Friday, April 26, 2013

What A Week

It's been interesting, and I blame full moon.  It always baffles me how such a natural occurrence can make people and animals go bat crap crazy.

Judith has been a whiny mess for most of the week.  I do think part of the problem are the pesky molars that still have not cut through her gums.  She is gnawing on things more than she previously was, so I'm hoping we're nearing the end of teething.

Last Friday my poor little peanut was so constipated and so tanked up on miralax that I didn't know what to do to give her relief.  She finally was able to go mid-morning, and for the last week her diapers have been rather interesting.  It's been a long time since we've burned through so many diapers in a day, but I'm glad she's cleaning her system out.  On top of that, she started coughing again.  It's not anything super serious like a respiratory infection, but it's happening more than normal.  I just wish I knew what I could do for her to help make it better, and I wish I knew if it was allergies or something else.

Sometime next week we'll get Judith's 4th pair of frames since she got her glasses last September.  It's not a bad break, and the same thing happened this time as the last time: the coiled wire piece that wraps around her ear unraveled and weakened, but this time it actually snapped off.  John and I are trying to keep it taped so she has her glasses for the weekend.  I wish I would've realized it was that bad yesterday so they could've called in the order and had them in the office faster (last time they had the frames there within 24 hours).  This is yet another time when I'm grateful that her ophthalmologist has that 1 year warranty on the frames!

The dogs have kept me on my toes as well.  I'm almost convinced that Lady is starting to develop some arthritis in the shoulder that she injured a few times (I jokingly call it a sports injury, since it usually happens when she's playing).  She started limping early in the week, and I had to restrict her play times so she could rest the shoulder a little more.  Lady still gets rather pissy when this happens, but she's also a little better at accepting it.  Buster's having allergy issues, and keeps reverse sneezing frequently.  Poor pup is so itchy, too.

I was able to snap a cute picture on Wednesday, so since I forgot to do a Wordless Wednesday post I'll share it now.  I like to call it "breakfast with a friend":

Sunday, April 21, 2013

Dollar Challenge!

It's been a week, we're here, and I really don't have anything new to blog about.  Instead, I'm going to pose a challenge to you, and hopefully you'll be willing to help out our team for the Great Strides walk!

I'm starting a Dollar Challenge.  I'm really close to my personal goal, and would like to reach or exceed it!  So my challenge to you is to donate at least $1 to our team.  Dig under the couch cushions, under the car seats, the bottom of your purse, wherever you have spare change lying around.  For every dollar donated, about $.90 goes back to CF patients in various ways, one of them being for the studies for VX-809 and VX-661.  With your help, Journey for Judith can reach our team goal and help so many people like Judith who are affected by this disease!

Donating is easy!  Click on the badge on the right sidebar and enter your amount!  We appreciate anything you can do to help!

Sunday, April 14, 2013

A New Beginning

Today was John's first Sunday at our new church, and I think we both agree that things went well!  We're meeting so many great people, and Judith also has a new boyfriend (who is about a month and a half younger than she is) that she got to play with during the sermon this morning because she was having a very hard time sitting quietly.  It's going to take a while for her to adjust to the new space, but I'm hoping that eventually she'll cooperate and won't act like such a hellion during the service.

John played really well, and it's really great hearing him play a pipe organ again!  He's settling into the new routine, and it's a nice bonus for him that the new church is much closer, because he can be a little more spontaneous with practice times and not have to worry about planning to do as many things at once to account for the really long commute time.

I really think that we're going to like it there!

Friday, April 5, 2013

Easter 2013

Easter is one of my favorite holidays of the year.  The services throughout Holy Week are rich with tradition, as are the liturgies on Easter Sunday.  There is something glorious in the proclamation "Christ is risen, He is risen indeed!  Alleluia!", followed by the singing of the amazing hymns proclaiming Christ's victory over the grave.  The one thing I missed this year (and last year, for that matter) was playing with the brass ensemble to accompany the liturgy.  Ah well, there's always next year!

We started our Easter celebration a little early by participating in the church egg hunt Saturday morning.  This was Judith's first year searching for eggs, and she actually did really well (and got a really nice haul!).  This year there was an extra bonus, as one of the members brought a bunch of her show rabbits for the kids to look at and pet.  Judith spied a beautiful brown bunny when we went inside the church, and immediately called it a "doggie" (the rabbit was on a harness, so I think that's where the association came from).  Once she realized it was a rabbit, she kept saying "hop hop!"

I felt a little sad that evening, because it was the first year in a long time that I didn't attend Easter Vigil services.  I took Judith last year, and it was a nightmare because she did not want to be in the sanctuary and was an overtired, cranky mess.  I told John that there was no way I was going to tempt fate this year, and decided to keep her home so we could observe a normal bed time.  I made up for it, though, by watching the masses from the Vatican and the basilica in Washington, DC.

Easter Sunday was not a chaotic mess for once.  John had to get up early for the sunrise service (his last one, thank goodness), but Judith and I were able to take our time getting ready since we planned to take separate cars so Judith would only have to sit through 1 service and would still be able to fit in all of her extra vest and breathing treatments that she needs right now.  I was bummed because I didn't have a voice and couldn't sing the hymns, but otherwise it was the service I expected it to be.

After church, my parents came to our house for Easter lunch.  We placed some eggs in the front yard for Judith to hunt, and she found and sifted through her Easter baskets.  I was impressed that she didn't melt down too much toward the end of the day, considering it was somewhat busy with a lot of stimulation.

Tuesday, April 2, 2013

Infection Control Policy Updates

Side note: I know I need to write an Easter post, and I'll try to remember to get to that when I have some extra time!

Last month, the CFF updated it's infection control policy.  Medical evidence continues to show that people with CF can spread various germs to others with the disease, so to protect all of the patients they made some revisions to the policy.  3 of the biggest changes are as follows:

* There can only be 1 individual with the disease present at any indoor CFF sponsored event, meeting, or office.  (In the past, multiple patients could be present, and they were to maintain the 3-4 ft. rule.)

* CF patients attending outdoor CFF sponsored events (like the Great Strides walks) need to maintain a distance of at least 6 feet from other patients.  (This is a change from past protocol, which was to maintain a minimum distance of 3-4 ft., so they doubled the minimum distance to better protect patients.)

* Any CF patient who ever had a positive culture for Burkholderia cepacia (B. cepacia) may not be at any CFF sponsored event, meeting, or office.  (I can't remember what past protocol was for meetings or the offices, but I do know that a positive culture for B. cepacia automatically banned patients from the Great Strides walks.)

All of these changes make sense, and I'm glad that the CFF is taking all of the necessary steps to protect patients from potentially picking up a germ that could cause a lot of problems.

For more information, you can read the full infection control policy here.