Housekeeping Q: I left a comment that didn’t appear. Did I do something incorrectly?
A: If you don’t see your comment appear, you probably clicked on one of the photos, and commented in response to it. Every so often, when I check comments, I see that someone has replied to a photo. The only way to see those comments is to click again on the photo. So I get to read them, but nobody else does unless they click on that same photo.
Does that make sense?
Q: Is Katie covered under your family’s medical insurance now that her adoption is finalized?
A: Our family’s health care plan is not health insurance, it is our membership in Samaritan Ministries International, a Christian health care sharing program that is exempted under federal health care legislation. We are legally considered self-pay patients. There are layers and layers of story under this aspect of Katie’s adoption which I cannot yet tell here on the blog!
Katie was added to our family’s membership in Samaritan Ministries the moment she was added to our family.
We do all we can to eliminate unnecessary medical costs and pursue ways to lower legitimate medical costs. We love our brothers and sisters in Christ who are helping us with our burdensome medical bills; we want to keep their burden as light as possible.
Our final trust is not in Samaritan, though, it is in God. And at every turn, God has provided.
He has worked through many of you to help put together a care fund for Katie’s needs that are not shared by Samaritan. We will stretch every penny of those funds, which will be used primarily for various therapeutic tools and equipment. We are so thankful for each of you who have shared in this way! We have used a little of the fund already to purchase supplies such as a used IV pole, interlocking foam matting, and an exercise ball.
We currently have well over a thousand dollars’ worth of medical supplies related to Katie’s feedings, all of which were given or loaned to us!
Because Katie is a patient at the Clinic for Special Children, we will receive a 70% self-pay discount on all services we receive from CHOP or DuPont. The Clinic does not work with any type of insurance, and offers services at free or greatly reduced rates, although the doctors there are world-class.
We do not fear the future years of extra expenses. Our God knows all about Katie’s needs and has taken them as His own responsibility. We love trusting Him to provide, we love seeing Him work outside the usual boxes to do it, and we love telling other people how faithful He is!
Q: The brittleness in her bones…what is the eventual treatment for that? Can it be corrected or reversed?
A: Yes, it can be corrected, but it will take a long time. Her bones are in such bad shape that if she rolled off a bed, she would crush them. Dr. Strauss explained that the three top remedies for her fragile, porous bones are as follows, in this order:
1. Weight bearing. We are looking into getting a stander for Katie, and are excited to see how God will provide for this need. Dr. Strauss is researching whether there is a bone density threshold below which a stander would be contraindicated. We may need to wait for the results of the DEXA scan.
2. Vitamin D. Katie’s vitamin D levels were tested at CHOP, and were precariously low.
We are also considering a medical therapy to help build her bones, but this also needs to wait for the results of the DEXA scan.
As she rounds out, we will have to guard against the impression that she is less fragile.
Q: What about the growth hormones? Will her body ever reproduce them? Will they give them to her artificially? Is there any need to do that?
A: We don’t know the answers to these questions yet. We should begin getting answers as the CHOP doctors get their reports to Dr. Strauss.
Q: What does the malnutrition do to her body as she approaches puberty? Will she bypass that?
A: Good questions! I’ll take them to Dr. Strauss!
Q: Does she still have her baby teeth?
A: Yes, she still has her baby teeth. We don’t yet know how her malnutrition has affected the development of her adult teeth.
Q: Have her vision and hearing been checked as well?
A: Not yet, but they will! All in good time, my friends! Other than her initial visits with Dr. Strauss, we decided to let the non-urgent stuff wait until after the first of the new year. The hearing testing can be done at no cost through the Clinic. Her vision testing will be done by the same pediatric ophthalmologist who sees Verity.
Q: I was wondering whether you bolus feed Katie, or do you have a pump?
A: She gets three bolus feeds during the day via syringe, and a continuous feed overnight via feeding pump.
Q: You said you were feeding Katie little bits of tasty foods; what are you feeding her?
A: *proceeding to scandalize every health nut out there*
Over the past week and a half I’ve given her tastes of banana, white chili, orange jello made with pineapple juice, with pineapple and shredded carrots, egg yolk from a fried egg with butter, red and blue jello with pear, Clementines, oatmeal with brown sugar, taco bake, homemade chocolate frosting, creamy natural peanut butter, homemade strawberry jam, bananas in orange juice, pizza sauce, soft spiced and sweetened apple from apple crisp in mama’s milk, decaf coffee with milk, oranges, barbecued chicken, twice-baked potato, ripe plum, Dove milk chocolate, mashed potatoes, chicken divan, ham, scrambled eggs with onion and ham, bits of wheat cinnamon rolls [thank you, H! they were fabulous!] and baby food pears. I might have missed some.
I use my finger to put the food into her mouth while I am giving her the bolus feed of fortified breastmilk, so that she associates eating with getting a full tummy. She will only take food from my finger. Spoons of any kind are anathema to Katie. We wonder if it has to do with past associations?
What does she think of all this real food?
She approved of it all, and…
[please brace yourselves]
…she is eating.
She gradually showed more and more enthusiasm by opening her mouth wider, pulling my hand toward her mouth, chomping down on the finger that is feeding her, smiling and even laughing at each bite.
By the end of this past week, she was eating as much as several tablespoons at a meal! She is eating enough that we will have to adjust her diet to prevent her from gaining too much too fast! We are praising God for this stunning progress!
Q: I know you said that the doctors are thinking that she will need the tube for about a year (or more)… why are you not opting for a g-tube so she doesn’t have to have the tube down her throat?
A: We knew beforehand that G-tube surgery might be unavoidable down the road, but after receiving strong encouragement and support from a doctor friend, we decided to give her a fighting chance to eat by mouth. The type of feeding tube Katie is using is the same type we used for Verity. It’s a thin, buttery-soft NJ tube being used as an NG tube and can be used long-term, being changed once a month.
We knew it could possibly interfere with her learning to eat, and we’re so thankful that it doesn’t seem to be hampering her desire or ability to take food by mouth.
Q: What type of downs does Katie have? From her pictures she does not look like she has an extreme case? Is her diagnosis similar to Verity’s?
A: I was so glad to see this question! It provides me with a marvelous opportunity to dispel a few commonly-held myths!
I know my answer may look technical, and may tempt most eyes to glaze over, but if you are not already familiar with Down syndrome, I hope you take time at some point to digest this information. If you do, thank you so much for being willing to learn!
~Down syndrome is like pregnancy in that you either have it or you don’t. Most of us have the typical two copies of the twenty-first chromosome in every cell of our bodies. Nearly all people with Down syndrome have three copies of their twenty-first chromosome in every cell of their bodies. There is a relatively rare exception to this rule. Mosaic Down syndrome affects some but not all the cells of the individual’s body. Depending on which cells are affected, the individual could display very few characteristics of Down syndrome or, more commonly, be nearly indistinguishable from those with regular garden-variety Down syndrome.
~Not all people with Down syndrome have the same physical features. There are distinctive physical features that are commonly present in individuals with Down syndrome. But not all people with Down syndrome have every one of the features on that list. And the features on that list can be found in the general population. Katie’s karyotype, or the test which showed what her chromosomes look like, showed that she has Down syndrome. Katie has some of the common features, but not all.
Verity’s karyotype showed that she has Down syndrome. Verity also has some of the common features, but not all.
~There is a range of cognitive abilities among people with 47 chromosomes just like there is a range of cognitive abilities among people with 46 chromosomes. The cognitive impairment of most people with Down syndrome will fall somewhere in the mild to moderate range.
~It is impossible to determine someone’s level of cognitive ability by the strength or weakness of their Down syndrome features. The extent to which the common physical features are present in people with Down syndrome is entirely disconnected from their cognitive ability. This means someone may have strong Down syndrome features and a mild cognitive impairment. Someone else may have mild Down syndrome features with a moderate cognitive impairment.
It should go without saying, but unfortunately it cannot, that people with strong Down syndrome features and profound cognitive impairment have the same value in the eyes of their Creator as people with no Down syndrome features and gifted cognitive ability.
We think brains are overrated and love is underrated.
Just throwing that in there for good measure; we have no little experience with both.
Q: Because she is so very tiny, do you know if she could have a form of dwarfism as well as Down syndrome?
A: We know that she does not.
Katie’s condition was not caused by her special needs, it was caused by criminal neglect of her needs from the time of her birth. She was placed in the orphanage and neglected because she was born with Down syndrome.
You may not have read enough of Katie’s story yet to know that there are other children in Katie’s former orphanage who are also very tiny due to lack of human contact and lack of sufficient nutrients, among other preventable causes. Some of the other children have Down syndrome like Katie does, some have other diagnoses like cerebral palsy. What they all have in common is not some rare diagnosis, it is the way they have been neglected.
One of the blog posts currently under construction will attempt to tread carefully through many more issues related to Katie’s former orphanage.
Q: Have you found anything yet (besides music) that she seems interested in?
A: Yes! This will also be the subject of a future blog post, Lord willing!
She is unequivocably uninterested in Violet the talking puppy dog…
…and in her little pink, sparkly ball.
“Will someone please get this irritating thing…”
“…out of my sight?”
Suggestion: I think you need to add to the name of your blog to include the blessings and joys of your little sparrow.
Response: If we ever change the name of the blog, the new name is ready and waiting, and is very different from its current name. But we’re not quite ready to do that.
Did you know that the word “verity” is actually an English word? It means “truth.”
…the blessing of truth…
Suggestion: Oh, and I realize you have your own ideas of what you want to do with her hair, but I am making a plug for the length and style it is now.
Response: We agree with you for many reasons.
By the end of this past week, it moppishly needed a trim.
Unfortunately, I tried to trim it myself so Katie didn’t have to be subjected to a hair salon. EEEEEK!!! Oh the distress! Oh the unspeakable dismay that filled my maternal heart when I surveyed the results of my depredations! How I regret it!!! NEVER AGAIN!!!!
My few small consolations are as follows: 1) Katie tolerates my efforts to cover it up with hood, hat or hairbow. 2) Uh, it no longer looks moppish. 3) Hair GROWS!!!
The following photo was taken in response to a request that I provide some perspective on her size in relation to a known object.
Oh, you thought you would see a photo of the havoc I wreaked?
Katie with hood on full size bed I~
Katie with hood on full size bed II~