Not my will, but your's be done.

Monday, August 29, 2011

Q and A:HIV

The Q and A I mentioned a while back has been a long time coming, eh?  You probably thought that I had forgetten all together.  Once I started writing down all the questions that were asked by various readers, I realized that there were so many that I should break it up in to two different posts.  This post will just be questions related to HIV.  The next post, which will hopefully be published tomorrow, will address homeschooling and other miscellaneous questions.

Has HIV been easier or harder to manage than you anticipated?
Overall, I can definitely say that it has been easier.  Before we brought Alik and Josslyn home I had done alot of research and talking with other parents who have adopted children with HIV.  I was very familiar with what the daily routine looked like, in regards to having a child with HIV.  That part has pretty much been exactly like I anticipated.  The kids take medicine two times a day, and besides that, HIV isn't a issue in our daily life.  Ray and Danil both take daily medication too, and have to see doctors for their conditions, so
Alik and Josslyn's daily medication and 4 time a year doctor visit are no biggie at all.
Besides daily medication, the only other major difference that HIV has made in our life is that the children see a retrovirology specialist at Texas Children's Hospital.  Now we are at the point of just going to TCH every three months to have their bloodwork done.  So honestly, HIV is a super manageable "special need".  I do not at all consider Aik and Josslyn speical needs.  I DO however consider waiting orphans with HIV to be "special needs" just because of what the future holds for them if not adopted. 

Did you incur any out-of-pocket medical expenses, related to HIV, when you first got home with the kids?
The most major out-of-pocket medical expense we have had is meeting Alik, Danil, and Josslyn's insurance deductable.  This isn't a HIV related expense, because at TCH the retrovirology department(the department that deals with children with HIV), is connected to the department that deals with children who have been adopted internationally.  Whether or not the kids had HIV they would have gone to the same doctor, just to get a full check from people who deal daily with children who have been adopted internationally and the various issue that they might be dealing with(parasites, malnourishment, developmental delays, etc).  The only out-of-pocket expenses we have related to HIV are co-pays for the 4 time a year doctor visit and the kid's medication.  It has actually been much more affordable than I anticipated.

How did you family/friends react to the children's HIV status? 
We have been super blessed by our family being so supportive.  Overall, our family had a very positive reaction to Alik and Josslyn's HIV status.  A few close family members knew that adding a child with HIV to our adoption was something that we were praying about.  Those that didn't know(which was the majority of our family, handled the HIV part very well.  The main concern of the majority of our family was us being able to handle the addition of 3 more children at once.

We have had a few of our friends who had concerns, but they presented them with excellent attitudes, so that we could address their fears and answer their questions.  The concerns came from friends who had very young children and were not very familiar with HIV.  We would have been in that exact same catagory a year ago, if a close friend or family member of ours would have announced they were adopting a child with HIV.  Like I have mentioned before, until God called us to adopt a child with HIV, we were VERY uneducated about it.  I can honestly say that those in our life that did have concerns handled them much better than I probably would have if the rolls had been reversed.

Of course we had some aquaintances that did not take our news very well.  It was mostly people in our church that like to get hyped of over anything and everything and we were just the next bandwagon to jump on.  Josh and I fully expected that, and while our feelings were hurt by some of the comments made about our children, it was an opportunity for growth and to show grace....even though I wanted to give a few folks a piece of my mind. 

How open have you been about Alik and Josslyn's HIV status?  Is there anyone you wish you could un-tell?
We have been open about their HIV status.  We had many reasons for being open, but the deciding factor was, that after praying about it, that is what God gave us a peace about.  We knew that by choosing to be open, their would be bumps in the road, but Josh and I have both learned that obeying the Lord is always the best choice, even when it isn't the easiest choice. 
While we are "open" with the kids HIV status, we don't use it to lable them.  I talk very openly on my blog about all the different aspects of having a child with HIV, but I don't announce it to everyone we meet.  In day to day life I rarely bring up that the children have HIV.  I am totally comfortable with talking about it with people who know and have questions(I actually LIKE answering any questions related to HIV or our adoption), but I don't introduce Alik and Josslyn as being adopted and having HIV.  They are not defined by HIV or by the fact that they are adopted.  While both of those topics are open topics in our home and in our lives, they aren't defining characteristics of our children.  To me it would be like introducing Luke by saying, "Hi, this is my son, Luke.  My husband adopted him several years ago.  He is 8 and he has some learning difficulties, especially reading related, and also some attention deficit difficulties."  That sort of introduction would sound down right ridiculous.  Luke is not defined by any of those things, and neither are Alik and Josslyn.

Even though we have faced some negativity, there isn't anyone I wish I could "un-tell".

What precautions do you take, regarding Alik and Josslyn's HIV, especially since you have young children in your home?

Kidding.  Sorta.  Honestly though, we don't take any sort of special precautions.  I do pretty much all the cleaning and bandaging of real boo boos, but that was how things already worked around here.  I have never worn gloves while dealing with one of Alik or Josslyn's bloody boo boos.  Neither of them have had a gushing bleeding wound while I have had an open wound on my hand, so there has never been a need for gloves.  Our kids bathe together.  They share towels and rags.  We try to not share cups, but that is to prevent transmission of colds and not at all HIV related.  At times we DO share cups, but in general everyone has their own cup.  Also, Danil and Joss are MAJOR backwashers, so I would not subject anyone to having to share a cup with them....and their last meal.  Another thing we discourage sharing is toothbrushes.  My older 5 don't share at all.  Kellen tends to be the toothbrush thief though.  There is a very minimal chance that HIV can be transmitted via sharing a toothbrush.  HIV is a fragile virus and dies upon contact with the air, so the toothbrush(with blood on it) would have to go from one mouth to the other IMMEDIATELY, and even then the chance of transmission is VERY VERY minimal.  The reason we discourage sharing toothbrushes is more germ and cold related, than HIV related.  So, the only new precaution that we have instated in our home, since bringing Alik and Josslyn home, is the children are no longer allowed to share needles when they shoot up their heroin. *wink*

What does Alik and Josslyn's medication routine look like?
They take medicine twice a day. 7:30am and 7:30pm.  They take it great, so it is no big deal at all, just part of our routine.  Ray and Danil also take daily medication, once a day.  So in the morning all four of them take their meds at the same time.  In the evening, just Alik and Joss take theirs. 

So, twice a day meds and visits to the doctor 4 times a year for bloodwork is pretty much the extent to how HIV has affected our daily life(is it affect, or effect??  I can never remember...).  We have had some effects(we'll just use both so I know that I'm getting it right at least once!) from negative reactions from people at our old church, but those truly turned out to be opportunities for spiritual growth, and in retrospect I wouldn't change a single negative thing we've dealt with thus far.  God also used some of the naysayers to give us a nudge to move in a direction that God had been preparing us for over the past several years.  God is doing exciting things in our life, when we remember to step back, let go, and let Him work.

They next Q and A post should publish tomorrow, so if you have any more questions you still have time to slip 'em in!

Have a great school and/or work week!


Cara said...

Thank you for the Q& A! I've really learned a lot through your family's blog and your kids are precious.

melanie said...

This was really interesting to read! Had to giggle about the sharing of needles! :)

(and btw ... you used affect/effect correctly!) ;)

I very much enjoyed seeing y'all this weekend! I am absolutely amazed at Alik's English! I think I followed him around like this: :-O the entire time!

Elaina Lawrence said...

Thank you so much. We need to debunk the 1980's stereotypes of HIV. I was sharing last week with my two teenaged boys. My oldest brought it up in his Health class the following day. He said the teacher decided to change her lesson plans and gave them a lesson on HIV, how it's transmitted, how it's managed, etc. He said 99.9 % (I guess he's the .1%) of the students walked away with the correct information.
Praise God for our children.

Jennifer Douga said...

Very informative post as always. Also, you had me cracking up about the needles. :)

Micah said...

Baaaahahahahaha heroin. Bob even laughed out loud.

Molly said...

I love you for this post, especially the shooting up comment.

Chantelle said...

Hello. I couldn't find a way to contact you through your blog. Could you please email me at Contact-us@PositivelyAdopted(dot)com about possibly writing about your family for our site. Thanks!