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

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


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.