(Miss J and her two fabulous host brothers...)------------------------------------
It was eleven weeks ago, today, that our family woke up to a little princess sleeping in the room next door. I expected there would be an adjustment period, especially going from 78 degrees in the mountains of a tropical island to 14 degrees and multiple feet of snow in Michigan. In addition to the change in weather, Jerrensia woke up to a new home, room, bed, blankets, toys, kids, grown ups, sounds, smells, food, car seat, schedules, music lessons and gymnastics (for her brothers), school drop offs and pick ups, doctors, physical therapy, occupational therapy, x-rays, casts, cast removal, more casts, surgery, MRI, audiologists, ophthalmologists, and a host of other things. This is a lot to embrace for a kid. I’m not going to lie, I expected this to be extremely traumatic for her. By the grace of God, I was absolutely wrong. Getting in late the night before, the first glimpse Jerrensia had of her new world was when she woke up in her ridiculously wonderful fuchsia bedroom the next morning. Our boys, eight and four years old, could not wait to meet her! We had been praying for this sweet girl as a family since we met her ten months earlier. The part that is still so surreal to me, is that she woke up and seemed to know that she was ours and we were hers (in a manner of speaking). There was no transition period. It was like she had always been here. Everything just fit.
Since she’s been here, she’s learned how to use a spoon and fork, drink from a sippy cup, say ‘mama,’ ‘dada,’ ‘brah’ (short for brother), use sign language for ‘food’ and ‘more,’ and scoot around on her toddler wheelchair. She loves to sing and dance, climb on her brothers who are absolutely smitten with her (the four year old calls her Miss Princess), and play with her Little People Princesses in her brother’s Batman Bat Cave. She’s also been known to play with Batman in the Princess Castle. Fortunately, the boys don’t mind. They’re just as content to play with the princesses alongside Batman.
We jumped right into physical and occupational therapy to begin to assess her abilities, and what areas we needed to focus on. Soon after, she saw the pediatric orthopedic surgeon who diagnosed her with a rare birth defect called Caudal Regression Syndrome. She doesn’t fit all the characteristics but her joints can be described as Arthrogrypotic. Many of them just never fully developed. Current known issues: her hips are dislocated, her knee caps never developed, there is webbing behind her knees preventing her from straightening her legs, toes and ankles are underdeveloped, she has little muscle control, and bilateral club feet with the severe contractions in the middle of her feet. Right now, we’re focusing on her feet and getting them to a plantable grade as well as working on stretching her knees to try and get them as straight as possible.
Next step would be having the prosthetics department build her a standing frame that will help her to become weight bearing on her feet. If she does have muscles in addition to the isolated ones she’s shown us, that will help them to grow and become strong for additional mobility. She just had the Tenotomy done last week which released her Achilles tendon, allowing her ankles to flex, and is in another set of casts which will continue to be replaced every couple of weeks for an indefinite amount of time.
The MRI was done yesterday to begin to investigate some of the neurological issues we’re noticing with the right side of her face. This is still the very beginning of a long road of healing for Jerrensia. She has been very brave with all the appointments but she does have a high level of stranger anxiety that, so far, only the physical therapist and one of her sedation nurses have been able to break through. However, we could not ask for a better medical team to surround her. I’m truly brought to tears by their generosity and the high level of care they have given Jerrensia and to our family throughout this process. Our doctors have the wisdom that so many prayed for and as I mentioned earlier, she’s adjusted so well to life in our home.
But the path from a wheelchair prognosis to one that would include walking is a long and very difficult one, and right now, she doesn’t understand any of it. So our largest prayer request would be for her peace in the medical process, and of course, continued healing. Thank you to all of you who have kept this precious girl in your prayers!
