Wednesday, July 25, 2012

It's Ordered!

Much to my surprise, I received a phone call from Electromed, the makers of the Smart Vest, this morning while I was dropping off Judith's cup o' poo at the lab.  Her vest was 1 step away from being ordered and shipped - all I had to do was review insurance info, health info, etc., with the representative!  Her vest is expected to be here early next week, and a rep will come out and teach us how to use it.  Woo hoo!

Tuesday, July 24, 2012

CF Clinic

Judith had her quarterly clinic visit today.  Much like most of our visits, there are positives and negatives - as of right now, we're not looking at anything major (pending her throat culture results).

I am so grateful that my mom is able to go with me to these visits when John is unable to!  It helps a lot having an extra set of hands, especially now that Judith is into everything.  We had some fun in the waiting room after her vitals were checked and while we were waiting for an exam room to become available:
Saying "baby" to herself in the mirror.

"Mommy, do you see the baby in this mirror?"

Silly faces

Practicing opening wide for her throat culture

Once we got into the exam room, she started to melt down (something I was hoping we could avoid since she did so well at her 18 month well baby visit) when we put her on the scale to weigh her:

Judith currently weighs 21 lbs.  That means she only gained 4 oz in almost 2 months.  Realistically she could've gained a few more ounces since the pediatrician doesn't use the digital scale for her anymore, but even so the difference wouldn't be that dramatic.

While we were waiting for the nutritionist and Dr. G., Judith entertained herself with the bead toy in the exam room:
She was very serious about her visit today

"Grandma, do you see what I'm doing?!"

The nutritionist came in a few minutes before Dr. G., and I got a chance to talk to her about how things were going since I made the phone call to her a few weeks ago.  I described what her typical meals look like, and we talked about how Judith isn't really interested in eating as much as she is drinking her Pediasure (all of us were concerned about this since her weight gain was so minimal as a result).  Once Dr. G. arrived, we went over all of this info again, and we think that part of the problem is because she's still so backed up with her poop.  We're going to start giving her the miralax every day to see if that can clean out her system.  I also mentioned how there's a sheen to her poops, and the team is concerned about that on top of everything else - it could be a sign that maybe she is becoming pancreatic insufficient, so we're going to test her poop again.  With her track record, it very well may be a normal test, but Dr. G. wants to stay on top of this so we can treat it early if something is developing (which I am pleased about - I'd much rather go this route as well!).

We talked about the increase in coughing that Judith is doing.  Right now we're keeping an eye on it and waiting to see what her cultures come back with.  Dr. G. said that the cough could mean the pseudomonas are growing again, but it could also be triggered by something else, something like an allergy.  We should have her culture results by next week (possibly Friday if things grow quickly), and we'll do some allergy testing when we do her annual blood work.

Probably one of the biggest pieces of news is Judith finally weighs enough that we can order her Vest!  Dr. G. is giving the script to the nurse coordinator so she can get the ball rolling and the order placed!  I am so excited that this is finally able to happen!  It has been a massive struggle trying to do manual CPT on Judith for a long time (lately it's been a nightmare - she tries to get away from me, kick/hit me, etc), and frankly my wrists are starting to bug me because of the repetitive motion involved.  I know that introducing her to her Vest is going to be a new battle, but I'm staying optimistic, hoping that she will adapt to it quickly like she did to the nebulizer.

Sunday, July 22, 2012

Support for Preemie Parents, Families, and Friends

I know that our blog has steadily become more of a focus on Judith's challenges with CF, but her prematurity is still a big factor in her well-being, and will always be a part of who she is.  In the early days after her birth, I found comfort in blogging about her progress, but I also became a part of a wonderful community of ladies on a parenting website - many of those ladies were on the "age" boards, a few were on the special needs board and are fellow CF mamas, and the rest are wonderful mamas who also have preemies.  Their support, encouragement, and understanding helped me to get through some of the rough days, and in turn I have been able to help other parents of preemies get through some of their rough days.

A while ago, a couple of these fine ladies created a blog that so many of us in the community have contributed to.  It's designed to help, encourage, and support preemie parents, to help friends and family understand what it's like to have a preemie, to help friends and family get ideas of what they can do to help the new parents, and offers tips on various topics like exclusively pumping for a preemie, exclusively breastfeeding a preemie, germ control, early intervention, etc.  In addition, many people have submitted their birth stories, and you can read about the wide range of experiences everyone had.

When you get a chance, check it out!  Bookmark it, refer a new preemie family to it.  You can find the blog at  You can find additional support and information in the coordinating Facebook page:

Wednesday, July 18, 2012

Happy Gotcha Day, Buster & Lady!

It's been 3 years since we adopted Buster and Lady, and I can't believe how time has flown! I am so pleased at how well both dogs do with Judith, especially now that she's mobile.  Judith adores both of them, and loves to pat them and say their nicknames (Dee and Boo), although she still confuses them sometimes.

Buster is as snuggly as ever, and is still perfectly content laying tight against you or being scratched (poor guy's allergies have been bad this year, and he's very itchy, so he does get demanding at times).  Lady is still a ball-crazy girl, and lives to play!  She has been learning that not all of the toys in the house are hers, and she can't grab whatever random baby toy is lying around.  However, she does like to play with Judith, and there are some common objects that we allow Judith to use to play with Lady (supervised, of course) - this video is of Lady playing gently with Judith using the lid off a big canister:  

Buster & Lady still enjoy their visits from their grandmas and grandpas, going to Petsmart, and going for rides in the car.  Even though they're getting older, they both still have a lot of energy.

Happy 3rd Gotcha Day Anniversary, Buster & Lady!


Tuesday, July 10, 2012

Miscellaneous Musings

We made it through the worst of the heat!  The end of last week was absolutely insane.  We were near, at, or above 100 most days, with the heat index soaring higher.  I knew it was blistering hot when the dogs refused to go outside to do their business, and when they did it was a very quick trip (except for the 1 day when Buster thought it would be awesome to lay in the grass sunning himself - weirdo).

I can't believe how quickly Judith's taking off with so many things.  Her little personality is really developing, and she's having a language explosion!  Her ST and I figured she has about 10-15 consistent words now, 2 of the newest being "Bickey" (Mickey) and "nishe" (nice).  Her babbling has gone to a new level, and it sounds like she's trying to say words instead of just stringing sounds together.  A friend recently said that toddlers sound like they're talking "Simlish" - the language from the popular life simulation game The Sims - and I agree with that assessment!

Judith is up to lots of shenanigans, and I can't help but laugh at some of them!  This morning, during her CPT, she sounded like she was giving Buster orders, all while pointing her finger at them (she sees me do this when I have to discipline the dogs, so it's no wonder she picked it up - oops!).  I have no idea what she was saying to him, but it must've been serious!  One of her other favorite activities is to play the piano.  She walks up to it, plays an original composition, turns around and waits for us to clap, claps with us, wipes her hands off, then spreads her arms out at her side and declares "All done!"  It is so hilariously cute, and I'm desperately trying to get it on video!  The little stinker won't do it as soon as she sees the iPod come out, so I have to use some serious stealth if I want to capture this moment.

On the CF front, we've had some interesting moments.  I don't get why Judith's bowel habits change so drastically in the few weeks before a clinic visit, and all it does it make me worry about the "what ifs."  She has been having a lot of problems with some constipation lately, so we're currently embarked on an adventure with Miralax.  Dr. G. and the nutritionist said (over the phone - I called because things have been concerning, and I'm glad I did this) that she's probably having some motility issues caused by the disease, and that she's going to be dealing with this for the rest of her life.  I feel bad for her, but it seems like the Miralax is working - Dr. G.'s goal is to get her cleaned out as much as possible before we see him again, then we'll regroup and decide where to go from there.  The Miralax has led to some exciting (/sarcasm) diapers lately, but I'd almost rather deal with that over the alternative.