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!

Boys!!

Things have been so quiet I keep waiting for the ball to drop. We haven't had as much as a cold in our house in months, knock on wood. We got Jax longer trachs, and when we first changed it, he coughed and was super junky all night. I was quite worried that he wouldn't tolerate the length change, but the next morning he was fine. I guess its like getting a whole new trach because its irritating a part of the trachea that wasn't touched before. We are also adjusting his blood thinners because his levels have been high, but getting his hemo doc to call us back before Christmas is proving to be taxing. I'm also wondering how much his cecostomy is actually working. His surgeon didn't know if the cecostomy would do him any good, but we gave it a try. It seemed to at first, but I still have to give him suppositories to completely flush him out. Now that he has the trach he seems to swallow a lot more air. I vent his g-tube as much as I can but he still gets a lot of air into his gut, and since he can't even "toot" on his own, I'm giving him a suppository sometimes twice a day to relieve his distended belly. Plus, because the tube goes into the bowel, the area is always red and irritated. It sometimes even bleeds, if stool has leaked out. I'm debating if we should just pull it out and let it heal. I don't know if it has to be surgical or not, because if stool leaks into the abdomen that would be bad. We'll talk about it after the holidays. It would be one less tube to take care of!!

I love this pic. I don't know why, but its my new favorite.


The boys frosting cookies last night.



All done, the boys frosted a couple each, and I ended up doing the rest. Boys lose interest quite fast. And soon they were back to.........

what they are normally doing.

Tis the season

We have a new adoption plan. We are getting our homestudy, we need to gather birth certificates and things. Ray's will be fun to try and get from California. But we aren't starting the foster thing unless we get a call that we get the baby. Its 32 hours of classes to become a foster parent. And we don't really want to me foster parents, we just need the certification if we get this baby because she is in the foster system. So you probably won't hear anything unless we get the call that she is ours.

Have I mentioned how much I love this season? Oh yeah, I have. Friday night, after we went to dinner, we got Jamba juice and just drove around to look at the lights. We went to a neighborhood were every year they all do tons of lights with the Twas night before Christmas story. While we were driving through we noticed that they had a Santa in front of one of the houses talking to kids so they boys jumped out and went for a closer look.
Last night we had my family Christmas party. It seemed everyone was a little dull this year. The party ended so fast it almost wasn't worth the 45 min. drive. We didn't take many pictures either, but we did get Santa pics of course. Well, except for Tanner, he was on and off Santa so fast I missed it.

Seriously mom, why did you put me on this goofy mans lap?

Today daddy's making cookies with the boys and letting them frost and decorate them. Interesting pictures to come!!

How is Jaxson doing

I've been so consumed by this baby that came into our lives so quickly, that I haven't updated on the warrior to whom this blog is for.

Jaxson continues to do amazing. The trach really has been a lifesavor. Our new longer trachs are in the mail, so we should get those anytime. He is doing much better with his therapies, holding his head up for quite a long time. He still gets pooped out fast, but he's doing better. His vision seems to be slightly improved. He looked at bright tinsel yesterday, normally he only looks at lights. It had to be shiny tinsel, but he definitely looked. He's giving some great smiles. One of these days I'm going to catch some on video. (oh, and check out his flat hair, he had a beanie on that flattened his fohawk)

When he sits in his napnanny, he always puts his left leg over the side, its like his way of chillin.

Ok, and I am going to update whats been going on with the baby. I never heard anything about the meeting on Tuesday until today. Now they say they have multiple families they are considering. It sounds like at the meeting they pulled some families that are already in the system that said they would take special needs kids. But I really don't think anyone will take her. It sounds horrible, I know, but they've given this baby a death sentence, not to many families want to deal with that. We are still in the running, but we need to get moving on the paperwork, so here's what the plan is.

We are getting a home study done by a private company (which we will pay for) but the state will accept it. It is the only private home study the state accepts besides their own. But if we go through the foster system, the home study is the last thing they do, and we need it first so she can come into our home. Plus, with getting this home study, we can use it for other adoptions through other agencies should this not work out. We also are getting started with the states procedures to become foster-to-adopt parents, which is all their classes and licenses. So I am still hopeful that we can get this baby, but if it doesn't work out, we have a home study to start looking elsewhere for our girl.

Now that I've had it so close to my fingertips, my urge for a girl is stronger than ever

Heck, pretty soon I'm going to start putting bows in Carters hair!!!