Jaxsons Fight

The whirlwind continues!

2012-01-27T19:38:00.002-07:00

Our whirlwind of doctors appointments continues!
You know we finally found a good pediatrician. As a matter of fact, we've been emailing back and forth because he wants me to stop by next time I'm there to get him set up with the medical home program.
Last week we had ortho. The good news is no surgery for now. He wants to wait until the last possible minute to do surgery because basically, Jaxson scares the hell out of him. The bad news is it will be needed, and he is wanting to see him every six months to carefully track the progression of not only his legs, but his spine. When he looked at him, he had red marks on his spine from pressure in his seat. Yesterday I say what looks like the beginning of a pressure sore. Yikes, that really freaks me out. I can't even begin to imagine how they would want to fix his spine! If it can even be done!

Yesterday was GI. I loved her too, but I knew I would because she was recommended by a friend. She asked me why I wanted to get him back on stomach instead of intestine feeding. My only real reason is because continuous feeds are not the most convenient thing to do! He'll never eat by mouth, so it really doesn't matter if he never uses his stomach and it shrinks. Again, she doesn't want to do surgery on him. I'm not sure why he scares people so much. With the trach, surgeries are a breeze! She wants to keep him on J feeds, and we are going to increase the hourly rate as much as we can so he can have more time off. Our only worry is J feeds isn't going to help aspirating on stomach acid, which is what he did in September. She switched him from zantac to prevacid, because its much stronger, and we wait until our pulmo appointment and get her opinion on fixing the nissen. I really do hate waiting, because with our luck he'll have a huge aspiration episode and end up in PICU!
I also asked her about what will happen when his GJ needs to be changed. I told her about our horrible experience in October at CHOC, where they put the wrong tube in and made a huge ordeal of sedating him. She wants him sedated and her to do the first change, because she's going to do some scopes and look at his esophagus and stomach. But after that interventional radiology should be able to do it.

Next week continues with cardiology and neurology. Fun stuff!
Everyone have a great weekend!

The boys snuck one of Arina's clips in Jax hair when he was sleeping!

My little stinker!

2012-01-25T10:07:00.002-07:00

I love to leave Arina's hair down. Its so beautiful, but it hangs forward right in her face, unless you use some kind of clip.
Yesterday I tried just pulling one side up and using a clip. Instead of pulling it up with a band, and then a bow. Although I had to fix it multiple times, she looked so gorgeous and so grown up!

But the little stinker refused to let me take a picture! No smiles, nothing. I had to basically chase her around with the camera. Oh what a toddler! So although still gorgeous, not the greatest of faces from my little stink!

This last one screams "mom, leave me alone!"

5 times a charm!

2012-01-23T18:05:00.003-07:00

Wow, after a fabulous weekend with the kids, sitting on a Sunday in a quiet house, everything seemed to crash down. I found out some of Arina's pictures were taken. Then the nasty comment from a person that assumes they know me, but gets the facts wrong!
I'm not going private, because I can't let these people win, and because there are too many good people that wouldn't be able to see why I started the blog in the first place! Awareness. Moms that are going through the same things will not feel alone! *By the way, if you ever want to email me privately, feel free to do so! Sometimes you just need another mother to talk to!

When I have more time to sit down tonight, I'm going to watermark my pictures. I'm not sure how to watermark past pictures though. I have like 3 years of blogging pictures that are not watermarked!
Nasty comments I try to quickly delete and move on. Its hard for me, because I can be quite confrontational when I feel I'm being attacked. But really, its pity I feel. If they are so educated and so smart, why are they going to blogs that they "claim" they don't like. Sounds like they have way too much time on their hands! But like I said, a lot of adoptive families, mostly through Reeces Rainbow, are determined to put a stop to it, which is why we put the tracker on our blogs. It literally shows us down to the persons street! I haven't heard from other families if it is working yet to deter people, we'll see!
After all, this sweet face is why we keep on blogging!! (this is one of my all time favorite pics of Jax!)

Today I had yet another appointment with a new ped. The morning did not start well. It was raining, and I forget that in Cali people do not drive when it rains, they creep. Then half way there my GPS died. I was going into Los Angeles, to a place I'd only been twice, and I had no GPS to tell me where to go!
So of course, we were about a half hour late to our appointment. Luckily, they let us stay.
He was amazing!
5th time is a charm right??
Right off the bat he gave me his email and pager number. He got us a referral to pulmonlogy, the only specialist we didn't have yet. He asked if there was anything we needed right now. He is going to get Jax set up on the medical home program, which will be a huge help as well. He is also the medical director, so I know he's the best.
Its amazing how at ease your heart is when you have someone good behind you. Now if we can make it to our neuro appointment without needing the ER first. Seizures are getting bad!

Let the freak out begin!

2012-01-22T17:21:00.003-07:00

Ok, this blog is about 30 seconds away from being put on private until I can have someone help me watermark my pictures and make it so they can't be copied. Some creep has stolen pictures of little Down syndrome girls and put them on his site. Here is the original post. My friend emailed me and told me that she saw Arina on there. I've been there and seen other friends children, and I'm contacting them now. This is utterly disgusting!
Not only do we have creepy people leaving nasty messages on adoption blogs, now this.
By the way, nasty message leaver, I've been given a tracker that has been put on my blog so I can track the URL's of these comments. People are tired of getting them and are bound and determined to put a stop to it! They've already contacted the police and internet task force, who is the one that gave us the tracker!
So that comment you just left, has already been tracked! Thanks!

Friend, I do have photoshop!

chillin with the littles!

2012-01-22T13:44:00.005-07:00

My house is super quiet right now. Daddy took the boys to a movie, and its just me and my Little's. Both got a nice warm bath, and a rubdown of baby lotion, so they are absolutely delicious! Quiet is weird to me, I like noise, and hustle and bustle. Although I admit I like being able to get on the computer and not be rushed.
Its been a fantastic weekend. There is so much to do in Cali, that every weekend we try to do something new. I'm the queen of being able to do fun things, and still save money. Last weekend we went to Universal Studios. I had a coupon for 15 dollars off each ticket, and if you buy a days pass, you get 2012 free! So we are now season pass holders to Universal for less than the price of a one day pass. Our local Costco sells movie passes for nearly 5 dollars off normal price. Killer deal since movies are me and the hubby's favorite date night activity. I also heard that the Queen Mary is now offering kids free passes. That may be on the docket for next weekend, Mondo is dying to go see it! In two weeks we are going to take a weekend trip down to San Diego. With Jax Make a Wish, we got a passport that gets us into some places for free. So we will go to Legoland and the San Diego zoo for absolutely nothing!
Friday we went to Disneyland. Of course that's not new for us, but always a treat. The best part of the day was not getting hassled at needing a wheelchair pass for seven people. Six is the max, and I'm always arguing over the fact that we have seven people in our immediate family! Trust me, I'd rather not need the wheelchair pass. I'd rather my son be able to run around play like his little sister.
Speaking of little sister, I let Arina out of her stroller to run around, and she attracted crowds of people. Its the funniest thing, she's like seeing a famous person. People were offering her popcorn, they were wanting her in their pictures, and just stopping to watch the adorable girl!

Tanner was shooting both guns. He wanted Jax to beat his big brothers!

More than likely we are going to commit to Ruth this week. After a nice weekend of thinking, its what we are supposed to do. This time it will be a little different. Ray will be traveling without me. We will be doing married adopting individually. Many people have done it, but it is something that can make the process harder. We need to make sure he takes lots of pictures of the family, and he wants to take some video of Arina, so they can see the amazing little person she has become. But you just never know what kind of judge you are going to get.
Now its time to start thinking of some great fundraising ideas!

The curler experiment!

2012-01-17T10:03:00.008-07:00

Last night we did an experiment.
An experiment you don't usually try on a two year old, but remember, this is a momma that has been waiting nearly 13 years to have a girl!
Yesterday I bought her some pink/spongy curlers. Remember, the curlers your mom used to put in your hair the night before a dance performance? I didn't even know if they still existed.
They do!

Ready mom! Lets do this!

Uh, this thing is supposed to make me beautiful??

All done! Never underestimate the power of the ipad!

Wow, this feels wierd!

I thought maybe a shower cap would keep the curlers in their place, and ward off any grabbing!

Surprisingly, the cap was still in place in the morning! But my shower cap plan backfired! While everything stayed put, her hair was still wet!

We waited a couple more hours, and even used the blow dryer. But much of her hair was still wet when we took the curlers out!
Bummer!

I still call it a success! All curlers survived. Next time we'll find a hair net to keep them in place, and hopefully they'll dry!

When is the time ever right?

2012-01-15T20:36:00.005-07:00

You may know that we are thinking of adding another princess to our house. We actually knew we would add one more princess not long after Arina was home. We talked and decided that after we moved, and had been in our home a year, we would start talking about it again.

Ahem, well we are not in our own home, yet the talk is here.
You can't help yourself, I mean, how can you?

This little girl screamed every time we bathed her for the first 3 months she was home. I felt like I was traumatizing my baby just trying to get her clean!

She had never had a bath, never in her life. She was quickly scrubbed down with a rag, because there were multiple children, and only a few people to bathe them. When I think about the life she would have had, I cringe. That is not something that leaves your mind!

I blame daddy.
Well, it sounds like a good excuse!
But he did fall in love first, and he dragged me right down with him.
With this little peanut, Ruth.
I wish I could make the picture big, but my computer refuses! Her Jaxson fohawk is what first sucked me in.
Funny thing is, daddy found her first, but she is exactly what I wanted. I wanted a child that needed a home a little more urgently because of medical problems. I want to use my experience, take children that other people are a little more afraid to take, because of my training and experience. She has a heart condition, and is said to have malnutrition. But every heart mom knows what malnutrition is in a heart kid, heart failure.
My first worry is a big one. Our last adoption we only raised about 4,000 of the 20,000 we spent on the adoption. We had taken a home equity loan to redo our yard and a few other things, and were able to use some of that money. Not long after our adoption, people started raising crazy amounts. I always joke that we adopted at the wrong time. I mean, people were raising 15,000+ on a single giveaway! Unfortunately, she went up on Reeces Rainbow after the Christmas Warriors started, so she missed out on that extra fundraising. Thats not going to stop us from the child we feel is ours. We just don't have the home equity loan to dive into if we don't raise the full amount. Scary thought!
For all you that may not know, most of us adoptive families have plenty to give to an additional child. But not too many people have 20,000+ sitting in a bank account to spend on the initial costs. I am not touching money I have in emergency accounts, as no one should. That is needed for just that, an emergency!
And of course we haven't bought our house yet. When I said we weren't adopting yet because we are still renting, many people asked why? Well, I guess I don't really have to, many people that adopt are renting. And while I feel like this house is too small for us, I do know of some adoptive families that have many more children in the same square feet we have now. So I guess I'm not really sure why that matters. The house will probably be bought and moved into before we are even able to travel, since this process takes months.

So we are giving ourselves a little time to talk, ponder, and pray, if this is the right time. We can't wait much longer though, because this muffin doesn't have the time to waste!
Just like this other little muffin, I'd like to get her to a loving home ASAP

Loves and kisses

2012-01-13T10:57:00.004-07:00

Time for a Jaxson update.
The pediatrician search continues.
*sigh*
I was so excited to go to the one at Childrens Hospital Los Angeles, but when I got there, it was a dirty, overcrowded clinic. Yikes, I was immediately thinking this is not the clinic I want to be spending a lot of time at. Because its in the hospital, you see residents, and they report to an attending. The resident would be considered our pediatrician. I didn't like that at all. I know residents need to learn, and I'm ok with them coming in and doing their thing. But too many residents make decisions without consulting the attending, and I don't like that at all. We've had too many near tragedies because a resident said to do something, and the attending had not yet given the ok. Plus, the attending that did come in, I did not like at all.
I know I'm not going to get what I had in Utah, she set the bar way too high. But I do want someone that I can have a close relationship with.
Today I'm going to call UCLA's pediatric department. Its much cleaner, and not overcrowded. They also do medical home, which is what we had in Utah! I pray that UCLA will be the answer, we really need someone good!
We have tons of appointments coming up. We are going to be busy busy, trying to get this boy tuned up. Neuro is one I'm anxious to get to, and see if they agree that starting up the keto diet is a good idea. I want these seizures under control, before we get to a bad place again! GI I'm also anxious to see if they are going to fight me about fixing his nissen. I don't really want to feed him into his gut forever, and aspirating on stomach acid can happen again when it comes right up when he retches! The scariest one for me is ortho. That one is next week. His legs are terribly crooked, and I'm afraid that they are going to tell me his spine is just going to get worse. I just don't know what to expect from that appointment, except I do think a leg surgery will be in the future. A leg surgery also means casts on both legs for weeks. Not a fun thing at all! Cardio will be interesting. Because I hated my cardio in Utah so bad, in a way I fear that the cardio here will tell me a whole host of problems that were missed. That's just because I know he has a vsd, and I fear they are going to want to fix that. One thing at a time. Yesterday we did some bloodwork that endocrine wants, to check the function, or lack of, of his pituitary gland. Bloodwork is such a pain with this boy. I plan on fighting for a port for him. I just hope our new ped doesn't go against it. He has monthly labs, not to mention that he has no access if and when an emergency happens. In October, he blew through 3 IV's in 22 hours. It would have been more, but his horrible PICU nurse didn't check his IV all night, and it had infiltrated and proceeded to fill his entire arm with IV fluid! She's lucky it didn't cut off circulation to his arm!

For now, we just keep on keeping on with lots of loves and kisses. Because lets face it, that makes it all worthwhile!

On the move!

2012-01-10T18:11:00.005-07:00

This princess is one busy girl! Now that she can walk, she wants nothing to do with her stroller.
She is go go go go!

Last night I went out and bought her a leash. That way she can be out of her stroller and still stay safe!

Jax mobile update

2012-01-09T09:05:00.004-07:00

Remember our dilemma with Jax mobile being broken? The mobile he's had for 6 years!
A lot of you sent links for a new mobile, and I decided that it is indeed time for a new one. The old one will be packed with his stuff that I keep. And actually we may keep the music box for hospital stays, since that music still puts him right to sleep!
A friend and fellow Reece's Rainbow adoptive parent emailed me and said she wanted to be the one to get Jax a new mobile.
The mobile arrived last Thursday.

Its bright and fun. Now when my sweet boy looks up, he has some fun friends to look at. That's important when you can't play with toys, and your eyesight is limited. He needs some great visual stimulation.

We have one mesmerized little boy!

Number 2 it is!

2012-01-06T18:21:00.002-07:00

It seems pretty unanimous that number 2 is the favorite! I agree. Number 1 is just plain beautiful, its always been a favorite of mine! But number 2 just shows her little, silly personality! 4 was my next choice!
Once I get it submitted, I'll let you know when the voting begins!
Thanks for your help!!

Pic a picture!

2012-01-05T09:46:00.004-07:00

Ok friends, we have a crisis on our hands!
A cuteness crisis.
If you heard, some families that are adopting have come together and are having a photo contest to raise money for their adoptions. Pure brilliance, I think! I'm going to have to remember this one when we adopt again!
Anyway, we all know that I have the most beautiful, blue eyed princess around! Plus the winner gets a 150 gift card to Target! That would be fabulous since that is the only place that sells Jax liquid suppository's, and those babies are 6 bucks a pop!
I've picked out a few pictures, but can't decide which one to enter. I actually had to just stop looking, because I keep finding good ones, and then it just gets harder to pick! Pick your favorite. I'm going to number them 1-4! Ok, I threw a number 5 in there, because that is the original one that someone mentioned I should enter!

1.

2.

3.

4.

5.

Wowza!!

2012-01-04T19:47:00.004-07:00

Yes, this is indeed me! The summer after high school and the end of drill team I had these taken because I was trying out for the Jazz girls. (Utah Jazz dancers) I ended up not trying out because my private studio, with all my friends started an older girl group, a group that I competed with when I was 7 months pregnant with Mondo.

Wowza, how I'd love to look like that again!

The Kate Gosselin complex!

2012-01-03T09:46:00.008-07:00

A few months ago, when I was telling Ray that he didn't hook up the feeding pump right, he called me Kate Gosselin!
I was super offended at first, but then realized that in a way, he was right!

You remember that mom that we all hate. The one that treated her hubby like a child. She was horrible!
I actually used to love that show. As a matter of fact, I have the first couple seasons on DVD. Those kids are gorgeous, and the cute things they did was what captured my heart.
After my hubby teased me by calling me Kate, I started thinking. I understand why this women was so neurotic. She had 6 babies at once! If you don't stick to a strict schedule, or if something is out of place, it throws everything off.
I was never like that, that is, until I had Jaxson. He is so much work, and if something isn't done right, it indeed throws everything off. Over time with all his care, I realized that I was getting quite neurotic as well.
Don't get me wrong, I don't justify the awful things she has done, and I think the way she treated her hubby was just plain wrong. And I do think that her neurotic behavior is above and beyond even a normal person. I'm simply saying to a degree, I find myself like her.

On the other hand, I can be the most disorganized person around. Sounds weird with Jax I know, but its true. I have all of his meds in my brain. I just know what he gets, without having to write anything down. I know his cares and feeds, and exactly what time they need to be done.
My problem is with appointments and sending bills in. I'm terrible!
Since moving, and having life thrown into a bit of chaos, I have done the same with my organization.
Appointments, referrals, and doctors phone numbers are written down on random pieces of paper. Usually then, they get lost or thrown away!

Having a house with two levels has really thrown me for a loop! When I walked into the boys bathroom to an army of empty formula cans on the ledge, I realized I need to get my booty into gear!

I throw all of his cans into the recycling bin. But since Jax room is upstairs, I put the formula in, and then promptly throw the can in the bathroom, thinking I'll take it down when I go. Then there is sits until I have enough to build a pyramid!
I'm off to a good start, I'm in love with my new shelves I bought for his supplies. Although I need another one, I love how everything is so organized.

Next thing, and most important, I need to get me a good day planner!
I had one, but still managed to write things down on random papers and lose them. But with TONS of new doctors appointments in this next month, with all new doctors, I really need to get with the program.
I guess this in a way is my New Years resolution. I need to make sure that the day planner is always with me. I need to make sure if I write a number down on a scrap paper, I transfer it to the day planner as soon as I'm off the phone.
I need to get as neurotic with writing in the day planner as I am with Jax cares!
Wish me luck!

2012

2012-01-01T17:32:00.003-07:00

I slept right through the New Year! I guess not totally. I got up a few times with a beeping vent, and the sound of fireworks woke me up. Other than that, I was out!

Looking forward to a great 2012.
For the little warrior, he didn't have a horrible 2011. A few hospital stays, a surgery, but that's about it.
We want 2012 to be as uneventful. A couple of big surgeries are a possibility. But another possibility this year is him going to school.
I know, pick your jaws up off the floor! He is doing so great respiratory-wise at sea level. His sats are beautiful. I know he would benefit so much from being able to go to school. The first time he gets sick, that may be it for me. But we can't live unless we at least try! My sweet angel deserves at least that much!

The princess, of course she had a great year! Being with a family, she learned so much. I expect 2012 will be the same for her. Exploring and learning new things. Maybe preschool in the fall, I'm not sure if her birthday falls within the deadline, we'll see!

Maybe a new sister in the works for this year. Not positive about that one yet either. Our first goal is to get our new house bought. Then we will work on the sister part.

Here's to a great 2012!!!

Just because.

2011-12-30T16:38:00.002-07:00

Some fun at the park cuteness to start your weekend. Have a great New Year!

The Mobile

2011-12-28T10:11:00.005-07:00

Jaxson has a big, bright mobile. This mobile has been singing him to sleep since birth. My mother in law gave it to me, and it has been in his crib since. Its made multiple hospital trips with us, because the hospital mobiles are just plain crap!
When we moved, I put the hanging part in storage, and took the base that plays the music. He didn't have a crib, but needed that music to go to bed.

When we were unloading the truck, one of the boys handed me this piece.

A piece had broken off his mobile!
Then in the house, Ray handed me this..

Another broken piece! Sheer panic set in! How can I fix this? Its got to be fixed!
I can't bear to part with this mobile.
I know it sounds ridiculous, but I haven't been able to find a mobile yet that is as great as this one.
And I think for me, its the sentimental value. Everything with Jax has a lot more meaning. Clothes that he grows out of, I can't bear to part with. This mobile has been through 6 years of some scary stuff with us, and I can't let it go!

I'm going to be pulling out some crazy glue, and maybe even some tape!

Being a medically mommy really does make you crazy!!

You gotta love a Christmas with no medical drama!

2011-12-26T09:52:00.009-07:00

What a fantastic Christmas! It was definitely weird, mostly for Ray and I. 75 degrees on Christmas is definitely not normal for us! Also having almost no family and not doing our typical Christmas day stuff was weird.
All that matters was we were all healthy and happy, especially a certain little one who is not often healthy! I kept waiting for it to happen, even in the middle of the night Christmas Eve. But it didn't!
Last year was miserable. We were in the ER with Jax until 3 in the morning, only to find out he had a fractured femur. A fracture we, to this day, have no idea how it happened. It also came with a new diagnosis of severe osteoporosis. His bones are that of a child with brittle bone disease. He was in pain and upset all day Christmas, and it made it miserable for me.

A few years ago he was sick in the hospital. I was hosting the Christmas Eve party, so I had to run home and do that, and then run back up to the hospital and try to convince them to let me take him home for Christmas. His labs were still wacky, and they fought me tooth and nail! But I prevailed, and he was discharged around 11pm Christmas Eve!

This year, besides keeping an eye on these yucky seizures, he was a good boy!

We left out our treats for Santa,

Which he took full advantage of.

Arina was so excited to see a big, pink bike!

She knew exactly what to do with the presents.

Jax got to open his presents. Toy Story stuff all the way for this superhero!

It was just a lazy day in our house, without the running around to the grandparents to do. We played our two new dance games for the Wii. I'm telling ya, its a great, easy way to exercise!

Merry Christmas!

2011-12-24T11:56:00.005-07:00

Merry Christmas from your two favorite munchkins!!!

Speaking of adoption, a year in review

2011-12-21T10:55:00.003-07:00

There's nothing more amazing than seeing the transformation of a child that was doomed to a horrible life and probably early death.
What an experience, seeing this country that I never thought in my wildest dreams I would ever travel to.
Yes it was also hard, I don't think anyone who has done it would say it was a piece of cake. That would be a big fat lie!
I posted a bunch of videos, from in the orphanage, to just yesterday, and the transformation is amazing!
I love this first video! Partly because she was so tiny and sweet, but you can see her starting to emerge from her shell before we even got her out of her country! The first couple times we visited her, she just sat there, staring at her fingers. In this video, we get a smile, and you can see she wants daddy to keep bouncing her on his knee!

Just a few days home. Big brothers already bringing this tiny girl out of her shell!

We get laughter for the first time a few months later!

Now the beginnings of a naughty toddler. A lot more mobile, and a lot more sassy!

Last week, now a walker, and best of all, a dancer! She would not perform for the camera though, the little stink. So at the very beginning you see her dance, and then she stops. In the second video its a little better, but she still won't perform as good for the camera!
(sorry for the shakes, I had to dance to get her to dance!)

We changed the life of a child. But more importantly, she changed our life!

Its utterly amazing!!

Un-freaking-believable!

2011-12-20T09:57:00.004-07:00

I'm so angry right now I could spit!

A mother that has taken care of a baby for a year, has been denied the right to adopt him!

You may know that we are thinking of adopting again. Not for another 6 months to a year, but it is down the road. I've been really struggling with how I want to adopt. My heart is always with the beautiful children on Reeces Rainbow. I go to the website and want them all! But I also would like to adopt a child right in our own state. A child that is in the system and has also been left behind because of their medical need. I know in the foster system, the idea is always to try and reunite a family if at all possible. I was telling our home care RT the other day that wouldn't it be great if I could take a child, and slowly train the family how to do oxygen and feeding tubes and such, so they could eventually do it on their own? She thought that was a great idea, and thought I should bring it up!
I'm a little hesitant about the state systems though. You know what happened in Utah when we tried to adopt a baby. We were denied without even getting a chance. The social workers never even met us in person. They just assumed, with no medical background, that we couldn't care for this baby with Jax. A baby that had no feeding tube, no oxygen, just severe brain damage that they assumed left her with NO brain function. No brain function in a baby that ate from a bottle, smiled, and cooed!
I was heartbroken! Knowing this baby would not be that difficult to care for, and especially to love!
People ask why we adopt internationally, instead of in our own country...This story that made me so angry is a huge reason why!
The family of sweet Ethan, a Down syndrome boy with a lot of medical problems. I was first sent her info when they were talking about traching him. People thought that maybe I could help this family with information. They have been taking care of him for a year. When talk of a trach came about, the social workers told them he would be too much work, and they would deny the adoption. Ridiculous! You just assume families can't take care of complicated children? Its not that hard people. It makes me crazy to think that people with no medical background are making these decisions in a childs life.
Poor Ethan has been denied a transfer to Boston, where they could have helped him, and most importantly, where the family would have been able to proceed with the adoption. Now a child is going to lose the only mother and family he's ever known. How is that in the best interest of the child? A baby girl could have had a family, 4 doting big brothers, but was denied that by uneducated people.
This is why we adopted internationally. Yes, there are children here that need good homes, and you better believe that I, and many other families, are ready and waiting. But the system is failing them! The other reason is these children in other countries with disabilities, are doomed to an early death. They are neglected and left to rot in institutions. That is just plain wrong!

You think I'm a busy momma? Yes, I'm a busy momma, and I wouldn't have it any other way! My children are all taken care of, they are all given time and the love that they need and deserve. We are silly, we sing at the top of our lungs in the car to Katy Perry. We dance to Michael Jackson. We are a close family. I'm told all the time by strangers that my boys are great, when they get the door for me and everyone else at a restaurant. If my boys are around, no women will ever open the door for herself!

Seeing the joy on this face is priceless.

I can only pray for baby Ethan, and his poor family that has to walk away. I know I couldn't just walk away, how hard must it be?
Un-freaking-believable!

Jaxson Jaxson!

2011-12-18T20:49:00.007-07:00

I know talking about Jaxson and what is going on with him sometimes seems like groundhogs day. That or its just over your head and you get bored. I know this because I am major ADD, and if it doesn't interest me I'm quick to pass over.

I notice a lot on Facebook (although I'm not a huge Facebooker!) that my posts about my cute princess generate much more chatter than if something is going on with Jax. I know she is super cute, but sometimes Jax just needs those extra prayers! And with him, its not a ton of cute antics, unfortunately!

Like right now. He is being a naughty, naughty boy! My ped finally called me back, and while I was upset at how long it took, she did bring up a good point. The airway issues, in this case, is probably reflux. I don't know why I didn't think of this before! She asked about allergies, which I can safely say is not the case because we know he tested negative for EVERYTHING! But when she brought up reflux, I remembered that his nissen is not working, and that we are feeding him into his intestines because we can't trust him not to aspirate. So more than likely he's refluxing stomach acid and aspirating on it. Fortunately, the one specialist I do have an appointment with is GI. Hopefully we can get his nissen fixed quick!
He is breathing much harder than usual, and we aren't exactly sure if its because of the reflux problem. One thing with Jax, because of his severe hypotonia, he breathes super shallow. We had to turn off the alarm on his vent for low volume, because it has such a hard time sensing his breathes that it alarms all night long! That is also why his lungs have improved so much with a rate on the vent. He gets those breathes automatically, and not just sporadically when the vent "thinks" its sensing him! His sats have been really good, and we believe that is because he is breathing harder and actually getting more oxygen in. Although they are starting to drop, and he is going to start to tire of breathing this hard, if he hasn't already. I've had to leave his g-tube to drain, because when he breathes hard, he swallows air, and I'm getting tons out! Tomorrow I may recommend a blood gas, to make sure he is not starting to hold onto CO2. Its actually a nice thing to have life support in your own home. That way I don't have to take him in!

The other, scary thing....I'm starting to see more seizures. I was told the VNS could take up to 2 years to show the full effect. He hasn't had an EEG since having it placed in June, but the magnet is having no effect on these particular seizures. Jax has so many different types of seizures, that the VNS may actually be helping, but not for this kind. The scary thing is, the kind I'm seeing is the kind he had that got worse and worse until he was in status. So seeing them getting longer, has me terrified that we will be in that awful place again! Neurology here is so great, and I know they have a lot more tests to offer than he ever had done in Utah, but the referral process is dreadfully slow. We don't even have an appointment with them yet. If I get too concerned, I'll just take him to their ER, that way they have to see him on the spot!

I'm wondering if we need to restart the ketogenic diet. I hated that diet, but I'd rather have that then these seizures. We aren't sure if the diet stopped the seizures, because it was started before he fully woke up from his medical coma, but they have gotten worse since stopping the diet a year ago. And actually I'd rather have the diet, and the VNS, and be able to stop some meds that we know aren't really working anyway!

Jax is in desperate need of some tuning up! Lets hope we can get these specialists scheduled ASAP!

Its official!

2011-12-15T21:21:00.008-07:00

Well folks, its official

We have a walker!

Heaven help me! I've already found her on the computer table, and on the kitchen table eating ginger bread houses!

Time to pull out the play pen!

*and the bottle of pills in her hands?? I took an old bottle and put candy in it, because she likes to shake it. Its what I do to keep her still while doing her hair! A homemade rattle!
** Oh thank you, my anonymous friend! I didn't even think about her associating pill bottles with candy! Although she doesn't eat it, she just shakes it. I never take the lid off. I need to find a different bottle that makes great noise! It really has been 9 years since I had a toddler! Sheesh!

Superhero's in towels!

2011-12-14T11:33:00.007-07:00

Yesterday was my birthday. Happy birthday to me!
Look what my fantastic hubby gave me for my birthday!!

Let the blankie making commence! My old machine had tension problems. This will be so nice!

Because life in the medically fragile lane is always an adventure, I spent my birthday screaming at the peds office, and looking for a new doc, yet again! I first made a phone call to the ped last Thursday. My call was never returned. Friday, Monday, and then yesterday, still no phone call. I told this ped in the beginning what I expected from a doc. I can't have 4 days of no return phone call. Just can't happen. I left a nasty message last night. The girl that called me today said the doc has in her notes that she left me a message yesterday. I do get terrible reception at my house, and my phone doesn't always ring. But it always goes to voicemail. And if it took her to voicemail and she left a message. I would have gotten it. So I tend to not believe that excuse. I also told her that even if she did call yesterday, 4 days is not acceptable for a return phone call. I'm going to end up in the ER with him in the next couple days. He can not go 2 months without having his lovenox level checked. Yesterday after his bath when I was cleaning around his gj-tube, a small cut started to bleed profusely! That leads me to believe that his lovenox level is off, and his blood may be too thin. Also, he's having some airway issues. Whistling while breathing, blood tinged junk, and really heavy breathing. Since I don't have a specialist here yet, the only way to get this and the lovenox level checked stat is to go to the ER. I really, really, don't want to have to find a new ped. Is it wrong of me to expect that any ped would do the things I want? Isn't that why they go into the business in the first place! A phone call the same day is not unreasonable, especially when the first day I called, I saw her in Toys r Us on her lunch break. Uh, where was my phone call?
Argh!!

On to cuter things!
I found out yesterday, that you are never to old to clip on a towel and be a superhero!

To fly into the night....

and rescue the maiden in distress....

To take her away in your fancy car.....

And get that thank you kiss...

The dreamy look as you fly off into the sunset..

Where did my superhero go?

*sidenote. This girl always has a rash, it must be a DS thing, no?

This amazing online community!

2011-12-12T11:46:00.004-07:00

An amazing young women that has been quietly following my blog for a long time emailed me. I love it when I can find new people and new blogs. So if you read this blog and never comment, do so, because we love new friends!
Anyway, her name is Nikki, and she has traveled all over the world, working with orphans. She is working on a degree to work with special needs kids, and in December, she is posting on special needs. Todays post is about Jax, and the care that he requires. Go to her blog and check it out, along with all the great things she has done!
She also asked me if I still make blankies. This summer, she is traveling once again to India, and she wants to take a blankie to this sweet baby Emma. Oh how I would love to see this tiny thing wrapped up in one of Jaxsons blankies. That gave me a great idea! I want to make a bunch of blankies to send with her for the other orphans. If you know how to crochet around blankies, or would like to buy some material and donate it, email me at laceyrugg@hotmail.com to find out how.
I love to see how Jax has touched peoples lives. Saturday we had Jax picture drawn. I wanted a picture that shows Jaxson underneath all the tubes and his broken body.

And here it is! This picture shows Jax heart, and his gorgeous smile. That a true superhero is indeed under that broken body, and that is why he is still here, and still fighting!

To infinity, and beyond!

Have I ever said??

2011-12-09T19:24:00.004-07:00

Have I ever mentioned??

How much I love, love, love having a little girl?

How its everything I ever dreamed it would be from back when I was pushing my dolls around with my mom!
The other day it was just me and her in the car, and I cranked up the Katy Perry. She actually sang along with me! Ok, she can't talk, but she baby babbled along with me to the song. I can't wait until I can get her into dance. She just needs to be a bit more steady on her feet. Maybe next summer!

She understands the things I do. Like why I love my new front loading washer and dryer. Ok, maybe not exactly why I do, but I agree the spinning clothes are fun to watch!

I'm feeling that one more little girl needs to join our family. Me and the hubby, and even the boys are feeling it.
Not yet of course, not until I'm settled into my own home for a while. But it may be on the horizon!

Our anniversary!

2011-12-07T10:33:00.011-07:00

Another day we missed with no internet was our anniversary on Nov.15. 14 years! Wow, didn't I just graduate from high school??
I had forgotten that it was getting close, with all the chaos. But my sweet hubby didn't, and he had asked for the day off work. So what did we do? Headed to Disneyland, of course.
It was the best day at Disney we have had in a long time. It was a Tuesday, so it was super slow. Tons of characters were out, and we just had a great time!

My Beautiful boys!

Arina and her first princess picture!

Ok enough characters already, lets hit the rides!

Another first for us. Ray, Carter and I got stuck on Big Thunder Mountain! The ride stopped right on the hill. This ride freaks me out a bit anyway, because its the only ride at Disney that has had a death of a person that wasn't the persons own stupidity. For some reason I always think about that when on the ride. So stopping in the middle and having to walk off wasn't such a good thing for me!

For our anniversary we had dinner at Goofy's Kitchen, our favorite place!
I love that the characters are so sweet with Jaxson. Its like they know they have to get really close to him so he can see. And they always spend so much time with him.

Arina wasn't so fond of the characters. The ones that she could see a face, she was fine. But the big, furry ones, not so much!

This picture is my favorite! Tanner is not so fond of kisses from girls!

I wanted to bring this Minnie home with me. She was sooo cute with Jax! She grabbed his hand and put it on her face so he could feel her! Be still my heart Minnie!

And this is why Disney will always be such a magical place for our family!

Internet, wahoo!!

2011-12-05T13:48:00.003-07:00

Today we finally got our internet hooked up. So happy, I can't believe how much I depend on the computer for even everyday things!
One thing we missed while not having the computer was the birthday of a certain warrior boy!

November 20th Jaxson turned 6 years old! No party, we were on the road coming back to California from Utah with all of our stuff. Next year we hope to have a big birthday bash. Lord knows he deserves to celebrate a life we never thought would last this long.

Some current stats on our warrior.

Weight is 25lb 4oz.
Height is 36 inches.
His pant size is a 2t, and 3t for shirts. His tiny footsies are only a size 3! The same as his two year old sister.
He is absolutely tiny! Even for a Down syndrome child. We think his pituitary gland is not working, and are trying to get into a new doc to recheck his growth hormone and other levels. Another med will probably have to be added for this new find.

Jax can roll over, although its still hard for him, and it takes a lot of his energy to do it. He is grabbing things, mostly his tubes, with both hands. He smiles, and has even laughed, although you can't hear it because of the dang trach.
Even though he is still considered cortically blind, his vision seems to be much better. He now will look at people, and track certain things with his eyes. He needs another hearing test, but his hearing also seems better. He startles super easy with loud noises.
We don't really know the status of his pulmonary hypertension and his heart, as we are still trying to get into our new cardiologist. His sats are much better here in Cali. Although doctors haven't ordered it, I've been able to turn his oxygen down from .50 to .25, and at night from 2 down to 1 liter. I can even take his oxygen off for short periods and he maintains good sats. He does sometimes seem to still breathe hard, and his heartrate goes up when off for too long. Hopefully his pressures are not going up.
His seizures don't seem any different after getting the VNS. I can't wait to get to our new neuro, as they are the top in the country. I'm wondering if we need to restart the keto diet. Not my favorite thing, but whatever helps!
He is still on continuous J feeds. We will not put anything into his tummy until we see GI and see about fixing his nissen.
A few more specialists are on the list of docs to see. We will be having a whirlwind of doctors appointments in the next couple months as we get new docs and get new problems taken care of. If we can keep him from getting sick, I think we'll have a pretty good winter!

One more week!

2011-11-28T21:19:00.001-07:00

One more week with no internet. They will be here next Monday to hook everything up. I think I might loose my mind by then. Its funny how much you depend on the computer. I have a heck of a time getting specialists phone numbers without going on their website to get it!

I'm still just super stressed, which means my heart palpitations are back with a vengance! I hate them, they give me headaches and make me feel like i'm having a heart attack! I wish I could explain how stressful it is, some of you know. Even though I think my ped is going to be great, it takes time to develop the relationship like I had before. It makes me nuts that I dont have a cell number or a back line to get into. she returned my call, but I was on the other line, and didnt get to talk to her. Since I couldnt call her back, I didnt get what I needed in the first place! I dont like the feeling of him just floating in the wind. Thats not a good place to be with a fragile child. The heater to his vent is different than what we had before. The therapist said it would be better. But I HATE it! I haven't slept since I got it. It puts out ounces of water into the tubing. Even though there is a trap to catch it, some still gets to him. He actually aspirated Friday night. Luckily, it must not have been much, because he recovered on his own, but he dropped his sats and was breathing super fast. She just told me today that the heater I want has to be ordered, and will take a week. Ahh, I dont know if I can handle this one until then!

Its not that California, or Utah, or any state is better than another. Its what you go through when other places are new, and different. It takes time, and I'm trying to remember that. But its soo hard!

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Ahhh!

2011-11-22T19:15:00.001-07:00

We are back from California. Our house is a disaster, no furniture is put together. Way behind on posts, especially the birthday of a certain warrior boy! I dont have internet at the house yet. Hopefully we will soon. Stay with us friends and we'll be back soon

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A tad crazy around here!

2011-11-16T14:28:00.003-07:00

Things are a bit crazy around here right now. Yesterday was our anniversary. 14 years! Wow, I swear I just graduated from high school! And the best way I could think to celebrate was Disneyland with our beautiful kids. All decorated for Christmas, we had so much fun, even though Ray, Carter and I got stuck on Big Thunder Mountain, right on the hill, and had to walk off the ride!
We are heading to Utah tonight to get our stuff and finally get moved into the house!! Oh I can't wait. I'm so ready to have my own space, and get Jax stuff organized!
Utah friends, let me know if you want to meet up. Its a quick trip, but we'll try!!

I'll leave you with some pictures from our trip to the beach a couple weeks ago. Arina's first trip to the beach. She had a blast. the water was a little cold for her, but she loved that she had her own, huge personal dirt pile!
We kept Jax out because it was a little chilly for him, and he was still getting over trach infections.

Q&A

2011-11-11T16:55:00.004-07:00

Q. Very informative, Lacey. :) BTW - are all your littles blonde except for Jax? I always thought Jax has the prettiest eyes, but so do all of your boys AND your princess! Lovely family you have! :)

A. Its so funny, out of my four of my biological kids, two have blonde hair and blue eyes like Ray. Actually, Tanner is the spitting image of Ray, down to the broad shoulders! Mondo and Jaxson have brown hair like me, and brown eyes that change with the color of our clothes. Sometimes green, sometimes even orange. The other funny thing is that my two boys that look like Ray, are the ones that have the horrible asthma and allergies like he does. Mondo and even Jax with his horrible lungs, have no allergies or asthma, like me!

Q. I have only read your November 8th post so I do not know if you have looked into this. But since he is underweight have you had him checked for gluten issues. If he has Celiacs that would definitely effect his autism.

A. That's a great idea! I'm not sure exactly why we haven't had him checked. I've heard a lot about the gluten diet, but just never did it because he is so limited already in what he'll eat, that I didn't want to even try it. We saw a gastro doc when he was little, but he wasn't much help at all. I'll bring it up to our new ped!

Q. I'm curious, only because my sister is a compounding pharmacist. Can you get the prefilled syringes at any pharmacy? Could you get them at a compounding pharmacy and then pay the compounding pharmacy to re-package the med?

A. We did check into that, and the pharmacist wanted to charge me 70 bucks to do it! With all his meds, 70 dollars a month for that just wasn't doable. I would do that one time if I had to. Right now I'm getting in the pre filled, and drawing it out into smaller syringes myself. I'm getting 4 doses out of one syringe! Now that's cost efficient!

Things are finally falling into place, and life is calming down a bit. Let me say thank you to my wonderful trach friends who dropped everything to ship me some supplies so we wouldn't run out. The feeding supplies were no problem, as soon as they got the prescription, they sent it out the next day. It was the dang respiratory supplies and Apria that were such a pain. Apria finally said they couldn't take him, that they didn't have the manpower. Whatever that means. All I need is a delivery every couple weeks of supplies. It actually worked out for the better, because I don't have to deal with them, and I found a company, Lifecare, that will be great. She gave me some D tanks today, and she'll come out Tuesday and do his admission stuff.

We also found a great rental house! It works out perfect because we were looking for month to month, because we plan on buying soon. But no one does month to month. This house has been foreclosed on by HOA. So we will rent it from HOA until the bank forecloses, which could take months with the number of foreclosures in the state. When the bank takes over, they will give us so many days to be out. Fine with me! Cheap rent, and the month to month I was looking for!

Last weekend we went to Knotts Berry farm with our aunt and uncle we're staying with. Arina went on this car ride, were it whips you around the corner. She laughed harder than I've ever seen! I was crying I was laughing so hard at her!! She is such a funny little squirt!!

Autism

2011-11-08T19:25:00.005-07:00

I feel so horrible, Down syndrome came into our lives, and totally steamrolled autism to the back of our lives. I'm not sure why, maybe because Jax is so time consuming, but I wanted to do a post on autism for my Tanner. How he was diagnosed, and how he is now, 10 years old!

We started worrying about Tanner because at 2 years old, he didn't have a single word. Nothing. We checked his hearing, it was fine. So we started having a speech therapist come out once a week to work with him. She was the one that brought up what she called autistic tenancies. He would take a bucket of hot wheels, roll one in front of his face, drop it on the couch, and do that for hours and hours. He would also turn a car over, and spin the wheels in front of his face. When this suspicion was brought up to me, I noticed a lot of other things, even from birth. He was always such a good baby. Never, ever cried. Never played with other children, always played alone. Developmentally he was quite behind as well.
When he was officially diagnosed, we didn't really panic. Kind of the same thing with Jax diagnosis. We said ok, and moved right along with what we needed to do. We went on vacation a few weeks after he was diagnosed, and man, that was an eye opener! He screamed the whole time we were at the beach because he wouldn't touch the sand. Ray had to take him out of the Bugs life show, because the sound and lights had him totally overstimulated.
At 4 he got into an autism preschool at the Carmen B Pingree school for autism. That was what made the biggest difference for him. He started school with only a few words, and came out with full sentences. He wasn't fully potty trained until he was 6 years old. He was mainstreamed into a typical classroom with resource classes because he was so far behind, and for a couple years, he did ok.

In 3rd grade, I think because the teacher he had was not very good, it was a fight to get him to school every day. If it wasn't for his resource teacher, we would not have survived the year. I was ready to re apply for the autism school for him. The next year, his resource teacher made sure he had a great teacher, and that year was much better, and we avoided the autism school.

As Tanner has gotten older, its not really that he avoids people and eye contact. He can actually be quite social. The things I notice are, he doesn't understand sarcasm, he is very literal. You can't joke with him, because he won't understand it. Because he is so literal, he has no filter on his little mouth. This is the hardest part about his autism now. He will walk right up to you and tell you those pants don't match that shirt. He doesn't understand its not nice to say that!
Also he's had really bad anxiety. So much that we had to break down and start medication. If it rains, or is windy, you won't get him out of the house. If it lightening and thunders, sheer panic sets in. I can't get him out of the house if there are clouds in the sky. Because that means a chance of rain, or thunder.
He still likes routine. He gets cranky if we are out running errands for a long time. He also still plays alone, and if his brothers bring friends over, he generally doesn't get along with them. He doesn't have a lot of friends. He's had a couple in the last few years, but thats about it.

The funniest thing....Tanner is a fantastic dancer, and a little actor! You know they say a lot of great actors and performers are not social and probably have autism. I believe it. They are so bright and creative. He LOVES Michael Jackson, and can do all of his dances.

What bothers me is when people say, "are you sure he's autistic?" Oh that annoys me more than anything.
Yes, I'm sure!
He is teeny tiny. Carter outweighs him by 10 pounds, and is about an inch taller. I did notice that when he stood in line with his class, that they are all at least a head taller than him. That really worries me for junior high. We are also quite concerned with his weight. He has fallen off the growth chart, and I'm actually worried that he may have lost some weight in the last few months. He has dark circles under his eyes, and needs a sleep study. My ped said its common for autistic kids to not sleep good at night. I know he grinds his teeth, and even talks in his sleep.

I have no worries that Tanner won't do good as an adult. Sure, it takes him a long time to learn. He is still quite far behind his peers. But I have no doubt he will live on his own, and probably get married some day. He will always have his little quirks, who doesn't? I even see college in his future, if he doesn't get a job acting that is!!
Me and Ray have made it a goal to start attending more autism functions, Tanner knows he's autistic, and I want him to be proud, and meet other kids that do to!

*If you haven't, please consider making a donation to bring Sophia home. They have been working for so long, and I have noticed her account go up a bit since I posted about it. Thank you for that. I made my donation today!

The lottery

2011-11-06T19:54:00.005-07:00

I've had this lottery post in my mind for a while. With the problems getting Jax supplies and meds that he needs to survive, I thought it was a good time to do this post.
About a month ago I was watching this show, The lottery changed my life. Its about people who won the lottery and what they did with it. Surprisingly, only a couple stories had people totally blowing their money on mindless things. One actually tragic where a spoiled niece got into drugs and took her own life. So sad!
One that struck me was a doctor, who had a single lottery ticket that was tucked in her white coat, totally forgotten. Of course it was the winning ticket, and this doctor, who already had money, and a nice big home, now had millions more. She bought and even bigger house, and of course lots of lavish cars and other expensive, worldly items. I was thinking, sheesh, why couldn't somebody win the money that could really do good with it?
I know, I know, the lottery is totally random, blah blah blah. But still, you know at night you sometimes think about what you would do if you had unlimited cash.
This is Ray's and my plans:
He wants to start a organization in Arina's name, to help fund adoptions for families that desperately want to adopt, but don't have the outrageous amount of money needed.
We want to start an organization in Jax name, to help families that have a medially fragile child, and are unable to get supplies or equipment needed for them. Do you know it costs 1200 dollars a month to rent Jax vent alone?? And that's a single piece of equipment out of many he uses on a daily basis to live.
Ray desperately wants to build a Give Kids the World for the west coast. It was one of the most amazing parts of our Make a Wish trip, and Disneyland does not have one, only Florida. How great would it be if we could make that happen?
And really, how great if I could have an account for Jax, so that if something is not covered, instead of a complete panic attack, I could just go to the bank and pay it myself?

I have someone extremely close to me, that is struggling big time right now. I wish more than anything that I could have left my house in Utah, and said, move in, its yours for your family, free and clear. A roof over your heads, and some cash in an account, so you never have to worry about food or diapers. The most I can do right now is help with Christmas, so children don't go without anything this year.

Money is not everything, I don't need a big house, and expensive cars. But money does mean a lot with a medically fragile child, unfortunately. Not for the fun stuff, for the survival stuff.
I still don't have Jax tobi, his antibiotic for his trach bugs written a week ago. I asked the pharmacy if I could just pay for a couple days until its pre authorized. He said yes, but its a 6,000 dollar drug. You do the math!
Instead I googled Tobramycin, and got to their website, where they offer their medicine for a 10 dollar co pay. You better believe I'm calling them tomorrow to sign up!
I've done nothing the last few days but argue with Apria. People here in Cali said don't use them, but I needed someone fast. Big mistake! I still don't have Jax supplies, and I'm officially out of trach noses and suction catheters for Jax. My next option, have my child admitted to the hospital because I don't have the supplies to care for him at home. Ridiculous that I should have to go there.
Tomorrow, after I finish screaming at Apria again, and before my search for a new company, I'm going to call a company I've used here for vacations. I don't remember the name, but I have the phone number, and I bet she would loan me some oxygen tanks, and sell me some trach noses. So hopefully I don't have to admit my child to the hospital simply for supplies!

I have already won my own lottery with my beautiful family!

But in my dreams I still can't help thinking how much more I could. Many more orphans would be away from institutions and in a loving family's home.
I have a friend I met back in March, when we came here to drop daddy off. Sweet Megan is single, and adopting beautiful Sophia. She is STILL trying to raise the funds to bring her home. This women has worked tirelessly, and she is not giving up! I think I would have a long time ago! But she knows this is her baby, and it breaks my heart that she is still trying. I want to have a fundraiser for her, but I can't do much until I'm settled in a home of my own, instead of living out of a suitcase. So all I can do for now is make a donation and ask for your help.
Now I know everyone is asking for help with adoptions, I understand that. She has been trying longer than I've ever seen anyone without traveling. I've seen the accounts of other children go to 10,000 in a single day. Consider helping this mommy and daughter find each other, click on her name and make a donation to her account!
What great stuff would you do if you had the money?

Busted!

2011-11-05T22:08:00.007-06:00

Busted my dear princess!

So its not a raccoon scurrying around the backyard after all!!

2011-11-03T10:47:00.004-06:00

Thank you my friends for your encouragement! I always know that when I need it, you are there!

Yesterday was rough. Really rough!
The biggest issue was getting Jax lovenox, his bloodthinner filled. Sometimes meds for kids are only available through childrens hospital pharmacies because kids have such different doses. I did find out that I was able to get it through the childrens hospital in the vial that I draw up. Then I find out that the vial is not generic, so it would cost me 125 dollars a month for this med! Generic only comes in pre filled syringes, all way over his dose. As of right now my insurance will pay for the pre filled syringes, us dumping 90% of the med out. What a waste, right? I'm still hoping for a better way, because these syringes are bigger needles.But right now I just need the med filled! Its hard enough to poke my child every day, but to use a bigger needle and make him hurt more just kills me!
Then when I tried to fill his Tobi, to kill these bugs in his trach, I'm told it has to be pre authorized. So I have to wait at least 3 days to give my kid an antibiotic! Again, how smart are these people?
I also finally got my insurance info yesterday, which was good news, because I'm in desperate need of supplies. I knew this insurance had bigger deductibles and out of pockets, and I was prepared for that. But the home care company wants my credit card, and they are going to deduct the 20% every month, which will be about 400 dollars! I don't feel comfortable having them do that as if it was my phone bill or something. Doctors appointments, and countless other things will contribute to his out of pocket, so I'm not going to keep paying the home care company and end up overpaying. If they don't agree, I may be switching home care companies already!
It was just a lot to get in one day. I was on the phone so much that my phone died by 3:00. I was feeling like I was going to be paying hundreds of dollars a month for Jax, and I was ready to crawl back to Utah with my tail between my legs!
Thank you to the fantastic pharmacist at Walgreens. That women got to walk a day in my shoes, and we have both been crazy the last two days trying to figure these meds out. She is picking up his robinol for me this morning from another walgreens that compounds. So I don't have to drive out there and get it.
The pediatrician that we've had the last two weeks has also had a crash course in Jax. She's talked to me more in the last two weeks than probably any of her other kids combined! She has basically told me that she can't handle Jax needs, which is ok because I was already looking for another ped. I meet with one tomorrow and I'm really praying she will work, because right now I feel like I'm his only doctor, and that freaks me out a bit. When I sit down with her I'm going to tell her straight out that I need someone who is ready to dive in head first. That we'll be talking a lot, and just to be prepared for the care Jax requires.

I was sitting with Jax in my lap last night. My 25 lb nearly 6 year old still fits snug right in my lap because he is so tiny.
I was amazed that such a little person can be so complicated, and so expensive. How can someone so tiny require so much technology and equipment. Its amazing, isn't it?
But this same little person is so amazing, and so life changing!
And so is his little sister, actually!

I think the boogy in this picture just adds that extra something, don't ya think?

A mothers prayer

2011-11-02T16:49:00.002-06:00

Dear God,

Please help me feel peace. I know I'm yet again being tested, and I'm trying to stay strong. But so many tests, so much of the time, and my body is tiring. I know this is a test to see if this was the right move or not, so I'm trying to wait until things calm down and get settled. But right now I'm facing hundreds of dollars a month out of pocket for things my son needs to survive. The expenses just keep coming. I can't find a place to get a lifesaving medication without paying 125 dollars a month for the non generic brand, because generic only comes in pre filled syringes.
Please just help me through this, I'm on the verge of a meltdown. Please.

Amen

Halloween/birthdays!

2011-11-01T09:39:00.006-06:00

Before I get to Halloween pictures, I have to say Happy Happy birthday to my little All American boy, Carter!!

He came in to this world so fast, barely waiting for the holiday to be over, and barely waiting for mommy and daddy to even get to the hospital! And the kid hasn't stopped since!
He absolutely loves being a big brother to Arina. Although he is Jax super big brother, he has never been able to do much big brother stuff with Jax like he can with Arina, and she adores him!
Happy Birthday buddy, we love you!

Ok, Halloween.
Halloween didn't start out so well. Sparing you the same ole boring stuff. Basically the time it takes to get new insurance set up is just not fast enough for medially fragile kids. Some of my supplies I'm down to one left! Not a place you ever want to be in with life saving equipment! Today, its coming out, whether we have a policy number or not, I just can't wait any longer.
We finally got Jax cultures back. He is growing two nasty bugs in his trach. We are adding inhaled tobi because the cipro doesn't seem to be killing them both. And surprisingly, his gj tube showed staff. Freaks me out a bit because staff can be nasty if it gets into the bloodstream!

But last night, when we went out trick or treating, I realized that this was the first time Jax has ever gone out with the kids. In Utah, its always been too cold to risk taking him out. Not in Southern California! It reminded me of one of the reasons we moved. Sea level, and getting Jax out of the bitter cold winters that he never handled well. Soon we'll be laughing about how hard it was to get Jax moved, and it will all be a distant memory.

Anyway, without further ado, I bring you Peter Pan and Tinker bell! Trying to get a picture of the two both looking at the camera is nearly impossible!

Tickle tickle Peter!

Princess Tink. (Notice the hazards of being a new walker on her face!!)

Don't ask me why Tanner has a fireman's hat on with his Star Wars costume. He won't wear the mask because of sensory problems!

blankies baby!!

2011-10-30T13:07:00.004-06:00

She this beautiful redhead? She has a disease that will significantly shorten her life. Her little body can't really do anything, but smile like she does so beautifully. She just received her blankie, from our blankie project.

Every once and a while I repost our blankie project here, so new readers can learn about it. We make blankies for children with life threatening illnesses. Click on any of the blue blankies to go read about these brave children. There is an order form there, if you know of a child that would benefit. We just sent out our 200th blankie! A major feat, I think!
Here are a few other hero's that got a blankie.

This is our original blankie video, when I have time, I'd like to update it, but it will pull at your heartstrings, promise!

Make a video - it's fun, easy and free!
www.onetruemedia.com

More from a princess

2011-10-27T09:52:00.007-06:00

My beautiful princess is the most amazing little person! When we first talked about adopting another special needs, I had to do some real thinking. I've always wanted a little girl. I was a dancer. Drill team and dance pretty much ruled my life all through high school. I wanted a little girl that would enjoy dance like me.
Would a little girl with Down syndrome be able to dance?
Would a little girl with Down syndrome go shopping with me, and be my best friend?
It was in this wonderful world of blog friends that I realized that indeed a girl with Down syndrome would be able to do anything any other little girl could do.
Arina learns so much every day, and I can't say that some type of early intervention or therapy has helped her. She did get early intervention in Utah. But that was two days a month for an hour. Basically she came, asked me what Arina was doing now, and did her testing. Thats it!
We will get her into whatever she gets here in California, and of course preschool when she's 3. But everything she learned, she learned from us and her own determination. She is going to be a true walker in just a few short days. Now that she knows how to stand alone, she is walking all over the place!
She's got a few new tricks that I showed her once and she's mastered. The girl gives knuckles like a real gansta!
And this one is a video I need to get and post, because I'm telling you, it will make you cry!

She tickles Jaxson.

I tell her, tickle tickle tickle, and those little fingers are a going on Jax's belly. The love she has for her big brother is unlike any I've ever seen!

Here she is sporting her cute halloween pretties from her bestest auntie Steph!

Oh, look, there is a princess in there!

The only problem is the skirt is way to tempting.
I mean, those pumpkins look scrumptious!

Yep, just like I feared. Way too much fun to play with, not to wear!

The princess walks!

2011-10-25T19:23:00.003-06:00

Jax has been all consuming the last few days. The times that he sleeps I use to get done whatever I can! He is so junky, that it's non stop suctioning except for the short times that he sleeps. If I didn't have robinol for the junk, and trazadone to help him sleep, I'd be nuts!

We saw his new ped yesterday who did a trach aspirate and swabbed his nasty g-tube site. She was very nice, and she seemed like someone I could talk easily too. The one thing I didn't like, that I'll have to talk to her about, is she brushed off my concerns onto other doctors. I feel like my ped should know everything about Jax, so if another doctor has questions, there is one person that can answer everything about him. So the fact that she didn't really want to hear my concerns, and told me she could give me specialists names to call, didn't sit well with me. I was thinking she could write an order for a GJ button so we could get rid of this stupid tube. But she just told me she could give me GI doctors names. Grrr. I left feeling overwhelmed that I had tons of new doctors to find by myself.

Other bad news, Ray's credit is still too low for a home loan. We need to pull his reports and see what is and isn't showing on there. I need to decide if I want to give in and rent for a few months, which would be super expensive. But I'm tired of only have a couple weeks of clothes, and living out of my suitcase. I want my own place!

So for some good to this post, if you haven't already skipped the other crap! Look at what our princess is doing now!

Don't you love the bare belly and bedhead? Looking good baby!
You can't tell at all that this girl loves to show off, making sure everyone claps for her after her accomplishments!
Any day now, she'll be walking! Which is good and bad news for this momma!

This is what its all about!

2011-10-22T11:03:00.006-06:00

Today I was going to do my big reveal with a great picture of the kids in their costumes because we had a Halloween party at Disneyland last night.
But I spent the whole afternoon at the doctors office, 4 hours to be exact. The only thing done there, besides going over his life story, which takes some time, was a chest x-ray.
He's had fevers, gagging and retching, and tons of junk the last couple days. We still have no idea where the fever is coming from. He doesn't usually get a fever with a respiratory virus. Ears are fine, throat is fine. G-tube site is red, and I've also suctioned some red tinged junk from his trach, so maybe an infection in one of those places? They didn't do a VRP because it wouldn't be back this weekend, so we watch and see if it turns into more. They have the dreaded paraflu and adeno virus going around here right now. Praying its not one of those, because both have made him super sick in the past.
A lot going on with the little man right now. Kind of makes my head spin. His new ped's head will definitely be spinning soon too! Right before we left our Utah ped said she thinks his pituitary gland is not working. A few clues that made her come to that conclusion. She found a lab from a couple years ago that showed his growth hormone level was super low. She pieced it together with some other things. His chronically super low calcium levels. Times where he seemed septic, and everyone panicked, and then he was fine. She said those were probably times he needed emergency cortisol.
His legs, especially his right, are crooked. It almost looks like he knock-knee'd. His legs come together at the knee, and then go out to the sides. Its from never bearing weight on his legs. I'm not sure if its something that needs to be fixed with him or not, since he'll never bear weight. His hips pop every time I move him, another thing with no weight bearing. Hoping those don't need to be fixed. He spine is starting to poke out. Scoliosis, yet another side effect of not being upright, ever! Lots of ortho problems.
If we ever hope to feed him into his belly again, he needs yet another surgery to fix his nissen. This would be his 3rd nissen in 5 years.

Needless to say, I was a little overwhelmed yesterday. I didn't get to do Arina's hair all cute, because we were late to the party, after spending so much time at the doctor. I knew that even with robinol, Jax was going to be a junky mess at Disneyland, and we would spend the majority of our time suctioning him, and the suction would have to come with us on the rides.
Sometimes I wonder if our lives will ever be normal.
No, they never will, and that's ok, because moments like this is what life is all about. Its why we keep doing as much as we can while we can. Its why we drag tons of equipment all over the place. Its why we work so hard to keep our little man alive. Because he is the light of our lives! And he deserves to live his life, seeing as much as possible. Why, even though he is so fragile, he is not locked up in the house 24/7.

A smile from a little boy that rarely does. A sweet Peter Pan that comes right into his face, where he can see him, and talks to him. Ignores the crowd behind us, and takes the time to brighten a little boys night!

So there you have it. Peter Pan and Tinkerbell are the costumes. You were right! We were going to do Mickey and Minnie, since I already have Jax costume, but its packed in storage right now!
I personally think Jax is a much cuter Peter!!

Emily's birthday party

2011-10-19T22:03:00.005-06:00

We are entering our 4th week out of our house and being in hotels and family's homes. Its really starting to wear on me. Mostly its Jax. Having his supplies scattered everywhere, and no place to do his cares without breaking my back.
Friday we meet with a financial guy about a home loan. I'm just worried that our credit still isn't high enough. Its amazing how fast your credit is hit, but how slow they are to rebuild it. Our big financial breakdown was in Jax first year, thats almost 6 years ago. A month ago Ray's credit was barely too low. We are hoping that with now no bills, and open credit cards, that our debt to credit will change and his score will automatically go up. I'm telling you, opening credit cards was the biggest thing that raised his score. We never had cards before, and these are low limits, but its credit on your score, and it helps big time! Its a shame they look at a single score, instead of the fact that we have zero bills now, and a huge chunk of money to put down on a house. Fingers crossed we can get our loan, I'm ready to start looking for houses NOW!

Last Thursday we went to our sweet Emily's birthday party. I'm so excited that now we live so close to them that we can get together often. They are good friends of ours!
Look at all these gorgeous kido's

This is sweet Gracie, she loved Jax. She kept checking him out!

Emily and her great big brother

We actually found something she won't eat...broccoli!

Arina and Ella basking in the sun

The gorgeous cake

A DS friend needs your help. Her son is getting glasses, and she needs advice on what kind to get him. Please click on this link and help her if you have experience in this area!
http://strangelyblogging.blogspot.com/2011/10/cuteness-and-family-home-evening.html

Oh, and we go to a Halloween party at Disneyland on Friday. I'm going to reveal Jax and Arina's costumes Saturday morning in the pictures. So if you haven't voted, do it now!

Finally!

2011-10-17T22:00:00.005-06:00

Sorry, I know I promised pictures last night, but instead I got a gagging, retching little boy with a crazy high heart rate.
He's doing better tonight, but his g tube is venting, and he has zofran on board. Not quite sure what he's up to, giving California a big Jaxson welcome I guess! Or just trying to make this momma crazy because she still has Utah insurance!
But here's some pics of the last week or so. I know this is what you want, its amazing how your blog traffic dies when no pics are posted for a while!

This is what little miss does for the camera now. Its her new "cheese" face!

Chillin on the floor together

Tanner is so funny. My autistic son won't go on very many rides at Disney. But he was so enthralled with the new Star Tours, that he loves it now!!

When your this limber, you can sleep anywhere!

My favorite little munchkin and me

Watching brothers down below!

Me and my princess!

More cheesers

Pictures tonight

2011-10-16T11:06:00.001-06:00

Tonight I'm going to get on my laptop and get some pictures loaded. Lots to post.
Yesterday we went to sweet Emily's birthday party. Met lots of new friends.
Today we are going to hit Disney, hopefully its not to crazy because the CHOC walk was this morning.
i'm finding out about more programs here that Jax will qualify for, and his sats have been the best they've been in a long time! This move really was the best thing for him.
If you have a child with bad lung disease and/or pulmonary hypertension, and you live in high altitudes like Utah, I highly recommend moving to sea level. In just a week I already see a difference!
Pictures tonight, promise!

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2011-10-12T23:28:00.001-06:00

A bunch of people asked if we were ok. We are. We dont have internet besides my phone. This hotel doesnt have free WIFI, and I dont feel like paying 11 a day for it!

Jax was discharged late Monday after he fully woke up from the sedation he didnt need. Today after schoolwork we decided to meet daddy at Disneyland. I dont have Jax special needs stroller because there was limited space in the car, and so we chose to take his regular stroller because I use that on a day to day basis. I guess one of these days I need to just give up and use the wheelchair. Disney is such a hastle without it. They never think he's handicap, even after seeing the tubes. Its draining explaining my handicap son every 30 seconds. His SN stroller is so bulky and heavy, its just a pain. People think you abuse the handicap system. Trust me, its not all front of the line stuff. There are rides, like Haunted Mansion, that we wait FOREVER to get on!
My son would much rather have his health than a handicap pass, and so would we!

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Finally...progress

2011-10-10T18:57:00.001-06:00

I promise one of these days i'll have cute pics to post. Right now I am just having a medically fragile mommy moment.
As hard as this has been, its also been a great learning experience. At 4 when the GJ still hadnt been placed, my Utah ped called the PICU resident. We got some insightful info that will help us in the future. CHOC doesnt have their own IR guy, they share with the adult hospital next door. I'll talk to my new ped here before making a decision (she is VERY good with fragile children) but more than likely CHOC will not be our primary hospital. This is all stuff we have to consider with Jax. That is why moving is a billion times more stressful with him. Dont get me wrong, CHOC has been fabulous! Super nice nurses, huge rooms, and I know if he was sick, they are more than capable of caring for him. Its just the small things we have to consider with him. Things like spending nearly two days in PICU to get a 5 minute procedure done. With so many different medical problems, we need what works best for us.
They made me leave when they did it, which I didnt like. But when I came back I see that they put in a huge GJ tube, not a button. This little, seemingly stupid thing has sent me to tears. Its a billion little things all meshed together that is my routine with my complicated child. Change something, and its like changing something on my autistic son. I wish there was a way I could truly let you see what I mean, but you'd have to walk a day in my shoes. I just know he is going to have this tube pulled out in days. Its big and bulky and sticks way out of his belly. I cant wrap a diaper around the g tube because the two ports are right next to each other. Just things to further complicate a complicated child.
With a dear friend in similar shoes, we talk about how scared we are. How we think about the future and what ifs. What happens when I cant lift him in and out of the tub anymore? Scary things for me to think about.

Tomorrow is a new day. The tears will be done, and we'll be ready to tackle the world again. I have a few more hours to pull myself together!

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Spending the night.

2011-10-10T00:31:00.001-06:00

Spending our first night in California in CHOC's PICU.
The ER wasnt the greatest, but I dont think there is such a thing with ER's. Its a dual ER with an adult hospital next door. They never got a history on him, which wasnt a biggy at first because we thought we'd get our tube and be on our merry way. Then we were told we had to stay the night because he couldnt get into IR for a new tube until tomorrow. The nurse came in to say she'd given report to the floor nurse, and I remember thinking, what report? You never got one from me! When we got to our room I mentioned the vent, and the charge nurse was like, ugh, we dont do vents on this floor. They were super nice and worked quick to get us moved. Their PICU rooms are ginormous! I can so handle these rooms, with a big parent bed and each room is seperate, no curtains in this PICU! Hopefully we can get the tube in bright and early. They are saying here they usually do sedation. But I will fight that simply because its unnecessary medication when its a 10 minute procedure he's had a billion times.

I guess we'd see the hospital sooner or later. Just didnt think it would be quite so soon!

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First ER glance, way too soon!

2011-10-09T17:16:00.001-06:00

30 seconds after arriving in California, I pulled Jax GJ tube out when getting him out of the car. The balloon was deflated, so it may have been bad, but now our first stop even before a shower is our new ER. Not really the first stop I wanted to make!

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Done and home

2011-10-07T15:21:00.003-06:00

We are done and we are home, I mean, hotel! No really,we are. I think this is a record post op for him. I went back to see him and he was wide awake. We were on our way a half hour later. His teeth actually look pretty good. One thing for kids that don't eat by mouth, they don't get the sugar, and don't get the cavities. He didn't have a single one. He did have tarter, but it was actually acting as a barrier to the teeth he was grinding. His gums are way down on his teeth, but he isn't going to mess with that unless he starts getting infections in his gums. All of his adult teeth are indeed behind his baby teeth, but because he's never eaten by mouth, those baby teeth are taking their time coming. His canine teeth on top are still not in. Because of this he probably won't lose baby teeth until later either. So we don't have to worry about loose teeth just yet.

When I saw the anesthesiologist after I said, "see, I told you he'd be fine. He's much scarier on paper than he is in person!"

Now we pack up because tomorrow, we are on our way to California!

Getting started

2011-10-07T12:10:00.001-06:00

They took Jax back about 20 minutes ago. I'm not even kidding they almost cancelled it again! First it was the aspiration pneumonia he had a month ago. Then it was he should have missed two lovenox doses. I was shaking I was so mad. I told the nurse practitioner that if this was cancelled again it would not be pretty! Get your act together please. The anesthesiologist asked if he was healthy. I told her he would never be as healthy as they wanted him to be.
The hilarious thing is the anesthesiologist was like, does he really have Down syndrome? She didnt think he looked DS, and she couldnt figure out why he had the multitude of medical problems he did with just DS. This was the first time anyone has told me he didnt look Down syndrome! You get something new everyday I guess!

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Lets try this again

2011-10-06T21:03:00.003-06:00

Tomorrow we try Jax dental work again.
Once again he goes under anesthesia for a simple procedure. Tis the life of a medically fragile child. General anesthesia is not good for them, but its the only safe way to get things done sometimes.
The hospital staff never fails to remind me of how scary Jax is. It honestly surprises me that a childrens hospital acts so nervous with him. After all, its what they do. I always thought the trach was to make life easier for an anesthesiologist, but it doesn't seem to be the case with Jax. It got cancelled in July because the anesthesiologist went over his files with a fine tooth comb, looking, it seemed, for a reason not to have to do Jax. And he found one. So pray tomorrow it gets done, and no more excuses are found to not have to work on my warrior boy!

In a life so full of pain, he always comes out smiling. So many pokes, so many uncomfortable things, and yet he still loves his caretakers.
This boy is so strong, and tomorrow will be no different!

I'm the same!

2011-10-04T18:20:00.010-06:00

I have feelings, just like you

I like to swim, just like you

I have pretty blue eyes, just like you

I deserve a chance at life, just like you

I deserve a family, just like you

Don't hate me, because I'm beautiful.....just like you!!!!

Don't forget to vote for which Halloween costume you think they are going to wear!

Snuggling

2011-10-03T09:03:00.003-06:00

Our hotel room has a king bed, and then on the other side of a wall, a couch bed. I'm not normally fond of king beds, they are so big, I feel like I'm a mile away from my hubby. But in this case its been nice. Two boys sleep on the couch bed, one boy sleeps with me, and Jax sleeps on the other side of me. Arina sleeps in a porta crib.
I love sleeping next to my boy. He's never really been able to come into our bed and snuggle, he's always had too many tubes and monitors. Nights that he cries or is cranky, I pull a chair up to his bed and hold him there until he calms down.
Bonding can be so hard with a baby like that. When he spent most of his first year intubated and sedated, I felt so helpless. I would walk through the store and not complain that my baby was not normal like these babies...but complain that its not fair that they got to dress their babies, and take them to the store, while my baby layed in a crib in the hospital. Because of Jax medical problems, my insurance gave me a fancy breast pump. I never really was able to breastfeed my babies for long. My milk always seemed to run out after a few months. Carter was the longest so far, I was able to nurse him for 5 months with the help of a pill to increase my milk. With this super fancy breast pump, I was able to pump milk for Jax for 8 months. I only gave up at 8 months because bottles and bottles sat in the fridge at home and at the hospital. He had to switch to IV nutrition because of fluid in his lungs. That and the fact that there was no way after this long stay, that he would drink by mouth again. So I stopped pumping, and handed the pump back over to my insurance company.
Being able to snuggle for the last week with Jax has been amazing. A few small glitches, like even with the trach and vent, he is a super restless sleeper. So all night I'm super careful about moving too much, because it will wake him and make him stir. The other night he fell asleep with his hand on mine. I can't help but think that he felt comfort having his mommy right by his side. He can feel my heartbeat, and my skin, and he is loving that! And of course, so is this mommy!

I ordered Jax and Arina's Halloween costumes. I'm super excited, and I've put a poll on the sidebar. Lets see if you can guess what they are going to be!

Happy October and Down syndrome awarness month!

2011-10-01T19:52:00.009-06:00

October is Down syndrome awareness month. I can guarantee that with all the craziness in my life right now, that I will not be making the 31 posts. But here's a first try!

I was always around Down syndrome. My neighbor's niece had DS, and I was frequently around her. She was always fun, and I never saw her as anything different. Perhaps this is why I didn't go through the typical emotions when Jax was born. Or perhaps it was that I worked at the childrens hospital. DS kids were regulars for me. His medical problems didn't bother me. I knew in depth what his heart defect was and how it was fixed.
Jax started out very typical, and has slowly, over 6 years, grown more and more atypical.

This blurry cell phone pic is the only good pic I have of Jax beautiful smile before his brain injury locked it away. I treasure this picture as if I paid 100 dollars to have it taken. I can see his little personality, and the little person he was, before it was all taken away from him!

Jaxson has Translocation Trisomy 21. It only happens in 3 to 4 percent of all Down syndrome. The funny thing about translocation is he has the same amount of chromosomes on paper as you or me, because his extra 21st is attached to his 13th chromosome. It is the only type that can be inherited, although his is not. Mosiac is the least common, only 2 percent of Down syndrome people. It is thought to be a mild form, because not every cell is affected. Nondisjunction is the most common form of Down syndrome, 94 percent of all Down syndrome people. My geneticist didn't know if Translocation had more medical problems, it hasn't really been proven, Jaxson is just one of those unlucky few. He has Digeorge anomalies, although he doesn't have Digeorge syndrome. That just means that he has a few common things found in Digeorge syndrome, like hypocalciumia.
I always had a hard time being a huge advocate for Down syndrome. Partly because I am consumed by Jaxson's health (like spending 5 Buddy walks in the hospital) and partly because I have a hard time being all happy and trying to tell people how great DS kids are and then show them Jax. Not that he is not great, but he is very scary, and I hate to scare people to death by telling his story.
Jaxson is not a common DS child. A lot of DS kids will struggle for the first couple of years, with heart defects and such. But its not common at all to have kids be this fragile for this long. My geneticist also told me he had never, in 25 years, seen a DS child with this many medical problems, live this long. A hard pill to swallow, but a testament to my warriors strength and courage.
Having Arina has shown me a whole new side to Down syndrome. She is a DS advocate without even knowing it. Her flirtatious smile sucks in even the hardest of hearts. Walking through a store with her is not without many stops to talk and play with complete strangers. I can't wait to see what she will do. Drill Team, homecoming queen, nothing is out of reach for our princess.

Today we enjoyed the 80 degree October weather, and escaped the hotel to the park. Jax stayed awake this time, and had a grand time swinging, and going down the slide with his brothers.

Look at that tongue and windblown hair!

Love

2011-09-30T11:34:00.001-06:00

This girl has to be wherever her brothers are!

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Alive and well

2011-09-27T13:09:00.001-06:00

We are here, we are cozy in our hotel room. Even though we've been in hotel rooms many times, this seems different. I cant let Arina cry in her crib, because she'll bother the neighbors. So she's learning that if she cries mommy will get her out. Not something I want her learning. Thats going to be a bad habit to break and its super frustrating.
Jax had a rough night. He woke up a few times wretching, until I finally took his vent off. Then he slept until 9. He seems ok now, just a little more pale than normal. Not sure whats he's up to. Hopefully not more feeding problems.

I'm so proud of my boys. They worked their little buns of last weekend. They were such a big help. Even Tanner, who sometimes struggles, did so good.
I love my family, and even though its chaos right now, we are together, and thats all that matters!

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Bye bye house

2011-09-23T20:31:00.003-06:00

This is my last post from this house. In about 10 minutes the computer is being unplugged and packed away.

I calmed down a bit last night, daddy is home, and things are moving. This morning I thought for sure we'd be able to be out tonight.

Bwahahahah, I don't know what I was thinking. With just me daddy, and the boys, things move very slowly. My nephew is coming over in the morning, and so we should be done by late morning. The buyers said it was ok that we are out tomorrow afternoon, but their realtor told me over and over how much they wanted to hurry in. So I hate to say that they may be moving into a not so spotless house. With only a couple days warning, it doesn't leave me much time!

We have a new plan that has my nerves calmed. Daddy can't miss any work this week, it is quarter end and month end, so he is just crazed! So we are moving everything into a storage unit here. The truck we are using today is free courtesy of the hubbys work! He will fly home Sunday to work this week. At the end of two weeks when he has Friday off again, he will fly here, and we will all drive down. This is great because I don't have to worry about insurance stuff right this second. One thing at a time for this frazzled momma please!

So I'll be here for another two weeks, in a hotel. I'm ok with that. Free cleaning, no utilities, and an indoor pool for the boys works for me!

Jax dental work almost got cancelled again. I can't believe how much people freak out with him. Even people at the childrens hospital are reluctant to work on him. I would think its easier with the trach, because he already has an airway. If they can't get him off the vent, you just leave it on. There is no intubating and extubating him. But they accidently scheduled him for the outpatient childrens hospital clinic. Even though its pediatric docs, they won't do him there because there is no PICU if he needs it. The main hospital had one opening next Friday, so we just need to make sure the dentist can do it that day. Keep your fingers crossed, he needs this done before we leave.

I'll have my laptop, but in case I can't get pictures downloaded, I am putting up some that I was going through last night. I'm putting together a picture album for my ped, and here are some good ones I found!

Carter, Mondo, Tanner

Look at my sweet little Tanner!

Jax first Christmas!

2011-09-21T19:50:00.003-06:00

I'm taking a minute to sit and blog, to take my frustrations out on the keyboard, and because I haven't eaten all day and am starting to feel a bit shaky. So 5 minutes is needed.

Today I was told that I have to be out of my house Friday! Yes, a day and a half I have to be out. My realtor has been soooo terrible. I've been asking him for weeks what day to I have to be out. He never tells me, he tells me they hope to close this date or that. I thought I had 3 days to move out after closing. A lot of people are telling me there should have been a 72 hour clause in the paperwork. I blame myself a bit for not making sure that was done, but that's why we (severely over-)pay a realtor! I would have sold the house myself if I knew I was going to be doing all the work anyway. All he's done is take pictures, that's it. I have not seen him in person since those pictures were taken. We are reporting him to whoever it is we report realtors too. And if I could, I would take his commission away!

I called the buyers realtor myself and asked if we could be out Saturday. He said it was ok, but made sure to remind me over and over that they want to hurry and get in, and to call him as soon as we are out.

Add to that my hubby's clutch died in his car yesterday. We have a warranty, and they told us it was covered, and sent him away in a rental car. Then they call him and tell him this specific part is not covered, of course! So today, in my utter madness of the moving fiasco, have to find 800.00 to pay his car so he can get to and from work, since its an hour and a half away, and to the airport to get here.

I've calmed down just a bit, after deciding I'm not dealing with the insurance part of things quite yet. Now that I know that I have 30 days after the address is changed to get the new insurance, I'm not going to try and do that right now. We will stay in Utah for the week in a hotel, Jax has dental work at the hospital Tuesday, and it has to be done now. His front teeth are almost grinded down to the nerve, and that would make it an emergency.

I cried my eyes out to my pediatrician over the phone, after she told me that Jax has been the most rewarding patient she's ever had. That she loves me and admires me so much, and that she is going to continue to be our friends. Then she told me that she wants to donate something in Jax name. Equipment, or whatever we feel strongly about. I am trying to think of something that will make a difference. The PICU and her office is where he's spent the majority of the last 6 years, so I want to do something at one of those places. The lab did tell me they desperately need a light that finds veins. That might be a good one, since Jax has always been one of their most terrible pokes, it would be only fitting that something like that had his name on it!!

I had to take him in for labs and a weight today too, and I thought for sure I'd bawl the whole time I was there, but I just didn't have the time. I know I'll be in that office again before we leave, but I've been super teary today. What am I going to do without her? I love her so much. I can't even begin to tell you how much we've been through together. The late night conversations, holding hands at Jax bedside, and her being my psychologist many times. I love you Lisa, with all my heart!

Prayers is all I need for the next few days. Internet will probably be scarce, only on my phone, and if I can figure out why the Ipad is not picking up WIFI when it should.

Thank you my friends!

Playing in the sunshine

2011-09-19T18:05:00.005-06:00

Jaxson is doing very well since his hospital stay. Our biggest thing is that he lost nearly 3 lbs during the whole ordeal. 3 lbs wouldn't be anything for you or me, but on a 25 lb almost 6 year old, its way too much. I about died when I saw the numbers on the scale, and my ped nearly died when she saw his little body. Because of his SVC syndrome making his face and neck puffy, its hard to see in pictures just how scrawny he is right now. He is tolerating the continuous peptiman jr in his J tube. We won't switch to G tube until we find out about fixing his nissen. The next aspiration episode may not be as easy for him to handle as this one was. Occasionally he will get cranky if his g-tube is clamped for too long, so I'll unclamp it and wrap a newborn diaper around the end to drain.

Its still really nice here, after a few days of rain, so I decided we needed a trip to the park. I was all excited to get Jax on their handicap swings. I had already decided that tubes can be taken off for a few minutes to get some sunshine and fun. I had plans to have Mondo take him down the slide, something he's never done before.

We waited patiently for the handicap swing to become available. People ignoring the handicap sign, and the obvious handicap child waiting.

I put him in and started pushing, and the little stinker does this.........

He was out cold! Without much swinging, and no trips down the slide! My plans were a bust!

Of course Arina had a grand ole time. This girl loves the swings!

Trying her hardest to get back up that slide, to no avail!

The buyers may close on the house on Thursday, which means we may close Friday or Monday. I'm getting that pit in my stomach. I'm not sure if its adventure, or fear. I've never in my life lived outside the Salt Lake valley. Its an adventure to me, but adventure has a different meaning with a child like Jax. My homecare company here wants me to find a nationwide homecare company that my new insurance covers, so I can leave their equipment here, and get equipment from the new company to take with us. The only company I can see that is nationwide is Apria, and I've had multiple people tell me not to use them. I'm not sure what to do. Not many companies I called do oxygen. CCS medical, and Edgepark, neither do oxygen. I don't want to get stuck with a company that is going to be hard to work with. I fight enough for the stuff Jax needs, I don't need any more.

My only reservation about moving was leaving my ped. And while its the only thing, its definitely one of the biggest! No one knows Jax like her, and it will take a while for anyone to learn him and how he ticks. And as much as I hate the hospital here, there are people that know Jax well. When we move, every hospital we go to will be brand new. No one will know Jax. No one will come in and say, "hey, there's my Jaxson". Oh man its a scary thing! Reassurance from people that have made a huge move with a medically fragile child is greatly appreciated!

I'm a nervous nelly right now!

Current princess stats!

2011-09-17T16:08:00.004-06:00

First things first! I finally have a new post up on the blankie blog! Maybe I'm finally getting back in business over there! Yippee! The blankie blog is somewhat of a mess right now. The person that did my blog has disappeared, along with my background, and I am NOT a blog maker. So if someone wants to volunteer, we'd be super grateful!

Also, while Jax was in the hospital, I ran into an old co worker, who informed me she had a Down syndrome baby boy! I was super excited for her, but she is feeling like she doesn't know how to take care of him, or any resources. I helped her, but I also told her to give me her blog, and that I could introduce her to literally hundreds of families, all over the country! My blog is where I've met so many friends, even friends that live right near me were met online first. So please click here to go to her blog and make her feel welcome into this fantastic friendship! Her name is Ashley and her little guy is Brunton!

The princess had her two year check up on Friday. She weighs in at 20 lbs, and is right smack in the middle of the growth chart. Developmentally she is doing fantastic. The only thing my ped said is she might benefit from some speech therapy since she doesn't have any words yet. She has many signs. Please, thank you, daddy, mommy, baby, eat, more, play, all done, and milk.

She is still working on walking, but she will stand up against the couch and just take off all by herself. That girl is motivated!

She needs her vision checked, and hearing re checked, since my ped can't see in her ears at all! We are going to do an overnight oximetry, to see if she needs her sleep study repeated after her tonsils and adenoids came out. But really thats it. Her thyroids are still normal, so we are still med free with our princess. And it seems like her aspirating is getting better, because she only coughs when drinking thin juice.

And of course, she has the whole office wrapped around her little finger. Nobody wanted to be the one to give her 5 shots. Her flu shot, and catching her up on her immunizations. Even though she was immunized in Ukraine, they always redo them because sometimes those countries have old and expired shots.

Basically, she's doing fantastic!

*I have to say that I tried really hard to find a way to crop my fat baby belly out of this picture. But its impossible, and the picture is too cute of her not to post!

Some great things

2011-09-15T15:16:00.005-06:00

Remember this?

Grab this Button!
Its where Jaxson got his Ipad after the whole scandal. Well his post is up on the blog, go read it, there was a surprise in there.

I found out that our dear friends, Joyce and Sarah, were responsible for Jax getting his Ipad, they donated and wanted the money to go to his.

I love Joyce so much, and how do I ever repay her? She made beautiful quilts for Arina and Jax, and now this!

I'm just glad that I had the opportunity to meet them both in person when they were in Utah for a quilt convention.

Thank you, thank you Joyce, I cannot say that enough. We love you so much!

Ipossible is so close to meeting their goal. If you haven't already, please consider making a small donation. Just click on the button above!

One more thing, my blog was nominated today for a best blog award. I'm touched! I know there are much bigger and more popular blogs, but if you have a second go vote for us please!

By Best Special Needs Blog

Home sweet home

2011-09-13T21:55:00.009-06:00

Tonight my baby sleeps in his own bed.

His favorite mobile that has been singing to him since birth lulls him right to sleep.

This boy never ceases to amaze me. Sunday evening they started peptiman jr. A pre-digested formula, in hopes that we could get his gut to accept food. After we got to 15 mls, the wretching, crazy heart rate, started up again. I told the attending that came on Monday, that I wasn't holding my breath that pushing his gut was going to make it work! Yesterday, she promised that if by today, he wasn't any farther, we'd call his GI and get her opinion. They went super slow, only upping every 6 hours. To 20, he did ok. This morning I called, he'd gotten up to 25, and was still ok! I couldn't believe it, we were going to be able to go home! His heartrate is still higher than normal, and the teeth grinding is severe, so he's still uncomfortable, but he's getting food!
His eyes are a bit more perky.

His calcium has been super low, so has his potassium, so his gut is still being weird. He has DiGeorge anomolies, and one of those is hypocalciumia, so he has chronically low calcium. He gets 600 mgs of calcium a day, and that keeps it on the low end of normal. Right now he is on 1000 mgs a day to keep it there. We'll be checking that frequently, to try and prevent what happened last time he was on huge doses. He'd been in the hospital for almost a month with feeding problems. Once home, his calcium jumped way up, putting us back in for 3 days to flush it out of his system. That was one of my first posts on this blog!

Let me out!

Probably our last wagon ride out in this hospital.

As usual, he came home battered and bruised. 9 days of constant tries for access. They got pretty creative this time. See that bruise on his finger? Yep, they got an IV there.

Both feet were good places this time. His ankle is bruised from a failed attempt, and then they got one almost on the bottom of his other foot!

I'm not sure how long he'll be on this formula, they would like to get him back to normal formula. My biggest concern is going back to feeding in his tummy. With this big aspiration, and knowing his nissen is not working well, I'm not willing to do it. I plan on talking to our GI tomorrow, and seeing what she says. My guess is we'll have to bring it up to a new surgeon in California, since we move in about two weeks.

I think after every hospital stay, my love for this boy gets stronger and stronger. I feel like I'm in the presence of a real life angel. How did I get so lucky?
His little, 25lb, 5 year old body endures so much. How in the world does it keep working? Two weeks after a 24 hour stomach bug, he is finally tolerating very slow feeds into his gut, still not into his tummy.
Rarely does this warrior fuss. I don't think he cried at all in the last 9 days. I can't even count the IV pokes and blood draws, or how his tummy must have been screaming when not tolerating feeds. The only way I know he is hurting is the sound of his grinding teeth.
He is a truly amazing little boy!

*So sorry to those that have emailed or commented offering help. I'm really not ignoring you, I just haven't had a second to respond. Although I do admit I have a hard time letting people help me. I guess I just feel like I'm putting people out.

A princess 2nd birthday

2011-09-12T08:21:00.006-06:00

Yesterday our princess turned 2! We took her to the zoo, where she tried to kiss all the animals!

Since we didn't have a big party yet, we just had some family over for cake and presents. She does know what to do with presents, smart girl!

Ohh, I get cake and ice cream?

She wasn't too sure about the candles on the cake. She let her brothers help with that part!

But she definitely didn't need any coaxing in the eating department. We all know she is a pro there. But mommy never lets her eat this kind of stuff by herself.

A far cry from her orphanage birthday last year.

Happy Happy birthday to our Ukrainian princess!!

2011-09-10T21:20:00.002-06:00

Jaxson is still in the hospital, and still not tolerating feeds. Last night they started a tiny bit of formula mixed in with his pedialyte. He seemed to tolerate that ok. They upped it a tiny bit this morning, and that 4 cc's made his heartrate jump, wretching, and grinding his teeth down to nothing! So back down we went.
I talked with my ped yesterday about what she was comfortable going home with. She said he cannot come home if he is not on at least half feeds/half pedialyte. He can't go home on zero calories. The other option was to put a line in and send him home with tpn to give his gut a rest. That sounds like the best plan to me, just because the more we force his gut, the more it is going to resist. No doctor likes that idea though, because his access is so limited. They don't want to use up what he has, they'd rather save it for when he really needs a line. The only access he has is a popliteal, or a line behind his knees, and his right femoral, which I am NOT doing at home! Arms and chest and even neck are all gone. Left femoral is gone from heart caths and a cutdown central line. If he is still there Monday, I'm going to insist on the line. Hopefully we have a good attending next week, not one that will argue with me!

Today has been rough, I won't lie. It was our local Buddy walk, and for a 6th year in a row, Jax could not attend. He has yet to go to a Buddy walk. The only year he wasn't in the hospital for a walk was last year, and that was when we were in Ukraine getting Arina. 5 Buddy walks he's been in the hospital, how sad is that? But its Jaxson's life. It will always be Jaxson's life, and sometimes its so scary. To think that a 24 hour stomach bug has caused his gut to completely shut down, just smacks me in the face with a reminder at just how fragile he really is.

Tomorrow is our princess's first birthday with a family. Her first celebrated birthday, and I'm just glad that we didn't plan a huge party because of the move. Jax being in the hospital would have made that impossible to do.
But it did brighten my day to go birthday shopping for her. I forgot how excited I was to buy girl stuff. But I had to go past the barbies and dress-ups for now, and look at age appropriate stuff. There is plenty of time for the other. I can't wait for her to dive into a birthday cake, and try to blow out candles.
I'm also finding it interesting having her birthday on Sept. 11. In a way I feel like that is a day to remember what happened, and in a way its nice to have something good on that day. I know I'll never forget. That whole day is seared into my brain forever, and I can't even imagine what it was like to be in the city that day.
Prayers and parties tomorrow for sure!

Day 5

2011-09-09T08:44:00.005-06:00

Good and bad news on the Jaxson front. Respiratory-wise he is doing much better. The IV antibiotics are clearing up his aspiration, and he is back to baseline oxygen. Although still breathing harder and his sats are very sensitive when oxygen falls off or he gets mad! But much better than two days ago when we kept him on the vent all day to give his lungs a rest.

The bad news, feeding is going backwards instead of forewards. Yesterday we had to turn off his continuous formula feeds and restart pedialyte. His belly was up 10 cm, and he was super restless. He just kind of layed there all day, and his color is absolutely horrid!

I called my pediatrician last night, and left her a message to call me today. We could be here for weeks waiting to get him on regular feeds again. I need a plan, I need to know what she is comfortable with handling outside the hospital. I need all this done before the weekend comes.
My realtor called the other day and said the buyers are ready to close whenever we are. I panicked just a wee bit! For the last 5 days I have done nothing in regards to moving. Not a thing. I still don't have a pediatrician there. And when I get there with some names, I still need to interview them to see if they will work for us or not.

AAAhhhhhh.
Ok, I feel better now!

Tired!!

2011-09-07T20:41:00.003-06:00

Oh man I am tired. So so tired.

It's a dang good thing this is the only hospitalization, besides an overnighter, since daddy's been in Cali. There's only one of me, and everything to be done. Daddy is not here to go up to the hospital, or be home with the boys. He comes home Friday. Even though I'm super excited that Auntie Boo's hubby got a job in Cali so we can be close, she beat us there. So we don't have her to come sit with Jax when I can't be there.
I had to leave him at 4:30 today, so I could come home and do laundry and dishes, and get some groceries. I took the boys to get a sno cone at the sno shack, since they've been cooped up inside for 3 days. So packing, uh, I guess that will be done the night before we move!

Jax also had a rough day. I got there, and he was on double the oxygen he was on yesterday. The ambubag was out and on his bed, so I asked if something had happened. His RT said that he just desatted pretty low for a bit. She said it was probably a plug. I said he doesn't get plugs, that its his sick lungs trying to work when he's sick. He was wretching and gagging on full J feeds, and his belly was up 5 cm from yesterday. Feeds were turned off, and the doctor called. He just said to hold feeds for 2 hours, and restart and see how he does. He hasn't said much about the oxygen need increase. I called pulmo to have her look at his x ray. She said you can see aspiration, and also pulmonary edema. She thinks that because his cardiovascular system is so weak, that aspirating has really messed it up and he's leaking fluid into his lungs. His heart is also bigger. I told her that he was mottled and sleepy. She thinks his heart may need some help. That would mean going to the PICU for pressors. Going to the PICU wouldn't be such a bad thing. He hasn't been on the floor in over a year, only the PICU, so I forget how hard it is to get doctors to do things. If he was in the PICU and I said he was mottled and yucky, they'd be all over that.
I'm a bit ADD normally. I think that's how I handle so many different things at once. I like to be moving constantly. Lord knows we've had much longer and scarier hospital stays. But I can't believe how depleted I feel tonight. I can't wait to climb in bed and sleep!

Our princess has a birthday on Sunday. We have decided that since everything is utter chaos right now, that we will have a birthday party on her gotcha day, in November.
And because I need some smiles, and I'm so excited I got the princess to sign for the camera, here is a super cute video of her. Its kind of long and shaky, but well worth the watch!!

Hospital update

2011-09-06T14:49:00.003-06:00

I hope everyone is well, I haven't had a chance to check on our friends!

Jax finally got up to a room and settled around 10 last night. I called up this morning, to find he had one of my favorite nurses. The trach/vent pod is on my old unit, so I know most nurses well. I took my time getting up there, to get some stuff done. I saw the attending as soon as I got there. I realized he is one that I don't like at all. He is very stubborn and doesn't listen to me at all. We don't work well together because of this. He said he looked better, which is interesting because he didn't see him yesterday! When I was there with him for a minute and really checked him out, I think he looks a bit worse. He's been running fevers today, and he's definitely breathing harder. His oxygen need isn't horribly high right now, but I keep trying to explain to them that he doesn't do the typical respiratory distress signs. He is a super shallow breather because of his severe hypotonia. So he usually doesn't breathe super fast, he just stops!
I called my ped, praying that she was back in cell phone range. Luckily she was, and she agreed that he probably needed a blood gas checked and another chest x ray. She said the aspiration wouldn't show up until today anyway, so they needed to recheck it. She was going to call up and talk to the attending. He won't be too happy that she meddled, but she knows him best, and she's who I want taking charge!!
So we'll see what happens, to be continued........

2011-09-05T19:34:00.001-06:00

Hmm, were to begin!
Last night I put Jax to bed. Everything was normal. He had some serious gagging and wretching. He wretched up more stomach acid. Once he calmed down and went to sleep, I noticed that his sats were only 92 on his typical 2 liters with the vent. I immediatly thought that he aspirated! He dropped into the 80s and I turned his oxygen up to 3 liters. He began wretching again. I took his vent off to suction, and his sats plummeted to the 50's. I popped his vent on, but his sats didnt come up. I cranked his O's up all the way to 10 liters, and very slowly, he came up. But he was gray and unresponsive. He was twitching and it looked like seizures. I called 911!
When they got there, I had his oxygen down to 6 liters, but he was still unresponsive. The paramedics didnt seemed concerned at all. Normally we love this fire department, and none of the men last night looked familiar. But they were really clueless. Im not sure if they are just used to trauma's, but they thought all this stuff was his normal. I finally told them just to leave, after they stood around, not knowing what this and that was!
I got him down to 4 liters and he calmed down and went to sleep. I decided to wait and see what the morning brought.
This morning he acted ok, but his oxygen need and heart rate were high. I knew a chest x ray and electrolytes were needed. I took him to an instacare because everything is closed and my ped is out of cell phone range at the moment. Of course the instacare said no way, he is far to complicated! And sent us to our local hospital that is a satelite to the childrens hospital. His chest x ray looks "wet", not necesarily pneumonia. What?? His white count is high. Not dangerously high, but higher than he's had in two years. His glucose was also 47. They started an IV, and talked to the childrens hospital, which wanted him ambulanced up ASAP. So off we were again to the childrens hospital.
That is were I now sit, waiting to be admitted. Im not sure yet about the chest x ray and why its so patchy when he's actually dehydrated. I guess we'll see!

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Hanging in!

2011-09-04T18:43:00.003-06:00

Jax is hanging in there. We are just trying to avoid the hospital like the plague! I'm just so thankful for the GJ tube, because if it wasn't for that we'd already be admitted. I can't let a thing in his belly, because his nissen isn't doing its job at all!
Sleep baby, sleep!

Crap!!

2011-09-03T13:36:00.002-06:00

A nasty stomach bug has made its way through our part of town. It was in my parents house, my sister and nieces who are there got it, even a cousin got it! Its a nasty one. Arina just pooped like nobody's business. Poor Mondo was vomiting, and had severe stomach pains. I've never seen my teenager cry like that, and I hated feeling so helpless when he was telling me to make it stop! I just had a horrible stomach ache. I'm glad it was no more than that, because being the only parent home, I can't be sick!
This morning has been utter chaos! I ran to the store first thing in the morning because I didn't get there last night and we had no milk or juice. I get home, suctioning Jax, and he gags and throws up stomach acid. I wondered if he was catching the bug, or just gagged because I suctioned him. So I debated on whether or not to feed him. I gave it a go, and ten minutes after I started his feed, it came right back up!
Crap, he's got the stomach bug! It really, really bugs me that his nissen isn't holding anything down, although its supposed to be intact. The first gag, everything is coming up. He's going to aspirate, if he hasn't already this morning. Luckily he has a GJ tube, so I ran back to the store, and got some pedialyte. His g tube is draining into a diaper, and I'm feeding him continuous pedialyte into his j tube. He's been asleep since then, I'm just hoping when he wakes up he doesn't keep gagging up stomach acid. That is so dangerous for him.
Then I had to run my sister and mom to the airport, while talking on the phone with the doctor to get zofran ordered. My sister has been here for 5 weeks, so its really hard letting her and my nieces go!
Prayers for the day are no aspirating, and no dehydration!

Working hard at her new skill

2011-09-01T21:47:00.003-06:00

Little miss will be 2 in just a couple weeks. She's working so hard on her new skill to have it mastered by her birthday!

Is this what you want?

2011-08-31T21:30:00.005-06:00

Is this what you want??

"funny how you conveniently didn't approve my comment about my disgust for your commentary about "free" healthcare.

How biased of you. You've lost a reader and honestly, with your attitude, I will watch as karma handles you and your family.

perhaps when you LOSE your healthcare, you will be scrambling to find ways to qualify for the free healthcare that some of our special needs children need and deserve! They didn't ask to be born."

First let me say this. The reason I didn't post the first comment, because it wasn't as nasty as this one, is because I don't post anonymous comments that are nasty. That is why I now moderate my comments. I have an email at the top of my blog. If you disagree with something I said, or as in this case, take it the wrong way, you can email me in private and we can chat.

Because you didn't post your name, I don't know what your situation is, but it is obvious that you have a special needs child and that you've been through hardships, as most of us have. I felt sorry for you in the first comment, but quite honestly, this last comment is quite creepy! Because I didn't post your anonymous comment me and my family are going to have this horrible karma? And it really bugs me that you say your child didn't ask to be born. I'm not super religious, but that tells me you think your child was forced to this life, and that they wouldn't choose their special need. It kind of sounds like you are quite cold as well.

You said in the first comment that I was cold. But if you re-read the post, I say that right there! I'm freely admitting that sometimes I am bitchy. But you are also missing the point of the post. Which is sometimes I need a slap in the face to remind me how lucky I am, and that people have it much worse.
But just so you know, I don't stay at home because my hubby makes great money and I don't have to work. I was forced to quite my job to stay home with my medically fragile child. And my hubby's job in Cali, is not this great new job in a new state. Its a mediocre job, with horrible pay. Now again, I'm grateful that he has a job, because so many do not, including a good friend with a sick child. And I thank God every day for my insurance. Trust me, I don't take that for granted!
Again, since I don't know you, I don't know your childs needs. But quite honestly, most special needs do not understand where I'm coming from. If I just had Arina, she would be a little more expensive, and it would be hard to get insurance for her simply because of her diagnosis of Down syndrome. But Jaxson costs millions of dollars every year. Much more than insurance pays for. And because I have insurance and not medicaid, doesn't mean I don't worry about things being covered. Life saving things!
And I don't think that people on medicaid are abusing the system. You don't think I have friends on medicaid? Jax will get medicaid when we move. My gorgeous nieces are on medicaid, and not because they are special needs, but because they have no other insurance right now. I have friends that had to quit their jobs so their child would qualify for medicaid.
There are things that I didn't put in this post because I knew they would cause a huge debate. And there are more personal things that I'm also not putting on here, but may talk to you about if you'd like.
But again, you would have to email me privately, we could talk, and you wouldn't have to hide behind anonymous! And I wouldn't have to use blog space to talk to one person!

No soliciting!

2011-08-30T19:05:00.004-06:00

In the three years we've been in this house, I never put up my no soliciting sign. I really need this sign, because I'm a wuss and can't say no.

This afternoon I got a knock at the front door. I peeked out the window and could see the feet of a child. I assumed it was one of the boys friends, so I opened the door. It was a little boy about Carter's age with his dad. He was doing a scout project and collecting donations for the Pennies by the Inch, or our local childrens hospital.
I freeze, I feel cornered. I can't tell this boy the things I tell the lady at Walmart that asks me if I want to donate. Things like, I've paid enough money to this hospital already, or why would I pay for someone to get free health care while I pay until I'm broke because I have insurance?
Again I'm reminded at how having a medically fragile child can make your heart cold. When all you do is fight for things for your child, and pay money you don't have day after day, its tiring. When a collections agency calls because your 100 dollar copay from the hospital went unpaid, because you have so many bills to sort through, sometimes one falls through the cracks. You want to scream...what about my son?? Why can't his 100 dollar copay be covered by all your fundraising? Just once??
I took the little boy's envelope into my house and told him I'd be right back. I stood in the kitchen, staring at this envelope. I really don't have any money for this, I have two prescriptions today to pick up for my own son. And I REALLY don't want to contribute. But this little boy was doing something good, and I couldn't let him down. So as hard as it was, I wrote a check for a measly 5 dollars, because that's really all I can contribute right now. I gave the envelope back to the smiling child, and my cold hearts melts!

I just love this pic, even though it has nothing to do with the post!

Late night update

2011-08-29T22:43:00.001-06:00

I'm trying this new application to post from my phone.
I'm exhausted and heading to bed. Arina has been fever free, just a yucky booger nose! She seems to do so great with illness. She must have one mighty immune system!
The bad news, Jax has been super junky today. I wouldnt say that he's sick yet, but thats the direction he's headed.
Still haven't heard about the inspection on the house, but an appraiser called wanting to come tomorrow so the inspection must have gone ok. I can't believe in about 3 weeks we'll be moving! Still a little freaked because we may end up moving without a set place to go! Homeless, yikes!
Tomorrow I start school with the boys. I still havent found much for Mondo. Its extremely frustrating, and making me wonder if I can really do this. Finding material for the little ones is easy, 8th grade is proving to be much more taxing!
Night all!

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Tornado princess

2011-08-28T18:20:00.006-06:00

Our princess is not climbing into drawers today.
She woke up with a fever this morning. Her eyes are looking more sick, and she's barely keeping enough fluid down to stay hydrated.
Looks like we'll be taking a trip to the ped tomorrow, working around Jax pulmo appointment.
Two things we hope its not.
1. Another pneumonia that will make them question whether she should be drinking by mouth.
2. Something contagious that she can give to her brother that doesn't handle virus's well!
We definitely don't need Jax sick right now!

A bit of reminiscing!

2011-08-26T08:12:00.018-06:00

I am finding that having a fragile child has made me a bit bi polar. Sometimes I want to be supportive of other people, and I understand that different people have different stress thresholds. And some days, nobody's child has the problems that Jax has, and I find myself wanting to tell them to stop whining!

Because I worked in the very hospital Jax spent so much time, I know more about what is going on, and I have never panicked when things get scary with Jax. My first month working, one of my heart kid's passed away on our floor. She didn't even make it to the PICU after she coded. It was horrible, and I really struggled with that for a long time. But when people are asking me how I'm so calm, that's a big reason why. Some days I miss my job so much, and other days just the thought of going to work makes me want to climb in bed for a month!
I worked during Jax 117 day hospital stay. There were times they called me on my pod to tell me they had to reintubate Jax, and I would just walk downstairs to my baby's bedside. In a way it was nice to still be able to bring in some money, and stay close to my critically ill baby. But then there were days when the bi polar feeling hit, and when a mom complains about having to stay a few extra days in the hospital, for a total of 10 days, I have to walk away to keep from screaming.."10 days! Try 3 months lady, and we aren't headed home anytime soon!"

But when it comes down to it, the last 6 years has made me wiser, and made me a much better person, minus those crazy, whiny days!
I was cleaning out Jax closet yesterday, to pack up what I could, and I came across stuff that really hit me.
I found stuff that I brought home from the NICU. Blood pressure cuffs that won't even fit around my wrist! his first pulse oximeter probe, and his little white hat. The hat he wore for a total of 5 minutes when I first held him, then got tossed to the side as he went to the NICU.

Then I pulled out some of those pink buckets they give you in the hospital. I had brought stuff home from Jax 4 month hospital stay in those, because he had so much crap! Tons of soap, tape, and that butt cream that they think works so well. (I still prefer good ole desitin.) And a few things that brought back memories. The mask they bagged him with the very first time he went into respiratory failure and had to be intubated. His little blue buddy, we called it, because he loved when the did CPT on those sticky lungs. It would lull him to sleep every time. The baseball that our minor league team gave Jax. There is a picture somewhere of a player standing next to his bed. He is heavily sedated and doesn't have a clue that they guy is even there!

I try to keep just about everything from Jax stays. I like times like this when I can reminisce about what my warrior goes through. I have these name stickers all over his room. They are name tags they put on PICU beds to keep track of which kid they are at when things get crazy. I've kept every single one. The last few I stuck to paper because I realized sticking them on things in his room isn't going to preserve them very well!

Jax PICU posters. This is a fun thing they do for the kids. They get their likes and dislikes and make them a poster. It makes the room a little less scary, and its fun to read each kids poster. Some of his posters were lost when he moved from bedspace to bedspace. Or if he went to the floor when I wasn't there and the nurses threw them away.

So I had to chuckle at myself the other day. After I packed up all this stuff, I was at the hospital for appointments. I overheard a lady tell someone that this was their longest hospital stay at 14 days. The first thing that popped into my overstressed mind was, "seriously! 14 days! Cry me a river!"
So I had to laugh, change my attitude, and remember we are all different people with different problems.
But for my own fun, and because I'm organizing and packing this stuff up, I posted pictures from hospital stays over 14 days. The first 3 are the same 117 day hospital stay. The rest are all separate stays.

But its always funner to post these pictures.

Don't think you can make a difference......

2011-08-24T21:25:00.003-06:00

If my eight year old can make a difference, so can you.
Today me and my sidekick went to the school to get a couple IEP's, and try and get some help with homeschooling work. We had to stop at Carter's old kindergarten teacher (Mrs. Nelson) and say hi. This women absolutely adores Carter, and love's to see Arina. She squealed when she saw him, because she thought we'd already moved. She said she was just thinking about us today.
This morning they had a faculty meeting. In the meeting they were talking to the teachers about how to deal with racism, etc. I guess last year they had a real problem with sixth graders calling each other "faggots". Carter's teacher from last year spoke up and said that they also needed to watch the use of the word "retard". She went on to explain that last year she had a boy in her class that was offended by the use of that word, so they had a class discussion about what it meant. She really felt like this issue needed to be addressed as well. Mrs. Nelson said she just knew it was her little Carter that was that boy. Indeed it was!!

If my 23 month old baby can make a difference, so can you.
Tonight we went to dinner. Arina had all the people sitting around us in stitches. She would make a silly face, and then laugh hysterically! I'm not even kidding that people at 4 different tables were waving and laughing at the princess. Every time they would walk by she would charm them with her grin, and they had to pause and talk to her. One lady in particular was getting a lot of waves and grins.
Now lets say in a few weeks or months, a friend or relative comes to her crying. Her unborn baby was just diagnosed with Down syndrome. She is terrified. This lady is going to tell her about the gorgeous baby girl in the restaurant. She going to tell her how "normal" she is, and how funny she was. She's going to tell her that its going to be ok, and she'll love this baby the same as all her other children! And this baby is going to do everything that her other kids did.

What can you do to make a difference??

Whirlwind

2011-08-23T14:34:00.004-06:00

Sometimes I wonder if talking about everything that is going on with Jaxson just comes out to most people as mumbo jumbo. But for those who care, or understand, and for me, here it goes!

We have a whirlwind of appointments this week and next. They all will be last appointments before changing to our Cali doctors. (To which I still don't have a ped, by the way!)
Yesterday Jax had an allergy appointment. I almost canceled it, because he can't do the breathing test the boys do. And he can't really lay on his stomach and get the allergy tests on his back. But I'm glad I didn't cancel, because my ped really wanted it, and it turned out to be really useful info. My ped wanted him checked for allergies to see if that is contributing to his angry, red airway. They condensed the tests down from 43 to 20, and did it on his thighs so he could stay in his stroller. They did all outdoor allergies, dogs, cats, and some foods that could be in his formula. He tested negative for every. single. one! It is so funny because my two boys that look like me don't have asthma or allergies. My two blondies like daddy also inherited his horrible asthma and are allergic to everything outside!
But now that we know allergies aren't an issue, she wants his nissen checked to see if its intact. Her other opinion was he is refluxing into his airway. I told her that in the last week, he's thrown up, and I've found formula in his throat when he gags. So she ordered me to switch to J feeds until we have the upper GI on Thursday. The scary thing is, even if his nissen is not intact, I'm not sure that his surgeon will fix it a third time. It would definitely have to be open, not laproscopic, so they can try to keep it from slipping again. And last time he had it done, they couldn't get a line so they ended up doing a cutdown femoral. It was horribly messy and bled like crazy! He is just running out of all access! I don't want to do J feeds forever. It makes the stomach shrink, and trying to get him to tolerate belly feeds again after long J feeds can be quite the process!
Thursday is also our last neuro before moving. They will turn up his VNS again, and we'll talk about how its working. I'm starting to think it, like everything else, is not working. I'm still seeing the same amount of seizures. And most of the time I swipe the magnet, it does nothing. I'm feeling a little defeated in the seizure area, we've tried everything there is to try, and I think we may just plain be out of options.

Next Monday in pulmo, I don't think we'll make any changes there. So far after upping his PEEP, his lungs are stable. Thats always nice to say.

The buyers do an inspection on our house Thursday. My agent told me it was today, and I got all the kids out by 8:30, then he said, whoops, its Thursday!
Needless to say he had one angry customer!
But in between a lot of appointments and therapies, we'll be packing. Never a dull moment around here!

Urgent good thoughts needed!

2011-08-22T20:15:00.002-06:00

Sorry if the title scared you. Jax is fine, and everyone else is fine.

We went under contract with our house last Friday. They accepted our counter offer, and we sold for only 5,000 under asking price, exactly a week after listing it.
Tomorrow morning they are coming to do the inspection.
I'm so nervous I could throw up! I don't know why I'm so nervous, our house is very new, and that I know of, nothing is wrong.
Its just that this whole house selling thing has gone way to perfect, and way to fast, so I'm waiting for that ball to drop! For that one thing that is going to go wrong. Because that is the way it always goes, and I'm just plain tired of living away from my hubby!
You know the saying, if it seems to good to be true, it probably is!

I don't care if there are small things that they want to deduct out of the price, but pray that there is nothing big that makes the buyer not want our home.
If I had it my way, I'd move my whole house to Cali with me, I love it!!

Videos of a princess

2011-08-22T10:40:00.003-06:00

This girl is such a crack up!
This first video is her walking with a laundry basket. Hey, whatever helps her walk! Oh and she does have a levi skirt on, its just riding up a bit, or should I say a lot!

The other day I was eating chocolate, and of course she was right there begging for some. I said Mmmmm, and she copied me! It was so cute, she scrunches up her little face. So I tried to capture it on video. She didn't do it as well as normal, she never performs for the camera! But its so stinking cute!

Happy Birthday Tanner

2011-08-20T08:21:00.005-06:00

Happy Happy 10th birthday to my beautiful Tanner!
After being diagnosed with autism at 2 years old, we didn't know how much you'd ever do. After years of no talking, now we can't get you to be quiet!
Socially your doing great, and its obvious that you are really quite brilliant in that little brain of yours! We are working on the anxiety with a new med, and your doing so great. I know that the sky is the limit, and your going to do great things!
Love you so much T-bone!

Family

2011-08-18T10:10:00.006-06:00

A week to the day we put our house on the market, we have an offer! And its not a bad offer either. It seems nowdays with the markets so bad, offers are super low, because people need to sell. This was only 10,000 below asking price. Today we are countering right in the middle, and hopefully thats it. Our house will be sold! I'm trying not to get too excited. They could still back out, or not accept our counter, who knows. But I had showings every single day since putting it on the market, and that was killing me! My headaches and heart palpitations are back with a vengeance. Hopefully they will go away after we are moved and settled!
I signed the boys up for home school until we are settled in Cali. It seemed dumb to start them here for a week or two, especially since we will be going to Cali to look at houses. But so they don't get behind, and I don't get arrested for my kids not being in school, I signed them up.

My sister and nieces from Oklahoma are still here. I think my mom is purposefully not buying their airfare back, because she doesn't want to let go of them! I don't blame her one bit, and this is a big worry for me when we move. You see, I have two brothers and two sisters. Neither brother is married, just the girls. And when we move, all the girls will be out of state, which means all the grandkids are out of state. My sister in Oklahoma, and me and my other sister in California. That is going to be really hard on my mom. And although we will be back often to visit, it still makes me feel bad. But we need this move more than ever right now. For Jax, and for his health.
With all the grandkids here, we tried to get a new picture for my mom. But with two babies, and two toddlers, it wasn't easy!
This is the best one out of about 50 taken!

Other random pictures from that day.

A slumber party

2011-08-17T08:26:00.006-06:00

How could I possible say no?

The boys insist on having a slumber party with Jax. I say ok, but it has to take place in his bedroom.

So after maneuvering some tubes and cords under blankets, moving his feeding pump to the ground, we had ourselves a slumber party
Funny thing is, I didn't hear a single alarm all night. Coincidence? Maybe.

I think Jax had a great time. My only regret... I didn't have my big camera to capture the moment. Only my little, blury, red eyed piece of crap!
Oh well!

Jaxsons new world!

2011-08-15T09:26:00.005-06:00

If your in the online special needs community you've probably heard about the Ipad scam.
A few months ago, just as Jax therapists were talking about him communicating with some kind of device, I heard about an Ipad giveaway. I was super excited when we were told that he was one of the winners. After a lot of excuses on why the Ipads hadn't been shipped, a little digging from people discovered some pretty disturbing stuff. The whole thing was a fraud! The special needs world was rocked by one, evil person. Trust was lost, people went into hiding, and a whole bunch of families that were promised Ipads were left with nothing.
Thats when a couple of SN parents, along with some good Samaritans, decided to try and make this right. Mission Ipossible was born.

Grab this Button!
They are determined to get all these kids their Ipads. The kids were put in random order, Jax was number 7, and he just got his Ipad! Please go to the website and consider a donation of any size. They have partnered with the Gwendolyn Strong Foundation, so when you donate, you know its secure and where its going. They are almost halfway there, and that is so amazing!

Jaxson's Ipad arrived Saturday

Wrapped and ready.

With Jaxson, the Ipad is a whole new world. We are starting with the most basic of things. His vision and hearing are poor, so we just want big, bright things that all he has to do is touch to get a reaction.

Its going to take some tweaking, as it can be difficult to sit him upright, hold the Ipad, and hold his hand to touch the Ipad. Indoors its hard, because he arches and tries to look up at the light. Hopfully soon he will reach for it himself. But he is definitely looking at the Ipad, so the bright is working!

How amazing would it be if someday Jax could touch words on the Ipad to tell us his wants and needs? A world we never thought possible, but it may just be!

Jaxsons name sake!

2011-08-13T09:09:00.004-06:00

Sometimes I can't believe how much this blog and Jaxson's story has touched people. The other day I got stopped in a restaurant, (the second time this has happened) and was asked if I was Jaxson's mommy. She said that she followed his blog. When I go to the hospital with Jax, I get stopped constantly and asked if this is THE Jaxson! Its quite funny actually.

So imagine my surprise when I got this email.

Hi Lacey! I have read your blog for a while now and I just had to tell you how your son Jaxson inspired the name of my Jaxson. I found your blog when we were thinking about trying for a baby a few months later we were pregnant and I just knew he would be a boy. I always have loved the name Jackson and then fell in love with your sweet boy and his story and his spelling. So I threw the name out there for my husband and he loved it too. I am glad he shares a name and spelling with such a handsome and strong boy! I hope this doesnt sound weird or creepy lol but I wanted to share how he inspired the name of our little one. I attached a picture of your Jaxsons name sake:) (the green is grass he was eating lol) Thank you for sharing his story and I wish for all the best for your family!!
Lynsi
So, introducing Jax name sake....Jaxson!
Isn't he sweet!

The Princess's stats

2011-08-11T10:19:00.006-06:00

You know that life with Jax is not so much therapies and IEP's, but more medical doctors and hospitals. We celebrate holding his head up for 30 seconds, and rolling from his back to his belly. Our more recent celebrations are grabbing for toys, and hoping someday he can communicate with some kind of switch device.

The princess had her annual testing with her Early Intervention therapist. She doesn't get a lot of services, Early intervention only comes twice a month, and when she does, its more watching her and me telling her what she's doing.
When she showed me the results, she scored around a 12 month in most area's of development. Social was the highest at 14 months. (of course!) She is currently 23 months old. I think those are fantastic results! I could care less that she is 23 months and only scoring around a 12 month range.
First of all, who made the rules of development? Tanner didn't walk until 15 months, Carter was riding a two wheeler at that age! No kidding, he really was! Every child is different, extra chromosome or not.
Second, this girl spent the first 13 months of her life in either an orphanage crib, or if she was taken out, she was plopped in a walker to spend the day. We've only had her home for 10 months, so she made 12 month strides in 10 months. I'd say that was pretty damn good!

I have 5 children, they are all so different. Mondo is 13, yet he's shy and terrified of roller coasters, he needs extra help to get schoolwork done, and he has a hard time making friends. Tanner is autistic, he is quite far behind his typical peers, but the kid can dance like no other, and he puts on skits in his class, picking other kids to play certain roles. You get him on stage and the social skills just come alive! The kid is an inner genius, and I swear he's going to be an actor/director! Carter is the all around kid. He did everything early and on his own. He is really good in school, is super friendly to everyone, and oh so helpful with anything that needs to be done. Everyone likes him and he makes friends easy. Teachers love him and I call him my student body president. Quite the neapolitan of kids I'd say. So you won't find me whining about how far Arina is supposedly behind "typical" kids. She is my little rock star!

I really think her brothers play a huge role in her development. The morning of this picture, I fed her breakfast, and was getting her bottle. Mondo and Carter were asleep on the family room floor. When I bring her bottle, she usually follows me from the kitchen to the family room, and as soon as she hits the carpet, she lays down for that food! This morning she crawled up so she was right smack in the middle of her brothers, and layed there to drink her bottle!

The boys are a constant source of entertainment for her. Actually, I think it may be the other way around. She has those boys smitten in every sense of the word!!

A big birthday

2011-08-09T10:00:00.007-06:00

We have a very big birthday coming up in our house!
That's right my princess, its your birthday!!

Last year at this time we were beyond frustrated when we found out our paperwork had been sitting for two weeks, needing a simple signature, but nobody told us. We could have been in her country on her first birthday. Instead she spent it alone, no one caring that it was her big number 1!
Which means its also been almost a year since we brought our princess home. In some ways it seems like we've had her since birth, and in some ways it seems like yesterday. Like yesterday I was panicking halfway across the world.
I got a lot of crap, people said I was selfish, depressed, and other crazy things. First of all, you go 15 hours away, in a country where no one speaks English, and no one smiles. Then come back and make that same comment. But what threw me over the edge was that I had left a medically fragile child so far away. I knew my other boys were ok, but Jax.....you never know if he's ok. And that scared me to death!
But I knew my daughter needed me, so I sucked it up, and did what needed to be done. I had really only one major panic attack. That was getting into her region, internet not working, and knowing Jax was admitted to the PICU 6 hours earlier. I had no way of finding out what was going on, and that was killing me! Luckily I had a fantastic facilitator, Serge, and he helped this sobbing mess get the internet working and check on her baby!

I still can't believe my girl has gone from this, somber child....

To this little cheeser!

I was planning a huge birthday bash for her 2nd, but really 1st birthday. Big problem is, I don't even know for sure which state we'll be in! If we are in Cali, I doubt we'll be in a house yet, so we'll probably be in a hotel or rental.
Yikes, how do I have a birthday bash during an unknown time?
I need to make sure its absolutely huge! But I also would like to let people know, so if they want to come, they can plan for it.
I'll figure it out, keep watching for a time and a place to celebrate a Princess Birthday!!!!

A bug in the mist

2011-08-07T20:27:00.003-06:00

See these packages?
Blankies. Finally ready to go out! I've only sent out one blankie in the last couple months since starting up again, so this is a huge victory for me!

I know what your thinking. Why in the hell am I worrying about blankies with everything else going on right now? Truth is, I'm not. That's why only one blankie has gone out. But crocheting the blankies is my zen. Its what I do in the evenings when the kids are in bed and I can finally sit down and watch TV. So I promise I'm not working my buns off with the blankies. Although it does make me feel bad. I know there are children that could use their comfort!

On the Jaxson front. Pseudomonas grew out from his trach culture taken in the ER. Now Pseudomonas is very common in trachs, but it can wreak havoc and has in his case. The first doctor I talked to in the office said he needed IV antibiotics. To which I was like, no sir, he doesn't. My ped, on the other hand, said she didn't want to treat it at all. With Pseudomonas so common in trachs, the more you treat it, the stronger it becomes. She is worried about creating a superbug that antibiotics won't treat.
Now I love my ped, everyone knows that, but I told her we are treating it. Period! He is so junky, and its REALLY exaggerating his airway coughing fits. I totally understand overtreating, but its no different than overtreating an ear infection. He has major symptoms, not to mention in two years with a trach, this is only the second time he's had it. So I'm not worried about a superbug just yet!
And even though his yucky coloring is probably not the Pseudomonas, it could be contributing. With his little body working so hard for basic functions, any bug can really set him back.
And with this coloring yesterday, I can't, in good faith, agree to no antibiotics!

Those purple eyes, and pale face and lips, make him look horrible!!

Increasing the peep on his vent has done a TON of good. He doesn't like the peep that high when he's awake. Not that I blame him! Every other time he's had peep that high he's been sedated in PICU. It must feel like its hard to breath, when air is constantly being pushed into those airways. Over time he'll get used to it. Although I'm so glad its helping, it does confirm that his airway is getting worse, and that is a scary thought.
So this weekend we left the worry behind. Daddy was here, and in between working on house stuff, we made sure to have fun!
Friday after painting, we went to the Drive-in. Now Drive-in's are a dying breed, and I can't believe we've never taken the boys before! They had a blast. We let them sit on top of the van, for perfect viewing! We didn't need a babysitter, the babies slept peacefully the whole time. Of course my sweet boys cried when a transformer died. When I thought they were going to kill Bumblebee, we held our breath, and readied ourselves for a complete meltdown from Tanner. After all, Bumblebee is his favorite! But Bumblebee prevailed, crisis averted! Oh I love my sweet boys!
Saturday was swimming. Jax hasn't been to the pool since our Make a Wish trip in May, and that boy needed some sun. I love this pool, it has a gradual incline, so Arina can splash and swim safely, and I can sit there with Jax, and splash his hands in the water. Making dang sure Jax gets every "normal" experience he possibly can! Sorry, no pics of swimming. With two babies to watch, no hands for camera's. Plus we weren't about to leave our 500 dollar camera sitting with our swimming stuff!

Just going swimming!

2011-08-05T10:39:00.002-06:00

Jax had a good two nights with the increased PEEP. He still wakes up at night, not sure why, but he's not coughing on the vent. The problem is still when he comes off the vent, the coughing comes back with a vengeance!
Last night the yucky, pale color came back, and its still here today.
But I'm coming to realize that this just may be Jax. He will never be healthy. His body works extremely hard just to keep him alive. Its just been through the wringer too many times.
I'll talk to my ped today on the phone, but we are not going in.
No today, we are going swimming!
Pictures to follow!

Reality.

2011-08-03T20:37:00.005-06:00

I spent the day today with Jax again in the ER. He was taken by ambulance from my peds office after high white count and low blood pressure made her worry that he was getting septic. She said the hospital would freak if they knew she'd sent him by car with that low of pressures. Of course once in the ER, his pressures were coming up, and his heart rate coming down. They drew cultures from every orifice to try and find the source of the white count. They gave IV fluid to bring electrolytes up a bit, and said I was competent enough to watch him at home for more signs of sepsis.
*sigh*
My Jaxson, my sweet boy, I wish he would just tell me what is up with his little body. Our trach/vent coordinator said its very possible for his airway to be getting worse instead of better. His chest muscles are super weak, and he doesn't really grow much. Besides the fact that he doesn't do anything normal.
She left me a message today saying she had talked to pulmo and the consensus was to increase peep to 8 on the vent and try to keep those airways open. Since I missed her phone call I didn't get to ask what about during the day when he's off the vent and still struggling? In a way I don't want to go there. Again we are going backwards. Increasing settings instead of lowering them.

You know how badly I would love to blog about tubes in ears, or therapies that we are doing. Yes, I now have Arina that does those "typical" things, and I can blog about that with her. But in the end, its always about struggles to keep my little man alive. Before I found blogging I felt so out of place in the Down syndrome world. Down syndrome was something that was barely ever mentioned because so much other stuff was going on. I hated going to our local DS parties and watching the kids run and play, while answering question after question about why Jax can't do this or that. Online I found other families that were in the same boat as us. Its refreshing, to know that we aren't the only ones.

We'll keep fighting alongside Jax, until he tells me he's done.
I'll continue to get little sleep at night, because that is nothing compared to his daily struggles.
All be it slow, we will get to California, maybe a bit behind schedule thanks to Jax.
But what would life with him be without constant drama.
We'll probably never know!!

Two tornado's!

2011-08-02T09:26:00.009-06:00

Right now I have two tornado's in the house! Tornado's in different ways, but equally as destructive!
This little stinker is figuring out new and dangerous tricks!

She's now figured out how to get her legs over the side of the stairs, so she thinks she can go down. She's lost the fear she once had. But trying to get my stairs blocked is going to be difficult because my staircase is wide, and the railing on one side doesn't really fit a gate.
Yesterday I put water in the tub to give Jax a bath. When I walked into the bathroom with him, someone else thought it was her turn to take a bath. In her clothes!
Hi mom!

Oh, its not my turn?

Jax. Well Jax is Jax, always causing trouble!
I should be thankful that he's been home for a long time. We haven't had a hospital stay, besides his surgery, in months. Definitely a record for him. But when you have lifesaving equipment in your own bedroom, its like being in a hospital every day. Equipment that for normal kids, is only used in the ICU.
He's had his longer trachs for a few weeks now, and they have done nothing to fix the coughing. He goes for a few days with no problem. Then the coughing starts, and he coughs day and night! The bad part is its getting worse. Now he even coughs on the vent, which means the PEEP from the vent that keeps his airway open, is not working well.
I have my emergency meds that help me to not totally lose my mind. Robinol to keep the secretions dry when he's coughing so much, and his trazadone, to knock him back out when he wakes up in the night coughing. But sleep is still scarce during these episodes, and I can't live like this forever! If your my friend on facebook you probably saw some video's I posted there. I'm not going to post them here, just because I'm tired and to impatient to wait for blogger to load them!

I took him in to his ped yesterday, after he coughed so hard that he vomited right past his nissen. She is so wonderful. We know its not allergies, because prednisone doesn't help. She is out of idea's, but she is going to contact the specialist's that may. She wants his nissen checked to make sure its intact. She's calling pulmo, to get her input, and I'm calling ENT and our trach/vent coordinator to see what they can do.
We read his bronch report together. It says that he has severe narrowing around the corina (the bottom of the airway where the lungs branch off) and down both sides of the lungs. These are area's that can't be fixed with an airway surgery, they are too far down. The only way to help narrowing down there is PEEP, which means the vent! If he had to go on the vent 24/7, that would not only be huge pain, but a ginormous step in the wrong direction! But when we were in the ER last week, he was asleep and on their monitors. I watched his sats drop into the 80's for a minute or so, and then come back up on their own. He wasn't on the vent at the time, because I don't take the vent with me when we go out. And I don't usually put a monitor on him for his naps, especially if we are out and about, because I don't take the monitor with me either. So I may be missing episodes that he is having.
Yikes!
I'm going to ask ENT today if its possible for the airway to continually get worse. I just don't understand why the coughing is getting worse, and why for 4 years before he was trached, he didn't have this severe of a problem with his airway. We knew if was bad, but not this bad, and it makes me super nervous as to where this could be headed!

On a good note, a few days ago before the coughing episodes started again, he had some good standing in his stander. I put his favorite toy on the tray, and he is grabbing more and more! I'm not sure if he's deliberately trying to put the toy to his mouth, or if it just gets caught on his fingers when the fingers go to the mouth. Either way, its great grabbing!!

Chillaxin!

And I just noticed that his eyes aren't really open in any of these pics! Nice picture taking momma!

Sugar and Spice!

2011-08-01T09:51:00.011-06:00

My beautiful nieces are here from Oklahoma.
I always love when they are here. After all, they are all things girl, and you know that after 4 boys, I LOVE girly things.
Yesterday was pedicures with glow in the dark nail polish.
Little girl toes are my absolute favorite!

There is a lot of preparation.

A lot of thought.

And a lot of exchanging of colors.

To find the ones that are just right!

A lot of giggling, it tickles when your piggies are painted!

Did I say how much I adore my nieces??

I can't wait until my princess is begging me to paint her piggies!
Lord knows I'll gladly oblige!!

Keeping the princess busy!

2011-07-29T09:15:00.008-06:00

After our tornado princess's day of chaos, I thought maybe if we give her a job, keep her busy, she wouldn't be so destructive!
Since her big brother is so much work, we thought we'd give her a Jaxson job.
At first we thought she could do Jax meds. She was excited about this at first, I mean those bottles are super fun to bang together...

But then she thought about the responsibility of making sure Jax got over 20 meds a day. Some life-threatening if given wrong, and she didn't think she was ready for that big of a job yet!

Then we gave her a go at getting Jax feeds, another fun bottle to shake.

But those fine motor skills aren't quite ready to get that tubing primed!

In the end, she found her job, and the one she's been best at all along!
Keeping her big brother busy, and making sure he gets plenty of kisses a day.

She is very serious about her job. After all, its a big responsibility!

But so far its keeping this tornado out of trouble!

Oh. My. Gosh

2011-07-27T22:16:00.002-06:00

Today has been a hell of a day. And I'm telling you right now that this post is all over the place. But it matches my feelings today, I'm feeling a little bipolar. Extreme highs and lows, all in one day!

But let me start with Monday....
Monday I made a call to my pediatrician only to find out her office was closed. It was a Utah holiday, but for some reason I never remember them being closed before. I was unsure of waiting any longer with Jax and his horrible coloring. I talked to the doctor on call, who at first I was told it was a doctor that knew Jax. But when I got the return call, it was someone totally different. Of course she told me I needed to take him to the ER, just to have him checked out. With his complicated history, its better to be safe than sorry. So in we went.
I've come to the realization that if Jax doesn't send people running in the ER, than he probably doesn't need to be there. I mean, when you have lifesaving equipment in your bedroom, you don't go to the ER unless your super sick. So when his vitals were fine, particularly blood pressure, I thought we shouldn't be there. They did basic bloodwork, that also came back fine, so although the doctor said Jax makes him nervous, we can't sit in a hospital and wait for him to do something. So I spent 5 hours in the ER for nothing!!

Today, I had big plans. Plans to paint and clean so my house can be listed this weekend.
If you didn't see my post from earlier today, here's a glimpse.
Literally 1 second after setting down the paint, Arina was covered! I didn't even know she was in the kitchen! 30 seconds before she was happily playing in her room.
So my day started cleaning paint off a mischievous toddler!

Then, as I'm painting, I notice that the color is way to dark, so my touch up job was going to have to be painting the full walls!
That was when I had my panic attack! I called my realtor and said I'm done, I'm officially waving the white flag. I can't do this on my own, its just too hard. He told me he would come out tomorrow and take pictures, so we can get the house listed, and then he would look at the paint and we'd figure it out!
I went down to paint the boys room, and thank goodness the paint matched perfectly, so I was able to finish that job quick.

My pediatrician called, we talked about Jax. She agreed just to watch and see what he does. Then she told me she was going to help me find a ped in California. I almost teared up right then. I honestly don't know what I'm going to do without her. Our relationship has gone farther than doctor/patient. She was my therapist when we just didn't know how we were going to survive. She sat at Jax bedside when he was dying, and when he came back. We've cried together. We've swore together. I love her with all my heart and can't stand the thought of not working with her!

In the afternoon, we are finishing up the boys room, and Mondo runs downstairs telling me Arina was choking!
I ran upstairs, and indeed she acted like she was choking. She was panicking, foaming at the mouth, and every time she would try to breathe in, no air would pass. She was crying, so I knew she was moving some air. I didn't panic, I'd seen much worse than this in the hospital. My training kicked in, and I did infant Heimlich. It did nothing. I knew I couldn't put her in the car, I didn't have time to drive her to the hospital, so we called 911. When they paramedics got there, she was moving a bit more air, but she had tons of secretions. They kept asking me if she was sick. I told them no. They sucked her out with a bulb syringe, and prepared to transport her. As the paramedic sucked her out a bit more, a marble fell out of her mouth! I don't even know where that came from! My boys don't play with marbles. So thank goodness we avoided an ambulance ride for her!
Than my pediatrician called back and said she looked at his labs from the ER. She said his bi carb was the highest its ever been. That really surprised me. I really didn't think anything respiratory or his Co2, his sats have been pretty good for him. But it was even higher than it was in August when we started the vent. So for some reason he is not oxygenating like he should, and she said it could indeed make his color yucky, even without the respiratory symptoms. So I'm supposed to call Pulmo tomorrow and she what she says. I don't know what she'll do, we've already upped his vent settings once. I don't know how much higher we can go!
So good news is my house will be on the market in the next day or so, bad news is my little's are really giving me a run for my money.

Quite the bipolar day, I'd say!

Two seconds

2011-07-27T10:31:00.006-06:00

It only takes two seconds to set me back a full day!

Its been a long time since I had a destructive toddler in the home!
Man I've got a lot of remembering to do!

The mommy radar is a dinging!

2011-07-24T21:36:00.009-06:00

My mommy/nurse radar is going off like crazy right now. Something is just not right with Jax. I hate when he pulls this. So far his oxygen need is baseline. But his color is horrid. He's white as a ghost, and his lips are either blue, or as white as his face. They are also chapped and dry, something that happens when things are just not right. He's not sleeping well at night, he wakes up at 6 every morning, coughing like crazy! He doesn't usually cough as much on the vent, because the positive pressure keeps his airway open. He's lost weight in his waist and legs, but his face and chest remain the same. His little hips are poking out big time. The bad part is with him it could be so many different things. It could be heart, pulmonary hypertension, or remember he went without his blood thinner for two days in Cali, maybe he threw another clot somewhere. Looks like tomorrow we'll be paying a visit to our ped, and probably getting oodles of bloodwork!
This picture doesn't show how he really looks. What I need to do is put Arina next to him, so you can see the difference. But he's very pale, and its hard to see where his lips start because they are so white.

I think in every post I say we've been so busy, but the busy keeps on going! My house should be listed tomorrow or Tuesday! Finally, it should have been listed months ago, but I'm telling you I smack anyone who says its not hard alone with 5 kids to get it ready! My dilemma still is what to do about a real estate agent. I have a friend that is looking for a bigger house that wants to come look before we list it. Of course it would save us both a boatload of money if she buys it! But I just worry that her house doesn't sell soon, then we both have to wait to close.
And if she doesn't want it, I don't have time to sell it myself, but also can't pay 15,000 to a real estate agent (I also really don't think they do 15,000 in work, honestly!) So we'll see how it all plays out.
This weekend Carter had his last baseball games in Utah. Its sad, but I can't wait for him to be able to play all year in Cali. No snow break there!

Best catcher in the league!

My two sisters are here, one from Oklahoma, and one from California. My one sister has 4 girls, the other, one little girl. So my moms house went from 99% testosterone, to almost all estrogen! Of course Arina is loving little girls to play with. And I love seeing my beautiful nieces!

Sadie
My oh-so-beautiful Hailey. Those eyelashes and cheeks are just plain yummy!!

Arya, she has a mass in her brain, right behind her eye. It caused seizures, which are controlled for now. And although they are almost positive the mass is not cancer, it may have to come out, which would be brain surgery. So we are hoping the neurosurgeon has some good news!

baby Olivia!

I missed pictures of my little Evie, I'll have to get some tomorrow!

Oh, and our friend Gabe is doing much better. He's off sedation and off the vent. Thanks to everyone's prayers!

Prayers needed

2011-07-21T21:47:00.005-06:00

No, these prayers aren't for Jax, but their equally as important!
Jax buddy Gabe needs prayers. Him and Jax are little twins, different problems continually put them in the same situations....sick! Gabe has spent long days extremely sick in the PICU like Jax. So many of his pictures are the same pictures we have.
His mommy was supposed to send me a picture of Gabe with his blankie. He is the first child to get a blankie since I started back making them after the adoption.
He went in for a simple surgery today, had major complications, and now is paralyzed and in a medical coma so he doesn't move his little airway.

So instead of a smiley Gabe picture with his blankie, its one of a very sedated, sick little boy. And while that's what the blankies are for, to comfort, I still hate to see these situations!

Please keep this little man in your thoughts in the coming days as he recovers!!