Saturday, April 28, 2012

We're Getting Closer!

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Wednesday, April 25, 2012


Judith gave us our first long, rough night.  Even when she was first home from the NICU and eating every 3 hours, she was easy to handle.  How we've managed to go almost 17 months without incident is beyond me, but when this kid lets loose, she lets loose big time.

We know she's teething - she's been working on molars for months with no results.  She's been fighting off the pseudomonas fairly well, but on top of those 2 factors we think she had her first nightmares... and it was recurring.  There's nothing like getting home later than you think, doing her breathing treatment, putting her in bed and falling asleep yourself only to be awakened about an hour later, just as you're hitting the nice deep sleep phase, by a shrieking toddler.  The wailing was cannily similar to the way she screams in terror at the pediatrician's office and at the CF clinic, but it wasn't until the following day that I thought of that.  At the time, we were frantically trying to figure out what her deal was, console her, and try to get her back to sleep.

She didn't have a fever, but I figured her teeth were really bothering her.  All of the horror stories I've heard from friends about the one year molars were leading me to believe we would see 1 or more making an appearance within the next couple of days.  So I decided we should try some Tylenol to help with the pain - something we rarely have to do for her (thank God she's been an easy teether so far).  A half hour later, she finally started calming down and would take some Pediasure and a mum mum.  She was dozing off with her straw cup, so we thought we'd be able to put her to bed and all would be well.

Wrong!  I was just getting ready to fall back into the deep sleep cycle after about an hour and a half when Judith started shrieking again.  We knew she wasn't hungry - there was no way, considering she downed about 4.5 oz of Pediasure the last time she was up.  We consoled her, and allowed her to doze in the bed for a few minutes.  Once we saw she was asleep, we tried putting her back in the Travel Lite.  She would scream, we'd pick her up, let her doze, and try again.  Lather, rinse, repeat.  Finally I gave up and said to John, "Just let her sleep in the bed with us."  We rearranged the dogs so Judith would have a space, and went back to sleep.  She slept the rest of the night that way, and eventually rolled herself onto her tummy into her usual comfy sleep position (and kept bopping me in the head with her hand).

I am not cut out for bed sharing, and neither is John.  Ironic, I know, considering we sleep with 2 furry, heat blasting bed hogs every night since 7/19/09 (24 hours after we adopted Buster & Lady).  Our queen size bed was just not made for 5.  Don't get me wrong: people who bed share safely get props from me, but it is not for us.  John & I couldn't get comfortable, I was constantly worrying that one of us would roll over onto her, and the dogs were beyond pissed that they lost their spots between us (and their access port for the nightly parade/game of "Go under the covers, go on top of the covers").  Judith slept like a log once she calmed down.  Figures.

The following day, we think we figured that she had a nightmare, and it kept playing over and over in her mind.  I said that she was probably dreaming that we took her to one of the doctor's offices, and she was getting shots or something.  It kind of stinks that we'll never know what was really bothering her, or what she was dreaming about (if she was, in fact, dreaming).  At least last night she slept through the night without incident, and hopefully tonight will be the same.

Saturday, April 21, 2012

Sad Pups

I knew when I went to my parents' for a visit today (Judith in tow, of course!), I would be thoroughly sniffed and inspected when I got home.  What I wasn't expecting was dealing with 2 sad Bostons as a result.

Long story short, my dad had some surgery and still has stitches in.  With all that's happened, the dogs haven't seen him for at least a month now, and they cannot figure out what's going on.  Buster (a.k.a. Mr. Sensitivity) is taking it especially hard, and is constantly moping around the house - he absolutely loves my dad, and is constantly at him for scratches.  Even Lady, who is usually pretty laid back and carefree, is starting to show a lot of disappointment and sadness, especially if my mom comes to our place without my dad.

I'll admit it: I'm one of those strange pet parents.  I've gone to great lengths to let the dogs know that my dad is ok, and the other day I caught myself trying to explain things to them like they would actually understand.  I've held the phone up for them so my dad could talk to them, and they could sniff the little speaker hole.  To someone looking in from the outside, it probably looks completely ridiculous, but it seems to help a little bit.  Buster mopes around for a while after a call, but eventually he recovers and goes back to gnawing on one of his favorite rawhides or to snuggling under 50 different blankets.

My dad's stitches are being removed this coming week, and I'm hoping that a visit with the dogs will be in the very near future - I know they're going to go nuts when they see him!  And once Buster & Lady know that everything is back to the way it should be, the little rain clouds above their heads will disappear.  :)

Tuesday, April 17, 2012

Switching Up Routines

It's always hard for us when we have a major change to our routine, especially a routine that has been in place for a year!  It was our first day without physical therapy services, and I'll be honest: I was nervous about how Judith would react, and I wasn't sure what to do with myself since I was missing out on one of the rare opportunities for face-to-face adult interaction that I get in any given week (pathetic, I know, but such is the way of life during RSV season, especially when you don't have Synagis to back you up).  By 2:30, I was trying to figure out why it felt like the day was dragging, and I remembered it was because we wouldn't have PT today.  To celebrate, Judith decided to take a nap during the time when she was so accustomed to working hard.

We're almost a week into the breathing treatments, and we've had a good stretch of cooperation!  It helps that I discovered the goodness of Mickey Mouse Clubhouse on Disney Jr. every morning - that show is like baby/toddler/preschooler crack, and Judith is hooked after 2 episodes.  As far as kids' shows go, this one is pretty good and doesn't drive me nuts like some of them (::cough cough Barney cough cough::).  It gets us through the majority of the treatment, and I'll take any special distraction we can!  She's also adjusting nicely to the mask.  I know that for many kids, the mask is a huge issue.  However, the more she's using it, the more she's adjusting to it.  I'm always amazed at how quickly she adapts to things, and I attribute a lot of that to everything she's been through in her short life thus far.  Plus it helps that she's used to using her spacer twice a day, every day - that has a mask on it, and Judith knows our key words for her treatment, so I can turn those around and use them during neb treatments!

Granted, I'm typing all of this and painting a glorious picture of this calm, cooperative toddler, and that's not exactly the case.  She has her moments, and today she was extra wiggly during treatment time.  Even so, I'm getting the bulk of the TOBI into her lungs, and that's the important thing.

I feel bad for Buster & Lady.  They're not terrified of the nebulizer, but they certainly don't like it.  The machine is loud, there's vapors in the air, and Judith looks like a little dragon breathing the mist through the mask.  For some odd reason, cords, tubes, and wires freak Buster out, and he's paranoid to jump up or go near an area that he perceives as "obstructed" (realistically, he can easily clear said cord, tube, or wire, but chooses not to unless we coax him... a lot).  Lady has taken to plastering herself against me while I give Judith her treatment - I love the dog, but it's mildly annoying when she does this and sinks into the crevice between cushions on the couch, making it hard for me to move if I need to readjust to Judith's squirming.  I know this is an adjustment for them too, and I'm hoping they adapt, otherwise I'm going to hate to see how they react once Judith can get The Vest.

Friday, April 13, 2012

Breathing Treatments and EI

No guarantees that I can keep this post short - sorry!  I'll break it into 2 parts though, because a lot has happened in the past couple of days!

Breathing Treatments
I gave Judith her first breathing treatment Wednesday night.  That was an epic fail: Judith screamed through the entire treatment, and it was the type of fit she normally reserves for the doctors' offices.  And since she had herself so worked up, she puked all over the place once the treatment was done.  So not only did I have to worry about remembering what I needed to clean on the nebulizer, I had to clean up the vomit in the PnP and the Step & Play piano, plus change her and supervise her to make sure she didn't get into the dog water bowls.  Fun times.

Thursday morning started the same way: she was refusing her treatment, was fighting me, and threw the mask with medicine cup attached on the floor... twice.  Finally I had her sit on the couch (I was right next to her with a hand on her in case she decided to bolt) and tried holding the mask at her face instead of trying to strap it to her head.  Throw in a little singing, and she was able to complete the rest of the treatment.  I felt much more confident about things after seeing what would get her to respond, and I filed it in my mind for the next daytime treatment.

Thursday night, she slept through the entire treatment, which was my goal (it was my goal for Wednesday too, but she decided to wake up).  Score!

This morning, she did well!  Yes, she still shoved the mask away and wanted to play with it more, but we got the bulk of the treatment into her lungs since she allowed me to hold the mask against her face for longer periods.

Now let's hope that she continues to do that well for the remainder of the treatments!

Early Intervention
Judith's annual eval was yesterday afternoon, and I am very pleased with the results!  Judith actually performed the majority of the tasks they were looking for, save for a couple things!

An hour and a half later, the paperwork was signed and we had the results.  I can't remember what all of the specific numbers were (we should get the report in the mail soon), but I do remember that she's at a 16 month level in gross and fine motor, which means we're discharged from PT services!  She's somewhere around 16-17 months for cognition, but is lacking in communication and speech - she scored around 11 months in those areas.  As a result, she qualifies for speech services, and we will get those moving within a few weeks once we set up a time with the therapist and whatnot.

If you are unfamiliar with how EI performs these evaluations, they score the baby/toddler based off of their actual/chronological age, so for a preemie, it often looks like there's a bigger delay than what there really is.  That's the case with Judith's speech and communication: if we adjust her age, she's actually within the normal range and would not qualify for services.  But because they base it off her actual age, she qualifies.  I'll do anything to help her get caught up to where she needs to be, and if speech services will be the final boost, so be it!

I was just thrilled to hear how well she's doing in so many areas, and to hear that she's almost completely caught up!  At this rate, she will be caught up by age 2, and that makes me happy to know how far she's come in such a short time!

Wednesday, April 11, 2012

New Nebulizer & TOBI

Judith's nebulizer came earlier this evening - a relief for me, because I feel better starting her treatments ASAP!  I honestly didn't expect the semi-fiasco we went through to get the thing.  A bunch of phone calls and 3 medical supply companies later, we were finally set with the proper nebulizer and all of the supplies we needed.  I picked up the TOBI earlier in the day, and it's been sitting in the fridge ready to go.

The insurance companies did end up buying the neb straight out of the gate, instead of doing a rent-to-own type of deal.  To me, that's the most logical move for Judith since it's likely we'll be using it more often in the future and whatnot.  For once, the insurance company agreed and thought logically ha ha!

Her mask is super cute - it's a fish, and I think she'll like to look at it!  I'm hoping that she'll adjust to it quickly.  She generally does well with her inhaler and spacer, so we'll see how this goes.  Tonight should be easy though: I'm definitely waiting until she's conked out for the night before giving her the first treatment!  Tomorrow, on the other hand, should prove to be interesting.

I would like to take a moment to state how grateful I am that John's work provides the option of a good insurance plan, and that the United States government is, at the moment, providing funding for Medicaid.  I can still remember talking with the social worker at our second appointment after we got Judith's diagnosis: she said that no matter how great your primary insurance coverage is or even how much money you make, it's important to get your child with CF on Medicaid to help cover the cost of treatments and medicines.  That has stuck with me for the last year, but today is when reality really sank in.

The nurse coordinator did mention over the phone that the TOBI would cost a couple thousand dollars, and double checked that we have Judith on Medicaid.  I said yes, that we applied after we initially got the info and have had coverage for almost a year now.  So I had an idea that the cost of this drug would be high, but we shouldn't have a copay (or much of one if we did have to pay).  On the drive to CVS, I reminded myself to check out the original cost of the meds, something I actually do for most of the meds we get for her because I'm nosy like that.  I went back to the counter, and the pharmacist handed me the bag: a big, brown, paper bag instead of one of the normal small, white bags - I knew we'd be getting a lot of medicine, but I didn't quite expect the pack to be quite that large.  Anyway, I made my purchase, and on the walk out of the door to the car, I looked at the "before insurance" price on the patient info card:


That's right, folks: that's a comma and 4 digits between the dollar sign and the decimal point!  Your eyes are not deceiving you!  And that's only for a 28 day supply of 56 vials (since she gets it twice a day).

This is why the social worker said CF patients need the extra coverage.

Now I'm waiting for the statement to come from our primary insurance showing the breakdown of the costs for the nebulizer.

Tuesday, April 10, 2012

Aw Crap

It's just one thing after another in our family right now.

This morning the nurse coordinator from the CF Clinic called me.  When the number popped up on my caller ID on my cell, I knew it was from Hershey, but I thought it was the nutritionist checking in per our conversation at our last visit.  Instead, I was getting a call about Judith's latest throat cultures.  Judith cultured positive for pseudomonas this time.

Oh shit.

I know this is a common occurrence in CF patients, but it's not really something you want to hear that a culture came back positive for.  They have the potential to cause a lot of problems, and they can be hard to treat.  But there are meds that can treat it, and how long she will need to be on them depends on how well she responds to them.

We did have the opportunity to participate in a study with Judith (provided she would actually qualify).  I'm all for participation in studies - heck, Judith is the result of a PCOS study!  However, right now, I decided to opt out and wait until she's a little older before enrolling her into studies.  Considering she's only about 13.5 months adjusted and we have the preemie issues we're still dealing with, I felt it was better to go with a drug that we know will work and has already been FDA approved.

2 scripts later and a few phone calls from the clinic to the pharmacy and medical supplier, we are set to get a nebulizer for Judith and a 28 day supply of TOBI (Tobramycin Inhalation Solution, USP) for round 1 of treatments.  CVS was able to order the meds, and I can get them tomorrow.  Her nebulizer should be delivered tomorrow as well, provided the insurance company approves it quickly.  After the 28 day cycle, she'll need to have another throat culture - if she tests negative, we can stop treatments, but if she tests positive we'll have to do another 28 day cycle and will keep repeating the process until she cultures negative.  Hopefully she'll culture negative in a cycle or 2.

Honestly, I've been bracing myself for the possibility of a nebulizer for a while now.  I know that we've been extremely lucky to have avoided it thus far: Judith's 16 months old, and between the preemie issues and the CF it's pretty damned amazing that she hasn't needed something like this sooner.

I can't wait to see what the total cost for the neb and the TOBI are going to be.

Sunday, April 8, 2012

Happy Easter!

Out of all of the seasons of the church year, Easter is by far my favorite.  Speaking the proclamation "Christ is risen!  He is risen indeed!  Alleluia!" has always been special, and in a way magical.  This year, though, those words feel even more special.  Realistically, we know the odds of Judith outliving us like any child should are very low.  We know that, because of her CF, death looms much closer.  However, that small proclamation reminds me that no matter what happens to Judith, she will be well cared for because of the promises of the resurrection.

But enough of my deep, brooding thoughts.

I love attending services at this time of year, and I can't wait until Judith is older and can appreciate (heck, more like can actually sit through!) the entire Triduum.  Last year I took her to Maundy Thursday services, because let's face it: she was still sleeping all.the.time. We had zero issues.  She was ok last year during Easter Vigil, but had a meltdown when she heard me chanting and I wasn't with her (she calmed down once I was able to go back to her).  This year, I didn't take her to Maundy Thursday because I knew Vigil would be a battle - thanks to the "raging success" (/sarcasm) we had on Ash Wednesday, I would've been happy if she made it through half of the service.  Ha!  She barely lasted through 1/4 of it.  Oh well - she's still too young, and it doesn't help that evening services coincide with bedtime.  Needless to say, she didn't get to sleep until almost 9:30, 2 hours after her normal bedtime.

That made for an exciting 5:15 am wakeup call this morning for sunrise service.  Oh, and she barely slept in the car on the way to the church, and thought it would be an awesome idea to take only a 20 minute nap between 6:15 and 12:30.  Really though, I may complain, but she was pretty darn good considering all of this!

We spent some time this afternoon with my side of the family, sans my dad - long story short, we've been worried and stressed because he was admitted to the hospital about a week and a half ago, but thankfully will be coming home tomorrow (provided everything goes smoothly!).  It felt awkward without dad here, and I missed having him here.  We did have a nice dinner though, Judith made out like a bandit with her basket goodies, we had a small egg hunt in the yard (and realized that Judith still hates grass), and just enjoyed the time together.

Naturally I can't make a post about a big holiday without some pictures.  For your viewing pleasure:

Monday, April 2, 2012

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.