Not long after we brought N home from the NICU he started having screaming fits. Not like colic. More like, “I-want-to-crawl-out-of-my-skin-I’m-in-so-much-pain” baby. The only correlation we could find is that after he relieved himself, he was a completely different – and happy – baby. But it is so hard for him to void himself. He retains urine for up to seven hours sometimes.
Yesterday was the highly anticipated appointment with the neurosurgeon, Dr. George. Like most things with N the decision to operate wasn’t obvious. What Dr. George sees on the MRI is some “fat in his filum.” From how I understand what he was saying there is fat at the base of his spinal cord that could be affecting how his nerves are working as it relates to bowel and bladder function. It could be. There are no guarantees that clipping this fatty filum will correct his pain. Since this surgery is fairly low risk, he’s willing to give it a try. Once he heard that N is failing his meds every three weeks or so, he said he wanted to operate.
Dr. George also confirmed what the dermatologist said about the strange bump on the back of his head. He said that it is how his brain grew in utero. If we were going to do anything about it, it would be merely for cosmetic reasons. We are not doing surgery for cosmetic reasons. Unfortunately he’s just going to have a strange patch of hair on the back of his head and we’ll deal with it. We do need to do a repeat MRI from time to time to make sure no cyst starts growing there. I am glad to have another doctor’s opinion on that strange spot.
We don’t have a surgery date set quite yet. It will probably happen sometime in the next couple of months. We still need to get clearance by pulmonology for his airway issues and cardiology for his heart malposition. I thought I was busy before. Just need to add a few more appointments to the calendar.
|Showing off his new PJs and slippers that he got for Valentine’s Day.
Look how skinny he is! He disappears when he turns sideways.
I also want to say that big brother has been amazing through all of this medical drama. Everyone one calls N special because of his special needs, but M is special in his own right. I completely broke down on Thursday at my moms group. I spend so much time grieving for my firstborn and everything he isn’t getting from me, won’t get from his brother, and how N’s needs will drastically affect M’s future. I have to remind myself that he isn’t me. I tend to project all of my own firstborn issues and personality onto him. He’s not nearly as sensitive and serious as I am. He doesn’t worry or over react the way I do. He has far more perseverance than I do. Part of this may be the fact that he’s four but it’s also because he has a different personality than me. That is a gift in his situation. He continues to show me that he’s doing well. My prayer is that N will mark M in a unique way. That he will ultimately be a better man because of him. I think he’s well on his way.
Remember my verse for 2014?
“Call to me and I will answer you and tell you great and unsearchable things you do not know.” Jeremiah 33:3
Fits perfectly here. It’s been the whole story of God revealing to us the next step in caring for our complicated and mysterious little N.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!