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Swimming With Brothers

Today after a month and a half I finally got the results of the blood work of Max and Ace, unfortunately both boys tested in the carrier range for GM1 Gangliosidosis. This will only affect them when they decide whether or not to have children, there is a 1/250 chance of marrying another who is also a carrier. Brett and I were just lucky enough to have found each other.

Zac has regressed so far that if you judged him on an age level, I would say he is somewhere between 4 and 6 months old. He is unable to hold himself up, sit up, or swallow solids very well. He cries much of the day. We have a bumbo that he sits in for a couple minutes at a time. He struggles in his car seat and in the high chair. So the only option we have now is to carry him around all day. This is tiresome for Brett and I, and it is hard to accomplish anything while holding him. Our most productive time is during nap time. I received a phone call yesterday from Primary Children's Rehab and they just had a positioning chair donated to them and called and asked if we wanted it. I am not sure I know what it is, but if it means I can set him down for a while I am willing to give it a try.

He actually gets strapped into the gait trainer even though he can't move himself around. He gets pushed around the kitchen and living room by his brothers. This lets them play together, and I get to take a shower. This is fun for him and Max and Ace. I admit that I enjoy watching it a great deal too!

We have taken therapy off of our priority list, we felt like it was time consuming, and wasn't helping him. If we thought it would have made a difference in his abilities we would have continued with each (PT, OT, and Speech) weekly. He cries almost the whole appointment. It just wasn't worth it. So now we are doing one appointment a week with Primary Children's Rehab. (Instead of 3.) We are continuing with Early Intervention twice a month for PT, OT and Speech. That is nice because they come out to the house. He has gotten used to the therapists that come and he lets them work with him.

This coming week will be a hard one for us, we will be deciding on the best time for the placement of the G-tube. (The sooner the better.) We are meeting with Hospice and Rainbow Kids through Primary Children's. Rainbow Kids is palliative care, I don't know anything about that, I guess I will find out. Please continue to pray for us, we need all the strength we can get, also we need Heavenly Fathers help with the decisions we are forced to make.

Zac LOVES Sara

These last few months we have tried to do fun things and make of memories with Zac, we also take a lot of pictures and videos. After he passes we want to make sure we have no regrets. We have had lots of fun, but don't get me wrong this has been the hardest time of my life. Everyday that I watch Zac's little life take another step backwards, it tears me up inside. I struggle with myself, I am constantly fighting depression, I have a hard time focusing, and my mind feels fuzzy. I try to swallow the constant lump in my throat every time someone talks about Zac to me. I try so hard not to be emotional and cry. But I am no good at it. I just can't imagine life without my little Zac, he is MY baby and I want to keep him. I KNOW the plan, I KNOW where he is going, and why he is going through this, but I am selfish and human. I wish things were different. But having the knowledge of my forever family keeps me going. This is just a short time, but very hard.

"The Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore, if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil, and we shall soon have them again." Joseph Smith