Within a week of moving we took a family vacation to Hawaii!!! When we got Zac's diagnosis and we learned that our time with him would be short, and that he would go down hill pretty fast, we knew we wanted to take one more trip to make some special memories.
Between the week of moving and Hawaii we decided to get Zac the NG-tube, which is the feeding tube that goes down his nose into his stomach. We wanted to have the knowledge of using it just-in-case Zac needed it while we were in Hawaii. We didn't want to take the risk of him not eating and getting dehydrated while we were there. We brought all of the equipment with us, but luckily we haven't had to use it. But Zac is still loosing weight and we are going in to get the G-tube on Monday the 13th, Zac's 2nd birthday.
Before we left for Hawaii, Zac was having a very hard time sitting on his own, and wasn't crawling at all, but after his vacation he was doing really well, sitting by himself, and crawling around a bunch. This week he is loosing those skills again, but it was nice to see him moving around, at least for a while.
We continue to enjoy our time with Zac, we are starting to figure out his care plan. At every doctor appointment they ask us about it. It is really hard to decide what measures to take to keep Zac alive. We also are going to be meeting with the mortuary and make funeral arrangements, we feel like it is going to be easier now, then after he passes. One thing is that my Dad is going to build Zac a casket. We know that quality of life is very important to us, so we will have to figure out where we think he has no quality of life. Ugh! I have been putting it off for a while because how do you decide when and at what point you let your child die? There are no rules or instructions, and the doctors just say, It's up to you...This will definitely be the most difficult part of this journey. One thing is for sure, every time Zac smiles, it makes you forget about his battle. Good thing he smiles a lot.
