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.


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