Tanner is a poppy!

Some pictures now that I have a computer.. I need to get my photoshop on this computer.

Mondo's first day of school. The hair is making me crazy! He wants to grow it out, the do he wants I call the Justin Bieber!

I do think it will look cute on Mondo, he looks a lot like Justin, but the in-between phase makes me crazy!

Tanner and Carter on their first day of school! Tanner did amazing! He cried all night the night before, but that day he went like a champ!

The baseball is still making me crazy! These coaches are horrible, and if we were staying in Utah I would pull him from this team. Why, you ask? Well as horrible as it sounds, if you want to get noticed, you can't be known from a team that didn't win a single game and was known for being bad. It will follow him every time a coach looks at him. If he wasn't serious about baseball I would just be happy he's playing, but thats how sport works. Since we are moving to California, I don't care too much that he's on a horrible team, except for the fact that it doesn't let him play to his full potential!

Look at my cute pitcher!

Just another cute sleepy photo of Jax! I know, just what you needed this morning!

Tanner is a grandpa today! His kitty Jasmine, had kittens. Daddy's not thrilled, but its our own fault. I waited to get her spayed because I was trying to decide if I wanted to declaw her. Then we got caught up in summer, and now look what happened! I knew she was pregnant, and as of right now we have 5 kitties. two dark ones like momma, a calico one (you can see its back in this picture) and two orange ones.

Look at this gorgeous orange face! I told Tanner he could keep one. I think we'll have to pick an orange one, their so gorgeous!

I'm alive!

Sorry friends, the computer died and I'm just now getting a computer back. Man I can't believe how much our lives depend on the internet!
No pictures yet, hopefully some tomorrow. I need to figure out how to download them on this new computer.
We have been busy starting school, and trying to get ready to travel to get Makayla. We haven't gotten our date yet, but it will be 10 days tomorrow so anytime! I can't believe how much work it is to leave Jax here. I'm trying to get everything with him worked out because I know when we get our date, time will fly! I've been working on getting power of attorney to someone in case something happens and he ends up in the hospital. My sister will be here watching the boys, but hopefully we'll have enough nursing care for Jax that she won't have to do much with him. I'm giving her power of attorney for all the boys, but I'm also giving power of attorney with Jax to my friend, Jax's auntie boo! She actually knows the most about his medical history and how to take care of him. She's stayed in the hospital with him before and she's even taken him overnight for us. She will be the one making decisions if he goes into the hospital so my sister can stay home with the other boys. I'm confident Jax will be good. With the vent and the new meds, unless he gets a virus! Ugh, knock on wood. I'm going to have a billion papers taped to his door. What his morning routine and night routines are. In case a nurse doesn't show and my sister needs to do it. Also his comfort things and what he likes, things that only mommy knows!

We didn't have the yard sale yesterday. It was supposed to be rainy all day, so rather than take the chance, we chose to push it back one last time! Pray next Saturday is nice, its our last chance to get it done. So if you still have stuff to donate, there's still time!

School is going amazingly smooth. Mondo is loving Junior high, we'll see when the math homework starts coming if he's still loving it! Tanner did fantastic as well. He cried until 11 the night before so I thought the first day would be utter hell. But he didn't even cry, and he's been fine since. Carter, of course I never have to worry about Carter! He can handle any teacher, and instantly makes friends!

Our summer is officially over, whaaaaaa

This post is kind of all over the place!
Jax had some follow up labwork and chest x-ray yesterday. I'm bummed I didn't get to look at the x-ray with my ped, her computers were acting up. She called me and told me she didn't like the x-ray with him being on the vent. She said there are still a lot of areas of collapse and junk! So today I call pulmo and probably up his vent settings a bit.
Last Friday we got to meet Bella's family! We didn't get to meet Bella, because this was a quick trip, and like Jax, you can't take Bella on a trip without planning! Her sisters are very sweet and really loved on Jax. We really need to get to Texas next year and meet our Bella!
Look at that smile he gave Bella's momma!


Mondo starts school tomorrow, and the other two start Thursday. I'm actually feeling quite relaxed today. I'm getting more excited than nervous for Mondo. Although I know the first day of junior high is scary, its also a lot more fun than elementary school. If he can make some friends, he'll do great. Today we walked over and found his locker and walked to his classes. Tomorrow only the 7th graders go for half a day to get used to the school before the older kids come. I like that idea!
I was also terrified of Tanner and school this year. His resource teacher that has been our savior the last two years is gone! I just knew it would be a fight to get him to school again. We went there today to see who his and Carter's teachers were. I went to talk to Tanner's teacher and give her a heads up. She is fantastic! Very outgoing, and took right to Tanner. She told him to pick a secret code that would let her know that he is stressing out. So he puts his hand on his head and that is their secret code. I really hope this helps. I think she'll be great.

Now for some baseball venting. Yes, I'm a little league mom! We wanted to get Carter on a superleague team to build up his game. The team he made is a brand new team, the coaches coached the all star team. And they are horrible! They play the boys all over the place, so the kids never get a position down. Then they don't know where to go. We had boys crashing into each other in the game! Seriously. And some of the kids just goof off. They've only played two games and they were killed both times. Its frustrating because after he made this team we had multiple offers for other teams. If only we'd known, I guess hindsight is 20/20. And I don't know if they kids are rubbing off on him because Carter played the worst he's ever played too the last two games. I hate that its bringing his skill level down!
Ok done with that, keep your fingers crossed that Mondo does good tomorrow and he makes some friends. Lord knows he needs them!

Notes to self

(Not to self: Lagoon is NOT Disneyland! They do not have rides for autistic and handicap children. Its best to leave them home and just take the older kids!)

We went to Lagoon today. We wanted to go with our local Down syndrome group last Monday, but I got the days mixed up and we missed it. We don't go to Lagoon a lot because it is way overpriced for what you get. But since we hadn't been in a few years we decided to give it a try. The day was beautiful, just a few white fluffy clouds. But as we headed the hour away, the clouds increased. Tanner had a fit from the moment we arrived when he saw those clouds. I kept telling him that they would go away. Nope, they got worse, and when it lightning and thundered, that was the end of Tanner. We stayed for a whole hour, and got in 3 rides! Thank goodness its bounce back time. So next Sunday we take Tanner and Jax to aunt Krissy and just go with Mondo and Carter!



Notice Tanner with the hands over the ears!


(Note to self: Yelling at the boys while taking pictures of Jax will produce a super pouty face to get on camera!)



(Note to self: The ventilator has been the best thing in the world for Jax!)

I can't believe how good Jax looks since getting the vent. I can visibly see his breathing relax when I put him on. He sleeps so much better, I just wish we had thought of it sooner. We noticed that he still didn't sleep well even after we trached him. We chalked it up to brain injury kids don't sleep well. Although its scary that he is getting to the point of needing a machine to breath, its nice to have him healthier right now.
Another thing I've noticed since the vent is he is much more interactive. I don't know how the vent can help that, but he's smiling like crazy and his vision seems better. He is now looking at faces if you are close to him!
These new tubes snaking into his crib are a lifesaver!

Happy Birthday Tanner!!

Tanner, Tanner, my gosh you turn 9 today!!
Wow, my other special needs boy! Diagnosed at two with autism, but has come such a long way since. Looking back, if I knew then what I knew now about autism, I would have seen it when he was a baby.
My best baby, never, ever fussed. Could entertain himself in his swing for hours!


After not talking one word at two, our speech therapist is the one that saw the other symptoms of autism. After getting into Pingree school for autism for preschool, they totally turned my baby around. He went in not speaking one word, and came out not able to shut up!
Jenny McCarthy is wrong, you can't cure autism. He'll always have his autistic tendencies. But they are manageable, and there's no reason why he can't get married and have a full life.


Now he goes to a "typical" school, with the help of a resource teacher that has taken him under her wing. I'm very worried about school this year though. This resource teacher will no longer have him, so I'm just hoping that we can keep him in the "typical" school setting without her. She would let him eat lunch with her, instead of the noisy cafeteria. And if there was a cloud in the sky, he could stay with her inside for recess.
But man he's turned into a handsome young man. Often he is called the mini me of Ray. (I really need to find Ray's kindergarten picture, you would seriously die!)

Tanner is going to be such a great big brother to Makayla. He loves Down syndrome babies. Ella is his girl, and he wants to bring her home to be his baby sister!

Happy Happy Birthday my little blonde babe. Keep showing the world you can do whatever you want to! We love you!!

submitted!!

I can't believe it, we were submitted today! I can't believe in a few short weeks I'm going to have a girl!!
AAAHHHHHHH!!!!!!
Its amazing. I'm going to go buy a small girl suitcase or duffel to take her clothes over. Of course I'm going to be making sure she has a bow for each outfit. Yes, I'll be one of those moms!

Yesterday we went to another DS get together. Finally we made it to one. Met new friends, and had a great time!


Now that I know that we are submitted, I'm a little freaked out about the fundraising. I've been so crazy lately that we haven't thought about it at all!
The yard sale is next Saturday, the 28th. If you have anything to donate to that, we'd love it. You can donate yard sale items, anything for the food, baked goods for the bake sale, or even just money in the chipin for us to buy those items.
I've also had a few people want to donate things, so we may have another small auction. So if you want to donate something to the auction, please email me.
laceyrugg@hotmail.com
We are getting down to the wire here, help us get Makayla home!!

Doggy Dilemma

Our cute little black mini pinscher is going to end up costing us a pretty penny! We noticed that she is limping, on both legs, at random times. And sometimes she looks like she has no control over her backside and she just falls. I took her to the vet yesterday and it turns out that her back legs are crooked. Its causing her knee's to dislocate. If they both dislocate at the same time, then her bum falls to the ground. This can only be surgically repaired. The cost....900 a leg!!
Crazy!
I'm trying to pay for a trip to Eastern Europe in the next month. I don't have 1800 to spend on a dog!
We are trying to decide what to do. The good news is it's not urgent. She is not in pain. But it will continue to get worse if it goes unrepaired forever.
Oh what to do!!

Sometimes roller coasters are fun!

Sometimes roller coasters aren't so bad. I can't believe how quickly emotions and attitudes change since having Jax. Not only is special needs a roller coaster, but throw in the medically fragile, and that's one mighty roller coaster! I went from worrying about losing my baby last week, to enjoying every minute of his smiles!
One day everything is falling apart, and the next, they are falling into place!
I found out from Jax home nursing company that he will be put on the waiver starting September 1!! I had no idea, the lady told me that if he got the vent he would only move up to number 11 on the waiting list. But I guess they go by how long you've been on the list, not by how long you've had the vent. So starting in September he will get a ton of nursing hours! Jax best buddy Brandon is coming back! Remember Brandon was his nurse after he was trached. We lost him when our 90 days of nursing was up. He was going to come down and stay with the boys while we went to Eastern Europe. Until we were delayed so far that he had to go back to school! When he found out Jax got nursing care he jumped at the chance to come back. So he will be our night nurse Sun-Thurs. nights!
Yipeee!!!


Tonight Ray's fortune cookie said "Keep your eyes open on Thursday for a special opportunity". And mine said "This year family is your number one priority". You know whats happening Thursday right????
Go to the adoption blog if you don't!
My emotions for bringing Makayla home are all over the place right now too. I'm sure its totally normal....... someone please tell me I'm normal!
Yesterday I was terrified that our airplane was going to crash, that our children would be left orphans themselves. I thought I was crazy for leaving my children and traveling to another country. I was wondering how the wings are securely attached to the airplane, and why they move so much, what if they fall off?!!
Then other days I'm totally excited and it can't come fast enough!
Whew, roller coasters are definitely an adrenaline rush!!

Crash course in Jaxson 101!!

Before we get to Mondo's Jaxson lesson, I wanted to post some pics from our first outing with Jax out of the hospital. His favorite, swimming. He looks unhappy but that's just while he's getting used to the water!

We even got Tanner in, and enjoying it! With his autism, he hates the water, and its usually a fight every time we go swimming, so this was a nice change.

Sitting in shallow water, just chillin!



Ok, lesson time. We are lucky that our kids are getting a little older, and Mondo's at the age were he can babysit. My shy oldest is such a good big brother! He knows how to suction, do feeds, and other medical junk. But one thing he's never done....changed a diaper!


Sounds crazy I know, but Jax is a predictable pooper! He only pee's big with his diuretics, and since his bowels don't work, he never poops on his own. So Mondo's never really needed to change a diaper. Well, since being on the vent, we are still trying to get his distended belly down to normal. And in the last week, he has pooped on his own, because of all the pressure in his belly.
Me and Ray went to dinner and a movie last night. At the very end of the movie, Mondo called. He said mom, Jaxson pooped and its on the carpet. I told him to change him and he said. "I don't know how to do that!" Whoops, I guess he's right! I told him to go get a towel and put it under his bum. And get the wipes and a diaper and change him.
We hurried home, and actually he didn't do too bad for his first time. The diaper was on good, but the explosion still showing!



So Jax gets a night bath, and props for showing up his big brother!

Mondo holds no grudge, but how could you with this sweet little face?!

Home sweet home!

We're home! Exhausted, but home!
Getting ready to go down for his echo this morning.

Dressed and ready to go.


He's battered...

and bruised...

and pale...

but home. That's were we want to be. Right now we are not concentrating on how much time we may, or may not have. Although some tests will be ordered in the coming weeks. As of his today his echo was beautiful! The two new drugs and vent are helping tremendously! And of course every one's prayers are truly heard.
Last night was utter hell! The vent kept me up all night. He breathes so shallow when he is asleep, that the vent wasn't sensing his breaths. If we turned the sensitivity up, it over-cycled and beeped that he was breathing to fast. If we turned the sensitivity down, it didn't sense breaths at all and beeped apnea. I finally fell asleep for about an hour at 4 am. If the vent does this tonight, we will be going to the trach mask for the night. Right now we have the monster t-bird vent, because he only has it at night. Our RT is trying to get us the LTV. Much smaller and more portable, and he thinks it will be more sensitive.
Its a good thing we came home on a Friday, because we will need all weekend to recover! His room is a disaster as we try to fit even more equipment into it. I'm not kidding this time when I say we may be trading him for the master bedroom! We've added 3 new drugs costing an extra $60 dollars a month to his already huge regimen. I sat on the phone for an hour at the pharmacy, arguing with my insurance about a drug and that his doctor pre-authed it. Pulmonary hypertension meds are outrageously expensive and have to have a doctor get it approved. I'm just glad we got it worked out, we can't wait until Monday to get these meds filled!
Here's our newest addition to the medical machine family. Right now its sitting on Jax Ottoman. We need to go out tomorrow and get a table for it, ideally with more storage under it, as we've run out of that as well in his room.

He's not tolerating bolus feeds right now. We switched his g-tube to a GJ-tube before we came home. The vent gets so much air in his belly. So we will feed him through the j port at night and let the g port vent the air out. Hopefully this will help his distended belly go down, and he can go back to bolus feeds soon.
Tomorrow we are going to go swimming, and Sunday we want to go up in the mountains and see some falls. Just thankful to have my baby home again, after another close call!

Last night (knock on wood)

Tonight should be our last night. The plan is still to go home tomorrow. It was a fight with the RT's because we are supposed to room in after our last class. But the attending fought for me to get us home tomorrow. After my nervous breakdown this morning, finding out that once again, our dossier wasn't submitted. When I got to the hospital this morning I looked like I'd been run over by a truck. My eyes were puffy and red. The poor attending thought something serious was wrong. But she knew she had to get us home ASAP, before I need the looney bin!
They are doing an upper GI today to see if his nissen is intact. And tomorrow before we go we will do another echo to see what his pressures are after starting drugs and the vent at night.
Jax looks good. And I can't wait to get home and do summer stuff again. Just live life, not live in a hospital. Thats what I want for him!


I bought him a portable DVD player that I could put on his bed. It seems to be a big hit!!