Friends, we're falling apart over here at our house right now! This is the first time since we moved to California a year ago, that we've had a nasty bug, and now I think we have two nasty bugs!
Jax has been more gaggy and retchy the last couple weeks. This doesn't necessarily mean he has a bug, I think its just his sensitive gut. When he gets a stomach bug his gut completely shuts down, and we wouldn't be getting food into him at all. He did aspirate during one of his vomiting episodes. Luckily we've been able to handle it from our home hospital because we have meds, oxygen, and the vent!

Carter had a croupy cough about a week ago, that only lasted one day. But since Friday, he's been a wheezy, asthma mess! I tried Jax zopenex with him because he didn't like the jittery feeling he gets from duo neb, especially before a baseball game. I had to take him to the ped because we'd gotten so lax here at sea level, that I was all out of their asthma meds! He has an ear infection, and we are pounding hard with treatments because even after one treatment in her office, he still sounded horrible! Just a reminder that the asthma is going to follow us wherever we go!
Our little princess has also had a croupy, yucky cough and fever since Sunday night. She has an ear infection as well, and although she usually acts fine because she has a high pain tolerance, I can still hear major strider when she breathes! She also came home from school Thursday limping on her left leg. She continues to limp, but the ped doesn't want x rays just yet because he can't feel any obvious problems. She doesn't seem bothered when we push or bend her leg in strange positions, yet she continues to limp. I've wondered about her hips for a while now, because she will limp at random times. But the doc couldn't feel any popping, although I'm not sure that means anything! This is probably another thing I'm going to have to push!

Daddy was up all night last night vomiting, so it seems we have a stomach bug and respiratory bug in our house. Luckily Jax hasn't seemed to get hit yet. But I'm waiting for it to makes its way through the family! I think me and Jax will have to hide in his room with masks on for the next week!

Hopefully we'll be back to our fun times soon!

This women continues to say she did nothing wrong because she knows it pushes our buttons!

She thinks that any press is good press.

Lets make her wish she never thought that. Lets let her know that she messed with the wrong group of people!
What she doesn't realize is that special needs families these days are not locked in a corner hiding our children away. We're out there, and we aren't going to stand for this kind of hate!

Bring it on Ann, because you don't know what kind of fighters we are!

The great school fight begins!

I guess it was wishful thinking that Jax would just magically have this fantastic entrance into the school world.

I was wrong!
I should have known it wouldn't be easy. Life with Jax just isn't.

I signed him up for school, and waited for the phone call from special ed. The teacher called me, originally thinking they were going to set him up for home school, because that's what his last Utah IEP says. But I told her we wanted to try school with him this year. She works at that school, so we talked a little about it.
Here's where it gets ugly. She told me that trach kids don't have to have a nurse with them.
It gets even worse. They only have two LVN's in the whole school, and not a single RN.
She said the teachers are trained to suction. Ok, that's cool, after all I can train anyone to suction. But I just did not feel right. The more I got input from other people, and the more I thought about it, the scarier it seemed. EVERY single person I talked to had at least two RN's on campus. And EVERY one I talked to said the trach kids have a nurse.
When I talked to the teacher yesterday on the phone to set up a home visit, I expressed my concerns. I guess the LVN was standing right there, so she got on the phone. Honestly, that actually made it worse!

LVN: have you ever used a bonkers?
ME: A what? You mean a yonkers?
LVN: Oh ya, a yonkers. Our trachs usually use those. And some do have those tubes with the numbers on them.
ME (with my jaw on the floor): You mean a suction catheter?
LVN: Oh ya. The nurse does have to do the suctioning if its that kind of suction, because thats deep suction.

Ahem....this nurse didn't even know what a suction catheter was, and lord knows you can't suction a trach with a yonkers suction. That is for oral suctioning. And are they going to call the nurse every time Jax coughs? She might as well just stay in his room all day!
What if Jax decannulated himself at school? While they are running around trying to find the nurse, who probably has never put a trach in, Jax is not breathing. The teacher kept telling me they aren't afraid to call 911, and they've had to do that many times. Yes, so have I! But I don't want 911 to have to be called on something that can be handled with a trained person. Jax can't afford any more brain damage, it would be a death sentence for him!
Bottom line, he doesn't go to school without a nurse. And a nurse that knows Jax.
I emailed my ENT, who said every trach has to have a nurse with them. Period. I'm arming myself with a letter from her when we do his IEP. I may even call pulmo and cardio as well, for extra protection. Because when the teacher came out today to meet him, she made it sound like if I wanted a nurse for Jax, he would have to do home school. I know the system has to give him the opportunity to go to school, even if it means getting him a nurse. They are probably trying to save money.
I really want to give him the chance to try school. I know the school is good, I'm in no way saying that its not. I think this teacher does some great things with her students. I'm simply saying I don't think they are medically equipped like they should be. Jax should be able to do all their stimulating activities too, not be stuck at home.
I go out to the school next week to meet the principal and the RN (whose not on campus every day) Please send out great vibes that they will understand what Jax needs, and we don't have to fight with the school system for Jax to have equal rights to attend! But if that's what we have to do, I'm prepared. Battle for Jax is what I do best!

Really???

I honestly didn't even know who this women was! Until this response she made to her use of the "R" word. Her obvious enjoyment in the fact that she made a whole lot of people angry!

I can forgive someone who uses the word once, apologizes, and never uses it again. I mean, no one is perfect. I know I even said it a time or two before I had Jax.
The problem is she sees no problem in using this word. She says nothing is the same as saying the "N" word.
Um, excuse me, its EXACTLY the same thing! You are using it in a hurtful manner that refers to a specific group of people.
I can only hope that we can all shun this ignorant women, and maybe, just maybe, no one will watch her anymore. On whatever it is she's on, because like I said, I don't even know who she is!

A trach post

A friend asked if I would do a post about trachs.
I never really thought about it, but its a great idea!
A tracheostomy is a surgical opening into the neck, below the vocal cords, where a tube can be placed for breathing. There are many reasons a trach is placed. Damage to the upper airway from some kind of trauma or tumor. It the patient has tracheal malaysia or narrowing of the airways. Some are trached for their lungs, like if a patient needs a ventilator. Or for paralyzed people that need a ventilator to breathe.

Jax was trached originally for his lungs. But once they trached him, they did see that his airways were extremely narrow, all the way down to the bronchi in his lungs.
I had been taking care of trach patients on a weekly basis before Jax was trached. I feel very blessed to have that knowledge because a trach can be a scary thing if you've never seen or dealt with it before.
I know adults and children can be very different. Since I've never taken care of adults, I'm not going to go too far into their care. I know that most adults don't wear any kind of cover over their trachs. Some don't even have a tube, just a hole in their neck. Which I find interesting since if we take our kids trachs out, the holes close on their own. So obviously something different is done with these patients to keep those holes open.

Children are a whole different story. I can't find my pics of when Jax was first trached, but my blog post with pictures is here. When you put a trach in a person, you are bypassing the body's natural filter, the nose. The nose filters, and humidifies the air you breathe. If the child is not on a ventilator, they have whats called a nose, or HME that covers the trach. This replaces what the nose is supposed to do. Its not the same thing, but its pretty close! A trach with just the opening and no HME looks like this.

I've seen a couple children with nothing over their trachs. I don't recommend that. Besides the fact that stuff can go in that hole, the air they breathe is not being humidified or filtered.
Another thing a trach does is make the body produce a lot more mucous. When you put a foreign object in the airway, the body automatically makes mucous to fight it. That is why you always have to have a suction when you have a trach. It also makes kids much more work because you can't leave them alone in case they need suctioning. Some older kids can just cough up their junk. Jax does not have a strong enough cough to get the junk out. You always be careful if a trach kid is coughing because some can shoot junk out of their trachs like a canon!! I've been coughed on many times when working in the hospital. Sounds gross, and it is!

HME's come in many different varieties. Of course there is the ventilator that some children use.

There is also a mask that blows humidified air. But your still connected to a fairly short tube. Most kids sleep with this if they are not on a ventilator. An HME is for portability. Some kids can get really dry and yucky if they don't use this mask as much as possible. Its the best thing to keep the trach humidified.

Then you have your HME's. There are so many different kinds. The one in this picture can be worn alone. Its the white piece. The green is an oxygen attachment. This is getting to be obsolete though. Its big and bulky. I hated it for Jax.

The nose below had the oxygen attachment right on the HME. Its much smaller than the green piece above. You can also pull that tubing off if your child doesn't need oxygen. (Sorry its kind of blurry!)

There is also something called the passy muir valve. This goes over the end of the trach, and allows kids to vocalize. Some kids can be heard without this valve, but it works great for kids that otherwise can't. Jax doesn't tolerate this valve. It makes the child work a bit harder, so some sensitive kids, like Jax, can't use it.

If you have a trach, there are a few more supplies you need to have with you. The suction, of course, is always by Jax side! I also have an emergency kit in a big baggie. It has an extra trach (you always want an extra trach!) an extra HME, and any other trach supplies we use. Some people also carry an ambubag. We have one in the car. Some people don't need this, but its basically CPR with the trach. You put the bag on the trach, squeeze it by hand to give breaths to the child.

I think the biggest thing to remember with trachs, is that people live a totally normal life with trachs. Every child is different. There are kids that are much more work. If their trach comes out, or they need suctioning, they can stop breathing or drop their oxygen levels very fast. There are other kids that pull their trachs out all the time, and breathe just fine without it for a while. If your child gets a trach, you will learn what their normal is very quickly.
There are many times I say I hate the trach. But its like any other thing, sometimes it is hard. If Jaxson is really junky, there are times I don't sleep all night, suctioning him out. Sometimes its hard in public to suction kids out. It can make an outing harder if you have to constantly suction. So no, its not always easy, but life is not supposed to be easy!
One really great thing about the trach is if you have a child that has a tenancy to have respiratory failure and need the ventilator, the trach makes it much easier. No more traumatic intubations! A lot of times you don't need the nasty sedation meds with a trach and ventilator, like you would if your child was intubated. We LOVE that part most of all! Surgeries are easier, and illnesses are easier.

Ok, question time, please feel free to ask if you have any questions or I left something out!

eeny meeny miny moe!

Oh my princesses!
Hmm, which one is my favorite?

They are all so beautiful! Cinderella is one of my favorites!

Oh she's pretty!

But there's Ariel! On the other side! It took me a while to find her because her beautiful red hair is pulled up!
But I found her!

Pictures of a warrior.

The last week or so has had me thinking so deeply, that my brain is screaming, OVERLOAD!
I've been going over pictures of Jax from back when he was a baby, looking for things to post on my Facebook for Down syndrome awareness month. He's been so healthy lately that these pictures pushed me right over the edge into, wow, we've been to hell and back....multiple times!
A few things added to my brain overload. Mondo mentioned that a girl friend of his was talking to him about religion. Some of you may know we aren't an overly religious family. But what he said to me that night, I never knew my son was thinking! He told this friend that he will believe in God if Jaxson would magically lose all of his problems. He said to this friend that if God controlled everything, why would he make children like Jax suffer? He was very serious, and obviously very angry and confused on why things like this happen. When I tried to tell him a little of what some people think, I'm not very convincing. After all, I question things like this as well!
Daddy's work moved locations. Now instead of a 20 min drive its an hour to an hour and a half! Its only been a few days and its making me nuts! We don't want to move the boys again that just got settled into school. He may actually start looking for a job closer. He just doesn't get payed enough to drive that far. Keep your fingers crossed he can find something. This just plain sucks!

Then on Saturday, at Carters baseball game, we had a real shaky experience. All of the ball fields had games going on. Right in front of all the boys and their families, a small cessna airplane crashed just outside our baseball field! We lived for years right next to a small airport, and never in my life had I ever seen an airplane crash. I remember every time I would hear an airplane I would think, please don't crash on my house! But nothing prepares you for a front row seat, with a field full of children! Carter said he saw the airplane hit a tree, that was out of my view because the dugout was in front of me. I heard someone else scream and looked up just to see it nose dive and cartwheel before stopping. I jumped up and ran over to see if I could help. Luckily both pilots were out and walking around. One had a nasty gash in his forehead, but they were ok! Leaving the ball field after the game, we saw the tree it hit. It was about 10 feet behind the fence where a baseball game was going on! How lucky that not only the passengers were ok, but that the airplane was able to avoid the children, and land just across the street in the dirt.
Wow!
I try not to question things, it just leaves me more confused and upset. Sometimes things happen that can only be described as miracles. Other things, seem to be pure suffering.
But since I was digging through pictures, here's some super cute, some serious, pictures of Jax over the last 6 years!
Major picture overload, but I couldn't get over his long, beautiful hair! These are all pre trach.

Q&A time!

 We had one of these www.bealift.co.uk for a long time - the long red handle lifts the seat up level with the bath edge or lowers it into the bathtub. I wonder if it's available where you are? Made a big difference to my screaming back.
You know, I'm not sure if we have those here, and I can't quite tell how it works. The only other reason I don't like bath chairs is because usually they are out of the water, and I don't want Jax to freeze to death while taking a bath! The only ideal situation I can think of is a higher tub, but I've never seen those before!

 You are super-brave to have read the comments on that article. I avoid them like the plague.
Actually Becca, I avoid them to! I just hate reading ignorant people's comments. The only ones I saw were the ones on that first page that I clicked on from Facebook!

 I'm reading your post about Jaxson's story and I was wondering if you sued the hospital for letting his glucose drop to 0 (which I believe is what caused his brain injury). I found that especially horrible - were they not paying attention?!
First of all don't worry about offending me. Almost every single person that hears about the brain injury asks this question! Yes, it was a big boo boo, it was not something that happened because Jaxson was so sick. They really weren't paying attention like they should have, in the ICU with his nurse only having him as a patient. The injury is whats called a hypoxic ischemic injury. Honestly, even with my background, I had no idea what kind of brain damage could come from glucose dropping like that. One of these days I'm going to do a video with Jax, because I'm finding that even a lot of my friends don't understand truly how delayed Jax is from this injury. We were told by cardiology right after if happened to take him off life support, that they could no longer fix his heart. It was horrible! But I really can't discuss anything that happened afterwards. Sorry! 

this is fantastic, oh how I would love to take Junior to Disney one of these days
Oh Heidi, you totally should! You can stay with us, we have plenty of room here!

Do you think that maybe he just has a plug deep in his lungs that gets moved around? Lillian had that when she had her trach.
No, unfortunetly it isn't a plug of any kind. He is usually clear as a bell. He's been known before for actually collapsing his airway and the trach tube too! Hopefully these new, bigger trachs will do the trick!

school? wow! that would be huge for Jax!
Your telling me!! As soon as his old IEP comes in the mail, we are getting him signed up with the school district. Even now thinking about it gives me the chills! I'm so excited for him, but so scared as well. I would never be able to send him to an inclusion school, only a school for severely delayed kids. The reason being is with all the kids wheelchair bound, there is no running around touching everything, and the staff knows that these kids are fragile, so everything is kept clean. Although the first time Jax gets sick, don't be surprised if I yank him out!!

Remember friends, if you haven't "liked" our Jaxsons blankie facebook page, please do and help us spread the word!!

We got mail!

Something came in the mail the other day for Arina and Jax!
What could it be??

Its from our friends at Disneyland!
They found our blog, and how much we adore Disney, and wanted to send our littles something special!

Minnie Mouse autographed a picture for Arina,

And Mickey one for Jax!

They sent Micky and Minnie dolls, but wait.....

 whats underneath all that?

BUTTONS of course! Lots and lots of buttons!

Here Jax, a Mickey for you.

I'll just put him right here next to you!

Thank you so much Disney!
Now lets get some special needs kids in your advertisements, after all, you really do cater to them.The special needs community is bigger than ever, and out there more than ever. It would be huge, it really would!

"Acceptance"

Recently a website posted this question. "would you abort your baby if you knew it had Down syndrome?" Some of the ignorant replies were just plain maddening! "Yes, I could't handle having a disabled child", "their life wouldn't even be worth anything." It was bad. For me, its not the question of pro choice or pro life. Its these people not wanting to be bothered by a child with special needs, not realizing your child can become special needs at any time!
So here's my question to these people...what would you do if your healthy baby was born with the cord wrapped around its neck twice? She/he came out blue, and had to be resuscitated, and you didn't know until the baby was older that she/he has cerebral palsy? Would you put a gun to that baby's head and pull the trigger, because they were no longer "normal"?
What if your 7 year old was hit by a car on their bike? They ended up paralyzed from the neck down? They need a ventilator to breathe for them because their chest muscles no longer work. Would you then put a gun to that childs head?

When Jaxson was born and we found out he had Down syndrome, we embraced it. There were no tears, no mourning the loss of a healthy baby. I know that is not the norm, and I'm not really sure why neither of us had those feelings.
But I know what its like to have a child, and then suddenly have them nearly taken away, left severely disabled. It sounds strange, since he had a disability, and multiple medical problems at birth. Jax suffered his brain injury at 6 months old. He had already been in the hospital for two months, and was in for another two months after the brain injury before going home. It took us a while to see how debilitating the injury was. After all, he had been intubated and sedated for 4 months, so he was going to be quite behind where he should have been.
There are some children with Down syndrome that can't walk at 6, but I don't know of any that are like a 2 month old baby.

Sometimes it can by hard!
Yesterday his bath was an utter disaster. He made his GJ tube bleed, because his hands go right for it when its uncovered, and I don't have 12 hands to hold and wash. Because of his blood thinners it bled like crazy! I didn't really want to bath him in bloody water, so I let the water out, and tried using a cup, dumping fresh water on him. My back was screaming at me as I tried to hold his head up out of the water and wash his hair. To top it off, I nearly dropped my total dead weight 6 year old's slippery little body getting him out!
People were so kind, they were asking if I had a bath chair, or nursing for Jax. My mom said she wished she was closer so she could help. The thing is, no amount of help is going to make his bath easier. I could have ten people standing in that bathroom, it doesn't change the fact that having a child with severe delays just plain sucks sometimes! The bath chair is a great idea, but it sits down in the bathtub, so I still have to lift him up and out, and I still have to break my back bending over the tub.
Ideally, I would have the money to build a house all Jaxson friendly. I would put oxygen and suction into the walls, and he would have a custom bathroom, with a bathtub up off the ground at my standing level. But we all know that it will never happen, so we just do the best we can with what we have.

On the flipside, when Jax accomplishes something new, the victory is much, much sweeter! You know if you have a child with a disiblity it makes all their accomplishments more exciting? Well, times that by ten! That's what its like with a child that's severely disabled!
A couple years ago, right around the time we brought Arina home, Jax started grabbing his oxygen tubing. This was huge, as he had never held, or reached for anything with his hands. Now he will grab any tubing within his reach. He reaches down by his side, because he knows that's where the tubes sit. It very repetitive  he grabs the tube, pulls it up and lets go. Over and over again.
Last night Ray found a toy that I had been looking for ever since we moved. Jax best buddy Gavin sent it to him. I had been wanting to try this toy with him again, because its long and easy to grab. Its super soft plastic, so if he drops it on his head it won't hurt. I haven't been able to find it anywhere, so I was excited when Ray found it.
I gave this toy to Jax, and watched. He grabbed it when I put it down by his side where he normally grabs tubes. But when it ended up over his head, he reached for it!!!!!!!!
He knew that toy was above his head, he looked for it, and he reached for it!!!!!!

Sorry, its hard to see the pictures because the blanket is so colorful, but you can clearly see him reaching and grabbing.
You don't even know how huge this is! It shows that he likes this toy, that he prefers it, and wants to play with it!

Even turning his head to find it!

Jax is like a 2 month old baby. He is almost 7 years old. He can't sit up, he can't even really hold his head up. Carrying him is like carrying a big, floppy doll. Jax doesn't play with toys, he can't talk or sign.
Showing us that he likes this toy by grabbing it over and over is huge!
I'm so proud of my warrior boy, and I just wish that people would understand that yea it sucks sometimes! It can be so hard, but its oh so rewarding!
More rewarding than any job, car, or other material thing that seems to be so important to people. If only they could experience true joy, maybe, just maybe they would understand!
Understand that you don't focus on the hard, you focus on the happy. I would much rather sit all day and kiss his tiny piggy toes, than go to any corporate, high power job!
If these people could have been in my house last night, while we were all jumping and dancing, watching Jax play with this toy, I guarantee there wouldn't be a dry eye in the house!!
We'll teach them, we will. One person at a time!