Spring Clinic Visit

This particular visit was intended more as a follow-up to the possible pancreatic insufficiency we thought Judith may have had, but as we all know she's sufficient, so this visit turned into more of a standard visit.

Things are still looking good!  Dr. Graff said her lungs still sound clear, and he's working with the insurance company to get her approved for Synagis one last time this season.  We're still a little bit concerned about her weight gain: she's up to 19 lbs 5 oz, and still around the 3% mark on the charts.  At least she's back on the charts this visit!  The nutritionist and I are going to work on charting what she's eating to see if we can find other ways to boost the calorie content of her food.  Part of the problem is her ever increasing mobility, and now that she's walking it's only going to make things worse.  And both the nutritionist and Dr. Graff reminded me that when we adjust Judith's age, she's really not doing bad with her weight.

One of our concerns is her poop is looking really mucus-y at times.  I was just assuming that she's swallowing a lot of mucus right now, and instead of puking it out she's pooping it out (it's a wonderful visualization, I know).  Since I'm definitely concerned about her weight, and her team is a bit concerned, they're going to start testing for some other possible conditions that could be in play other than the CF.  Since we had to do her annual blood draw today, they're going to run a test for celiac disease at the same time.  We don't think she has celiac, but they want to start there to rule out the possibility.

We also talked about what we need to do with her if she is still denied the last dose of Synagis (other than the common sense things, which we've been doing all along even with the shots).  We have a list of a few different symptoms to watch out for that could indicate she picked up RSV somewhere along the line.

Hopefully the insurance will accept the team's appeal and will approve her shot, and hopefully we can go and get it by the end of the week.  In the meantime, we'll have to wait until after Easter to get results for most of the tests they're running.

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...

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.

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!

Synagis, Round 80 Billion

Not really, but I can't remember what round this is - 4 maybe?  The important thing is the dosage is in her, and we have another month of protection.

Here's the kicker though: Judith had a repeat performance of last month at the pediatrician's office today.  Know what that means?

She remembers.  Life just got 1,000 times more interesting.

Judith was happy and excited when we got into the car, and contentedly played with her bee during the trip to the pedi's office.  She was happy when I took her out of her seat and walked to the door.  The second we crossed the threshold, she got all serious and started scowling at the office staff.  She scowled at the nurses.  She had a small fit and kept trying to climb up the front of my sweatshirt when I was taking her pants off for her to be weighed.  She hit the scale, and screamed like she was under the cruciatus curse the entire time they were trying to weigh her.  She sat on the exam table, and scowled at some more nurses when they popped in the room to see her/say hi (she also gave them some major side-eyes, and the nurses thought this was hilarious - Judith was no more amused than she was previously).  She started screaming and crying when I laid her back onto the exam table.  Naturally she cried when she was stuck with the needles (which is to be expected), but that was way less of a production from her than all of the other screaming and crying.  What did I do during this time?

I laughed at her.

Mother of the Year, right here.

Of course I comforted her, and tried distracting her with her monkey and stuffed Olivia pig, but she lost interest in them rather quickly.  Even the paper on the table, which usually works wonders as a distraction aid, didn't keep her interest.

Could all of this just be a coincidence?  Maybe.  But it's doubtful, especially since she was worse this time than she was at the previous visit.

I'm glad that I had to take her today anyway, because some of the red flags that I've been monitoring were showing a little more, well, red today.  In the last month, Judith "gained" 4 oz (I use gained loosely, because she was weighed with a wet diaper, a onesie, and socks).  Couple that with the concerns I've had about her poop, and it was enough for me to make a call to the clinic to see what her pulmonologist thinks.  I passed on my concerns, including all of the symptoms I've been watching, and it was enough to warrant him to want to see her sooner than her previously scheduled appointment.  I'm sure she'll be getting more tests done, including a stool study (which I was going to request anyway - it's been a while since the last one) to try to figure out what's up.

This could all be something simple, like she's not gaining as much from being so mobile, or it could be the start of pancreatic insufficiency and the addition of pancreatic enzymes to our daily routine.  Whatever case it is, I'm relieved that they want to see her as soon as possible so we can get on top of this before it becomes a bigger issue.

Synagis, Round 3!

We had yet another nurse visit for Judith's monthly Synagis injections, and it was an interesting visit (humorous for me, actually).  Since I didn't want her to be stuck too many times at her 1 year well baby, we delayed giving her the Hepatitis A vaccine until this visit.  So instead of 2 injections, Judith had to get 3, and now we're caught up again with her vaccines!

Judith started off the morning by throwing a fit in the car because she didn't want her hands covered.  Screaming like a banshee is apparently the new way to express this desire.  It was about 15 degrees out, so there was no way I was uncovering them for the car ride (that, and because my car's old it can take a while for the heat to really get going, even after allowing it ample time to warm up).  I tried reasoning with her, but the only thing that worked was driving, and a little more than halfway there she gave up and relaxed.

We entered the pediatrician's office, and I took off her cold weather gear, and she was relatively happy, yet very serious-looking - this is her new thing to do, looking serious whenever she's in a doctor's office, church, etc.  The nurse called us back, took us to the exam room, and asked me to strip her down to her diaper so we could get as accurate a weight as possible (as I believe I've mentioned before, they base the total dosage for Synagis off of her weight, so a naked weight is necessary).  Judith decided to try something new this visit: screaming her head off like Voldemort was lurking at the scale, waiting to hit her with a cruciatus curse.  Normally, the kiddo will roll over and try to crawl all over the scale, so I'm used to her giving the nurses a hard time at weighings, but this was hilariously ridiculous.  I'm laughing at her, and was baffled at the same time - I'm hoping this isn't going to be the new normal every time we go in there for something.  The good news is she now weighs about 18 lbs, so she's still gaining (yay!).

Naturally she screamed when she got the shots, but what kid wouldn't?  The synagis is definitely the more prolonged torture of all of the shots, and I feel bad for her, but hey - you do what you gotta do.  I'm starting to wonder if she's at the very early stages of association with things - she did hear me mention "shots" and "synagis" a few times this morning, and once she saw the nurse that usually gives her the vaccines, she tensed up.  It's going to be interesting to see how she reacts when we go back next month for round 4.  Her reactions today could very well have been a fluke, so we'll wait and see.

Cold and Flu Season is Here...

... and we may be fighting off the first cold.  I noticed that Judith has been coughing more toward the end of last week, and after the big weather change Thursday into Friday, it sounded wet.  I called the clinic first thing, and they put her on an antibiotic immediately to help prevent anything else from taking over (they like to treat all CF patients aggressively to ward off any potential problems as soon as they can).  Poor peanut hasn't been herself - she fell asleep on her back twice on Friday, and didn't roll over to settle in like she normally does.  Her appetite has gone to pot, and she's not taking in as much as she was before.  Combined with some major teething, she's turning into a hot mess - not that I blame her.  :(

The first thing I thought of while making the call to Hershey was "Thank God we got her first Synagis shot into her a week and a half prior!"  Any exposure to RSV, and the vaccine will help prevent it from growing further, but I don't think it is RSV since she hasn't had any other symptoms so far.

Anyway, her pulmonologist put her on a Sulfa antibiotic to help with the cough.  Cue a small panic on my part - I'm allergic to all sulfas, so now I have to watch her closely to make sure she doesn't develop a rash.  So far, so good; my allergies didn't turn up until I took it 2 or 3 times, and since this is her first time (I'm assuming - I can't remember if she had any sulfas when she was in the NICU) I'm hoping we'll be good to go.  Trying to get her to take it is a completely different story.  We have a thicker oral injector the pharmacy gave us since she's getting a teaspoon twice a day.  It's a slow process, and we can only give her about 1mL at a time or else she won't take any of it, and even then she still spits some of it out.  Apparently medicinal grape flavor doesn't fool her.  Naturally, she manages to get her hands involved, smearing some of the antibiotic on them, and attempting to stick them in my mouth.  I'm probably overreacting, but I really don't want to run the risk of ingesting some of it and ending up with a bad rash for Thanksgiving.  If I didn't know better, I'd say she's trying to get revenge on me for forcing her to take the stuff.  Only 8 days more of this...

As for the teething front, I am happy to announce that there are some definite bubbles on Judith's gums!  I managed to peek inside her mouth yesterday, and there are some prime spots ready to come through soon, mostly on the upper left side of her mouth.  Oddly enough, it looks like she's cutting her upper canines first, but the other front teeth don't look like they're far behind.  I can see them lined up under the gums, and Judith is gnawing on anything and everything she can get her hands on.  I still hold with the stance that we're lucky in the teething department - so many moms that I talk to seem to have it much worse with their little ones, and I count my blessings that she seems to handle it relatively well (even though it still has to hurt a ton).


Yesterday was super exciting!  I got to meet another one of the wonderful ladies I talk to online, and she took Judith's 1 year photos for us!  She is super talented, and such a nice person to be around - I really hope that we can get together again sometime soon!  Once we get the link for the proofs, I'll post 1 or 2 so you can see the great job she does!

I know this is long already, but I have to share a funny story about the doggies (and frankly, I don't post about them much and feel guilty about that sometimes haha).  John had his laptop at my parents' house, and when we got back from pictures he was working on some church stuff.  He left the laptop running downstairs, and came up briefly to look at a present idea for Judith.  Little peanut needed a diaper change, so I had to run downstairs to get the wipes.  Buster felt the need to follow me down, and next thing I know he's barking at something.  Buster doesn't bark often (not like Lady, who will bark at a speck of dust floating by outside because it dared stray onto her turf), but when he does, it's usually because he doesn't like something (like a cat, another dog, or a rabbit).  I was upstairs, and his barking continued.  My mom asked who was barking, and I said it was Buster!  My grandmother couldn't figure out what he was barking at either; after a few more minutes of this, John finally called him and he ran upstairs.  A couple minutes later, he followed John downstairs, and began barking again.  This time we figured out what the issue was: Buster apparently didn't like the floating balls screen saver on John's laptop, and was barking at it!  He did this once before with a makeup model on one of my magazines, and it was just as funny then as it was yesterday!  He's so weird, but so entertaining at the same time!

New 9 month Stats

Judith had her 9 month well-baby appointment today, and things are looking good!

Weight: 15 lbs
Length: 24 3/4" (I know that's less than what I posted in her 9 month post, but that's what they got today haha).

Her head is in the 10th percentile, her length still isn't on the charts, and her weight is in the 3rd percentile - all of these are based off of her actual age.  If we went by her adjusted age, her percentiles would've been 25-10-25 respectively.  Her pediatrician and I are happy with her growth, because it's been steady and consistent so far.

She got her last Hepatitis B vaccine, and got her flu shot.  She goes back in a month to get the 2nd dose - she must have 2 doses this year because it's the first time she received it.  She was flat out pissed about being stuck with needles today, but thankfully she got over it quickly and is now sleeping.

We discussed Judith's vision, and her pediatrician noticed right away that something's up.  I got a referral to 3 different opthamologists, so now I need to call and see if they take our insurance and can set up an appointment soon.

Her pediatrician has this year's round of Synagis ordered, and apparently Judith's at the top of their list this year.  Our insurance should cover it (she has to have it because of the CF), and I'm hoping that the MA will pick up any copays from the primary so our out-of-pocket costs will be minimal (if anything at all).

Unless she gets sick, and with the exception of the shots, we don't have to go back until her 1 year well-baby exam.  I'm happy and sad at the same time, because that means I won't have to drag her out in the cold as much, but I'll also have a toddler at that appointment.  She's growing up way too fast!

Teething

We have officially entered the stage many parents dread.  We have a teether - the lower teeth are very visible under the gums, and are starting to push up against the surface.  Judith has been absolutely miserable all day, and I'm about ready to pull my hair out.  It didn't help matters that I put her in her adorable Carter's crab romper (it has a smiling red crab on the butt), because every time I put her in this outfit she immediately decides to emotionally imitate the depicted shellfish.  Add that to a teething baby, and fun times ensue.

The day wasn't completely insane - Judith had a weigh-in with her pediatrician today.  She had developed some congestion and a bit of a runny nose yesterday, and her pedi said it doesn't look like it's concerning, and is more than likely a part of teething.  Knock on wood it stays that way.  Everything else checked out good - lungs are clear, and she gained 2 lbs. since her 6 month appointment (she now weighs 14 lbs 4 oz).  I scheduled her 9 month well baby visit (and next round of shots), and if the flu shots are in Judith will get her first one at that time.  Her name's also been submitted for the next series of Synagis shots - she'll get the full course this year, starting mid-fall with the last shot being given in April.  That means 6 or 7 monthly visits to the pedi this year, dependent on when the first shot is given (I'm figuring mid to late October).  I don't know if we'll have to go back under lockdown this year or not, and that's something we'll have to discuss closer to time.  Granted the kid's going to get sick at some point, and will more than likely get a cold this winter, but we'll still be as proactive as possible to keep the bugs away that could cause even worse problems for her.