(This picture is mostly funny because she got a glimpse of the goats again. Those dang goats. At least, with a goat, we never have to worry about the “he followed me home from school so I can keep him, right???” conversation that would inevitably ensue…)
Saturday, October 30, 2010
Thursday, October 28, 2010
It always interests me to discover the questions people have about us, about Piper, and about Down syndrome in general. I would much rather people ask questions and get the right answers than sit and wonder, or have incomplete/inaccurate answers.
So, on that note, I’ve had a couple of comments lately that pertain to Piper and her surgeries. Thought I’d clear the air and answer on here, too. Chances are someone else has had the same questions!
The one that’s come up a couple times lately is if ALL of Piper’s problems are caused by her having Down syndrome.
The biggest thing Piper has faced was her prematurity. I’m fairly certain that her being a preemie, not strictly being born with Ds, was the cause of some of her sensory issues (all of which have gone away at this point, but the most obvious was her ability to OVER-stimulate easily), a lot of her difficulty in growing, and her difficulty learning to feed… However, she was NOT born early because of the Ds. Fact of the matter is that no one knows WHY she was failing in utero- it was likely just a fluke. Not all babies born with Ds are premature (although many are born preterm- after 36 weeks- and lots seem to be born by 38 weeks). Because of her prematurity, we get to adjust her skills by two months to determine any delays, plan goals, and know what to work on. In other words, instead of looking at her like she’s 17 months, we look at her like she’s 15 months. In the first two years (at two, the adjustments stop) those two months can make a huge difference!
Next are Piper’s surgeries. She’s had three major ones: one at birth to correct the Duodenal Atresia (where the intestine and the stomach are not attached correctly), one at 9 months to have her gallbladder removed, and most recently at 16 months to correct airway issues.
Duodenal Atresia is a marker for Down syndrome. We do blame that on the Ds. If she didn’t have Ds, she’d likely not have had DA.
The gallbladder was a side-effect of being a preemie and her DA. While the DA site was healing, she wasn’t allowed any oral feeds. And because was so teeny, and a preemie, they took a long time to get up to full oral feeds. So for a period of weeks, she was fed purely by IV nutrition. In some kids, the TPN (Total Parenatal Nutrition) causes gallstones. And that’s what happened with Piper. They started causing problems when she was about 3 1/2 months old, and by Christmas, I was convinced that we needed to have it removed. Turns out to be a wonderful decision- she’s done a lot better, in lots of areas, since then.
Finally, the airway issues. This, again, was not caused by Ds. Kids with Ds are more prone to have vascular issues of one kind or another, and that’s what they thought was going on at first. But when they looked at her heart, and all the arteries and veins involved, they could find NO structural abnormalities. Essentially, it was her TRACHEA that’s misplaced slightly further to the right than it should be. And EXACTLY what Piper has is VERY rare, for any person. Certainly not something that’s associated with Ds. Not that it made it ANY more fun to deal with…
I really hope that any other questions people have they feel free to ask. Sometimes I feel like people are afraid that they’ll offend us if they bring something up. Certainly not the case! Please feel free to ask away!
I think that Ds can appear a lot more scary than it really is, and than it should be. I don’t want Piper’s experiences to scare people off. Truth be told, outside of (despite?) these admittedly big things, Piper does very well for herself. Ds is big, yes. But scary? Something you can’t deal with? Absolutely not. Besides, who wouldn’t want something this cute???
Wednesday, October 27, 2010
The BEST part of the pumpkin patch was getting to see all the farm animals. They don’t have an actual petting zoo, but they do have quite a few beasts that you can get really close to. And I think that was just fine for Piper.
First she saw the giant Clydesdale horses. I wasn’t too sure what she’d think about them, being so big and all (the first time our dogs saw horses, I could hear them saying “Oh my gosh- those are the biggest dogs I’ve ever seen…” I’m pretty sure Piper shared that sentiment), so we watched from a distance for a second first.
Then she started pointing and leading me up to them.
The absolutely, hands-down, unequivocal best part, though, was the goats.
That’s right folks- the goats. The kid’s got <ahem> taste. She talked, squawked, and squealed at them. Even when we had finished and were a good 40 feet away.
She’s hoping that these pictures will encourage her grandparents, who live on a farm, to buy her one (to keep there, of course. Oh, please, to keep there). Christmas is coming, after all.
Monday, October 25, 2010
I can’t believe that it’s been 5 weeks since Piper’s surgery. Man, oh man, has time flown!
Piper celebrated her 5 week anniversary by sleeping through the night for the first time since going into the hospital (actually, that’s a lie- she slept the first night, and then decided it was overrated. I, however, have not shared that perspective…). Guess that means she’s on the mend!
She celebrated her four week anniversary with a big-girl bath! Complete with lots of bubble blowing, chest-soaking, splish-splashing FUN!
The incision itself is looking pretty good. We’re hopeful that it’ll get less and less noticeable as time goes on. I think it’s still a little tender (although, admittedly, her pain threshold is a little tender, too, lol) because she doesn’t really like me touching it. At all. She’s really defensive about her chest still (and the muscles in her shoulders, too), and doesn’t even like some of her shirts that rub her funny. I have to keep her from scratching a lot; it looks so painful when she’s pulling on it. I do think, though, that it’s getting better, so that’s what matters.
Her sticky-outty sternum is still there, although I do think it looks a little bit better every day. I’m pretty sure that she’s probably inhaling in this picture, which makes it stick out more, but it definitely didn’t do it before. Kinda breaks my heart a little, but again, hoping that it settles down as she gains a little weight and the bones heal more. Better to have a sticky-outty than having no idea what’ll happen if she got a cold, right?
Lifting the lifting-restrictions comes next- and I couldn’t be more excited. Since she seems to be a little tender, I’m not sure that we shouldn’t hold off until closer to the 8 week mark for doing lots of under-arm holding, but it’ll still be nice to do little bits here and there. Woohoo. Can’t believe it’s almost over!!!
Saturday, October 23, 2010
Because Courtney got so many pictures of Piper the other day, she also caught some of her signs. I’m totally stoked! I can never get them out of her on command with a camera looking at her(surprise, surprise), but apparently being thrown into a completely different environment threw her off enough to allow them to come. And because we were trying to keep her attention, we talked about pretty things, how funny she was being, and any other random topics that we could come up with. Piper participated, of course, by adding her own emphases.
So, for your viewing pleasure, a few of Piper’s signs:
Five down, only about 20 left. Hmm- maybe we should do more massive photo shoots and try to coax the rest out of her.
No, no- I’m really not THAT delusional. It would be fun, though, to have pictures of them. At least we got a couple right?
Friday, October 22, 2010
Good Heavens- has it really been WAY over a week since I posted? We’re alive, I promise, although sometimes I wonder if we’re really alive, or just mostly.
Piper picked up a nasty bug last week sometime. Monday she was sick. Sick. Lovely. And Wednesday? Wednesday she decided to share the fun with me. Fantastic. Why is it that just when you feel like you’ve crossed all your hurdles, you have to go around the lap again???
And now that I’ve got my feet back underneath myself, I tried logging on to work tonight and found that the system will be down all weekend. Double fantastic. Fan.Tas.Tic.
Anywhoo, enough with the grouching.
So I guess I have a lot to catch up on; I feel like since Piper’s been in the hospital the blog has been put on the back burner. And now I’m overwhelmed at the prospect of getting back up again, so bear with me…
Last weekend, my sister-in-law, Courtney, took pictures of Piper out at the pumpkin patch. We had SO much fun. The farm we went to is HUGE (around 1200 acres, if I remember right), with lots of different sections of pumpkins that you could choose from. There’s something like 8 miles of corn mazes that you can wander through (but with a 17-month-old, that just did NOT sound like fun), farm animals to pet, kids mazes, hay rides, bouncy castles, caramel apples… By this time in the season, the plants are pretty much dried up, but the pumpkins are still on the vine. They even give you carving knives to be able to harvest your pumpkins. Fun!
Here are a few of my favorite pictures- Piper enjoyed (surprise, surprise) being the center of attention.
Thursday, October 14, 2010
So now that all my stress is gone (and I do mean ALL) I feel like I can relay some of the additional drama that’s surrounded the last couple of weeks. I didn’t feel like “talking” about it because it scared me SO MUCH, and decided to shut up about it until we got some more information, which explains my rather laissez-faire attitude toward blogging lately. I just haven’t been in the mood…
The day after Piper’s surgery, her ENT came up and saw us. Thankfully Luke was there, too, so we both heard the same thing. The doc said that now that that part was fixed, we needed to start thinking about the next step. Luke and I assumed he was talking about the other two stenoses- until he started talking about doing a tracheal reconstruction (this is a good description). It’s a HUGE deal. Like really, really big and awful deal.
So I’ve been a mess. A real fruitcake, I’ll admit. It has NOT been a pleasant month. We never saw him again after that night (we saw his team the next night and then we were discharged), so we never got a chance to ask more questions.
The part that had me completely ruffled was that he wanted to do it before winter hit- as in the first or second week of November at the latest. And we’re at, like, what? The second week of October already???
So I’ve spent the last several weeks doing research, speaking with our pediatrician (who’s also been talking around trying to figure it out) and trying to round-up another ENT in the area to get a second opinion from. Problem I had was that HE is supposed to be one of the, if not THE, best in all of Colorado. So then I started second-guessing my gut instincts, and have felt completely floating in the wind.
Today was our follow-up with him. I had my argument laid out. I had questions that I would get good answers to. I had a plan that I wanted to follow, which I knew would be different from his considering his November timeframe. I made Luke take the afternoon off of work to go with us. I haven’t slept in weeks (confrontation is not my strong suit). I did not want to go.
We got there 10 minutes before out appointment; by the time we took the 200 foot walk from the check-in counter to their hallway, the nurse was already waiting for us. They checked us in (which, unfortunately, included waking up Piper who had finally fallen asleep) and put us in a room. Where we waited. And waited. And waited. You know how waiting is so exponentially worse when you’re nervous? It was awful. Piper, of course, was none the wiser, and had a jolly time playing in the exam room. There’s a shock.
The doctor finally came in (I am exaggerating a little- we were probably only a half hour late in our appointment, but we WERE there early, too…), took a look at her, listened to her for a second, and declared that the surgery was a success, and that we didn’t need to come back to see him. Ever. He didn’t even want to scope her to look and make sure because she sounded so good.
Are you kidding me? He asked if we had any other questions (after his 5 minute look-over). Luke and I looked at each other, dumbfounded, and then I got the nerve to ask about the reconstruction. He said “Oh, we were only thinking about that if she needed it”. Really? REALLY??? You couldn’t have told us that BEFORE now??? And I know he didn’t because Luke and I heard the exact. same. thing.
So, in the end, I wasn’t sure if I wanted to kick the daylights out of him or hug him. We chose the get-the-hell-outta-dodge-before-he-changes-his-mind approach.
The journey that we thought was only hardly started is OVER. OVER!!! Can you believe it? I sure can’t. I REALLY can’t. I’m still in shock.
And SO looking forward to a good night’s sleep.
…I wonder if Piper will participate in my endeavor…
Wednesday, October 13, 2010
Do you ever feel like you’re SLACKING?
Every once in a while I realize that maybe I should be focusing my energies on things that we’re, well, that we’re not.
And then I feel really guilty when Piper doesn’t get “credit” for something because we haven’t spent much time on it.
Today’s slacking scenario? Using utensils at meal time.
Piper’s been a phenomenal finger-feeder since before her birthday. And because she’s so good and efficient, I’ll admit that I let her continue doing it that way because it’s easy. For both of us. Bad, I know. But it is what it is.
Not that we’ve never tried- she has been able to do a dip-and-shovel maneuver with her spoon for several months now. But the only thing she gets by spoon is her yogurt in the morning. And to be honest? If I pick up dried-up yogurt that I didn’t realize got catapulted across the kitchen ONE MORE TIME, I just may scream. And she’s usually so hungry by breakfast time that she doesn’t have the patience to try and feed herself too long.
Yeah, yeah- I know… Just a lot of justification, right?
Anyway, tonight for dinner I decided we’d try forking food instead of spooning. I needed something that she could chew with no teeth, but that was substantial enough to stab, but not so hard that she couldn’t get the fork in. I’m not picky, really.
The solution? Those horribly gross, sticky, stomach-churning Gerber’s raviolis.
They worked perfectly!
She stabbed on her own and got it to her mouth. Sometimes she needed a little help finding one to stab, but she made it through the whole meal! AND- not ONE fork was thrown on the floor! THAT is a success in and of itself!
On our way to a cleaner eating experience! Wahoooooo!
Monday, October 11, 2010
Piper LOVES her books.
She’s getting really good at hunting for books around the house and pulling them off the coffee table to “read” them to herself. Even if that means pulling off the 6” of
junk important, vital things that are essential to our daily existence that are on top of her book with it.
A couple in particular- the Pinkalicious books are a current favorite. I’m pretty sure she just likes the pink. One page in one of the books is all pink- she likes to turn to that page first.
Another favorite? Chick-fil-a has the If You Give a Mouse a Cookie books in their kids meals right now. And we happen to like those books, so I’m pretty excited. But most exciting? Piper can mess around with the books and if they happen to get ripped or torn or drooled on, I could really care less (not that any other book in our house is safe from the same potential demise, but ya know).
Piper decided that she was going to take a break from chasing and banging on the dogs this afternoon to read a story.
What a relieving day!
If you remember, Piper had an ophthalmology appointment scheduled for the day after her surgery. As if that was going to happen. Usually her ophthalmologist takes about three months to get an appointment- I wasn’t in the mood to put it out another three months (especially since we were already about two months past due, but that’s another story). Children’s is relatively close to our house (about 40 minutes or so), so it’s not a big deal to make multiple trips. But I do try to consolidate into the same day if at all possible. I had an appointment for her pediatrician today, so the eye clinic squeezed us in to their schedule today, too.
Only downside was that the pediatrician was at 11, and the eye appointment wasn’t until 3… But beggars can’t be choosers, right?
The pediatrician was supposed to be her 18-month check-up, but was scheduled for October instead of November. Go figure. It worked well, though, so that we could see her ped after surgery, and I got to talk to her about some of our concerns we’re taking to the ENT later this week. She said that Piper sounded better than she has in a long time, which was really reassuring to hear. And was really please with her development, both in skills and size, especially considering everything the last month held for her.
Piper’s growth spurt continues!!! She’s well over the 5% line (but no where close to the 10% line) for BOTH height AND weight (on the Ds charts, of course, but we’ll take it)! Her length is the spurt that really surprised me- she has ALWAYS been very reliable in that area!
We left and came back a couple hours later for the eye appointment. They were (miraculously) running on time- alleluia!!! The way the doctor was talking, before they dilated her eyes, it sounded like we were going to be leaving with glasses or a patch or something. You remember her funny face- Piper can cross her eyes/eye (yeah, one a time), but whether or not she’s doing it on purpose for a laugh or because her eyes aren’t working together appropriately isn’t something I can 100% guarantee.
So they sent us to another room to get dilated (which I was a little bummed about because they said they weren’t going to do it when I made the appointment, but whadya gonna do?), and to a nice little waiting room to wait for their effects (which, with Piper’s light blue eyes, only takes about 5 minutes, but they make you sit there for 30…). She had a lot of fun playing on the couches and chairs… And running down the hallway immediately after flashing me her “ain’t I cute? I’m gonna run, but you can’t do anything about it” grin. She also played with the sunglasses- who are they kidding? How many 1-year-olds really keep these things on? Seriously???
Anyway, when the doctor examined her said that she “went from a size 12 shoe on one foot and a size 6 on the other to a size 7 on one and a size 6 on the other”. Is her vision “normal”? No, not quite. But it is considerably better than it was six months ago. He said that he doesn’t anticipate seeing that kind of improvement over the course of a year, much less six months. I think the theory is that her little preemie eyes just needed that additional time to develop (eyes are kind of like airways- they take longer to develop the earlier you’re born, so it takes quite a while for them to catch up to their peers). Woohoo! So her eyes are more balanced than they had been, and they’re also seeing much better than they were. SO, we have the okay for ONE WHOLE YEAR!!! Can you believe it??? We have NEVER gotten a one year spacing with ANY of our specialists!!!
Now, if we can just get that good of a report at ENT on Thursday. I wonder if three good appointments in ONE week is too much to ask for???
Wednesday, October 6, 2010
So I hafta say- I cracked up at the number of people concerned with Piper’s well-being after my last post.
And I appreciate your concern- truly, I do! But it didn’t make me laugh less (seriously- I was cracking up).
I didn’t think about how funny the pictures looked until someone pointed them out- I was apparently over the top of her a little too much, so the angle of the camera was really off for those pictures.
So, in an attempt to keep the social workers at bay (I also understand that I probably use this joke too often- I can only say it because I am one, lol), I decided to show you what her crib actually looks like!
She likes to stomp her her bumper (looks like it needs to be straightened out and pulled up again in the back…) which can give her a little more height, but not too bad.
After all- her crib is one of the most fun places to practice her music, practice cruising, and do other miscellaneous aerobic exercises in privacy. No one likes to exercise in public anyway, right??? :)
Monday, October 4, 2010
Piper has, somehow, figured out the purpose of the baby monitor.
She has also figured out that the wall between her room and ours is quite thin. Well, maybe not as thin as downright echo-y.
So at 6 am, when someone decides it’s time to be up for the day, after she’s been up multiple times over the course of the night I’m greeted by a cacophony of miscellaneous sounds amplified by the nearby monitor.
And when I go in to get said child, this is the face I’m find.
And suddenly, the sleep deprivation-induced frustration is swept away and I’m left with a great big smile. Definitely the right way to start the day.
Saturday, October 2, 2010
Wednesday this week (I feel like a huge slacker- we’ve just been enjoying our hospital-free time!) Piper had her follow-up with the Heart Institute to get her stitches removed and to give her another check.
Kind of ironic that heart problems were the one thing we thought we had gotten out of, and we find ourselves in Cardiology…
Anyway, we started out downstairs and did a repeat chest x-ray since the one she had the morning she was discharged showed that her alveoli weren’t fully inflated (which was the suspected culprit of her needing the O2 when she slept).
We got upstairs to the Heart Institute for her appointment. The first nurse we met with was super nice. They took her measurements (the height growth spurt continues! Up to 26.5”) and checked her out on the pulse ox (up to 98%! Her high when we discharged was more like 94%, again because she wasn’t breathing as deeply as she should be). She took us to a room and we waited for another nurse. The second lady had the excitement level of my wooden fence outside. Is that mean?
Of course, the visit started with Piper showing off how little the surgery has affected her ability to do complicated yoga stances. The nurse, who wasn’t overly impressed (lol), took out her three stitches, which has to feel better. On the top and bottom of the incision, they had little stitches, under which they put a little metal clamp to keep it from sinking in to the skin. Totally makes sense, but had to feel even better to get removed. She did pretty good with them, but the top one bugged her and bled some. I’m glad to have it over!
Her xray looked perfect, which makes me think that her O2 levels should be better all around.
I talked to the nurse a little bit about what I can and can’t do with Piper. I told her about my dilemma in the learning to walk thing; she said that they really hate to limit post-operative activities when it means hindering developmental milestones. In other words, she wouldn’t say that it’d probably be okay, but if we did happen to catch her under her armpits, it wouldn’t be life-altering. I still haven’t quite gotten the nerves up to try it much; still gives me the willies…
Then she said that we were free-and-clear from Cardiology- whew! I kind of figured they’d want to see her before they gave her the okay to return to normal in 6 weeks. NOT that I’m complaining about one less doctor’s appointment.
Piper’s really starting to heal now. The glue they used on her was itching her- badly- and now that it’s pretty much completely gone, she seems to be happier, too. I still need to schedule the sleep study, which is on my to-do list for this week. I can’t believe that our follow-up with the ENT is week after next. Can’t say I’m quite ready for that.
OH- and a question for all the heart Moms out there- Piper’s sternum really sticks out now. She’s nice and pointy. You can kind of see it in this picture- just hoping that your kids did it, too- should sink back down, right???
Friday, October 1, 2010
Piper’s started this as-soon-as-my-diaper-comes-off-I-can-blast-off-like-a-rocket thing lately.
Which has ultimately led to a whole bunch of diaper-free time. I’ll admit that it’s probably hereditary, but I won’t tell you through whom. I’ll also say that
I the guilty party HAS outgrown it. Promise.
Piper blasted-off this afternoon, so I just let her wander around the house bottomless.
I sat on the couch and checked my email And like a good mom, I kept a very close eye on her. Looked up and saw this:
Apparently she wanted a new diaper on. She was going through our diaper drawer, pulling them out- one by one.
I can honestly say she’s never ASKED for a diaper to be on. She’s asked for her pants changed, but ultimately only to take them off.
It’s hard to believe that a child with a wardrobe the size of hers, Piper prefers to play in the nude. Go figure.