Learning to make lemonade....

Waiting in CT...gotta love the Georgia boots

Does it make me a bad mom, that I left my
baby in his PJs and didn't dress him until after
Jacob's first appt?

It's now 4:00 pm on Tuesday afternoon and Jacob is all done at ol' Building 10 (that's the Clinical Center) for the day!

Today went by pretty fast. Jacob's first appointment was a CT scan of his adrenal glands and surrounding area. I took Jacob to pediatric oncology at 7:45 am and told Mrs. Kim, our favorite RN, that he needed an IV for his 8:00 CT. We could've just went to CT and they would have placed his IV, but Jacob is very comfortable in peds and the nurses there are extremely nice... and good with needles. Jacob's lidocane had been on the inside of his left elbow for at least an hour, but the press-n-seal wasn't staying in place, and, once again, he was worried. I don't blame him. IVs hurt and the anticipation of being "stuck" for whatever reason is the worst part. Well, sometimes. Jacob has been through a lot of pain in the past with IVs. I really love him having the port, but CT contrast is administered too fast for his particular port. Mrs. Kim got his IV in lightning fast and pain-free. We were at CT by 8:00 am. They checked Jacob in and gave him blue paper pants and a shirt to wear. An hour later, I was a bit annoyed that so many people had come and gone and Jacob, who wasn't allowed to eat before his scan, was still waiting to be scanned. I asked one of the techs why Jacob hadn't been called back. She said they had to take inpatients first... The next split-second was one of those reflective moments where you recall everything you've just seen in order to respond to something (particularly something you may not have agreed with)... I know for a fact that at least six people came in street clothes, changed into blue paper attire and went for their pictures. The one inpatient I did see was on a stretcher in front of us, puking and moaning the whole time. They could of taken him on back and I wouldn't have mind waiting at all. I decided not to say anything at this point. Twenty minutes after I spoke with the tech, Jacob must have magically been next because they called him back. When he was getting imaged, I went to security and got our new badges (good for the next year!). Jacob's scan only took about twenty minutes. He said he remembered the cool radiology tech from his brain CT a year ago and that the contrast burned his arm. :( He hates how it makes you feel (hot and flushed for you CT virgins) as it runs through your body too. Jacob said there is a machine now that pushes out the contrast instead of a tech coming in to do it. That's different. Jacob was happy to eat breakfast. His next appointment wasn't until 1:00 but we went up to OP5 to see if Jacob could have his hearing test done early. A definite no-go. They were slammed.

Our next few hours at the CI was nice. I got our dirty clothes from the last few days washed and in the dryer. Gavin and I played with the big light bright and played in the big playroom, which was very clean and organized today. We ate lunch and went back to clinic. During Jacob's audiogram and ABR testing, I talked with a mom whose daughter is 14 and who are here for the first time as part of the NF2 study. She was the same mom who helped Jacob put Gavin's stroller on the shuttle at DCA and tried to help me with the car seat. Very glad I got to redeem what must've been an uninspiring first impression. They are from Chicago and I enjoyed talking with her very much. They even brought grandma with them! Jacob's testing took two hours and Chris said nothing in Jacob's hearing has really changed. Great news! One less thing for me to worry about right now! Whew! Chris was in a hurry to be some where so he said he would talk with me more tomorrow. He also said he wasn't sure if they would do balance testing now that Jacob has had Avastin treatment. The Avastin takes the "natural" out of the "natural history study." I sure wish I knew before we get up early to be there for testing tomorrow...

Tonight should be a nice night even though we won't make it to the Caps game. My dear friend, Laura, and her beautiful daughter Ali, are flying in from Chicago. Laura and I have been corresponding for the last four years, but have never met. Jacob and Ali share the same birth month and year and have texted some, so it will be nice for them to finally meet. I could never express in words exactly how much Laura's friendship has meant to me over the years. I am beyond excited that I get to spend a few hours with her this evening! Sure hope G will be good for me. He's had a pretty good day.

Gavin was crushed when we came out of the clinic today and all the snow had melted. We found a tiny pile left on the sidewalk and he and Jacob played in it for a minute. Later Gavin dug through the M&M treasure chest at the front door and found some little junk to entertain him. It's amazing what a little wind-up alligator and a tub of slim can do for a toddler! Thank you, treasure chest! G is really tired and his snot has gotten thicker and more colored. Yuck. He refused to go to sleep last night until 12:30 am, then up at 7:00 and no nap. Fingers crossed for an early night.

Jacob is in the game room, playing pool with a new friend. I'm sure he will be on the XBox soon and he said he is very happy to just chill this evening. Me too...

My biggest complaint of the day is coming back to the CI and finding our clean laundry on top of the dryers. It would've only been left in the dryer for an hour after finishing and there are several other dryers in that laundry room, not to mention four other wings with laundry rooms fully equipped with washers and dryers! I have never taken anyone's laundry out of a machine. I just come back later or go to another wing. I don't know why other people don't think like this... I was extremely bothered that someone touched my clothes. I don't even let my loving husband touch my laundry! Oh well. In the big picture, it's really not that big of a deal :)

Gavin's favorite for dinner tonight - spaghetti.

Tomorrow - Three hour Vestibular (balance) testing, which I really hope they do since Jacob is having issues with his balance. Then an appt with the ENT, Dr. Kim and the eye clinic in the afternoon.

I just want to say a BIG Thank you again to all of you following Jacob's journey. Your prayers and support mean so much to us. Every email, FB note and text I've received brightens my day and reminds me that our family is so blessed. (Wiping tears)
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It's 10:00 pm and I am just now getting to post what I started earlier. Prayers for Laura and Ali who have had a five hour delay in Chicago and are just now flying to DC. Did you know only smaller planes are allowed to land at DCA after 10:00 pm due to a noise restrictions? Only in DC. Guess the rest of us in the US are just peanuts.

I am a happy mama. My boys had a great night. Jacob met some older dudes and played street hockey. Jacob's first rodeo and he loved it. We spent some time petting Violet, the CI's big lovable lab. (I miss you so much Grissom!) Gavin spent thirty minutes in the craft room with some other children and volunteers while I cooked dinner. He made me a picture and was very well behaved I was told. Jacob got a seated chair massage in the reflection room. Really sorry I missed that! The boys threw blocks and wrestled in the soft cube playroom. (That's what G calls it.) We ate kettle corn and played bingo. Gavin won a truck :) He is sleeping peacefully now and his nose breathing sounds pretty good after a hot shower and a lot of nose blowing. Oh how I hope he will sleep until 7:00 am tomorrow. Jacob is out socializing and I am trying to stomach the State of Union address. I will be staying awake late to at least give Laura and Ali a big hug!!

Till tomorrow......