Monthly Archives: February 2009

Rainy Weekend

Apparently we should be preparing an ark or something this weekend according to the weather reports.  As I am not a “singing in the rain” kind of person, I shall remain inside with my warm coffee and laundry.

Yesterday was indeed a pretty decent day.  Jessie was able to meet with the tutor and completed two tests.  She hasn’t been able to do two tests in a row in a long time.  Then she made oatmeal cookies (after I’d gone to bed).  I came close to having an oatmeal cookie for breakfast this morning, but resisted.  I’ll see if I can track down that recipe and add it later. 

My son’s best buddy from Virginia came in for a visit this weekend, so they’re happy little clams.

The doctors office called me yesterday afternoon to report that they had received all of the information that they needed and will, hopefully, get the forms for school completed early next week.  Yeah.

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Happy Friday Pictures

TGIF and TGIF!
Brief update:  Jessie woke up feeling better than she has for the past couple of days.  That’s good.  
I haven’t resolved the school issue yet.  Hopefully around the first of next week.  

I’m adding in a couple of completely unrelated photos that just make me laugh.  I hope they make you laugh too.

Sophie, aka Useless Dog of Endless Naps

Sophie, aka Useless Dog of Endless Naps

 

Oreo, aka Cat Of 1000 Evil Faces

Oreo, aka Cat Of 1000 Evil Faces

 

Jessie, aka Girl of 1000 Sarcastic Comments

Jessie, aka Girl of 1000 Sarcastic Comments

 

Wes, aka Boy of 1000 Bicycle Mishap Scars

Wes, aka Boy of 1000 Bicycle Mishap Scars

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Waiting

Yesterday began on a good note.  Jessie did get her braces off and her little (expensive) teeth are just beautiful.  Then, I hate to say it, but the day kind of went south from there.  

First of all, on the way back from the dermatologist, Jessie said her head was getting worse.  

Without going into too much detail, upon returning home, I had to get on the phone with Fed Ex over a delivery “mishap” on their part that is completely unbelieveable.  Let’s just say that there is an expensive bike part which has now made it across the country five, yes five, times – completely due to errors on their part.  They apologize profusely, then say there’s nothing that they can do but try to grab the box off the truck at the next stop which is in 5 business days.  This, I can assure you from past experience, will NOT happen.  Sheesh.

Next, I hear from the school that they have not received the form from Jessie’s doctor here in Georgia concerning her homebound status.  I call the doctors office, actually speak to the nurse and she reports that the doctor (note: this is a new doctor as we just moved to Georgia) received the letter from the other doctor in North Carolina stating that Jessie has been diagnosed with Neurally Mediated Hypotension as the result of a positive tilt table test and Clinical Chronic Fatigue Syndrome.  Our Georgia doctor told us that from that letter, she has insufficient proof of the diagnosis.  What led the NC doctor to diagnosis her with CFS?  I responded that Jessica was diagnosed over three years ago in Virginia and that she has the record in her file of a positive diagnosis from her Virginia doctor as well as a second confirmation from a rheumatologist at Duke University.  Nope, sorry, not good enough.  

So, I call the doctor in North Carolina.  Proceed to fax a release for Jessie’s blood tests, etc.  Then I cross my fingers, pray, and throw salt over my shoulders that the proof which will be sent to our fabulous Georgia doctor will be sufficient so that the homebound form will be signed and faxed to the school.

If she doesn’t approve the status we have two choices.  Jessie would have to return to school, which we know really isn’t possible at the present moment.  Or her dad and I will have to pull her out, which isn’t that big of a deal except for the fact that I will have to figure out a way for her to get the other semester’s credit through a correspondence school. 

In Virginia we had a fabulous doctor and a terrible school.  In Georgia we have a fabulous school and a terrible doctor.  Does God just want to keep things interesting or what?

NOW I can have lunch.

*On a happy note, I was able to hide away in my studio later and finish a necklace that I was working on. Meditation in any form; it’s a good thing.

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A Very Important Day

Why is it an important day?  I’ll tell you.  Jessie gets her braces off today, YEAH!  Now I may be entirely wrong, but even with the possibility of a headache, muscle-aches, etc., a girl’s gotta feel good about getting the “bane of her existence for the past 2+ years” removed from her mouth!  Our appointment is at 10:20. I shall take pictures to commemorate the event.  

For an update: 

We didn’t see the tutor yesterday because Jes never felt any better.  It was a crappy day in general.  The frustrating thing right now is that nothing is really being done to alleviate the headaches.  I guess hypotension takes precedence?  

I hate all of this WAITING.  We have to wait to see the doctor in North Carolina; then wait to see the cardiologist.  Then we wait to hear results of tests.  We wait to see what happens when they start her out on the lowest dose of a medicine that may not even work once we’ve waited to see if the higher dose works.  We wait to see if the next new medication works.  Then, this is a biggee, we call the doctor and have to WAIT all day by the phone to get a reply so that they can tell us to WAIT.  Why can’t it be like strep or some simple infection?  Why can’t they just figure out what’s going on and give her something to make her feel normal again so that she can get on with her life?  Oh yeah, they’re not God.  Okay, breathe.  I’ve had my rant for this morning.  Three steps forward, two steps back, but we are moving forward, right? 

I’m also still in the midst of getting doctor’s letters coordinated and to the school so that Jessie’s status can be changed to full-time homebound.  Why can’t doctors just drop everything when you call and write the freaking letter and fax it to the freaking school already?  Oh yeah, right,  they’re not God. 

Today is going to be a good day.  I can feel it.

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It’s a bad day today

Jessie reported that she slept badly last night and woke up with a terrible headache.  She has that look that leaves no question in my mind.  The tough part is that she’s scheduled to take a biology test with the tutor this afternoon.  Right now, I don’t see it happening unless the headache lets up a bit.  

I added something new to the slowly growing recipe list this morning.  It’s called Bucatini All’Amatriciana with Spicy Mozzarella and Meatballs.  Translation = Spaghetti and Meatballs.  Once again, I got it from Giada on Food Network.com and adapted it as a gluten-free menu.  It was very good and not at all difficult.  At first I though I couldn’t make it because the meatballs called for breadcrumbs, but I got some gluten-free bread, toasted it up and next thing I new, I had GF breadcrumbs.  Try it if you’re in the mood for some good authentic Italian food.  

*NOTE: The link here provides you with the regular recipe on Food Network.  If you want my gluten-free version, click on my recipe tab.

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School – Continued

I went to wake Jessie up yesterday morning and she said her head hurt.  By the time I was actually able to get her up, she complained of the body aches, headache, etc.  

I spoke with the school and I think we will try to do Spanish 2 and Algebra 2 through the Georgia Virtual School system (a cool thing) and continue with full-time homebound on all of her other subjects.  If everything goes through as planned, it should help out a great deal.  I have to say that the school has been very accommodating so far.  Working with the school in Virginia was like pulling teeth!

The tutor came yesterday and Jes took a lit test.  She will take an Algebra 2 test on Wednesday and another on Thursday.  The girl can self teach, more or less.  I don’t know where this gene came from.  Clearly not from either of her parents! 

I also called the cardiologist to ask exactly what symptoms would be relieved with the Florinef.  I know, duh.  I either didn’t remember this from the visit last week or he didn’t tell me.  In my defense, Jessie has a multitude of symptoms, so I had no idea.  He said the dizziness.  This is going to be difficult to figure out because I think that she had learned to accommodate without even realizing that her symptoms were there, if that makes any sense.  

We have noticed that the color has returned to her face in the past couple of days.  When I say she is pale, I mean PALE, twilight vampire characters pale.  She’s been like that for over 3 years now and no, she’s not a vampire or even a vampire wanna-be.  So we see a difference there.  My very uneducated way of thinking is that if the Florinef is supposed to help her body retain more salt and liquids to increase blood flow and volume, doesn’t it make sense that she would be less pale?  Oh well.  Is it a fluke or related?  Only time will tell, I guess.

Sorry for the rambling and subject changes.  My mind is working that way these days!  Be glad you’re not in my head as it’s a very scary thing.

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School, Homebound, Online. What to do?

Jessie approached me yesterday about pulling out and finishing the year as a homeschooler.  We just had to make the decision to go full-time homebound from intermittent.  The fact is, she simply hasn’t felt well enough to even go to school part time lately.  As a result, she was in danger of compromising the rules of being classified as a homebound student.  Therefore, we needed to change her classification.

I’m surprised that she is asking about homeschooling.  Not that she’s against it or anything.  Homeschool is not new to us.  I homeschooled both kids for a few years in their elementary years.  Our son, Wes, continued and will be finished this spring.  Jessie had a desire go go back in the 5th grade. 

Luckily for everyone involved, Jessie is a good student and has maintained good grades.  But you feel like a little mouse running on one of those wheels constantly trying to catch up.  The situation she’s been in since October is not easy, to say the least.  At the end of the first semester, Jessie had to take incompletes in about 4-5 subjects with 15 days allowed to finish.  If you don’t finish, you get an “F” for the assignment or exam.  That particular week her head was hurting so badly that she really needed to go to the ER.  She had to hold off because if she did go, the medicine would have put her out for a couple of days and she simply didn’t have that much time to finish exams.  The decision to bear the brunt of the headaches so that she could complete the semester was hers.  I watched her, worried, and wanted to take the burden, even tough I couldn’t.  Long story short, it was very stressful and difficult.  It seems as if every semester is the same, trying to catch up.

On the other hand, if she can just hang in there for 3 1/2 more months, she’ll be done.  Not to mention the fact that I don’t even know where to begin looking into getting credit for only one semester of classes with distance learning.  And there is always the hope that she will begin to feel better within the next month and be able to return to school.  

I guess this is just something I will have to look into next week.  Realistically, she will probably have to stick it out with school.  But if there is any way to relieve the added burden…

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