Monday, November 30, 2009

Starting the week after a holiday

Back to work after a long weekend. It stinks, doesn't it?
I've spent the morning trying to get caught up on blankie stuff. I've gotten behind, and my blankie room is a disaster of blankies.

Blankies getting their signature Jaxson picture.

Blankies ready to be packaged up.

Blankies ready to be put in the mail.

Aahh, it feels nice to be organized again. I finally have my rememberance blankies being embroidered, I can't wait to show them to you.
Every once and a while I like to post about the blankie project for people new to our blog. The blankie project is to send blankies to kids with life threatening illnesses. They help so much when your sick a lot and always in the hospital. Click here to check out the blankie site. On there you can request a blankie for someone, or make a donation to give a blankie to a child somewhere. There's also a video on there of kids that have recieved a blankie so you can see what it's all about. If you would rather donate material (some people like to pick out the material themselves), email me and I'll tell you what we need right now.

Calling all friends. I need addresses to send Christmas cards out. Email me and give me your address please so I can send you a card. Again my email is

I guess its a good thing this kid doesn't breath through his mouth and nose anymore!!

Sunday, November 29, 2009

Movie time

Watchin movies with daddy!

Friday, November 27, 2009

Something else to think about.

Wednesday I was in the doctors office and there was a med student doing her residency. She came in the room with us when we first got there and started asking all kinds of questions. Jaxson was a perfect learning tool for this new doctor. One of the things she asked has stuck with me and now I would like everyone's opinion on it.
She asked me if we knew before Jaxson was born that he had DS or heart defects. I told her no that it was a total surprise. Then she asked me if I would recommend for people to get the prenatal testing or not. I told her that was tough because I think it depends on different people's personality's. I didn't mind at all, but I'd also worked in a childrens hospital and knew all about heart defects so it didn't scare me. But I have a friend that was prenatally diagnosed and she said she would have to know before their born, that she has to be able to prepare. So everyone is different and I can't recommend one way or another. I think if you know you won't have an amniocentesis done, then don't even get the blood test. Because the blood test always seems to show increased chances and 90% of the time its wrong. Then parents are upset until the baby's born. Our DS foundation here says she gets calls a lot from people that have already aborted. What the heck are you calling for now? Its too late. One doctor made an abortion appointment before the couple left the office. Hello, shouldn't this couple think it through first?
I did tell this med student that I think what needs to be done is we need to educate our OB/GYN doctors. They are giving out old info on DS, and I think they need to push a little more for adoption rather than abortion. The abortion rate for DS babies is staggering, even in this day and age. There are over 200 families waiting to adopt DS babies, and thats only one adoption program. They need to have an conference or something and give out new updated info on DS and what it means for kids. That they are more alike than different. And they are not severely delayed like doctors still say they are. Then I was thinking in bed last night, would it really hurt to make up like a flyer, and sent it out to OB offices. Nothing nasty, just some pics of our kids, and some updated info. And just asking them to read this before they talk to another couple expecting a DS baby.
I mean, is this not a face that deserves a chance?
And does she look that different?

And does he look severely delayed?

And these are just a few of our adorable friends. What do you think?
And of course here's some pics of my sweet baby, wait, I mean big boy.

Thursday, November 26, 2009

Happy Thanksgiving!

Happy Thanksgiving
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Happy, Happy Thanksgiving to all of our friends,near and far. We love you all!

Wednesday, November 25, 2009

Home for some serious turkey tomorrow!

Jaxson has been fine. We are now thinking it was aspiration. He was wretching while getting his blood drawn Monday. And while nothing came all the way out, I could see formula in his throat. There wasn't much I could do, expecially with a needle in his arm. Just a couple hours later the fever and super fast respirations came. That would explain why it only lasted a couple of hours. Just one of the many reasons his lungs are toast.
I also talked to the trach guru. She said that kids forget really fast how to breath through their mouth and nose. So its not that he can't, its that he is being lazy. Also she is not worried about the granulation tissue. The more you mess with it the more it grows. So unless we have a hard time getting the trach to go in or we get bleeding, we just watch it. Sounds like a plan to me.
Can't wait for turkey tomorrow. And the fact that we get a four day weekend with daddy. We'll be putting up the tree the day after, our family tradition. And we're excited because this year we are doing a Disney tree. Very fitting for our family, don't ya think?

Happy Thanksgiving everyone!!

Tuesday, November 24, 2009

Crisis averted, for now anyway

Well, last night wasn't as bad as I was expecting. Didn't get much sleep, but as quick as he tanked last night and as fast as he was breathing I was sure we'd be in the ER before morning. The fever stayed on the lower end all night, he did cough a lot though. Maybe we once again dodged the yucky bugs (RSV, H1N1, influenza). And just have a small bug (rhino, adno virus). I know we can't avoid it all winter, but it would be nice if we could enjoy the holidays.
So for now it looks like crisis averted, unless it comes back with a vengence today. We'll keep our fingers crossed.

And I may try to lay down when his nurse comes today, my eyes are burning.

Monday, November 23, 2009

Just in time for Thanksgiving

What would a holiday be without wondering if your going to spend it in the hospital. Isn't it sad that that is how we live? I think so, but its so true.

Jaxson is definitely coming down with something. It started with this coughing. Today I took him to get a monthly blood draw and he started wretching. Luckily his nissen held it all down. I vented his toobie and got 60 cc's of formula out. There shouldn't be that much in his belly, thats why we run it over an hour. His tummy can't tolerate much in it. So thats my second sign. When he gets sick his gut just shuts down.
Tonight he has a fever of 101.5, lots of junk, and horribly fast respirations. So far his sats are holding on his normal oxygen, but we are just getting started with this. He wakes up, coughs for a minute, then goes back to sleep.
We'll see were we are for Thanksgiving this year.

Oh the coughing

Jaxsons giving us the peace sign.

This coughing thing has started again. Its making me crazy. We had one good week of sleeping all night. Now this coughing is back. Since we're new to the trach thing, I don't know if this is common or not. I know he's not sick. No fever, no increase oxygen need and no increase in secretions. Just this dry, hacking cough. I decided against using the nurses at night because he was sleeping all night, but this coughing seems to be a frequent thing, and this momma needs her sleep. Now I don't know what to do about the nursing. I hate to get them at night and then the coughing stops and they just sit around. Ugh..
Also he still has this big piece of granulation tissue under his stoma. His ENT put silver nitrate on it but it didn't seem to take any of it away. And a new thing I noticed was when I change his trach out, I pause for a second to look at the stoma and make sure it looks ok. Well the last two times I did that his hole closed over when he took a breath, and he was gasping for air. The scary thing is he shouldn't be gasping for air, he should be able to breath through his nose and mouth if the hole is blocked. I don't know what this is about, but its pretty scary when I'm changing that trach out. I've got a call into Kris, the trach guru. She knows every kid in this entire valley that has a trach. And she knows everything there is to know about trachs. Hopefully she calls back soon!

Saturday, November 21, 2009

The serious cuteness from last night

First of all, we want to thank everyone who came last night. We had so much fun. And I feel like such a dope, but there was a present in a green bag that had these cute jammies in it. I don't know who it was from in the chaos of the party. Jax wore them last night to bed. They are so cute because they are big boy jammies instead of baby jammies. So he looks like a big boy. So please let me know if you gave these to him so we can say thank you.

Jaxson opening one of his presents.

And sweet baby Kaelyn, who we've all been dying to meet. The tiniest one of the bunch, and soooo precious. Ya holding her didn't help the baby girl need I have!

Sweet little Preslie was all smiles last night. I was so lucky to get some great smiles, usually she only gives me crusty's.

Little Justin always has smiles.

And of course Carter and his great faces. My father-in-law loves him!

Jaxson and Auriana.

by the end of the night most kids were pretty tuckered out.

Oh, mom, I'm done partying tonight. Whew, rough day!

Friday, November 20, 2009

Happy Happy Birthday Baby!!

Today is the day. The day we celebrate the life of one sweet boy we never thought would get this far. I thought I'd start with his video montage of his first 3 years of life. You've probably seen it before, but its the fastest way to tell his story if you don't already know it.

So you can see he's one miracle boy! This last year was rough. It started right in January when Jaxson aspirated and stopped breathing in the grocery store. He took an ambulance ride to the hospital were we decided his nissen probably wasn't intact.

So in Febuary, just one month into the new year he had surgery to redo his nissen that had failed. We also put tubes in his ears and finally got an accurate hearing test. Which of course showed his hearing is not great.

Before Febuary was even over he went back into the hospital for a couple of days with RSV. Luckily he breezed through it. Just two days later we were back, thinking he had a pulmonary embolism. So we started March in the hospital as well. Thats when we found the SVC vein was almost totally blocked, and we started thinking of how we were going to repair that.

It wasn't all bad though. We decided we needed to get away and took our first trip of the year to California, our home away from home.

The next couple of months were spent in doctors offices trying to figure out how we were going to fix his SVC, his face was getting puffier by the day.

In June he had his second surgery of the year. His cecostomy tube was placed. A one hour surgery turned into 3 hours when they could get no access, finally needing to do a cutdown in his left groin.

It seemed to take him forever to recover from that. He had pain for weeks, and we wondered if putting the tube in was the right thing to do. All this time still waiting for Boston to call about his SVC.
We had a BBQ at our house because Denise was here from California. She got to meet a lethargic, sick baby. He had no shirt on because he vomited on himself in front of all his friends.

We decided it was break time again. It had been a long year so far, so in August we escaped back home to California. We saw our best friend for the second time that year. Our little Zoey.

Back home, back to the hospital. In Sept. he had surgery to see what his pressures were and to try and balloon the SVC. Thats when the trach talk got serious and we realized that was our only option. His whole body was now puffy and he was in serious heart failure.

His oxygen needs were getting out of control. So not even a month after that surgery, we were watching them take our baby down that long hall for yet another surgery.
His tracheostomy.

But now, after a long year of constant hospital stays and 4 surgeries, he's celebrating his 4th birthday healthy! My amazing little fighter that shows me how to truly be strong.

My little miracle boy!


Happy Birthday
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