Friday, February 24, 2012

Can't You Do Something By The Book? Just Once?

I'm frustrated.  Really, really frustrated.  There are many times when I'm glad that Judith's different, and her feisty & stubborn personality is behind her doing things differently than the norm.  This is not one of those times.

Remember my post from Monday about Judith's test results?  Well, you can color me completely baffled right now.  I don't deny the results - they did 2 tests on that 1 sample, and everything's normal.  We know that.  But then why did the enzymes make such a drastic difference?  And why, if things are normal, have things reverted back to the way they were pre-enzymes?  We're on our 3rd poo today, it's been a production each time to get it out, the color is not normal, it's getting bulky, and the last one looked a little greasy again (John changed the second diaper, so I'm not sure how that one really looked).  Some of the changes this week, specifically Wednesday, I thought were a combination of being off the enzymes and teething.  Today, that's been blown out of the window.

Naturally, Judith waits until office hours are over at the clinic and the weekend starts.  Lovely.  They have a nurse line for evenings and weekends, but I don't want to call them about something that's not really an emergency.  My anxious self wants to be able to discuss this today and see what needs to be done, but the rational part of myself is saying there probably isn't a lot that they can do for her, other than run more test (on what, I don't know) to try to pinpoint the problem.

I need one of those signs with a circle on it that says "Bang head here."

Thursday, February 23, 2012

Ash Wednesday & Friends

I need to start by saying that I have some really amazing friends!  When I was pregnant and decided to come out of lurkdom on the message boards I've been checking out since my engagement days, I never thought I'd meet such an amazing group of ladies who enjoy talking about babies and other random, fun things.  I'm so glad that these ladies posted, and we got to know each other - they are an awesome support network, and help keep me sane/lift my spirits when Judith, John, & I are having a rough day with everything.  I've already given them some thanks today, but I want to give them huge props here too - I don't think I can thank them enough for their support and for the surprise package they sent us today!  You ladies rock!  <3

And now for the other half of this post.  Judith was able to attend her first Ash Wednesday service this year.  Last year we were unable to go since we were under lockdown, so I was excited to take her to church for this new experience.

Things were ok.  Judith was cranky - a combination of being tired and teething (those pesky molars are working their way through, and I know it's really bothering her), and I did have to take her out of the church during the sermon.  Part of the problem was there were too many people for her to look at in the back of the church (I thought ahead on that one, and had the sense to sit as close to an exit as possible... just in case!), and the other part was she just could not find a comfortable spot in my arms.  I started out wearing her in the ring sling, much like I do for Sunday morning services, but she was getting pissed by being more restricted in that.  Then she got mad because I refused to let her eat my bulletin, and gave her an appropriate toy to gnaw on.  She wasn't really noisy up until the sermon, when she started to fuss because she couldn't get comfy.  So I got up, took her out into the hallway, and listened to her make random noises (excited screams included) because she made the discovery that the acoustics in this particular hallway are excellent and there's a small echo.  So much for trying to fall asleep!

I was able to take her back in during the Hymn of the Day, when I realized I forgot to grab my small LBW so I could participate.  ::facepalm::  The hymn was very familiar to me, but I don't have it memorized, so I could only sing bits and pieces.  Judith was still awake, but acting sleepy.  Since she was awake, I decided that she could receive the ashes - I was half bracing myself for some side-eyes from people about my decision, but thankfully didn't notice any!  Judith was absolutely fascinated by the ashes.  Hers didn't last long (I wasn't really expecting them to, and my shoulder and jawbone ended up wearing hers after about 5 minutes), but she was so curious about mine, touching my forehead trying to figure out what was there.

Judith finally fell asleep during the service... about 5 minutes before it ended.  ::cue another facepalm::  These evening services are hit or miss with her - last year, at Easter Vigil, she had a massive meltdown.  Other services she was fine, and others were like last night.  I'm keeping my fingers crossed that future services will go more smoothly!

Tuesday, February 21, 2012

Don't Forget to Vote for Us

Remember, you can vote for us daily at Top Mommy Blogs!  It's easy to do: click on the badge at the right, and your vote is counted!  Help bump us up in the ranks - help us share our story and raise awareness of cystic fibrosis!

Monday, February 20, 2012

We Got the Test Results Back

This is HUGE: Judith is still pancreatic sufficient!  Woo hoo!  We can stop the enzymes with her next meal!

They're still going to monitor her closely because she had many of the symptoms of pancreatic insufficiency, and I did notice a difference in her poops within a day or 2 of starting the enzymes.  We still have a long road to go with this, as things can change at the drop of a pin, and the odds are still stacked against her.  But for now, it's one less thing for us to worry about!


Sunday, February 19, 2012

Tax Season

I'm pretty proud of myself: this year I finished the bulk of our taxes on my own!  Granted I used Turbo Tax, and selected the option to guide me through everything, but I feel like I need a pat on the back anyway.  My mom helped with the local tax and with some parts I wasn't sure about doing (attempting to claim the shitton of medical bills from last year, for example... and we still didn't have enough to claim it even though the amount we paid out of pocket is asinine, especially given our income - thank God MA picked up as much as they did!).  Now we play the waiting game, and I'm hoping the IRS deposits our return into our account quickly.  I'm pretty excited to get this money, because we have enough to do what we wanted plus pay off the remainder of Judith's NICU bill!  I know this is kind of AW-y, but I just can't express how much relief I feel knowing that we won't have that hanging over our heads any longer!

Tuesday, February 14, 2012

Great Strides 2012: Help Us Blow Away Cystic Fibrosis!

That's right: we're a little more than 3 months away from this year's Great Strides walk, and we're still looking for people to join our team!  If you are one of our friends or family, you are more than welcome to walk with us - email me or contact me on Facebook for details for the walk.

We're also looking for people to donate to our team!  If you look to the right, you'll see that nifty "Great Strides" button - click on that, and support Journey for Judith.

I need to start looking for ideas for a team t-shirt, and I need to start scouring the dollar stores for pinwheels to put on Judith's stroller.  I can't believe how quickly the walk is creeping up on us!

Friday, February 10, 2012

Enzymes Are Working!

And what a difference it has made!  She's still going about 2 times a day, but the amount has decreased, the color is more normal, and they don't smell nearly as bad.  TMI, I know, but there's no other way to describe it.  Who would've thought I'd be this excited over poop of all things!

Still no word from the clinic on her lab results, but that's to be expected.  It hasn't even been a week, so I don't really expect to hear anything until closer to the end of the month (like around President's Day).

In the meantime, I'm working on gathering a few things to help organize/make giving the enzymes easier.  One of my mommy friends suggested getting a pill sorter, and measuring out the doses for the day into that.  Right now, it's an easy dose to measure (it's only 1 capsule, after all, but they are kind of a pain to open), but getting into this habit now will help me stay organized if/when we have to increase the dosage - at least before she learns how to swallow pills, which is years away!

I'm considering taking out stock in applesauce, particularly for those resealable squeeze pouches (which Judith loved before this).  We're not using a large amount each day, but the total amount consumed will probably add up quickly when you figure she gets a spoonful 7 times a day to take her enzymes.

This adjustment hasn't been as bad as I thought - knock on wood John & I have been doing well remembering to give her a dose before every meal, but we also haven't been anywhere outside of the house where we've had to give her the enzymes.  My timing of errands this week has allowed for us to be out of the house in between meals, but logistically I know that can't last forever.  I'm sure it won't be as bad as I expect, but for some reason that first time always seems so daunting in your mind.

Tuesday, February 7, 2012

Clinic, Screaming, and Enzymes... Oh My!

Yesterday we took Judith to the CF clinic to get her checked for the concerns I've been having with the change in her poops - she was supposed to go for her routine visit in 2 weeks, but her pulmonologist wanted it bumped up after I called them last week about her lack of weight gain.

We arrived at Hershey, and Judith enjoyed her ride in her stroller, acted perfectly normal checking in and in the waiting room, and was even interested in the nurses at first.  Then they made the mistake of attaching the pulse ox monitor to her finger, and she began to scream bloody murder (must've been that pesky cruciatus curse again...).  Nothing was making her happy/consoling her, and she howled for a good 5 minutes through the rest of her vitals and her weighing.  Doing the naked weight pissed her off even more, but at least we got an accurate weight this time: 18 lbs 7 oz - she did gain a bit, but definitely not enough in the last month alone, let alone enough to be adequate from her last visit.  Needless to say she's not on the charts again, and this symptom is lining up with everything else.

After the nurse left, Judith calmed down and played with one of those bead roller coaster things (you know, the kind where you push the beads around on the little twisted pieces of metal) that they have in the room.  Lucky us, she decided to poop while she was playing, saving us the task of collecting a stool sample at home!

She was fine the entire time the nutritionist and social worker were with us, but as soon as Dr. G walked in she started side-eyeing people.  We talked about all of her symptoms that she's been having, symptoms that prompted my concerns about possible pancreatic insufficiency and malabsorption.  Dr. G and the nutritionist both looked at her poop and said that by the looks of it and based off her symptoms, it looks likely that she is becoming insufficient, but we won't know for sure until the lab results come back.  They did say that this particular poop didn't look too bad (it wasn't one of her messier ones, and this was one time when I was kind of hoping that she would give a messier one so they could really see what's going on), but it's definitely giving them a red flag.

Dr. G examined Judith to make sure her lungs are still clear, and this prompted another scream fest.  He wanted to look in her ears, and it took about 3 of us to accomplish that task.  The throat culture was a little easier, as I managed to put her in a straight jacket hold so Dr. G could take the quick swab.  As soon as he left the room, she was fine.  He came back in, and she started fussing again.  And after leaving the final time, she calmed down.  It was hilarious!

Anyway, the team came to the consensus that it would be better to start Judith on pancreatic enzymes now, send the poop to the lab for testing, and once both tests are back (the one test takes about 2 weeks to run and send results for, and that tests the elastice in the poop - it's the more important of the 2, and will give us definitive results) we can stop the enzymes if need be, or we will be told to continue them.  This really was not a shock to me - with everything I've been seeing, I went into the appointment figuring we'd have to do this.  Now we just need to adjust to the changes in our routine, and remember to give her the enzymes every time she eats.

Friday, February 3, 2012

On This Day in 2011

It's officially been 1 year since we brought our little miracle home from the NICU!  It's amazing at how fast the last year has gone, and how far Judith has come in that time.  She was still so little, but to us she seemed big!  The first few days home were a little tense, but we finally settled into a new routine, and were glad that we didn't have to make the drive to the hospital every day.

Getting dressed to come home

Bundled up and ready to go!

Outside the NICU for the first time!

with Grandpa

with Grandma

Daddy got the first feeding at home!

Buster was not amused that he wasn't the center of attention.

Bundled up, ready for bed!  She looked so tiny in the bassinet.

Last year was chaotic, but things were relatively quiet.  This year, I'm being screamed at for kicks and having raspberries blown at me because we're tired and very silly.  What a difference a year makes!

Wednesday, February 1, 2012

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.