Christmas has always taken on a special meaning in our family. Of course, children give a different prospective as well. We have tried to bring the true meaning of Christmas in our home.
We participate in the process throughout the month to give our children the time together as a family, including riding in a wagon to cut down a tree, decorating the tree with our sentimental ornaments while sharing how they came to hang on our tree, baking cookies, taking pictures, sending and receiving cards, and listening to Christmas music.
Jordan has been our picture of what we feel Christmas should truly be about. Of course who knows what next year will bring. While selecting a tree, Randy and I were pretty excited. We have some friends who have a Christmas tree farm so we bundled up and ventured out, pulling the kiddos in a wagon to pick the year’s “perfect tree.”
It wasn’t long before we were having second thoughts on our perfect tree because of the 19 degree weather. Jordan was not impressed with the cold weather. We then brought the tree home to decorate.
As we shared the story behind each ornament, Jordan found playing with his sister more interesting.
Randy is the cookie baker in the family, and as I have to admit, he baked the cookies I took to a cookie exchange while I was attending a funeral for my great uncle in Tennessee. Needless to say, we had a lot of cookies in our home over the holidays.
We typically don’t give Jordan many sweets so he thought he was in cookie heaven. When I ask him if he’s the cookie monster, he boldly proclaims, “I not coooookie monster, I Jordan.”
Jordan and I were sitting at the counter eating breakfast listening to Christmas music. It wasn’t until one particular song started to play that he stopped what he was doing and started to sing. Each night while fading off to dream land, Jordan requested to hear “Happy Birthday Jesus, song. Please,” by the Brooklyn Tabernacle Choir.
We were surprised to find that he wasn’t interested in presents. Not only did he not disturb the gifts under the tree prior to Christmas morning, he had 4 gifts left on Dec. 26. Reflecting back, we see that for now Jordan seems to get what the season is about: family, food and faith.
Over the past month or so Jordan has been waking up crying about an hour after he goes to bed. We weren’t sure how to react. Once we checked on him he didn’t want to go to bed alone. We weren’t sure if he was having bad dreams or if it was just becoming a new routine for him.
I researched 2 year olds waking up upset and crying in the middle of the night. I found night terrors may be what we were facing. The advice was not to disturb him. So there were a few times we let him cry himself back to sleep.
Early Christmas morning when most children were probably anticipating getting up to open presents, Jordan woke up crying and saying his back hurt. This was another symptom he had been telling us about for a couple of weeks.
Our concerns grew enough that we were going to take him to the ER. His back and stomach felt tight as he winced in pain. After some Tylenol, the pain seemed to subside. The next night the episode happened again.
Thursday morning I called Shannon Leslie, our Myelo Clinic coordinator, to get her thoughts on Jordan to see if he may be experiencing tethered cord. This is a concern with the diagnosis of spina bifida.
Shannon called me back less than an hour after she spoke with Dr. Hudgins, Jordan’s neurosurgeon. He was not only concerned about the possibility of a tethered cord, but they wanted to rule out something that may be happening with Jordan’s shunt.
My mom and I headed to Akron Children’s ER to have a CT scan and X-ray taken of Jordan’s shunt. They were concerned the shunt that was placed 4 days after Jordan was born was blocked, causing his spinal fluid to build around his brain. To be honest, I felt it was a just-in-case visit and we would be home in a couple of hours.
As Jordan sat in the room talking about being at “Doctor’s House,” my heart sank when the nurse peaked her head into our room asking when the last time Jordan had eaten or drank something. We truly feel that God orchestrated each event for Jordan to have his shunt revised because Dr. Hudgins was already in the operating room prior to Jordan coming in for another shunt revision.
We arrived around 11:30 a.m. and he was in the operating room around 2 p.m. The surgery was a success. It provided a route for the fluid to flow from his ventricle to his belly. I’m not sure anyone would have predicted these events.
He wasn’t showing us the signs of his shunt being blocked, such as vomiting or being lethargic. He’s been a happy, crazy little boy. Although it’s been a rough week watching our little man recover – and we’ve been scared at times to the point we went in for another CT scan because of his continued headaches and back pain – we are so thankful for Dr. Hudgins, Dr. Chen and Shannon Leslie for their careful eye and compassion of their patients and families.
In fact, Dr. Hudgins is one of Jordan’s TV and real live heroes. While watching the Ohio State/Michigan football game, the Dr. Hudgins/Mackenzie commercial came on. We were explaining to Jordan that Dr. Hudgins was on. He requested to watch it at least 4 times.
When we finally distracted him enough to continue the game, he came back saying, “I watch Dr. Hoogins.” Before his surgery Jordan didn’t say a lot while Dr. Hudgins was there, but when he walked away he looked at me and smiled, “Dr. Hudgins!!”
So as we continue the journey with Jordan, we will celebrate this holiday season with thankful hearts for sending us each member of our medical team and Jordan’s favorite partner in crime, Gabriella Grace.
Read more about Megs and Randy’s journey of raising a child with spina bifida through her blog, Labor of Love.