Kids Update

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Thursday was Physical Therapy/Gymnastics
day. We got and dressed to the chant of
Play Jessica (her PT, pronounced by Kajsa as – Zhessa), Play Jessica!

We spent the next 50 minutes climbing
stairs using our right legs, descending stairs using the left, playing in a
kneeling position, jumping and transitioning from one leg kneeling to standing
on tip toes.

Then it was 1 whole hour until
gymnastics. Whatever would we do with
this time? I know! A special gymnastics
outfit sure would be nice. After all,
all the other little girls have them. Now, I KNOW that they sell them at Wal-Mart. But, I just can’t imagine going there without
checking every other option first. So
off we headed to St. Vinnie’s. They
didn’t have any pretty little ballerina looking outfits, but they did have this
cool wetsuit / UV protection suit with little scalloped accents on the
hips. Hmmmm…dual purpose purchase; I
was so very sold!

Five minutes to get to the Y. Breezing in just under the mark, I found that
the flakey, spaced out girl who usually teaches the class was absent. Darn, and I so love talking to a brick wall. Instead we had the woman who usually sits at
the front desk. She was much more
instructional and interactive. We did
back flips & forward rolls. The
trampoline was still a challenge, but she’s really getting the hang of the
balance beam. Another nice note was that
when we went over to the parallel bar station and I mentioned that we had to be
careful with pressure on Kajsa’s abdomen due to a g-tube and catheter; she did
NOT recoil in horror. Nor did she appear
terrified at the thought of touching her in any way. She looked me straight in the eye and said,
“My son had a g-tube. Let’s see how she
does.” Bra – freakin’ – vo, new
lady! Maybe Ivy will not be there next
time. Maybe we’ll have the knowledgeable
woman with a real live pulse again!

Then it was off to pick up Maya from the
health food store. On Thursdays she sits
in the little back café area to do homework rather than riding the bus. Generally, we buy our groceries for the next
week, but this week was different. We
needed to high-tail it home for yet another meeting. I had just enough time to wolf down a bite of
breakfastlunchdinner, change the baby’s diaper and call my mom for some advice
about the meeting that I was to attend.

You see, Maya is bussed 45 minutes into Prescott. This transportation is provided by the
Yarnell school district due to the fact that they don’t have a middle
school. Last year they provided 7th
grade with plans for children to transfer for their 8th grade year
to a middle school in
Prescott. Well, last winter, when we moved here; I
approached the Yarnell school district (YSD) for information about their
programs.
 

I was informed that they not only did not
have honors classes, or many extra-curricular activities, but she would be
changing schools again in 5 months. This
really wouldn’t do. Not only had she
just been uprooted, but we wanted her to have every opportunity for learning at
the level at which she shown herself capable. So I asked whether or not children can go to school in neighboring
towns. This is when our conversation
abruptly ended. End of story.

It was up to me to investigate schools
in
Prescott. Our first step turned out to be our last.  Prescott Mile HIgh Middle School had everything we wanted for Maya. It
had a wide range of extracurricular activities, both physical and intellectual
in nature. There were honors programs
galore and the school was academically, one of the best in the state. In addition, it was very centrally located,
providing the opportunity for Maya to safely meet us at a variety of nifty
shops, cafés and even the public library. We were sold.
 

We carpooled with Chrissy and Shaun,
whose kids also attended school in Prescott
. And things ran rather smoothly. Then at the beginning of school we were
informed that bussing would be provided to Maya. This could not have come at a better
time. Chris was starting school in the
evenings and the neighbors’ children are now schooling locally.
 

All went well for one term. Then I got a call from the superintendent for
the YSD. He informed me that Maya’s case
was to be addressed at the school board meeting on Thursday.

“What case?!?!”

I was informed that all of the other
middle school students from our area went to Granite Mountain Middle School
and that there were complaints of preferential treatment. There would be an item on the agenda to
discuss what to do with her.
 

Can’t you just imagine my response to
this? He quickly realized that he was
not talking to a golden retriever of a mom. I was livid.

· “How come this is the first I’ve heard
of this?”

· “Why would no one give me any
information last year about scheduled transfers?”

· “She’s the editor of the yearbook and an
A student in honors classes!”

· “There’s no way for us to get her
there.”

· “If you transfer her, it will be a cruel
way to punish her for your incompetence and lack of communication.”

He calmly said, “I have spoken with the
vice principal of her school. He agrees
with everything you’ve said. And, I’m
not going to recommend that she change schools. You are invited to the meeting. I
hope you’ll come.”

“Oh,” I replied, relieved.

This of course brings us back to last
Thursday:

Driving down the road, I was quite
nervous, but felt confident in my preparedness.

I’d mapquested the distance from one
school to another, grabbed a copy of Maya’s progress report, perused the ACLU
website, and most importantly consulted the highest of all powers – my mom.

I walked in to find the superintendent
and Maya’s bus driver waiting to introduce themselves to me. That was rather encouraging, but you know me
— screw the glass being half empty or full…I usually can’t even find the
darn thing. The meeting began promptly at 7:00
. At this point I had the distinct pleasure of
listening to the minutes & old business. It turns out that the school is in fact going to tear down the barn, as
it is less of a liability issue for someone to step on a rusty nail than to
have an old dilapidated building fall upon the heads of teenagers as they are
making out.

During this lively discussion, I sat
trying to keep Kajsa from screaming, “Poopy!” at the top of her lungs and/or
banging on the aluminum folding chairs with her pen. Eventually (40 minutes later) they arrived at
the new orders of business. Luckily, we
were the first item addressed. I felt
like I was going to vomit.

There I sat feeling vulnerable and
clueless.

The important looking leader lady read
the information. The superintendent and
bus driver both put in their accolades for my girl. Then the woman asked me if I had any
questions. “Uhhhm, yah, so I’m a little
confused. Is it a financial issue? Or, errr, what’s the deal?” Eloquent to the hilt, I tell ya.

“Oh, no, it isn’t about money. It is because we got a report that the kids
at Granite Mountain
were standing out in the elements unsupervised for half an hour after school
lets out.”
 

Having recovered my composure at his
point, I swiveled in my chair to ask the bus driver, Richard, if this was
true. He assured everyone that it took
10-15 minutes to drive from one middle school to the other and that the
students were supervised by no fewer than 4 teachers as they stood beneath a
canopy. As he said this, I could actually
feel the blood returning to my hands and face.

After some debate, the school board
decided that it was their moral obligation to provide education (and therefore
transportation) to all students. They
further concluded that it would be unfair to punish a student for their oversight
and that if there was to be a change in procedure, that it would be done at the
beginning of the next school year.

Relieved, I went home to begin Kajsa’s
nightly medical routine and to say goodnight to Maya.

 

On Friday we drove down to Phoenix 
for immunizations. It is important that
she be current prior to transplant, as she will have (essentially) no immune
system afterward. She was scheduled to
receive Hepatitis A & B.

On Wednesday, I spoke with Julie, the
transplant nurse, who thought it would be great if I could bring Kajsa by to do
a blood draw, since we were going to be there anyway. This particular draw is for her viral
panel. It will asses everything from
chicken pox antibodies to HIV exposure. It is a precautionary test that all potential transplant recipients must
undergo…a hurdle, if you will.

So arriving in Phoenix at 1:00  we sauntered over to the nephrology clinic where Julie shuffled us back to the
phlebotomist. Unfortunately, Kajsa has
now reached the age of foresight. She
recognized immediately what was about to happen and began to cry. 20 cc’s lower, she was released and given a
lovely set of Sponge Bob, Cinderella & Nemo stickers. At this point, we realized that we still had
half an hour until we were scheduled for the shots appointment. My thinking was: why not do a couple more
tests if she’s up for it?

So we ran over to the main building
where Kajsa was quickly registered and brought down a hallway to have her
EKG. She was very patient and even liked
the funny stickers that you attach the jumper cable looking cords to. The tech was quite impressed and gave our
little lady a lovely printout of her incredibly healthy heart. Lub dub, lub dub – and it was back over to
the outbuilding for us.

We ended up a little late for the
appointment, but since it was just a booster with a nurse, there was not any
issue. Two more needles down and we
figured, hey we’ve still got some time. Back over to the main building, through the cafeteria, past the surgical
waiting room & around the corner to radiology. “Hi, can you fit us in for a chest X-ray.”

45 minutes of bouncing off the walls
later, we’re down another hallway and into imaging. Kajsa held perfectly still and even smiled
for the camera. She was rewarded for
this with a lovely sticker of a dinosaur getting an X-ray and the toy of her
choice. Yes, it does make creepy noises
and she loved playing with it all the way home.

Finally, it was time to leave and go
home (via the pharmacy, of course). By
the time we got home I was exhausted, but so happy to have been able to check
off three of her tests. Yippee!

(Heaven help the next person who smugly
smirks at me when I reveal that, yes, I am a stay at home mom. I hate the notion that we don’t do anything
with our days. But enough of that!)

We are meeting with Dr. Fabrega, Kajsa’s
future surgeon on the 24th and will at that time pop downstairs to
perform Kajsa’s final blood test. This
is the tissue typing test which takes a week to 10 days for the results to come
in. After that, Julie submits these to
the insurance company. It has typically
taken an additional 3-5 days to get authorization to perform the surgery. Then we’ll be ready to go onto the list! Kajsa should be completely ready to be
transplanted around mid-November. I
guess now we need to start packing our ‘get away quick’ bags and shopping for
cell phones.

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9 thoughts on “Kids Update

  1. I heard segments of this story from die ubermom, but it was nice to hear your version. The thought of the little K girl getting a transpant is exciting, frightening, and some other emotions I can’t find a name for.

    The owner of the local music store is an ex-diabetic who had a kidney-pancreas transplant a couple of years ago. He works everyday and seems none the worse for wear except for the near blindness that came from his diabetes. It seems so wierd to hear someone say they used to be a diabetic.

  2. You certainly are busy!

    So glad that everything worked out with Maya’s school. I can’t believe they would even make it an issue so much later.

    Kajsa sounds like such a brave little girl (and you a brave, strong mother). I hope that all the tests have good results.

  3. Wow. I am so glad that Kajsa is moving through the process so quickly now. I hope you can get through this with more stickers and smiles and that everything goes well.

    And I am really glad Maya’s school is taking responsibility and behaving as they should. You are a formidible force to be reckoned with. Don’t mess with SAHM!

  4. rodney roe:
    Yes, there are so many emotions. It’s nauseatingly exhilarating!

    I was jabbering away at the transplant nurse while we were speed walking through the halls. She said it must feel fast. (The process, that is.) I replied, “Yep, I feel like I just nudged this tiny snowball off the edge of a mountain.” Now all I can do is try to keep up with it as is grows and speeds up.

    It is weird to hear of people who used to be diabetic. Did you know that Chris’ mom has been off of insulin for almost 2 years now?

    Gawdessness:
    Sorry to exhaust you. I hope you’ll recover. I’m starting to.
    Thank you for the support!

    ccw:
    As for the school board stuff, all I can say is that we live in a reeeaaalllyyyy small town. I think buttinskiness just comes with it.

    Thank you for the compliments – I’m confident that all results will be favorable. We already have some of them back. She’s O positive and HIV negative. So far so good!

    Running2Ks:
    Stickers and smiles definitely work to grease the palm of my little one. You can get a long way with crayons, too.

    And yes, I am SAHM – Hear me roar!

    (We be SAHM-in’ We be SAHM-in’ – Ooooh, the ghost of Bob Marley’s gonna get me!)

  5. Wow, I really admire your ability to remain upbeat with so much going on. I truly hope and wish for the best for Kajsa. By the way, your children are absolutely beautiful.

  6. You are an amazing storyteller, Rowan, and a dynamically protective and loving mother. I honor you for all you do for these wee girls. I hope you don’t mind that I am linking you to my blog. Please let me know if I shouldn’t put you in the doula section. I wasn’t sure if you are currently doing doula work, but caught in one of your posts that you are a doula, too!

    Hh

  7. Wow, Hannah…

    Thank you.

    I haven’t attended a birth since February, but consider myself active. I simply live in a small enough community that there aren’t a lot of women having babies at any given time.

    I would be honored to be listed on your blog.

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