Stable

Jackson had his tests at Seattle Children's hospital on Tuesday and Wednesday. Since this is our spring break, we got all the kids up at 5:30 am Tuesday and loaded the GT for the trip over the mountains to Seattle. Not one of the five kids felll back asleep, I asked for family together time and I was getting it, with a vengeance!! Sierra was car sick within the first 30 minutes.  We got checked in at the hospital and Carter and Zoe went to the sibling play room. Sierra and Sammi went with us to take Jackson to Neuropysch for his first tests. He was there from 9am until 12:45. During that time Michael took Carter on a special "date". Michael had discovered the Pacific Science Center had a special Star Wars exhibit and we had been telling Carter all about his special date with Dad for days.  When he found out what the "date" was he told me he was "way excited, like wohoo excited"!!  They went to the Pacific Science Center and Carter saw the thousands of items displayed from the making of all the Star Wars movies.  Meanwhile back at the hospital the girls got a reprieve from Grandma and Aunt Courtney.  They came and brought Avery, Adalynn, and Aftyn.  We (just the girls, not poor Jackson) all ate lunch at the hospital cafeteria.  Then those 8 left and I brought a plate of food back for Jax to eat while he finished up his testing.  He got done just in time to head to audiology for his BAER (brain stem auditory evoked response) test.  This test didn't go so well, not that Jackson's disease is worse it's just that it is the most quantitative tests our oncologists have, but in order for it to be a good "reading" and valid test Jax needs to be asleep for it.  I thought that would be no problem since we had gotten him up so early and he had endured nearly four hours of testing already that day.  But apparently he just couldn't get into a real sleep, they can tell that from the brain waves he produces.  He felt like he dozed off more than once but the test includes introducing sound in increasing volume and he just couldn't get into a real sleep.    We will now have to repeat this test in 3 months and give Jackson some atavan to help him sleep for it.  Tuesday night we let the kids swim at the hotel for a couple of hours and then all went out to eat at Johnny Rockets, the waiter was great with the kids and since Zoe and Avery didn't get into a fist fight I call dinner a success!!  After dinner we got everyone in Jammie's and settled watching cartoons and Jax and Sammi (Sierra assures me she was the only one doing any real babysitting!) graciously babysat while the adults slipped out to the U village shopping district which was 1 block from the hotel.  We bought necessary things like a poultry thermometer and cups with wrap around straws.  Jax and I took the shuttle from the hotel to the hospital Wed. morning.  Our MRI appointment was for the IV start at 9 am and MRI at 10.  I knew it was going to be one of "those" days when the IV wasn't even started until 10:15.  But after we were taken back and Jax got into a hospital gown they had us waiting in the hall for his MRI room to open up.   They brought out a tiny little kiddo who looked so injured, I'm guessing a car wreck and all tension from waiting almost 2 hours left.  Amazing what a little perspective can do for you.  I got to be in the room for Jackson's MRI.  It is freezing cold in there because the Magnets in the MRI tend to create a lot of heat---better for the machine to be in a cool room I guess.  Jax had to hold VERY still for about 45 minutes and be injected with dye half way through.  My ear plugs couldn't drown out all the noise from the MRI, that is one loud machine.  Michael and Carter picked Jax and I up after the MRI and we raced to Northtown to meet the family for lunch in the food court.  Then we took all of our kiddos and headed back to the hospital for Jackson's last two appointments.  We had a good appointment with his Endocrinologist, Dr. Taplin.  He took the time to explain to us alot about Jackson's pituitary gland and his future medical needs.  It doesn't seem to early to start planning for his eventual transition to Uof W which will probably be his hospital for his adult life.  I think Michael and I were both surprised to learn that Jackson will always have to have his hormone levels monitored, because with a damaged pituitary gland they can stop functioning properly at any point.  I though we were out of the woods with his thyroid and such because they were fine now, but apparently that isn't the case.  The thyroid hormone is easily replaced by medication so I won't borrow any trouble by worrying about that now.  Jax was very close to 5 feet 5 inches which means he grew 4 inches in the last year which is great!  We had a bone x-ray and hope that those results come back 18 to 24 months delayed so that he can hopefully grow another 3 to 4 inches before he has to stop the growth hormone shots.  Once your bone age is 16 most people don't get enough benefit to continue the HGH shots, and the insurance companies won't pay for it anymore.  The last appointment on Wednesday was in Oncology with Dr. Rebecca Johnson.  She did a great job validating Michael and I in our different opinions as to how Jackson in doing!  No easy task there!  She didn't have the results from the Neuropsych tests, BAER or MRI yet so those still have to be looked at.  Her exam should some very slight changes.  Not enough to alarm her but enough to make her order another BAER in 3 months and in her words "a possible trip to Houston if anything else goes south".  She could see what I saw in Jackson's speech.  His right side of his mouth isn't moving as much as the left side.  But overall she declared him still "stable" which is great news.  Everything is so slight that we are going to keep a close eye on things.  I just don't want to make the mistake I feel I made 2 1/2 years ago when I didn't realize that he had ND CNS LCH.  Actually had never even heard of ND CNS LCH.  She reassured us they won't let Jackson slip through the cracks and that we and they will be hyper diligent in his behalf.  All we can ask for.  We are reminded once again of our privileges here, in our little corner of the world---good medical care, good doctors and good family and friends who support and love our son.  It's real easy on days like today to count our many, many blessings.

 This hovercraft actually moves.  Michael said it's teathered down but it has high powered blowers that lift it off the ground then you can steer it.  All the pictures are blurry because Carter had it spinning good and fast.

                                                     Not Carter's father---Luke's father.

After the Star Wars exhibit they went through the rest of the science center.  Here Carter is kicking it in a dinosaur footprint.