Monday, March 25, 2013

A new set of wheels for Jax

Good morning all! Even though things have been slow in the blog world, I come to you to beg for your help!
There is a contest going on, the prize is 3 handicap accessible vehicles are being given away! The last couple of months we have begun researching how best to get a van. As much as I try to delay it, try to keep Jax as little as possible, its time! He is getting too long to sit rear facing, but he only weighs 25 lbs and definitely doesn't have the neck or truck control to sit forward facing. Not to mention his wheelchair does not fit comfortably in our van. Since Jax will be wheelchair bound for life, now is the time to start looking on how to best go about getting one.
The other day a friend emailed me about this contest. Unfortunately we are behind. The voting started March 11, and we just got our profile up the other day. So of course there are many people with a lot of votes, and of course the bad thing about voting is its a popularity contest, not a needs based contest. But even with all of the odds against us, we are going to try and win one of these vans!

Please click on this link, you can vote once a day, every day until May 10. If you answer a question you can get two votes! Please please, for our warrior, go vote for him to get a handicap van!

Friday, March 22, 2013

World Down syndrome day!

What did you do for World Down syndrome day? Hopefully you wore your mismatched socks. Or you wore yellow and blue, or maybe you just helped raise more awareness.
Here at our house, we were rockin our designer genes!!

Monday, March 18, 2013

My two favorite princesses!

Wow, has it really been a week since I posted? I'm finding it harder and harder to keep up with Jax facebook page and the blog. Facebook is so much easier! I'm not shutting down the blog, it will just have fewer posts than we used to! If you want to follow his facebook page you can follow it here.

A lot of little stuff going on in the Jax world right now. The infection in his trach is persisting in one little spot, even after IV antibiotics. I just sent a picture of it to his ENT, and then she'll decide where to go from here with it.
Also Jax is not pooping! I'm getting a ton of air out of his G tube, and a big, distended belly. Now not pooping is common in kids with DS. I have this problem with Arina. But Jax is not a typical child with DS! He never gets backed up! We've known since he was an infant that he doesn't poop on his own. He was checked for multiple bowel diseases, and it was determined it's probably from his brain injury. I've been giving him a liquid suppository every night before bed for over 5 years, and it works like a charm. But now we've gone 7 days with only a dime size stool after last nights suppository. He's not going even with his suppository! That's what has me concerned. I called his peds office today and told her I want an x ray. Just waiting for that return call! If they wait until 5 when everything closes I'm going to lose my mind!

Last thing is I'm impatiently waiting for his surgeon to schedule the J tube surgery. He wants to do one more test at the same time as the surgery, to check for structural problems with the esophagus and stomach. But his GJ tube is on its last leg, and I don't want to pay the money to have it changed in radiology just to have the surgery a week or so later! But if we wait until this tube totally fails, then we are looking at an admission until they can fit us in to replace it. I love how there is no sense of urgency in the medical field. Unless of course its something for them!

In between all of Jax drama we fit in tons of baseball (Ray is a coach and a board member, so he's busy busy!) and of course Disney! I'm super excited because in just two weeks is our annual Disney vacation. Seems dumb to do a Disney vacation when we live a mere half hour away and go a lot anyway. But its always been our vacation spot, and now its much cheaper for us. Plus staying in a hotel is half the fun! We are going to do some Disney stuff we've never done before. Get a private tour of the park, preferred seating for World of Color, and of course our favorite character breakfast. But since our princess is getting so fun, this time we are going to do the princess breakfast! Yay!
Yesterday we got some super cute pictures of Arina and Cinderella! I think these should be used for promo's, don't ya think???

Oh, and in case you didn't notice, we chopped Arina's hair! We didn't have quite enough to donate, so we were a bit bummed about that. But I LOVE it! It was hard to see her long hair go, but this crazy toddler phase requires a shorter do! It was a sticky mess every morning. And I think she looks more sassy this way!

Friday, March 8, 2013

Doing better

Jax is doing great this morning! I'm surprised at how fast he turned as just yesterday afternoon he wasn't tolerating anything and momma was just holding him and trying to calm him down!
It looks like we'll be home later today which is great, just in time for the weekend!
I was really hoping they would do Jax J tube surgery while we were already here. But of course they said let's wait, because its not them that has to deal with another hospital stay and babysitters and such.

Have a great weekend!

Wednesday, March 6, 2013

Back to PICU

Yesterday started out pretty typical. When I started Jax 10am feeds, he started vomiting. I tried watering down the formula, I even tried half strength pedialyte. He wasn't having any of it. So off to the ER we went! 9 hours and no sleep later we finally settled into our PICU bed.
He's perked up a lot with IV fluid, now the plan is to figure out a good way to restart feeds slowly so that he'll tolerate them.
One thing I do miss about our old hospital is the fact that everyone knew Jax and most nurses I felt comfortable leaving Jax with. Here I don't know a soul, but I have to run home and take daddy Arinas car seat.
Mondo talks about how cool it would be to clone a person, I will let him clone me so I can be in two places at once!
I update more frequently on his Facebook page.

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.