Hmmmm, such a little Verity and so much to tell! Where should I begin?
One-year well-child check-up.
A couple of weeks before Verity’s big birthday, my mommy sensors began to pick up some troubling signals. She was not her usual responsive self. It was increasingly difficult to get her to focus, she seemed to be forgetting a lot of what she used to know, she started sleeping for longer and longer periods of time, and when she was awake, she was drowsy. It was more difficult to get her to smile for pictures.
Of course my mind went to all the scenarios that could cause these symptoms, including autism and hypothyroidism. I even questioned–is this what we could expect to see with Down syndrome as she grew older? Wrong call, mama! Cross that one off your list!
So what did her check-up reveal?
She had bloodwork drawn. Dr. Strauss is in complete agreement with our determination to be extra proactive with Verity’s preventative care, and regular bloodwork is a part of that.
Turns out that there is a reason after all for the symptoms we were seeing. She was experiencing borderline hypothyroidism. A tendency to hypothyroidism is relatively common in people with Down syndrome. It is also easily managed, but has grave consequences when it is left untreated. If you read through this list of symptoms, you may be startled to see how unmanaged hypothyroidism has contributed to many characteristics commonly associated with Down syndrome. It is so sad to think of how many children have been damaged by going undiagnosed and untreated when it has such a simple remedy!
Dr. Strauss immediately started her on a 25 mcg daily dose of levothyroxine, and within a week, we had our responsive little Verity-person back! What a relief! She will go back for follow-up bloodwork at the end of August.
Her bloodwork also showed that her vitamin D levels were just under the borderline, so we increased her daily dosage from 1000 IU to 2000 IU. Minutes before we received these results, I had read the new recommendation that all people with Down syndrome take 2000 IU of vitamin D daily. When I asked Dr. Strauss for his thoughts on this, he agreed that we should double her dose.
At her check-up, Dr. Strauss also recommended we take Verity back to a pediatric ophthalmologist, as her eyes would turn in slightly when she attempted to focus them on one object for a long period of time. Dr. Strauss also detected a slight nystagmus.
So yesterday Verity went to Dr. McManaway’s office.
Dr. McManaway came highly rated by a friend, and he did not disappoint us. He was fabulous with Verity, as was his staff, and he charged significantly less than the pediatric ophthalmologist who saw her last fall. We came back home with a diagnosis of accommodative esotropia, and a prescription for eyeglasses!
I knew from listening to other T21 moms that after almost one year of therapy, Verity’s therapists were going to test her, then compare her results with those of children without Down syndrome who are developing typically.
Only problem with that plan is this little rule I made that I will not compare her with children of her own age who do not have Down syndrome. Why would I? She does have Down syndrome!
It would be useful information for me to have if I wanted or needed to see how she compares to children of her age who are not facing the same hurdles. But I don’t.
On the principle of doing unto Verity as I would have others do unto me, I refuse to view her in terms of other peoples’ abilities.
When we got to evaluation time, Verity’s thyroid medicine had kicked in, and we had fun with her little tests.
And I haven’t the foggiest idea what her developmental age is in any category.
What I do know is that…prepare to be impressed…
…she chews semi-solid food. With her mouth closed. It’s the cutest thing to see! We don’t know for sure what her chewing actually does to the food by the time she swallows it, but she does move the food around in her mouth using her tongue like a very big girl.
[I am right-handed, but once in a while I eat with my left, just to show that I can. I’m clever that way.]
…she has very recently begun using the Three-Jaw Chuck, as Miss Marcia calls it. That’s a preliminary pincer grasp skill, and involves her thumb and the pointer and middle fingers. Not long ago she raked up her finger foods and crammed them into her mouth indelicately, as you see here.
[Mama? Where are your eyes?]
…since the time I took that picture, she has also decided that it’s fun to hold her HappyBaby puff delicately to her mouth and nibble small bites off it.
…since her evaluations, she has shown that she can drop blocks into a bucket in front of her. This is called purposeful release, and is a big milestone for her!
…she now turns the pages of her board books when we read to her. We think it’s so cute!
…she can say, “Hi.” Appropriately. When she wants to. It sounds like “eye,” but she is understood. “Hi, Daddy,” is a quick “I, De-de-de-de.”
…she does not like modern music. At Joseph’s piano recital earlier this month, she sparkled at all the pieces the students played, except for the two modern ones. Both times, shortly after the jarring discords assaulted our ears, she began signing emphatically, “All done, all done.” I’m with you, baby!
…she can jabber with inflection.
…if we fly her through the air with two hands under her trunk [Zoom], then quickly land her on a horizontal surface [Crash], she will put her hands down to brace herself, then hold herself up for several minutes while we support her hips. Slowly but surely, she’s getting stronger!
“Big girl, Verity! Yay! You are so strong to push, push, push up with your hands! Big girl!”
…when Miss Karen tested her, she gave Verity two small toys, then handed her a third one to see whether she would drop one of the others to grasp the new toy. Without missing a beat, Verity put one of her toys into her mouth, held it there, and reached out for the third toy. She did pass the test the second time Miss Karen tried it, but it wasn’t nearly as entertaining.
…when we place three favorite toys in front of her, spaced about six inches apart, and tell her which one to get, she does.
…she is getting closer to pulling up to stand! She’s gotten to her knees in her crib. This, my friends, is progress! Miss Karen, her physical therapist, is also pleased that she will go from sitting, to hands-and-knees (quadriped), to belly on her own with no prompting.
…she holds an object in one hand and manipulates it with the other.
I am definitely seeing the need for more help with her speech, in order to build on the skills she does have, and keep the good momentum going. Speech therapists are chronically in short supply, and it can be very difficult to get speech therapy.
At this point, it is clear to me that she has things she would say if she had more ability to communicate. She is very expressive, just not as much with speech as we think she is capable of learning. So in order to get more tools to help Verity, I am requesting some speech consults to get a foot in the door for future speech therapy.
The meaningful glance below was accompanied by a sleepy song, and means, “I do like avocado, and I don’t want to be rude, but I would rather be sleeping.”
[If you would wipe the avocado off my face, my meaningful glance would look more impressive.]
Pushing therapy too close to nap time magically transforms her into Miss Drama Queen. Ooooh yes.
A couple of weeks ago, she didn’t want to practice pushing up to sitting from her weaker left side. “One more time, Verity! Push, push, push! You can do it one more time! You can sit up, Verity!”
“YAY! Big girl, Verity! You did it! You sat up!” [All the hard work and pushing paid off. It’s now two weeks later, and she can sit up from her left side easily.]
Time for a fun break from the hard work! “Round and Round the Garden goes the teddy bear…”
“…one step, two steps, three steps, tickle under there!”
“Oooooooh, Daddy is home! I will go to him!”
He’s my favorite Daddy. “Da-da-da-da-da…”
Miss Marcia said that if it wasn’t for her diagnosis of Down syndrome, she wouldn’t qualify for services in a couple of categories, because she is doing so well in them.
Oh my hard-working little baby doll. Myum, myum, myummy sweet precious girl. We are so proud of you!
[Note for those of you who have asked about Peter and possible Lyme disease. We prayed that if he indeed had contracted it, that God would reveal it to us. Today, during his third bout of fever, he broke out in a secondary rash. Thank You, Lord! Our family doctor knows that we can identify it from experience, and called in a prescription for him.]