Bailey's journey so far...

Bailey is my happy-go-lucky eight year old son. He is always on the move and he loves to be outside working or playing with his cars and diggers. About three years ago he started having incontinence problems. It was around the same time that we had just moved and he had started Kindergarten. No matter what people say, I will never forgive myself for disciplining him for having accidents. Telling him that he "knew better" or "why can't you stop playing long enough to use the bathroom"? But we all felt like it was a stage or rebellious period he was going through. This went on for a year. Then at his yearly check-up, I mentioned to the doctor about this "rebellious stage". Five minutes later Bailey was having x-rays of his abdomen. This showed that his bowels were full from the top of his small intestines to the bottom of the large intestines. The doctor explained a few reasons of why this was, but along with a growth spurt that Bailey had, she suspected that he had a "tethered spinal cord".
After numerous and evasive testing of his bowels and bladder, other specialists concluded that though they couldn't "see" the tethered cord on MRI's, and the measurements of his bladder showed that he could only hold one third that of a normal child, he should go see a pediatric neurosurgeon.
After seeing the neurosurgeon a few times, we decided to go ahead with the spinal surgery. Through all of this Bailey was talked to as a person and NOT a patient or number. He was asked what he thought about all of this and he was even explained to about the procedure. Bailey asked questions and the doctor answered him in English terms :-) They have become good buddies.
Bailey's surgery was scheduled for Dec. 3rd 2007. Then he was scheduled to have a C/T scan a week before the surgery for precautionary measures and to see the levels of spinal fluid in the brain and spin..................
I will never forget that phone call.
The next day after the C/T, the Dr. office called. They wanted us to come in the next day. They had found a mass in Bailey's brain..........
That night was the worst Hell I could ever think of.
Greg and I held each other and prayed. We prayed and cried most of the night. I wanted so bad to hold Bailey and rock him all night, but I didn't disturb him. Instead I just watched him sleep. At the Dr. the next day, I put on my most brave face and held Bailey's hand as the Dr. explained everything to us about what they had found.
The mass was a cyst. An area in the brain that was filling with fluid and that fluid had nowhere to go. Many people have these all their lives and never know. But for Bailey, the cause of alarm was the size. A tennis ball size cyst in the left temporal lobe was pushing on Bailey's brain and caused the mid-line to shift. It also caused a bulge in the scull, the optical nerve to shift and his eye to droop. The Dr. was surprised it hadn't caused a grand maul seizure.
Now the spinal surgery was out until the cyst was taken care of. The Dr. told us that if we did the spinal first it would have caused posible brain damage. He said "It's like opening the wrong valve. Part of the brain would be sucked down into the spine."
Now I look at the tethered cord as a blessing in disguise. We thank you LORD. Had we not found it, then we wouldn't have found the cyst. I know my GOD works in myserious ways.
We now have a tradition that Bailey loves. On the night before surgery, he gets to pick any resturant to go eat at around ten o'clock. This means he gets to stay up late and that's cool!!
Bailey's surgery went well. the Dr. said that the brain was under a tremendous amount of pressure.
I've been so proud of my little man for coming through this shinning. That was until I saw what kind of paitient he was. Maybe I bragged too much...I don't know. My "little man" was being stubborn. He refused to tell us if he was in pain because he didn't want any medicine. I've never seen him so mean before. So agitated and ugly. So instead of the nurses asking him about the pain, they would ask me. And watching his body language I could tell. Recovery was hard. Instead of a few days Bailey ended up staying seven days in the hospital. The shunt that he had going from his brain down to his abdomon, just under the skin, was causing him to vomit. Every time the OTs got him out of bed, he'd get sick. Finally the valve on the shunt was adjusted to a lower setting, and the next time the OT got him out of bed, he didn't get sick...finally we came home.
My mother, bless her soul. She got the family, my two other children and my friends to come to my house and decorated it for Christmas. Normally nothing gets by me, but that day I was floored. All I could do was cry. She had taken care of everything. Now all I had to do was take care of Bailey and not worry about anything. That Christmas break, out of the goodness of her heart, Bailey's first grade teacher came and tutored him a few times a week. She will always have a special place in my heart.
With that surgery under our belts, it was then time for the spinal surgery. It was scheduled for June 2008. That one seemed like a breeze compared to the first one. Bailey felt the same. Four days post-op, and still on muscle relaxers, he was tring to run out side with the neighbor hood kids!! AHHHH! I couldn't hold him down.
Bailey still has many hurddles to jump. We have recently found that he has memory loss in long term and short term, he needs vision therapy, and he has concentration issues. He is now in OT and Speech therapy, but unfortunatly with all the medical bills we have accumulated, we can't aford to do vision therapy. Hopefully sometime soon we will.
I thank GOD for blessing me with three most wonderful children, and also for humbling me and showing me that HE is at work in everything around us.