Monday, October 31, 2011

Halloween Eye Exam

It's Judith's first Halloween today, so how do we celebrate?  With a follow-up appointment to the opthamologist!

In a previous post, I mentioned that we were monitoring Judith for strabismus.  Much to our relief, it turns out she has pseudostrabismus: it may look like her eyes are crossing, but they really aren't.  It has a lot to do with her facial structure, and as she grows it should go away.

We also learned that we can hold off on getting her glasses for at least another 3 months.  The doctor doesn't think it's necessary to give her glasses right now, but we are closely monitoring how Judith does with the farsightedness.  It's inevitable that she'll end up with glasses in the near future, but I'm hoping to hold off as long as possible in the hopes that it'll be a bit easier to teach her not to rip them off her face when she's older.

Judith didn't go Trick or Treating this year - I thought it would be a bit silly to take her around, and there would only be 2 places we'd go to anyway (our neighbors on either side).  Plus I feel bad getting candy for her when she can't eat it.  That probably sounds completely silly.  Anyway, we did dress her up in her costume for her appointment, and managed to snap a picture of her with the dogs in their costumes:

L to R: Buster (cow, or "Boo Cow"), Judith (pumpkin), Lady (unicorn)

Happy Halloween!

Saturday, October 29, 2011


Guess who decided to pull up to stand on her own?  ;D

I couldn't believe it.  We were sitting in the living room and Judith was on the floor playing with her piano.  She was on her knees, pushing at one of the buttons when she grabbed hold, moved her legs, and stood up without assistance!  She only did it once, but I'm sure this won't be the last time she does it.

Tuesday, October 25, 2011

Adventures with Finger Foods

Judith has pretty much rejected purees at this point (she will still eat some pureed fruits, but veggies are a definite no-go), so we've been experimenting with finger foods.  Her timing isn't that great - I wouldn't be quite as frustrated if we didn't have the possible weight gain issue going on.  So after talking with a couple fellow CF mamas, I'm experimenting with different foods and different ways to boost her caloric intake.

She's handling the new solids well.  For a few weeks, we've been giving her different Gerber finger foods, and she loves most of them; but it's also time to introduce regular table foods.  She's had some canned/steamed veggies, her first taste of beef pot pie, some spaghetti, buttered noodles, mac & cheese, waffles with butter, and ::gasp:: french fries.  She doesn't eat a lot of any 1 thing, so the formula helps compensate.  As she grows and her tummy gains more space, I'm hoping this will change.  Maybe it's more of an issue of things being new and she's unsure about whether she really likes it or not.  She's such a mystery sometimes.

I do know 2 furry creatures that are thoroughly enjoying mealtime these days.  Buster and Lady certainly aren't lacking for food around here.  Heck, the other week Buster helped himself to Judith's entire breakfast (and did get punished for stealing food... stinker).  Lady's much more patient with Judith, and will wait until I place the leftovers on the floor for them to clean up (since it's mostly veggies anyway, it doesn't hurt them at all haha!), but trust me - she's just as enthusiastic about the table food as Buster is.  Let's just say it's really awesome to have 2 furry vacuums to clean up the trails left behind.  ;)

The one thing that's bothering me, and probably will bother me for a while, are the sanctimonious Judgey McJudgersons who feel the need to lecture me about my child's eating habits, especially when they know nothing about our situation.  She gets plenty of healthy foods, but I'll be damned if I'm never going to pass up an opportunity for her to have some high calorie, junky foods - if it'll help her gain weight, so be it.  She's not eating it all the time, and really there are much bigger things to worry about in life than concocting some lame theory equating eating a chicken nugget to eating a bowl of nuclear waste.

Friday, October 21, 2011

This is exciting!

Check out this article from the CFF Foundation!  There is a new drug coming out to help treat the underlying causes of CF, not just the symptoms!

The one that is currently awaiting FDA approval won't help Judith, since she doesn't carry that mutation.  But if you read the end of the article, there is another drug they're looking at that would have the potential to help her since she does carry the DF508 mutation!

This is huge news - just reading this and knowing that there may be more hope for Judith's future is amazing!

Wednesday, October 19, 2011

Normal and Normal

I love hearing that a test result comes back normal!  We've had plenty of "not normal" results from tests, so it's always nice to hear something's functioning the way it should be.

I called the CF clinic to see if they had Judith's stool specimen results, and everything was "very normal" according to the nurse.  She's still pancreatic sufficient - yay!  I'll admit that I was concerned that something was up, because she's had some funky looking poops recently.  Now I'm attributing it to the slight change of diet, and the addition of more yogurt.

Today we took the little peanut for a follow up hearing test.  She more than passed the standard newborn test before she was discharged from the NICU, but because she was on different antibiotics and because of the possible meningitis with the GBS infection we had to do a repeat to make sure the antibiotics didn't mess with her hearing.  I know she hears fine, but this test helped confirm that - everything looks good!  In some ways I wish we would've held off for another month and a half, to avoid the whole having to force her to sleep thing so they could check the nerve function leading to the brain stem.  The tech explained that once babies are a year or older, they just do the tests we did before trying to get Judith to sleep.  After an hour of Judith being very silly (and laughing at my mom for no reason - that was hilarious though!), she finally fell asleep and they were able to test 1 ear.  We tried moving her head to get to the other ear, but she woke up, therefore we couldn't finish the test.  Worst case, our pediatrician will want to reschedule the test, and we'll have to go through all of this again, but I'm going to push to skip it since everything else came back normal - why go through it again, and try to force Judith to nap in a new setting where she wants to explore everything?

Sunday, October 16, 2011

Fall Fun and a Get Together

This weekend was filled with so many fun activities - it was busy, and we're all tired, but it was definitely worth it!

Saturday we took Judith to a pumpkin patch for the first time.  She couldn't do a lot of things, and wasn't able to appreciate a lot of it, but she still had fun!  We went on a hay ride, which went through the orchard and made a stop at the pumpkin patch - you could get off and pick your own pumpkin, but we decided to stay on the ride.  It's not like Judith could really "pick her own" pumpkin this year anyway, and it would be more fun for her to be able to walk around the patch and explore.  Plus the price per pound was kind of expensive, and the pre-picked pumpkins were much cheaper.  We chose a pre-picked, smaller sized pumpkin for Judith's first Halloween!

Judith is not amused.

Hay rides are fun!

Sitting amongst a bunch of pumpkins

I'm not sure if John's going to carve it for her or not - it's on him if he wants it carved.  I honestly hate carving pumpkins.  It's such a mess, and whenever I try to carve anything, it always turns out dumb.  I'd rather paint it so it lasts longer.  We'll have to make a decision, but for now it looks quite decorative in the living room as is!

Today Judith and I drove to Hershey for a get together with some of the great ladies I talk to online.  We met at Zoo America, and spent the afternoon socializing and looking at the different animals.  Zoo America isn't a huge zoo, but it's a decent size: something like 11 acres, and they have different animals from all over North America.  There were a few animals missing (most notably the bison that died in the recent floods), a few habitats under construction, and some animals sleeping/hiding, but overall we saw a good bulk of the animals housed there.  It was such a fun afternoon - it was great to meet many of the ladies, and see a couple that I've met before!

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Tuesday, October 11, 2011

NICU Visit

Unlike the potentially stressful visits of our past, this NICU visit was a good one!  We took Judith back to St. Luke's yesterday afternoon to see the staff and to show off her progress.  There weren't a lot of nurses there, and there were definitely nurses, neos, and NPs that we missed seeing, so we'll have to go again sometime!  Those that were there, though, were impressed by Judith's progress and were glad that we brought her back to see them.  I need to talk to John and see if we can swing another visit this month.  After Halloween, a visit won't be possible because of RSV season - we definitely don't want to risk taking anything to the NICU, and on the same token I want to avoid potential germy places (like hospitals) as much as possible for Judith's sake.

Going back definitely brought back a ton of memories, some good, some bad.  But it was nice to be able to let everyone see that the hard work they did for Judith (and for all of the babies that pass through the NICU doors) really paid off, and she's able to thrive because of the care they gave her in the first 63 days of her life.

Thursday, October 6, 2011

CF Clinic

We had yet another appointment at the CF Clinic today.  It wasn't a horrible appointment, but it wasn't great either.  I feel frustrated, and I'm concerned about where things may be headed (I could also be making a mountain out of a molehill).

The good news:
For the immediate future, it looks like we can avoid a nebulizer for breathing treatments.  Judith's lungs sounded clear, and her doctor didn't mention a need for one right now.  She grew a little more than an inch, and is over 26" long!  We got a bigger percussor to use for her CPT - it's such a minor thing, but I'm hoping I can get better coverage in the zones to get more crap out of her lungs.

The bad news:
Judith gained a half a pound since her 9 month well-baby visit, and only gained 800g since July - she weighed 15 lbs 8 oz.  The slowdown could be caused by her increased mobility, but it could also be a red flag for something bigger brewing.  So now we get to do another fun poop collection to check if her pancreas is still functioning normally or not.  If it's not, that means she'll have to start taking pancreatic enzymes every single time she eats.  We're also working frantically to build up her caloric intake to boost her weight gain again.  We're going to add some snacks to her routine, add a third solid meal, and possibly boost her Neosure from 22 calories to 24 calories.

We had to take her for a chest x-ray right after her appointment.  The last one she had was in the NICU, and her pulmonologist wants to see what's going on.  Judith's coughing has increased, and she's been spitting up mucous, so even though her lungs sounded clear he wants to rule out any problems.  Poor Judith was so tired and cranky and did not want to put up with being x-rayed.  She did well though, and the radiologist said the films turned out fine.

This is so minor in the grand scheme of things, but I asked about the requirements (so to speak) to get The Vest for her daily CPT treatments.  She needs to be at least 22 lbs to start on it, and we're nowhere near that.  While The Vest would make life a little easier (and possibly simpler, but I'm probably delusional with that), it looks like manual CPT is the plan of action for a while yet.

I wish I could get some straight answers.  We need to get the latest test results back to get a handle on things, but in the meantime I'm frustrated and worrying about the outcomes.

Wednesday, October 5, 2011

Apple Founder Steve Jobs

Today we lost an innovative genius.  Steve Jobs lost his battle with cancer.  I'm saddened by this news, and I truly hope the heads of Apple continue his legacy by producing cutting edge, quality products.

RIP Steve Jobs.

Tuesday, October 4, 2011

So... We're starting WHAT?

Today is Tuesday, and that means Judith has her weekly PT session through Early Intervention.  She's doing very well, and I have to say that she's turning into a little overachiever.

So her therapist arrives like normal, and works with her briefly on crawling.  Then he declares that since she's doing so well with her crawling, it's time to start working on going up and down the stairs.

Say what?

I am so not ready for this.

In normal Judith fashion, she decides to do the hardest thing first: going down the stairs backward.  Going up (facing forward, obviously) is normally the easiest part, but go figure it's the one she had trouble with.

I was really hoping she'd be sitting on her own, unsupported, before we moved on to this skill.

Sounds like it's time to start using the baby gates regularly... for Judith instead of the dogs.

Monday, October 3, 2011

10 Months!

Judith, you are 10 months old today!

Here are your highlights from the past month:

* Things are steadily becoming more interesting, as you are exploring your environment even more!  It helps that you are much more mobile, and you're having an easier time getting to things.

* You had an occupational therapy (OT) evaluation at the beginning of the month; there was some concern about your fine motor skills when you went to the NICU developmental clinic, but after a full evaluation there isn't a significant delay after all... well, not really more than what we expect when we adjust your age.  :)

* We have been watching your vision, and noticed some eye crossing when you are focusing on objects (the occupational therapist noticed it, as did your pediatrician).  We got a referral to a pediatric opthamologist to check for strabismus.  Mommy took a picture of your eyes after the appointment, and it looks like we may be noticing pseudostrabismus - in other words, your eyes aren't really crossing, but your facial structure right now makes it look like they are crossing.  The doctor did confirm your farsightedness, and we needed to make another appointment to monitor that.  You may end up with glasses by the end of this month, or the beginning of the next, to start correcting it.  You can blame it on our family's lousy vision genes ha ha.

* You had your 9 month well-baby visit, and received 2 shots: your final Hepatitis B, which completed that series, and your first flu shot (you will need a booster for that, and will get it in a couple days from today).  Your pediatrician ordered your Synagis shots, and you're actually near the top of the list to receive them.

* We actually didn't have to take you to the CF Clinic this month for an appointment!

* You ventured to Knoebel's again, and this time we met up with your other grandparents, your uncle, and your cousins!  You enjoyed your time, and got to ride the train while Daddy held you!

* You experienced an historic weather event: record flooding.  You're obviously way too young to understand what happened, but someday we will tell you about it.  Where we live, we were very lucky and did not see high flood waters, but so many other areas, especially those where family and friends live, were not so lucky.

* We took you to another Rail-B-Q, and you enjoyed seeing 1 Amtrak train and 2 freight trains.

* You are continuing with your physical therapy through Early Intervention, and are making progress (more about that in the milestones section)!

* You have 2 teeth!  Both of them are on the bottom, and they're the front ones.  You seem to be teething again, but I can't see any that are even remotely close to cutting.

Judith's 10 Month Stats:
Adjusted Age: 7 months, 2 weeks, 3 days

Weight: 15 lbs. (as of 9/7/11)

Length: 25" (as of 9/7/11)

Hair and Eye Color: Your hair color hasn't changed - it's very much like Mommy's: a lighter brown with a reddish tint.  Your eyes are hazel - blue with flecks of brown and a little bit of gray in them.

Clothing Size: 3-6 month

Diaper Size: 3

Feedings: You drink about 20 oz of Neosure each day, and eat 2 meals of purees (3-3.5 oz at each meal) with miscellaneous finger foods (puffs, mum mums, Lil' Crunchers, or arrowroot).

Medicines/Treatment Routines and Therapies: Zantac for reflux, albuterol (inhaler + spacer) for your CF, and 2 vitamins (1 specially compounded for people with CF); CPT twice every day; physical therapy once a week for an hour

Developmental Milestones: You are a little chatterbox, and it sounds like you are getting closer to saying your first word(s)!  You are extremely curious, and like to explore everything. You creep around on the floor, and try to crawl in a way that people typically think of when they visualize a baby crawling - you're actually getting pretty fast at what you're doing!  You are doing better at picking things up; you don't quite have the skills for a pincer grasp, but you can pick things up with your fist and get it to your mouth.  You love Buster and Lady - you try to touch/pet them whenever you can, and you think they're hilarious (you laugh at them often).  You still enjoy blowing raspberries and perfecting your "excited" shriek, and now you are starting to semi-hug people and the dogs!  You are oh-so-close to pushing yourself into a sitting position, and sitting on your own.  You can sit unsupported for longer stretches, and can go from a sitting-to-crawling position; now you just need to figure out that when you're sitting on your hip you can push yourself upright with the arm you're supporting yourself with so you can sit upright!

Happy 10 months, Judith!  Only 2 more months until your big day!