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!

Wednesday, November 28, 2012

How Is It Possible...

... that on Monday I will have a 2 year old?!  The last year went quickly, but (not surprisingly) was a little less of a whirlwind than Judith's first year.  There are still a lot of raw emotions surrounding her birth that are taking longer to heal than I thought, but as of right now I feel excited for another big milestone for her.  She's almost completely caught up, and while I'm still a little nervous about not adjusting her age, I think I'm ready to face that new chapter with her.  I'm grateful that her health is as good as it is, all things considered.

It's funny, though.  She's not 2 yet, but holy hell she's been acting like a true 2 year old for a few weeks!  The tantrums, mischief, frustrations, whining, and sometimes defiance are a whole new ballgame.  Today was almost nightmarish, and was downright exhausting.  Discovering that tonight is full moon helped explain a lot of things, and now I understand why I want to pull my hair out!  The dogs weren't helping, either, and you would think that they're completely ignored day in and day out based on the way they were trying to shove each other out of the way for attention.  They listened about as well as Judith, and I swear it was like having 3 toddlers in the house.

I hope tomorrow's an easier day.  At least we'll get a clean start after a good night's sleep.

Friday, November 23, 2012

Eye Exams

First, I want to wish everyone a happy Thanksgiving... a day late.  We spent the majority of the day with my in-laws and had a good time!  One of our short conversations prompted me to think of something that I should blog about, since I get asked a couple questions a lot:

How did you know Judith's far-sighted?
This is a simpler answer.  We didn't know, but the pediatric ophthalmologist was able to detect it pretty quickly.

What prompted you to have her eyes examined?
We caught it during one of her ROP follow-ups, and continued to monitor it fairly regularly to see how it progressed.  If we didn't have the follow-ups, I would've scheduled an appointment shortly after I saw how many problems she was having during speech therapy to rule out any complications that could've developed from the ROP.

How do they examine a toddler?
This is the really interesting part!  I was pretty darn curious about the process myself, since the only thing I could really visualize was a typical exam that a child or adult would go through.

The first thing her ophtho did was look in her eyes with a light.  She attaches an animal to it to attract the baby's attention (ours have typically been a fish that looks like a bath squirt toy).  Once she checks things out with the light and with tracking, she dilates the eyes.  After dilation is complete, she takes another tool and looks inside the eye, then will hold up the various lenses to see what corrects the problem (instead of using the giant mask and telling the examiner "1" or "2" etc.).  Since she has so much experience, she's pretty slick at guessing what should help correct the problem.  It can take some experimentation, just like with adults and older children, but she does get the therapeutic prescription.

I know that's not the most scientific of explanations, but hopefully it helps you to visualize the process.

Wednesday, November 21, 2012

Helping Out Another Preemie Mama Blogger

We've been featured in another great blog by one of the preemie mamas I met in the online forums!  You can read our post here!  While you're reading, check out the other preemie posts, and peruse the hydrobabies blog to learn more about prematurity and hydrocephalus.

Saturday, November 17, 2012

World Prematurity Day

Today is World Prematurity Day, a day to honor all preemies around the world who are growing and thriving in their own way, and a day to remember all of the precious babies who lost their fight.  We wore purple in honor of Judith and all of our preemie friends!

I've met some incredible preemie parents over the last 23 1/2 months, most of them through the online forum I'm active in.  Their strength, determination, and support for one another is amazing.  Their babies are true miracles and fighters, and it is so heartwarming to see the progress they make and to watch them grow!

It's days like today when I can take a step back and really be thankful for how well Judith has done, and how much of a fighter she really is.  Granted I can do that every day, but sometimes I get lost in the daily routines and problems of that day and don't realize how far she's truly come.  I think this year has more mixed emotions than last year, because we are about to head into uncharted territory: in a little more than 2 weeks, we'll no longer adjust Judith's age, and the vast majority of her "preemie-ness" will be behind us.  She's almost completely caught up to her actual age.  It will be nice to not have to worry about so many anticipated delays, to be able to focus more on her CF and keeping her healthy, and allow this chapter of her life to come to a close.  I know it's not going to be an instantaneous process, but it still feels kind of strange since it's been such a big part of our lives over the last 2 years.  We certainly won't stop celebrating future World Prematurity Days - being a preemie is part of Judith's identity, and as she grows I want to help her understand that while she had a rough start with many complications, she overcame that and thrived.

Tuesday, November 13, 2012


Don't let the title deceive you: I'm not nervous, although the toddler behavior around here lately has been getting on my nerves.  This post is actually about the dogs, namely Buster, and his nerves.

A couple weeks ago, Lady re-aggravated an old soft tissue injury in her shoulder, and I think it's to the point where she's getting arthritic.  Buster was not very understanding of the pain she was in, and insisted on playing with her like he normally does.  Since Lady was put on confinement to rest and heal, she's been doing a lot of licking and cleaning of Buster, particularly the gross-sounding deep cleaning of his ear canals.  The pattern continued last week, and it was starting to make Buster itchy.

Last Thursday, during one of his "scratch fests,"  Buster was having a grand time itching his ears when he suddenly yelped in pain.  I didn't think too much of it, figuring he scratched too much and developed a raw spot.  I didn't think much of it, and we went to bed as normal, figuring whatever it was would be better in the morning after some rest.

Friday rolled around, and Buster kept acting stranger and stranger as the day went on.  He acted like he wanted to scratch, but couldn't.  He was sitting in odd positions, and wasn't even begging for food from Judith (a rarity, as he usually stakes out the best spot under the high chair to catch as much of the thrown food as he can).  He kept sitting and twisting himself into a crescent shape, resting his head on the back of the couch.  Any time I tried to pet him and got too close to the base of his right ear, he would let out a loud yelp and would shake from the pain.  I noticed his breath smelled really bad as well, and thought that maybe he had a toothache or was getting ready to lose another tooth (back story: one or both of the dogs, but I suspect it's only Buster, lost 2 teeth over the last year).  Buster started acting stranger and stranger while I was doing Judith's vest therapy, and barely went to the door to greet John when he came home from work.  Dinner was offered, and he refused to eat until I hand fed him some mashed potatoes and veggies.  Once we went to bed, he was so restless, kept yelping in pain, and kept us up most of the night.

With no improvement overnight, I called the vet Saturday morning.  We were able to get him an appointment quickly, and I was bracing myself for a big vet bill and a possible overnight stay for either surgery to extract a tooth or teeth or something else.  I also knew I had to separate Buster and Lady for the first time since we officially adopted them.  The short car ride to the vet was not fun: Buster sat on the seat and violently shook from nervousness and fear that I would take him somewhere and leave him.  I kept reassuring him that he would come home, that he wasn't leaving us and we weren't abandoning him, etc.  Once he realized we were going to the vet and he saw where we were, he was fine and actually enjoyed some of the individualized attention.  Anyway, I described the symptoms to the vet, and he diagnosed Buster with a pinched nerve.  I was relieved that it wasn't anything super serious, but was also kind of bummed that it's not something that can easily be fixed and would go away after antibiotics or another quick treatment.

The vet showed us how to make an improvised cervical collar.  Obviously they don't make these for dogs, so we basically take a long towel, fold it to fit Buster's shape, and tape it up to help immobilize his neck.  It definitely helps, and we've seen improvement, but needless to say Buster is less than thrilled with it.  He needs to wear it for at least a week, and then we can put it on him as needed since the issue will probably flare up every now and then.

Friday, November 9, 2012

It's So True!

I was checking out my newsfeed on Facebook this morning, and ran across this status update from "It's A Preemie Thing":

Having a preemie means your venture into parenting will not be "normal". You will learn words that many people will never even hear (and thankfully so). You will learn patience you didn't know you were capable of, you will learn true fear and faith. You will learn more about your insurance than you ever cared to know. You will be able to change a diaper standing sideways at an isolette, while avoiding wires, tubes, and I.V.s. My husband still can't change a diaper unless he's on the side of our son. ;)

You learn that the journey doesn't stop once they leave the NICU. Your childs pediatrician will become like family because you feel that you are at their office as much as you are home. You will learn that all the books you read on "what to expect" didn't teach you anything that YOU needed to expect, and you are forced to learn as you go. 

Not all preemies meet goals like "termies" do, although some exceed them! Find out all that is available to you while in the NICU, such as Early Intervention, WIC, etc. If you're social worker isn't proactive...bug them or ask to speak to another one if available.

The most valuable lesson that I learned was just how precious life is, and how fragile it can be. 17 NOV is World Prematurity Day...wear purple!

For the record, neither John or I can change Judith's diaper unless we're on her side!

Friday, November 2, 2012

November is Prematurity Awareness Month

As my post title states, November is the month set aside for prematurity awareness.  Even though CF has become the more dominant issue Judith's facing, it doesn't replace the fact that she was still born about 11 weeks early.  On November 17th, World Prematurity Day, we'll wear purple in honor and in memory of all of the babies born too soon.

This month, a lot of my friends and fellow preemie mamas are doing special entries and features on their blogs.  We have the honor of being featured on a blog from a good friend whose twins were born in February 2011, 2 days before my original due date with Judith.  Hop on over to Our Valentine's Day Surprise and check it out!

Wednesday, October 31, 2012

Happy Halloween!

It's pretty chilly and damp tonight, so we decided to pass on trick or treating this year.  That, and I'm not 100% sure that our town was still doing it tonight - I tried checking our borough website, but they didn't have anything posted.  Oh well.  We have plenty of treats hanging around from her trip to John's work last week, and we're gradually working to whittle that stockpile down.

For fun, here's a comparison of last year versus this year.  It's pretty amazing to see how much Judith has really grown in a year:



Happy Halloween!

Tuesday, October 30, 2012

Hurricane Sandy: The Day After

We're very lucky: aside from 3 brief moments where we lost power, we still had it when we woke up this morning, and have had it all day.  Considering there were almost 68,000 customers in our county alone that were without, we knew we were fortunate.  There's no damage to the house, and only 3 trees lost in our immediate neighborhood that I could see.  2 of them were in the overflow lot, and another was beside the small building to the right of us.

I feel horrible and almost sick seeing the devastation that happened along the Jersey shore and in NYC. Areas that were familiar to me from family vacations look completely different due to all of the damage.  And then there were the images of the evacuation from one of the hospitals in NYC, images of the NICU nurses and staff evacuating the preemies in their care, in some cases bagging them, and transporting them to a different hospital that had power.  I know all too well the stress that normally comes with having a baby in the NICU, and I can only imagine what the parents of the precious babies were going through, knowing their baby had to be evacuated in the middle of a hurricane.  The images also showed the love, care, and dedication NICU nurses have for their patients, and they are among the heroes that emerged during this storm.  I really wish I could reach out and hug each and every one of those nurses and the families, let them know that they're in my thoughts and prayers, and that I hope they are all safe.

Monday, October 29, 2012

Riding Out Sandy

It's been a tense weekend bracing for this storm, and a tenser day as the hurricane approached the area.  I wanted to post a quick update to say that we're ok, and so far so good.  The winds are crazy, but the rain has eased up (for now).  Supposedly we're in the worst part of the storm, and this is expected to last for a few hours yet, but I'm hoping we'll continue to fare well and will still have power come morning.

Friday, October 26, 2012

Trick or Treat!

We've been enjoying a semi-relaxing week of vacation, and since John's been off we decided to take his car to my grandparents' to get it waxed (my grandfather has a detailing business).  We took Judith's Halloween costume along so they could see her in it, and she made her trick or treat rounds, acquiring a large load of various things!  This is on top of the many treats she got yesterday when we took her to the bank for a visit (also in costume).  I'm figuring she may as well enjoy the treats she has, since the weather for Wednesday is iffy, and the town's trick or treat night may be up in the air.

In any case, Judith absolutely loves her flower costume!  I got a 24 month size, and while it's huge on her, I know she'll be able to wear it for dress up purposes for a while.


Planting herself in one of her favorite hiding places

Strike a pose!  Dog photobomb courtesy of Lady


Tuesday, October 16, 2012

Pumpkin Patch 2012 and a Culture Update

We've been pretty busy the last few days!  Saturday we took a trip to the pumpkin patch.  My MIL and niece came for a visit, and went with us.  Judith did have a good time, but she seriously protested the hayride.  She was melting down waiting in line, and was still having a fit when we got on the cart.  John ended up taking her off the ride and took her to play in the kid's area.  My niece and I continued on the ride and had a good time!

Judith really enjoyed herself sensory area!  They had feed corn in troughs and old tractor tires, and the kids could dig and play with it.  They also had some hay bales with little slides.  She got to see some chickens and goats (she kept saying "doggie" for the black and white goats), and picked out a small pumpkin.

I do have pictures from Saturday, but I'm waiting to post them tomorrow for Wordless Wednesday.  So if you're curious, you'll have to come back later!

We did get the culture results back for Judith's abscess.  Go figure she cultured positive for MRSA.  The spot is getting better, and hasn't drained for a few days.  However, we had to switch antibiotics, and getting her to take the bactrum has been a massive battle.  All of my regular tricks that we use to get the drugs into her have failed miserably.  I've tried masking the meds in pediasure, pudding, water - just about everything I could think of.  No matter what we do, she can taste the meds and promptly spits them out.  Giving it to her straight results in lots of puking and gagging, so that was quickly ruled out as an option.  We have 4 days/8 doses to go, and I have a feeling it's going to be a long 4 days.

Thursday, October 11, 2012

Abscess... Again

Judith developed another abscess, this time on her thigh.  I noticed that a little bump was starting a while ago, but didn't really do anything.  Much like the last one, it looked like a little pimple, and I thought that maybe the diaper ruffles were rubbing her skin and irritating it.  Then, over the weekend, it started getting worse, until it looked really ugly on Tuesday.  I called the pedi, and got an appointment for her.  My mom came along to help - I knew after the last abscess, I would definitely need help to hold Judith steady so the pedi could examine the spot and see if it would drain.  Luckily we got it to drain and were able to get a culture.  I'm still waiting to hear the results.  It could be staph, it could be strep, or it could be MRSA.  I hope it's just staph or strep.  If it's MRSA, the pedi said she'll have to put Judith on bactrum, and I'm leery about doing that since it's one of her go-to antibiotics for respiratory infections.  I want to ward off the possibility of resistance as long as possible, and her pedi agrees.

The amount of pus that drained out of this thing is disgusting.  Considering the size of the actual abscess under the skin, it's not surprising that so much pus was involved, but it still managed to catch me off guard.  I hate, hate, hate having to drain it.  I hate that it's so painful for Judith, and I hate hearing her scream in pain.  I also hate seeing all of the foul colored infection-laden pus pouring out of the abscess.  I normally have a relatively strong stomach for these things, but this was making me gag.

Judith does seem to be doing better each day, though.  Yesterday was a bit rough: she had a slight fever the night before, and yesterday didn't want to put a lot of pressure on her leg.  She was walking funny, partially from the pain and partially from the big band aids I was using to create a barrier for the diaper. Today she seemed to be back to her normal self, save for the crying whenever the spot was accidentally bumped.  She has 4 doses of antibiotics in her system, and it looks like it might be helping.

We're stumped by this.  Both John & I want to know how she's getting these infections.  Hopefully we'll have some answers tomorrow.

Wednesday, October 10, 2012

Wednesday, October 3, 2012

Wordless Wednesday & Happy 22 Months!

I can't believe that in 2 months, I'll have a 2 year old!

Today's (not quite) Wordless Wednesday: from the fair last weekend.

Sunday, September 30, 2012

Goodbye, September

Hello, October!  I can't believe that tomorrow's already the first day of October!  It's a reminder that we're 1 month closer to having a 2 year old.

Anyway, we had a relatively good, yet busy, final weekend of September.  Friday was basically a fail: Judith refused to go to bed at a decent time, and after a messy diaper change, she fell asleep only to wake up an hour and a half later, screaming.  We tried bringing her to bed with us, but she didn't want to sleep, so she went back into her crib.  Repeat the process every hour and a half for the next few hours, and you can see why we were seriously dragging Saturday morning (and she decided to bless us with a 6:45 AM wakeup call on top of that...).  Dosing her with tylenol helped once I realized that her teeth really must've been bugging her.  Like I mentioned in previous posts, her 2 year molars are the last 4 teeth we're waiting on, and they better not take 6 months to come in like the 1 year molars, otherwise I might go insane.

Saturday brought a wonderful treat!  My uncle, aunt, and cousin's son decided to make the trip east for a visit!  Between Judith's health, the logistics of traveling with a small baby and all of the gear we would've needed, the steadily increasing Turnpike tolls, and a general clash of schedules, it's been well over a year since we had the chance to visit.  The last time they saw us was in the beginning of April 2011 when my cousin graduated from the state police academy.  I couldn't get over how much my cousin's son grew, and everyone else couldn't get over how much Judith grew and changed!  It was hilarious watching Judith interact with her 2nd cousin, too!

That evening, we all went downtown for my hometown's annual fair.  I always forget how much of a pain it really is to have to drive around that sucker (it's a street fair, and it blocks off the main street and several of the side streets).  I have to say that the prices for things were insane at most stands, but some were relatively reasonable.  And it was neat seeing some of the new games and rides, but it was also nice to see that some things never change (hello, Fat Albert!).  Judith didn't ride anything this year - she's still a little too small for most of them, and I know she wouldn't sit still long enough to truly be safe on most of them.  She enjoyed watching the crowds and looking at all of the sites, though.  We had to leave early (don't ask...), then went back to my parents' house to have dinner with them and my grandmother.

Today was uneventful in comparison, but we did get a lot of housework completed.  We removed the air conditioner from our bedroom window, and it's already nice having the extra light filtering in!  I want to put the screen back in that window so we can get some extra air flow, but it'll probably have to wait until later in the week when we have time to seal it off from the stinkbugs.  I also transitioned out Judith's wardrobe, and cleaned out her closet.  Putting away the 12 month clothing was bad enough, but I could've cried packing up some of her small smocked outfits.  Her Easter dress from last year (size 3 months) looks absolutely tiny in comparison to her dress from this past year (size 12 months), and even though she's still really small, it's hard to believe that the 3 month size was huge on her not that long ago.  I feel a bit better putting them away knowing she has 2 adorable dresses and 1 adorable long bubble (soon to be 3 adorable long bubbles, once the other 2 ship) hanging in there, ready for her to wear.

Tuesday, September 25, 2012

A Change in Appearance

We had a new milestone yesterday: Judith's first pair of glasses arrived!  We made the trip to the ophthalmologist after speech therapy so she could get them fitted.  In retrospect, I kind of wish I had someone with me so I could get a video of her reaction when we put them on.  The optometrist gave her the case to hold, and the look of wonder as she explored the case that she could see much more clearly was priceless!  I was pretty proud of her: she didn't fuss with them a lot, and left them on her face for the ride home and for the rest of the evening.

Our little scholar

Today was a good day as well.  She did fuss with them a few times, and figured out how to get them off once during dinner, but otherwise she's been leaving them alone.  We'll see how long it lasts, especially after the novelty wears off.  However, I'm optimistic that she will wear them regularly because she'll realize she can see much better with them on.

Monday, September 17, 2012

Annual Eye Exam

Judith's annual eye exam was this morning, and what a fun visit it was (I use "fun" loosely).  The appointment overall went well: they dilated her eyes, and the opthamologist saw that the farsightedness progressed to +4 in her right eye and +4.5 in her left eye.  That's still borderline, but is at the point where they'll start to prescribe glasses to help correct things.  The opthomologist was kind of leaving it up to us about whether we wanted to do it right now or wait a few months, but I told her that Judith's still having issues with color contrast (if things are too similar in color, she doesn't always see where it is) and she said we should go ahead and do this now.  Judith was fit for some cute frames, and will be getting her new glasses in about a week.  I have to say she does look cute in them!  I promise to post a picture or 2 once she has them.

Judith treated her opthamologist just like any other doctor: she was a hot mess from the moment the doc walked into the exam room, and didn't stop until we were at the checkout desk.  I swear you would think we were ripping out her toenails based off of her screams!  I'm glad my mom was there to help.  I really can't wait for the day that she doesn't scream bloody murder at every appointment.  I know the doctors are used to this kind of behavior, but now it's getting embarrassing.  Minnie only worked as a distraction for so long, and I'm starting to be at a loss about what to do with her.  Frequent doctor visits aren't going to ease up, and I'm hoping she'll start adapting to things soon.

Sunday, September 9, 2012

21 Month Pictures

I made the second (and final) attempt at 21 month pics for Judith this afternoon.  They turned out decent - I'm not super satisfied with them, but they're not bad.


Sitting still just doesn't happen these days.

Finally, a smile!  This prayer afghan was made by members of one of my father-in-law's former parishes.  One of the ladies that helped make it is also a CF mama.

Are we done yet?

Today was Rally Day at church, and while Judith is still too young to attend Sunday School there, they welcomed her/encouraged her to try to join in some of the festivities.  The biggest hit of the morning?  The balloon decorations - she would see them and declare "A boon!"

Monday, September 3, 2012

21 Months

We attempted a photo shoot this morning, and that was a pretty big fail.  So no pictures with the post today, but I promise I will post them sometime next week after we try again!

Judith, you are 21 months old today!  Only 3 months to go until your 2nd birthday.

Some big things that have happened in the last 3 months:

* You (along with the rest of us) survived another insanely hot summer.  We had to spend a lot of time indoors because of the heat and humidity, but we made the best of it.

* You had another CF clinic appointment, and everything looked good!

* You finally got your airway clearance vest!  You're not the biggest fan of it, but if we distract you with something (toys, Disney Jr. shows, books) you tolerate the treatment.

* You've continued your speech therapy sessions, and have had a language explosion - we're amazed at how many words you've added to your vocabulary!

* You had another cold, and got your first ear infection.

* We had a fun play date at a great park!  You had a blast walking around and exploring things, but we discovered you're not a fan of the swings this year.

* You went to the Hands-on-House for the first time and loved it!  We're definitely going back again soon.

* You have tons of energy, and some days I wonder where you get it all from.  You're constantly on the go, and have turned into a little spider monkey - climbing up and down things is one of your newer sources of entertainment.

Judith's 21 Month Stats:
Adjusted Age: 1 year, 6 months, 2 weeks, and 4 days

Weight: about 21 1/2 lbs (as of mid-August)

Length: 30 1/4" (as of 7/24/12)

Hair & Eye Color: Neither has really changed.  You're slowly growing your hair, and there's a little more than what you had 3 months ago.

Teeth: You almost have all of your baby teeth!  All of your front teeth, canines, and 1 year molars are completely in.  We're just waiting on your 2 year molars, but you're definitely teething so I think they're starting to slowly work their way to the surface.

Clothing: Still 9-12 month sizes!  I'm surprised at how well your 12m pants fit length-wise, and I think we'll be able to get through a portion of the fall with them.  You can wear some 18m sizes, but it's generally pretty big/long yet - you'll grow into it this fall/winter.

Diaper Size: Still in size 4.  I'm anticipating that you may need to move to 5's for overnight soon.

Diet & Nutrition: You're definitely becoming a picky eater, and getting you to eat enough calories is becoming a real challenge.  You do drink about 32 oz of Pediasure every day.  We got the ok from your nutritionist to try some whole milk - you're not a big fan of plain milk, but seemed to enjoy some chocolate milk.  You're also having an easier time drinking water, and are starting to learn how to drink from a regular cup.  We're working on using utensils, but you have a long way to go.  Some of your favorite foods are cheese curls, pasta with different sauces/toppings (butter, spaghetti sauce, cheese, etc), cereal, pancakes/waffles, potato chips, and assorted veggies.

Developmental Milestones: You've had a language explosion over the last couple of months!  I stopped counting how many words you have, but some of the newest are mommy, daddy, duck, really, wow, whoa, uh-oh, oopsie, cracker, Elmo, Cookie (as in Monster), full, foot, and shoe.

Happy 21 months, Judith!

Thursday, August 30, 2012

The SmartVest by Electromed, Inc

As you already know, Judith's been using her SmartVest for about a month.  The "honeymoon" is definitely over with it, and she's been having mini tantrums when I want to put her vest on.  Once we start the treatments, I distract her with Disney Jr. and her shape sorters (or another toy), and she's generally ok.

During the last month, I've been bracing myself for the insurance denial letter.  Electromed actually has something in place where you can sign a waiver for them to handle all of your insurance issues for the vest, and we took full advantage (who wouldn't want to do that in this case?).  I wasn't sure if we'd actually see the denial letter or not, and I didn't know how the payment negotiations were going.  Well, today we got our answer, in the form of our regular statement, which means that our primary insurance paid their portion (it's always a crap shoot to see what Medicaid pays since I rarely get statements for stuff, and so far they've covered everything).

So let's have some fun and play a game!  These airway clearance systems aren't cheap, but most people may be shocked at the actual cost.  Small side note: I don't think ours is quite as expensive as The Vest by Hill Rom - I read blogs and know some parents who use this vest on their child(ren), and it looks like it costs a bit more.  Anyway, to give you an idea, here's a list of different things I could buy for the cost of Judith's SmartVest:

311 Economy Plus packs of Pampers Cruisers (size 4 - Judith's current size)

1,167 6-packs of Pediasure

82 Island Treasure steak & seafood combo packs from Omaha Steaks

21 shares of Apple stock OR 733 shares of Facebook stock (prices at close on 8/30/12)

350 copies of Paper Mario: Sticker Star for the Nintendo 3DS

4 tickets in the lower level for the Pittsburgh Steelers

111 season passes to Hersheypark for 2013

1 used 2008 Toyota Corolla

Ready to hear the grand total?


Yep, that's a comma in there.

I knew this sucker was going to be expensive, and to be honest after reading what other people's vests have cost, I was a little surprised that the figure was that low.  Still, that's a pretty hefty chunk of change.  Our primary insurance picked up the bulk of it, and now the rest is being submitted to medicaid, so we'll see how much they end up paying.

It really does blow my mind how much this disease costs to maintain.  But I'll gladly look at all of the statements if it means Judith will be as healthy as possible, and we'll pay whatever we have to to help her.

Sunday, August 26, 2012

All Clear

Judith had her follow-up appointment with Dr. W. on Friday to make sure her ear infection and cold were gone.  Good news: her ears were clear!  Bad news: she was a hot freakin' mess.  She performed her usual antics that she pulls at a doctor's office, but this time started as soon as we hit the exam room and one of her favorite nurses took her temperature.  Silly child.  She still has a stuffy nose, and we're not sure if it's left over from the cold or if it could indicate allergies, so we're watching it.  I already know Dr. G. is going to want to do allergy testing when we do her annual blood work at clinic, so that should help give us some answers, but it'll be a long wait.  Oh, and Judith also got her flu shot.  I couldn't believe that the office already had them in and available!  Dr. W. asked if we wanted to do it, and I jumped on the opportunity - I do feel better knowing she has it and will have the protection as we head into the fall, but this also means I won't have to make a separate appointment and make a separate trip for her to get it.  It's nice when things work out so conveniently!  John and I will have to get ours at some point, but we have a bit of time before we have to worry about that.

In other news, Judith's been adding some new words.  She has a long list, but most recently she started saying "Daddy" instead of "Dada."  I've been trying to get her to say "Mama," but no dice.  Today, though, she finally, FINALLY started saying "Mommy!"  I was thinking, "It's about time, kid."  But deep down, I'm thrilled that she's saying this stuff, and it only took 20-almost-21 months to hear!

Tuesday, August 21, 2012

Fun at the Park

Judith & I met up with my friend, Amy, and her 3 kids this morning at a local park.  The location was gorgeous, and everyone had a blast!  It was great to have some in-person adult interactions, too!

The park has a covered bridge and some historic buildings (the buildings were closed, though, so we didn't get to see what they look like inside).  There's also a new peace garden with a bunch of different plants that the kids could explore.  I didn't get a picture of it (and I regret it now), but we saw a pretty caterpillar that will turn into a monarch butterfly, lots of bumble bees that were busy pollinating, and even some mosquito larvae in the stagnant water of the bird bath.  Naturally, Judith saw water and wanted to play in it, and I had a brief moment of panic quickly pushing her away from the gross West Nile virus breeding ground.  I have to admit that it was kind of neat to see the larvae in the water, as I never saw that before.  Anyway, the garden also had a small corner for vegetables, and they had some nice tomato plants and corn stalks.

We couldn't have asked for a better August day, either.  The weather was gorgeous, and the temperatures were nice - warm, but not overly hot.  I am so grateful that it's finally cooling down, and we can start doing stuff like this with Judith again!

She's unimpressed.

Swings were a hit last year.  This year, not so much.

Judith loves dogs, and was infatuated with Amy's Yorkie!


Hugs for the pup!

Friday, August 17, 2012

Fall Preparations

It's that time of year: the start of a new school year is around the corner, back to school ads and commercials have been in the papers or airing for a few weeks, and the fall lines of clothes have hit the racks.  I think I'm ready for the cooler weather, especially after the insanely hot and humid weather we've had this summer.

I've been shopping for Judith, and am really excited for her to wear some new (or new to her) clothes!  It's extra challenging this year - she's not growing as quickly, and it's hard to predict what size she's going to be in for the upcoming seasons.  I'm anticipating she'll be in 12-18 month sizes for at least the fall, if not most of the winter.  I scored a bunch of pants last week at a freecycle event that my in-laws' church had, and all we need to do is get some more onesies/tops for her.  I ordered her dresses for church last night on eBay (smocked, of course!), and I'll be ordering the 2 smocked bubbles I want to get for her in a few weeks.  We'll need to get her a couple pairs of shoes and some tights, but then we'll be set.

I'm happy to report that Judith's cold didn't get as bad as it could have, and it seems to have cleared up completely.  I'm not sure if her ears are completely clear yet, but she's still taking her antibiotics so we should be good.  We moved her back to her room a couple nights ago since she doesn't really need to be elevated anymore, and I decreased her vest treatments back to the normal 2 per day since her cough has disappeared.

Speaking of vest treatments, we have a treatment goal time.  I talked to the nurse the other day, and asked what we should be shooting for.  They want her to work up to 30 minutes twice a day - right now it seems like a lofty goal considering the novelty has more than worn off and Judith has become Little Miss Fussy Pants with her treatments, but we're going to try it anyway.  Right now we're sitting at 12 minutes, and I'm going to keep bumping up the time gradually.  Thank goodness for Mickey Mouse Clubhouse, Chuggington, and Jake and the Neverland Pirates - they're going to save my sanity and hopefully make those 30 minute sessions possible!

Thursday, August 9, 2012

We Had A Good Run...

... but our track record is broken.  Thankfully I caught it early enough before it escalated into something more serious.  Judith has a summer cold with an ear infection - not surprising since we went to Hands-on-House last Friday.  She's been congested, and yesterday she was acting a little off, mostly with her sleep (she was sleeping a ton), and today she kept sneezing, causing her nose to run - this kid's nose rarely runs, so it's been a new experience for us.  Go figure that, just like last December when she had the sinus infection, she gets sick when Dr. G. is out of the office, the nurse coordinator is out until next week, and Dr. W. doesn't have any appointment blocks available.  ::facepalm::

We did get an appointment with a different doctor, and Judith handled the change pretty well.  Probably because it was someone new, and she couldn't predict what he would do.  In any case, the good news is her lungs are clear, so we don't need to increase her Albuterol or vest treatments right now.  If she starts coughing more, then I'll add an extra session or 2 to make sure things are getting cleaned out.  The bad news is she is on a 10 day course of Augmentin for the ear infection and to hopefully keep things from setting up shop in her lungs.  The pedi told us that there's a possibility that things could get a little worse before they get better, but we're hoping that's not the case and the antibiotics will kick in quickly.

We were working on adapting to her sleeping in her big crib at night, and she was doing really well until last night.  I thought it would be better to have her sleep in our room for a few days until she's feeling better, then we can go back to the other arrangement.  So for now, Judith's back in the travel lite with 1 end elevated to help relieve some of the pressure in her ears and help with the congestion.

I have to say, though, that the little bugger's already mastered the art of sharing, and was generous to share her germs with me.

Friday, August 3, 2012

First Adventure to the Hands-on-House

Originally, we were planning to take a big family day trip to Knoebel's.  John's family was going to meet up with us and my parents, and we were going to spend the day taking Judith on some rides for the first time (last year we only took her on the train since she was so little).  Thanks to the ridiculously hot and humid summer, our plans did not unfold - since it was so humid today, and the air quality levels were at an orange, we opted for me to stay behind with Judith while John met his parents, brother, and our niece and nephews to have fun on the rides.

Instead of hanging around the house, though, I told my parents that I'd like to bring Judith and the dogs to their place, and thought that maybe we could take her to the Hands-on-House for the first time.  I've been holding off on taking her, since I knew she wasn't really ready to handle it and she was still putting everything in her mouth, but I thought that today would be a perfect opportunity to give it a shot since it was an activity we could do inside in the a/c (and she's not putting as much in her mouth right now, so that was an added bonus!).

Hands-on-House is a local children's museum that has many different activities for kids to enjoy.  It originally started in an old house, and I went there many times when I was a kid. Since then, the museum moved across the street and is now adjacent to Landis Valley, and is on 1 level.  The activities are different (the grocery store is still the same, just updated to mirror what a modern grocery store looks like instead of the '80s version ha ha), but no less entertaining and educational.

I am so glad that my mom and I took Judith today!  She had an absolute blast, even though she's still a little young to do everything, but watching her explore the different areas was awesome!

Checking out the color changing board



Moving the eggs into the refrigeration unit, then waiting for them to pop back out

It's a cow butt!

Driving the New Holland tractor

Picking corn

Petting the pig

Selecting some dog food while holding a mushroom top in the grocery store

Sorting mail - is she going to follow in her great Grandpa's footsteps and be a letter carrier?

Yo ho ho!

Quality control

Germ blaster!

Fishing with Grandma