Last night Manny and I left after dinner and stayed in Atlanta in a hotel. We had a nice time playing in the hotel room, hanging out at Publix and otherwise doing very little. I had a hard time getting him to sleep but he finally gave up around 10:45 PM.
I got up around 5:50 this morning and got everything packed up, woke up a very sleepy Manny, and headed to Scottish Rite hospital. I had to be at registration at 7 AM and that went smoothly. I was then sent to radiology where I filled out more paperwork and waited. A mom who was there with her son helped me navigate some of the paperwork. "You sound like you have experience with this," I said. She said that her son was 6 years old and had numerous MRIs. When she said that I noticed cafe au lait spots on his neck, as well as a bump under his shirt at his breastbone. "NF1?" I asked. She said yes. We didn't' get to talk any more as they were called back.
We didn't have to wait too long before we were sent to a "sedation" room. Manny was extremely unhappy about the blood pressure cuff, the O2 saturation sensor, and the gown. He was quietly fascinated, however, by the actual placing of the needle for the IV. After one vein blew in his left hand, it was on to the right hand. He stopped crying about the tourniquet long enough to sit in wide eyed silence while the actual sticking was done in both hands. Then horribleness ensued when they taped the little splint to his arm and taped his fingers to it. I was left for about 20 minutes with a hysterical thrashing baby. I pretty much used all of my strength to hold him down and to keep him from tearing the IV out with his teeth. I was actually grateful when they sedated him. I watched him go to sleep then left for a walk. About three hours later he was returned to the room on a stretcher and still sedated. He woke up just minutes later, groggily had some juice and potato chips, and we were sent home.
No results yet. The MRI will be sent to Dr. Reisner and we will have some results next week. Maybe. This was an MRI of the brain and spinal cord with contrast imaging.
I liked all of the staff at the hospital. Everyone was very friendly, something you don't find as much at "grown up" hospitals. I sat in the room with my earphones in playing with my iphone so that I couldn't hear the other disgruntled children. I don't know how the people who work there can stand it. Once again my trip to Children's, especially the neurosurgery area, makes me realize that, at least so far, we are lucky.
Jake stayed home with his dad and Granny. Steve's parents moved up here this past weekend and Elaine has already taken them off of my hands Tuesday morning so that I could work and stayed here last night so that Steve could go to work in Alpharetta this morning. She kept Jake until 4 PM today, which gave me a chance to straighten up the house and cook dinner when I got home. I am so amazingly grateful for her, because without her help in the past our only "guilt free" options were either for Steve to take a day off of work or for me to take Jake with me to the appointments. She has had so much fun with the kids that she is going to come get them tomorrow so that I can sew. I have my much anticipated debut at the Chattanooga Market on Sunday and her coming to help means that I can go to bed tonight and not stay up until 2 AM sewing. Yay! I don't think that she has spent a day without seeing the kids since she got here on Saturday. What an amazing blessing to our family to have this kind of love and support for us. Its so very good for the children too.
When I got home there was a mysterious box at the door. Some of those crazy Phishhookers have gone and sent us another care package. A giant box of crayons and coloring books and a toys-r-us gift certificate for the kids, yummy bath stuff for me, a copy of the Phish show in Asheville (the one we missed a few weeks ago.. isn't that cool?), and a six pack of rare out-of-season Bells Brewery Two Hearted Ale for Steve (I get one... too). Thanks so very very much for such a cool package. It came exactly at the right time.
Here's a video of Jake with his new crayons. Check out his new favorite word (I have NO idea who he learned THAT from) at the very end. Somehow when he obtains a habit it is already well-established before it begins... Oh well... I hope his teachers are understanding.
We are all happy to be back together as a family tonight. Jake is happily crayoning, Mom and Dad are going to have a beer, Manny is tired and laid back and playing in his squeaky shoes (a gift from me that I found in the hospital gift shop). Hopefully the news will come quickly and it will be good.
