The Pursuit of Happiness

As Brett and I are in the kitchen, (he is cooking and I am cleaning, which is pretty much the roles we have taken) we are talking and laughing about things, and Max asked, "why are you guys always so happy?" With all of this doom and gloom that is staring us in the face every minute, we have decided to make the most of life and cherish every moment. Are things perfect, no way! Knowing that we have little time with Zac it didn't automatically turn the kids into perfect angels. But we know that happiness is a choice. Even though we are watching our son literally die before our eyes, we are going to enjoy this journey. We hate the prognosis, but we love him so much. We believe that there is a purpose and reason why we are going through this and we hope to come out the other side stronger. But for now we still really need your prayers!

He thinks he is so big just like his brothers.

Update on Zac: He is getting more tired and irritable. He can remember things he used to do and gets frustrated because he can't do them anymore. He only wants to be held. And when I hold him he rests his head on my shoulder. Zac has always been weird about laying on changing tables and exam tables. So we adjusted and used the floor. But in the last couple days he has developed a fear of laying on the floor too. He is not happy getting a diaper change or getting dressed. With the other boys I would change diapers while they stood up, but Zac isn't strong enough to hold up his body weight for long. 

Because he is getting more tired and weak we have decided to go back to two naps a day instead of one. But that doesn't leave much time in the day to be awake and play, especially since it takes a very long time for him to eat, and they want him to eat 6 times a day. Today his awake time was 6 hours. That just doesn't seem like enough time spent with him. But if he is tired he isn't fun to be around either. We will just make the most of the happy boy we love.

Happy to be outside.

Since we received the diagnosis we have been going from doctor to doctor, specialist to specialist, hospital to hospital. Every time we get in the car now Zac starts to cry thinking we are going to the doctor.

We have been seeing the Pediatric Neurologist, and she was the one who told us the diagnosis. We will not be seeing her again until Zac starts having seizures. I have been praying everyday that he skips that part of it. They scare me to death.

We have an amazing Pediatrician who has mirrored the urgency I have felt since the day of the tremors. She has an assistant lady who has been making all the specialist appointments, filling out paperwork and appealing things through our insurance company. The day we met with her was the day I felt like I could breath again. It has taken much of the stress and leg work off of me.

We have been to the Geneticist at Primary's and he ordered a full skeletal x-ray, ultrasounds of his organs and then more labs and a urine sample form Zac. We went straight across the hall and did all of them while we were there. It was a long day. He also ordered blood work for Max and Ace so we know whether or not they have the disease or are carriers of it. We have not heard back.

So tired

 We went to the Pediatric Gastrointestinal specialist in Riverton who will be monitoring Zac's eating and digestion. She will be the one to put in his G-tube (feeding tube directly to his tummy) when the time comes. She also ordered a swallow study to be done at Primary Children's with a Speech Therapist. Which we did yesterday, it was at nap time and he doesn't like to be set down. So to get him to cooperate was impossible. The therapist said that she wants all his food to be pureed. Also that he is not aspirating while he eats. Very Good.

We met with a Cardiologist, she did an EKG and it came back normal. But she said the things that they worry about with kids like Zac don't show up on an EKG and that we need to go back and have him sedated and get an ultrasound of his heart. I still need to make that appointment. Ugh! I don't know why we didn't do it all at the same time.

Fun on Grandpa's tractor.

We are scheduled to go to an Opthamologist and Pulmonologist in the near future. He is still having physical therapy weekly, I just got a call today saying that the appeal went through my insurance company and Zac will be starting weekly speech therapy and occupational therapy through Primary Children's Rehab of Ogden. He also is involved in Early Intervention and all 3 therapists come out twice a month each. 

Even though Brett's medical issues sucked it has been very nice to have him off of work for the last month. I don't know how I would have done it without him. And also for all those who have watched Max and Ace so they didn't have to sit in a boring hospital day after day, I am grateful for you too. 

He is starting to squint his eyes all the time.

With all of these appointments we have been getting medical bills pouring in through the mail and we are very grateful for those friends and family who have donated to help ease our burden. Thank you, and God Bless you!!! If you have any desire to donate there is a link on the right side of our blog. Also, if you want to leave comments or have any fundraiser ideas, please let me know.