I received a call from Dr Tamburro herself today. (Lexies doctor from Rainbow)
She called to say Lexie has "Papular Urticura". Which is basically a hypersensitivity to bug bites, eczema, or medications.
It can easily be treated with antihistamines and she will eventually outgrow her sensitivity.
We are ecstatic to hear this!!!!
Now, she will start a new medication tomorrow, and we will see her regular dermatologist next week.
Hopefully this will be the end of this crazy adventure!!! And, hopefully relief for Miss Lexie's poor little lesion covered body!
Tuesday, September 20, 2011
Friday, September 16, 2011
Sometimes Prayers Get Answered Before Questions Do......
Today I received a call from Dr Tamburros assistant.
She was calling to say that Dr Tamburro met with the pathologist yesterday, and after looking at the first biopsy, they do not think its Histio!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
They are still analyzing the second biopsy, and hope to call us Tuesday with a new diagnosis.
Words cannot say how relieved I am!
There is still the question of what is this crazy thing she does have, but we are hoping for the best outcome for our Lexie. Hopefully the diagnosis will be something easily treated, or better yet curable.
Keep us in your prayers as we continue our journey. And, one thing is for sure, this experience has put so many things into perspective.
She was calling to say that Dr Tamburro met with the pathologist yesterday, and after looking at the first biopsy, they do not think its Histio!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
They are still analyzing the second biopsy, and hope to call us Tuesday with a new diagnosis.
Words cannot say how relieved I am!
There is still the question of what is this crazy thing she does have, but we are hoping for the best outcome for our Lexie. Hopefully the diagnosis will be something easily treated, or better yet curable.
Keep us in your prayers as we continue our journey. And, one thing is for sure, this experience has put so many things into perspective.
Tuesday, September 13, 2011
CIRCLES
On the way to Rainbow Babies this morning my mind was going in circles. Would we get the results back? Would they be the same that Childrens diagnosed? Maybe something not as bad, maybe something worse. Either way I was ready to heat whatever it may be.
But, we have no answers. Dr Tamburro explained that the pathologist wanted to do more slides on Lexie's skin block, but that he needed more skin to work with. And, being that she has a fresh break out right now, it was the prime time for another biopsy.
I did not want to put her through another one, but histiocytosis is such a rare, crazy, disorder and Rainbow Babies wants to be completely sure that's what we are dealing with. And, so do we.
It would be one thing if these lesions were cosmetic, but its not an issue of that at all. Its an issue of a two year old girl that scratches her skin raw and waits patiently as I inspect her skin on a twice daily basis looking for new lesions to apply cream to. Sometimes she wakes up and I find blood on her blanket from where she has scratched herself bloody.
We are putting our trust in Rainbow Babies. Some may judge that we should not have put her through a second biopsy, but truth is we'd rather be completely sure of what she has so that we can give her the most appropriate treatment. And, if it is in fact histio, it can affect her organs. And, that's not something we can afford to be in the dark about.
So, right now we are going in circles. But, I'd rather be going in circles than in the wrong direction.
Gotta go snuggle by baby,who in case you are wondering, seems to feel fine after her biopsy. She complained a little about the pain, but Childrens Tylenol works wonders! And, mommy's hugs work even better!
But, we have no answers. Dr Tamburro explained that the pathologist wanted to do more slides on Lexie's skin block, but that he needed more skin to work with. And, being that she has a fresh break out right now, it was the prime time for another biopsy.
I did not want to put her through another one, but histiocytosis is such a rare, crazy, disorder and Rainbow Babies wants to be completely sure that's what we are dealing with. And, so do we.
It would be one thing if these lesions were cosmetic, but its not an issue of that at all. Its an issue of a two year old girl that scratches her skin raw and waits patiently as I inspect her skin on a twice daily basis looking for new lesions to apply cream to. Sometimes she wakes up and I find blood on her blanket from where she has scratched herself bloody.
We are putting our trust in Rainbow Babies. Some may judge that we should not have put her through a second biopsy, but truth is we'd rather be completely sure of what she has so that we can give her the most appropriate treatment. And, if it is in fact histio, it can affect her organs. And, that's not something we can afford to be in the dark about.
So, right now we are going in circles. But, I'd rather be going in circles than in the wrong direction.
Gotta go snuggle by baby,who in case you are wondering, seems to feel fine after her biopsy. She complained a little about the pain, but Childrens Tylenol works wonders! And, mommy's hugs work even better!
Monday, September 12, 2011
9/12/11
I'm overdue for a post.
We still have yet to hear the results from Rainbow Babies Evaluation. They did contact me to say that it could be an extra couple of weeks, because they want to run extra tests on the sample. And, they scheduled a follow up appointment, its actually tomorrow.
I am hoping when we go they will have answers for us.
The past few weeks Alexis has had many new breakouts. She now has a new batch of lesions on her back, as well as three on her face. These are two places she never really had had them before.
She also had been ill this past weekend. Anytime she gets sick (diarrhea and vomiting) I get nervous. I'm sure its just a bug, or something she ate. But, I cant help but think that it may be an affect of the histio. Now that I know this crazy disease exists, it consumes my mind way more than I should allow it to. But, this is my daughter, my beautiful precious daughter. And, anything that can put her happiness and health in jeopardy is my concern. That's a mommy's job.
So, here I sit typing. I'm a crazy, worried mama. I want tomorrow to come so that hopefully we get answers and direction. But, I dread it all in the same.
We still have yet to hear the results from Rainbow Babies Evaluation. They did contact me to say that it could be an extra couple of weeks, because they want to run extra tests on the sample. And, they scheduled a follow up appointment, its actually tomorrow.
I am hoping when we go they will have answers for us.
The past few weeks Alexis has had many new breakouts. She now has a new batch of lesions on her back, as well as three on her face. These are two places she never really had had them before.
She also had been ill this past weekend. Anytime she gets sick (diarrhea and vomiting) I get nervous. I'm sure its just a bug, or something she ate. But, I cant help but think that it may be an affect of the histio. Now that I know this crazy disease exists, it consumes my mind way more than I should allow it to. But, this is my daughter, my beautiful precious daughter. And, anything that can put her happiness and health in jeopardy is my concern. That's a mommy's job.
So, here I sit typing. I'm a crazy, worried mama. I want tomorrow to come so that hopefully we get answers and direction. But, I dread it all in the same.
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