Doctors, round 318,297

…or so it seems.

This is Piper’s new seat at the doctors.  Anyone who insists on going to Children’s at least once a week for any extended period of time has the privilege of occupying The Chair of Shame.

We started the steroids for Piper 10 days ago.  They said it would take 10-14 days for it to get to its full effect.

And seeing as she sounded horrible on Saturday, and we haven’t made any progress, I wanted to call her pediatrician to see if they had any other ideas of things to try while we wait for our ENT appointment next Thursday.  Especially considering we have a four hour flight coming in just a couple days.  I fully anticipated leaving a message for her doctor with the nurse, and just chatting with her over the phone today.

But when the nurse proclaimed the likelihood of a significant attack when we get to altitude on the plane, a trip to the other side of town wasn’t sounding so bad.

So we went, and talked tot he doctor for a bit.  We did find out some stuff.  The best part was that her the screening test for celiac, along with her liver and pancreas function tests, came back fine.  Wahoo.  One less thing to worry about.  I also got to see her chest xrays from the last time, and saw what the radiologist said could be a slightly enlarged heart.  I saw her 13th rib (yup- she has one), and the little clip they used when they took her gallbladder.  AND we saw her teeth.  They are there!

However, everyone in the clinic is stumped about what’s causing Piper’s junkiness.  They assured me, again, that she’s not contagious, so at least we have their blessing to go on the trip, including the airplane, but more importantly, including the pool.

And since we’re now pulling at straws, and exhausting all non-invasive options first, we were also sent us upstairs to the Heart Institute to verify, one more time, that her heart is okay.  The symptoms she’s having could be related to heart failure, and although we had a fetal echo, and she had an echo right after birth, they wanted to be ultra ultra sure, which I appreciate.  We got those results tonight, and everything was perfect.  They did say, though, that they couldn’t unequivocally state that her PDA is closed, so we’ll have an ultrasound in the next couple of months.  It was open at her last echo, but again, that was when she was brand new, and being a preemie, it was totally normal.  They haven’t been able to hear it since she came home, but want to be sure that it’s closed. 

So I guess that I get to take my kid to Orlando sounding like she just may be dying.  I asked the doctor if she could write a sign for me that stated she wasn’t contagious.  You know, to hang around her neck.  Highlighted, in bold.  I’m glad that she’s not in any kind of distress, and it’s not bothering her too much (although she gets MAD at the coughs every once in a while- who’d blame her??).

Wait. and. see.

I hate that approach.

Shopping trip with the boys

Yes, that’s right.  The boys.

Unfortunately, that meant shopping at the camping/outdoor supercenter that just opened up. 

And when you have a former Marine for a dad, and an uncle who used to be in the Navy, you can bet that a substantial amount of time will be spent in the military supply section.

Piper tried her very hardest to convince them that camouflage is just not her color.  She humored them for a few minutes…

…and then it started going downhill.  Quickly.

Piper didn’t care if it was a Marine cover.  She did not did not did not. 

The level of dissatisfaction that was reached at this point could only by cured by:

Yup- pink cowgirl boots.  Pink cowgirl boots.  Too bad they started at size 5.  Her feet fit into the ankle holes, but she was happy enough to just play dress up for a minute.  Besides, playing dress up with Uncle Justin and Daddy is enough to make any little girl happy (even if she had been thrown into a pile of sea bags not five minutes before).

Next came sunglasses: …which stayed on precisely as long as it took to take this picture…

And bitty chairs: 

End the evening with a lounge on a hammock, and you’ve got yourself a fun trip!

Piper’s learning early that shopping is good.  It doesn’t matter where, shopping is just plain good.

One appointment DOWN

…and the angels rejoiced…

Today we went back to the GI specialist to talk about Piper’s difficulty with drinking whole milk.

I’ve been pretty nervous about it; I hate having to rationalize why we do things, how we decided to do it, and why we think it’s a good idea.  I feel like the doctors we know and see often trust my instincts, but when we see someone new, it’s like we always have to start from scratch.

One nice thing about the clinics at Children’s is that when you see a clinic, they will always keep you with the physician you saw the first time.  So, the guy we saw when Piper needed her gallbladder out is a really in-demand guy, but we still get on his priority list.  Which is great, because we really like him.  We talked about her cholecystectomy.  He was really glad to hear that it was going so well, and said that he was glad to get input that he could pass on to other parents in the same boat.  He looked at her growth chart, and said that even though she’s l-o-w on it, he was happy with the pattern she has struck. 

…and the angels rejoiced…

Theeeen we talked about the issues she’s been having.  He was a little stumped, and offered a few ideas.  One possibility is that there’s a stone that got stuck in a biliary duct somewhere, and that’s what causing it all.  So we went ahead and tested her pancreatic and liver functions, just to be sure that there’s nothing obvious going on there.  Another option is that her body just hasn’t adjusted to not having a gallbladder.  The bile that the gallbladder emits helps in digesting those fats, and without the proper amount of bile, fats aren’t necessarily digested appropriately.  If this is the case, there’s a good chance that as time goes on, her body will get better at functioning without the gallbladder (which has been, by the way, my theory from day one).  So, the conclusion is that, unless there’s a stone stuck somewhere, there’s not a lot we can do at this point.  In fact, he said that, although they’d much rather her be on whole milk, if all it takes is to move her to 2%, there’s not much discussion needed.  If she gets worse, however, and has more problems, we’ll look in to some other alternatives. 

So, since we were doing a blood level to check her pancreas and liver, we went ahead and did the celiac screening, too, since there’s an increased incidence of it in the Ds population.  So me, being the wonderful mama I am, sent Luke by himself to do the blood draw, because it’s about time.  Long story short, about half an hour after they were called back, I started getting nervous.  I stepped back to the door and could hear Piper screaming.  I asked the nurse to make sure it was my kid, and I went back.  They had to stick her in both arms, and fished both times about 10 times.  And they still had to suck it out in the end because she was clotting too quickly.  Poor, poor Piperdoodle.  That’s the first time we’ve had any trouble getting a blood draw.  I’m pretty sure that there are folks in the lab who “specialize” in newborns, and once you hit a year, you don’t get them any more.  But, since Piper’s really the size of a less-than-12-month-old, I’m thinking about requesting one of them next time. 

…and the angels did not rejoice…

So, anyway, we’ll get the blood test results tomorrow or Friday.  If they’re clear, we don’t have anything to do/not to do unless something goes awry.  Phew!

And, for you viewing pleasure, I finally got a picture today of Piper’s half smile she’s been sporting lately when she’s playing coy.  While we were in the waiting room in the lab, she was using the stools on a kiddie table as a standing table.  Guess that’s what happens when you’re barely 25” tall. 

Guess What Guess What Guess What?!?!

Guess WHO has FINALLY decided that she can get into sit ALL ON HER OWN???

She started last week; and now that she’s got it down, she’s going in and out of sit over and over and over again, because she thinks she such hot stuff.  And then she gives herself a rousing round of applause. 

She’s also started crawling over to her little tables, sitting up, and pulling up to stand from there.  I’m thoroughly impressed.  And completely and totally, over-the-top, absolutely excited. 

The first sit:

The second sit (while diligently reading her instructions from the pediatrician):

I’m totally bummed about the color on this one, but her face is just too cute not to share.  She was playing peekaboo with our check-out notes, and thought that she was really funny.  Not as funny, though, as when she picked up the paper from the table and was getting herself underneath that…

I’m trying to get a good video of some of her funny stances when she gets up.  She’s getting into the bear crawl stance very easily these days; her therapist thinks she may decide to bear crawl next.  We’ll see- but it’s pretty funny to see Piper A-framing around the house.  My goal for tomorrow is to get a picture.  The camera’s ready!

3 Rounds of Drama

I feel like I’m about four eons behind in the whole documenting-our-lives bit.  Maybe five.  I’ve lost count.

We had such a busy week, but now that it’s done, we’re finally on countdown for our trip to Florida!  Wahoo!!!  This is our little travel-buddy, Sawyer (can you believe that hair???).  Cuteness will abound, I know, but we’ve had discussions with the girls regarding their ability to smile.  Together.  At the same time.  Every time we took out the camera this day, one girl would start crying, and the other would follow suit.  Not such a good thing. 

Wednesday, Piper went back to audiology.  I was really hoping that she’d do better this time (she really seems to hear all the sounds they put through the speakers, but she keeps failing the eardrum part…).  Last time, we were in the booth for about 45 minutes to an hour.  If she didn’t cooperate with one sound at one frequency, they’d try a couple times to see if she was just being stubborn (which, really, she was quite often).  This week, we were called back, a few minutes late, even, talked for a minute or two, sat in the sound booth, did the eardrum thing, talked for a while, checked out, walked to the car, and were out of the garage within 35 minutes of our appointment time.  I was not impressed.  I really don’t think that they tried, at all, in the booth.  I was really miffed because I expect more than that from Children’s.  And we got more than that the last time at the different campus.  Anyway, her recommendation was that we go back and see our pediatrician to explore if there were any medical reasons (ie ear infections) that could have caused the eardrum mess, and to go back and see them about four weeks after we saw the ped.  Then, if she still failed there, they’d send us to ENT and probably schedule an ABR.  I looked at the lady and asked her if she had any idea how many times we’d seen our pediatrician (including just four days before).  The she admitted that we could probably just go straight to ENT, “but it’ll take you a long time to get in”.  My thought is, if it’s going to take that long to get in, why am I wasting my time getting in with the pediatrician, going through another one of these, and then waiting to see ENT???  I was not thrilled.  At the end, the audiologist also said, under her breath, that they couldn’t get the probe in her ear very well, and it may just be that her canal is too small for the probe itself (yes, one side is smaller than the other).  Don’t get me wrong- if there’s something up in the hearing department, I want to know about it so that we can fix it.  But I don’t want to wait another eight months trying to figure it out, either.

So that was Round 1 of drama last week.

Round 2 is a continuation of the breathing/coughing drama from the week before.  Remember how we started Piper back on Prevacid to see if it would help out her cough junk?  Well, Thursday was the last day I could give myself the okay to use the well-it-takes-a-few-days-for-the-Prevacid-to-work excuse, so when she woke up coughing and sounding terrible on Friday morning, I called the doctor.  I chatted with the nurse for a few minutes and decided that, since it was a long weekend, to go ahead and take her back in just to be on the safe side.  So they took some chest x-rays (which literally only added about 10 minutes onto our visit- I was amazed) and checked her pulse-ox, just to be sure.  They said that they could see some swelling in the smaller parts of the airway (or something like that?), but nothing that’s surprising (she said it was exactly what she was expecting to see), and no pneumonia or anything, so that’s good.  And she was satting at 99-100 still, so that’s good.  We went ahead and put her on the Flovent inhaled steroid for a few weeks to see if it helps.  Downside to that is that it takes about 10-14 days to really work, which seems like an eternity.  We’re praying that it works!!!  I talked to the ped about our audiology appointment, and she groaned with us.  So, we decided to contact ENT and try to get an emergent appointment based on the breathing issues, and talk about the hearing at the same time.  Perfect.  So, we see them after we get back from Florida next month, instead of several months down the road. 

If you think we were done with the drama for the week, you’d be wrong.  Somewhere in the middle of all this, Round 3 started when we put Piper back on whole milk after our conversation with the ped last week.  She was on it a grand total of a day-and-a-half before she started screaming in pain.  I took her off the whole and put her back on 2%, and within 12 hours, she was fine.  Fine.  <<sigh>>.  Who knows what’s going on there.  Milk intolerance doesn’t make sense since she can handle everything else.  Really seems to be the fat.  We called to get the GI appointment, and they weren’t going to be able to see us for about three months.  But then they realized that Piper’s only a year old, so we got in in a month.  And then the nurse called back (in the middle of the screaming episode) and said that we could get in on the 7th.  As in this coming week.  So, that’ll be one more thing out of the way. 

I’m not really sure what happened to the “we don’t have to see you until she’s 15 months old” bit from the doctor.

I’m considering requesting that they say nothing regarding the timing of our next appointment next time- I’m fairly certain that in her little baby mind, three months just seems way too long, and is creating nasty ways of getting back.  And I am so over it.

New Perspectives

July 4th was always about burgers, corn on the cob, watermelon, and fire works.  I always liked the fourth- it just feels like society is different for this holiday.  More cohesive…  more of a community.

When we found out I was pregnant, we were given a due date of July 4th.  Everyone kept saying that we were going to have a firecracker baby.  And once she started kicking and moving around, I was afraid they were right. 

However…  our little firecracker had plans of her own. 

Piper came home from the hospital on June 29, her 7 week birthday.  The fourth was her first official holiday, and since it was supposed to be her due date, and because she was finally home, we had a “big” (big for us, anyway, seeing as Piper really wasn’t allowed to go anywhere or do anything or be around anyone) get-together with my parents, grandparents, and brother and sister-in-law. 

I bought a little First Fourth of July outfit (complete with socks) before she was even scheduled to come home.  I put it through the dryer on HOT to try and shrink it enough so that it didn’t fall off.  She weighed just over five pounds, so even the newborn-sized onesie was waaay too big. 

I used to like the fourth.  But now…  Now it’s even more fun.  Now it means even more.  And I’m so thankful for those who shaped our country into what it has become.  Our daughter has a chance because of what our country believes in and stands for. 

Happy America Day!

Princess Practice with Piper

P is for Patriotic!

Obviously the US doesn’t have any real princesses for Piper to learn from,  so today’s lesson is based on her observations of Lady Liberty, because, well, apparently that’s as close as we can get.

Notice the form, anticipation, and seriousness of her attitude.  She may have taken the stoic nature of the Statue of Liberty just a tad too far.  In cuteness, however, Piper has her beat.  Not that I’m biased, or anything. 

 

After the grueling practice, she decided to try her hand at her own little form of color guard.  This may be an activity in her future.

 

After all the flag waiving, her excitement sent her into a roaring rendition of America the Beautiful.  Complete with full vibratos.

Happy, Happy Fourth of July to you!  Hope you have a wonderful red, white, and blue day!!!