Friday, September 24, 2010

Leaving on a jet plane!

Bright and early tomorrow we are leaving on a jet plane to bring our baby girl home! We are going to be posting from her blog while we are gone. So join us over there to see how things are going and pictures of our beautiful girl!


Wednesday, September 22, 2010

Jaxson's got mail!

Look what came in the mail for Jaxson today!!

I'm so excited that Jaxson gets a wish. If anyone deserves a wish, its my little miracle boy!

He gets this special note, and a little castle with something special inside.

Its a key! This key opens the wishing room door at Make a wish. Thats a secret room for children to throw a coin in the pond and make a wish.

I talked to our wish granter today. We are going to call when we get back and we'll go do his wishing ceremony with the key.
We've been trying to think of a good wish for him. Thats a tough one for a child with severe cognitive delays!
I think we are going to do Disney World. Even though we do Disneyland a lot, the make a wish "Give kids the world" is supposed to be super cool. Jax loves music, and characters, and people. We are going to see if they have swimming with the dolphins, because Jax loves the water, and dolphins are supposed to be very theraputic for special needs kids.

Monday, September 20, 2010


Last night we saw mother nature at her worst, and we saw the best in people! A fire broke out in the mountain just south of us around 2:00 pm. This is the picture looking out from our house yesterday afternoon.

By nightfall, we couldn't breathe, our eyes were burning, the winds were fierce and they were blowing smoke and ash directly at us! The fire was moving down into homes so fast and we were terrified for our friends that lived in Herriman, the city at the bottom of that mountain. Auntie Boo, who you know is taking Jax some of the time while we are gone, and Emily, were in the red zone. Auntie Boo text me and asked what she should do with all of the equipment that has already been delivered to her house. His vent, concentrater, and other supplies. I told her to leave it, its not something that she needs to worry about escaping with.
Ray and I were up until 2:00am, watching the news, and checking facebook, because thats where our friends were updating. We could even see the flames from our neighborhood, and the smoke smell was in our house, so I can't imagine what they were going through.
We got a couple of pics from our house. The didn't turn out great, we could see it better with our own eyes. The camera couldn't capture it as well. And this first picture that is blurry actually shows the flames the best.

I woke up this morning expecting the worst. I couldn't believe when I looked outside and saw blue skies! The winds had stopped early morning, and were now blowing the other direction. No more houses are in danger right now, and we have heard that only 4 homes were destroyed last night! I can't believe it! I expected hundreds of homes to be burned, but because of the hard work of the firemen, they only lost 4. You can see pictures of the ground charred all around houses, but the houses are untouched. We are so thankful that no one was hurt, and our friends are ok. It was an extremely scary night!
I'm calling home care to see if his equipment needs to be cleaned. Auntie Boo said this morning that inside her house smells like a campfire, so his vent may be compromised. We are just glad they are ok, and they are still in their house this morning!

Saturday, September 18, 2010

Crazy days!

These last few days have been seriously crazy. I know I have so much still to do, but I wander the house aimlessly, my brain trying to decide what to do first. Then nothing gets done! Makayla's crib is up, and that room is about ready for my nieces that will be staying there while we are gone, and then for Makayla herself!
Carter has a nasty cold. I call it the back to school cold. The bad part is now Jax is junky. I knew he was going to do this right before we left. I'm just praying it doesn't get any worse than it is now. My ped didn't seem to concerned, she said its just the Rhino virus going around. Rhino virus seriously lives in Jax body, it comes up on every VRP he ever gets! The last two days he's been super junky, but no oxygen increase or fevers. Pray it stays that way. If he's sick the day we fly out, I'll go nuts!
His albumin level is low again. Cardio thinks its just because he's got this cold, but I noticed his puffiness before the junky cough started. This is another frustrating thing to leave behind. We'll recheck the level Wednsday, to see what it does. But if it gets lower while I'm gone then he'll need to go in and have IV albumin.
The good thing is I signed up for this online health center where I can see all of Jax labs, x-rays, and talk to his ped through email. This will be really helpful when I'm out of the country so I can see whats going on with him and keep in touch with my ped.

Thanks again to all of my friends, you guys are my rock!
And to all those that only want to stir up trouble, go elsewhere! I'm not putting this blog to private because that would be what you want, and there are far to many people that come here to narrow it to 100. This is not only my journal of our journey, but a support group for all things special needs. Things are not always kicks and giggles in the life of medically fragile special needs. So if you don't like the whiny posts, don't come back! But trying to tear us apart will only make us stronger! Period!

Wednesday, September 15, 2010

Getting ready

I plopped Jax in the front seat because I had to buckle his car seat in. Daddy grabbed the camera because he thought he looked so cute, its not often that he is sitting up so tall!

My emotions are all over the place today. You wouldn't believe the emotions involved in adoption! Some days I'm so excited to go, to hold my baby girl, and to see a country that I would have never visited on a vacation. Other days I don't want to leave my boys, I think of every little thing that could possibly happen. I know parents leave their children with family all the time and go on trips. But we've never done that yet, so its new to us to. Our boys do just about everything with us. Also, this trip is so far out of my comfort zone its not even funny! I do think that's a good thing, it will make me stronger, and make me realize that I can survive being in another country. One good thing, I think we are on the same flight as another RR family, which will be really nice. We can go through customs together, and have another American family to talk to!

I know I am prepared as I can be to leave the boys, especially Jax. Although the boys will miss us because they've never been away from us for more than a day, they will have so much fun with my sister that they don't see often. Their cousins will be here with them, again, they only see them once or twice a year. It will be like a big vacation for them too. All of Jax stuff is ready for us to go. We are getting another vent, and all his supplies set up at Auntie Boo's house for the days she has him. She knows his medical history really well, and she's been coming over and doing his routines with me. She's also taken him for the day to remind herself of how to take care of him. She is coming with me to my ped's office today to meet her, because they will be in close contact while I'm gone. We are doing some labs today, because his tend to be off, so we will try and fix that before I go. Brandon is going to come down when my sister has Jax. He will answer any questions she may think of, and do vitals on him to make sure he is as healthy as he can be!

But yesterday I was getting paranoid that he was going to get sick while we are gone. Mostly because I realized that we are in the beginning of flu season. Flu shots are being given at the grocery stores already. It doesn't help that I talked to a friend that has a daughter thats been sick. We were talking about chest x-rays and rocefin, that just made me super paranoid. Again, if he gets sick, he is in good hands. There's nothing I can do if I was here that I can't do over the phone. My ped is in control of his care. We started his tobi treatments, just trying to do everything we can to keep him healthy.

I have my chronic mom way of tweaking his equipment to make it work for us. He can't use a nebulizer, because he needs to have oxygen bled in, he desats without it. I tried plugging his tubing into his concentrator, but for some reason it wasn't working. There must be not back pressure control on the concentrator. So I had home care bring me out some E tanks, I bought a high flow regulator online for a mere 30 dollars. Wala, an oxygen neb!

Friends, I just ask for extra prayers over these next couple of weeks. They are so helpful, and I know that it will keep me calm and collected as we go on this adventure to bring our girl home!

Monday, September 13, 2010

Daddy's home!

Daddy came home last night, and we were super excited! He did not pass the test he took, he was extremely disappointed. But we don't care, not too many people pass it on the first try, he can go back in two months and retest. If he has to transfer with his job to get us to Cali then we will do that, and he'll get back into school down there. I have not doubt that his dream job will come true, you just have to keep trying! Its not like going and interviewing for a job, there is a written, physical, and grueling interviews to go through!

Auntie Boo took Jax for the day yesterday, to practice for while we are gone. Man that was hard, I don't know how I'm going to survive weeks without my boys! I went to Tanners school Friday to try and get him settled before we leave. Hopefully the things we put in place will help, and the teachers will keep it up. There's no reason for him not to be in a public school, he's doing really well, there's just a few quirks with him. He doesn't like to go outside for recess. Its just too loud, and too many kids. Same thing with the cafeteria. So one teacher is going to let him eat lunch in her room, and the other teacher will let him in her class for the second recess. I also was going to talk to his ped about his med. His anxieties seem really high right now, so I wonder if the med he's on is working for him. We may have to change that. Keep your fingers crossed that he continues to well in school.
Speaking of Tanner, his babies have opened their eyes! Look how sweet. The picture of the black one is not great, but he is so cute! He's totally black, the perfect Halloween kitty!

Saturday, September 11, 2010

Where were you?

Do you remember where you were on Sept. 11? I will never forget. I was in bed, I had a two week old baby boy, and was exhausted from sleepless nights. I heard the radio that Ray was listening to and heard about a plane. Ray woke me up and told me about the attacks. I will never forget the chills and the tears as I watched those buildings fall on live TV. To this day I cannot believe it happened, I cannot believe that those towers are not still watching over New York City.
RIP to everyone that lost their lives on that day. You will never be forgotten, and you will forever be our hero's!
I found this video and I had to post it. Its from a family that lives in an apartment 500 feet from the WTC. Its not graphic, I would never post that, but its very real, so watch with caution. This is what everyone was feeling that day, caught on video.
Very surreal.

Thursday, September 9, 2010

I'm so lucky

Daddy left for California today. We miss him already! But we know this job would be fantastic for our family. Its just me and my boys this weekend!

How did I get so lucky with my beautiful boys? Their so amazing. So compassionate. Yesterday we were in Walmart, and a guy in front of us was in a wheelchair. He was kind of jerky, and would be a little scary to little kids. Not my boys. They talked to that guy like he was just like them. They looked past the wheelchair, slurred speech, and jerky movements. That's my boys!

About an hour after daddy left, Tanner told me that he needed to call him. He told me he'd forgotten to say goodbye to someone. So he called daddy, and I guess put one of the kittens up to the phone. Ray could hear it meow through the phone.
Duh, he forgot to say goodbye to the kitties! At least Tanner didn't put each one up and make him say goodbye!

Carter's hair has gone golden from the sun. I love it!
He told me that he lets kids go in front of him in gym because he always wins and other kids aren't as fast. So he lets slow kids go in front of him to give them a chance to win. Oh my sweet little surfer dude!

The boys asked if they could have a sleepover in Jax room again. One of these days I'll have to leave Jax off his vent, and bring his pulse ox in the family room and let him have a sleepover with his big brothers.
How did I get so lucky?
My boys are the best!

Wednesday, September 8, 2010


Sorry friends, I was playing with the settings on my blog and accidently put it to private! We are up and running!
Oh and I bought my plane tickets to Eastern Europe today.

Tuesday, September 7, 2010

Day at the zoo.

Yesterday we went to the zoo with Jessica and my boyfriend Jonah! The boys were so helpful. Jonah took right to Carter and they walked hand in hand. They would help push strollers if Jonah had a meltdown, and they were great babysitters. I love my boys!

Jonah was recently diagnosed with autism. One thing that reminds me a lot of Tanner, not liking noises. Jonah would cover his ears if there was music playing or loud people.

My boyfriend showing us his great signing!

Dippin dots are so yummy!

Riding the train.

Jax on the train. Look how red his hair is in the sun!

My own sweet autistic boy!