Thursday, July 15, 2010


Bailey and I saw Dr. Weiss in Arvada yesterday and I have to say....I was impressed from the moment I shook her hand. She noticed the bracelet on my arm, and asked about it. I told her it was for Neurofibromatosis Awareness. She was impressed with the fact we are a family who 'THRIVES with NEUROFIBROMATOSIS'.

Our visit consisted of the doctor taking a full history and asking many many questions about what Bailey is experiencing. (The brain tumor, the Cushings disorder, hearing loss, vision history, depression, weight gain) I felt both bad and good.....Bad because we had this huge list of medical issues, and good because this doctor was listening to me! She wasn't rushing me or making feel like I was just one of many.

Bailey had a full physical (head to toe)--and the doctor noted some concerns. First she feels that Bailey may have an estrogen deficiancy. I won't go into detail, as to respect my daughter, but there are definant signs that go along with a hormone imbalance. Next, she agrees with the diagnoses of Cushing's, although this has yet to be officially determined, she has a tenative diagnoses. Another thing... Bailey has experienced significant weight gain.....It is yet to be determined, if this is because of Cushing's or because of the hormone imbalance.

We left feeling really good. The dr. said she would call us back with names and numbers of all the drs we needed to be in contact with, and I was shocked when she actually called lastnight, ready to give me this list.

Another call back this morning and I was spinning with all this information that was being dropped in my lap. A few deep breaths and some notebook paper to organize my thoughts, and I had scheduled the Neurologist, Neurosurgeon and Endocrinologist, all for next week. The NF clinic evern called me, and we will be visiting them in September, after Bailey has healed up some from the surgery.

So after the appnts were set up, I got another call telling me that Bailey's insurance was not "active" yet. So all the appnts that were scheduled would have to be "out of pocket". NOT GOOD NEWS. :(

I spent another few hours, digging and calling so many people, trying to find out how we could make the insurance kick in, by the time we had to go to our appnts. I was tense and frustrated because I was getting no where!

One last call to make, I kept my tone sweet, but inside I was ready to break down. The lady on the other end was patiently listening to everything I had to say, even breaking in with sighs of sympathy.

She told me the same thing the others told me, except that she would make sure to look into it, and call me back........The call came just before closing for them, and she said Bailey should have her medical by tomorrow, and that SHE would call as soon as it was active.

A very up and down day today, that ended with a high!

Next week will prove to be one of our busiest weeks medically, that we have ever had. I am so happy to be on this road-though. Bailey is just going with the flow, and pretty mellow about things. I know she thinks about her brain tumor...and even gets scared about the surgery.....but she is so brave, and knows all that is involved with this.

Thank you all for the prayers and well wishes---it really means a lot to us, to have people thinking of Bailey....we are truly lucky to have so many loving and caring friends.


1 comment:

  1. I sure hope that that kicks in ASAP.
    I am glad to hear these new doctors are doing a total head to toe everything on bailey, always a good sign of people who care and are not just doing it all to make money from it.

    you are an amazing person Kristi, and Bailey is too. Both strong in many many ways.

    Thinking and praying for you always.

    Hugs and love