Monday, December 31, 2012

Heading Into the New Year

Fingers crossed that the background I set sticks!

I have a few things and reminders for all of you, loyal readers, as we head into 2013:

1. Don't forget to vote for us daily at Top Mommy Blogs!  It's as easy as clicking on the badge to the right.

2. Team Journey for Judith is registered for the 2013 Great Strides Walk!  If you are interested in joining our team, you can do so at the Great Strides page.  If you can't walk with us, you can donate by clicking on the Great Strides badge to the right.  Stay tuned in the coming months for a few fundraisers that we want to try to do to raise more money for the Cystic Fibrosis Foundation as we walk to find a cure for Judith and all of the adults and children fighting CF!

3. If you scroll down, you'll notice that I have a new-ish box for Networked Blogs.  It's linked to Facebook, and when I update you can receive a notification of the update.  Click on the button at the bottom of the box to follow us there!

I hope everyone has a good and safe New Year!

Another Blog Change

Pardon our mess.  I'm trying to change backgrounds again for something different, and blogger is being incredibly dumb and won't save it for some unknown reason.  So forgive the crappy template background, despite the logo in the upper left corner.  I'm hoping I can get this issue resolved soon.

Wednesday, December 26, 2012

Christmas Time Is Here

The last 2 days have been exhausting, and battling to try and get the bactrum into Judith didn't help our stress levels, but we still had a good time and made some good memories as a family.

Christmas eve was more insane this year than it was last year.  Judith and I hung out at her godparents' house during the first service, and then we joined John at the church for the 2nd service.  We took some pictures before the Youth Chime Choir had to rehearse, and I was pleased that I got a good Daddy/Daughter shot:

I was surprised that Judith didn't fall asleep during the service, even though she was clearly tired.  She stayed awake through the whole thing, and overall was well behaved.  Once we took her back to her godparents' place and got her into her jammies, she fell asleep and stayed asleep until we were done with the last service and went to pick her up.

Earlier in the day, I was worrying about the weather because they were calling for some mixed precip to fall during the evening and into the night.  While we did get a bit of sleet, it was mostly snow and regular rain, and travel wasn't too hazardous for us.  The end result was a very pleasant surprise: we ended up with about an inch and a half of snow, and woke up to a winter wonderland on Christmas morning!

Judith was kind to us and slept until 7:30.  I would've loved for her to have slept longer since John & I didn't get to sleep until 2, but at least we got 5 hours in, and that's better than nothing.  I made cinnamon rolls and hot chocolate for breakfast, which is something I'd like to turn into a tradition.  Judith was playing and running around the living room with pieces of her Nativity set; she grabbed baby Jesus, and correctly told us who it was:

Buster and Lady were relaxing along with us (Lady was actually taking a break from chasing the pieces of Judith's Nativity set), and were eagerly waiting for breakfast to be made so they could catch a few handouts:

After breakfast, we opened presents.  Judith was able to open most things on her own this year, but she still didn't quite get the whole concept.  I think in another year she'll really get it.  In any case, she was a very delicate unwrapper this year, and would pull small shreds of paper off her gifts then hand them to us.  Silly girl.

Hugs for her new stuffed Minnie and Mickey!

After presents we squeezed in her morning Vest treatment, then headed to my parents' and grandparents' places to do the gift exchanges with them.  Judith got a lot of neat things, including a stuffed Daisy:

Now we have half of the Mickey Mouse Clubhouse characters in our house.

Green tinsel garland makes a fabulous boa

My mom made Christmas dinner this year.  I feel bad because Judith barely touched the food, even though it was things we know she likes.  I'm hoping that by next Christmas, she'll have grown out of this picky phase.  Anyway, after dinner we had 2 more rounds of presents.  By this time, Judith was starting to lose interest in the whole thing, and didn't really want to nap, either.  We ended up helping her open most of her stuff because she was basically done and more interested in pulling the candy canes off my parents' tree:

I felt bad that things were a little rushed at the end, but we knew we had to get her home and put her to bed.  It was for the better, because both John & I were exhausted, and my parents were pretty tired after having to do so much at their church the night before.

Overall, it was a good holiday, but we can't wait for next year when she'll hopefully be more into the whole season.

Thursday, December 20, 2012

Culture and Lab Results Are In

We have mixed news this time, and probably won't have answers on a couple things for a bit.  First, the good: Judith's blood work mostly looks good, and her chest x-ray is normal (something Dr. G. is very pleased with).  Somehow the lab forgot to check her vitamin D levels, so we'll have to get that checked the next time she has blood work done.  It's not a crucial thing and can wait.

The bad news: her liver levels are elevated for the 2nd time in a row, so Dr. G. wants her to have an abdominal ultrasound to check things out and to get a baseline.  We'll run that test sometime before her next appointment, so we'll have to wait to find out more information and to get an idea of what's going on in there.

Throat cultures weren't as good this time.  She had 2 clean cultures since her first pseudomonas infection last April.  I was really hoping for a 3rd clean culture, but luck was not on our side.  Her lungs are culturing MRSA, so we're going to do a round of bactrum and see if it can eradicate it.  The nurse coordinator explained that, just like with the pseudos, they want to try to catch and treat a MRSA infection quickly so it doesn't become a more serious issue and so they can reduce the amount of potential damage it can do to the lungs.  I did give her a head's up about Judith's 2 MRSA infections in the abscesses over the summer, just in case they wanted to move to a stronger antibiotic.  Since the cultures for the lungs are slightly different than the skin cultures, she said they can still try the bactrum and take it from there.  One good point we discovered from the culture is she is still pseudo-free, so at least we don't have to worry about that on top of the MRSA.

I hate that when it seems like she's doing well, something else crops up to slap us back into reality.  It's frustrating.

Tuesday, December 11, 2012

CF Clinic

Hurricane Sandy delayed our clinic visit, but we finally got to go for our fall visit today.

Exploring things in the waiting room

 Her well baby visit last Friday went really well, and I was cautiously optimistic that we might be starting to turn over a new leaf and wouldn't melt down every time the doctor came into the room.  When the nurses called her into the triage area to check her vitals, things got off to a good start:

Waiting with Daddy

Watching the nurses get the equipment ready

Fascinated by the light on the pulse ox monitor

Checking her BP

Bubble distraction!

Judith saw Dr. G. walking in the hallway twice while they were taking her vitals, and she didn't cry!  That hasn't happened in a long time, and I felt more confident that the visit would go well.

Weighing her was not easy since she was protesting the scale.  They used the infant scale so they could get the most accurate weight since she was still in the 3% for weight at her last visit.  Today she was 22 lbs 12 oz (naked), so not too far off from the pediatrician's scale.  They measured her at 32.5", but we're not sure how accurate that is since we didn't know if John had her head in the right spot.  She calmed down once she was allowed to get off the scale.

Our visit with the team today was a little faster than normal, but I also didn't have a lot of concerns or questions.  Judith cooperated so well during Dr. G's exam, and really impressed the team, both with her behavior and her new language skills.  Her lungs sounded ok (normally Dr. G. says they're good if they're totally clear), and I may be reading too much into things, but they want to wait and see what her chest x-ray results are.  I'm hoping for clear lungs, and also for a clean throat culture.

In addition to the x-rays, we had to do her annual blood draws.  I knew that was going to be rough, and there isn't anything we can really do about it.  Her nurse put some of the numbing cream on her arms before we went to the lab, and while that helped a bit she flipped out when they had to dig for the vein with the needle.  I hate it when they do that to me, so I don't blame her for crying harder.  She unfortunately had to have 2 needle sticks, one in each arm, because the first vein blew halfway through the draw.  I feel bad for her, and I'm glad we don't have to do this often.  We should have results for some of the tests early next week, and the rest should come back in the next week or 2.

Friday, December 7, 2012

2 Year Stats

Judith's 2 year well baby was this afternoon, and her pediatrician's pleased with her progress!  The real test will be to see what her CF team thinks when we go for our next appointment, but for now, I'll take what we can get!

Since my mom got a new job and her vacation time is nowhere near what she previously had, John went along to the appointment with us.  I was counting on it being another nightmare of an appointment, but Judith gave us a huge surprise!  Things didn't start out too well, and she didn't want to walk out of the waiting room, so John had to carry her, all while she was crying and saying "Bye bye!" to anyone that would listen.  She had a small fit while we were taking off her shoes and pants, but calmed down once we set her on the scale.  For the first time, she got to stand on the big kid scale!  I think that helped calm some of her nerves since it's a novelty right now.  She started crying and saying "All done!" when they tried to measure her height with the big kid measuring device, but we got a good read before she pushed the nurse away.

Her official 2 year stats:
Weight: 23 lbs (8%)
Length: 32" (10%)

I was glad that we got a digital read on her weight!  Her pedi is pleased with her weight gain since her 18 month visit, and she surprised me with how much she gained, but this is a sticky area that I always worry about what her CF team will say.  Judith's still petite, but is following her own curve so that's good.

Anyway, Judith did really well with the blood pressure cuff when the nurse took her BP, and Judith was extra good for Dr. W. during her exam!  She was happily showing off her language skills, saying things like "Circle!  I see circles!" and "It's a boo boo."  Dr. W. echoed what Judith's speech therapist has been saying: based off how many words she's picking up and starting to chunk together into small sentences and phrases, she may not qualify for services after her 9 month quarterly.  At the very least, we'll probably be scaling back.

Judith did have a very slight temp this afternoon, 99.6ยบ.  We know she's teething, so it very well could be from that, but at the same time I'm keeping tabs on it in case it gets worse and she's getting sick.  Her lungs sounded pretty clear, so that's always a positive thing to hear!  Judith also got 2 shots today: her 2nd HepA and the pneumovax (the extra 23 variant pneumonia vaccine, since she's in the high risk group).  I was hoping we could do the pneumovax to get some extra protection into her, but wasn't counting on having to do another shot.  I thought for sure that we were caught up, but we missed the 2nd HepA dose somewhere along the line.  It's no big deal now, because I know we're caught up!

I hope I don't jinx things, but I'm really keeping my fingers crossed that her clinic appointment will go just as well and she won't be terrified.

Monday, December 3, 2012

Happy Birthday, Judith!!!

It's hard to believe that another year has flown by, and Judith is already 2 years old.  If you're a new reader/follower of my blog, you can find the link to Judith's birth story on the right with the rest of our pages.

This is going to be a slight adjustment for us.  Symbolically, I'll be shedding the preemie tickers here on the blog and in the online forums I participate in.  Realistically, we're now in that unfamiliar, uncharted territory of putting so much of her "preemie-ness" behind us.  I'm sure I've mentioned it before: it's defined so much of our lives for the last 2 years, and while it's time to move past so many of those things because she's overcome them, it'll still be a big part of who Judith is and her whole story.

I'm feeling more excited this year about her birthday than last year.  The cloud of uncertainty from CF still hangs over us, and I realize that her breaths may be numbered.  BUT... over the last year with the FDA approval of Kalydeco and the progression of the studies for VX-809, I feel like there is more hope for her to eventually have a long and normal life.  Coupled with the fact that she has done relatively well over the past year with the CF (save for the pseudomonas infection), has made incredible progress with her milestones, and is practically caught up, I feel like we have even more to celebrate and be thankful for!

Now, without further ado, Judith's birthday letter!:

Happy 2nd birthday, Judith!  This year went by really, really fast, and you've made so much progress!  Mommy, Daddy, Buster, and Lady are very proud of you!

Since I wrote your 21 month post, a lot of different things happened:

* You had a massive language explosion, and are adding at least 20 words a week to your vocabulary.  Most of them aren't consistent and unprompted, but you're getting there.

* Believe it or not, we had another hurricane hit our area this fall.  Hurricane Sandy was worse wind-wise than the storms last year, but we didn't experience as much flooding.  You handled everything well, and didn't get scared by the howling winds.

* As a result of Hurricane Sandy, we had to postpone your fall CF Clinic appointment.  Dr. G. was ok with waiting a month and a half when an appointment was available, so we have a visit coming in a couple weeks.  You'll be getting your annual labs done.  Sorry, kiddo.

* You had 2 MRSA infections that sucked massively.  I know it was painful for you to have the abscesses drained, and I feel bad that you had to go through that.  Fingers crossed, it looks like we got rid of it after the 2nd round, and you haven't shown symptoms since.

* Your second Halloween came and went.  You dressed up as a flower this year, and loved your costume!  The only trick or treating we did was with your grandparents and great-grandparents and at Daddy's work because we weren't sure if our town was still holding trick or treat night due to the hurricane.

* You experienced your first major election!  You charmed the pants off the poll workers, and were fascinated with all of the buttons (and watching Mommy push them).

* You got your first pair of glasses!  Your eye doctor thought it would be best to go ahead and start correcting your vision now, and the difference has been remarkable.  Once you realized you could see better, your fine motor skills with certain things improved greatly, and you really started taking off!

* You got to meet one of your cousins and your aunt and uncle for the first time at Thanksgiving!

* You are absolutely in love with Buster and Lady.  You love to play with Lady, and ask them for kisses (which they're more than happy to give, especially if you have some leftover food on your face). You've been learning how to be gentle, and have been doing well.

Judith's 2 Year Stats
Adjusted Age (one last time): 1 year, 9 months, 2 weeks, and 3 days

Weight and Length: I don't have current updates.  You have your well baby and clinic appointments coming up, so we'll get your stats then.

Hair & Eye Color: No major changes with your hair.  It's growing, but very slowly.  Your eyes are more brown than hazel.

Teeth: Still waiting on those 2 year molars to pop through!

Clothing: 12-18 month

Diapers: No changes, still in size 4's

Diet & Nutrition: If we had no idea you were a toddler based off your age, we'd be able to figure it out very quickly based on your eating habits.  You are super picky, and really won't eat much of anything these days.  Once we discuss this with your nutritionist and your doctor at clinic, we should have a better idea if it's just a toddler phase or if something else is up.  I'm glad you enjoy your Pediasure, and are drinking at least 32 oz of that every day.  Right now some calories are better than none, but you're really making us pull our hair out with frustration when you refuse to eat!

Developmental Milestones:  I thought you had a language explosion when I wrote your last month birthday post.  Holy smokes, was I in for a surprise, and realized that what you were doing was nothing compared to what you would do over the next 3 months!  Like I said earlier, you're adding at least 20 new words a week, and some weeks you've added 50 or more.  You never cease to amaze us and make us laugh with some of the crazy, completely random words that you pull out of nowhere (and repeat often; example: Ahoy!).  This is really the last area that you needed to catch up in, and we think you're there, if not past where you should be.

Happy birthday, sweet girl!  We're so proud of how far you've come, and we love you very much!