CF Clinic

Today was Judith's quarterly CF clinic visit, and I'm pleased to say that I don't have a lot to report!  Things are still looking and sounding pretty good, and we're fortunate that she is remaining healthy.  She was her typical 2 year old self, loudly declaring "No!  I don't like that!" whenever she could, but once Dr. G. started examining her, she was fine and very cooperative.  Of course we have to wait a week for her throat culture results, but based off how she's doing I'll be surprised if anything has significantly changed since her last visit.

There was 1 thing that we have to really work on, and that her team is a bit concerned about: she actually lost weight since her last appointment 3 months ago.  Today she weighed in at 23 1/2 lbs, which means she's also down 2 lbs from her last appointment with her primary pediatrician.  We definitely have some work to do to try to fatten her up and to keep her from losing even more weight.  On a positive note, she is 34 1/2", so she's still doing well in the height department!

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.

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.

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.

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.