Wednesday, August 20, 2014

Another X-Ray

On Monday we made the trek to clinic for Judith's next abdominal x-ray, and I was glad to hear that our team is pleased with her progress and things are looking good!  We're tapering down on the miralax gradually, because we don't want her to back up and end up inpatient again (at least if we can help it), so I'm hoping that will help her get back to a more normal pattern and we can start potty training again.

Saturday, August 9, 2014

Gross Things That Can Set A CF Mom Into A State Of Panic

Because of the thick, sticky mucus that resides in a CF patient's body, germs have a tendency to really set up shop, fester, and cause big problems.  I find that I am and was no different than a lot of CF parents, especially when Judith was so little.  If you've been following us for a long time, you may remember reading about our times under lockdown to protect her from a bad flu outbreak, RSV, etc.  And as a new CF parent, I wanted to sanitize everything and was pretty anal about who and what Judith came in contact with, just to name a few.  There are still things that I won't let her do (barefooting it on a hospital floor, for example), and honestly I wouldn't let any child do that because hospitals are gross places.

There are also many things that I have learned to relax with so Judith can have as normal a childhood as possible.  CF is a part of who she is, and yes we do have to revolve some parts of our lives around treatments and appointments, but I also don't want it to become so consuming for her and us that she won't get to experience some normal childhood things.

As a side note, I totally realize that this is what WE are choosing, while other families will choose to do something else.  And that is completely ok.  No two families are the same or function the same, just like no two people with CF will be affected by the disease in exactly the same way from every angle.  The important thing is choosing to do things that work for your family and your individual situation.

I admit that part of the reason for this post is a pat on the back to myself, because I didn't flip out and immediately want to put Judith in the tub for a bath or want to sanitize everything she would come in contact with.  In fact, with her starting to attend Sunday School this past year, both John and I were able to really learn to relax over her touching "community" toys that many other little kids were handling during cold/flu season.

This past Friday, we went to my in-laws' house for a visit.  My father-in-law has a good sized hobby farm, and Judith wanted to go see some of the animals.  My father-in-law walked her around, showing them to her, and she tried petting some of them but couldn't get close enough to actually do it before they wandered off.  We just made sure she washed her hands really well with soap and water before we had lunch, and I could see that she got really dirty while she was with her grandfather, but she also had a lot of fun.  At least she didn't drink stagnant water out of a puddle like she did last year around this time.

I think what makes a lot of CF moms panic, at least initially, is the fact that some of the really nasty bugs our children can culture, like pseudomonas, live in soil and water.  Trust me, it's something that I think about, and is the reason why we get Judith to wash her hands as soon as we can get her to a sink.  But for us, it's not a hill we're going to die on, especially since she loves animals and loves to dig.  So I don't want to keep her away from it, and want her to be able to enjoy something that's a pretty normal part of childhood.  I feel the same way with splash parks/water parks and pools.  Some of the only things we avoid are any bodies of stagnant water and hot tubs.

I also have to laugh at myself a bit, because I'm realizing how much I did put her in a bubble, mostly out of necessity, but there were those small little things that I now realize weren't worth panicking over.  Sure, I still have days when I panic over something silly, and I would think that's normal for a lot of CF moms.  I've been working with myself, though, to try to relax, because once she goes to school she's going to be doing things that I can't control, and is going to be exposed to way more than what I can control as well.  We're certainly still proactive and do what we can to keep her as healthy as possible, but I also am realizing that we're rapidly getting to the age where we're going to have to start letting her get into things and letting certain things go because it is out of our control.

Wednesday, August 6, 2014

Miscellaneous Musings

I kept forgetting to update the blog, because things have been rather busy around here the past few weeks.

Trying to get things regulated for Judith has been... interesting.  I know why we have to keep her on the high doses of miralax, and with her bowel as stretched out as it is, we need to make sure she's taking all of it to keep things moving so we don't end up inpatient again anytime soon.  However, I also knew that it was going to create some nightmare diaper change situations based on her past reactions to 1+ caps of miralax, and I was spot on.  The latest clean out has put a total halt on potty training, even for pee.  I want to try the training underwear to see if that will help her realize when she's wet, but with the poop situation I need something that's going to contain that mess.  I don't even trust to put her in a pull up because they're not absorbent enough.  The good news is we were able to cut her daily amount back to 1 cap a day instead of alternating between 1.5-2 caps a day, so I'm hoping this will help.  I'm also feeling guilty because we're going to run another fecal elastice test to get her pancreatic function numbers since that hasn't been done for more than 2 years, and I haven't collected the specimen yet.  They want it a certain consistency (gross, I know), and I'm honestly not even sure how I would've collected something in the past few weeks.  The good news is that Judith's 2 week follow up x-ray looked good: she's not backed up, and the loops that were really stretched out are showing signs that they're starting to move back to a normal state.

Still no action or news on our house.  The market in our area really slowed down in July, which is apparently typical, so we kind of hit at a bad time.  Things are showing signs of picking up, and we're getting ready to tweak the price to freshen things up, so I really hope this will help get us an offer soon.  John has a little more patience with this than I do right now, which is funny because he's usually the impatient one.  I'm starting to get exhausted looking at properties and trying to find one that both John and I like and that will work for our family.  We did find 2 houses that we really liked, but 1 already sold and I have a feeling the other will sell before we get a chance to submit an offer on it.

We had some gorgeous weather last week, and I really want that back!  For July standards, it was way abnormal: low temperatures and very low humidity.  It felt more like fall than the middle of summer, and considering this happened at the end of the month it completely threw me off, making me think that September was finally here.  Talk about disappointment when I realized that we still have to get through August!  Knock on wood, the entire summer hasn't been crazy hot, and I hope it stays that way.  We've certainly had some hot days, and the humidity levels have been high, but compared to last year, this year has been pretty awesome.  I like not having to run the air conditioners and saving some money on electricity!

Friday, August 1, 2014

Birthday Boy!

Today Buster is 9! He is handling his senior years very well. I'd say he is slowing down with age, but considering this is the pup who takes laziness to a new level, it's impossible to tell if he really is slowing down! He still loves to snuggle, burrow under any and all blankets, and Ned's to know that his Lady is happy. Buster has a soft spot for Judith... when she has food. The rest of the time he tends to ignore her, choosing instead to claim the sunbeam coming in through the windows or to claim the coveted spot on the couch next to me.

One thing that I did notice is that he tends to follow me around the house more than usual. In the past, he was ok being in another room while I was working in another, but now I know to expect my little shadow to make an appearance if I'm gone for more than a few minutes.

Buster certainly has his quirks, but he has his hilarious moments as well, and he helps keep things interesting.

Happy birthday, Buster!