[Please disregard the first 6 month report you may have received! It was accidentally published before it was ready. *sigh* Thank you so much for your forbearance, and I apologize for any confusion this mistake caused!
But you didn't really think I would publish a major Katie-update with one measly photo, did you?]
~Who ever would have guessed that Katie would turn out to be a good sport who was always ready for adventure? It’s true! She wakes up every morning with delighted smiles, raring to go! And she truly is always happy and gets joy out of small things that the rest of us usually take for granted.
~Her upper respiratory congestion cleared up a few days after we removed her NG tube.
~Her hair is slowly growing in on the calloused spot on the back of her head.
~She unhesitatingly reaches for and holds objects for a short time now.
~Several times, we have observed her passing an object from her left (weaker) hand to her right.
~She has learned to clap, and does so with immense enthusiasm!
~As Katie has grown physically stronger, her feisty side has also grown stronger. It’s as if she has not only come alive, but now she has discovered that she is alive! This is good and hard at the same time, as it can present some challenges. Some of the challenges come from her strength combined with her lack of coordination, especially while teaching her to drink. I’ve been experimenting with ways to help keep her cleaner during meals, so that she doesn’t need three baths a day.
My little hippie-girl…
And believe it or not, feisty girl Katie now knows how to be naughty! She loves to bang the side of her head with her toys, and she knows she’s not supposed to. She waits until we turn away to see what she can get away with, and giggles when she’s been caught! This is only funny, you understand, because she cannot get into real trouble!
Her new energy and motivation means her voice is getting louder. And the happier she grows, the louder she grows! If we’re in an environment that requires quiet, this means a continuous effort to distract her attention, and sometimes removing her from the situation. But most of the time, Katie’s happy noises are just part of our general household hubbub.
~Katie is growing faster than she is gaining skills. This means that she is getting heavier and still needs to be lifted, carried, moved in and out of the bathtub and supported for toileting. She does bear a slight amount of her own weight now, but is mostly a dead weight. Interestingly, I am growing stronger as a result. As I move Katie through her day, being the strength under her so that she can live as fully as possible, I often think of that formidably admirable and fictitious character, the Proverbs 31 woman. “Her arms are strong for her tasks…”
~Her first adult tooth has come in! Unfortunately, it is directly behind her front baby teeth. Her orthodontic situation will probably have to be addressed at some point, and since this cost won’t be shared by Samaritan, once again we will be very thankful for Katie’s care fund!
~Over the next two months, we have a hefty load of medical and therapy appointments. I list this under The Bad because medical appointments are not on our top ten list of most fun activities! But we’re grateful that these can be handled during our summer break. Up until now, appointments have been easily manageable and have barely interrupted the flow of the family routine.
Katie’s vision will be assessed by a pediatric ophthalmologist.
Last month, Katie received free hearing testing at the Clinic for Special Children with inconclusive results. They were inconclusive entirely because of Katie’s uncooperativeness with all the wires and leads, and her inability to communicate normally. She now has an appointment for a sedated auditory brainstem response (ABR) test.
While I was speaking to an ear, nose, and throat specialist about Katie’s sleep disturbances, she very obligingly fell asleep on my lap, whereupon the specialist declared, “She’s obstructing.” Katie provided us with a live demonstration of multiple episodes of obstructive sleep apnea. So she has another appointment set, this one for a sleep study.
In addition to these, next month she’s due to receive her second round of IV infusions for her osteoporosis.
~Long before we brought Katie home, we learned that because of her very long history of institutionalization and extreme neglect, she is at very high risk of bonding and attachment issues. As you may know, children who are deprived of the opportunity to bond with one nurturing caregiver from the time of birth can develop a difficulty or even inability to form healthy bonds later in life. This can show up as a propensity to seek affection from anyone who shows them attention.
Katie shows a preference for me, but we are not deceived in the slightest that she is actually bonded with me at this early stage. As she has gotten past many of her primary fears of strangers, we have watched her for signs of going too far in the other direction. In the past weeks, we’ve begun to see definite signs of this. She is now seeking out affection from others, even strangers. Rather than backing away from them, as she did not too many months ago, she’ll scoot in their direction and reach out for their hand, and say, “Mama.” She does use the word “Mama” for me, but has also begun using it for others she wants to go to.
This tells us to be all the more vigilant and protective of her process of attachment with me, and of the physical boundaries around her. Katie needs to receive lots of physical affection, but as difficult as it can be to enforce this, she should not receive it from anyone outside our family. We have to be adamant that as much as possible, Katie is cared for by me, learns from me, interacts with me, and receives lots of affection from me.
~None of Katie’s needs are difficult to meet in and of themselves, but her total care continues to be very time-consuming. I’ve had a definite mental block to overcome when considering all the activities we’d like our family to do over the summer. It would be easy to talk myself out of the production involved in getting out of the house with everyone, especially since I might naturally want to rest from all the necessary appointments. The day we spent at Longwood Gardens some weeks ago was our first big attempt, and we were pleased and surprised that it was such a fabulous experience.
I feel almost reckless as I forge ahead with plans, as if jumping into the cold water of the pool with both feet.
But I know this learning curve is just part of my transformation into that savvy mom with the “handicapped” placard, who slings adaptive equipment about with a practiced hand. The more I do it, the better I’ll get, right? I can start small and work my way up as I gain expertise.
First visit of the season to our favorite creek~
~You know how it is when we look ahead to a difficult time? It can grow to impossible proportions in our minds. Then afterward, when we look back on that time, we wonder how in the world we ever did it. But at the time of difficulty, God is right there with His grace, and we do what needs to be done. I already look back at this past school year and wonder how it all worked. But it did. The children were well fed, loved and hugged, clean when they needed to be, and the schoolwork got done. He has not left us stranded in our need. He is right here with His grace, just as He promised to be.
He has been ministering to us through others, like the time a close friend called to say that she had tripled their supper meal and was bringing two casseroles over for us. A close friend, I should add, who has her own large family to care for. The blessing she gave us went far beyond the food, tremendously helpful as it was! I could tell of other friends, giving other practical help on the spur of the moment, always exactly what was most needed when it was most needed. If I tried to list them all, the list would be so long you would be bored before you read half of it!
Like the time I needed to go home from the church meal to prepare and feed the two little girls food they could eat. Another mom asked if she could go with me to help, so I didn’t miss out on much-wanted visiting time.
Or the time I was feeding the two girls at another church meal, emotionally very low, and the women of our church found their way over to my corner and surrounded me with loving support, listening ears and very specific prayers for me and the little ones in Pleven.
Another church friend went to our favorite thrift stores to shop for summer clothes for a few of our boys. I was in the thick of it and rarely got out of the house, but we were experiencing some warm days. When I asked her what we owed her, she said that she originally intended to let us pay her back, but when it got right down to it, she really wanted to bless us in this way. And she found plenty of excellent items that we are so grateful to have!
We could not possibly be more blessed by a church body than by our friends at this little fellowship.
My heavenly Father has ministered grace to me by every single precious note that any of you have written. Every line, every thoughtful word, went straight to its mark and helped to strengthen my heart. Thank you.
He also puts truth into my mind when it’s so exhausted and sluggish I wonder if it will ever be sharp again. Even when I get the hymn wrong or can’t remember the whole verse, He uses it to “strengthen the hands which hang down, and the feeble knees.”
There are so many ways, far too many to list, that He has met our weakness with His strength. He is the strength under and around and in us so that we can live this life He has called us to live.
~Not long ago, I was filling out a form and had to list all Katie’s immediate family members. As I realizing what I was truly listing, a profound thankfulness rose in my heart.
Brother, age 18
Brother, age 16
Brother, age 15
Sister, age 12
Sister, age 10
Brother, age 6
Brother, age 5
Brother, age 5
Brother, age 3
Sister, age 21 months
This is a list of some of Katie’s greatest assets, her wealth. She has seven brothers and three sisters. Ten affectionate siblings. The riches of our family’s life are not financial or otherwise impressive to worldly eyes. But financial wealth is not what Katie needs most. I want you to know that while this is not an easy life, it is a good life.
~Katie is now pulling to stand, with support!
~A physical therapist who assessed Katie stated firmly that she would be miserable being held immobile in a stander. We have loaned out our corner seat and stander to a little boy in our area who has severe delays, and put Katie in her Rifton Pacer Gait Trainer. The same therapist made the admittedly ambitious prediction that Katie would be walking in a year!
She almost always wears her JumpStart Leapfrog DAFOs and her Stride Rite sneakers while in the gait trainer.
Wait a minute.
That simple statement needs to be opened up a little more, so you can see the typical provision of the Lord for Katie-bird.
She was measured for her DAFOs by Verity’s physical therapist at no charge. The DAFOs were bought using money out of Katie’s care fund, given by many generous hearts. I went shopping in the attic for her sneakers, to find that a nice thrift store find from months ago is perfect for her need right now. And the pricey gait trainer itself? Was given to Katie by a family who no longer needs it for their little girl. God is providing, friends, just as we trusted He would as we looked ahead to this time. Just as He promised to do.
~Katie occasionally pulls up to a hands-and-knees position on her own. She can also pull her upper body up onto a low bench, then pull her lower body up onto her knees.
~She readily goes from her belly to a sitting position correctly!
~She’s now drinking her eight ounces in fifteen to twenty minutes with much less mess. Her drinking technique is not perfectly correct yet, but it’s working!
~Some of you mamas out there will understand my joy in reporting that Katie actually drank from a short straw several times, for just a few sucks each time! And…
~She is now beginning to chew! More cause for joy! She also understands and responds appropriately to the word, “chew.”
~For a few weeks before she said, “Mama,” she mouthed the word without using her voice. Now she’s doing the same thing with a few other words! These are all words that contain “M,” “B,” and “P.” For instance, she says the word “up” in a whisper, as you can see in the video of her standing up. She says, “puh-puh” for the word “diaper,” and “pah” for “potty.” When I am focusing on encouraging her to speak, she tries very hard to mimic me. Her attempts to say the word “shoes” produce an approximation which has been declared recognizable by others. We don’t know how far Katie will go with speech, but just this amount of progress is stunning, even if it stops right here.
~She can sign “All done” in an uncoordinated manner. She can sign “All clean” with support.
~When we first brought Katie-bird home, she was eager to be put down in her bed at the end of the day. I always give her extra snuggles for a few minutes before laying her down. In the beginning, I had to do this in short spurts, as much as she would tolerate. When I laid her down, she would immediately scoot backwards away from me, and always watched my hands warily if I put them into her bed.
After a few months, she no longer pulled away from me toward her bed or scooted away when I laid her down.
She has begun to emphatically turn her face and body away from her bed as I approach it to lay her down at night. Now when I give her those extra snuggles, she soaks it all in quietly for longer and longer periods of time. Sometimes she even lays her head briefly on my shoulder or against my face. Little sweet girl is learning that it’s safe to let her guard down.
A year ago, in the midst of the adoption drama, I kept my eyes on the hope that one day, all the hype would simmer down and Katie would just be our child in our family.
Thank the Lord, now that day is here.