The hardest things.

These past couple weeks have been filled with emotion. We have been asked some very hard questions regarding Zac's care. They said we can be aggressive with his care, or do as little as we would feel like. Now that we have met with most of the specialist doctors, we decide if we want there involvement. My Pediatrician said that they can keep Zac alive for a long time living on machines. But Brett and I know that no matter what happens or how good of care he receives it won't change the fact that he has a terminal illness. There is no cure, there is no treatment.  We have decided that quality of life is more important than quantity. BUT I still am upset that we as Zac's parents have to make that decision. No parent should have to decide whether to let there kid live or die. It breaks my heart!

We also learned today that Zac is being classified as GM1 Type 1, and with the aggressiveness of the disease it makes more since. They have seen more of the physical features of Type 1 shown in his bones. And on a daily basis we are seeing regression.   He has been sleeping more throughout the day. His awake time is often 6 hours. But sometimes we try to push it a bit longer. He is getting more tired and weak everyday. He is no longer able to hold his body weight up with his arms and face plants as he tries to crawl. Yesterday he tried to get in the position to crawl and he couldn't get his legs to cooperate. Poor little dude. He gets frustrated and upset, and I get a broken heart. But with that said the pediatrician thinks that he will be lucky to live to his 3rd birthday. This makes me very sad, I am selfish and want to keep him. I know he will go to a better place, I just feel bad for us.

We are expecting to get a package in the mail tomorrow. It's "The Vest!" This will break up the mucus on his lungs and help it to drain. This will prevent early onset of pneumonia. He is also suppose to start breathing treatments of Albuterol and Flovent. But our insurance has denied the claim. This insurance stuff is a mess. We are trying to figure out a better more comfortable way for Zac to get around. We are thinking of a car bed, and a better kind of stroller. He is 24lbs of dead weight. I need to get something to pack him in. While in the car he struggles to keep his head up, this stinks because we are always in the car going to doctor appointments. We are concerned about his airway.

We picked up a pulse oximeter today that Zac is suppose to wear off and on while he sleeps and while awake, that didn't go over very well he cried for hours. He didn't think it was very nice of us to make him keep it on. We finally took it off so he could get some sleep. If it starts to get low that is a sign of him getting sick, or not having enough oxygen. Therefore, we monitor it daily and if it is low on a particular day we call or go to the hospital. If Zac gets sick at all it will mean pneumonia..hospitalization..and maybe death. So we have got to stay healthy as a family. PLEASE don't come over if you are sick.

Zac is maintaining his weight but is not eating consistently, we feel we are getting to the point where a G-tube should be placed in his stomach. We are meeting with the dysphasia clinic in 3 weeks to figure that out. The Pediatrician said that Zac would handle the sedation better now, than he will later. This will also take away the worry I have of him aspirating. But even with having a G-tube, he will still be able to eat the normal way. This will just make it so he doesn't have to work so hard for his calories.

We love Zac so much, we can't imagine our lives without him. This is a very hard time for our family and we appreciate everything that is being done to help lift our burden. All of the financial donations have been amazing, it is nice to know that we don't have that additional stress of medical bills, and instead we can enjoy the short life of handsome little man. We have been blessed with people helping out with meals, that is a blessing all the time (I hate to cook). After pulling an all day hospital visit it is so nice to have a meal already prepared for us. Thank you! We are very grateful for that as well. There has been family, friends and neighbors who help with Max and Ace. They are having a great time instead of being dragged to Zac's appointments. That also helps the appointment go smoother too, nothing like sitting there with 2 extra kids who don't want to be there, for several hours. Last but not least we are very grateful for all of the prayers, we draw strength from them. This is hard to explain, but I know that every pray is helping my family. Keep them coming, please and thank you!!