Thursday, September 18, 2014

What We've Been Up To

I wanted to post a general update, and really had no idea what to title this post.  Things have been stable on the CF front since Judith's July clean out (knock on wood!), so I often feel like I don't have anything to talk about.  So I thought I'd share some of the interesting things that have been happening around here.

Judith's imagination is really taking off.  She's coming up with some interesting stories, and they're often making John and I laugh.  On the flip side, this also means she's coming up with scenarios that aren't real, but are scaring her.  Monsters in her room is a big complaint right now, even though she has her stuffed Mike and Sully from Monsters, INC to help her.  She knows they're good monsters, but more often than not she's ending up in our bed in the evenings, or will occasionally wake us up in the middle of the night.

We were able to spend a lot of time at the amusement park this season thanks to the cooler and nicer weather patterns that we've been in.  Judith tried some new rides and found new favorites that she wants to ride over and over again.  We went to the zoo this past Monday, and I thought she would enjoy it more than what she did since she loves to watch Wild Kratts on PBS.  It may have been her mood, and I want to try going again this fall, because it really is a neat little place.

John and I are getting increasingly frustrated with trying to sell the house.  It's not our realtors' fault by a long shot, and they keep doing everything they can to plug it.  I place all of the blame on the market right now.  It was slow in our area in August, and I'm not sure what September's looking like, but for us it's really discouraging that no one has shown a lick of interest in our house.  We're getting to a point where we can't continue to drop the price, and we're stressed that we could be sitting here longer than we anticipated.  It really is going to take the right person to come along and place an offer, but it's purely a waiting game for that to happen.  And I hate long, drawn out waiting games.

In the meantime, I'm planning out some fall activities for us to look forward to: trips to the local orchards for fall festivals, play dates with friends, and trips to the amusement parks when they're open.  There are some family events coming up as well that will be fun, and we're really looking forward to them.

Another Good X-Ray

Judith's on a really great streak right now, and her latest x-ray looked really good!  We're keeping her on the higher doses of miralax since that's working well for her, and I don't want to taper it back and risk her landing inpatient again so soon after the latest clean out.

Tuesday, September 9, 2014

Appointments, Appointments, and More Appointments

To say the month of September is packed full this year is an understatement.  We have a slew of appointments happening, which wouldn't be quite as bad if we didn't have to go for the regular x-rays to make sure Judith's bowels are un-dilating and going back to normal, but it's still a lot on top of the numerous plans and activities we have scheduled for the month.

Yesterday, Judith had her annual follow up ultrasound on her kidneys, and an appointment with nephrology.  This was to check and monitor the calcification they detected on her kidneys a couple years ago, to make sure things didn't get worse.  We knew going into the appointment that if things remained the same or improved, we would be discharged from their services.  I was very pleased to hear the doctor come into the exam room and say that everything looks the same, that they will attribute the problems to her prematurity (which apparently this isn't totally unheard of for some preemies), and will be discharging her from services!

If there's 1 thing I like, it's to be able to eliminate and knock a specialists off of the already long list that we see.  Especially since I know that the odds of adding more as the CF progresses is high.

The ultrasound was an interesting occurrence, and Judith did spend a fair amount of time during the scan crying and screaming in terror.  She had herself convinced that we were "just getting an x-ray," even though I explained that she was getting a different kind of picture taken that used a magic wand instead of a big camera to see her insides.  To say she was not amused with the scan is an understatement.  All things considered, it went well, but both my mom and I were exhausted because it takes a lot out of you trying to keep Judith still so the techs can get the shots they need.

Coming up later in the month, Judith has her next x-ray, and if that still looks good, we may only have to do 1 or 2 more before we can discontinue them (and hopefully won't need them again for a while).  I am concerned by the amount of radiation she's been blasted with since mid-July, including the multiple x-rays she had while inpatient, and will be relieved when she can get a break from all of that.

We also have her annual eye exam, which could prove to be an interesting experience since I know they'll dilate her eyes.  But Judith is so excited about being able to get new glasses that it's making me more excited to get her some new frames as well.  If I knew we could keep her current frames longer and still have a valid warranty, I'd do it, because they're in really good shape and she doesn't seem to have outgrown them.  I can guarantee that I'm getting the same brand, because it has been absolutely fantastic not having to worry about her snapping something constantly and going for repairs every few weeks!  The most I've had to take her for were some adjustments to the nose pieces, and in the last year I think I can count on 1 hand how many times that has happened.

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!