Hurricaine Ike

The effects of Hurricaine Ike has now reached Ithaca, Ny. No, not rain or wind but the reality that we will not be visiting Houston next week. My family was suprised to find that they were one of the firsts to get their power back. Everything was right on track for our trip. Then today a transformer blew because their neighbors allowed their bamboo to overgrow and it touched the transformer. Because of this 10 houses lost power, my parent's house included. There are still millions of people without power in Houston so there is a long list of areas to restore power. They are trying to service grids with the greatest amount of people first. Because they had thier power restored and now there are only 10 houses without power they are last on the list. Their power company is estimating 2-3 weeks before they can get their power restored. We were supposed to go down a week from tomorrow. This is such an upsetting turn of events. We were really looking forward to our visit. My parents haven't seen Jack since July and they wereVery excited to see him walk for the first time. The video just doesn't do it justice. We are hoping the airlines will be able to reschedule our flight. If not, I don't know what we'll do. If Jack wasn't so medically fragile we would go down anyway but he requires power to be able to use his pump, his nebulizer, and charge his suction pump. All things needed to save his life. I'm praying for a miracle.

Preparing for a Party

Wow, what a week we have ahead of us. Tomorrow we have 3 therapies and an appointment with the dietician. Tuesday we will be in Rochester all day for pulmonology. Wednesday we have 3 therapies again and then Thursday we are back in Rochester picking up Philip's mom. During this time I'm supposed to prepare everything for Jack's birthday party on Saturday. I'm busy busy busy!!! I'm starting to work on Jack's year 2 montage. I hope to get it done by his birthday but if not I will post it as soon as I can.

Blended Diet

We've made some significant changes to Jack's diet! He is almost completely off formula!! We are now giving him real foor blended up through the tube. Anything Philip and I would eat now Jack can eat too! It is such a simple concept but the doctors are so against it. Our pediatrician knows me so well that he agreed to help me through it because he knew that if he disagreed with me I'd still do it anyway. He is now interested in learning more about it. Jack's health has significantly improved since starting real food. We started by adding some applesauce to his formula and over the last 2 months we have transitioned the formula out and now he is on all food during the day. He still gets some formula at night but we have significantly decreased it and it won't be long before it is gone altogether. We've now gotten to the point where we had to purchase a commercial grade blender to get the mixture smooth enough to go through the tube. Luckily for us, the company offers a medical discount for tube fed children. The blender still cost over $300 but now we can make appropriate meals for Jack.

I've been keeping myself busy cooking and freezing all sorts of yummy meals for Jack. They are so delicious that I want to eat them! Right now Philip and I joke that Jack eats better than we do! Just yesterday I made him some fruit bars that had apples, blueberries, cranberries, carrots, and oats. Then I made some potato, spinach, leek puree, and some pasta stars with tomatoes and cheese. It was so much fun!

I really think that for the first time in his life he truly feels food. It has to feel so much better having a full belly of food and not liquid.