This past fall, Claire stopped walking. She never crawled as a baby, so when she stopped walking, she stopped moving. When she stopped moving, her verbal skills regressed. She became a sitting, crying, 21-month-old mess and I had no idea what to do with her. My sister Tabitha, who is an Occupational Therapist, brought her son up one weekend to visit. Colt is seven months younger than Claire and was literally running circles around her. Tab was concerned about various things and recommended that I take Claire to the pediatrician ASAP.
At this point, in November, Claire could walk on stiff shaky legs only after lunch. She absolutely did not move in the mornings or after naps or after being in her car seat. It took her a long time get warmed up and use gross motor skills. She ate poorly and didn’t drink much at all. It was scary and sad and worrisome.
Our pediatrician sent us straight to a bone and joint specialist and to Cook Children’s Hospital in Fort Worth to see a neurologist. We were put on the cancellation list and hoping to get in by the end of the year. They called one afternoon the week before Christmas while I was grocery shopping in Dalhart and said they had an opening for 9:00 the following morning. We went home, unloaded groceries, loaded our luggage and Christmas gifts, and rolled into Fort Worth at 3:30 in the morning. Thank you, Serial podcast, for keeping us awake on that 7 hour drive (did Adnan do it???).
Matt and I spent the day at the hospital, holding our little blonde baby while they took vials of blood and scheduled all kinds of tests. At this point, the bulleted list of symptoms we discussed with the neurologist was ten points long. Just a few of these included overall weakness, dragging the left side, and super stiff legs that wouldn’t straighten out. The doctor noticed several more. Never ever Google your child’s symptoms.
That afternoon, we were sent to the department at Cook’s specializing in orthotics, and fitted for ankle-foot orthos Claire would need to wear every day, indefinitely. At that office, Claire literally did not/could not walk or crawl. She cried the entire visit. We set up therapy back home and expected to be picked up for twice weekly sessions in Dalhart.
In the midst of all these appointments and the anxiety that accompanies a kid with health issues and a very pregnant mom, I emailed our friends and family asking for specific prayers for Claire. If you don’t have prayer warriors to call on during times like these, you need to get some. My closest friends and their moms are some of these people. Our aunts and cousins are some of these people. They are faithful to pray and God is faithful to listen. It is an absolute privilege to be prayed for by each of them.
A week or so after our initial visit to Cook’s, at the end of December, we went back to pick up Claire’s new “boots.” We received word that all blood work was in the normal range. We strapped those orthotics on her feet and started therapy. The goals in therapy were specific: learn to stand up without pushing off her knees like an old lady, walk by picking her feet up off the ground, build enough upper body strength to crawl, use her hands to push together and take apart blocks, and use both hands equally.
Speaking of old ladies: one day in Carter’s during this time, we were Christmas shopping and Claire was literally lying on the floor of the store and could not get up. A sweet little grandma said to me, “She looks just like I do trying to get off the floor.” [Insert fake smiley emoticon here.] Also, don’t let your kids roll around on the floor in public places, ick.
It was a long fall and winter around here. It’s not that fun to take a kid to therapy 40 miles away with two other kids, one of which is a newborn. We’ve scheduled and rescheduled appointments in Fort Worth, just a short jaunt across the state of Texas. We’ve been approved by insurance for genetic testing but have debated, for several reasons, undergoing it and the brain MRI that has been ordered.
However. During all of this therapy and driving hundreds of miles and paying numerous medical bills, we have witnessed the most amazing healing.
Yesterday, May 20, Claire was discharged from Occupational and Physical Therapy! She has met her monthly goals. She can go up the stairs and sit on her knees and just this week, can climb on the sofa. She does not drag her left foot. She gets herself out of bed and runs around the house in the morning, even before we put her “boots” on! She is talking so much more not that we can understand yet, but she is definitely making noise other than crying. She is keeping up with her brother and that is a feat!
From our list of symptoms in December, I think one is still fully apparent now. We have appointments with different doctors scheduled over the course of this year, but I’m hoping there won’t be much to talk about. This girl is growing and running and dancing and stomping in puddles. She is bossing everyone around and poking her little sister in the eye and getting spankings. She is two years old and acts like it. We are so grateful! And if you are one of those praying for Claire the past several months – thank you! It means so much and we are so blessed by you.