Katie’s second month home could so far be described as settled.
She feels completely comfortable in her home now, except for a few rooms she doesn’t go into very often. She still reacts against unfamiliar places such as our closet, if I enter them while carrying her.
She is more tolerant of Verity, and of seeing me hold and care for Verity. She was pretty jealous there for a while.
[Nearly all the matching clothing you see our little girls wear came from one person. Thank you again, L! So fun!]
“Girls, look outside! Outside!”
“Pat, pat, pat Katie.”
What did Katie snag?
“Eeeeek! Verity, watch where you are sitting!”
“I guess I will laugh about it with everyone else!”
She tolerates more and more touch, and just this past week began actually seeking out affection. She has a certain look when she wants hugs and kisses, almost as if she has to psyche herself for it, but wants it in spite of the intensity.
She will now reach her arms out toward me to be picked up when I come to her and sign, “Come,” and say, “Katie, come to Mama!”
And she’s eating!
Do you remember that back in the beginning, Katie refused to take anything by mouth? She would let it all drip back out. If I persisted, she would turn her head away and cry. She gave the same reaction whether I attempted to touch her lips with a spoon, cup, bottle nipple, or pacifier.
We gave her a complete break from eating by mouth from the time she received her gas-mask NG tube…
…until she’d been home for four days, when I began giving her all sorts of tasty tastes.
Over the next two weeks, she progressed from simply tasting the food to actually eating small amounts of it.
During this time, she also began reaching out for my hand as I gave her each bite with my finger.
From the very first time I detected that she had begun to pull my hand to her mouth, I required her to reach out and pull it in every time. I got the bite of food ready on my finger, held it out in front of her, and waited.
My “feeding finger” was getting bruised and sore from her little sharp teeth, although she does not have an overactive bite reflex. Then one evening several weeks ago, Joe noticed the grimace of pain that crossed my face with each bite I gave her. He encouraged me to try the spoon again.
So we pulled our maroon spoon out, and in the midst of her feeding, without missing a beat, I smoothly switched to giving the bite of food with the spoon instead of my finger. She thought about it for a short time, then decided not to make a fuss. I continued the feeding using the spoon, and before the end of that meal, she was grabbing the handle of the spoon and pulling it to her mouth as she had previously grabbed onto my hand.
Before too long, she was so secure with her response to being fed, that I decided to try the feeding chair.
She eats up to a cup of food at each meal now.
Breakfast is generally egg yolk, cooked in oil, half a slice of toast or half a cup of oatmeal, and a mashed banana or about half of a Clementine, cut into small pieces. She loves it when I mash a banana in with the oatmeal!
For her lunch and supper, she’s had quite a variety! She’s enjoyed all the foods I’ve given her so far except roast beef. Oh yes, and Subway veggie beef soup which admittedly tasted like over-salted canned potatoes. Blech. That doesn’t count as real food, anyway.
Now that she is eating significant amounts of food, and gives the same pleased reaction to green peas as she does to french toast with real maple syrup, I’m giving her considerably more nutritious table foods. *health nuts may now heave a sigh of relief*
In addition to the supplements prescribed for her by the doctor, I give her about a teaspoon of organic cold-pressed coconut oil every day. She thinks this is the greatest treat! I also add the contents of a ginkgo capsule to her breakfast milk, and several drops of grapefruit seed extract to each of her bottles.
She does not drink by mouth. All thin liquids run right back out. When we are ready to wean her from the NG tube, we will need to thicken her liquids with guar gum, to make it possible for her to eat them with a spoon. When she is able to take all her solids and liquids by spoon, we will be able to remove her NG tube. I am guessing that this day is not far in her future.
Dr. Strauss has made himself available to answer questions and concerns by email, including “how to make sure Katie doesn’t grow stout.” So he is able to update her care plan, using information I send him, without the need for many office visits. This has been a tremendous blessing to us!
During her next actual doctor visit at the end of the month, we should get some answers to our questions about her hormone levels.
We have Katie wearing Hip Helpers twenty-four hours a day now, except for public occasions such as visits from guests or photo shoots. Hip Helpers are designed to help prevent excessive hip abduction, or “froggy legs,” in children with low muscle tone. This causes more obstacles as they learn to move their bodies properly.
This hip abduction issue, like many others, is still being debated by some, but we have been impressed with the results of a similar treatment for Verity. When Verity was an infant, and slept without something holding her legs in line with her hips, her legs would “frog” outward. Now, when she sleeps without a Hip Helper, they never “frog.” She is always either curled on her side or on her belly with her legs going nearly straight downward. We still use Hip Helpers for Verity, because they give her the input she needs to help her crawl in a more organized fashion.
And we have already noticed good results in Katie. Without her Hip Helpers, she scoots with both legs together and both hands together, pushing off with the inner sides of her knees.
With her Hip Helpers, she must work much harder, and she does! We are so proud of how determined she is and how hard she works! And with her Hip Helpers on, she is now scooting in a more correct fashion, pushing off with her feet, and pulling forward with one side or the other rather than with both sides equally.
We stopped using cloth diapers for Verity halfway through her first year when we realized that having all that bulk between her legs was working against the best interests of her hips. We decided to wait until she was much bigger to switch back to using cloth, and in fact, we have just started using them for both girls this past week.
Katie after her bath, with her huge overnight cloth diaper and no Hip Helpers~
Katie with her huge overnight cloth diaper and her Hip Helpers~
Katie received an unsedated DEXA scan over a week ago, and we have not yet heard the results. Once we get the okay for her to be in her Squiggles stander, Verity’s physical therapist has offered to fit it to her at no charge to us! We’re so thankful for her kind offer!
Katie did well for her actual scan, but was traumatized by the very large waiting room full of strangers. By “traumatized,” I mean looking about with fear and crying inconsolably with loud and terrified sobs.
The same day she got her DEXA scan, she also had an unsedated dental cleaning. I plan to write more about that extremely emotional experience in a future post.
For now, suffice it to say, her teeth are clean!
They were healthy under all that junk! The dentist said the thick mineral layer that coated her teeth actually acted as a protection against cavities!
The gray color of her teeth was a layer of foul-smelling bacteria. It is now gone! There is no more aura of garbage pail wafting about my child!
Amazingly, during the past month, her lower right lateral incisor sprouted! It’s now halfway grown up in what used to be an empty spot!
She no longer drools!
She smells like one of my little children now. She smells like my milk, our food, our baby bath, our laundry soap, our toothpaste, our environment, mixed with her own sweet Katie-scent.
Her cheeks are chubby for kissing big squishy kisses, and she loves big, squishy kisses! She giggles and giggles when I give her slurberts.
She screamed bloody murder the first time I tried to bathe her in the bathtub, about mid-December. Last night, I set her on Laura’s lap to watch Verity having fun in the bathtub.
“What happens if I do this?” Hmmmm. So I have to teach her not to throw her toys out of the bathtub just like I did with all my other children!
I supported Katie in a sitting position in the tub while Verity was still in there, and she tolerated it with little complaining noises for a minute or so before she commenced to cry. I consider this progress!
Then I went ahead and gave her a sponge bath as usual. This put her back into a very contented mood. She loves a good sponge bath and coconut oil massage! I take this opportunity to give her firm pressure input, as well as proprioceptive input. Our proprioceptors are located in our joints, and I give proprioceptive input via a series of very gentle compressions to Katie’s joints. This will help wake up her proprioceptors so that they can help her be aware of where her body is in space. You are using your proprioceptors when you can close your eyes and know the position of all your appendages! This skill is one of the components to coordination, as you may know if you are accident-prone!
Katie blowing raspberries~
Katie being goofy~
Someone asked what our child training looks like with a child like Katie. So far, it means gently guiding her in the direction she needs to go, rather than leaving her to her own devices, even if it is initially uncomfortable for her. And even if it happens slowly over a very long period of time.
For example, I am teaching her to be aware of her, uh, her bodily functions.
***If you prefer not to read about this sort of thing, feel free to skip the next paragraph.***
Before I change her wet diaper, I take one of her hands and have her pat the appropriate spot, saying, “Mama, I’m wet!” Before I change a messy diaper, et cetera. She is so regular, and sends such clear signals ahead of time, that I realized I could probably catch some of the stinks before they hit the diaper, and that has turned out to be true. For the first couple of weeks, she fussed in a very whiny tone every time I held her over the appropriate location to do her business. But I praised her to high heaven every time, and told her what she was doing, and that she was SO big to do that! And just today, for the first time, she laughed and looked pleased when I praised her, instead of complaining.
Katie is a very expressive and interactive person. She is showing us more and more that she wants to communicate with us. She tries with all her might to speak, with the result that she is expanding her repertoire of vocalizations.
Just this past week, she added two skills.
She discovered that she likes to blow raspberries! Sometimes she just blows without the raspberries~
I’m not going to tell you about the other skill yet! It is exciting enough to deserve a post of its own, complete with a video demonstration!
We have learned to understand her body language and facial expressions.
When she’s especially happy about something, she has a sweet look~
This face makes me laugh! It means, “I’m feeling mellow. Everything’s cool.” [The food in her teeth means, "I don't chew my food at all." haha!]
Katie is generally cheerful, and isn’t easily disgruntled until after suppertime. But she can be persuaded out of an ill humor with minimal difficulty. She rarely chews on her wrist or clicks her hip joints in distress, as she used to do regularly. She has learned to look at us and complain instead.
“I have an opinion about this, and it is not good!”
She gets bored easily now, and doesn’t tolerate boredom well.
“Tra la la. This is so boring.”
And that is a healthy sign for Katie! It is impossible to picture the new Katie lying alone in bed all day. She would never stand for that now! She is curious and loves to be right in the middle of the activity!
Katie exploring buttons. Is this a choking hazard?
We want Katie to put things into her mouth, but that’s pretty far in her future. The development of fine motor skills is very dependent on core strength and arm strength. We won’t expect to see strength and coordination with Katie’s fine motor skills until she’s a good bit further advanced with her gross motor skills.
In the beginning, she couldn’t stand to have any pressure put on her hands, light or firm. Objects within her reach tended to be seen as a challenge, and therefore just irritated her. She still rarely grasps anything (except her spoon!), and when she does, it is nearly always to push the object out of her way. She tends to drop items from her grasp quickly, and her grasp is weak. Even her purposeful release is not normal–she shakes her hand back and forth to help the item work loose from her grasp.
When Katie began showing curiosity about objects (while we were still in CHOP and during the early days at home), she would explore them by patting them with the back of her hand. You may remember the video of Katie activating her singing turtle by batting at it uncontrollably with the back of her hand. We were nonetheless proud of her for actually interacting with a toy and figuring out the cause-and-effect!
She has progressed from there to being willing to pat or weakly push items in order to feel them. Her other motivation for touching things is to make noise with them, as she did with the tube she was rolling around on the floor, or the dryer ball on her seat tray, or one of her battery-operated noise-making toys.
She increasingly tolerates me giving firm touch input to her hands, but still pushes away a light touch. This makes sense when you know that deep pressure or firm touch is soothing, while light touch triggers a fight-or-flight reaction.
The button photos show that she has made HUGE progress just to be curious enough to scoot over and pat at the buttons! It tells me she felt secure and happy. Then she kept it up because it rewarded her with a noise she liked.
Katie enjoys toys that make noise, and will shake a very lightweight, stuffed rattle for a short period of time, after we model it for her. She also mimics us when we pat something. The fact that she so often tries to mimic us is a very hopeful sign of her learning potential.
She loves a good challenge, but only when she feels safe and comfortable in her environment. Increasingly, as long as she hears the sound of our praise, and sees our joyous faces, she pushes herself to do that thing again, whatever it was.
Well, unless we ask her to support her own weight in an upright seated position! No amount of praise reconciles her to this task yet!
“Oh pleeeeeeze! Do I have to do this? Haven’t I made it perfectly clear I do not approve?” *sigh*
As is common for people with Down syndrome, her receptive language skills are far ahead of her expressive language skills. She demonstrates her understanding of many words I commonly use with her.
For instance, the word “outside,” stated several times, results in her turning her head to look out the window. If we repeat the word “light,” she turns to look at a light. When she hears “bed,” she turns to look at her crib. The phrase “Hi, (person’s name)!” results in her turning toward the person in front of us. She looks down when something drops and I say, “Uh-oh!”
[Thank you again, R, for this wonderful seat!]
Miss Julie tells me that I talk to Katie exactly as she would want me to. Miss Julie has been Verity’s speech therapist for several months now. She is sweet and easy to love. When I asked her what she charged for private therapy sessions, she told me that in her soul she couldn’t bring herself to charge us for Katie, so she is offering us her services for free! We praise God for this marvelous provision and for our new friend Miss Julie!!
So how do I talk to Katie?
I talk to her like she’s a nine-year-old child when she is keeping me company while I work. ”Katie, did you know we’re going to have some visitors this afternoon? They’re going to bring you a corner chair and you’re going to love it!”
I talk to her like she’s a toddler when I’m teaching her, using simple words and clear enunciation. ”Katie, that’s a vacuum cleaner. Vacuum cleaner. Vrooooooom! Vacuum cleaner!” Being a natural-born teacher, this is my usual way of speaking to her, and it’s why she recognizes so many words now.
I talk to her like she’s a baby when I’m loving her up.
“Precious little Katie-bird. Mama lovey-lovey-loves you.” *Mmmmmm, smooch, smooch, smooch*