Monday, March 4, 2013

Q&A, and a little bit more!

Q. Hi Lacey, can you educate me? What is the difference between DS and MDS?
There are 3 different types of Down syndrome. Mosaic is the least common, and it means that not every cell if affected with the extra 21st chromosome. Sometimes because not every cell is affected the childrens features may not be as pronounced, and its thought that they are "higher functioning". I only know a couple of people with mosaic. One little girl they didn't even know she had it until she was about 7 years old and had a couple of unexplained medical problems.

Q.I LOVE that last picture. Would you tell me where you got those t-shirts?
These shirts are from a group we were a part of in Utah called Hopekids. If you google hopekids, I know their website sells the shirts! I bet you can order one there! 

Happy Monday everyone! I'm considering making the blog so that anonymous comments can't be made. I am getting a TON of spam lately, and they are all anonymous comments. I hate to do that to our friends that like to comment, but signing up with google only takes a second, and then you can comment all you want!

The whole school situation with Jax is taking an about face! I found another school in a different school district that would be much better for Jax. But I can't take him there unless our school district says its ok. I'm sure the process for that is long and grueling. They may even flat out say no! But a few things have made me open my eyes and change my mind on whats best for Jax. Although I think the social aspect of school would be great, I'm finding more and more that they risk outweighs the benefit! Seeing how much Arina has been sick since starting preschool, that risk is not worth taking for Jax. If I lost my precious boy because I started him in school and he came home sick, the guilt would be unbearable! I've been able to keep him free of respiratory viruses for over a year now, a huge feat for us! Knowing that he is at a much higher risk for heart failure with his problem with blood returning to the heart makes that feat a lot more important! 
Jax started getting nursing hours a few weeks ago. Even though I know that Jax deserves nursing hours, I just find a nurse in the house invasive. I only used two days a week, thinking that it wasn't too invasive and I could get some errands done during those days. Well the first time I let the nurse do Jax cares alone and now he has a raging infection around his trach site! Since I didn't see her do the cares I don't know if it was not washing hands, or if it was simply because the velcro was rubbing his skin. But this is why I am so anal about how the cares are done. A simple sore from velcro rubbing can turn into something nasty. I have a nurse that I'm going to try, he has a lot of experience in the ICU, which was a huge plus for me! Don't get me wrong, I think the nurses we had were very nice, and I'm sure good nurses. They are just new nurses. You can study something until your blue in the face, but experience is where you learn the most! I don't feel comfortable with someone that I feel I have more knowledge and experience than they do. And since this person will go to school with him, and take care of him while I'm not there, I have to be 100% confident in their abilities.

I'm starting to ramble, but the point of the story is that for now, I'm pulling the idea of sending him to school off the table. Since the special needs school close to us is mediocre anyway, we'll keep him home and have a teacher and therapists continue to come to the house. My heart is at peace knowing that it is the right thing for Jax right now.


The VW's said...

I love how Jax is looking up at you in this picture! He loves his Momma!

I hear you about school....such a big decision! Gavin could go all day, every day...but I only have him go 2 afternoons a week, because I am so careful about keeping him away from germs! I get tired of people asking me if it would be better for him to be around germs to get immunity from them.....they just don't understand that it has nothing to do with his immunity. It's just that he is already compromised with lung disease and a heart defect, so when he gets a cold, his lungs and heart can't handle it like most of us can! I wish it were so easy, but it's we have to live a life of being more cautious.

charity said...

i hear you about school. my daughter has been sick non stop for over 3 months now with colds and other stuff. she has not as bad medical issues but still sometimes i wish i could keep her in a bubble so she cant get sick anymore