Happy New Year

Happy New Year to everyone!!
Looking forward to this year and hoping it brings less hospital stays and surgeries than 2009. We've been looking for a chair to put in Jaxson's room so we can start having a night nurse. We looked at all the stores, and couldn't find anything. I went on KSL.com, which is our local classifieds, found me a chair for 50 bucks. I was so excited that I decided to look for cribs. Jax really needs a whole new bedroom set. The crib is seriously 11 years old, and you have to move his dresser carefully or the top will come off. I found a crib on there too! It was the exact one I just looked at the RC Willey outlet for 199, I got it in perfect condition for 100! So I guess this year I'm going to be a deal finder. I thought I already was but I'm on a roll and its only the first day of 2010!
We are also having so much fun playing with daddy's new camera. You can finally see what color Jax eyes are instead of black. I love this picture because he is looking at the lights, and you can see it reflecting in his eyes. His vision is very poor, but lights is alway where his eyes go because he can see them.

We actually made it to midnight last night. Should have gone to bed early though, because Jax coughed all night! Neither me or Ray got much sleep. So the one thing I hate about the trach....when he wakes up in the middle of the night, I can't just let him play in there until he goes back to sleep, he needs to be suctioned. So we've gotten a lot less sleep since the trach, thats why we are going with the night nursing. But I also just found out our insurance only pays for nursing for 90 days, then they expect medicaid to kick in. Well he is on the waiting list for the Travis C waiver, but he's number 20, so they told me it could be up to a year. My case manager said he should qualify for medicaid because of his medical need, but when I applied for it he was denied because we make to much. I don't know who to go through, but I think he should qualify for some nursing time, don't ya think?
He still has this cold, his oxygen needs are still up a little, but he's ok. He loves hanging out with his big brother that takes such good care of him!

Oh and also, if anyone knows Rebecca from Rebecca creates (she does blogs) we are ready for a new blog, but when I click on her button it takes me to a wierd site. If anyone knows how to get a hold of her I would really appreciate it.

No belly relief

There is no belly relief for the little man tonight. Thank you Peanuts mom for sending us those bags so fast so we could try them. Unfortunetly they aren't working. There's just to much tubing for him to push air through. After feeding him with it, I pulled out 50 cc's of air out of his belly. I guess the good thing is it doesn't really make him fussy, he just gets a really distended belly. Today he had a checkup and some monthly labs, our ped called his GI doc and she didn't have any brilliant ideas except to leave his extension open in a diaper when he's not eating. Well we already do that. So for now, we have our own little rigged feeding setup.

See the syringe hanging on his pole? His feeding set is dripping into that, so his belly can vent while he's eating. It works only when we are home.

I also think he's caught this cold Tanner and Carter have. Luckily I think its just your run-of-the-mill cold, so I don't think it will land us in the big house. He's very junky, and his oxygen needs are up. He also is definitely breathing harder, so we'll just watch him. He also had a new vaccine today that I've never heard of. I think its called pneumovax and its for preventing pneumonia. So this kids been vaccinated for everything, because we do know that RSV, or pneumonia can definitely kill him.

Jaxson is trying out for Flash dance 2!!

Just call me tiny dancer!!

Daddy trying out his new camera on Mondo and his new remote control helicopter.

Happy Monday after a holiday!

Good morning to everyone! I was reminded that there were no pics of Jax from the Christmas post yesterday. And as much as I hate to admit it, I often leave Jax out of stuff, because he just doesn't understand. He was asleep when we opened presents. I know, I'm horrible. My mom has a high chair that the back goes down, Jax can't sit completely upright. We have talked about getting one for Jax so we can sit him where we are so he doesn't miss out. So here's some Jax pics to make up for yesterday.

Carter finally lost his first front tooth yesterday. Yeah for uncles that just yank teeth out!

You get an extra dollar for front teeth!!

Jax is still having major air in his belly. And since I couldn't get those bags because of that dumb doctor, I have rigged my own thing. In our hospital they call it the murphy drip. I'll take a picture and show you tonight. You take a 60 cc syringe, and rubber band his feeding tubing so it drips into the syringe. Then his belly is constantly venting while your feeding. Its working pretty well, although it doesn't work when your out and about. And thank you to our friends that have priority mailed us some bags, hopefully we get them soon!

Christmas pics

Tanner is doing better today. The steriods kicked in like I thought they would. He still needs frequent treatments, and when I checked his sats this morning when he was still asleep they were around 85. Whoops. But I wonder how many asthma kids drop their sats when they are asleep and their parents just don't know it because they don't happen to have a monitor handy like I do.
Here's some Christmas pics. The last ones are from the new camera. Warning, there are lots of them..
Christmas Eve we always open one gift. This year it was games for their Nintendo DS.

Christmas morning. Santa left a wrapped present for the whole family, what could it be?

A Wii, finally, they were so excited!


Presents this year consisted of I-pods, video games, and of course, lots and lots of lego's. Carter's getting almost as good as his big brother at putting them together.

At my moms house later that morning.


Finally at our house with Ray's family for dinner and more presents.

We were so excited to see Lacey, our niece that is living in Florida right now with her new hubby. She did the Buddy Walk there in honor of Jax!

Poor Tanner in the bathroom trying to stay awake for a treatment.

Christmas day

Quick Christmas post. We had a great Christmas, pictures to come. The boys came upstairs at 1:30 in the morning.
Seriously...
They were like, Merry Christmas. And me and daddy were like, GO BACK TO BED!!
7:30 they came back up, a pretty reasonable time.
Let me just say that I think I'm most excited about the present that's not even mine. Santa brought daddy a super nice, super expensive, camera. It takes fantastic pictures, crystal clear, and I can't wait until daddy figures all the gadgets out on it so we can see what it can do.
Here's a sneak peak..

can you count the freckle's on his face?

I'm smacking myself tonight for opening my big mouth about our house being so well lately. Tanner woke up wheezing like crazy. I thought it was just the excitment of Christmas giving him an asthma attack, but it continued throughout the day, and he added a fever to it. Now I'm having a hard time keeping his sats up and he's needing treatments about every hour. I'm really fighting to keep him home. I've already started steriods, I keep them in the house with all my severe asthmatics, so in a few hours they should be kicking in. I'm just praying I can keep him home until then.

Keep those fingers crossed!!

Merry Christmas Eve!!

Merry Christmas to all our dear friends!! We have been super busy, like I'm sure you all are. So I speed check everyone's blogs.

I'm so glad all my shopping's done and I can relax and wrap presents. Jax is still doing good, its been frustrating having doctors out of town though. Its like they don't leave someone in charge. We couldn't get his lovenox level rechecked because no one would order it. Both his ped and his hemo doc are out of town. The other ped wouldn't order these farrell bags for Jax so I can try them to vent his belly. She said she didn't feel comfortable because she didn't know what they were. Sheesh, its not like a new med, its a feeding bag for crying out loud. So now I can't try it until next Wednesday when our ped comes back.
Here's a few cute pic of Jax working hard to sit up. Merry Christmas!!

Oh man thats hard work

I'm pooped.

Moving on to working on that head and trunk control in the bumbo. Still can't sit up without some helping hands.

A tiny smile for his efforts!