originally pretty sad because since his tonsillectomy in June he's been doing so well and I hoped we were done with this forever, and this just kind of snuck up on us. But today was a great day and he was back to laughing with his friends online, playing with his cat, playing outside, and wanting to spend time with us. 

    It feels good to have our old Ryan back and selfishly, I'm glad to be back to having at least one kid who listens to me! Lauren has been having problems being kind again this week and she apologizes profusely, "I'm sorry I'm being mean. I will try to be kind." over and over again. I know she's trying! But by bedtime, this mama is ready for a break.

    Easter was amazing. The weather was 70 and sunny, which is best case scenario in Michigan. We went to church as a family, then Greg, Lauren, and I went to a friend's house to celebrate another friend's baptism (Ryan chose to stay home), and then we all went to Grandma Nita's for Easter dinner. It was PERFECT! 

    Today I escaped and got my hair done for the first time in forever and it was magical. The COVID case numbers are crazy high here, and I'm afraid schools will be remote again soon. I was luckily able to reschedule my next week Friday appointment to this week. We have had a few days of solid 70's, but next week is supposed to slip back down to the 60's. Perfect hiking weather! Hopefully the kids can stay in school and I can escape on my days off and spend some time in the woods with my dog or walking in the park with my twin on her lunch break. 

Highs and lows

Every relationship has highs and lows. My parenting relationship with Lauren is no different. I struggle so much with feeling like I'm enough for her, like I'm the mom she deserves. I know I've shared this before, but usually on the hard days, the days she might not love me, I know that I love her enough for both of us. Obviously that's easier said that done and there have been many days I've shed tears over what that looks like on those hard days. I end up feeling so defeated and it makes it hard to even try and engage with her. It's hard because a lot of times lately she's not necessarily physically hard (other than the fact that I can't pick her up so if she drops/flops I have to wait it out) but it's hard because she's just unkind. Lauren is a verbal processor. She is a stream of consciousness type of thinker and she just says everything that comes to mind. I'm so thrilled that her verbal skills are so high, I feel like I constantly need to add this disclaimer.

It's really hard to hear your kid say, "I not love you" or "My brain tells me to tell mom she's ugly" over and over when it's accompanied by spitting, hitting, defiance, etc. This is toddler behavior...and Lauren is 9. It’s a huge reminder to me that she is not, cognitively, like her typical same aged peers. Generally, we can't go places on those days because I know it will be a total shit show. Yesterday I was hoping to take her to a nature trail she's loved in the past. BUT it requires an enormous amount of patience on my part and cooperation on her part to make that work. Yesterday was NOT our day, so our big outing was the grocery store. She was really great while we were there! But the process of getting there (getting her braces and shoes on) resulted in tears from both of us. I wasn't feeling great yesterday (chronic illness sucks) which was, I'm sure, a contributor to our bad day. I end up feeling like a failure at life on bad days because I feel like I'm failing my kids, I have no fucks left to give and don't want to spend time with my husband, I don't sleep well because I'm stressed. As much as Ryan loves to spend time alone or online with his friends, I know he needs more from me and I feel so guilty. It's like a carousel spinning too fast that I can't climb down from.

Today she woke up super happy and we've honestly had a fantastic day. We went to the grocery store...again. I'm incapable of remembering everything on my list in one trip! My sister and niece came over, the girls played outside a ton. Lauren has been super affectionate and sweet. I love days like this. I'm so thankful it was a good day. This weekend is Easter and we have fun things planned so I'm super hopeful we get some good days. We're celebrating my nephew's birthday on Friday. Sunday is Easter. My mother-in-law is coming home tonight for a week and I can't wait to spend time with her!

The kids are home on spring break this week which of course makes me terrified for summer. It will be my first summer working part time so I'll be responsible for my kids all day 5 whole days a week. This probably seems like a ridiculous thing to worry about to my stay at home mom friends...but I am nervous! I'm planning to make a schedule so Lauren and I both know what to expect and hopefully eliminate some of the whining (from both of us, LOL). I don't mean to seem unexcited because I am! I went part time at work mostly because of my health, but getting to spend more time with my kids was a huge factor in the decision! I just have so much self-doubt.

Here's a picture to document our great day! This was taken mid dance party in the driveway thanks to the Moana and Frozen 2 soundtracks!

And.

 I'm learning the importance of "and".

We got back from vacation in Florida this week! We had a lot of family time, got to see both sets of grandparents, had perfect weather, went to Disney World (can't wait to go back), AND are glad to be back home.

AND. Navigating this special needs parenting is proving to be a journey full of ands. This life is hard AND rewarding. Lauren is adorable, perfect, smart, AND has significant delays. I'm good at this AND I'm failing miserably. Lauren is extremely challenging to parent AND I'm obsessed with her. The ands often, but don't always, exist at the same time. 

Vacationing with kids is hard. Vacationing with kids who have disabilities is harder. It's the same game with a different set of rules and you don't have the home-field advantage. We had a total blast, but wow, it was really challenging! Behavior was a huge challenge, which I expected. Lauren did great mobility-wise and only fell twice while at Disney getting off of rides. We were so thankful for her adaptive stroller, the trip would obviously not be something possible for her without a mobility device. She LOVED the roller coasters!! I should've expected that, but didn't. Ryan had a blast and did really well, though he does not love rides like Lauren does. He had some anxiety challenges (TSA at the airport is a nightmare) but he had a great time and I'm so proud of him every day. I already can't wait to go back again and enjoy more family time. I've always said it's not a vacation if you have to take your kids (it's a trip). But honestly this felt mostly like a vacation and I loved it.

We're currently trying to get Lauren a waiver to be able to get Medicaid and some additional support services. In our state, Down syndrome is not an automatic qualifier. There's a Medicaid program we've used in the past that covers certain diagnoses (Down syndrome isn't one of them but some of the accompanying challenges are), but it has a fee schedule that ends up pretty costly for us so we've only used it the years we have big stuff (heart surgery in 2012, foot surgery and new adaptive stroller in 2018). We're trying to qualify now through a program I thought was only for more disabled kids. But writing down all of the areas Lauren requires assistance was a huge wake-up call for how far "behind" she is than her typical peers. I hate using the terms "behind" or "delayed" because I can't and never really have compared Lauren to a typical same-aged peer. For me it's like comparing apples and oranges: they're both fruit, but my expectations are completely different for each. Lauren has a total of 11 specialty care providers. That's not including therapy like physical therapy, occupational therapy, or speech therapy. Between premiums, co-pays, co-insurance, and deductibles (for both visits and treatments, equipment, etc)...she's definitely an expensive kid. Qualifying for this waiver program would allow not only Medicaid as a secondary insurance to help pay for these things, but we'd also qualify for help paying for respite and other community supports. We'd be able to devote more time to Ryan's needs and give him 1:1 time he desperately needs. 

In many ways Lauren is just like any other kid...and in many ways she isn't. Both are true. Both are valid. I'm learning, slowly, to live this journey in a way that honors and validates the ands.

How is at already February 2021?!

 I can't even believe how quickly time is flying! It's 2021, the kids are back in school (hallelujah), and Lauren turns 9  in less than a week. I'm still working part time, but am picking up about 4 hours extra each week at the COVID vaccine clinic. 

Last month Lauren got a palate expander appliance from the orthodontist. She's tolerating it WAY better than I expected. She's struggling to manager her saliva and her speech is a little tough to understand. But she's eating normally for the most part. Some foods get stuck in it, but it's honestly provided an easy way to eliminate some foods that aren't healthy anyway (sticky things like candy, chewy things like bread). Her lunches have become a lot more healthy, I'm sending her food in a bento box and she usually gets some turkey lunch meat, some turkey pepperoni, and some fruit. Maybe some applesauce. The first couple days she refused to eat all together, instead say she would just wait 8 months (when her palate expander comes out)! 

Ryan is the worlds best kid, as usual. He's adapted beautifully to school shifting around (virtual, in person, virtual, in person) and while he doesn't love math he does really enjoy history! He comes home with new information to tell me every day and I love it. He tried skiing last weekend! It was AMAZING!!! For a kid with anxiety to try something new, much less something that requires physical exertion, is a big deal. He did great on the bunny hill and so did I. It's an expensive hobby, but we're really hoping to go one more time this winter. 

My health has been mostly really good! I notice such a difference in my energy level and how my body feels now that I'm working part time and putting less stress on myself. That being said, I've been a little overzealous and I kind of a little bit passed out on Tuesday evening when I stood up from the couch. (Vision went black, rushing sound in my ears then total silence, heart absolutely pounding - my Apple Watch actually glitched out and didn't record a heart rate for 15 minutes during this time, and I fell back on the couch.) I slowly sat up and tried again only to have a major wave of dizziness and heart pounding a few minutes later, so I drank a Gatorade and laid down for an hour. I think it's because I just really overdid it physically. Thursday I worked 11 hours. Friday I went for a hike. Saturday we went skiing. Sunday I did went to church, went grocery shopping, worked out, went to small group at a friend's house. Monday I worked 11 hours, then worked out. Tuesday I cleaned my whole house, did a ton of errands, and worked out. I think my body was telling me to chill out! I think I sometimes purposely push myself to prove I CAN, but obviously just because I can do something doesn't mean I should. I felt really fatigued Wednesday (my only workout was taking the dog for a 1.5 mile walk) and Thursday (I worked an 11 hour shift). Friday I worked 4 hours at the vaccine clinic and then got 2 flat tires on the way home. Today I took it really easy, I just straightened up the house a bit, played with the kids, we went to Target, and I did a quick 20 minute workout). I'm trying to balance working out (because it makes me feel so much better overall) and giving myself a break.

Overall, 2021 is shaping up nicely for us! I'm thankful that we're all healthy and that I'm able to devote so much time to my family. 

Comparison is the thief of joy

 Comparison is the thief of joy. I've said this a million times and I believe it in my soul. 99% of the time I am truly not sad that Lauren is not where her typical peers are cognitively, socially, physically, etc. I do tend to compare her to other kids with Down syndrome her age, which is also unfair because every kid has different strengths and weaknesses. Every once in a while I'll see a kid with Down syndrome at work who is a rockstar with speech or gross motor skills or academics and I wonder what else I should be doing with Lauren. (Not that I'll actually do it, but I might think about it 😂)

Yesterday my nephews came over (they're 8 and 6) and Lauren played so nicely with them. They're both super good with her, make sure she can join in with play, and will even play Barbies with her. I ended up giving them all cups and spoons and let them dig in my yard so I could have 10 minutes of silence. 

Then we met my mother-in-law and my younger nephew and niece (3.5 years old and 20 months old) at the park. They are the cutest ever and Lauren had so much fun at the park! My heart broke a little bit though because while I knew Lauren's motor skills were significantly delayed, I didn't quite realize the extend until I saw the direct comparison at the park. Both my nephew and my niece were navigating the playground like champs, exploring everything, climbing on everything. Lauren needs significant help to navigate the playground (and it's an adaptive playground, which I'm so thankful we have in our city!). I was surprised Lauren was still eligible for physical therapy services at school this year until yesterday. 

Part of it is her weight, which we're working on. Part of it is her low muscle tone. Part of it is probably feeling unstable and being afraid she's going to get hurt again (her poor left leg!). We had a really great time yesterday, I don't at all mean to say that it wasn't one of our best days (she listened pretty good while we were there!) because it was. I think this is going to come up more as she gets older and the gap gets wider.

Look at this cutie on the swing!