A great feeding plan... so excited!

We have had such a wonderful week. I've wanted to blog so many times but have either been too busy or too exhausted!

On Tuesday, Samuel had a clinic visit with the mitochondrial doctor, Dr. K. We have wanted a long term feeding plan for Samuel for a VERY LONG time and he has not been well enough to really approach the topic. Well, he is now! We will be doing a barium swallow study in the near future to see if Samuel is able to safely swallow both thin and thick liquids. If he can get these things past his airway without aspiration, he will be allowed to EAT liquids! We can only do liquids because it has to be able to come out of his stomach into his ferrell bag. We know he doesn't move food from his stomach to his intestines easily, so this is not for nutrition, but just for oral satisfaction and for him to feel somewhat NORMAL!

Dreams of ice cream, soup, juice, thin pureed baby foods, yogurt, dissolvable candies, and milk may all come true soon!

Tuesday evening, our good friends, Ali and Alex, joined us for a slumber party. Lauren and Alex had a slumber party on the fouton and were quite the sight to see. Besides the two of them, there was also a CPAP machine, a feeding pump, an IV pump, and a ferrell bag sharing the bed. But, they were sound asleep before we even knew it!

On Thursday, we headed back to the hospital because the lab had a problem with some of the tubes we sent them on Tuesday and we had to redraw some labs. We finished quickly and met up with Ali, Alex, and Mimi (Ali's mom) for a quick trip to the zoo. We walked across the street to ride the train from the hospital to the zoo enterance and Ali and I had to convince the conductor that our children were in wheelchairs! Now, I know that our Kimba is like the Cadillac of wheelchairs and looks more like a stroller than a wheelchair, but the oxygen tank hanging off the side should have been a clue... along with all of the other tubing that strung out of Samuel and Alex's shirts. We finally convinced him, but it sure took a lot of talking. Ali's comment of "So do handicap children not get to ride the train" I guess got the point across. Samuel rode up front in the wheelchair car. He liked the train, but hated the horn, so we rode the entire way with his ears covered!

The zoo was fun. Samuel enjoyed it, but Alex is like a kid in a candy store while at the zoo! We almost ran from one animal to the next to get a look. After an hour, Samuel and I headed back to the train to return to our car. This trip was a bit easier, thankfully! We got Lauren from school and then made the trip to Pearland to the pediatrician to get both kids their H1N1 shots, which we are so very thankful for!

Today we finally got this weeks labs back and Samuel's labs are looking good. Nothing is too abnormal for him, so we are feeling good with how he's doing. He does have a sinus infection right now, but otherwise, he's doing great. Lauren's labs came back like I was suspicious they may. Her ammonia is high, as well as her pyruvate. She will start Arginine and I hope to see her fatigue improve as well as her irritability.

Please keep this family in your prayers. They are facing our worst nightmare right now as their little 3 year old boy, Gavin, will be going back home to our Father soon. He also has mito and has fought so hard. Please pray. http://www.gavinowens.com/

Missy