Friday, March 30, 2012

Still No Decisions

2 days out from the phone call from the pedi notifying us that the insurance company is denying the last round of Synagis, I'm feeling more comfortable with the situation.  We did get the packet stating the reason for the denial, and honestly I can understand both sides of the pancake so to speak: I get why they're denying April's dose.  The season is winding down, and there aren't indications that it will be unusually long.  Plus she already had 5 doses this season, and that's the normal average of injections.  But I also know that there are enough people out there testing positive that Judith's pedi is concerned and thinks she should have 1 last dose this season.

Last I knew, her pulmonologist was working on the doctor to doctor review.  I haven't heard either way what's going to happen.  We were supposed to go in this morning for the shot, but I called yesterday afternoon and made the decision with the nurse that we would cancel the appointment and reschedule if necessary.

Do I still think it sucks that she's not getting April's dose?  Absolutely.  Is it something to get super stressed over?  Probably not.  I've been talking with John, and we're formulating plans to put in place to help protect her until the season really winds down.  We'll just have to be a little more proactive, a little more careful.  It won't last forever.  And if anything, it'll be good practice for next year since she more than likely won't qualify for the injections because of her age.

Here's hoping that she doesn't manage to pick up RSV in the next few weeks...

Wednesday, March 28, 2012

Great. Just Great.

Last year, Judith got Synagis shots from February through April, no problems (she didn't get her first dose until she was ready to be discharged from the NICU).  This year, we knew we would be approved for the season because of her CF.  So why the hell did I get *that* phone call this afternoon?

Turns out our insurance, which has never given us problems, deemed it no longer necessary for Judith to receive any more injections of Synagis this year, as she has already received 5 doses and it is no longer medically necessary.

Let's see... where to start... I think we'll go with a big ol' eye roll, followed by 2 middle fingers.

Judith's primary pediatrician called this afternoon (well, one of the nurses actually called) and gave me a heads up about the problem because we're supposed to have an appointment for the last injection very soon.  They tried talking to the insurance company, but they weren't having any luck.  So they wanted our pulmonologist to talk to them instead and see if he can get the insurance company to reverse their decision.

6 phone calls later (including call backs from the clinic), I finally got the info to the right person and the doctor to doctor review was going to be happening.

Yes, we are at the tail end of RSV season here, yes, the reports are showing that cases of RSV are dropping, and yes, Judith already received 5 injections this year.  However, the concern lies in the fact that there are still enough positive tests for RSV that Judith's primary pedi is not comfortable with her going without the shots.  I didn't get to talk directly to her pulmonologist, so I'm not sure what his take is on the issue, but I guess we'll find out when the insurance company decides.

Getting the injections out of pocket is out of the question: the shots run on average $1600 per dose.

So what are we going to do?  For now, we're keeping our appointment and waiting to hear what the final decision will be.  If we can win the appeal and get it covered, we're good to go.  If not, that's going to throw a serious loop into our plans for at least the next 2-3 weeks, and we're going to have to be even more anal about people handling her.

This is beyond frustrating.

Sunday, March 25, 2012

We've Got Another Milestone

I think it's pretty safe to say that we have a walker!

Judith has been taking a bunch of steps independently (at least 8 at a time) over the past week, but she has really started taking off since Thursday or Friday!

Crawling or furniture cruising still seems to be slightly more preferable, but she's at the point where she just lets go and wobbles across the room without really thinking about it or pausing.  She's done it with things in her hands and without!

While I'm writing this, she's standing near the middle of the living room, in front of the TV, watching chef Anne Burrell cook.  Mother of the Year, right here.  Why am I sharing my toddler's growing bad habit, you may ask?  Because it's held her attention for a good 5 minutes, and not once in that time has she lost her balance!

Of course with walking comes a whole new set of issues, mainly the fact that Judith is going to bruise herself a lot more.  I'm prepared for this - I know it's a normal thing.  I have some kid-friendly band aids in the house in case she needs one, but hopefully she won't for a while.

Now I'm keeping my fingers crossed that she'll continue with the trend and want to walk more on Easter.  She'll be in a dress for the vast majority of the day, and dresses aren't exactly the best things to crawl in.  It's probably going to be a crap shoot depending on her mood that day, but there's no harm in hoping!

Tuesday, March 20, 2012

More Steps

Judith took 8 steps on her own yesterday, and took more than 8 (I couldn't count them all!) today!  Right now, I'm excited that she's starting to walk!  Come time for the Great Strides walk, she might be able to walk a small portion herself!  I'm keeping my fingers crossed that she'll be walking better by Easter, but I doubt she'll be fully independent.  Especially since we're about 2.5 weeks out.

My little 29 weeker is growing up so fast!

Thursday, March 15, 2012

NICU Developmental Clinic Visit #3

We had our 3rd NICU Developmental Clinic visit this afternoon - it was a long appointment, and we got mostly good news!

The neonatologist and the physical therapist both were pleased with Judith's progress!  She is within the normal range for her adjusted age in all areas except 1, where she is between her actual and adjusted age (she scored at a 14 month level in cognitive development).  They're keeping an eye out for a couple things, one of them being some low muscle tone, and she's been fighting that since birth.  She'll still sit in a "w" position, which apparently indicates the low tone, but her core strength is really improved, so that's a bonus!

They're recommending that we continue with Early Intervention, since she would still qualify based off of the areas she's lagging in.  The telling point for that will be her annual evaluation in April, and it will depend on the therapist they send to complete said evaluation.  Her EI therapist, however, thinks that with the progress she's seeing, she should qualify for a few more months of services.  We'll have to wait a month and see what happens.

The one concerning thing is her weight gain.  They did a digital naked weight instead of a naked weight on the regular scale, and she weighs 18 lbs 12 oz.  For her, that's kind of a big difference from the 19 lbs we thought she was the other week.  That also means she's only gained about 5 oz since she was at the CF clinic in early February.  It doesn't help that she's hit the picky toddler stage, and also thinks it's entertaining to feed the dogs (and they certainly don't help matters with their constant begging).  It's hard to strike that balance: the dogs get upset if I pen them in a separate room, and they think they're in trouble, and Judith keeps looking for them.  But she eats, and doesn't throw as much food on the floor.  On the other hand, if I try to not upset the dogs and leave them roam, 9 times out of 10 Judith waits for one or both of them to stand by the high chair and starts dropping food to them.  Obviously I'm going to do what's best for Judith, but it's going to be an adjustment period for all of us, and Buster & Lady will need to learn that they're not in trouble.

I'm also guessing that her increasing mobility is playing a factor in all of this.  She is constantly on the go right now, and I only see it getting worse once she starts walking.

Taking all of that into mind, I have no clue what they're going to say at our next clinic appointment if she still hasn't gained a lot by then.  In the meantime, we're going to have to try to push more high calorie foods for her and see if that can make a difference.

Wednesday, March 14, 2012

Outstanding Weather!

I cannot get over how insanely awesome the weather is right now!  Considering it's only mid-March, and we've gotten nailed with major Nor'Easters/blizzards around this time in the past, it makes me glad that spring has sprung!

I've had the windows open and airing out the house for the last couple of days.  Judith and I took a nice walk this morning, and she gave her new sunglasses a whirl - I'm sure I've mentioned it before, but this kid absolutely refuses to keep anything on her head for more than a few minutes.  My parents got her some cute sunglasses at Target the other week that have a strap that goes around her head so they stay in place.  They kind of remind me of Doggles, but for humans ha ha!  After Judith realized that the glasses were wonderful for keeping the sun out of her eyes (and probably once she realized how cute she looked since I kind of made a big deal about how she was "rockin' her new shades"), she left them alone.  They stayed on the entire walk!  Makes me feel a little more confident that once she gets glasses she won't be ripping them off of her face within .5 seconds of putting them on.

The dogs are enjoying the warmer weather as well!  Buster can be so poky when he goes out to do his business (his foster mommy always said he was a "good pooper"!), but lately he's taken some extra time to sniff everything.  Poor guy is having some problems with his allergies, and he's itchier than normal, especially when the air is super dry on top of it - much like it was today.  Even Lady, who is very much a run-outside-and-do-your-thing-as-quickly-as-possible girl, has been sniffing the air and enjoying having the windows open so she can bark at all of the neighborhood hounds walking by.  Both dogs have been slowly moving back to their favorite spring/summer/fall positions in the dining room, into the favored spot where the sun angles in and warms the floor.

I really hope this gorgeous weather holds out until Easter - it'll make for a very nice holiday if it does!

Tuesday, March 13, 2012

One Step Closer

To walking, that is!  My grandparents decided to swing by for a visit today - they had made their weekly trek to one of the local farmers' markets, and they bought me some asparagus and brussels sprouts (yum!).  So they wanted to bring it to me while it was still fresh, and also visit with Judith.  While they were here, Judith was playing with her great-grandpa's hat, and thought it would be awesome to take a bunch of steps independently!  She took 4 steps, paused a bit, then took 3 more!  This is the 2nd time she's taken about 4 steps alone - last Friday, she took 4 independent steps for my dad while I was at work.

3-4 steps seems to be her maximum at this point, and she only does it when she's holding/is distracted by something.  She furniture cruises and walks with her push toy like a champ, though, and all it's going to take is her building up her confidence more and taking off.

Fingers crossed that she'll be walking by Easter - she's wearing a dress, and right now has a fit because she can't crawl properly in it.  So if walking means it'll save us a tantrum or 2, I'll take it!

Saturday, March 10, 2012

Some Much Needed Alone Time

John and I were lucky today that my parents were available to babysit Judith.  We got some gift cards to Applebee's (from my parents - thanks, mom and dad!), and I suggested we take an afternoon or evening to get away from everything and spend some time with each other.  So we took a few hours this afternoon to do some shopping and grabbed a late lunch/early dinner.  It felt nice to get away, but at the same time my anxiety was flaring up a bit and I was worried about Judith.

It's not that I don't trust my parents - I really do, and they know what they need to do to care for her.  I'm so accustomed to being with Judith 24/7, and it's very hard for me to let go enough to enjoy the rare moments I do get that are toddler-free.  Even when I'm working, I call at least once a day to check in.

I really need to learn to relax...

Friday, March 9, 2012

Donations Are Starting To Roll In!

I can't begin to express how much I appreciate the donations our family team is receiving!  The walk is getting closer, and seeing people starting to donate is giving me warm fuzzies - people care so much about Judith, and want to help kick CF in the butt!  To everyone who has donated so far, I send you a HUGE thank you!

It's been a slow week around here.  Judith is still working on walking up and down the stairs. Going down is getting easier, but the going up part is still a struggle for her.  Her legs are really bent, and I really believe a big part of the problem is that she's so short - she has to stretch a lot to swing her leg onto the step to progress.  Crawling up is definitely less work, but she has to learn to walk up eventually.

And speaking of walking, the "goal" that I've been hoping for (Judith walking by Easter) is looking more and more likely.  She's getting very brave while furniture cruising, and many times this week she let go of whatever she was holding on to.  She walks easily with support, and behind her new Thomas the Tank Engine push/ride toy, but she just needs to get more confidence before she takes steps on her own!  She's tried it here and there, and gets a step or 2 out of it before bending over and crawling.  We're getting close, and that means a whole new element of fun will begin around here.

Saturday, March 3, 2012

15 Months!

No, I haven't forgotten about the month birthday posts!  Now that I have a mobile toddler who is into absolutely everything and is often too nosy to stay still to do a decent photo shoot, it's hard to keep up with taking specific pictures every month.  That, and it seems like once you get past a year, months aren't as important to many people.  For us, it's strictly a time thing, plus it's easier for me to do these quarterly since those months seem a little more significant (if that makes sense) - it coincides nicely with her well baby visits!  :)

So, Miss Judith, you are now 15 months old as of today!  You haven't been super busy with activities away from home, save for doctor/specialist appointments since we're in the thick of cold/flu/RSV season, but you did get to do some fun things.

* You had a play date with your friend (and her big brother and big sister!), and mommy had a get together with her friend!

* You've been going to church fairly regularly.

*We had a small concern that you were going pancreatic insufficient, and you were on enzymes for about 2 weeks before we found out that things are normal and you don't need them!  It's great news, and we're keeping our fingers crossed that you can continue down this path for over a year and a half before they can give you more of an all-clear.

* You take your straw sippy of Pediasure like a champ!  We can't find the berry flavor anywhere, and the medical supply store doesn't carry it, but you basically have a liquid banana split sitting on the shelves downstairs - you love the strawberry, banana, chocolate, and vanilla flavors!

* You've had many opportunities to visit your family and some of your friends, and you always enjoy spending time with them!

* Your eyes haven't changed, so we can wait until your next annual appointment to reevaluate.  That means you have a good 8 months between appointments, and a good 8 months when you can remain glasses free!

Judith's 15 Month Stats

Adjusted Age: 1 year, 2 weeks, 2 days old

Weight: 19 lbs

Length: 28"

Hair & Eye Color: You still don't have a ton of hair, but it's more than what you had on your first birthday!  It's got a reddish tint to it, sort of like mommy's.  Your eyes have more brown in them than ever, but there are still some bluish-gray flecks in them.

Teeth: 8!  In the last 3 months, you have been a teething machine!  You have 4 front teeth each on the top and the bottom, with more on the way.  You are currently working on some molars, and there might be others that are starting to work their way to the surface - I try to time the "inspection" of your gums for when we brush your teeth or when I know you'll let me feel your gums so I don't risk losing any fingers!

Clothing: You're wearing all 6-9 month clothes, but certain things are starting to get too short - it all depends on the brand and how much it's been through the washer/dryer!  By Easter, you'll be ready for 12 month sizes.

Diaper Size: Size 3 during the day, size 4 overnight

Meals: You eat whatever we eat, but you definitely have some things you don't care for (meat, for example).  You drink about 20-24oz of Pediasure every day!

Developmental Milestones: You have been busy in the last 3 months!  The list of new things you're doing includes:
* constant, "nonsensical" babbling
* saying mama, dada, boo, di (for Lady), doggy, piggy, boon (for balloon).  You're not really consistently saying these things, but we're counting them as words since you've said them a couple times here and there!
* furniture cruising, lately with 1 hand
* walking with assistance - you move really fast with a push toy!
* taking 1-2 occasional unassisted steps when you're feeling extra brave
* imitating silly sounds mommy or daddy makes
* holding your sippy consistently
* hugging your toys, mommy, daddy, and your grandparents/great grandparents
* crawling up and down the stairs, and starting to walk down the stairs
* clapping, wiggling, bouncing/"dancing"
* stooping to pick up a toy or book and standing up unassisted
So as you can see, you're starting to have a developmental explosion!  We're hoping that you can be discharged from Early Intervention after your 1 year evaluation in April, but we won't be surprised if you qualify for a few more months of services because of the stair navigation.  But overall, we're so pleased and proud of the progress you've made!

Happy 15 months Judith!

Friday, March 2, 2012

15 Month Well Baby Visit

All I have to say is at least Judith's consistent!  We had another fun-filled appointment, this time with her primary pediatrician for her 15 month well baby check.  I'm super glad my dad was able to come and help me - it would've been next to impossible to talk to Dr. W. with Judith shrieking in my ear!

Judith was leery when we checked in, but as soon as she saw the nurses she started whining. The second we hit the exam room, she was in a full-blown pissed off state, and was clinging very tightly to my dad.  It was an adventure undressing her and getting a dry diaper on her for an accurate weight!

She continued to shriek as the nurse measured her head, her length, and weighed her.  Judith had herself that upset that once we got back to the room she puked all over my dad's shoulder and the floor.  This was a new experience for us - not so much the puking, but her getting that upset that she puked.  Lesson learned: don't feed her a lot before these appointments until she gets better about doctor visits!

The good news is she gained about half a pound since we were at the CF clinic last month, and she's back in the 3rd percentile for weight!  She weighed 19 lbs and was 28" long (still not on the charts, but we'll get there eventually).  I missed what her head circumference was because of her screaming, but I do know that she's still in the 10% for that.  She's following her own curve, and her pediatrician is pleased with that!  Granted, we'll have to wait and see what her CF team says at her next clinic visit, but I'm hoping that she's back on track for steady weight gain!

Everything else looked good too: her lungs were clear (yay!), her ears looked good, her joints are moving properly, and she's not showing really significant delays developmentally (at least nothing more than what we would expect because of her prematurity).

I knew Judith would be getting her next Synagis shot, but I didn't realize she would get 2 more shots.  I thought we were caught up with everything and she would get more of them at her 18 month visit, but she ended up getting 2 more today.  So she had 3 shots, but 4 needle sticks because of the pesky Synagis.  My lack of realization with the shots is solely my fault - I forgot to check the CDC's recommended schedule before this appointment, so I need to remind myself to check it before her 18 month so I'm better prepared and not surprised!