God has graced us with 2 amazing kiddos. I am overwhelmed by watching Jordan smother his little “Gabbi, Gi Gi” with hugs and kisses.
There isn’t a day that goes by that he doesn’t ask to hold his sister. Then looking at little Gabriella gaze at her hero as he demonstrates strength and courage from day to day causes me to pray that these times only increase with age.
I’ve always dreamed of having children but never in my wildest dream did I think that a sister would strengthen Jordan’s courage. We are still in the process of finding the source of Jordan’s discomfort. He states his back hurts daily.
We revisisted Akron Children’s for a shunt flow study to make sure that the shunt was working properly. As we looked into his scared little eyes while he was asked to stay still for his “picture,” I asked him if he wanted to see what I had in my pocket. Of course he said yes, and I told him it was a kiss from his sister. His face relaxed and a smile swept across his face, “AGAIN!!”
Blood work was then taken and he was anxiously awaiting to tell his sister how brave he was to have his finger pricked. My prayer is they continue to show love only siblings can show.
Our next step in the process was an MRI to look at his spinal cord and another CT scan of his abdomen to rule out something that may be in his organs. To be honest the radiation of CT scans isn’t something that I’m thrilled about. However, it’s a process of finding out how to help our little man’s quality of life.
We will never truly understand the kind of pain he may be facing day in and day out. We are beyond thankful for a team at the Myelo Clinic who is willing to take steps to assist our little man.
The scans showed that Jordan has a tethered cord and a pocket of fluid by the spinal cord. This is common with spina bifida, it just depends on if it’s causing problems.
Along with Dr. Hudgins and his physician assistant Holly, we decided to watch instead of diving right into another surgery.
The CT scan also showed there was a back up in his bowel – another symptom that comes with having a neurogenic bowel. We’ve resorted to some medications to help keep our little man “regular.” We have seen some improvement with decreased back pain since.
I’ve found my anxiety about Jordan’s aches and pains have increased since his shunt surgery in December. It’s so hard not to know what is Jordan’s personality, independent behavior, an ear infection throwing off his balance, or something that is more serious like a blocked shunt.
He’s had 2 ear infections since his ear tube fell out. We will be curious to find out if Dr. Milo will want to place another tube in when we visit him this month.
We continue to take each day at a time and appreciate kissing these little people good morning and good night. We also love listening to Gabriella coo at her brother and watching him kiss his little sister with a grin, “sister, my best freend.”