Rhino boy

So Jax has been congested and sick since Wednsday. We found out today that is was the Rhino virus, whew, we can handle that one. It tends to be one of the lesser of the evils, I think we can make it through without the hospital stay, his oxygen need is up but not enough that I can't watch him at home, moms are better docs anyway.
Thanksgiving was good, today we are putting our tree up. I love the holidays, we love to drive around at night and just look at peoples xmas lights. Tanner my autistic one LOVES xmas lights. Next Sat. the 6th is Jaxsons b-day party. its an open house so just come and have a piece of cake. No presents please, its from 4 to 6 Call me at 792-4661 to get our address for those of you we just met and didn't get invitations to, we would love to meet our new friends.

Lost Friends

So I went to change my background to a cute Christmas one and it deleted all my friends on my friends list. So I put some back on but if yours is not on there or you want me to add you then send a comment and tell me your address. I'm still new with blogspot so if you know why it did that fill me in on that too. Thanks so much, Lacey and Jax

ER again !!!

We were back in the ER last night for high calcium again. The nurse called and I could tell by her voice that it was bad. She said head back up. I wanted to give him fluid at home but high calcium can cause heart arrithmias and thats not good on a heart kid. So when we got there we told them we were not staying, so they gave him a bolus and rechecked it and it was down a little so they let us go. Yahh, we have been in the hospital 3 times in the last two and a half months and in the ER three times, enough is enough. His crit is also going down so he will probably need a transfusion pretty soon, I don't know if they will admit him for that or just do it in the RTU and let us go, he still has his picc so we can do stuff so easy, I love having it I want to keep it forever. At least we are home for Thanksgiving, thats all that matters.

Quick update

We are really busy right now like everyone else is. We are having Thanksgiving at our house this year because we have the most space. Its ok with me because I love having people over. Rays aunt from California is going to be here too and we are super excited to see her.
We are also having a birthday party for Jax this year, we've never had one yet because he doesn't know and he can't eat birthday cake. But we decided this year its time. We need to celebrate that we made it to our 3rd birthday. Its going to be Dec.6 but I don't know a time yet. It will be an open house so people can come and have cake, and no presents needed. My phone number is 801-792-4661 you can call me for my address if you want to come.
Jax is doing good, he is finally gaining a little weight, we are up to 17.13 yeah. He is still on continuous feed which is good and bad. Its good because I don't have to remember to feed him but its a pain because the bag goes with us everywhere and its one more thing to carry. He still has his picc because they are drawing labs every couple of days, I love having it, I wish I could keep it forever. He is going in for a sleep study in acouple of weeks, and he also needs the ABR hearing test done again because he continues to fail it, the've talked about hearing aids but we will wait to see what the ABR says. I don't know when we will do it because no one will sedate him he has to be put under general and to intubate him just for a hearing test may not be worth it because he likes to "suck the plastic" as we call it. Lots of appointments but nothing more than usual, we are used to it
Oh while I'm here, If anyone has any ideas for my autistic son and how to get him to go to school I really need advice, I'm ready to pull my hair out with him, every day it is a fight to go to school. His resource teacher asked about anxiety meds might help, I hate to medicate him because so far we have'nt needed to, but if it helps him I'm willing to try it. I will ask my pediatrician about it today. We hope everyone has a great Thanksgiving, we know we have a lot to be thankful for.

Jax and his BFF

Jaxsons BFF Ariana came over on his birthday to play. She is so funny she loves him and she loves to grab him and give him kisses, it was a fun playdate.

Happy birthday!!

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Last day of two

Tommorow my baby won't be a baby anymore (well size wise yes). He will be the big three. I can't believe we've made it this far. How many times did we wonder how much time we had left.



This year we will keep on working on that head control and that beautiful smile that we miss so much. We will try to stay healthy this winter and we will start preschool from home because we are to fragile to go to school. (Plus he is a baby, how can he go to school)



Happy birthday baby and we look forward to many more with you!!!

Big Boy

We went to see the ENT today. He said there was no fluid in his ears so he sent us upstairs to do the hearing test again, and again he failed. So now they are talking about hearing aids. But they want to do the avr test again (the one they have to put him under for) to see how bad his ears are. He also wants to get a sleep study to see how he does when he is asleep. We've actually never had a sleep study before. Its been talked about but other more pressing issues usually have us more worried.

But my big boy is holding his head up so good. He also does what I would call a smile, its the closest thing since PCMC took his smile away two years ago. I included a video of him holding up his head. Its kind of dark, and ignore the background noise, and the grinding of his teeth. I'm just glad I figured out how to get it on here. And at the very end you will see his version of a smile. Lots of love from Jax

Refreshed...maybe

So me and my husband went to a hotel on Saturday for our anniversary. No kids, yeah. We went to dinner, a movie, and did a little x-mas shopping. I didn't wake up on Sunday until 10:00, wow that never happens. So this morning I woke up feeling refreshed and ready to tackle the week. Then I had a billion stores to go to. Lab draws for Jax, and tommorow a doctors appointment at PCMC. I'm feeling tired already.

Oh well, it was a much needed vacation and I can't wait until next year.

Calcium Craze

So I get a phone call from my pediatricians nurse on Wednsday and she said the labs we had just drawn from him showed that his calcium was 14.6 which is dangerously high. So we had to high tail it to the ER. Of course they admitted him and started fluids to flush the calcium out. But with him being a heart kid they have to watch how much fluid they give him to not stress out his heart. Its a hard balance to keep.






Your probably wondering why his calcium was so high. Well when he came home two weeks ago he came home on hefty doses of calcium and potasium because he was pooping so much. So we've been doing labs to make sure it didn't do that but it happened anyway.

So we were back in the hospital again, its neverending, but his calcium came down and we came home today after only two nights. We can handle that. Plus our anniversary is tommorrow and we had planned to go to a hotel. Plans still on!!

To poop or not to poop

Well he is back to not tolerating feeds and not pooping since we changed his formula back. So now we are going back to the formula he came home on and watch for pooping to start again. Hopefully not to much. Other than that we are just getting frequent labs from his picc and weighing him weekly because he has lost so much.

We are excited for the holidays this year because we are finally in a spot were we can give our kids a good Christmas.

Nov. update

So we just started this blog so if you don't know Jax history instead of me recapping everything check out his myspace. Myspace.com/jaxsonsfight.
He came home from the hospital the day before halloween. They didn't want to let him go. They didn't think he was ready. It was more me saying I'm leaving before you give him something else. They sent him home with his picc so they can draw frequent labs because he has no venous access. He has lost a pound and if he doesn't come up soon we will beback in the hospital. So that is what we are working on now. He also gets shots twice a day of bloodthinners because they found a huge clot when they were trying to put a picc in. Now they are checking him for a clotting disorder. Not like he needs anything else. So pray for pounds or even ounces right now.