Missed

YOU GUYS. I forgot to blog yesterday. 8 years in and I ruined my streak. I remembered when I was laying in bed at 4:30 this morning after getting up with Lydia. No excuse, no reason, just totally forgot. I mean, I’ll go ahead and blame the kids. I think having 4 children has turned my brain completely to mush. I can’t remember anything without setting a reminder these days. (Which is bad, since I always used to juggle it all in my head and sometimes I still think I can do that. Spoiler: NO I CAN’T.)

In other news, I still have what appears to be the longest lasting cold ever. (Well, I guess 3 of the kids got over it quickly, so maybe not.) Daniel still has it too, runny nose and coughing in his sleep, and now Brian has it. Maybe we’ll all get over it in time for Thanksgiving next week? Let’s hope so.

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Lydia at 18 months

Yeah, yeah, Lydia actually hit 18 months in August. Whatever. Anyway, her 18 month well check was interesting- she’s jumped WAY up on the growth charts. She’s 33 1/2 inches tall (90%) weighs 27 lbs 3 oz (90-95%) and her head circumference is 19 1/2 inches (>95%.) Continuing the tradition of huge heads. Anyway, if you’ll remember (or possibly I never wrote about it here) at her 2 month appointment she was TEENSY. Like, 5% for weight and height. So yeah. BIG CHANGE.

The pediatrician asked if she’s saying 10 words- No. She uses some signs, but she definitely doesn’t say 10 words. And he asked if we’re limiting pacifier use, which HA! NO. I mean, Lydia has like 3 things that comfort her: Me, her bear, and her binky. So until she’s easier to comfort I’m sure not going to remove any of those things. Also, she doesn’t suck on her binky constantly. Mostly she uses it when she’s sad or tired. (OBVIOUSLY she would not let me take it out of her mouth when I took her to get her 18 month pictures. She was sad AND tired, so I wasn’t surprised, but man she is a pain to get pictures of in a studio. (At her 6 month pictures she cried so much that in the end they put a blanket OVER ME and she sat in my lap for the pictures.))

Anyway. Sleep is still…eh. Getting better I think? Maybe? Hopefully? Surely I’ve guaranteed us a sleepless night with that. We’ve been working on a couple things, sleep-wise. For one thing, she had been going to bed with a sippy of milk and sometimes if she cried in the night we’d give her a cup of milk or water. We’ve stopped both those. It hasn’t stopped night wake ups, but they were bad habits anyway.

Beyond her comfort objects, Lydia has 3 favorite things: A tiny black purse, pictured here:

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Cooking utensils, both play utensils and real ones, although the real ones are better, obviously. And last, but not least, diaper cream. Any time she’s in the vicinity of the basket where we keep diapers, wipes, and diaper cream she goes straight for it. Then she carries the tube of cream around as long as you’ll let her.

(She’s already been up once, while I was writing this! Can’t ever say sleep might be getting better!)

It’s a good thing she’s cute.

Eyes and ears

We’ve known for a while now that Daniel is far-sighted. It’s recommended that kids with Down syndrome get their eyes checked out by a pediatric ophthalmologist at least once a year because eye problems are common. The first time Daniel had his eyes checked was 6 months. At that point they were just checking out his blocked tear ducts, and after checking back at 1 year they had cleared enough to leave alone. (His eyes are still prone to goopiness though, any time he has a cold or congestion.) At his 18 month appointment the doctor told us he was slightly far-sighted, but that she didn’t think glasses would be worth the fight at that point. His vision wasn’t bad enough that glasses would make a huge difference, and it wasn’t interfering with his development at all. (Really bad vision at that age could have interfered with depth perception, making learning to walk extra hard.) Then we moved and…I don’t think we got his eyes checked when he turned 2. Anyway, when he turned 3 I DID get his eyes checked and at that appointment the doctor said she would either write a prescription then, or we could come back and check in 6 months. I opted for the “check back in 6 months.” We had noticed some eye crossing and squinting, and she told us definitely call if those got worse. Well, those did get worse over the next couple months, and I called, but the next available appointment ended up being around the 6 month check in point anyway. There was no question we’d be leaving that appointment with a prescription.

Coincidentally, the school did vision screenings about 2 days after Daniel’s ophthalmology appointment. The call from the school nurse went something like this:

Nurse: So, we did vision screenings today…Daniel’s teacher said he recently had an appointment at the eye doctor?

Me: Yep, on Wednesday. His glasses are in the mail!

Nurse, clearly relieved: Oh, good, because I noticed some things

and then she went on to describe stuff we’d seen too. And she told me she’d send home the results, be that we could obviously ignore the recommendation for a full eye exam.

His glasses have not been NEARLY as much of a fight as I expected. I figured he’d be taking them off every 2 seconds and refusing to wear them, but it hasn’t been like that! He can CLEARLY see better with them on, and he recognizes that too. He’s happy for us to put them on in the morning, and although he does get tired of wearing them sometimes and takes them off, that is happening less and less often. Plus, look how cute he looks in them!

(Side note: My sister Kari has been hoping he’ll need glasses literally since the day he was born. Got her wish!)

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Now on to ears. Hearing screenings happened at school a couple weeks ago and Daniel’s results were not good. If you’ve been reading here long you know that this isn’t the first time we’ve had trouble with his ears. (Which, again, unsurprising for a kid with Down syndrome.) He failed all his newborn hearing screens, and then failed a couple hearing tests at the audiologist once he was out of the NICU, had an ABR, blah blah blah, finally had a set of tubes placed at 5 months and passed a hearing test. He had his second set of tubes done at 18 months. At his 2 year appointment Daniel’s pediatrician referred us to an ENT at Children’s because he couldn’t tell whether the tubes were still in place or not. Turns out not, but the ENT couldn’t see any fluid, so he didn’t think Daniel needed another set of tubes right away. But, that’s been more than a year ago and it looks like he probably needs tubes again. So! ENT appointment later this month. I will let you know how that all goes.

Daniel and doctors

I have no idea when I last updated about Daniel’s health stuff, but I’m gonna go ahead and assume it was a long time ago. So! Last summer (ish? Sometime?) Daniel’s endocrinologist asked if I’d be okay doing a trial off his thyroid medication. His numbers had been good, and she wanted to see how he’d do without it. I said sure and we stopped giving it to him. We had a follow up 6 weeks later and his numbers were still good! I was pretty surprised actually. He’d seemed very tired, and not particularly himself. But we continued with the trial and checked in a couple months later and hey! Still good! Also, he had adjusted by that point, so no more thyroid meds! We will still be seeing his endocrinologist, however, since he is not growing much. At all. I’m not particularly worried. People with Down syndrome tend to be small and his appetite is fine. He eats plenty. Anyway, check up on his growth in…some months? I actually got a message yesterday from Children’s saying they were calling to schedule an appointment Daniel had been referred for and I thought, “Hmmmm. I wonder if that’s the one with his endocrinologist, or with the ophthalmologist. Or maybe the ENT wants to see him again? Oh! Or maybe we’re supposed to go back to the Get Up and Grow Clinic.” So yeah. I should probably call back. Also I should probably write stuff down.

We also saw the ophthalmologist again. I only called because they recommend kids with Down syndrome get vision checks every year and hey! He turned three! So it had probably been a year. Anyway, he is still far sighted aaaaaand it’s getting worse. The doctor said she was willing to go either way at this point: either go ahead and write him a prescription for some glasses, or wait six months and see him again. However, she told us to watch his squinting and eye crossing (of which we had been noticing some) and to call and schedule sooner if it got worse. And, well, it’s gotten worse. Or maybe it’s not worse and I’m just noticing it more. Either way, I need to call, because he needs glasses. (Kari will be so thrilled. She’s wanted him to have glasses basically since he was born.) I’m super not looking forward to trying to get him to leave them on. He doesn’t want ANYONE to leave glasses on, and attempts to remove them at every opportunity. So that should be fun.

Also he’s still cute.

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sick baby

Lydia is sick again. Just with a cold but, she’s pretty sure it’s the worst thing ever. We’ve learned what kind of sick kid she is too. All kids have their own way of being sick, you know? Will sleeps all day. Kalena is way more likely to puke than the other kids. Daniel gets pathetic and snuggly. Lydia? is our fever baby. Apparently when she gets sick she runs a fever. And then she won’t sleep. It’s all thrashing and fussing and nothing we’ve tried so far makes it better. I’m really not a fan.

Maybe tomorrow I’ll post about things I’m thankful for. Tonight I’d be thankful if this baby would go to bed.

9 months already!

Little miss Lydia is 9 months old already! Well, tomorrow. But we had her 9 month well visit today. Here are her stats:

Height:                          26 7/8 inches          25%

Weight:                         16 lbs 13 oz              20%

Head circumference:  17 3/4 inches          75%

So, she continues to be pretty teeny, although moving up! And giant head, because she is our kid you know. Developmentally she is right on target. I won’t lie, it’s kind of nice to be able to answer yes to all the “is she doing ____?” questions.

Sleep has been better. She’s still up a couple times a night, but back to bed right away instead of up for hours at a time. Take what you can get, right?

She’s still adorable too, in case you were wondering.

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Daniel and the thyroid stuff

So, Daniel’s been on thyroid meds for…a long time. I’d look it up in my archives, but I’m too lazy. Anyway, we’ve been seeing an endocrinologist here, and she wasn’t convinced that he actually needed the meds and wanted to give him a trial off. I agreed that we could try it. Why have him on daily medication unless he really needs it, right? Anyway, that trial started back in late September. She wanted me to give him a month and then have his blood drawn to see what his numbers looked like off medication. I took him in (finally) about a week ago and they called a couple days later with the results: numbers are normal. I was surprised. A lot surprised. Not just because he’s been on it for so long, but because of how he’s been since he’s been off.

Since we took him off medication he’s been MUCH sleepier. He starts asking to nap sometimes as early as 9 am. On medication it was no trouble to keep him up until the usual 1 pm nap time. He also naps for longer. He’s always been a good napper, but off his medication a 4 or even 5 hour nap is not unusual. That seems like a LOT of sleep. Because he still goes to bed just fine at 7 pm and gets up between 6 and 7 as usual. And obviously he’s sleepier when he’s sick, and I assume adjusting to being off the medication takes some time, but we’re 6 weeks in at this point. So. We have a follow up in January at the endocrinologist (we didn’t actually see her when we did the most recent blood draw.) I’ll definitely be discussing all this, because HMMMM. I don’t know what to do with this.

In the meantime, sad Daniel has an ear infection.

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And is skeptical of big sister in his lap.

Sick of being sick

Y’all. The kids have been sick SO MANY TIMES this year. I don’t remember if I wrote about it, but everyone was MISERABLY sick when I had Lydia. (DAYS before and after.) And it seems like it just keeps coming around. We didn’t even get a break during the warm weather, when stomach bugs are less likely to be going around. The kids were sick the first weekend of summer and again less than 2 weeks into the school year. So when Kalena started complaining on Halloween that her tummy hurt, we HOPED it was just too much junk food, but I suspected it wasn’t. And by later that night it was clear that candy was definitely not the cause. After that, of course, my next hope was that nobody else would get it. But when Will turned white as a sheet this morning at the breakfast table I knew I wasn’t getting that wish either. Today has been all naps and Netflix and crackers and ginger ale. I’m REALLY hoping that tomorrow will be back to normal. And after everyone is better can we get a year-long exemption from illness or something? Because UGH. Enough.

Lydia at 6 months

Well. I haven’t been doing a great job at posting 5 times a week in August have I? I have ALSO not been doing a great job at updating this blog with Lydia’s growth or milestones. WHOOPS. I’m going to remedy that now. I’m not sure I’ve ever posted her measurements here? After she was born anyway. If I did, TOO BAD you’re getting them again.

Lydia started off very normal sized, at 7 lbs 1 oz, but she quickly decided gaining weight is not at the top of her priorities. Here are her measurements.

                      Height                         Weight                    Head circumference

1 month         21 1/2 in (75%)        7 lbs 13 oz (25%)        13 3/4 in (10%)

2 months       22 1/2 in (50%)       9 lbs 4 oz (25%)          15 in (45%)

4 months      24 1/2 in (50%)        10 lbs 7 oz (5%)          16 in (50%)

6 months      25 1/4 in (25%)         13 lbs 1 oz (7%)          17 in (55%)

Apparently she’s putting all her growing efforts into her head size. Mostly she’s a teensy little lady. She’s still wearing 0-3 month size clothes, although I suspect if I tried to put her in anything other than a onesie she’d need a bigger size for the length. At her 4 month appointment the doctor was worried about her weight, because she’d dropped so much percentile-wise and because although she was nursing on demand she wouldn’t take a bottle. He recommended maybe starting solids early, but within a week or so she was back to taking a daily bottle so we didn’t worry so much about the food thing. And, as you see, her percentile came back up (a smidge) by her 6 month appointment. (Which happened on Tuesday, by the way. The day she actually turned 6 months!) These days she nurses on demand and takes a 4 oz bottle before bed. Sometimes she also needs an afternoon bottle 2-4 oz, but not every day. She is 6 months now, so we can start solids anytime. And she’s seeming interested in our food, so I suppose I should. Blah. Feeding a baby is not my favorite. So messy! So time consuming!

Sleep has been…not great. I think I blogged about that already. It’s been especially bad recently, with several nights where she was up for hours at a time, and multiple days where she got up for the day at 4 am. (Including today! Thankfully Brian took her at 5:30 and kept her until 7:30 so I could get a little more sleep.) I think there are many contributing factors here. For one, she picked up a cold from the older kids so she’s been snotty and snuffly for a few days. Also, she seems to be getting closer to crawling. She now scoots herself backward and tries to get up on her hands and knees. (It makes her SUPER mad, but she does it anyway.) I know developmental milestones can mess up sleep. AND she started rolling over WHILE she was swaddled so we’ve been transitioning from sleeping swaddled and in bed with me to not swaddled and in a crib. So. Lots of changes and not lots of sleep. Hopefully that will change soon!

Other milestones, let’s see. She rolls everywhere. She’s a big fan of her play mat but gets pretty mad when the music is finished. She likes sitting in the bumbo, especially while we eat. We have to be careful though, because she’s reached that grabby-baby phase, so anything within reach is in danger. She likes the toys that go on her bouncer, which is a first for us. Kalena wasn’t a big fan of the bouncer, and Will loved being bounced, but never played with the toys. I’m not sure we ever put Daniel in a bouncer. She still naps in the bouncer too, mostly because I’m not willing to sacrifice that time yet and when I try to lay her in the crib for naps she only sleeps for like 15 minutes. I’m hoping that, like Will and Kalena, once she starts sleeping better at night naps will be better too. WE’LL SEE. Lydia is very much a binky baby. She LOVES her binky. This is another first for us. None of the other kids took a binky at all past a couple months old. She also has a lovey- a little teddy bear/blanket. (Way back when I was trying to get Will to sleep through the night our pediatrician recommended a “transition object” and that’s how we got him attached to Buster Bear. I’ve been doing the same thing with Lydia and this lovey.) Her reflux is getting better. She still spits up some, but it does not seem to cause her nearly as much pain as it was. She’s generally a happy baby. See?

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Happy girl with her lovey. (And no binky. So you can see her adorable smile.)

Daniel update

Every 6 months I have a meeting about Daniel’s IFSP, how he’s done on his goals, what new goals we want to set, and how often we think he needs to see each of his therapists. That meeting was last week and, long story short, Daniel is doing GREAT. He’d met almost all the goals we’d set at the previous meeting (we’re still working on the food throwing issue, but that’s more of a behavioral thing than a motor skills thing) and at the moment there is nothing that stands out as Thing He Should Be Doing But Isn’t. Obviously he’s still delayed, but progress is being made on all fronts at a good rate. Here’s the latest on his progress:

He is now a full time walker! Aspen Grove was a big final push here because he wore shoes all week (something he doesn’t do much when we’re just at home.) Plus it gave him lots of opportunity for walking longer distances and walking on uneven terrain (again, something he doesn’t get when we’re in our house.) So WOO!

He signs about 25 words these days. I’m going to try to come up with them all here for my own record, so just skip down if you aren’t interested in which words. He signs: milk, more, eat, book, bath, car, out, water, done, baby, daddy, play, toy, Elmo (he signs an E), cheese, banana, nap/bed, please, poop, thirsty, up, prayer, and diaper. (I’ll probably come up with more as soon as I publish this, but that’s the majority of them.)

He mimics signs pretty well and tries to say the word with a few of them. (He’s pretty good at the “b” sound, so book and bath always get a “word” with them.) He’ll also say “YAY!” and “hi da” to Brian. He has no name for me and pretty much refuses to sign “mama.” Brian is definitely the favorite. He can point pretty well these days and will often accompany a point with “dat!” when he wants something.

He is getting better at fine motor stuff too: putting the shapes in the right place in a shape sorter, using a pen/pencil/crayon to scribble, pointing with one finger out and the others in a fist, stacking a few blocks on top of each other.

He loves to play “where’s Daniel?” and if you sing him ANYTHING (even made up nonsense) he will wait for you to finish and then applaud and yell “Yaaay!” So, if you’re in need of a self esteem boost, come on over.

He had a sleep study done a couple months ago. Did I write about that? I don’t think I did. Anyway, we went to see an ENT to check on his ear tubes (out, no need for new ones right now) and see about his tonsils (which are big) and then ENT recommended a sleep study before considering a tonsillectomy. Also, apparently the American Academy of Pediatrics recommends that all kids with Down syndrome have a sleep study done before the age of 4. (Sleep breathing issues are common with Ds.) So: sleep study.

Side note, here’s a little amusing story from the ENT visit. We had a conversation at the end of the visit that went something like this:

ENT: How’s his speech?

Me: oh, he doesn’t say any words, but he’s getting speech therapy through Early Intervention.

ENT: So…does he have any other diagnosis?

Me: Ummm, no he’s a pretty healthy guy. We saw a geneticist after he was born and things look fine.

ENT: Oh, so you’ve seen a geneticist?

Me: (Thinking, “Obviously. Don’t they always have you see a geneticist if your kid has Down syndrome?”) Yeah, at Children’s in Denver right after he was born.

ENT: Well he’s got a low palate, so that could be partially obstructing his airway when he sleeps

Me: Right, probably because of the low muscle tone.

ENT (as we’re about to leave): So…he doesn’t have Down syndrome, or anything, does he?

Me: Well, YEAH he has Down syndrome.

Then I laughed because he’d been trying to figure out if Daniel had Down syndrome and I’d been answering all these questions assuming he KNEW Daniel had Down syndrome and was asking about things IN ADDITION TO. Read the file dude. Anyway. *I* was amused.

But back to the sleep study. Brian stayed with him overnight at the clinic where Daniel got to sleep all wired up and looking like tiny Santa. See?

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Results came back fine. His sleep is good quality and since he didn’t have any episodes of apnea there’s no reason to take his tonsils out right now.

He had his 2 year well visit (back in March, slacker blogger here) and he weighed in at 23 lbs 9 oz (10%) and was 33 3/4 inches tall (45%.) He and Will are close enough to the same height that they can wear a lot of the same clothes. Since this visit we’ve also seen a pediatric ophthalmologist and got the same recommendation as his last visit (which was in GJ): he’s slightly farsighted, but it’s mild and he’s still young enough that trying to keep him in glasses would be more of an effort than it’s worth. So! Recheck at age 3.

He loves baby Lydia, but is not very good with “gentle” yet. He wants very much to be allowed to touch her, but his version of that is usually hitting her in the face. Sometimes with a toy. He is also a big fan of taking her pacifier out, sometimes to suck on, sometimes to try to shove it back into her mouth. The other day he walked over to her in the bouncer, smacked her in the face with a toy and then when I picked her up he laughed maniacally and climbed into the bouncer himself. So he’s adjusting to the big brother roll pretty well 🙂

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He continues to be a mostly happy little dude. He’s not always happy, of course, but he is just So! Exuberant! when he is happy. His emotions are all pretty unfiltered though, so when he’s mad we KNOW. It’s fortunate for us his temperament is generally good. And of course, he’s always making new friends.

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