Monday, April 2, 2007

The News About Kylee...

About a month ago I took K-girl for lab work because she was sleeping excessively. (And when I say excessively, the breaking point for the lab work was her going to bed at 10pm one Monday night and waking up 2:30pm the next day.) Since I had recently been diagnosed with Mono... her Dr. thought it best to have her tested also. Since she was having blood drawn I finally committed to having her tested for Lyme Disease also. She has been through the mill with symptoms- the test was inevitable. My close friends here in Pittsburgh started calling me well over a year ago when she was in and out of the ER's with seizures asking when we were going to have her tested for L.D. I really believe the only reason she wasn't tested then was because emotionally... I wasn't strong enough. (Which is NOT a good reason at all.) So- I pulled my act together and a few weeks back, had her tested. The mono test came back positive in a week... and just last week, her Lyme test came back positive.

Here's the thing about a positive Lyme test for a toddler... or for any child under 18 for that matter... non pediatric Lyme specialists (ie her regular doctor) REFUSE to treat her! Her Dr. received the test results and didn't know what to do with them, or her, so she called Children's Hospital, Infectious Disease. (In the world of Lyme treatment... this is a BIG MISTAKE) Infectious Disease confirmed the results as Lyme Positive and said this, "Two weeks on ammoxicillian will clear her up. No need for a retest." Meanwhile, K-girl had been on 8-9 two week doses of antibiotics over the last two years (for ear infections, bronchitis, lingering infections they couldn't place...) which never cured her of Lyme before this test was done.

I didn't have much faith this treatment would do the trick.

So we called my Lyme Dr. for a referral and low and behold... the closest, BUT BEST, treating physician for K-girl is in New Haven, CT.

CONNECTICUT????????


So this weekend has been spent working on logistics... should we drive or fly? Who will care for the boys? Should Paul come with us or stay at work? And all of this had to be decided this weekend because her appt is in 10 days. Because her new Dr. (Dr Jones) doesn't want her medicine to lapse, they squeezed her in for a 6pm appointment on April 12th. (VERY FORTUNATE as they initially wanted to schedule her at the end of June.)


THE BAD NEWS- (aside from the positive Lyme diagnosis of course) Unlike my Lyme Dr. who takes my insurance for the office visit leaving my copay at 20$... Dr. Jones does not receive insurance and the office visit is $250.00. For ALL Lyme patients, a visit to the office is required MONTHLY! Between K-girl and me... our copays for the Dr. appointments, the costs to travel monthly, and our medicine, we are the difference of a mortgage here in our current city vs. a mortgage in the North Hills where we want to live so we can be near our church.

THE GOOD NEWS- She is young. Her immune system hasn't been overhauled with preservatives, heavy metals, nitrates, msg or any other of the sort. By nature her body is designed to fight off infection. I'm believing her treatment will be effective and fast. I don't want her on longterm antibiotics. And Paul and I agree, that we both disagree with Infectious Disease when they said, NO NEED TO RETEST. Our theory will be to test and retest often. As soon as we can see she is rid of the Lyme Bacteria and able to be off the antibiotics...we want her off.

PLEASE pray for this process. It's unfortunate that we are having to endure this HOWEVER, it is treatable. I continue to remind myself that though inconvenient, uncomfortable and financially burdensome... the reality is... IT'S TREATABLE!! For that we are completely grateful.

Pray for quick resolution, health, wholeness, and restoration. We are hoping to be a fully restored, healthy family once again.

Thanks for coming along side us.
We couldn't do it without each of you.


2 comments:

Tara said...

I'm sorry to hear this news, Chelle...you will all be in my prayers and I hope for a quick and complete recovery for Kylee!

Cheryl said...

Praying for you and your family, my friend. Thought the lyrics from an old familiar song might encourage your heart.

Be not dismayed, though it seems like the storms will never end.
Be not afraid, when it seems like you haven't got a friend.
The storms are raging, you don't have to run and hide.
The Lord is faithful to heal the lonely heart inside.

PEACE, BE STILL
The Father loves you.
PEACE, BE STILL
The Father loves you.
And no matter where you are
Or where you've been,
I am sure He wants you to know
He won't let go

Be not dismayed, though it seems like the hurt will never end.
Be still and know the Father will never let you go.
The pain is raging, you don't have to run and hide.
The Lord is faithful to heal the hurting heart inside.

PEACE, BE STILL
The Father loves you.
PEACE, BE STILL
The Father loves you.
And no matter where you are
Or where you've been,
I am sure He wants you to know
He won't let go.

And no matter where you are
Or where you've been,
I am sure He wants you to know
He won't let go.

Love ya, friend!