Wednesday, September 25, 2013

(Not Quite So) Wordless Wednesday

I just realized I never updated after Judith's eye exam last week.  Thankfully, there isn't a lot to report!  Everything's looking good, and while she struggled and fought the exam a bit, it really wasn't too bad and could've been much worse.  Her vision did change, but it wasn't anything major and was just the normal changes they see at this age as they grow and all.  So a new, stronger prescription was needed, and we also got a new pair of frames since her last pair was getting small.  These frames are bigger, and I'm extra excited for her because she has "big girl" temple pieces!  No more cables that wrap around the ear!  This means she'll be able to learn how to put them on herself, and she'll have an easier time pulling them off while I don't have to worry about her throwing the adjustment out of whack.  They're big, and we're back to a point where they're sliding down a lot (which means a lot of reminders from me for her to push them up so she can see properly), but it won't be long before she grows into them.

This is from Monday, after we picked up her new glasses:

Tuesday, September 17, 2013

Weekend Fun

We had a long and busy weekend, but it was a blast!  The weather was absolutely gorgeous, and I'm so glad that it's really feeling like fall.  The cool weather made our weekend activities that much more enjoyable, and it was nice to not be sweating our butts off like we were earlier in the week!

On Saturday we decided to go spend a few hours at Hersheypark.  It was a nice change to be able to walk around in jeans and a long sleeved tee instead of shorts and a tank top and still feel like you have to remove about 5 layers including some layers of skin just to cool down!  The temperatures didn't even get out of the upper 50s, which was unexpected as they thought it would get into the 60s, and with the cloud cover I was hoping that it would mean the crowds would be minimal/mostly locals would be milling around.  For a while, we didn't have to worry about long waits or bigger crowds, but as the afternoon went on it filled up so we decided to leave since Judith was starting to melt down anyway.

Sunday was more typical of what Sundays usually are, except we had the chance to go to my cousin's house so we could visit with them and my aunt and uncle.  They were at the shore for a few days, and stopped there before they headed home.  My decision to spend the day with Judith at my parents' worked out well, because they got to see Judith again.

On Monday, we had the rare treat of John taking a day off and being able to go do something fun as a family.  Normally when he has a day off he uses it as a work day for church stuff, but since the weather was awesome and we knew school was in session, we decided to go to Zoo America for the morning.  Judith had a blast looking at so many of the animals, and absolutely loved the fish in the pond in the bear habitat.  I wish I would've been able to take pictures, but my new camera body hadn't arrived yet (side note: I'm 99.99% sure my camera body was fried one of the days during Judith's hospital stay, because I stupidly didn't think to take it and myself out of the room the night they did the x-ray in there. It was a used body to begin with, and was a fantastic starter body to get into the DSLR world, but it was still an expensive mistake, and a really dumb one as well.  I learned my lesson, that's for sure.  And now I'm getting a super early birthday/Christmas present so I have a camera and can take lots of pictures again.).  She did well for the first half of the zoo, but about halfway through she just didn't have the attention span anymore so we called it a day and went to get lunch.  We're already planning to go back again in the next couple of months, especially since I want to try to hit the habitats she didn't really get to see because she was done.  Anyway, we finished off our adventure with a trackside lunch on our way home, and Judith was so excited to see 3 trains!

Wednesday, September 11, 2013

Cleaned Out

Judith had an appointment at the CF Clinic on Monday to follow up with her latest backup.  While she wasn't 100% cleaned out, we did manage to get the bulk of it to move!  There was still some poo stuck in the right side of her colon, so we had to continue doing the miralax 3-4 times a day to try to get rid of that.  Yesterday it looked like things were at the point her team wanted them to be at, and today we got the ok to go back to a regular diet instead of staying on liquids!  Yay!

I was concerned about a cough that was developing, and made a point to mention it during her visit.  Her lungs sounded clear, which is good, but Dr. G. decided to do a throat culture to see if there could be anything festering that's causing the cough.  I'm hoping it was just from all of the pollen in the air, and not the MRSA flaring up or even a pseudomonas infection.  I should know the results next Monday.

Being hospitalized really set back Judith's compliance with appointments.  We were on a good path where she was more ok with her doctors examining her, and didn't scream bloody murder, but those days have flown out the window.  While she didn't necessarily shriek like she has in the past, she did make herself as stiff as possible, was shoving away Dr. G's hands when he tried to listen to her, covered her mouth with her hand (that was actually rather amusing, because she didn't do it before and discovered that she could do that to try to prevent him from getting the cotton swabs in there), and clamped her jaw shut so she could try to avoid the culture.  I know it'll take some work to get her back on the better path again, but for now I feel bad for her because she doesn't quite understand that visits now aren't always going to mean needle sticks and NG tubes.

Sunday, September 8, 2013


Last Thursday, Judith and I had a long day at Hershey for some of her follow ups.  The main reason we went was for her 6-8 month check for her kidneys to monitor the necrocalcinosis.  But because of her recent hospitalization, her CF team wanted to make sure that she wasn't backing up again and ordered another abdominal x-ray.  I told them that we were already coming for this appointment, so they were able to send the orders to the lab so we could have the scan done the same day.  I knew it was going to lead to a long morning of appointments (and basically a long day period when you count the drive), but it was much easier to do everything at once rather than making multiple trips.

Our morning started with an ultrasound on her kidneys.  I wasn't sure how Judith would react, especially since we had to go into the children's hospital to get to the pediatric radiology department, but she was surprisingly chill as we walked in and checked her in.  Even during the actual scan she cooperated relatively decently.  I was able to keep her still enough this time, and we didn't need an extra person to help restrain her so they could get the shots they needed.  While we were in the department, we did the abdominal x-ray, and that was a little more traumatic for her, but at least it was over quickly. We then had about an hour to kill before her appointment with the doctor, and I was glad that she was content with my iPod and watching Sofia the First while we waited.

One of the neat things about PSHMC is it's a teaching hospital, so every now and then med students sit in on and participate in appointments.  Thursday was one of those appointments, and Judith was examined by a med student first, and then examined by the actual doctor.  I was proud of her that she was really good during the med student's exam and didn't pitch one of her more common fits.  Anyway, the renal specialist also checked Judith out, and both the doc and the med student said everything sounded good.  The doctor was able to read the ultrasound pictures, and the good news is nothing has changed!  She said that the ultrasound pics from a few months ago are practically identical, and they want to see that or improvement.  If the necrocalcinosis would've gotten worse, then we would have a problem.  We go back in a year for another check, and she said that if things still haven't changed (or if they start to improve), they won't need to see her again and will discharge her from their team.  Yay!

That was the high point of the day.  The bad news is we're right back at square one with Judith's GI issues.  Even though we've been giving her the miralax regularly like Dr. G. wanted us to do, her x-ray showed a moderate amount of buildup, and she was full of poop again.  When I called the team to see if they had her results and they told me what they saw, I was worried they would readmit her to do a flush  with Go Lightly, but they wanted to try flushing her at home instead.  Her team's really good about trying to keep the patients out of the hospital as much as they possibly can, so while I was trying to figure out the logistics of dealing with tons of poo on mostly carpeted surfaces.  It's been a relatively interesting weekend so far, and we're seeing results but I'm not totally sure if it's what they're looking for.  We need to do a repeat x-ray to see if the miralax did the trick, or if we'll have to resort to something stronger.  In other words, if there's still poo clogging things up, are they going to want to continue higher doses of miralax at home, or readmit her for closer monitoring and more Go Lightly?