Monday, May 25, 2009


The rest of our stay in Orlando continued to be just wonderful. We had a great time in Animal Kingdom. I would definitely recommend the safari, if you ever go to the park. You do get a glimpse of being on a real safari! On Saturday, it was also warm enough for us to try out the pool where we stay, and Sarah went fishing again. At night, there was a surprise birthday party for Mayor Clayton to all the kids' excitement. Did I also mention that both kids went horseback riding in the morning? Jacob loves horses, so no surprise that this was his favorite thing of the day.
We decided to do a quick visit at Sea World before heading to the airport yesterday. We got to see the shamu show, and it was probably the top favorite attraction for all of us. Jacob loved watching the enormous killer whales doing their tricks, jumps and acrobatics with their trainers. We also got to feed the dolphins, and it was neat to be so close up front with them.
The flight home was not fun...Due to severe thunderstorms in the Denver area, our airplane wasn't allowed to land. We ended up in Wichita in Kansas to get more gas, and hoping to get back home. After a 7 hours flight we finally landed in Denver. We had absolutely no more formula for Jacob, and was pretty happy that we at least made it home. We didn't bring any extra formula for him, and that is now a lesson learned. If we do get stuck, there is no place we can purchase his food, and this is the only formula we know he actually tolerates, so lesson learned for both Joakim and me.
Jacob got exactly 6 days off in order to make his special trip. This morning, he did wake up with high fever, cough, and extreme movements. Joakim took him to the ER, and he was seizing in the car to the ER. We're waiting for the blood culture to give us some more results some time tomorrow, but they are already starting him on 2 different antibiotics through the medical port. The fear is that there is yet another line infection. Since it's a holiday no one is really making any decisions, but I know that we will be faced with removing the port if there is indeed another line infection. Only time can tell. We also found out on Friday that his metabolic doctor wants to go ahead with a liver biopsy, so maybe we at least can do both at the same time. The liver biopsy would be a way to possibly determine what type of mitochondrial disorder Jacob has. Certain types of the disorder only show up in a liver sample.
This afternoon they cathered him for possible urinary tract infection, and did a nasal swab for possible nasal infection. It was hard to see Jacob hurting again after having had so much fun in the past week. I almost started thinking that things might go back to normal a little bit again, but today brought me back to our regular routine. It takes only 30 seconds to realize that you will be canceling all your plans, erasing whatever you had been scheduling on your calendar. It takes 60 seconds to understand that even if you'd been fooled into thinking so, you do not have an ordinarly life. Having said that though, I am not sure I would like to live any other life than this one right now. It's just too much love here.
Happy Memorial Day! - Maria.
P.S. I have uploaded some pictures from the trip!

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