Wednesday, November 26, 2014

An Update on the Twins....

A lot has been going on for our girls this month. They have met with a nutritionist, their infectious disease doctor, and had an evaluation for physical therapy. We are so lucky to have such an awesome team of people to work with our girls!

The nutritionist: Has given us a few things to change in the girls' diet. We will now be gradually switching Akos from formula to Pediasure (to increase her calorie intake). We were unable to do this from the beginning because of the dangers of 're-feeding syndrome'. (Which we have learned is deadly. Severely malnourished kids have to be careful to not overwhelm their systems. Or something like that.) We also have to feed her as much organic food as possible. This has something to do with having a weaker immune system. (The girls were getting very fidgety by this point in the conversation, so I'm not as informed as I should be!) Akos is now at about the .5th percentile for weight/height for her age.

Ataa is still struggling to grow. She is only in the .078th percentile (which is not even on the chart). She still has horribly dry, itchy skin. The nutritionist suggested that we at least try a month-long trial of being completely milk-free. Her formula was switched to a high calorie lactose free kind. If this helps her skin, she will stay on it for a good long while. Even though she eats baby food and some table food, the formula will help ensure she is getting all she needs until she gets to a safer weight.

Infectious Disease: Had some great news. When Ataa first started treatment for HIV, her viral load (number of HIV copies in a milliliter of blood) was over 260,000. After only 2 months of treatment, her viral load is now around 2,866. Akos' viral load started out at around 160,000 and is now around 2.400.  Their CD4 cell count started out in the 300s. While they weren't able to get enough blood drawn to let us know what it is now, we can assume it is increasing! (Enabling their bodies to more effectively fight off infections.) Furthermore, we get to skip a month of blood draws! We don't go again until January! It is very possible that the virus will be undetectable in their blood at that time!

In fact, the ID doctor has always made it known that HIV isn't even the big deal. Right now the biggest threat to their health is actually a different diagnosis: Failure to Thrive.

Infants or children who fail to thrive have a height, weight, and head circumference that do not match standard growth charts. The person's weight falls lower than 3rd percentile (as outlined in standard growth charts) or 20% below the ideal weight for their height. Some children who fail to thrive exhibit the following symptoms:
  • delays in reaching developmental milestones such as rolling over, crawling, and talking
  • learning disabilities
  • lack of emotions such as smiling, laughing, or making eye contact
  • fatigue
  • irritability
  • delayed puberty in teens
And lastly, they discussed the girls' umbilical hernias. He said these should go away on their own. If they don't, they will have surgery around 5 years old to fix it.

Physical Therapy: The twins' recently had an evaluation to see if they qualify for in-home physical therapy due to their developmental delays. It was determined that they are both delayed pretty much across the board, and qualify for services. Many delays come from lack of stimulation. Others (like the inadequate facial muscle tone) do not. We are being set up with a professional who will come out on a weekly basis to work with the girls toward reaching developmental milestones.

Akos is actually already crawling. She is very active and is making some pretty interesting 'words'. She can easily pull up to stand, and is excellent at feeding herself. And she will dance to ANY beat she hears! She is now 14 lbs.

Ataa is still much weaker, but pretty alert. She is trying really hard to crawl, but gets frustrated very quickly. She is very lethargic most of the day, but does have small bursts of energy every once in a while. She can't pull to stand on her own. And she's not quite as precise about feeding herself as Akos is. She is babbling more and more, but still mostly makes beginner sounds: ba, ma, da... Ataa weighs 12 lbs now!

So, that's about it. They still have a long way to go. But I think they're off to a pretty good start.


Thursday, October 9, 2014

HIV, AIDS, and Life....

Just in case you are REALLY interested.....

Here is a little more info on HIV & AIDS. (Yes, I do think it's that fascinating.)

As we have already established, CD4 cells (T-cells) are what helps your body fight infections. So, what should your CD4 count be? Well, here's a chart:

When your CD4 count drops to 200 or below, you are diagnosed as having AIDS. Contrary to popular belief, AIDS isn't a disease for dirty, poor, homosexual, drug using men. That's ridiculous. People with AIDS are not monsters to be scared of. Nor is everybody with AIDS on their death bed. They are JUST people who have a low CD4 count. In fact, if a person is diagnosed with AIDS, then starts taking medicine & gets there CD4 count back up over 500, their diagnosis sticks with them. You can be super healthy and still have AIDS. It's nothing to be ashamed of, although many people are made to feel that way.

(Right now my kids' CD4 count is pretty low. I can't help but wonder how they would be treated if it had been slightly lower, and we told people they had AIDS instead of HIV? While there is a lot of fear surrounding HIV, the mention of AIDS seems to strike terror in many. My hope is that people who read this won't be afraid of AIDS if it is not shrouded in mystery. It just signifies that at any point in their life, a person's CD4 count dropped below 200. That's all.)

Then there is viral load. (The amount of virus in your blood.) The goal is for it to be undetectable. And yes, that is very possible! At this point there is no cure for HIV, but there can be so little of it left in your body that it's 'undetectable'. Once you reach that point, your  immune system is working great, and it's no big deal if you get sick. Your body can fight it off, just like any body else's!

Medication for HIV has come soooo far. What will it look like from here for our girls? Well, they have started their medicine routine. Their CD4 count should start going up. (It usually rises quickly for children.) They will have to be very adherent with their medicine so as not to give the virus a chance to become resistant. (Sometimes people decide that they look and feel great, so they don't need the medicine. This give the virus an opportunity to mutate and become resistant. This would require them to switch medication to something that works. If you consistently stop & start meds, you eventually run out of meds to switch to.) Anyways, their CD4 count will eventually reach normal levels, and they will live normal lives. (Aside from taking daily meds, but that's true for LOTS of people!) Once they get old, their CD4 count will begin to decline (somewhere between 60s -80s). This is a natural occurrence anyways. It's why they suggest older people get the flu shot every year. Because older people have a lower CD4 count, so they can't fight off infections as well.

In general, my girls' lives will look much the same as yours. They won't need to grow up in a bubble. They're not that fragile. They will grow up to see their grandchildren. (Whom, by the way, will be born HIV negative. More on that later.) Yes, they will have more doctor appointments than the average person. But it won't slow them down!

Sunday, October 5, 2014

What is HIV.....?

It's still kind of a mystery to many. Most people know it is somehow related to AIDS & Magic Johnson, but that's about it. So, just in case you were wondering..........

What is HIV.....?

HIV is a virus that attacks the immune system. Since it can't reproduce (make copies of iteself) on its own, it attacks the cells in your body and uses the cells 'machinery' to make copies of itself.

CD4 cells are a favorite target of HIV. It turns  infected CD4 cells into HIV factories. HIV makes so many copies of itself that the cell eventually breaks down & dies. As more CD4 cells die, the immune system gets weak. A weak immune system makes it hard for the body to fight germs and avoid infections.

So then what is AIDS......?

AIDS (Acquired ImmunoDeficiency Syndrome) is a medical term that means you have advanced HIV infection and are at high risk for Opportunistic Infections (infections that your body can no longer fight off because HIV has destroyed too many CD4 cells). With AIDS, your body has so few healthy CD4 cells that it may not be able to fight other infections or diseases like cancer.

The most common Opportunistic Infections are:
Thrush, Cytomegalovirus (a viral infection that causes eye disease), MAC (a bacterial infection causing fevers, stomach problems & serious weight loss), PCP (fungal infection that can causes a fatal pneumonia), Toxoplasmosis (an infection of the brain) and Tuberculosis.

Some HIV related terms:
Viral Load: How much HIV is in your blood. The lower your viral load, the fewer viruses that are attacking your cells and the less likely it is that HIV will make you sick.
CD4 Cell Count: How many CD4 cells you have in your blood. The higher your CD4 count, the better your immune system will work to fight off infections.

The goal is to have a low viral load and a high CD4 count. Luckily, there is medicine for that!

So is HIV a death sentence.....?

Nope. With daily medication, regular laboratory monitoring, and lifestyle changes (e.g., exercise, adequate sleep, smoking cessation), HIV can be manageable as a chronic disease. People living with HIV can enjoy healthy lives. <*>

While there is no cure, medication has come a long way. People can now get their viral load down to undetectable levels, and grow up to be grandparents. And advances are still being made in the field of HIV treatment. HIV is no longer the disease it was in the 80s. Unfortunately, most people's information on the disease is still from the 80s. It is time that we replace fear with knowledge.....

Thursday, October 2, 2014

A Whole New Story.....

Hey. Remember me? I'm Carrie. The one who used to (not-even-so-regularly-then) post on this blog. Ya know, back in the days when we were adopting our two kids (Serwaa & Konto) from Ghana, West Africa. But then the kids got home. And I kinda stopped writing. Not that I had nothing to say! There were soooooo many funny things that I wish I would've recorded over the last few years! There were lots of firsts for the new kiddos. There was lots of sibling jealousy. There was an endless amount of hilarious stories due to my children not fully understanding English.... I just got busy and stopped blogging.

But I'm back. (You're welcome. Haha!) And I have a lot to say. But first- I guess I should fill in what all has happened since I last posted. Here's the quick recap:

In March 2014, I went back to Ghana. This time it had nothing to do with adoption. It was more like a mission trip. (We now have a small non-profit working in Ghana.) We were there to deliver medical supplies to a new hospital, purchase chickens for an orphanage poultry farm, have clothes made for the orphanage kids, deliver Bibles, and pay school fees for the high school & college age orphans. (And probably some other things I forgot...) Anyways- that was it.

While there I met 6 month old twin baby girls at one of the orphanages. No big deal. I'm more of a fan of older children. That was mid March. Near the first of May, we got news that the twins had fallen ill, been diagnosed as HIV+, and were taken to (and left at) the government hospital where they were expected to 'expire'. No one was able to care for them due to their illness. Furthermore, it was going to be fairly impossible to find an adoptive family in time. (The Social Welfare officer in that area was requiring that a family meet the kids, then return in  a month to adopt if they still felt compelled.) On top of that, this particular orphanage had never done an adoption. A family would need an agency to walk them through the process. Unless...... that family was VERY familiar with Ghana adoption & could proceed without an agency. (This would be ideal because the process would go quicker without hiring an agency and waiting for them to get everything in order.) But- the family would have move very quickly in order to get through court & file immigration paperwork before the US law changed (on July 14, 2014) to REQUIRE families to use an agency to adopt. This wouldn't be possible- unless the family had already met the girls a month prior (thus skipping the month-long waiting period SW required). As it so happened, I had already met the girls, was familiar with the process, and we were comfortable working without an agency. So, it began.

After a very short adoption process, the girls made it home on September 20th, two days before their first birthday.

Well, I said I was going to tell the short version. I may have lied. Sorry. But now you're caught up. So here we are with 5 kids. And two of them with a disease that terrifies most of the world.

That's where I'm stopping for tonight. But it is only the beginning of what I have to say.....