HIV Q & A

I posted in several places asking what questions were out there about HIV and adopting HIV kiddos. I got some really great questions and I am going to attempt to answer them:). 

1. What about boo- boos and blood? Do your kids know what to do when they bleed? Are there any risks if my kid plays with a kiddo who is HIV positive?

HIV has never been spread through this type of contact. Bleeding boo-boos are not scary. HIV is killed quickly by contact with air. Any spilled body fluid has to get into the bloodstream to infect someone- which is hard to do. Putting a bandaid happens the same way it does at your house. Intact skin is the best defense against any virus.  We teach all of our kids not to touch other people's blood. That is the medical part of me though- it has nothing to do with HIV. I don't want my kids touching anyone's body fluids- that is just gross and unnecessary. They know to come get a grown up if they see blood. There are no risks for children playing together. They can pass on the flu or colds- but not HIV. 

2. If I adopt a HIV positive kiddo- what if she gets sick? Will she end up in the hospital from a cold? Do I need to worry about her immune system?

All kids get sick. It is part of life. Yes- you would watch a bit more closely, but it really depends on what his immune system is up to. A cold does not mean a hosptialization. The medications used to combat the HIV also help normalize the immune system. Most of the time the body will fight it off just like it would for anyone else. Of course there are exceptions, and sometimes HIV kiddos do get sicker. Just like cardiac kiddos, or diabetic kiddos, or any kiddo that deals with a chronic medical condition. There are things you can do to help your kid's immune system. Most important thing is frequent handwashing. In our family we use vitamin C and D as immune boosters (especially in the winter).  We also avoid gatherings when others are sick. That also has more to do with my not wanting the kids to get sick than the HIV. Sick kids are not fun! 

3. How often are doctor visits? How much do the meds cost? How often is lab work?

Doctor visits with the pediatric infectious disease (or PID) doc are every 3-4 months for most kids with HIV. Labs are the same frequency. The medications are usually covered well under insurance, and if not there are medication programs to help reduce the cost if needed. The families I polled pay about 35-80 dollars per month for all the meds. We fall in the middle of that. 

4. What if the meds don't work?  What if the child becomes resistant to the meds? What about medication side effects?

Drug resistance usually occurs when the medications are not given regularly. Missed doses or frequent medication changes can lead to drug resistance. There are now very sophisticated tests that help the PID if this situation arises. There are several types of HIV and some types respond better to different meds. There are 5 categories of HIV meds, and around 25 different meds total. Research is being done to increase the medication options.  If resistance occurs, there are tests for that too. The resistance tests (which are all blood tests) help determine what the next step will be. Thankfully this is rare, and PID's are usually more than willing to collaborate with each other. There is still a great deal of research in HIV.  I talked with several people who have kiddos who are drug-resistant and none of them regret choosing this medical need. So far all have found treatment options- different combinations of medications or even research trials. My advice would be to call your local PID and ask them how they would handle this. The meds can have side effects, and like any med it really is dependent on the individual. We have been through one med change because of side effects. There are many medication options out there and finding the treatment regimen that has the least amount of side effects may take time. Part of the quarterly lab work is monitoring liver function and such to keep an eye out for early indicators of side effects. 

5. What about insurance costs? Can my insurance deny my child coverage? Will my rates go up?

An adopted child is added to an insurance plan just as a newborn would be. The insurance company is required to cover medical care as they normally would. If you are self employed and pay for private insurance, the rates could change at re-enrollment. If this is a concern, call the insurance company and talk with them. There are special programs for HIV kids, such as Ryan White, that help also. This looks different in every state- so you should call the local PID office and ask these questions. I promise those nurses are experts! They can give you the scoop on how the insurance wants the meds prescribed (monthly through mail order for ours), the assistance programs for medical and medications that are available in your state, and which ones are more of a pain to deal with. I am most familiar with China adoption, and HIV is less expensive than several of the other medical needs (like those that require multiple surgeries or therapy).

6.  What is the long term prognosis? Can a HIV positive person marry a HIV negative person and not infect them?

People with HIV have normal life expectancy. Dying from AIDS is pretty rare. A person with HIV can marry, have kids (even the old fashioned way!), without infecting their partner or baby if they are the woman. Magic Johnson and his wife have been married many years, and she is still HIV negative. 

7.  Are there extra or different visa requirements for adopting a HIV positive child internationally? 

I can answer this for China, as that is my experience. I am not sure how other countries handle this. Three days of sputum sampling, a chest X-ray, and a blood test are all completed prior to the US consulate issuing the immigration visa. It does not add travel time to the trip. The cost is minimal. 

8. What about disclosing? How about dealing with stigma?

These are the hardest questions, and I will answer them in another post:) 

Resources:

http://aidsinfo.nih.gov/guidelines/html/2/pediatric-arv-guidelines/0 

http://www.projecthopeful.org 

http://hab.hrsa.gov/abouthab/aboutprogram.html 

http://www.dinglefest.com/2014/02/hiv-faq-how-do-we-keep-other-kids-from.html?m=0

http://www.pkids.org

sympaschō

Romans8:15 So you have not received a spirit that makes you fearful slaves. Instead, you received God’s Spirit when he adopted you as his own children.[h] Now we call him, “Abba, Father.”[i] 16 For his Spirit joins with our spirit to affirm that we are God’s children. 17 And since we are his children, we are his heirs. In fact, together with Christ we are heirs of God’s glory. But if we are to share his glory, we must also share his suffering.

Suffering with Christ. This was one of the things discussed in the sermon at our church this week. Our pastor explained that suffering with Christ means feeling what He feels. Having a passion for what He loves. In the words of Matthew West

"Father, break my heart for what breaks Yours

Give me open hands and open doors
Put Your light in my eyes and let me see
That my own little world is not about me"

The word suffering in this passage, our pastor explained, comes from the Greek word sympaschō. 

Definitions:

1. to suffer or feel pain together

2. to suffer evils (troubles, persecutions) in the like manner with another

   (Source: https://www.blueletterbible.org/lang/lexicon/lexicon.cfm?Strongs=G4841&t=KJV)

   
   

I want to share a secret. I prayed a prayer once for God to reveal His heart to me. Dangerous things are prayers such as these. 

Time went by. I worked different populations, and felt sympathy. I did not feel their pain together with them. Then I met people where I felt their pain. I felt how Christ feels. The heartbreak. The anguish. The beating my hands on the floor and crying out for them with all of my being. The fatherless. 

In a government office in China I met my daughter.  I witnessed the transformation from fatherless to part of a family for several children. I saw it again first hand when I met my son.  There is surely something wrong with the world that I have the privelidge to call another parent's children my own. These children who need families and love. These birth parents who made agonizing decisions. The world is broken. In a perfect world no child would be relinquished because of poverty, gender, medical issues, birth defects or any other reason. 

I do not believe everyone is supposed to adopt. Yet these fatherless. They permeate me. I constantly think of them. I see inside of orphanages in my head. I see children who need medical care and love. I feel the hurt along with them. I triumph when they get medical help, love, and families. I wake up in the morning thinking about the fatherless. I wake up in the middle of the night feeling the loneliness of the fatherless. I pray without ceasing about the fatherless. 

For years I asked why would God allow this? Why would the God of the universe allow a precious innocent child die alone in a room seemingly unwanted. It has taken me a while to understand that the world is at fault, not God. God is not a magician that waves a wand to take away the hurt. That would take away our choices. So God waves His arms and gathers in for a hug. He supports us and helps us through. God opens our eyes to the fatherless (or whatever it may be for you) so we in turn can be His hands and feet and do the work of God. The work of Love. 

I think everyone has a cause or a population that God will let you feel the pain together with. You will know you have found when it keeps you awake. When you constantly feel you need to do more. When you want to scream at the top of your lungs asking why is no one else caring, why is everyone not feeling this suffering. It is life changing, this sympaschō.  

God opened my eyes. He broke my heart for what breaks His. I suffer with the fatherless. 

6 months!!

This boy has been part if our family for 6 months. That is just nuts!! He has opened up and learned so much English. He is good at math and works hard at school. He is funny and kind. He has fit into our family like he always belonged. We love him so much. 

6 months ago today. He said good bye to everything he knew. His foster home. His foster siblings. This boy was so brave to come with this strange looking mama. 

He gained a loud crazy family. He gained grandparents, cousins, aunts, an uncle. He gained a future. We love this brave boy and we are so glad he is ours. 6 months has flown by! He loves ice cream and ultraman. He has a talent for drawing. He is tender-hearted. He is all boy. He can't wait to see snow for the first time. 

It is hard to catch him smiling for the camera ;). 

We love you Alex!! 

The week in review

We did school:

We had ice cream while other kids were sitting in a classroom

I figured out a very good reason to homeschool:

Teacher can wear pajamas:)

We had moon cakes:

I got crafty:

And I made a connection with a family adopting a kiddo from Alex's foster home. Another family is very close to travel and their son is where Claire was. 

Oh China. My heart is never far from there. I saw some statistics lately.  The shared list is the list of kiddos waiting in China that are not agency specific. 

On August 18 there were 1926 files. 1444 are for boys. That is 75%. Gone are the days of girls waiting. Now the boys wait. And wait. And wait. 656 of the files are for kids over the age of 10.  That is 34%.  All have medical needs. Many of the medical needs are easy to manage.   Questions? I am happy to chat:) 

First days of school

We kicked off our school year this week. So far so good I think. We are hitting the major subjects. I am figuring out what I still need (alphabet and number flashcards! More books! More magazines for cutting up). 

Here are some pics! 

Our white board wall. Since we are studying countries and cultures I am glad I found these cute cutouts! 

Alex's math and language art books

Noah's math and language arts

Claire happy to do school. Yes that is purple marker on her face. Shocking I know ;)

Aiden doing some pre-k. 

Alex doing math. This is easy for him so far. He is very smart, but at a slight disadvantage with English. I have a feeling he will learn fast. 

Noah working on cursive. He wanted to learn cursive this year. 

I think we are off to a great start. 

17 years!

Scott and I got married 17 years ago yesterday. It is funny to think back what we imagined our life would look like. We thought we would have a few tweenagers now. We thought we would still be in the south. I thought I would be an elementary school teacher and Scott was going to be a psychologist. 

We never imagined that we would have 4 kids so close in age. We never imagined we would move to NY. We never imagined where God would lead. 

For our 10th anniversary I was finally pregnant with Noah. 

For our 12th Aiden was on the way. 

For our 15th we got the call about Claire. 

For our 16th we were beginning the process for Alex. 

For our 17th.......

We are going on a hike together :D. Ha! Those who know us well know we love the outdoors. Up here there is so much to do, much of which is too hard for the kids. So we would rather go hiking than to eat at a fancy resteraunt. We plan to go tomorrow if it is not pouring rain. 

Here we are right after we said "I Do"

Here we are 17 years later! 

Summer is almost over

It has been dropping into the 50's at night here. In August.  So weird. In Savannah it is still in the upper 90's.  We are gearing up for fall. 

I know I have not blogged in a while. I have started several posts, and have more swirling around in my head, but they aren't coherent yet. 

So for now I will tell you what we have been doing this summer. We go out for soft serve ice cream. Up here there are little stands everywhere and it is pretty cheap! All 6 of us can get a treat for about 15 bucks. They have new favors every week- so far my favorites are lemon and coffee (not mixed together!)  Noah always gets chocolate, Alex likes most of them, Aiden's favorite is strawberry or raspberry, and Claire's favorite has been raspberry because it is purple(ish).  

Our summer nanny was wonderful! She did so much with the kids this summer, and they loved it! Thankfully she has promised to come visit or babysit when she comes home on her breaks.  She heads back to college, so our new one starts Wednesday. 

We are mostly all set for homeschooling. All I need are some old national geographic magazines- just have to get to eBay. We will probably start right around Labor Day. The kids are excited, I am a bit nervous about juggling everything. 

We have done some hiking. Not as much as I would like as work and chores seem to get in the way. We have caught lightening bugs. We watch the wildlife in our yard. We have a family with baby turkeys, and a bunny that we see pretty often. We have not seen the deer recently, but I bet they will be back when it cools off.  I will post a bunch of pics of the leaves changing. 

Here is how lush our woods are now. Wait until it changes! We can't wait to show Alex snow. He has never seen it!