POTS update

I knew it was too good to be true! My cardiologist had said they could do my IV infusions in the office, which didn't sound quite right. His office staff said they couldn't do it, but he said they could. I was supposed to go today...and they called yesterday and said they can't. The good news in this is that I'm already set up at a nearby infusion center attached to a local hospital and I got next week Wednesday. I talked my insurance company and it's covered (HALLELUJAH!) thought I'm sure my co-pays won't be small. The downside is that this is a rough POTS week and I have to wait a full week for IV fluids, and I'm not currently on any medications. At work yesterday I had several episodes of dizziness and shortness of breath, getting pre-syncopal (vision going black and I feel like I'm going to pass out). Today is my day off, so I've been taking it super easy and I've already taken 2 naps and it's only 2pm. Ryan's been a little under the weather so I let him stay home an extra day (I swear he's coughing and sneezing, but it's also really nice to have him home!).

Great day!

Knock on wood, today has been almost a unicorn parenting day with Lauren. She let me get her dressed for church, didn't argue about heading out the door, she didn't argue with me at all when it was time to leave church, and she let me relax and read a little bit after church. We played Barbies and Playdoh together. We TRIED to accompany Ryan on a Pokemon Go walk in our neighborhood but after 2 houses Lauren decided to go home (even though I had her wheelchair with us, I tried forcing her in and then decided it was not worth fighting over) and I obviously can't leave her in the house even remotely unsupervised. Ryan then called and chatted with his grandma while he walked around a little bit. Ryan decided not to come to church with us (we went out to dinner with extended family last night and it was loud, but he ate! He told me that the air around him was squeezing him aka he was anxious, so I totally expected him to choose to stay home this morning.). He actually asked for waffles for breakfast! This might seem like no big deal, but he stopped eating waffles about a year ago when our wonder-nanny left, and this morning he actually asked for them. Anything we can add back into his limited food repertoire is a win, even if it's all carbs! AND he ate an apple this week and he stopped eating apples a couple months ago.

Greg's been fighting a respiratory illness for almost 3 weeks, so he's been down for the count. I would totally think it's the flu but he hasn't had a fever. I'm just hoping and praying nobody else in the house gets it! My symptoms have been pretty okay the last few days (thank God!) and when I felt dizzy today, Lauren let me lay down for a little bit.

Church today was awesome. Pastor Scott brought his oncologist to church and introduced her which I thought was really sweet. She talked about the importance of organ donation, which I super loved. Pastor talked about the Christmas story and the birth of Jesus. He talked about the possibility of Mary saying no to the angel who told her she would carry the son of God, and encouraged the congregation to think of anything God was asking us to do and to examine our hesitancy to say yes. It was really food for thought. As always, I really wish my husband could come to church with me, but the guy works every single night so he needs to sleep.

And now I'm attempting to make meatloaf (terrifying, first time ever) so in about an hour we'll know if we need to order pizza or not!

Fighting POTS

Things are pretty stable here. Lauren's still in pain, but managing much better now that she's in a walking cast for the next month. She recently tried to convince Greg that it was pajama day at school because she didn't want to get dressed. He had to text me to confirm that it was NOT pajama day! She's doing great in school, has moved up to reading level B (reading is a slow grow for her, I'm guessing we'll be at B all year), is doing great in speech therapy (Ms. Katie is so fun!), and is growing like a weed. Behavior is still so-so, but I live for the good days.

Ryan is doing FANTASTIC and I am so, so grateful for the progress he's made. His anxiety (knock on wood) has been really well controlled and he's been able to get out and do some really fun things that he wouldn't have been able to do a year ago.

I'm still feeling pretty bad. I've now tried (and failed) three medications to treat POTS. The most recent one, Northera, is the last resort medication when nothing else works. I can't try a beta blocker because my blood pressure is too low. I had a cardiology appointment today and ended up seeing a different doctor in the practice. He was awesome, and ended up bringing in my primary cardiologist so I got a two for one special. I mentioned a study I found in a medical journal discussing using IV fluids as a treatment option for POTS, and one of the authors is THE POTS guy and he's in Ohio. I had a copy of it in the car (my own symptoms and failed treatments highlighted), and the cardiologist asked to me go get it for him to review with my primary cardiologist. They reviewed it, and the plan is for me to start weekly IV fluid infusions beginning next week, in hopes of increasing my blood volume to a normal range and decreasing symptoms. I'd really like to feel well enough to exercise again. Before I got sick I was exercising about four times a week and I really miss it. My hopes are that with the IV fluids I'll be able to exercise and reverse the deconditioning that POTS has done to my body. I'm really grateful for a cardiology team willing to try whatever might work to help me regain function. I was almost in tears in the office today talking about the things I used to be able to do (ride my bike, ride the adaptive bike with Lauren, take the dog for walks, take my kids to the park, walk around a grocery store, travel without fear of getting seriously ill in an unfamiliar place without access to resources). I miss my life! All vacation plans are suspended right now due to my health (and also because life is expensive). Today my cardiologist recommended that I go to the Cleveland Clinic but my health insurance doesn't allow me to go outside of our health system. I recently saw a neurologist and had an MRI to rule out some other possible causes for my symptoms (it was normal, thank God). I'm trying REALLY hard to keep a positive attitude but it's really depressing to see how my life has changed over the last 6 months or so and I feel like my life is a shell of what it used to be. I'm fighting extreme fatigue, GI discomfort, dizziness, shortness of breath, vision changes and brain fog. The brain fog! I recently got totally disoriented driving home from my twin sister's house. She lives 2 miles away and I used to live on the same street, plus I grew up in this city. It's beyond frustrating. The silver lining is that my anxiety is pretty well managed because I'm honestly just too tired. I'm so thankful to have a team of doctors that are on my side and willing to try different things to see if we get results. If you're a praying person, please pray for me. If you're more of a good thoughts/vibes person, I'll take those too.

Foot update and lots of love

Lauren saw her orthopedic surgeon again yesterday. Her gait is actually worse than it was when it first started about 3 weeks ago. I took time off of work to take her myself instead of delegating to my (amazing) mom and (amazing) mom-in-law. This way I could speak with the surgeon and we could assess her together.

He agrees that something is wrong (duh). We are all on the same page now thinking it's her ankle. It's painful for her to get her ankle even to neutral. It's painful to bear weight. Something is making a popping sound in her ankle. She's holding her left leg out pretty far. At this point, nothing is showing up on x-ray. The plan is to wear a boot (walking cast) for a month and then if things aren't a lot better we're going to either do an MRI or CT scan of her ankle. He said he's not sure if this is a fracture we can't see on xray, a soft tissue problem, something resulting from her most recent fracture in June, something popping up from her surgery in March, or if she even has another tarsal coalition not showing up on xray. Because her gait looks eerily similar to how it did pre-surgery, except it's more painful now. I am genuinely hoping fixing this problem doesn't result in another surgery (first because surgery sucks, second because taking a lot of time off is a buzzkill because it prevents me from taking time off for vacations, etc). However we fix this problem, the goal is just to get her walking more functionally. Her mobility is majorly impacted by this new injury and it's only going to cause further mobility issues if we don't get it resolved. When does life settle down? Does it just not?

I'm in school now. I have about a week and a half left of this semester (5 week semesters). It's a lot more work than I expected! I can't say it's hard per say, but it's time consuming.

The good news is, today has been a fantastic day for behavior for Lauren. She got "super star" (earning a star for ever part of her day for following directions), she was good for speech therapy after school, and then for me this evening she took a bath, ate her bedtime snack, and then was so super snuggly at bedtime. I still rock her, and today she kept kissing my neck, face, arm, etc and telling me she loves me and I'm a "cute baby angel mommy". She told me she wants to let daddy rock her tomorrow (he always asks and she almost always says no). It was just one of those rare days where her behavior was awesome! She was pretty good at her appointment yesterday, but we waited a long time before seeing the doctor so total we were at the office for 2 hours. I really think she was as good as she was able to be...even if our visit involved eloping, telling a female resident "go away, I don't like you" (it turns out her hands were really cold), and purposefully wandering into the wrong room FIVE TIMES while coming back from going potty. Hey, she was happy.

Foot issues...again

If I could change one thing about Lauren, it would be her physical disability. It's hard to watch her struggle. It's hard to pick her up now that she's half my weight. Her mobility affects her weight, which affects her health. But then her weight affects her mobility. It's a cycle of scary possibilities and it breaks my heart!

As you know, Lauren had surgery in March (mid-foot osteotomy and tendon release) to correct a foot deformity known as a talo-navicular tarsal coalition. Before surgery her foot turned inward, and she complained of pain. She had surgery in March, got her cast off April 26th, then started walking independently around Memorial Day weekend. Her gait looked good, if a little externally rotated (basically the opposite of what we had before). She then had a spiral fracture to her tibia after tripping over a kid at school (aka she broke the same leg) and was casted again for about 4-5 weeks. She's been getting physical therapist with an AMAZING and so patient therapist, and her gait got a lot better! The orthopedic surgeon had told us her foot would likely always be externally rotated, but shouldn't cause too much of a problem. He said it could be fixed surgically in the future if necessary. Her PT worked with her a ton and showed us what to do at home and her gait looked wonderful.

Fast forward to about 2 weeks ago. All of the sudden her foot is internally rotated again, much worse than it was prior to surgery. She is complaining of ankle pain. I can't tell if it's internally rotated at the ankle, knee, or hip. She is walking and running, but refusing to walk a lot more and asking for her wheelchair. Her gait is back to being unsteady. This morning she actually held onto the wall while walking down the hallway to the stairs. And then once on the stairs she called me to have me hold her hand because she was scared. This hasn't happened in months!

She's seeing her orthopedic surgeon tomorrow morning. I want xrays of her whole leg and her hips. I'm afraid he's going to say it's "normal" and not do anything. It's not like I want another surgery, believe me. But I can't imagine her always walking this way, it's barely functional.

And I've been complaining about her behavior...and realized that her behavior had gotten so much better after her surgery that I joked with the surgeon that he fixed her personality in surgery. Now she's back to being a half demon child some days, and complaining of pain along with a changed gait. I'm a little nervous! I don't want surgery. But we HAVE to fix this. Maybe more physical therapy or different bracing can do the trick, I don't know.

On a cuter note, Lauren got an award today at school! She got recognized along with a couple other first graders for behavior. Her award is for doing her best in the hallway. Woo hoo!!

The life I thought I'd have

It's Halloween! Lauren is Anna right now at school, and for trick or treating tonight she'll be Elsa. I am really hoping she will walk this year for trick or treating! Evenings are hard for her because she gets pretty worn out during the day, so generally she isn't willing to do a whole lot of gross motor activity after 4pm. (Which is why she hits a wall in the middle of physical therapy every. single. time. Thank God for an extremely patient PT!)

She's been struggling a little with behavior lately and I just don't know what to do. For me in the morning, she's a holy terror. I'm only home one school morning a week, and I think she just acts out because she doesn't want to leave me. I get it, but it makes mornings so stressful. Today I had to practically threaten her with bodily harm (kidding!) to get her dressed. I put on her shoes and braces, she literally only had to sit down and give me her foot. Nope, not happening today. I'm pretty sure I burned a whole day's worth of calories wrestling her feet this morning. 

We switched her medicine schedule around because she wasn't sleeping at night. She takes Tenex, which is a non-stimulant ADHD medication. It calms her down and can have the side effect of sleepiness (that part usually stops after about a week, and it did for us). So when she stopped sleeping through the night, we moved her after school dose to bedtime. It worked! She sleeps through the night again! But behavior after school is not great. We tried increasing the morning dose to a full tablet instead of a half and it worked for a week or two. But now we're back to the way she was before meds after school. She's crabby, impulsive, irritable, and generally unkind. We are getting a whole lot more "I not love you" and a whole lot less cooperation. It's so stressful and it makes after school time difficult if we have anything we need to do. 

So if you are my friend or my family and I never am able to make/keep plans in the evenings, it's not because I don't want to.

Parenting Lauren as she grows up is presenting some different challenges than I expected. I know all kids can be stubborn, etc. But if you're also a parent to a special needs child (or if you know Lauren well) you understand. It's just different. It's a struggle for me to know in the hard moments if her behavior is willful, if it's personality, or if it's a communication barrier showing up. I don't want to undersell her, but sometimes it's like she just doesn't get it. Is that her cognitive impairment coming into play? I know I've said this before, but sometimes it's like her eyes go completely blank and she's in her own world. There's no getting through to her in those moments. It's incredibly frustrating and sad. Lauren is really intelligent and her speech is amazing. But it only gets us so far in the times that she refuses to (or can't?) use her words to communicate with us. These are the times where I don't know how to parent her. I feel like I fail her so hard in those moments but I just don't know what else to do. Sometimes after these episodes she will be remorseful and apologize. Other times it's like she snaps out of it and is back to being sweet. Other times it lasts until bedtime and she wakes up happy.

Sometimes this is really hard. Sometimes I'm jealous of my friends with typical children. I didn't get that opportunity because Ryan's journey has also not been typical. Sometimes I grieve the life I thought I'd have with my kids. When Ryan's in a good place it's so awesome and it just seems so easy, and I live for these moments. When his PANDAS symptoms are at a lull, he's just his normal super quirky self. I know how to parent that way. With Ryan we naturally do some social coaching (Example: Making sure he asks his friends what they're being for Halloween after they ask him. Talking to him before we go to a party or other social situation about what might happen, explaining what will happen, etc.). He likes to know what's happening ahead of time and to follow a set routine. So we can talk ahead of time about a school Halloween parade, let him know who is coming, what will happen afterwards. Once he thought he was getting picked up from school so he went to the office instead of getting on the bus. Then he had to wait until Lauren's bus got to our house before Greg could go get him. He was pretty ticked! I don't really go on Facebook anymore because it can be hard for me to see other families doing things last minute, or going to the apple orchard (it's not that we can't do this, but we have to try to plan out if Lauren will be able to handle it, if it's wheelchair accessible because she can't walk that far, etc) and sometimes Ryan struggles to leave the house if we haven't talked about doing it days in advance.

I don't mean to complain or have a "woe is me" attitude. Because we have a good life! It's just different than the life I thought I'd have and sometimes I still grieve that life.

This is Lauren during one of those times she was mad at mama for an unknown reason. She didn't want me, didn't want clothes, and just wanted to be alone.

Perspective

Today we had the pleasure of watching my 6 year old nephew play hockey. It's super fun to watch kids that age play any sport, and the best part is that my nephew is actually really good! My dad, brother in law, myself, my two kids, my nephew, and my niece all were there to cheer him on. Well, I'm pretty sure the kids were in it for the snacks. Lauren did really great! She didn't run away from me once, I only had to steer her by the shoulders a couple of times (she gets really overwhelmed in crowds and kind of shuts down/has no awareness of her surroundings. When that happens, she generally just weaves through crowds to get out of them while I yell her name and pray she doesn't get trampled. It's just as fun as it sounds.), and all the kids cheered for their cousin/brother!

Afterward there was a couple of bounce house type things. One was two slides with a "ladder" in the middle and one was kind of an obstacle course. All the kids did all of them, including Lauren. She climbed up the ladder part TWICE! I was shocked, I didn't think she'd have the stamina/ability to do it. She and I had to leave early because she got super tired and tried to sleep in the obstacle course, thus putting herself in danger of being stepped on. My brother in law tried to get her out which resulted in her completely melting down and getting hysterical. So I pulled up my van and then my brother in law wrested her off the ground and into her carseat. My dad helped see us off and kept Ryan so he could stay and play. Have you ever wrestled a 65lb Gumby? I don't recommend it unless you have to.

In the past, that kind of thing with Lauren would've made me so sad and overwhelmed and ruined my whole day. Instead, today I was able to see it for what it was. 10 minutes of disaster in an otherwise awesome day. She played appropriately with her cousins. She was polite and shared her snacks. She had so much fun in the bounce houses. She was really excited to go to hockey and wants to go again.

She's been doing really well in school, loves going to the gen ed class every day, and seems to be making friends. The school had a Walkathon and she walked with her gen ed class. She brought a book home to read last week and actually read it to us. She is learning great things. Times like that, I think that she really is more alike than different. Then we have moments like the end of hockey today, and I'm like...not so much. But I'm to the point now that it's really okay! I've felt no shame in admitting that grief is not linear and that some days this whole special-needs parenting thing is a tough gig and I do sometime still grieve the life I thought I was going to have. But I'm trying to be more positive and not let a small episode become a big one. I'm so thankful for family that steps in to help without me having to ask. Lauren has so many people on her team, and by default, so do I. I don't know that I'd ever have seen or realized the blessing that brings unless we had Lauren.

Ryan's been doing really well. He was a super good boy at the game. He was minimally anxious, the only struggle for him was deciding what snack to order (this sounds funny, but decision making for him causes major anxiety. I was able to diffuse it and he handled it really well today!).

The plan tomorrow is for my dad, my twin sister, her boys, and Ryan to go ice skating together and then go for a hike through the woods at a park near us.  Ryan's really excited about it!

Diagnosis Day

Sometimes it feels like a lifetime ago, and sometimes it feels like just yesterday.

SEVEN years ago today, we walked into our ultrasound appointment excited to confirm that we were having a baby girl. We walked out devastated, terrified, and anxious. Seven years ago today we found out our baby girl would be born with Down syndrome. We had an incredibly supportive team at U of M when we got the diagnosis and feel so lucky that our experience was as positive as possible. It didn't make it easy news to hear.

Seven years later, I can look back on what a gift we've been given. I don't always love Down syndrome, but I always love our Lauren and wouldn't change anything about her.

Today isn't Lauren's birthday, but it marks a rebirth in me and was the catalyst for so much change in my heart. Today marks the anniversary of my line in the sand, my life's before and after moment. I used to say that I was a different person before this day, and that I didn't know if I liked myself better before or after. Now, seven years later, I can say there have been changes in my life and in my heart that can only be by the grace of God.

I've learned to love more fiercely, believe in the impossible, ask for help when I need it (work in progress), and to see more of the good in this world.

Lauren, you were the child we didn't know we needed and we are so immeasurably blessed to be your family. Happy diagnosis day, baby girl.

Woe is me

This is a boring and whiny post about myself. I just need to get it out.

I had an upper GI scope and a colonoscopy last week. It ruled out the scary stuff, which is great. I have an esophageal ulcer and acid reflux. I started on Pepcid, so I'm hopeful it will help. I am also extremely frustrated because we still have no freaking clue what's up with my GI tract.

Today is a horrible POTS day, I ended up leaving work after only being there for 3 hours. My heart rate has been bouncing between 112-140 and I'm having GI issues again. I'm wondering if my body is still recovering from my colonoscopy prep.

I was obviously dehydrated after prepping for the colonoscopy, and my heart rate was being weird in the morning. I was dizzy and feeling overall crappy (pun not intended). Once they got me in pre-op, I was attached to the monitors and I thought they weren't going to do the scope because of my heart rate variability. Thank God the anesthesia team was familiar with POTS. They gave me a full bag of fluids before the procedure, and another during/after. I was on and off sleepy the whole rest of the day. The next day was a big event at work that was so much fun! I felt mostly okay, I sat down when I needed to. Sunday and Monday were fairly uneventful.

Then today I'm miserable. I am just so freaking frustrated with never feeling well. I feel like I'm too young and too "healthy" to be sick like this. I am fatigued beyond belief, I feel weak, I'm dizzy, my stomach is always upset. I can't do the things I love anymore (long walks, bike rides with Lauren, walking around Target) because chances are I'm not going to be able to finish and once I get started I don't have a choice. I tried two different medications that my cardiologist recommended. I started the first one and felt even more dizzy and had stomach pain. I added the second one to see if maybe it would help, but I was even more dizzy, extremely weak, my blood pressure seemed even lower, and I could barely function. I called my doctor yesterday to tell him that the meds were a no go, and he's having me come in tomorrow to better document my symptoms and hopefully try something else.

I feel beaten down today. I know plenty of people have it way worse than I do. But I am miserable. This is my current view, with my feet up, trying to feel even a little bit better.

Casting Vision

I had the amazing opportunity to go on a retreat this past weekend with the Down Syndrome Diagnosis Network, or DSDN. It was in Phoenix, AZ this year and 375 moms were present!

There were keynote speakers, breakout sessions, karaoke, a silent auction, and tons of friendships forged. I learned a ton. I am honored to serve as part of the medical outreach team. We will be focusing on speaking with OB/GYN providers on delivering a Down syndrome diagnosis, both prenatally and after birth. We're a pro-information organizations that will work to make sure that providers have updated and accurate information to give to new families at the time of diagnosis. We had a beautiful prenatal diagnosis story with very positive providers surrounding us. I wish everyone had that experience, but I know a lot of people don't. I'm hoping I can play a small part in changing that.

I also attended a breakout session by the executive director of Ruby's Rainbow, a nonprofit organization that provides scholarships for adults with Down syndrome to attend post-secondary (aka college) programs. I was honestly blown away. Liz Plachta is the executive director and co-founder, and she was extremely knowledgeable about the programs that exist all over the country. There are community college programs. There are a lot of programs for students who will live on campus ranging from 3 semesters to 4 full years. She talked about casting vision and believing that college is something attainable for people with Down syndrome. Attainable for Lauren.

In all honesty, we baby Lauren and don't expect as much out of her as we could and should. In a lot of ways she still feels like toddler, so we treat her as such. If she would lay on the floor somewhere and pretend to go to sleep (and sometimes actually falling asleep) we'd let her. If she wanted to eat from our plates at dinner, we'd let her. My list goes on and on. But taking part in Liz's breakout session was a hug eye opener for me. It was truly mind blowing. I am raising an independent, determined, and capable girl who very well may be a young woman attending college some day. And we all know that "some day" comes a whole lot sooner than we realize.  Even since I've been home (I flew in Sunday), I've tried harder to expect more from Lauren. She flopped on the floor Monday while Ryan was in an after-school computer class. I made her get up. Today during dinner she started eating my mom's food while we prepared her plate. I made her stop and wait for her own meal. Obviously all children have challenges, and even a year ago, these thing would not be near as possible as they are now. And every child is different. But these are things I know Lauren CAN do, we just don't encourage her to do them. We've been talking about her being a big girl now that she's in 1st grade. She's been very independent at school and her teacher has remarked on it more than once. Tonight at bedtime she put on her own pull-up completely unprompted.

It was truly like my whole world expanded this weekend. We need to start saving for college for her! This is something that when we received our prenatal diagnosis, I grieved this part of parenthood. I grieved because I'd never get to send her off to college, she'd never live independently. And I'm now realizing that these things are completely realistic goals for her, she's just going to need support to accomplish these goals.

I am casting vision over her life the same way I'm doing for Ryan, maybe even moreso. It's going to take some intentionality our part as her parents. It's most definitely going to take advocacy on my part, and in the future, some significant self advocacy. There will be some major hurdles along the way, and we can prepare for those and tackle those challenges when we reach them. But I can now say, and believe it with my whole heart, that Lauren will go to college. How awesome is that?!

https://rubysrainbow.org
https://thinkcollege.net/

Making Time for Mom - POTS edition

I've posted a couple of times previously alluding to some health struggles I've personally been facing. For the last couple of months, I've not been feeling well. I have periods of time where I am extremely short of breath, dizzy, and my heart rate becomes pretty elevated (in the 140's). I've also been so fatigued that it sometime feels like I'm swimming through Jello. I've also had some significant GI problems for the past 18 months-2years that initially got better with a gluten free diet in June 2017. Symptoms have slowly returned and remain intermittent. And either in addition to that, or perhaps caused by it, I've lost over 35lb in the past year and a half. Sounds great, right? Weight loss you don't have to try for? Except I weigh less than I did in high school, my hair feels like it's thinning in the front, and there is no way I'm maintaining my nutrition with this kind of weight loss. I was never overweight to begin with. I now weigh 110lb at 5'3". Not too thin, my BMI is still normal. But I've lost my curves and my clothes are hanging on me. Well meaning people keep exclaiming over my weight loss, asking if I'm okay, tell me to eat a cheeseburger. I'm 100% not offended, but sometimes it makes me feel awkward and I'd love to gain back a good 15lb to feel healthier!

I saw a GI doctor and am scheduled for an upper GI scope and a colonoscopy next month. She was almost apologetic for needing to do a colonoscopy, but said she really has to because of the unintended weight loss. I was like, "Yes! Please! Lets do it now! (kidding!)" But seriously, I'm all about doing something to find out what's making me so sick. She's going to biopsy for celiac, EOE, look for indications of Crohn's or ulcerative colitis. Obviously rule out terrifying things that can cause unintended weight loss.

I also saw a cardiologist. He ordered an echo, a holter monitor, and a tilt table test. Results? I have POTS. Postural Orthostatic Tachycardia Syndrome. Basically, when I stand up, my heart rate shoots up too quickly for my body to compensate and I get dizzy, short of breath, and sometimes have what they call pre-syncopal events. My vision goes completely black, my head rushes, and I have to hold onto something so I don't fall over/pass out. This has actually been happening on and off for years. 10 years ago I sought treatment and the physicians assistant I was seeing was amazing. He started me on a beta blocker and it did help with my heart rate. Unfortunately, my blood pressure was way too low to continue the medication. I saw a cardiologist at that time who said everything was fine, and I was basically too young to be sick. About 5-6 years ago, when I was working in the hospital, I had some episodes of dizziness and pre-syncopal events. I saw a cardiologist at that time who told me I was too healthy to be sick and that it was probably anxiety.

And you know what? I DO have anxiety. Show me a special needs mom who doesn't. But I knew it was not responsible for my symptoms. It's extremely discouraging to have multiple medical professionals discount and invalidate your symptoms. It made me feel like maybe I was a hypochondriac. This time though, has been different. It's really disrupting how I live my life. I feel like I'm a crappy coworker lately because I'm sometimes to dizzy to do my whole job. I often can't take my kids to the park because I know I'm not going to be able to stand up the whole time, or I'm going to get short of breath and feel like I might pass out. Or I'm not going to make it through the whole grocery store without feeling sick. Or my GI symptoms might act up and I won't be close enough to a bathroom. I've had vacations ruined because I was too dizzy and/or sick to do anything for any length of time. We were shopping on vacation this summer and my mom had to drive me back because I was really dizzy and my heart rate was hovering around 130. Lauren and I haven't been able to take as many bike rides as we like because I can't make it around the block. I miss being able to do the things I really want to do. If I overdo it one day, I pay for it the next and it's really not always worth it.

So, now I'm diagnosed with POTS. I really like my cardiologist. He started me on two different medications. Midordine, to try to increase my blood pressure. And Florinef, to try to increase my blood plasma volume. My cardiologist said that my body behaves as if it's extremely dehydrated. I'm supposed to drink a ton of water and greatly increase my salt intake (life dream, I love salt). I go back in 6 weeks and he's hoping my blood pressure is high enough to add a beta blocker, if I need it, to bring my heart rate down.

I'm trying to be kind to myself. I restarted therapy to help me cope with my life stress that never ends. Greg's helping out more at home with things I really just can't do (like carry 60lb Lauren up the stairs most days). I'm really trying not to push myself. We were at the park recently, the kids were playing, and I sat down in Lauren's wheelchair because I felt dizzy. I got a couple strange looks that bothered me at first, but then realized I truly give no F's about what someone else thinks about me. I posted a link below from Dysautonomia International about POTS if you want to learn more!

http://www.dysautonomiainternational.org/page.php?ID=30

Is it fall yet?

Summer is coming to an end and I am really excited for fall to start! I love the season - the rustle of the leaves on the sidewalk and the chilly, crisp air. I LOVE fall. I almost bought some potted mums and a hay bale today while I was grocery shopping, but then I remembered that it's still August and I need to calm down. I also can't wait for my kids to go back to school. I feel like my kids, along with most, thrive with a schedule and summer time is always wild here. The kids are so busy with therapy, camps (for Ryan), traveling. I know things will get busier once school starts, but in some ways I feel like it calms down a little bit because we know what to expect.

Lauren saw her cardiologist today for her yearly visit. Her doctor told me to go home and read Psalm 100, a thanksgiving Psalm about God's goodness. He said her repair is one of the best he's seen in his 42 year career and the results couldn't be better. When I think back to how sick Lauren was during the weeks surround her surgery I can hardly believe she's really doing so well.

Ryan's in a computer camp and really liking it! I signed him for for an engineering class locally that starts next month, he's really excited about it! There are different class options offered every month, so he already found three of them he wants to do for September, October, and November. I'm so glad it seems like we've tapped into something he really likes! Some kids like sports, my kid likes computers. He seems to have really found a niche and something he can excel in!

We've been going up north when we can on weekends. We'll go this weekend, but staying home Labor Day weekend because it's "moving up" week at church and Ryan really doesn't want to miss it.

I'm working through my health issues, having good days and bad days. I had some cardiac testing done and was found to have POTS. I follow up with cardiology next week. I also saw a GI doctor and am having some testing done next month. Hopefully I'm well on my way to being on the mend!

This is us

We've been having a pretty good summer! August is our busiest month it seems, so I'm pretty ready for fall and school to start. I love my kids...but I miss my Wednesdays to myself.

Ryan has been doing AMAZING! We treated him for a PANDAS flare and he's totally back to baseline. He was a bit snippy with me yesterday and today, and apologized unprompted both times. The funny thing is that now that he's back to his old self, his little quirks are back in full force. I love it because that's how we know he's happy. He toe walks, makes noises all the time, and is big into physical affection. He actually cuddled me today while we were at OT waiting for him to get called back. It was awesome!! OT is working on handwriting and core strength. He's currently in a day camp, Minecraft Camp, at our local rec center. So he's learning to to build a Minecraft server, something with LAN, coding, and other computer words that mean nothing to me. But he loves it! He called me after the first day and said, "Mom! I wasn't nervous at all and I made friends with everybody!!!" The excitement in his voice made me tear up. I found out he's the oldest kid in the class by a year or two, and I was hoping for more same aged peer interactions, but I'll take it! He has a week off and then goes to another computer camp the following week. I love that we've tapped an interest for him! We've tried every sport under the sun (gymnastics, swimming, hockey, soccer, baseball) and he just does not do well in team sports. He is starting to try golf with my dad and he really likes it. I've noticed a little more struggles with eye contact with adults lately, so that's taking a little social coaching, but nothing we can't handle. He has a good friend in our neighborhood that really seems to draw Ryan out of his shell, so I am super hoping they get put in the same class in the fall. At his school, every grade has 4 classrooms, so it's only a 25% chance. He's still a giant and is probably around 4'8" tall and right around 100lb. I bought him some school clothes today and I tried on a shirt of his that we might have to fight over, LOL. His feet are officially bigger than mine now (and I wear a women's size 8!)

Lauren has been awesome. She's walking so well, but her gait is terrible. She has the cutest little walk on the entire planet, but it's hard for her to get from point A to point B. She's wearing her brace probably 75% of the day while she's awake. We're hoping she might lose some weight now that's she's walking so much better, after not walking for 3 months. It goes without saying, obviously we view her weight from a health standpoint only. I am going to set up an appointment with a dietician to discuss portion size, food choices, etc. She'll eat pretty much anything but she's been eating adult man sized portions since she was about 10 months old so I admit I'm not really sure how much I'm supposed to be feeding her. She doesn't have a "full sensor" and would legit eat 24/7 if I let her. Today I was successful with chicken breast and veggies, along with salad for dinner. She had grapes for a bedtime snack. She asked for chips, but I said no. I'm so proud of myself! This is hard for me! She's in speech therapy, occupational therapy, and physical therapy each once per week for the summer. Hence why we are so busy! I was able to coordinate her PT and speech on the same day, and Ryan gets OT while she's getting speech. This will not be a surprise to anyone who knows her, but she loves speech therapy and hates physical therapy. We had to see hem/onc last week because her recent bloodwork was off enough to warrant a consult. Can we stay stressful?! We LOVED the doctor and she said, "I love her, but I don't need to be her doctor." Best words ever. Behaviorally she's been doing okay. We increased her thyroid medicine recently due to her labs, and her energy has majorly increased. Along with that, she's a little more impulsive and has started pinching and scratching again. She even bit my stomach on day. She really hasn't done that it months, so we're weighing the pros/cons of increasing her Tenex. Tenex can cause weight gain. But we need her behavior controlled, especially as school starts up. I think I've been pretty transparent about her behavior struggles, and I feel like we have a delicate balance of her amazing personality shining through vs her ability to be behaviorally successful in her community (home, school, church). She's been bolting away again, which might just be because it doesn't hurt to walk anymore. We were almost spoiled by 3 months of her not walking because at least we didn't have to worry about her eloping. Tonight my sister and I took her to the park and she kept trying to "climb" down a part of the park that is actually a straight drop from the very top of the equipment, probably close to 15 feet high. I tried to physically block it, which made her more angry. My sister ended up sweet talking her down. But verbally she has been SO NICE! She tells me she loves me about 50 times a day. She's nice to her brother. She gave Monte a giant hug today for not eating her dinner while she went potty. Overall, things with her are pretty dang great.

I've been dealing with health challenges myself. I've lost 30-35lb in the past year, most of it in the last 6 months and totally un-intended. I now weigh 112lb, which is less than I did when we got married 10 years ago. I have some pretty significant GI issues that initially got better with a gluten free diet, now it's hit or miss. I've been having shortness of breath with minimal activity, dizzy spells and periods of significantly elevated heart rate (as high as 144 bpm). The fatigue is unreal, but I've been pushing through it as best as I can. As a result, I've earned myself a GI consult (later this month) and a cardiologist. So far with cardiology I've had a visit, an EKG, and I currently have a holter monitor in place. I go next week for a tilt table test, the following week for an echo, the following week for another follow up. And I'm following closely with my primary care doctor. It's been extremely frustrating to just plain not feel good. It impacts my ability to care for my kids and enjoy life. We're currently thinking Crohn's vs Celiac vs POTS or maybe even something completely different. It's really hard feeling like I'm being a bad wife, mom, and friend but I really am doing the best I can. The best way I can say it, and pardon my french, is that currently I give no fucks. I don't wear makeup other than to work. If by rare chance I'm at home with nothing to do, I take a nap if I'm tired or I go to bed at 9pm. My house is often a disaster because it's one more thing I have to fit in at the end of the day and sometimes I just can't. I'm snacking constantly to try to stop losing weight. Gluten free snacks are not as as exciting, but I have found some great things to eat that are a little more calorie dense. If I feel like I can't physically or emotionally do something I just say no. I've mostly been doing what I have to do for my kids, my family, and myself, and that's about it. My parents help a lot when they can. Greg's parents have been lifesavers when we're up north and I can't parent the way I should. Greg has been amazingly supportive through this which I appreciate more than I can say. He's working 6-7 days a week and still being an amazing partner at home.

Overall it's been a pretty great summer and I think we've made a lot of fun memories. My hand is getting better, but my nail is still weird, the tip of my finger is numb, and I have random days of pain. I'm excited for the fall to get back into our normal family routine!

Happiness

Lauren has been so incredibly happy! That's really the best way I can describe her. She's agreeable, she's eager to please, she is attentive and wants to be part of things, she's singing a lot, she smiles all the time, she doles out affection like it's her job, she volunteers "I love you mommy" about 25 times a day.

This. Is Amazing.

Her cast came off on Monday. Funny story there, we were driving home on Sunday, on the tail end of a several hour drive. All of the sudden she told me she put a water bottle cap down her cast. She has never done that! She was casted a full 8 weeks after surgery. And almost a full 4 since her fracture in June. Not even once! We got home, felt around, couldn't locate it. She insisted it was there. Greg wasn't so sure it was. I wasn't sure either. I texted the doctor I work for to ask if it could (please, God) wait until Monday morning, thankfully she said yes. I felt like a dummy calling her surgeon and saying I wasn't sure if there was anything in her cast, but there might be. He had us come in just in case since it was just a few days early. I was at work. My mom sent me a text of her adorable leg cast-free...and the bottle cap right next to her! We should've known because as a general rule she doesn't lie. She might answer a question with a lie by not admitting to something, but to come up with a lie all on her own to tell us? I've not heard her do it yet.

She's walking around like a champ. She's back in the brace she got when her first cast came off. She loves it now that it's summer time so she can showcase her butterfly brace AND her rainbow knee socks.

Fun updates and bragging on my kids

Lauren got her cast put on Thursday June 14th. Since a giant cast is old hat for her, she's doing really well! She's even walking on it, which terrified me but her orthopedic surgeon said it's totally ok. Greg's going to buy a cast shoe tomorrow so she doesn't completely damage the cast by walking.

We went up north as a family (extended family! Almost 40 of us gather yearly for a week long vacation known as Wancha Week (my maiden name is Wancha). It's pretty much amazing. It's Saturday-Saturday. We had Lauren stay until Monday and then Greg's parents took her through Friday. We left Friday night to go back home so we could wake up in our own beds. I missed Lauren so much! We had planned to stay 2 nights in our camper, but went home after just one so we could go to church in the morning.

Lauren usually doesn't stay the whole time because she gets people'd out pretty quickly and doesn't really tolerate it, and she's really freaking hard sometimes. Generally we worry about elopement but we didn't have to this time (silver lining to a broken leg) Generally that means Greg and I also leave and my parents and my twin sister are watching Ryan for the rest of the trip. This year, Greg's parents offered to take Lauren so we could spend some time with Ryan and my extended family.  It was so great! Ryan chose to spend time with us, even going grocery shopping with us to spend time together. He swam for hours at a time in the lake. He even went tubing behind the boat!!! This is something he would've never been able to due last year due to his anxiety. We are so proud of him

Ryan had his usually funny Ryan-isms

My aunt: Ryan, are you digging to China?
Ryan: I'm pretty sure that's a myth (totally deadpan)

My other aunt: Ryan, come help me with this (shining a flashlight on a raccoon)
Ryan: I'm not sure I'm comfortable with this!

(Ryan's half birthday was while we were on the trip)
Ryan: Ahhh, now this is how you spend a half birthday!

We were really just reminded of what a completely amazing kid we have. He was polite, he played really well with all of the other kids (my niece, nephews, and cousins' kids). He played a domino game with extended family members and I wasn't even present. He later played with one of my aunts just the two of them. He swam a ton, was really fearless. He is basically the best kid ever and I'm guilty of forgetting that a lot. He's been pretty hyperactive and wild in the evenings sometimes since we started PANDAS treatment. We'd waaayyyy rather have that than his anxiety and resulting behavior issues he had before! It's always a reminder to us of how far he's come. Even my sister noticed (she takes him a lot of places along with her boys when it's something Lauren can't do right now) a significant decrease in his social anxiety. He has been introducing himself to other kids on the playground!!!

Lauren has been a blast. She is so sweet. Since Sunday she keeps telling me "Mommy, you're so kind". It leads me to believe they must've talked about kindness at church this week. She's been super lick-y and now licks faces when she's happy. It's so gross and we're trying to break her of it! But of course it's also totally adorable. Tonight she tried to out-stubborn me by refusing to put on pajamas and demanding to watch YouTube. So instead she didn't get rocked at bedtime, nobody laid with her, and daddy did bed time. She's obsessed with me so this is the ultimate punishment for her. She told me at bedtime when I got a hug, "I promise tomorrow I will listen". And you know what? She will! This only happens once in a great while, but she remembers and really does correct her behavior. She needs tons of positive reinforcement for things to sink in, so tomorrow I will thank her for being so sweet and listening. She had a speech therapy evaluation today to get some therapy over the summer. We usually do a comprehensive program over the summer but she aged out. So she will be getting speech and OT. Our speech goals for her are articulation (though a friend we saw in the lobby today said she understood everything Lauren said, which made me so happy) and reciprocal conversation skills. Truly I never expected her to speak so well and especially not at this age. It's truly nothing we did, it's just the luck of the draw and we came out pretty dang good. The trade-off is her fine motor skills, which are really poor and why we'll do some occupational therapy. And her gross motor skills weren't great before surgery due to her foot and resulting gait issue. And they weren't great after surgery because she only walked for like 2 weeks before breaking her leg. So we'll probably try for some physical therapy once her cast comes off (She was actually supposed to start PT this week, too but the broken leg stopped that).

I've been having some weird health issues that are a little bit GI, a little bit neurological, and some significant unintended weight loss. Greg has been so amazing with all of this and not getting frustrated (at least outwardly) when I'm unable to do normal things an adult has to do. I'm so thankful he's my other half. I'm having bloodwork done tomorrow to get started on the right track for a plan to get healthy! I'd appreciate prayers if you can spare them.

I don't currently have a Facebook as I've deactivated it for the forseeable future. I still have Facebook Messanger on my phone and am always available by email (jackieweldon.jw@gmail.com).

This right here, folks, is a tibia fracture. Lauren fractured her leg today at school. And yes, it was the left leg, the one she just had surgery on and just started bearing weight with. She's in a lot of pain, she's getting a walking cast tomorrow (thank God, I can remove it to bathe her). She can't stand or walk. She's allowed to bear weight when she's able, so that's good. But it took WEEKS after her cast came off post-op to convince her it was safe. She is snuggled next to me in my bed right now, because nothing earns you a night with mom more than a broken leg. She just told me, Mommy, I so scared at the doctor." That breaks my heart! Please pray she heals quickly and that her pain gets better.

Worth it

The kids only have one week left of school!!! YAY! I say that with only the tiniest bit of sarcasm. I worry that the summer will be full of screen time, but I know our summer babysitter is going to do great things with them. And Lauren will be getting PT, OT, and Speech therapy this summer. It will be busy and I'm sure it will fly by!

The day after school lets out we leave for our annual Wancha Week up north with my dad's side of the family. Around 30 or so of us go up north for a week. It's full of fun, boating, swimming, playing outside, and getting dirty. (No swimming for me, my finger is not healed.) It's Ryan's favorite time of the whole year. Myself, my sisters, and our cousins had kids right around the same time so there are tons of kids to play with. It's when Ryan is his happiest and we always look forward to it. Generally, Lauren can't tolerate a whole week so Greg and I leave early with her and Ryan stays back under the watchful eye of my entire family. This year we're going to see how long she can make it, but Greg's parents have offered to let us drop Lauren off to them (they're also up north, just about 2 hours from where we will be) if it's too much for her. Lauren loves her family, but gets pretty easily overwhelmed. When it becomes not at all fun for Greg and I, we generally call it quits. It becomes easier at home to keep her happy and entertained. And of course there's always the fear of elopement when we're not in place we've Lauren-proofed. But we're hopeful we can stay longer this time! Last year I think we made it 2 nights out of 7, so if we get 2 or 3 nights we'll call it a win! Sometimes it's extremely discouraging because it's times like that, when we have to leave a really fun family function, that we see just how different our parenting journey is than other families. My extended family is amazing, so understanding, and they are all willing to love Lauren on her terms (which often means at a distance!). We never feel judged for the times we can't stay at a function. Sometimes my life feels like it's all special needs all the time (since I work for a developmental pediatrician), but I also feel like God has called me to this life. The best things are worth both the mountains and the valleys.

The kids both had Field Day this week! This was my first week back to work, (I love my coworkers for making it as easy and gentle on my hand as possible!) and Greg's now on midnights so he's sleeping during the day. So my mom went to both kids' field day! They were on different days at different schools, and she was there for both of them. We love how much our families love our kids.

Ryan and one of his best friends

Lauren and her best friend in the whole world (other than mommy)

Today we officially joined our church! We spent several years at a couple different churches and it just never felt right to take the next step to become members. I know I've written before about the special needs ministry at our church. Today was celebration Sunday and was a review of great things that happened in the church. And to open service, the group for teenagers with developmental disabilities sang a song for the congregation. It warms my heart to think of Lauren, 10 years from now, having friends she can relate to and share life with in the church. It's what I dream of for both of my kids, really.

And last, but certainly not least, Ryan was student of the month!!! He was surprised at an assembly at school this past Monday. The character trait this month was kindness, so this was especially close to my heart. If I teach my children nothing else, I want them to know how important it is to be kind to others. You don't have to agree with anything a person does to show them kindness. The principal called later in the prior week to tell us, and it was such a hard secret to keep!! All the kids come walking into the gym looking for their parents, because they know if they see their parents, they are getting an award. Ryan's mouth dropped open! It was awesome. Ryan is really a child that craves recognition and praise, so we knew it would be really meaningful for him to be chosen. Later that week I surprised him with a frame for his award and a t-shirt that says "Best Kid Ever". He was so happy! I was so thankful that even after more than two weeks off of work, they let me come in late on my first day back so I wouldn't miss the assembly.

Another not fun update

My hand still hurts, but I'm back at work. It's nice to be back and my amazing coworkers are really letting me take it easy and do things I'm able.

Lauren had her follow up with the orthopedic surgeon today. I was concerned about her gait. She has a really wide stance and her left foot is turned out quite a bit. It turns out this won't likely get a whole lot better. We're going to start physical therapy ASAP. Surgery could correct the turning out of her foot, but he doesn't recommend it now and we wouldn't do it anyway. I'm feeling pretty discouraged! Lauren, however, has been doing pretty awesome. We ditched the wheelchair at school. She's still using it for community outings. We should be getting a new adaptive stroller, just awaiting insurance approval and then for it to be ordered and come in. I can't wait! Her current adaptive stroller we got right before she turned 3, so it's really small for her. The foot plates are so high up, even on the lowest setting, that I feel like her knees reach her ears!

It happened again

I've been home for the last almost 2 weeks since my finger injury. Lauren's been up really early since the time change. She used to wake up and play in her bed or her bedroom. Lately she's taken to going downstairs to the main floor and playing Barbies. Totally fine! We've been so proud of her newfound independence and that she's getting around so well. When Greg left for work this morning she had arranged her favorite stuffed animals to watch her play with her Barbie camper and doll house.

When Ryan and I woke up about 30 minutes later, I went downstairs to get the day started. I see her Ba Lamby, Baby Lamby,  Lamby 2, Froggie, and Froggie in a little group, set up to watch the Barbies play. But Lauren wasn't in the family room. So I called for her, thinking she was hiding in the living room. Nope. Then I ran upstairs to see if maybe she was in her room because sometimes she gets herself dressed now. Nope! I yell for Ryan to wake up and tell him I think Lauren's not in the house. I'm yelling her name, checking everywhere. Then I noticed the front door is just barely open. Not even open, really. Just not all the way shut. 

I found her in her pajamas, with her shoes on the wrong feet, in the front yard. She told me she wanted to drive my car. (I'd left it unlocked, which could've been disastrous as it was in the 90's here today. Thankfully this was at 7:30am and it wasn't hot yet. Now I will make sure I'm fanatical about locking the car doors.) I yelled at her, I sat down on the ground and hugged her and I told her that she cannot leave the house without a grown up. That she could get hurt, lost, or be afraid. She looked back at me with a totally blank look, like she didn't even realize she was somewhere she shouldn't be.

We have talked about this with her over, and over, and over again. And then again some more. She can tell us that she won't leave the house. She can tell us that at the grocery store, she stays with mom. She can tell us, "I don't run away from mom and dad". Her elopement and impulse control has been leagues better since we started medication in the fall. This was our first elopement (from home) since we got Monte over a year ago. This morning she had let Monte outside in the back yard. I think he'd have alerted me if he was inside. 

This is the reality of parenting Lauren. Some days it's like she doesn't even have special needs. A lot of times I just feel like I've had a three year old for a really freaking long time. She speaks really well, we've always been fortunate that speech is a huge strength for her.  So I think sometimes we forget that speaking and understanding are not the same. She scared the crap out of us today. My husband is installing a video doorbell system with motion sensors on the front porch as we speak. It will alert both of our phones if there is motion on our front porch. We're on opposite shifts and somebody is almost always sleeping at our house, so having a tall interior lock doesn't really work, because there's nobody awake to open it when the other returns home from work. At our old house we had magnet alarms installed that would sound (loudly!) if a door opened. We can't currently do that either because of said opposite work schedules. I bought a hook and eye latch for the top of our door, and might just make myself wake up to let Greg in on weekends (on weekdays I'm up and gone before he gets home). I hate that this keeps happening.

Lauren is the most trusting child ever. She would go with anyone. Her life, her world, is unicorns and rainbows. I love that innocence about her, it's like an inner beauty that I wish I could at least half possess. But it makes her really hard to keep safe sometimes and it terrifies me. She calls me honey and sweetie and sweetheart as part of her regular way of addressing me. She still lets me rock her at bedtime every night while she peppers my face and neck with kisses and tells me she loves me. There's not a soul on this planet who loves and trusts like she does.

So now we get more vigilant. We talk about not going outside without a grownup a million more times. We install locks and security systems. And we hope it sinks in or that we can outsmart her, hopefully both.

Not fun update

Last week I had a hand injury and hand an open fracture (bone visible) to one of my fingers. And it's my dominant hand. I'm out of work for 3 weeks (or more, I follow up again with the hand surgeon next week). I'm in a ton of pain and I can't even really care for Lauren on my own. I can't pick her up, I can't ride my bike because I can't use the hand break well enough...so this pretty much sucks! Blog updates will likely be few and far between for a little while. Lauren's been taking some independent steps (yay!!!) but is far from independent. Luckily my parents and Greg's parents, and my sister are all helping!

Biking!

This bike is amazing!!!

We have been having so much fun. Ryan loves to get to be the driver. I love being able to take Lauren on bike rides again. We even took Monte with us and had him job alongside us, but that needs some practice. I'm going to practice doing this without Lauren a couple times so I can really work with Monte on heeling next to the bike.

We got Ryan a kids FitBit and he loves it! It's been really fun for him to see how many steps he gets. He get a lot! We challenged him with a sticker chart. If he meets his goal (8,000 steps) five out of 7 days of the week, we can get ice cream on Sunday. If he meets his weekly goal all month he can pick out a small Lego set. So far, incentivizing exercise is going well! Tuesday he wasn't going to meet his goal, so I suggested just walking to the corner and back since he was so close. Instead, we walked the block which is just over a mile!

Lauren's still not walking. She will take steps if she's holding onto furniture, going from one piece to another. Sometimes. She is now getting around her classroom pretty well by scooting and cruising on furniture. She's still pretty heavily limping, so that's kind of a bummer. We're getting there! I've been trying to get her to use her tricycle (with a push handle for me to steer/push) just to get her knee moving. She's doing pretty good with it! It's just taking a little longer than I expected. We leave for up north in less than a month and I am suuuuper hoping she's walking independently because the place we're going is not very accessible. Overall, things are going well and she's been super sweet and happy lately. If she's happy, I'm happy!

Great things ahead!

Lauren is doing awesome and is recovering so nicely! She is willing to take a few steps at a time, heavily supported by both hands held. She is not yet able to put all of her weight on her left foot, but she can stand unsupported for a few seconds!!! Over the weekend and today she wanted to ride her tricycle. We tried her newer pink tricycle and she was really unable to propel/steer independently. So we used the older red one with a handle for me to steer/push. She did amazing!!! She did the pedaling and even steered for most of it. I'm so proud of her.

That being said, this is the first year Lauren can't fit in my baby bike seat (though last year was shaky and unsteady if I'm honest). It has been one of our favorite spring/summer/fall traditions, to ride around while she talks to me, talks to neighbors, points out animals, colors, etc. In short, it's her happy place. I've been sad to have to end that stage of our lives. Until we ordered this bad boy! It should arrive next week and will have to be put together. The company suggests a bike shop put it together...but Greg's going to give it a try. The passenger weight limit is 135lb so we should be able to use it for many, many years. Lauren is so super excited and even picked out a new helmet so she would be prepared! Ryan is really working on learning to ride a two wheel bike this summer so hopefully family bike rides are in our near future!

Today I got her to agree to homework. Generally, we don't do homework. She doesn't have the attention span OR the desire to do it. That makes it nearly impossible to get done and definitely impossible to do without arguing. She did two pages tonight! She did the math, told me her answer, and I wrote the answer in highlighter. Then she traced over it with pencil. How amazing is this?! Yes, I suck at drawing frogs. LOL.

Also, today Greg told me Lauren got herself up the stairs, used the toilet in our bedroom independently, got herself back downstairs, and then got herself into the basement to play. This is huge!!! Not only physically, though I know she butt-scooted for all of it. But the fact that she was able to problem solve what she wanted, and was willing to do this independently was huge for her. We're really working on getting her to do things independently when she is capable of doing them. She really does just seem so much happier overall since her surgery.

Ryan went for another mile long walk with me tonight which makes it I think 3-4 times in the last week. He has a friend coming home with him from school tomorrow, so he is really excited about that. He has a Spring Fling at school later this week and in the past his anxiety has really prevented us from going/staying. This is the first year he's really excited about it!

A little bit like waiting for the other shoe to drop

Things are going amazing with both kids right now at the same time. I honestly don't think this has ever happened before. It feels a little bit like waiting for the other she to drop, but I'm trying to just enjoy it.

Ryan had an awesome weekend. Thursday was his 2nd grade music concert and art fair. He participated!!!! He actually sang part of the time and only got irritated a couple times when the kids on either side were touching his arms. And it wasn't even like anyone else would realize he was irritated, he just kept crossing his arms and sneakily giving death glares to his neighbors. LOL. Then afterward we walked around and looked at the art projects, he gave us a tour of the school. HE SAID HI TO HIS FRIENDS!!! He even said, "You guys! Do you see that I'm talking to my friends? I didn't do this before!" It's so wonderful that he even realizes how well he's doing. We went to church today (zero arguing) and then he spent the vast majority of the day outside doing yard work with Greg. I went for a walk with Monte around 7, asked Ryan to come, and he declined. I got about 4 houses down and he ran and caught up with me. We walked for a mile! This may seem like no big deal, but remember that as recently as 3 months ago he was a boy who could barely leave the house. He couldn't walk more than half a block, if that, without complaining that his legs hurt. He was so happy on our walk, jumping around, talking about when he grows up, and just being a regular kid. I feel like PANDAS stole him from us for a solid two years, so this is something I hope I never take for granted. It just amazes me when he's able and willing to do every day kid stuff like go for a walk and go to church without a meltdown. On the same day, no less! My amazing friend and coworker came over to fix Lauren's new AFO brace (he's an orthotist) and Ryan happily said, "Hi Mr. George!" He had toast (including crust) with peanut butter for dinner.

Lauren got her cast off on Thursday!!! Let me say it again, LAUREN'S CAST IS OFF!!!!! She was terrified to take a bath (so strange) but luckily Grandma Pam bribed her with a Disney princess fishing set to play with in the tub. She also had the "pins" taken out on Thursday. The surgeon kept calling them pins. Uhhh, they were GIANT screws that required a power drill to remove, in office. Lauren is of course amazing and did great. We used her noise canceling headphones for the cast saw and the drill. I really don't think it hurt her so much as it scared her because of the sound. I was thinking she'd be able to jump right back into walking. Apparently not! They said she'd be almost kind of like a baby again, first she'd crawl, then pull to a stand, then take some steps. So far we're 3 days out and she's crawling. I can get her to stand on her left foot (with the brace on) but she's also holding onto something with both hands and I can't really say she's bearing weight. She feels VERY unsteady on her feet and I think this is going to be a slow grow for her. She and I went to the store today to buy shoes and ended up with 2 pairs of shoes, an 11 for the right foot and a 12.5 for the left to accommodate her brace. They're purple and light up, so at least I got a lot of bang for my buck. Shoes are not cheap, especially when you have to buy 2 pairs for 1 set of feet! Any time I try to encourage her to take a step or stand up she says, "I'm nervous!" so we're going super slow. It looks like her wheelchair will be sticking around. I'm not sure how long she will wear her brace for, but she's supposed to wear it all the time. We had it on/off a lot this weekend so her leg can get used to it. Luckily she mostly wears leggings so the brace fits right over them. It has butterflies on it and she loves it! She was so excited to go to church this morning and tell her teacher about her cast coming off! At Ryan's music concert on Thursday one of his friends kept coming up to try to say hi to Lauren, and Lauren really wasn't having any of it. I finally coerced her into saying hi and she offered a hug! It was really sweet, especially because the little girl didn't give up and tried multiple times to engage Lauren in conversation.

So yeah, things are amazing here. Lauren and I went shoe shopping AND to Meijer today. She did elope from me at Meijer, but not impulsively just because she was bored while I looked at socks. And she was in her wheelchair and couldn't get too far away from me anyways. Otherwise, she was amazing, hence us going to places in one outing. She really must've been in more pain that we realized because her general demeanor seems a lot nicer. I feel like I have my sweet son back and it feels so wonderful. Life is good here!

Documenting a hilarious weekend

Ah, Lauren. She has been so hilarious this weekend. She was really tired this morning (she had "a sleepovers"with Grandma Pam and probably didn't do a whole lot of sleeping! She was crying on and off all morning/after church. But then she was great.

We went to the zoo yesterday and she was begging me to let her pet the tiger. She said, "Mommy, he will not bite me! I promise!"

Today at church, one of the volunteers in her room walked in a little late and Lauren said, "Good morning! You look like a princess!"

I took her to Costco to get new glasses. She took FOREVER to decide. While I was working with the employee to get the paperwork done,  Lauren grabbed the mirror and says so loud, "I am so pretty!!!" She then told me I was taking too long and rolled herself away from me. I figure she's a bit harder to kidnap in a wheelchair so I just finished what I was doing 😂

Then she was tired, fell asleep in the car on the way home, and finally we just put her in bed around 6pm. She woke up around 7pm and Greg brought her downstairs to me. She said, "It's morning time?!" Uhhh, negative sleeping beauty.

It was nearing bedtime and I told her not to argue when it was time. She actually bowed and said, "My pleasure!"

Then as I was leaving her room (after attempting to escape multiple times) she said, "Goodnight my special mommy! Have so much fun at work tomorrow!"

SERIOUSLY. She is a dream.

We went out to lunch after church, and an older woman (probably mid 80's) was in the bathroom as I was trying to get Lauren to hold onto the counter and balance on her right foot so I could wash my hands. She wanted to use the 'magic towels' aka paper towel dispenser herself, so I'm sure you know what that was like. The woman said, "I had a brother just like her. People are so much more accepting now, it's really a great thing. It's so wonderful to see her be so self-determined!" Then she stopped us again as she was leaving, gave me a hug, and said, "Don't they just have more heart than the rest of us?" I teared up and said, "We really are the lucky ones." And then she teared up. It was such a beautiful encounter and I really, really love when we get these kind of divine meetings. It feeds my soul.

This is hard and how it's different from parenting a typical 6 year old. (Not that I would change her!)

I'm admitting this is hard!

I feel like I currently have my normal Lauren-level of difficulty (minus the elopement since she can't walk right now, thank God. It's been a nice break.) plus the mobility issue. Today was a super fun day, but it was really freaking rainy. Wheelchair plus rain is not fun! Lauren gets a little freaked out about little things like raindrops touching her wheelchair, her coat, her pants, etc. I can never transfer her from her chair to the car fast enough. She's really freakin' heavy.

But you know what? She called me "sweetie mommy" multiple times today. I got tons of kisses and hugs. She was awesome today about telling me she needed to go potty. She wore the same outfit all day! No potty accidents. This is a big deal nowadays because it's tricky with her not being able to get herself to the bathroom. She doesn't generally love to tell us she has to go, but she did awesome today. Ryan had a self defense class for kids today, it was awesome. My nephew did it too. I signed Lauren up knowing she'd likely not be able to participate in the majority of it. She did for about 5 minutes, and during that 5 minutes Ryan reached his arms out for me to hand her to him, then put his arm around her while she sat on the floor next to him. Melt my heart! The rest of the time she sat in her chair or on my or my sister's lap. She got plenty of snacks, watched my phone for a little. She covered ears when it got too loud in the class. (Why am I incapable of remembering to bring her headphones to things like this?!) She asked to go potty a couple times there.

Then we went to lunch at a coney island, and she was great there. They had little quarter candy machines at the front and afterwards I gave all the kids quarters. Lauren got (my choice) a little plastic animal instead of candy. (They only had gum. Funny, I let her try gum again earlier today for the first time in a year and remembered why she can't have gum. LOL.) She got a cute little squishy squirrel and I told her not to put it in her mouth and she didn't! Not even one time. It's itty bitty, like the size of gumball. She thanked me several times and held onto it all day (she loves to have things to hold onto).

We all went back to my house to hang out, she was pretty people'd out so she watched my computer and had some downtime while the boys played. We played Barbies a little bit (the bane of my existence, I am a bad pretend-player. Plus she always wants to make one of the Barbies sick and have to go to the doctor/hospital/dentist. You know your kid has special needs and lots of doctors visits when....).

Then later a while after Greg got home from work we were going to have a family movie night and it was Ryan's turn to pick. She desperately wanted to watch Puppy Dog Pals and couldn't be persuaded, so she and I found an episode on YouTube and snuggled upstairs. She got to talk to Grandma Pam and Pa Tim before bed. Once her show was over it was bedtime and she didn't argue. I of course snuggled with her a little bit while she was falling asleep.

And I realized how lucky I am I get to do this. Is it hard? Yes! It's mentally and physically exhausting a lot of the time. But she is generally a pretty happy kid and she just wants to be near me. If she could spend 100% of her day touching me in some way, she'd be thrilled.

There's really no downtime right now for me. If she's watching TV or whatever, she needs me to get her water, snacks, clean her glasses 50 times, etc. Take her to the bathroom, fix her sock, etc. In many ways this is no different from parenting a typical child. The self defense class today was for ages 5-7, Ryan was only there because it was for my sister's work and my nephew is 5 so he got to go too. Seeing what other, typical girls and boys in this age group look like and behave was a little bit of a reminder that yep, I am not parenting a typical daughter. Lauren isn't shy, but she often won't talk to other people. Lately when asked a direct question by anyone but me, she whispers to me, "Mommy, you tell her!" If she doesn't want to do something, there is no bribing or coercing her most of the time. She doesn't whine about it, which I love. But she is also not easily persuaded. With Lauren, what you see is what you get. I don't know if she's realizing lately that others may not understand her speech and it frustrates her? I'm really not sure what to make of it. The kids in this class could hear multi-step directions, watch a demonstration, and then complete the activity independently. It feels like Lauren is light years away from this skill. The class was explaining the concept of running away from a dangerous person, the different between good people and bad people, good touch and bad touch, NOT going with somebody because they offer you candy/a puppy/a toy, etc. They talked about causing a scene if someone tries to abduct you, that bad people are often not strangers, using a family password so that an unsafe person can't coerce the child to going with them. These are not concepts that Lauren cognitively understands or is able to process right now.

I don't list these differences to complain at all. I certainly wish Lauren was capable of age appropriate skills, of course I do. I simply want to highlight the differences between where Lauren is currently compared to typical peers. Parenting her in many ways is very unlike the reality of what other parents of typical 6 year olds live on a daily basis.  In someways I love Lauren's innocence and her complete faith that everyone wants what's best for her. But of course it's terrifying and I wish I could keep her in a bubble of safety and love.

Here's Lauren and I during the class

 Here's Ryan with the instructor. They were role playing Ryan walking home from school and someone approaching him and trying to coerce him to go with them. Ryan was a year too old for the class and almost the same height as the instructor! It was funny to see and did not go unnoticed. During this exercise,she helped all the kids put the backpack on. Then she got to Ryan, handed it to him, and said, "Sir". We all died laughing. They also talked about how you can tell a good person from a bad person. Ryan said, "A bad person will have a devilish smile!" Ummmm, what?! LOL.

I want Ryan to do the course for 8-12 year olds this summer, but convincing him might be impossible. That class covers everything they talk about in the younger class, but goes over bullying in more detail and I think talks more about being coerced to go with someone vs abduction (because 8-12 year olds generally are a little harder to just pick up and run off with). The instructor asked for a volunteer kid to let her pick them up to demonstrate and Ryan was the only kid who raised his hand. She was like, uh that's not gonna work!