Tuesday, March 30, 2010

Does life get any better?

With the crazy, busy last couple of days of going, going, going. I have to stop and look. Does life really get any better than this. (Maybe throw a little girl in the mix!)

Monday, March 29, 2010

Daddy's home!

Me and the boys spent the weekend doing a whole lot of nothin! It felt great!
Saturday we did go to the park with Max. The wind was a bit chilly, but it was nice to be able to go outside finally.
Jax was not digging the sun in his face.

I really wish Jax could interact with other kids. It makes me so sad and really upset when we go to playdates with lots of kids and Jax just lays there while all the other kids play.
Also, we've decided we want to stick with adopting strickly a Down syndrome girl. At first we wanted any special needs child. But we have a special place in our hearts for DS kids. And thats what the boys want. And lately they've been saying they want a baby like Zoey and Ella. Tanner told me he wants a baby that can "talk" like Ella. And when we played with Max, Tanner said he wanted a baby that would "play". Basically what they are saying is they want a baby that does baby things that Jax has never done. Sit up, laugh, play, that kind of stuff. I really want to give that to the boys. We have our home study in for a baby girl with DS that is to be born in June. Thanks to Maureen for sending me the link. They told me it could be about 3 weeks to find out which family gets her. I have no idea how many families are in the running, but I'm extremely nervous. I'm finding that its almost harder to adopt a DS baby than a "normal" baby. It makes me happy that so many people see their potential and want them, but of course its not good for me when I want one too! If this doesn't work out we are seriously considering whether we can make Reeces Rainbow work. There are so many kids that need homes, and its obvious that kids here in the US can easily find homes. I have a sweet girl in mind that I found. I guess she had a home and the family fell through. Little Daria. She would fit perfectly into our family! We'll see, I'm getting my baby girl cravings back again. I was getting into my closet and one of the bows that I bought fell to the floor. I had put all my baby girl stuff in the closet, but seeing that made the girl hunger come back. Pray that this birth family see's that we would be perfect for this baby girl!
And of course if you see any baby girls that need homes, send them on over please!

Daddy came home last night. When we went to pick him up you'd of thought the boy's hadn't seen him in a month! They were so excited!

Friday, March 26, 2010

A little bit of a fog.

In somewhat of a fog the last few days. Could be that the weather is just gloomy. Spring can come anytime now, anytime.
Daddy left this morning for the weekend. He has a big job in New Mexico. Not looking forward to having him gone with a potty training puppy and 4 crazy boys! But I better get used to it, because if he gets a job in California he'll go out and I'll be stuck here selling out house. He also heard that one of his colleagues in California is transferring. So a position may be opening.It will get us down there until he gets on a police force. So this is a trial run I guess. Along with losing all my nursing care, we found that Ray's car needs 400 dollars worth of brake work done. Yikes! Bad things always come in 3's. Hoping the 3rd thing is not going to cost me a lot of money!
But truly life is good. Jax is doing really well right now. He still has coughing moments when his tracheal malaysia acts up, but he's on baseline oxygen and trying to roll like crazy! The puppy is doing a great job as well. We really haven't had any accidents on the floor, although you can't let her out of your sight for a second, so that can be a pain when your trying to get things done! But she's catching on.
Mondo is doing great in baseball. I'm pleasantly surprised. I think his skill he had when he was little is coming back out. And we are lucky that he got on a great team. Granted its the Yankees (boo) but the coaches are fantastic and the kids treat him like an equal. They've even given him a nickname. Ray ray is what they call him. We had a rough day with him yesterday. He was heatrbroken that our nurse Brandon wasn't coming out anymore. The boys loved him. He played with them and helped Mondo with his math homework a lot. Mondo's teacher called yesterday because he was really upset at school. (yeah when I say he's sensitive, thats an understatement) But I think Brandon is going to come to some of their baseball games.
Nothing new on the adoption front. Except for the fact that I'm now reconsidering Reeces rainbow. Somehow I always go back to their site. The faces are right there, all I have to do is say yes, and their mine. I found this sweet girl that looks a lot like Jax. Then I noticed that she has over 8,000 in her account already! Wow that would be a big help. I still don't know if we could afford it, I'm not the greatest fundraiser person. Plus, I still don't know what we'd do with Jax while we go out of the country. It still may not work, I have a lot of soul searching to do with it. Plus the thought of flying overseas scares the begeezes out of me. I'm not a huge fan of flying, and flying over the ocean terrifies me!
So I'm praying for a quiet, sunny weekend, me and Jax are going to go grocery shopping today while the boys are in school.
How can the weekend be bad with this sweet face around?!

Thursday, March 25, 2010

This is one pissed off mommy!

The puppy loves his big brother!

This is some serious bedhead! What do you think he was dreaming about?

Why the title of this post? We lost our nursing care yesterday.
Yep. No care.
So now I get no relief from my son that is 24 hour constant care. What else is new? Do mommy's ever get a break? Nope not even on weekends!
It surprises me so much because I have fantastic insurance. And they've never denied anything that was a necessity for Jax. But they pay for 90 days of nursing care and thats it! They expect medicaid to kick in or you pay out of pocket. Yeah, because us moms of medically fragile children have money pouring out of our ears!
And not everyone qualifies for medicaid. We do have a waiver here, but they only take so many kids at one time. Jax is on that waiting list, right now he is number 15 on that list. It will be at least 6 months, probably longer to get on. And the lady at the medicaid office told me we don't have the Katie Beckett waiver here. Even though its a federal waiver, Utah opted out of it. How nice is that, our state really loves their special needs kids, don't they? Thats a nice kick in the crotch for us because we are trying so hard to move to California... if we lived there he would automatically qualify for their waiver, and double coverage comes with that. So he would essentially have 3 insurances! Diapers would even be payed for! Remind me why I still live in this state were the only childrens hospital almost killed my child? I feel like a horrible mother that I still have to take him to that hospital. I'm seriously considering dropping everything and just moving now. Life would be so much easier.
But we are going back down in April and daddy is testing with a sheriffs department down there. Pray for him that he does well on the test and we can be on our way there!
Sorry for the whine fest today!

Wednesday, March 24, 2010

The bloggers challenge!

Ok dear friends. I've been lacking on posting pics on the blankie blog, so here are some more cute kido's.
But when I was on there I noticed that we only have 20 followers on the blankie blog. We need to spread the word on the blankies. So my challenge is for you to go over and become a follower of the blankie blog! Spread the word, add the blankie button to your blog. Click on the highlighted blankie or click on the blankie logo with Jaxsons cute face on the left side of this page.
We have sent out over 150 blankies so far! We've been to Africa, Australia, England, Canada, and soon New Zealand! You don't know how much joy these blankies bring to sick kids, and even their parents. I just got an email from a friend that requested a blankie for her nephew. He got the blankie right before he went in for his 3rd open heart surgery. His mom held on to the blankie while he was in surgery. A comfort for her!

I don't like to beg for donations, but there is a donation button on the blankie blog if you would like to help. It definitely helps, all the money for the blankies comes out of mine and my helpers pockets. Also, some people like to go out and pick the fabric themselves, so they can see the finished product on the blog! If you'd like to do that we get 1 1/4 yard. Flannel material, two pieces, a front and back. And we can use any cute material, boy or girl, we get requests for everything. We try to make the blankie specifically for each child based on colors and things they like.

Here's the blankie video again if you haven't seen it. I would like to do an updated one with new blankie recievers soon!

Thanks friends, lets get more followers on that blog!

Monday, March 22, 2010

Dusting off some pictures.

I was going through pictures this past weekend looking for pictures of Ray for his birthday post. I found some pictures from Jaxsons horrible 4 month hospital stay, right around the time he had his open heart surgery. They were pics that got put away, ones that didn't go into his baby book. Not that they are much different, it was just a reminder of that scary time. And next month will be the 4 year anniversary of when he was first admitted for that looong stay. It seems so long ago but yet so vivid. I still don't know how our family survived!
I'll give a short history on this stay. So much happened but I'll try to be brief, since I didn't have a blog back then, you can't go look it up. I wished I did have a blog then. I do believe its important to remember even the bad stuff. Like it would be nice to be able to go back and remember this was the day a new line went in. Or this was the day he was reintubated for the 4th time.
Jax went into the hospital on April 17th, 2006. He was 4 months old. He was admitted for respiratory distress, something he'd been in for every month since his birth. AV canal defect and his huge PDA was making it impossible for him to keep his sats up. His left lung never stayed inflated because his heart was taking up his whole left chest. I can't believe his cardiologist told me at birth that they wait to fix this defect until they get bigger. But most kids I know with this defect never gain weight and struggle until its fixed. After being on the floor for 4 days, on night he really went downhill and was sent to PICU. They put him on c-pap but quickly had to intubate him. That was the beginning of hell. He initially had pneumonia. But that of course caused heart failure. So picc lines and art lines went in, and then of course the infections started. After one month in the hospital he still couldn't stay off the vent. He was finally infection free so we scheduled his open heart. But the night before surgery, he spiked a temp. I remember crying and thinking he was never going to be well enough for surgery. They decided to take him to the cath lab, thats when they saw that his PDA was huge. The doctor tried to close it, but it was unsuccessful. After another two weeks of not being able to extubate him, they decided to do surgery to close the PDA. That was his first heart surgery. It was also unsuccessful at keeping him off the vent. They would extubate him and he would last maybe 24 hours. We were in our 3rd month in PICU when he had his brain injury. The brain injury was from severe hypoglycemia and hyperpyrexia (critically high temps) He had a fever from a drug reaction, and they weren't feeding him because he had a chylothorax (fatty fluid in the lung) and he was on blood thinners and was oozing from all of his IV sites. So they stopped them all. When I got in that morning he had no nutrition, IV or otherwise going into his body, and his heart was racing and his temp was high. As soon as I was about to ask about no fluids, the lab called. His glucose was 17! But they believe that it bottomed out to 0 if you think of the time it takes to draw the lab, send it, and the lab to read it and call. So they pulled glucose of the crash cart. I was fuming, little did I know what it did to the brain. Then they let his temp get to 108. Seriously, this is with a nurse by his bed ALL OF THE TIME! Ok, I'll keep going because I could go on forever about the brain injury. Anyway, we demanded a care conference and for the head cardiothoracic surgeon to be there. They couldn't do his open heart for at least two weeks to try and let the brain heal a little. But they had to stop the chylothorax. So he had his second heart surgery to try and stop that. So now he has the bra-line scars on both sides. But that indeed dried up the chylothorax and they were able to pull the chest tube and finally get him extubated. But it was touch and go. They kept him on c-pap 24 hours a day with the exception of 2 hours when he had CPT. And there were multiple times that they wanted to intubate him. We were able to keep him extubated and on c-pap for 9 days until he had his open heart.
This first pic is him on the c-pap. He had gotten so fat from continuous feeds and zero movement for 3 months. Plus all the fluid he retained with his sick heart, and his huge belly from constant air. These pics are dark because its a disposable camera. We didn't have our digital back then. It was a bingo gift one week (the hospital played bingo every Wednesday and gave the whole hospital a gift. After getting tons of stuffed animals they had to be creative with his gifts)It had a Christmas logo on the bottom. Thats why the pics are uneven, I cut off the bottom.

This was the day of his surgery. They took his c-pap off so we could all hold him before he went in. This is my mom holding him.

The first few days after surgery.

His million pumps. 18 to be exact. The back and front were filled.

Slowly losing a little puffiness in his face.

He stayed on the vent for 10 days post op, and finally was able to be extubated. He was in the hospital for 120 days, all but 14 days were spent on the ventilator. He had 4 major surgeries, and countless procedures. I can't remember how many different picc and art lines he had. Or how many CT's and MRI's he had. Sometimes its good to look back at these times and just thank God for your miracle baby!

Sunday, March 21, 2010

My baby girl, kind of!

First of all, happy Down syndrome day to everyone. I can't believe what Jax and all of our friends have brought to my life. Amazing strength and love. How lucky are we to be parents of these beautiful angels?

I'd like to introduce the newest member of the Rugg family. She is indeed a girl, and a cute one at that. Not exactly the girl I'm looking for but she'll do for now!

Isn't she so sweet? Her name is Lilo and she is a miniature pinscher. She was an impulse buy yesterday in the Walmart parking lot. A birthday present for daddy. It was perfect because I hadn't bought daddy a present yet because everything he wants is to complicated for me to get myself. Like camera flashe's and lense's. He has been wanting a German Shepherd, we have a shepherd mix right now. But if he has to leave to go to California to start working, he doesn't want to leave two big dogs for me to take care of (although I would feel quite safe with them around!) So when he goes to California she will go with him and keep him company while he is away from his boys!

I know it was probably totally crazy for us to get her with our already hectic lives. We've bought a book on how to best train her, because min pins are stubborn dogs, and have special ways to be trained. She is definitely showing her stubbornness already. We take her out to go potty and she doesn't go, so she goes back into her kennel. We do this 3 or 4 times before she realizes that she isn't coming out until she goes potty. But I'm proud to say we have had no accidents on our floor yet, and last night she did amazing! We put her to bed in her kennel about 10:00. She cried for about a half hour, then went to sleep. I didn't hear a peep out of her until 7:00. I think thats pretty dang good for a tiny puppy in a new home!

Min pins are the only toy dog I will buy. They are known not to be as yappy as most small dogs, and not nearly as aggressive and snappy. They are very smart and great with kids. She's already adjusted to our big shepherd and tries to take him on in a battle of whose the baddest doggy around!

Saturday, March 20, 2010

Happy Birthday Ray!

Happy Happy Birthday daddy!
Today you turn the big 40! Yes my 40 going on 22 year old.

I could not find any pictures of him as a child. So we'll be pulling those out and doing a post on them for sure! You can't get out of that one!

It's funny because we met when you were trying to set me up with another guy. We ended up going out and after that first date I knew I would marry you someday!
Our wedding day was so fantastic. (and those glasses are the best!)

We had our first little boy, your namesake! Your little boy you taught to play baseball, and that followed you all around like a little puppy. He loves his daddy.

We continued to add little boys to our family. Each one different, each one a daddy's boy for sure. You teach them how to be proper boys, boys that will stand all day at a door holding it for everyone coming in!

Then we added a special baby boy to our family.

One who taught us more about love and patience than any other!

One who would test our marriage. And prove to us that we are a team, a team that loves each other and our boys more than anything in the world!
One that you would sit at his bedside for hours, after working all day long. To keep a watchful eye on our sick little boy.

Down syndrome became your love. Then you met a little girl that I think I'm now competing against. A little girl that stole your heart, the only one that I've seen make you cry with one kiss or one squeeze. One that made you want to add a little Down syndrome girl to our family of crazy boys!

One of these days soon we will get our little Down syndrome girl. Until then you will continue to nurture your boys how to be men. Play with them and comfort them when their upset. They couldn't have a better daddy!

We love you more than anything in the world.
Happy Birthday daddy!!

Friday, March 19, 2010

a whole lot of wheezing going on!

We've got some serious wheezing going on around here. With a house full of asthmatics, it seems to all happen at once! The only people not stricken by this nasty disease are me, Mondo, and so it seems Jax. Which is quite funny because Mondo and Jax look more like me and the other two are little Ray lookalikes! Although I'm sure Jax would tell you he'd much rather have asthma then the trashed lungs he has now!

I'm not sure if this is turning into colds all around, or if its just spring allergies, but the boys have strict orders to stay away from Jax, and his room is off limits!

It also makes me quite grateful that we were able to weasel another nebulizer out of our insurance company. I wanted one that was battery operated and had a car plug in. I don't know how many times we've been away from home and one of the boys has an asthma attack. For some reason the inhaler just doesn't work all that well for them. And this way when they are both sick, I can double team them!

So our little spot in the corner of the boys bathroom that is the designated drying spot for Jax trachs and other supplies, has now been taken over by drying nebs, and masks!

We are trying to avoid a repeat of last month. If you remember one sick puppy with full respiratory failure and 12 days in PICU!

Wednesday, March 17, 2010

going goth

Jax and I thought it would be fun to go a little goth today. So he's sporting his Jack t-shirt we picked up at Disneyland and his skull and crossbone leggings. I just wish I had daddy's camera, the pictures are so much more crisp.

Here's a little wink for you mom!

He also decided to work on his dance moves! Man black really is thinning, is it just me or does he look super long?

Look at that point!

He also decided to keep working on that rolling. Man he tries so hard!
(sidenote, the lovely bruises on his legs are from lovenox shots. I promise!)

He's getting all the way over more and more, which means I really have to watch him because he usually gets his trach nose off when rolling. And since he can't hold his head up and he can't get off his belly, his trach gets pushed into the carpet. We don't need suffocation, or carpet fibers in his airway.
Oh, oh, almost! I feel so bad for him. I think he wants to move around and his little body just doesn't know how. I'll leave the room and he'll be in a totally different spot when I come back!

Tuesday, March 16, 2010

No relief in sight!

Well that was one of the most unproductive appointments ever! First of all, the ENT's here are known for their extremely slow clinic. Its an all day event to go there and back, and its a lot of sitting in the waiting room. Good thing about sitting though, we saw Bugg! A new blog friend that lives close by! So me and his mommy had a nice chat.
But basically the results are that there is nothing that can be done. He just needs to grow and get bigger..
Yeah, he hasn't grown in the last 3 years. My boy with the deceiving fat cheeks caused by his SVC syndrome. The surgery is to fix the narrow part of his airway, there is no surgery to fix tracheal malaysia. If tracheal malasyia is bad they trach them. Well he's already trached. His airway is hitting the trach, causing him to cough, the more he coughs, the more the airway flops, and on and on and on! They can do lidocaine in a neb to make the airway numb and help the cough, but thats not something you can do all the time. The ENT was pulling other things out of his butt to try. Like making the trach wider, pushing more on the airway and keeping it open. Both the lidocaine and the bigger trach will make his voice nonexistant. Nice! We haven't even been able to figure out how to talk around these trachs yet. Well the trach nurse went to put the bigger trach in and it didn't want to go in. The whole time she's pushing, he's not breathing, she finally gets it in and causes him to bleed like a siv! Blood is pouring out of his trach and his mouth! She's suctioning his mouth and I'm using my suction to suction out his trach. This whole time he's not breathing!


So now we are home, with nothing to fix this hacking cough. We got him cleaned up and in a fresh shirt and he was out for the count. Rough day!