Bonded

Zac thinks that he and I are one person. It is interesting how sensitive to emotion he is. If I laugh, he laughs, even if he is not by me. For this reason we try very hard to keep positive emotions. A couple days ago I say to Brett "watch this," and I started laughing and Zac followed suit. Then Brett said "okay, I can do that too," then he laughed...nothing happened. Zac and I have a very special unique bond. He is mine and I am his.

Zac has his favorite people and favorite activities. He LOVES to wrestle with his daddy and brothers. He enjoys bike rides and stroller rides. He basically likes to do whatever his brothers are doing, he likes to be in the middle of things. Zac has a daily routine of making a mess, (there is only a small amount time where he will get down and "plays") He starts in the living room and pulls out the DVDs, then moves to the diaper cupboard, goes over to the games, moves to the kitchen and takes out the Tupperware, then goes to the bottom drawer and takes out the baggies, moves to the stove and takes out the pans, then he is done. This happens everyday and takes him about 45 minutes. During this time I have to stay on the couch and watch him. If I attempt to get up and do anything he cries. Then it is nap time, he goes to bed and I clean up the mess. Good times!

We had a good week, we went to the Weber State Fireworks, spent Monday morning at Willard Bay (Zac loves to swim), took a bike ride, and had a couple doctor appointments. We are trying to make the most of the little time we are given with him. Especially since he is sleeping so much and is only awake around 6 hours a day.

We learned that Zac has lost his peripheral vision, and is having inner ear problems. This makes it hard for Zac to lay on his back, it causes him to feel dizzy and feel like he is falling into nothing. This makes me sad because I feel helpless to do anything. We are trying out new ways change diapers and dress the baby that doesn't require him to lay down on his back. Ideas??

Because Zac is sleeping so often and not eating much, I am getting concerned that he isn't getting the nutrients that he needs. I am researching the most nutrient foods and planning a special diet for him. I am also going to try to meet with a Dietitian in the near future (if I can get in). We also went to see an Occupational Therapist today for feeding. Her biggest concern is that he will get too tired while he is eating and aspirate. After he ate 3 Gerber meat sticks he was already tired and started to struggle swallowing. She wants us to feed him more pureed foods, and run everything through a food processor. We are trying to hold off as long as possible on the Gtube.

I spoke with the GI specialist today and she said that the results of the swallow study were in and that it didn't appear that he was aspirating while he was eating. But it was not a good study. (He screamed the whole time.) She has put him on Myra lax because his GI system is weak and is moving very slowly, she also thinks this is the reason he doesn't want to eat much.

I also spoke with the Geneticist this evening, he said that Zac's organs are the correct size, but his bones show signs of GM1 type 1, but it isn't real severe. He is still trying to get approval from the insurance company to do a full on genetics test, and the way I understand it, it will explain more about the time frame that it onset. He said it will answer more of my questions. I asked about longevity, he said that this would help answer that, I have no idea how that could be. I also asked about Max and Ace's blood work results, the computer says that is it still pending. I am going to call him back next week.

There are 2 clinical trials that we are going to sign up for, one is for the NIH (National Institutes of Health) in Washington DC, they will observe the disease (since it is so rare, they don't know much about it). They will have us come out every 6 months for 4 or 5 days. And then there is another one in Minnesota, and they are trying to control seizures. They would put him on a Ketogenic Diet and prescribe him a drug. But as of today Zac is not having seizures, so the Geneticist is going to call and see if they still want him in the trial.

Sorry if I have repeated myself. I am very grateful for all of the love and support from all of you. I feel strengthened by your prayers for my family. I know that we couldn't do this without you! Please keep praying, this is going to be a long hard road for us. The emotional strain is wearing on us. But with our faith and hope in the Lord we can get through this.

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