Here is the address of my other blog for those of you interested...
http://little-did-i-know.blogspot.com
Friday, September 28, 2007
Wednesday, September 26, 2007
Blood Work part 2
Well, the Drs called. Her white count is still "trending down" so they are going to switch her one med that was changed about a year ago. She said nothing to worry about, they're pretty sure that's what it is that is causing the low level. OK. She is talking with the team over the next week and will let me know what the decision is when it's made. (As to what med, etc I assume.) So, good news, I guess??? :)
Tuesday, September 25, 2007
Blood Work
Well, my daughter and I made it in to the outpatient center today for her new blood work. They said that the tests should be done and the results faxed to our specialist in 2 hours, which means they should have the results tomorrow. Hopefully they will then call me to let me know what the results were, and what that means, if the white count is low again. If I don't hear from them by early afternoon I will call myself. Here's hoping....
Monday, September 24, 2007
Our First
When my daughter and I went to her 3 month routine appt in August, we were told that in June her white blood cell count was low. Nothing to worry about, they will just watch it. I didn't think much of it. At all.
Then one month later, last week, the day before my daughter's adoption, they called. They said that her white blood count was low again, and no rush, but they needed me to take her to our hospital locally to get new blood work done. They would call and fax in the order, and I was to make sure to fill out a release so that they would then fax them the results. I was a bit taken aback, and didn't know what to say other than, ok.
I wish I had asked questions. I wish I knew what this meant. Or could mean. I could call back. I could. I'm chicken. She said that she would call and let me know when the order was there and ready. She called Friday night. I'm taking my daughter tomorrow.
I tried looking on the internet for "clues" as to what a low white blood count would mean, could mean. All I really found was one site which said, "a person with HIV having a low blood count could mean HIV infection or another serious illness." Gulp. I started thinking, maybe God wanted this "secret" of her status "out" so that I would have a support network during this time??? I don't know. I've only told a couple people about the blood count. Maybe it's nothing. Maybe it's going to mean a med change, no big deal. Maybe. But maybe not. I hope the results are sent quickly and pray to hear back quickly. I pray.
Then one month later, last week, the day before my daughter's adoption, they called. They said that her white blood count was low again, and no rush, but they needed me to take her to our hospital locally to get new blood work done. They would call and fax in the order, and I was to make sure to fill out a release so that they would then fax them the results. I was a bit taken aback, and didn't know what to say other than, ok.
I wish I had asked questions. I wish I knew what this meant. Or could mean. I could call back. I could. I'm chicken. She said that she would call and let me know when the order was there and ready. She called Friday night. I'm taking my daughter tomorrow.
I tried looking on the internet for "clues" as to what a low white blood count would mean, could mean. All I really found was one site which said, "a person with HIV having a low blood count could mean HIV infection or another serious illness." Gulp. I started thinking, maybe God wanted this "secret" of her status "out" so that I would have a support network during this time??? I don't know. I've only told a couple people about the blood count. Maybe it's nothing. Maybe it's going to mean a med change, no big deal. Maybe. But maybe not. I hope the results are sent quickly and pray to hear back quickly. I pray.
Saturday, September 22, 2007
Legal Family
We are now legally viewed a forever family! Thursday was the big day, an exciting day, a glorious day. Soon I will share with you the address of my "other" blog, my more public blog, and I will share this address on that website. My two "worlds" will merge.
A lot has happened in the last couple weeks.
About two months ago I spoke with our school nurse to inform her of my decision to not keep her status a secret. She thought that since I worked in the district I should go to each of our 3 buildings to let them know personally so that they were not talking behind my back, could ask questions of me, I could educate them more than they already are, and it was just there and no big deal. It took me a while to wrap my mind around this information/idea. I was not sure this was the way I wanted to go at all. But then, I guess, if the information is going to be "out there" why not put it on the table and talk about it instead of hiding away???
Since school began, and since I learned of her date of adoption, I have been asking and asking both the school nurse and our Director of Special Ed when this "disclosure discussion" would take place at school. I was going out of my mind with worry, anticipation, fear, questioning, etc. Each time I asked, I was basically brushed aside. I kept telling them that the best day to do it would be Sept 19, a half day for students, half institute day for staff. That way we could go building to building with no time for gossip in between. At the beginning of school the nurse said she didn't want me to go with her after all. Ok, whatever, that's fine. I finally emailed both of them on Sept. 17 since I still had heard nothing for sure. I heard back that they would like to come talk to me after school. After school they and the social worker showed up. We sat down and the Dir proceeded to tell me that although I wanted this to happen they had contacted the school attourney and they legally couldn't since it would be like the district was giving out info on a single student. The nurse just sat there. I said that this wasn't my idea, she had asked to do this. She said that no, it was only her idea to not have me go with her. What???? For two months I worked on wrapping my mind around what it was that she wanted to do in the district and deciding that she was probably right and it was the best way. Now she is denying it was even her idea? I was floored. I left with lots on my mind.
The next day I emailed the Dir how upset I was at the meeting and how this had not been my idea. I couldn't believe it was now portrayed as me wanting this and sorry, two days before it was to happen, it couldn't. The fact we weren't going to do it wasn't even the point, although my emotional state was shaky enough preparing for this and then having it blown to bits. I then asked in the email if I could do it myself. I certainly didn't want to walk into a room at work one day and have all conversation end. If they knew upfront, hopefully that wouldn't happen. That day I was called to the Superintendent's with the Dir. of Special Ed. Same thing. I could not do that unless it was on my time. LIke they would come on their own time. That's crazy.
What I want to know is, if a parent of a child with Autism, Cancer, even HIV called the school to say they would like to meet with staff to inform them of their child and educate them on their "condition", wouldn't they be able to? I'm sure they would. Think they have in the past. What makes this different? That I work in this district. Wow.
I passed out and mailed out letters revealing my daughter's disclosure on Friday. I am very proud of my letter. It put things in a very positive light and shared the facts that they have never been at risk, and aren't at risk, I told of her wish to be, I gave them two pages of basic info, one of which was just questions and answers: Can I get HIV from a mosquito bite?, etc. At school I had given out 12 of these letters to close friends/co-workers. I had many come to me crying. A response I did not expect. No negative reactions. I love the love that has already poored from these people.
Today I went to a disclosure "workshop" in Chicago. It was myself, one other adoptive parent, two social workers and the presenter. I like the presenter a lot. But the whole workshop seemed to be based on secrets. Secrets of who to tell, who not to tell, how to get your child not to tell. The other parent didn't agree with me at all that it just shouldn't be a secret. I'm not saying we're going out and advertising in the newspaper, but why the secrecy? If we want people educated and told there is nothing to fear, why hide. The presenter was open to what I was saying. Both shared experiences of mentioning the word HIV and all the negative ideas that are out there that aren't even true. I said, I don't expect to educate the world, but how on earth do we expect people to learn the truth if we continue hiding our HIV children away and keeping them a secret. Not sharing with our friends and family the truth of the virus so that they can be educated and educate others? That makes no sense. I want a brighter future than that for my daughter and others battling this. It feels like there is not much difference over the last 20 years in how this is viewed. How does that happen? By NOT talking. We need people willing to stand for truth in our country, our world. It's ok to see little children in Africa with HIV and want to help, but not in our own country, that makes no sense.
A lot has happened in the last couple weeks.
About two months ago I spoke with our school nurse to inform her of my decision to not keep her status a secret. She thought that since I worked in the district I should go to each of our 3 buildings to let them know personally so that they were not talking behind my back, could ask questions of me, I could educate them more than they already are, and it was just there and no big deal. It took me a while to wrap my mind around this information/idea. I was not sure this was the way I wanted to go at all. But then, I guess, if the information is going to be "out there" why not put it on the table and talk about it instead of hiding away???
Since school began, and since I learned of her date of adoption, I have been asking and asking both the school nurse and our Director of Special Ed when this "disclosure discussion" would take place at school. I was going out of my mind with worry, anticipation, fear, questioning, etc. Each time I asked, I was basically brushed aside. I kept telling them that the best day to do it would be Sept 19, a half day for students, half institute day for staff. That way we could go building to building with no time for gossip in between. At the beginning of school the nurse said she didn't want me to go with her after all. Ok, whatever, that's fine. I finally emailed both of them on Sept. 17 since I still had heard nothing for sure. I heard back that they would like to come talk to me after school. After school they and the social worker showed up. We sat down and the Dir proceeded to tell me that although I wanted this to happen they had contacted the school attourney and they legally couldn't since it would be like the district was giving out info on a single student. The nurse just sat there. I said that this wasn't my idea, she had asked to do this. She said that no, it was only her idea to not have me go with her. What???? For two months I worked on wrapping my mind around what it was that she wanted to do in the district and deciding that she was probably right and it was the best way. Now she is denying it was even her idea? I was floored. I left with lots on my mind.
The next day I emailed the Dir how upset I was at the meeting and how this had not been my idea. I couldn't believe it was now portrayed as me wanting this and sorry, two days before it was to happen, it couldn't. The fact we weren't going to do it wasn't even the point, although my emotional state was shaky enough preparing for this and then having it blown to bits. I then asked in the email if I could do it myself. I certainly didn't want to walk into a room at work one day and have all conversation end. If they knew upfront, hopefully that wouldn't happen. That day I was called to the Superintendent's with the Dir. of Special Ed. Same thing. I could not do that unless it was on my time. LIke they would come on their own time. That's crazy.
What I want to know is, if a parent of a child with Autism, Cancer, even HIV called the school to say they would like to meet with staff to inform them of their child and educate them on their "condition", wouldn't they be able to? I'm sure they would. Think they have in the past. What makes this different? That I work in this district. Wow.
I passed out and mailed out letters revealing my daughter's disclosure on Friday. I am very proud of my letter. It put things in a very positive light and shared the facts that they have never been at risk, and aren't at risk, I told of her wish to be, I gave them two pages of basic info, one of which was just questions and answers: Can I get HIV from a mosquito bite?, etc. At school I had given out 12 of these letters to close friends/co-workers. I had many come to me crying. A response I did not expect. No negative reactions. I love the love that has already poored from these people.
Today I went to a disclosure "workshop" in Chicago. It was myself, one other adoptive parent, two social workers and the presenter. I like the presenter a lot. But the whole workshop seemed to be based on secrets. Secrets of who to tell, who not to tell, how to get your child not to tell. The other parent didn't agree with me at all that it just shouldn't be a secret. I'm not saying we're going out and advertising in the newspaper, but why the secrecy? If we want people educated and told there is nothing to fear, why hide. The presenter was open to what I was saying. Both shared experiences of mentioning the word HIV and all the negative ideas that are out there that aren't even true. I said, I don't expect to educate the world, but how on earth do we expect people to learn the truth if we continue hiding our HIV children away and keeping them a secret. Not sharing with our friends and family the truth of the virus so that they can be educated and educate others? That makes no sense. I want a brighter future than that for my daughter and others battling this. It feels like there is not much difference over the last 20 years in how this is viewed. How does that happen? By NOT talking. We need people willing to stand for truth in our country, our world. It's ok to see little children in Africa with HIV and want to help, but not in our own country, that makes no sense.
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