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.
Saturday, August 27, 2011
STILL WAITING
We have not heard the results of the second analysis on the biopsy yet. It will be three weeks on Tuesday since our appointment.
The first couple of weeks went fast. Logan started Kindergarten, and between school and flag football we have been busy and focused on other things besides this crazy histio.
I called the office yesterday and had to leave a message. They said it would be two to three weeks, and I am growing impatient.
She developed a new "lesion" on her chin. This has been the first one on/near her face. And, this morning she woke up with several on her arms and legs. Dr Tamburro said that they shouldn't hurt or itch. But, Lexie scratches them until they bleed. They almost look like pimples or really bad mosquito bites. And, being that it is mosquito season its sometimes hard to differentiate. But, I was at my cousins high school football game last night with Logan, and Adam assured me she was inside last night away from mosquitoes. Which, makes me believe these new "lesions" are from her histio.
And, I'm not sure if its just me, but it seems when she gets more lesions her mood changes. She has been pretty hard to deal with today. She has done nothing but fight with Logan and be destructive since she woke up. She whines and throws herself on the floor for no reason at all. I'm not sure if its just the "terrible twos" but it seems like there is a pattern. And, if I was covered in bumps that seem to itch and hurt, I'd be whiny and mean too.
I wish we would just get the results already! I feel like Children's Hospital is a well known hospital, and I trust their diagnosis. But, I also feel like this is a crazy, scary disorder and a second opinion was a good idea. We just need answers! Either way, whatever the final diagnosis my little girl seems to suffer from this icky disease, disorder, whatever you want to call it. And, enough is enough.
The first couple of weeks went fast. Logan started Kindergarten, and between school and flag football we have been busy and focused on other things besides this crazy histio.
I called the office yesterday and had to leave a message. They said it would be two to three weeks, and I am growing impatient.
She developed a new "lesion" on her chin. This has been the first one on/near her face. And, this morning she woke up with several on her arms and legs. Dr Tamburro said that they shouldn't hurt or itch. But, Lexie scratches them until they bleed. They almost look like pimples or really bad mosquito bites. And, being that it is mosquito season its sometimes hard to differentiate. But, I was at my cousins high school football game last night with Logan, and Adam assured me she was inside last night away from mosquitoes. Which, makes me believe these new "lesions" are from her histio.
And, I'm not sure if its just me, but it seems when she gets more lesions her mood changes. She has been pretty hard to deal with today. She has done nothing but fight with Logan and be destructive since she woke up. She whines and throws herself on the floor for no reason at all. I'm not sure if its just the "terrible twos" but it seems like there is a pattern. And, if I was covered in bumps that seem to itch and hurt, I'd be whiny and mean too.
I wish we would just get the results already! I feel like Children's Hospital is a well known hospital, and I trust their diagnosis. But, I also feel like this is a crazy, scary disorder and a second opinion was a good idea. We just need answers! Either way, whatever the final diagnosis my little girl seems to suffer from this icky disease, disorder, whatever you want to call it. And, enough is enough.
Wednesday, August 10, 2011
Waiting Part 2
Yesterday we had our 1st visit to UH in Cleveland. I did not realize they are so connected with Rainbow Babies until we got there.
Lexie's Dr, Dr Tamborro, is very nice. She spent a lot of time with us and Lexie. I think she checked over every inch of skin Lexie has. Including, taking the time to examine her scalp thoroughly as well.
Dr Tamborro had three interns working with her as well. They were all in the room as well.
I was hoping to get answers yesterday. But, instead Dr Tamburro requested that we sign a release for them to do their own tests on Lexie's biopsy. And, explained Childrens Hospital should still have her skin blocks.
She explained than the Non-Langerhans Cell Histiocytosis is a very tough diagnosis. And, she has all the Drs we need at Rainbow to take care of her if that is what she has. But, she would like them to confirm the diagnosis in their own lab first.
Part of me wants to hope Childrens was wrong. Maybe they misdiagnosed. Maybe they saw the skin wrong. Maybe the lighting was off. All these thoughts have crossed my mind. And, yes I do hope they were wrong. I wish my daughter did not have this horrible diagnosis.
But, the other part of me, wants to let those thoughts pass as quickly as the come, fearing that I will have to go through the realization process all over again in 2-3 weeks when we have the results again.
Dr Tamburro also explained she hoped the skin blocks would be enough. If not, Lexie may have to undergo another biopsy. Which, in the grand scheme of things is small. But, no one wants their baby to be put under and chopped on. I am praying they have what they need to do their own testing.
So, here we are again, waiting. Hopeful for good news, but knowing this might be even more of a confirmation that she has it.
Lexie's Dr, Dr Tamborro, is very nice. She spent a lot of time with us and Lexie. I think she checked over every inch of skin Lexie has. Including, taking the time to examine her scalp thoroughly as well.
Dr Tamborro had three interns working with her as well. They were all in the room as well.
I was hoping to get answers yesterday. But, instead Dr Tamburro requested that we sign a release for them to do their own tests on Lexie's biopsy. And, explained Childrens Hospital should still have her skin blocks.
She explained than the Non-Langerhans Cell Histiocytosis is a very tough diagnosis. And, she has all the Drs we need at Rainbow to take care of her if that is what she has. But, she would like them to confirm the diagnosis in their own lab first.
Part of me wants to hope Childrens was wrong. Maybe they misdiagnosed. Maybe they saw the skin wrong. Maybe the lighting was off. All these thoughts have crossed my mind. And, yes I do hope they were wrong. I wish my daughter did not have this horrible diagnosis.
But, the other part of me, wants to let those thoughts pass as quickly as the come, fearing that I will have to go through the realization process all over again in 2-3 weeks when we have the results again.
Dr Tamburro also explained she hoped the skin blocks would be enough. If not, Lexie may have to undergo another biopsy. Which, in the grand scheme of things is small. But, no one wants their baby to be put under and chopped on. I am praying they have what they need to do their own testing.
So, here we are again, waiting. Hopeful for good news, but knowing this might be even more of a confirmation that she has it.
Monday, August 8, 2011
REALITY
Reality-
-My two year old daughter that looks as healthy as can be, has a rare disorder called Non-Langerhans Cell Histiocytosis.
-No matter how many countless hours I spend trying to learn as much as I can I am not a Doctor.
-I am not GOD. I do not know what the future holds. And, to tell you the truth, I'm scared to know.
-I have no idea if this is the extent of what we'll experience. I hope the skin lesions are the most she ever will experience, or if we will (God forbid) ever have to experience it anywhere else in her body.
-I pray so hard about this I lose sleep over it.
-I DO NOT WANT HER TO HAVE THIS, BUT SHE DOES.
-My two year old daughter that looks as healthy as can be, has a rare disorder called Non-Langerhans Cell Histiocytosis.
-No matter how many countless hours I spend trying to learn as much as I can I am not a Doctor.
-I am not GOD. I do not know what the future holds. And, to tell you the truth, I'm scared to know.
-I have no idea if this is the extent of what we'll experience. I hope the skin lesions are the most she ever will experience, or if we will (God forbid) ever have to experience it anywhere else in her body.
-I pray so hard about this I lose sleep over it.
-I DO NOT WANT HER TO HAVE THIS, BUT SHE DOES.
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