While worshiping in church on Sunday, a song spoke to me about how no matter what our circumstances have been, God has been there. It’s so easy to coast through not realizing that each breath we take is planned. We are all so precious, no matter if we are abled or disabled.
The peace that only God can give continues to amaze me. I hate to think that it’s a denial of what the future may hold, but we continue to thank God every day for the joy that Jordan has brought to not only Randy and I, but to those around us.
It makes me think of a little girl we met during Jordan’s first yard-sale experience. We were walking down a sidewalk in Medina, when a little girl with Down syndrome came up and started talking to him. It wasn’t the fact that she had Down syndrome that made the moment special. It was the joy that she had as she walked away talking about him.
It’s the joy that Jordan brings when he gives you a long hard stare then pulls a wide-spread gummy grin. It’s the talking in the back seat until he falls asleep. It’s the staring at his daddy as he prays for our dinner. It’s the nose rubbing on my chest before he falls asleep. It’s his sweet breath on my face when I lean down to give him a kiss.
We are currently in limbo as we await our next Myelo clinic day on Nov. 17 at Akron Children’s Hospital. It’s so hard to say where our little man stands right now as far as functioning. To us he is doing very well. He has therapy 3 times a month. They give us suggestions on what to work on at home, to keep Jordan as far on the “typical” developmental scale as we can. So far he seems to be on track. His feet are still showing signs of being “floppy.” He continues to kick his legs showing us that they are working.
In terms of growth, our last visit to the pediatrician indicated that he is around the 75th percentile in height, weight, and head circumference. He’s been eating like a champ, and has proven he can sleep for at least 8 hours at night.
We do have questions for our visit with the Myelo team. They range from suggestions for exercises for his legs, how to go about starting him on solids, how Jordan’s bladder and bowels look, and other signs that might be of concern. We also want to know whether his being upset and crying affects his shunt function. We are anxious and excited to meet with our team of amazing doctors at Akron Children’s. Please pray for us as we come closer to the date.
Until then we will continue to enjoy what we do…lovin’ our little Peanut.
Read more about Megs and Randy’s journey of raising a child with spina bifida through her blog, Labor of Love.