We found out! Well, we have some very basic knowledge at last of what may very well be the cause of Daniel's everything. His developmental delay, his cerebral vermis hypoplasia, his hypotonia and more issues. Get this: it is one gene and it is a deletion from the gene. The gene is BCL11A.
The research assistant explained it like this: If the gene were the word Supercalifragilisticexpialidocious, then Daniel would be missing the "cali" part. Think about that! That "cali" part is what has done this?! Can your mind even go there because mine cannot! It is insane! So far though, that is what we have.
What does it mean for Daniel? A whole lot of nothing at this point. It means we keep on doing the day to day stuff. We keep on raising him like there is no limit. We keep bringing him with us to unique places and we keep loving him like we love him--with all of our heart. So Supercalifragilisticexpialidocious to you all!
Tuesday, June 2, 2015
Wednesday, April 15, 2015
There's the rub
Life gets in the way of us updating this blog sooner. As I am sure you can imagine, things have been busy. First, Daniel is doing great! He loves school, is happy as usual and is learning new things everyday! Daniel has been making great strides in walking on his own here at home and at school. It is so great to see. He is very inquisitive and wants to know what everything is and what everything does. He still loves to sing and has a great voice and knows how to carry a tune...any tune.
Time flies and it is amazing it is Spring already. We keep busy with Daniel's appointments and our daughter's sports and help with homework/projects. It should be no surprise to anyone that we have been struggling since moving to this area. With Jason the only one working full-time, it has been difficult to get ahead in any way. We have been fortunate to have family help us, though that help will soon need to end. In a few weeks, I will temporarily be covering for a dietitian and working full-time which will help in terms of money, but Jason has finally realized what that means for us. You see, if Daniel were neurotypical, we could have him stay after-school in an after-school program. We could have our daughter come home and stay home by herself for a little while. She could look after her brother for a bit. All this would allow us to work until 4:30 or 5pm and come home and not worry about the kids. Well, worry in different ways. However, Daniel is special needs. Our daughter is capable of many things but he needs many more. So, we are lucky that we have my parents here and we don't need to pay them, but they are not getting any younger and Daniel keeps growing. The reality is that we will eventually need to pay someone and of course that someone will need to be someone who is not a teenager, but one who has had more training. That is costly. So where will our money go from working full-time? Right. We thank our lucky stars for my parents. Though what happens when the temporary position ends and we don't have help financially. How do we get ahead? How do we get ahead let alone even try to be independent. You see the problem? You see what is wrong here? We need a break!
Time flies and it is amazing it is Spring already. We keep busy with Daniel's appointments and our daughter's sports and help with homework/projects. It should be no surprise to anyone that we have been struggling since moving to this area. With Jason the only one working full-time, it has been difficult to get ahead in any way. We have been fortunate to have family help us, though that help will soon need to end. In a few weeks, I will temporarily be covering for a dietitian and working full-time which will help in terms of money, but Jason has finally realized what that means for us. You see, if Daniel were neurotypical, we could have him stay after-school in an after-school program. We could have our daughter come home and stay home by herself for a little while. She could look after her brother for a bit. All this would allow us to work until 4:30 or 5pm and come home and not worry about the kids. Well, worry in different ways. However, Daniel is special needs. Our daughter is capable of many things but he needs many more. So, we are lucky that we have my parents here and we don't need to pay them, but they are not getting any younger and Daniel keeps growing. The reality is that we will eventually need to pay someone and of course that someone will need to be someone who is not a teenager, but one who has had more training. That is costly. So where will our money go from working full-time? Right. We thank our lucky stars for my parents. Though what happens when the temporary position ends and we don't have help financially. How do we get ahead? How do we get ahead let alone even try to be independent. You see the problem? You see what is wrong here? We need a break!
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