Culture results are now in…not shocking by any means…just disappointing. Julia has tested positive for pseudomonas and Wednesday is her big day. We will be heading into Primary Children’s Medical Center on Wednesday at 1:00 to be admitted for a “clean-out.” We have been preparing mentally for this for quite a while now as the trend with Julia’s cultures seems to be pseudomonas positive. I have already described what a clean-out is to my loyal readers, but for any newbies out there, a clean-out consists of a PICC line placement and a very strong dosage of various antibiotics. Julia’s treatments will be bumped up to four times daily, instead of her standard two. The duration of a clean-out is typically two weeks…yes a two week stay in the “hole” as many CFers call it.
My hope is that Julia will only be kept in the hole for three to four days. Why so short? I’m hoping Julia’s CF team feels we’re are competent enough to administer IV antibiotics at home. So, we hope that after a few days, Julia will be sent home with PICC line in place and a rigorous daily schedule of treatments to be accomplished. If not, we’re looking at a two week stay at PCMC. That’s a long time!
I am very numb at this point. Many experienced CF parents are probably rolling their eyes and saying, “Buck up sister!” This is all so new to me, to our family, so it’s a big deal right now. I’m sure years down the road, no one will even know when Julia even goes in because it will just be a part of life, a part of what we do to keep her healthy.
I never imagined in my life that any of my children would have to endure something like CF. I would have never signed up for this voluntarily. We have been born into this CF family, a family that you don’t choose to be a part of, a family that I would adopt out of if I could, but a family that is simply wonderful.
However, CF is gonna wish it didn’t choose our family, because this family has a momma that will give anyone and anything a good arse kickin’ if s/he messes with one of her kids. Look out, because I’m commin’ for you CF, so you’d better hide and take your little buddy, pseudomonas, with you!
Our neighborhood is simply fantastic! They have our backs and I know that we’ll get through this one and many more to follow.
FUCF
Determined,
Julia’s Momma
Julia...she's simply amazing...what can I say?
Wow, the past couple of weeks have been quite the adjustment! School, school, school…is all that is going on around here. School started for me last night. I am taking two classes, equaling six credits. One is a class on assessment of the reading process and the other is an early literacy instruction course. I am so excited about the material we’ll be covering in these classes as well as the opportunity to actually get back out into the field with some students as I fulfill my assignments. I will be working in an elementary school in Rose Park, with a demographic that I am most familiar with. It should feel like going back to Maple School and that’s what I’m so excited about. This semester will be filled with tons of hard work, but I look forward to experiencing some growth along the way. What a treat it is to finally be able to participate in some good adult, academic conversation! Even more exciting is that most of my classmates are kindergarten teachers! Yea for kindergarten! Way to represent!
I've officially traded the diaper bag for a backpack...
When Mom's away at school, Olivia keeps Julia company during treatment.
In other news, I had Julia’s preschool parent meeting today. I’d be lying if I said I wasn’t completely nervous about Julia going to preschool next week. I brought the two teachers the booklet provided to us by Primary Children’s Medical Center about CF and school. I told them to read it and to give me a call so we can set up a time to meet together to discuss Julia and answer questions. This is new and uncharted territory for me. We may need to have an IEP (Individualized Education Plan) drawn up just to cover everything in writing, but for now, I just want to meet with her teachers and go from there.
If any of you more experienced CF parents want to give me some advice, let me have it please. I’m open to anything and everything. I know how to send a kid to preschool, but not how to send a CF kid to preschool, not at all.
Julia is in for a big shocker when I walk out of the door and leave her at preschool. I’ve told her all about it, but I fully expect some drama. She has been enjoying having the house to herself when the older two are at school. The first day we dropped Olivia and Austin off at school, I said, “Well Julia, it’s just me and you.” Julia kept saying the rest of the morning, “It’s just me and you mom. What are we going to do?” She cracks me up!
Julia and I at playgroup...just me and Julia!
We are still waiting for Julia’s culture results, but I’m expecting the call any moment. The wait is killing me! I just want to know…
Today, Olivia started Kindergarten! She has been so patient, waiting an entire week longer than her brother to start school. She had a great first day and she is excited about her new teacher and her new school.
So grown up!
Adventure awaits!
Today we headed up to Primary Children’s Medical Center for another culture…or as we tell Julia, a “throat tickle.” That’s a bit misleading as there is nothing tickling about a long q-tip being jabbed down your throat and swirled around, causing coughing, gagging, and near vomiting. Julia hates the “throat tickle.” I can’t say that I blame her, but it has to be better than a shot, right?
Well, now we wait a week or so for results. This will be a really long wait for me because the consequences of a positive test have been weighing on my mind for several weeks now. Positive means “clean-out” time for Julia. If it’s negative…party time! I’m the type of person who expects the worst and hopes for the best. Some may call me a negative person, or a pessimist, but this works for me. This disease seems to do nothing but disappoint, so I like to prepare, or gear up for the disappointment. Why expect the best, only to be devastated if things don’t go your way? This week we are thinking negative…negative culture results…yes please! Pseudomonas, please just go away!
Olivia and Julia get acquainted with rainbow horse outside of PCMC.
Olivia and Julia love seeing the "castle" at Westminster. Mom's school is so cool that it even has a castle! My girls are the cutest looking freshmen on campus.
This one's just for fun! I call it...Julia discovers her self worth.
Austin is now a second grader! He had a great first day of school and he seems very excited about his new school and new teacher. He’s growing up way too fast!
Another year with a great kid!
Eastwood here I come!
I have been playing around with my sister’s Nikon D90 and just lovin’ it! This camera is totally amazing and will probably take me years to figure out…can you tell I totally want one? Well, here are some photos I took of my girls this weekend. These pictures are truly beautiful…such pretty girls! Happy back to school everyone!
Julia & Olivia
Pretty girls!
Proud Julia
Such a beauty!
It’s that time of year when the kids return to school. Austin will start Monday! He is so excited…and let’s just say, I’m so ready. I can’t wait to have a little more quiet and a little less fighting. Olivia had her Kindergarten picnic today and I’m excited to share some pics because I took them with my sister’s really nice camera and they are so beautiful! I someday will have a nice camera, but for now I’m having fun borrowing one! Olivia starts Kindergarten in a week and she can’t wait! She wishes she was starting right along with Austin. Julia…she’ll be starting in September. I’m super nervous at this point as this is my first with a special needs child. I’m sure it will be a good thing for Julia, however she’ll be very surprised that I’ll be walking out the door without her, even though I’ve told her all about how mommies don’t go to preschool. This is a new chapter for me as all of my children are in school in one form or another. A new adventure for us all!
Beautiful Julia!
Beautiful Olivia!
Austin at Eastwood
Monkey girl!
Olivia monkey!
We have finally returned from our Yellowstone trip. It was amazing! The kids had a blast! It is definitely a trip that we’ll do again. Even with driving around the park for four days, we still didn’t get to see everything. The park is huge and the sights seem endless. It is truly beautiful and spectacular in Yellowstone.
We took the RV, which was perfect for touring the park during the day and sleeping in at night. The campsites did not have any utility hookups, so in order to pull off the logistics of Julia’s care, the RV was perfect. Some nights I was cutting it pretty close with nebulizer sanitation. Generator use was between the hours of 8 AM and 8 PM, so there were some nights that I may have been running it at 8:05, just trying to get medical equipment steamed for the next day. We pulled it off with Julia not missing a single breathing treatment during the trip.
It was the perfect trip to end our summer break. Austin starts school on Monday and Olivia begins the Monday after that. Wow, Julia will start preschool in September…and I start my master’s program this month as well. Life continues to be busy for us as always.
We took over 400 pictures on our trip. Here are a few…enjoy!
Friday we had a fun summer dinner with people from our church and people in the neighborhood. It was filled with great activities for the kids. The girls enjoyed riding the horses that were brought in by a very generous neighbor. There was a huge water slide that my kids drooled over because I didn’t bring towels or bathing suits, but they did get to throw the ball at the dunking booth and get their friends wet.
Austin waited in line for an hour to do the zip-line, which gave me much anxiety. I was waiting for it to break at any moment and send some poor child plummeting to the ground. Luckily, it held up. It was very high up in the air and very long, extending at least a football field in length, maybe a bit more. Anyway, great fun for a Friday night. We have such a great neighborhood here. I can’t believe that it will be a year next month since we’ve been here. We love it!
Julia and Dad on "the white one." Julia always wanted "the white one."
Olivia and Dad going for a ride
My girls and baby Crew
Austin braves the zip-line
Tuesday night we got some free tickets to see the Wiggles. It was a live show and Julia just loved it! She has always liked the Wiggles and they have helped us get through some pretty long treatments, so it was a treat for her to see them in person. She cried all the way home wanting to see the Wiggles again.
We're about to see the Wiggles!
Julia can't get enough.
They even drove their big red car on stage.
Julia wore these goggles all day yesterday. They even stayed on for her nap.
Austin at the park...can you tell it's hot and humid?
Such a good boy...anyone want to dog sit for us next week?
Olivia enjoying the park in the heat. Notice Julia in the background...yes the goggles are still on.
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