Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Monday, January 15, 2018

Fingers crossed, knock on wood, things are good.

I should not be posting this, because the jinx is alive and well at my house....but Lauren has been SO GOOD for me lately. We've still had our normal issues with being extremely stubborn and not listening super well. But she's been so sweet. And a lot less impulsive. She'll wander away from me at Target or pretend she can't hear me if she wants to walk somewhere else, but she hasn't been darting off (knock on wood). This is major! It's still really challenging for me to take her places alone like a grocery store, because generally speaking she can't (either physically or behaviorally) walk through the whole store. And she's over 50lb of solid low muscle tone, so lifting her up high enough to fit into a grocery cart seat is getting impossible. I'm short, so I have to lift her over my head to get her in the seat. This does not work! The times where Lauren will help me out a little, she'll swing her legs up and into the seat part. The times she won't, I look like some kind of crazy person trying to wrestle her into the seat. Our Target does have a Caroline's Cart, which is immensely helpful, but for some reason the wheels are super loud and she covers her ears. Our Kroger does not have one (yet) so grocery shopping is really tough. It's sad, because her love of Kroger rivals how most kids feel about Disney World! When I go without her I have to hide all evidence or lie and tell her I went somewhere else.

The kids have both tried roller skating! Lauren did it for literally 5 seconds and I realized that at this point in time, her legs just cannot do it. With her foot issue especially, I think we should master walking first! Ryan has done it twice (once for a birthday party yesterday) and is getting more confident! I'm going to ask our local roller rink if they'd allow me to bring Lauren's wheelchair on the rink. I know she would absolutely love to have the experience of roller skating!

Ryan's been struggling kind of a lot, which makes me sad. I don't post a lot about him because he wants his privacy protected, but we could use some prayers regarding his anxiety. It hurts my mama heart that I can't make this better for him.

The kids had today off of school for MLK day. It's been great because this is the first year that Ryan seems to really understand who Martin Luther King Jr. was and he seems eager to learn about what he accomplished for civil rights of our fellow Americans. My parents watched the kids today since Greg and I both had to work and Ryan asked my dad to take him to the Henry Ford Museum. They had so much fun!

I booked my hotel and retreat registration for the Down Syndrome Diagnosis Network Rockin' Mom's Retreat! It's a weekend retreat for moms of kids with Down syndrome. And it's in Phoenix, AZ! I met a bunch of moms online through a Down syndrome forum and in Facebook groups. I am so beyond excited to feed my soul and meet some awesome moms. It's really outside of my comfort zone to go to something like this (even flying alone is a big deal for me!) but I am really excited.

Sunday, January 7, 2018

Today was a BIG DAY for both of our kids.

Ryan got up this morning, got dressed for church (in a button up shirt, no less). Then when it was time to leave, he put his shoes on, got in the car, and we went to church. This sounds normal, right? This has NEVER happened before. Ryan has a lot of anxiety surrounding leaving the house. Even to go places he likes (like church), it's not easy for him. Greg works most every Sunday, so it's generally just me, as it was today. I am so incredibly proud of him. I even let him get an Oreo McFlurry after church to celebrate!

And Lauren read us a book today. Seriously. Read. Us. A. Book. I just happened to look in her backpack for the first time over Christmas break (school starts tomorrow, don't judge me) and they sent home a book for her to read. The other kids in her class have been getting books sent home, but she wasn't ready yet. So I pulled it out and told Greg, "Lets see if she knows any of these words." Um, she did. She read us the whole dang book. It's pre-reading skills and not decoding, but she had to recognize "I" and "am". Then she had to look at the pictures to give her some clues as to what the verb was. I wish I knew how to post videos on here!


In other amazing news, my husband and I talked and it looks like I'm going to the DSDN Rockin' Mom's Retreat in September!!!!! I am SO EXCITED to meet in person (finally) some friends I met online over 6 years ago when we got Lauren's diagnosis prenatally. I can't wait.

Friday, December 22, 2017

Unicorn parenting day

Today has been a unicorn of parenting day. So rare that you're not quite sure it even exists...

I got home from work, Lauren was randomly napping in the foyer. But she woke up and wanted me to hold her, so of course I did. She was so snuggly!!

I (of course) did not plan anything for dinner, so I asked Lauren if she wanted to get a carryout from her favorite place (Las Palapas, for the locals). She was so excited! She asked me if we could have Monte call in our order, haha. Then she asked if Martha could do it. Martha is our cat! She then pretended to be Martha and said, "Hi! Las Palapas? Meow meow, I want nachos!" Then we played with her doll house and her Barbies until it was time to go get our food.

I took her with me to get the carryout, which is always a gamble. That place is always jam packed (rightfully so, it's amazing) and we all know Lauren doesn't always do great it crowded places. And then the parking lot was totally full, we had to park at Walgreens and walk over. Thank God we drove my car and I had her wheelchair in my trunk! Walgreens is across a driveway that comes from the busy road. It's really not that far, but too far for her to safely walk in the dark if she was even willing/able to do it. The whole car ride there she pretended to be her teacher and she made me pretend to be her classmates. She was in a great mood!!

We got in the restaurant and it was loud and crowded, but people were being so kind and offering to open the door for us, moving chairs out of the way (it's tricky to fit a wheelchair back to the carryout area). It's always really nice to not feel like we're inconveniencing anyone.

She asked for a "nacho chip" in the car, so I gave her a chip to snack on for the ride home. We got home and she helped open all the containers and keeps calling me sweetheart and honey. Greg gave me a hug when we got home and she said, "Aww, Daddy, you love my mommy!"

She's currently sitting next to me eating rice and beans while watching obnoxious YouTube videos. I tried to go sit down on the couch to relax, but she called me over, patted the bench next to her and said, "Mommy, I have some place for you!"

I hope I'm coming even close to accurately describing how sweet she's being today. I don't want to jinx it, but we seemed to have a turning point last week. December 11th. She's had a great day every day since then. Of course she has her moments, but she hasn't had one of those days that she completely retreats and withdraws from us. She's been with us and engaged and sparkley-eyed since that day! We increased her medication for behavior/adhd right around Thanksgiving so I wonder if it's kicking in. Greg thinks maybe she's just finally out of the "terrible 3's" (a couple years late). Either way, we are so thrilled and we feel so incredibly blessed to have had so many good days.




Friday, November 17, 2017

I'm a good mom

"I not love you!"

Sigh. I got home from work around 6:30, and this is what Lauren greeted me with. So, it was going to be that kind of night? I was so tired. I worked over 40 hours this week and had a good 45 minute commute home due to traffic and road closures. I just wanted somebody to be nice to me! I was not prepared for that kind of night.

It really wasn't though. I told her that we have to be nice to our family because our family loves us. I was then on the phone with my sister about 20 minutes later, and Lauren asked who it was. I told her and she said, "I like her! I be nice!"

She wanted new pants because there was a tiny hole in the knee of her leggings. As we were changing, I asked her if she fell down at school (she did, she fell during PT and bumped her head, nothing serious). She told me, "Nope! Henry fall down at school. He not hurt his back neck, he hurt his front neck! (pointing to her own throat). He cry! No blood." It took me a good 5 minutes to understand she was saying Henry, so she was mad about that. I also have no idea if that's even true, also how he would fall and hurt his "front neck" I have no clue. But she was very animated telling me about it!

Then she told me, "I eat snack after school. I get ketchup everywhere! Dad be mad for me." And lo and behold, she really did have a full plate of ketchup at the kitchen table. She is getting so good at re-telling events!

We sat down for dinner and she told me she was cold, which actually means she wants me to get a blanket and wrap it around her like a poncho. Then she told me "I can't use my hands! You hafta feed me!" What's a gal to do? I fed her a couple bites of tortilla chips dipped in ketchup...to my little girl wrapped like burrito in my fancy decorative blanket that I didn't want the kids using, smiling up at me like I just hung the moon.

She then told me, "Mommy, I tired." So we put on her Christmas jammies and talked about what she wants to ask for from Santa. She wants a baby doll and a batman! She gave me endless hugs and kisses. She gave her dad enough kisses to be obnoxious. She hugged her brother before heading into her room.

We had a little tea party before bed with me, her, her stuffed lamb, her stuffed Max (from Secret Life of Pets), and her garage-sale-find life size Barbie. Today ended up being a really good day. We have days where she seems so distant, almost like her true personality is locked way. And then we have days like today, when she's just so with us! She was so animated, she was signing dancing, she was teasing her uncle, and engaging us in conversation. She told us stories about her friends at school. I live for these days.

As I rocked with her before bed I realized something. I am a good mom. Even on the days it's hard. The days that I just can't wait for bedtime. Even though I mess up every single day and end up inadvertently reinforcing her bad behavior by just giving in. Even the days she goes to be mad at me for not giving in.

It's no secret that Lauren is not an easy kid. She is very busy. She wakes up full speed and stays there until she tells us she's ready for bed, luckily she likes to go to sleep early. Some days are emotionally challenging, physically challenging, and make me feel like I'm failing everyone I'm responsible for. But on those days, I need to remember that I am a good mom. I love her more than life itself. Lauren is loved, and she knows it. Even when she doesn't feel like she loves me, whether that's because something frustrated her before I got home or because she had to poop or because the planets didn't align, I really do believe that she knows I love her enough for both of us.

If there is one thing in this life I know how to do, it's how to be her mom. That doesn't feel good every day and in all honesty, I don't like it every day. Sometimes my heart and my soul feel crushed by the weight of my failure and I wonder why God thought I was capable of being Lauren's mom. Those are the days I need to remind myself that she never feels that weight. She doesn't feel like a failure at all, she doesn't wonder why I'm her mom. She just knows I'm here, she knows that I love her, and she knows I'll be there that day, and the next, and the next. "I not love you" to Lauren means, "I'm frustrated and I don't know how to tell you" or maybe it means "my belly hurts and I don't know why" or maybe it means "I woke up crabby and I'm taking it out on you". It might even mean, "I'd rather have dad right now". But the hugs I get at bedtime, the smiles I get for giving her a new cup of water, the way she rubs my cheek and tells me I'm adorable (she really does this, it's ridiculously cute), those are the ways she tells me she loves me, even on the days she can't say it with words.

Sunday, October 22, 2017

October Update and pondering about foot surgery

Lauren is about 3 weeks out from surgery and doing awesome. She's off all pain meds, constipation is resolved, and she's super happy to be back to school. Before bed tonight she told me that she really likes kindergarten, then told me all of her friends names (some of which I couldn't understand) and named her teacher twice! She really loves her teacher (so do we). She also told me she really likes the safeties and they're her friends. There are a couple of "safety" kids (4th graders) that go out for recess with the kindergarten kids. I'm honestly unsure if they always have, or if that's new since the elementary school only just started housing the special education program. Either way, Lauren absolutely loves them and I think they really love her too. Her teacher communicates multiple times a day via an awesome app and sends pictures. Once I got a picture of Lauren and a classmate or two smiling with a safety. It was really awesome to hear her talk about them. I LOVE when she tells me stuff about school, she usually just says, "Nothing, I'm tired". So to get so much info straight from Lauren is pretty great.

Lauren's behavior has been pretty good lately. We still have our snafus here and there, but overall, I truly can't even believe the difference since we started her on medication in early September. She was with grandma today and only got 1/4 tablet in the morning instead of her usual 1/2 tablet. She was like a (very adorable and sweet) wild animal this afternoon. She was literally carrying our large, metal kitchen garbage can around the house. And impulsively pinching my face. It got better after her normal afternoon dose (she takes it twice a day). I'm afraid to jinx it, but she has barely even tried to elope since we started medication. She's still wandering sometimes, but she's rarely bolting away from us anymore. She's still definitely a two-parent kid when out in public, but it feels less overwhelming. I found out recently that her medication is on back-order from the manufacturer and had a mini-meltdown. But I managed to stockpile and I think (and hope) we're good for a while!

Ryan's getting more acclimated to his new school, but it's not going as smoothly as we'd hoped and he's struggling a bit to make friends. I haven't posted a lot about it because I'm respecting his privacy and he'd hate for me to write about it. But if you have prayers or good thoughts to spare, we'd appreciate them. He does have a couple of new friends now and things are looking up!

Now about the foot surgery. I've posted before, we discovered recently that Lauren has a congenital bone fusion in her left foot. After Lauren's tonsillectomy, I was so upset about how she was in the recovery room and so upset about how constipated she got, that I had kind of told myself that we weren't going to do the foot surgery she needs. I'd almost had myself convinced that we could wait a couple years because it's not so bad. Buuut of course reality has kicked in. The orthopedic surgeon said we should schedule surgery when it's causing pain and impacting function. I'm kind of unsure about pain because I truly do think she says, "My leg hurts, I can't walk" when she doesn't want to walk. But she's not faking the limp and she's not faking falling down a lot. Her limp tends to be more pronounced at the end of the day (not surprising) but it's pretty obvious all the time if you're looking for it. Watching her run is terrifying because we can see her left foot turning in and there's a 90% chance she's going to trip and fall. It's not like it's really limiting her activity at school, by all accounts she plays on recess and walks fine at school. But after school and on weekends we feel like her limp is pretty pronounced and she is voicing pain. How the heck do we know if we should believe her?! My original plan was to do the surgery in the spring so we could avoid wrangling her wheelchair in the snow. But now I'm questioning that because her whole summer (6 weeks in a non-weight bearing cast) will be less than fun. We want to go camping, and she loves swimming. And if we do it in the summer, I'm probably stuck home for longer because we're using a daycare facility over the summer and I doubt they're going to be gung-ho on taking on a kid with special needs and physical restrictions/toileting transfers,etc. The hardest part is going to be figuring out how much time I really need to take off work (I don't really want to take several consecutive weeks off of work, but it's likely that grandparents aren't going to be able to lift her). I may just adjust my hours at work during her recovery period, like take a couple weeks off right away and then just making sure I can get her on the bus because there is no way in heck I'm keeping her home from school for as long as she's in the cast.

I wish a magical decision-making fairy would just tell me what the right decision is for when/if to schedule her surgery. If she was in serious pain and refusing to walk all together, I wouldn't even hesitate. I honestly don't even know if I believe when she says it hurts. And her limp is impacting function for sure, but enough to schedule the surgery? I just don't know. The thought of if/when to do this consumes me. This part of parenting is not in the manual! (Seriously though, if kids came with an instruction manual parenting would be so. much. easier.)


Oh, and here's a picture of me and the husband. He says I never post about him, so now I am. We have amazing parents and managed to sneak away for a kid-free weekend to Grand Rapids. We were total tourists and did a beer trolley tour of breweries. We slept in, drank too much, and remembered why we like each other so much.

Saturday, October 7, 2017

Tonsillectomy

Lauren had her tonsils and adenoids removed on 10/5. I was so scared and almost cancelled multiple times! I had mine out almost 3 weeks ago and I'm still not feeling back to myself yet.

She's doing way better than I did. As long as I'm not late with giving her pain meds, she's really doing fantasic. Nobody's sleeping because I'm waking her up every 4 hours for meds, but it's 100% worth it to make sure she's not feeling badly.

The surgery went great, no complications. She is, however, apparently one of those people that wakes up from anesthesia really agitated. As soon as we got a glimpse of her I knew it would be a nightmare. She was agitated, out of it, and her OCD was in overdrive. She was refusing to drink anything so we were thiiiis close to being admitted. Her OCD was largely centered around the tape holding her IV in. She just kept saying 'I want it off. I want it off. I want it off.". She couldn't stop moving her arms and legs. It was bizarre. I felt so helpless because nothing I was doing or saying was helpful. She didn't want to be touched. She finally drank some water so they were willing to pull the IV. Then she wouldn't let them touch her. Luckily, she was willing to let me do it and the PACU nurses were comfortable with this. Thank GOD I'm a nurse!

So yeah, about that being a nurse? I mean, I knew this already, but it is so different when it's your own child. I had to step out of the room for a second and totally lost it. I was sobbing, it was so so sad. I know that in comparison to her medical/surgical history, tonsils and adenoids are nothing. But I'm a firm believer that there is no such thing as a minor procedure when it's your kid.

She's feeling lots better and I am so thankful everything went well.

In all honesty, it's making me re-think doing the surgery she needs for her foot. She get around pretty well and hasn't complained of a lot of pain lately. We'll have to play it by ear. I feel like a horrible mom for saying that, but I'm terrified of going through that recovery process again.

Tuesday, September 26, 2017

Service dog update!

I thought I blogged about this, but I just realized I didn't! Here's a good explanation of how Lauren, Monte, and I work as a triad team.


The thin leash on the left is attached to Monte's head collar. (It can look a little like a muzzle, but it's similar to a horse bridal in that it just allows us to "steer" him by the head rather than his neck. He can open his mouth fully with this on.) I always have full control of this leash, I wear it as a hands-free leash, it goes on like a cross body bag, so I have full use of my hands (necessary for all kids, especially kids like Lauren, lol).

The thicker leash you see on the right is connected around Lauren's waist and attaches to a silver loop on Monte's pack. This physically stops her from eloping. He will either stand and refuse to move or lay down if she tries. Generally, if we're just all walking, he just walks at a normal pace. If she starts to bolt, he resists and then I can then stop and talk to her, get more on eye level, and try to talk through the problem.

When they aren't tethered, he will stand in front of her and physically block her from eloping. He's only actually had to do this a couple times. The truth is, when he's with us, she's much less likely to run. She loves him and he gives her a sense of purpose and responsibility. There's a small handle on his pack that she will sometimes hold onto. Other times she'll hold onto his leash with me. Other times she will just rest a hand on him. Other times she will just walk next to him. This can be tricky, because usually then he tries to block her (even when not neccesary) and just gets in front of her and she gets irritated. It's a bit of a work in progress, I think he feels like he needs to be touching her or connected to her while we're out in public. Lauren generally goes with the program! The only time we really force the tethering on Lauren is if we're somewhere where we KNOW it's going to be hard for her. Church is rough because it's loud, crowded, and generally a huge trigger. Places like Target, etc that can be quieter she tends to listen a little better. But she also knows she gets no chances. If she tries to elope, they get hooked together. And sometimes we give her a choice and she will choose to be tethered to him.

My picture says autism anchor dog. That's technically what Monte is. Lauren doesn't have autism, but kids with Down syndrome can (and Lauren does) share a lot of characteristics with someone on the autism spectrum. Lauren tends to elope, she has sensory issues, she wanders (different from eloping), she has meltdowns. Monte helps her with all of this. The sensory input of Monte's fur helps give her sensory input. If she's freaking out because something is loud, or hurts, or is bothering her, she can pet or hug him and he calms down her overactive sensory system. He blocks others from getting too close to her during a meltdown or when we're out in public. (As you probably know, Lauren is not your "they're always so sweet" kid with Down syndrome. She likes her personal space from strangers.) He stops her from eloping (running away). He stops her from wandering (aimlessly wandering away from us because she can be so off focus and off task that she doesn't generally realize that she's walking away from us and into danger).

Basically, he's her lifeline. Where she goes, he goes (outside of school and brave moments on my part). He seems a little lost without her sometimes during the day and he'll wander around the house. He loves his downtime, don't get me wrong! And he can be a crazy dog when he's "off duty". But he luckily really has a drive to work and is amazing as soon as we give him the "dress" command and put his gear on.