Friday, March 30, 2012

Very interesting results!

(Warning, picture below may be graphic for some people!)

Jax results from his procedure are quite interesting. His GI called me this morning. She is this very soft spoken, very young women. She has only been out of her fellowship for a couple of years, but comes very highly recommended to us from other moms!
She said she was very glad that she did this tube change and scoped him, instead of having IR do the change. She was very surprised at the results.
The picture below is of some of the scope. The middle top picture is his esophagus, you can see it is very red and angry. There are some nodules in there, which she biopsied. She is not concerned about those. In an adult it could mean cancer, but she see's them in kids often. The redness is interesting, since he has never eaten by mouth. What is making it so irritated? She said the biopsies will be our biggest answer. It may be because of his SVC syndrome. That even the blood vessels in his esophagus are affected by his poor blood flow in his chest. That would be a good question for hematology. Or is it irritation from reflux? Again, the biopsy will show that.

The other very strange thing to her was his small intestine. The middle bottom picture shows it. You can slightly see ulcers in this picture on the top of his intestine. She said his small intestine was covered in them! These were also biopsied. She is not sure if he has a lot of acid, so we increased his prevacid to twice a day. But when I let his tummy vent, I get what she considers a normal amount of bile out. Again, the biopsies will tell us how irritated it is.
The bottom right is his nissen. I have absolutely no idea how to read it! She said it was slightly loose, but not undone. I asked her if it would be ok to make it extra tight in a kid that you know is never going to eat by mouth. She said probably not, because it makes it hard to even swallow secretions, and that could cause problems.

These biopsies are key in telling us if we need to tighten up his nissen. She's hoping increasing prevacid will keep acid low and keep him from retching it up and aspirating. Jaxson has been really wheezy lately, which is really strange for him. That only confirms to me that he is aspirating more. She may also give him something to try and get his tummy to empty faster. I don't know if that helps a kid that doesn't get any food into his tummy though.
He is also going to have a barium enema while he's inpatient, she is hoping to get answers about why Jax doesn't poop on his own at all!
Its just a day in the life of Jax's little body!

Thursday, March 29, 2012

All done

He's done. It took a little over an hour and while I haven't seen GI, the resident showed me some pictures. His esophagus is really irritated, which is interesting since he doesn't eat. There are also some nodules that they took biopsies of. He also has some ulcers in his stomach. His nissen is loose but not blown (damn!) we'll see what she says about tightening it.
We are just waiting to go back and see our warrior!

Wednesday, March 28, 2012

At the crack of dawn tomorrow me and Jax head to the hospital for a procedure. He is having his GJ tube replaced, and some scopes to look at his stomach and intestines. She is going to try and see if his nissen is intact. Pray that it is obviously not, because that will force GI to agree to fix it. I'm tired of the blue baby episodes!

Prayers are appreciated, anesthesia is never safe with him, even with the trach. This hospital has never seen him before, and I'm quite anxious that no one called to get his history today before the procedure. He's not a kid that you can just jump into a procedure with! He should be home tomorrow evening. Should being the keyword!
We'll see what happens.
That is, if I can get myself out of bed and to the hospital by 6am!!

Sunday, March 25, 2012

Rainy Sunday bliss

We've had rain pretty much all day today.

Normally that would stink, since Saturdays are now consumed by baseball, and we really want to use our free Legoland passes!
But the rain is always much needed here, and it was much needed for our household as well.
My parents and sister went home yesterday. So with the rain, we watched movies and hung out at home all day long! We loved the lazy day, and I feel refreshed and ready to start some battles for Jax tomorrow!
March has gone by sooo slow. I'm not sure if its because daddy is so busy at work, or because I'm anticipating Jax admission April 10th. His GJ tube is not holding water anymore. I was hoping to limp along until his admission, but I just realized that is still two weeks away! I don't think it will last that long. His GI is going to put him under to change it, so she can poke around in there a little bit. She wants to check and see if his nissen is in fact not working, even though I already know its not. I demanded last week that something else be done, if they aren't willing to fix his nissen. I'm so tired of holding a grey baby, sometimes having to bag him back to life. Since I'm also arguing about the need to give him a port, and check and see what access he has, I'm hoping this admission will get the job done. I told GI I can't do this anymore. I took some pictures after a bad retching/aspirating episode last week. I didn't have to bag him, but he looked terrible. This is about 10 minutes after the episode ended and he was passed out.
Notice his color, this is after the grey went away and I put him on his vent. He is still very pale, but also noticed what is still in the back of his throat! I didn't see this until I put the pictures on the computer. I wonder how much of that went into the lungs as well!

My ped is also not listening to me, and he seems to enjoy a good argue! How many peds am I going to have to go through? Pulmo and cardio are the only two right now that understand what this boy is capable of. Maybe its because they are heart and lung doctors, and Jax heart and lungs aren't so hot. They know what can happen with one little slip! I know all of these docs are new, and haven't seen him really sick yet, but that's why they need to listen to me! Pulmo agreed that we need to have his access looked at, and if I have to, I'll get cardio in on it as well, even though she is at a different hospital!
I refuse to wait until my child is coding before seeing what access he has left! Every time I hold him blue in my arms, I wonder if this is the time I won't be able to bring him back on my own. GI told me that in an emergency they can get a line in the neck or groin.
I chuckled at her and calmly told her that his neck is unusable because both subclavian veins are gone! At least one groin is already toast, and we aren't sure about the other.

Are you ready to listen to this momma yet?

Saturday, March 24, 2012

Because I know you need your fix!

(Ignore the nose picking brother in the background!)

Wednesday, March 21, 2012

Squeeze'in it in!

Today is World Down syndrome day. I haven't had 30 seconds to even think about it!

March is also daddy's year end, so he works day in and day out.
My parents are here, and my sister from Oklahoma, along with my beautiful nieces!

But the real kicker is baseball. Added with Jaxson's cares, doctors appointments, and trying to get him ready for this admission, baseball has consumed our lives!

Notice in his banner that he is nearly a head shorter than every other kid. That is because he is 9 playing with 11 and 12 year olds. He was a first round pick into the majors. Wow!
If he's not at practice or games for his little league team, he has classes at X Factor baseball academy. He joined X Factory last week, because this kid eats and sleeps baseball! And since he plans on playing in college, and someday the majors, this extra time with ex major league players is really great! He is a coaches dream because he listens and learns. They all love him because he is by far the tiniest kid there, but he plays with the heart of the high school kids!
This kid literally plays baseball seven days a week!

So with the 5 minutes I have now, let me just say....
Happy World Down syndrome Day from our warrior and his princess!!

Saturday, March 17, 2012

IEP=blah blah blah

I finally had Arina's assessment at the Regional Center. Jaxson's isn't for a couple more weeks. That frustrates me the most simply because Jax has a much higher need than Arina for services.

After all the testing, a lot of laughs at this silly, busy girl. I got the results.
I don't look much at IEP's. Never have.
Jax has never been higher than a 3month old level in any area.
Arina is 30 months old. Does it bother me that she scored 9-11 months in speech? Not in the slightest! 12-15 months in fine motor. No biggy.
Was I ecstatic that she scored 24-27 months in social/emotional. Not really.
IEP's mean nothing to me. Arina is doing amazing! She continues to do new things every day. As long as she is continuing to grow and develop, that's all that matters to me. Who says someone is behind if they don't walk by a certain age? And who says that person is the creator of developmental milestones?
Carter walked at 10 months, Tanner walked at 17 months. That doesn't mean that one child is more special than the other.
I never let this piece of paper make me crazy! I'm so proud of my princess in what she has accomplished so far. And we will continue to teach and push her to be all that she can be!

Jax, on the other hand, is in desperate need of his therapies returned. I work with him, and get him in his stander, but he needs more. Not to make him "learn" more stuff, but to keep his body from deteriorating. The lack of a professional help is really starting to show. He spine is curving more, and his legs are getting more and more crooked. I think a lot of this is going to happen anyway. No matter how much we work with him, he still spends way too much time laying down. He only tolerates small amounts of time upright, and there's not much we can do about that!
But someone has volunteered to take over therapy with Jax until we get a therapist. This particular person has a special bond with Jax already, and is always patient and loving with him.
I personally think she is doing a great job!

Wednesday, March 14, 2012

Calling all fellow adoptive parents!

In the year since bringing Arina home, I kept telling myself I was going to transfer all of our adoption friend blogs to this blog. I have failed to do that yet! The other day I tried to add some friends to our blogroll, and it just wouldn't cooperate! So if you are one of our adoption friends, please leave your blog in my comments so we can add you!

I feel like I have neglected not only our adoption friends, but the adoption voice. I need to fight more for the abandoned, here in America, and elsewhere!
If you can't afford the cost of adopting overseas, become a foster parent. This is what I'm seriously leaning towards. If a child is removed from a home, or in a hospital, and they have no foster home for them to go to, they go to a group home. There are far too many children, and too few home's available for them.

But let's not forget our already forgotten children overseas. For those that are against international adoption, I can only quote a commentor from another blog.

"God didn't create borders, humans created borders!"

That is so true, we are all Gods children, and if you think this is acceptable, something is seriously wrong with you!

Pictures courtesy google

Participate in families fundraisers. A few dollars here and there, sacrifice that Starbucks for one day!

The many amazing families that adopt multiple children will tell you...once you save one life, and see the change it has made, it's hard not to want to go back and do it again!

I've got such a great little helper.....uh, most of the time!

Monday, March 12, 2012

Fitting in

When I first brought Jaxson home from the NICU, I was super excited to meet anyone and everyone that had a Down syndrome child.

We got involved with all the Down syndrome groups, and went to many activities.

When I brought my 8 month old baby home from the hospital after spending 4 months on his deathbed, intubated, drugged, it was a much different story. I had brought home a son that not only was now addicted to sedations meds, being weaned with methadone and ativan every two hours, but one that had suffered severe brain damage.
After the first few Down syndrome parties with people asking us why he couldn't do this or that, we just stopped going.
New diagnosis after new diagnosis, just put us farther and farther from our Down syndrome friends.

After I found blogging, I felt ready to jump back in to the Down syndrome world, and met many great new friends.
But I had a realization the other day, after talking to a friend that happens to have a DS child more like Jax. We had been on a fellow DS blog, and realized that we didn't know any of the adorable DS kids on her blog.

Not a single one.

We can join support groups for many different things. Seizure, congenital heart defect, CP, Down syndrome. But not a single one of those groups can totally relate to us. We fall into a very small category of medically fragile, and I'm finding sometimes that can be a pretty sucky place to be.

I know its hard, and maybe even boring, to read updates and what may be going on with Jax.
There's no really good way to help people understand what we go through. He may look good in a certain picture, but what go's on inside that little body is a constant battle. Every breath counted, every heartbeat watched. An ambu-bag hangs on the corner of his bed, because there have been many times I've had to push breathes into my son's lungs. Many times I hold a grey boy, because he's just aspirated, and struggles to catch his breath again.
Many times he should be hospitalized, as a matter of fact, we spent Saturday night in the ER. They talked about admitting him. I said no way.The only reason we were even in the ER was because it was a weekend and we needed testing.

I know when Jax has to be admitted. It may be far after he should be, but I have chosen quality before quantity with Jax.

I'm so thankful for my DS friends that have stuck by us. Who love Jax for who he is, even though its drastically different from the rest.
Now we do have Arina who is more typical, but we can't forget that she wouldn't be in our home if it weren't for her amazing big brother.
The big brother that brought Down syndrome, and so much more, into our lives!

Wednesday, March 7, 2012

Are you an advocate?

Anybody can be an advocate.

You don't have to have a child with special needs.
Anytime you hear the "R" word, remind that person of how hurtful that word is.
If you do have a child with special needs, don't hold them back. Don't be afraid that they are different. I know it's a scary thought, and we want to protect our kids, but the only way we can teach, is by putting our kids out there for the world to see! Put them in schools, put them in sports, and take them to Disneyland!

We found Arina's boyfriend Jay at Disneyland the other day.
They were both very excited to see each other!

Pinky swear means best friends forever!

She is the only one allowed to touch Jay's drumsticks.

Jay gave Jax a pinky swear too, two best friends!

Jay is an advocate. He is teaching everyone at Disneyland about special needs. He spends three days a week there, and the staff knows him by name.
I had never yet seen a parade with Jay, but I soon learned why he always had the drumsticks with him.
Here they come, and Jay is ready!

Even all the characters know Jay

Arina took notice, and she was ready for the characters, screeching at the princess's. Of course they were on a float!

Then a quick kiss in between floats!

Everyone watching the parade was watching our kids. They are going to take that home with them. When they see a Down syndrome person, they are going to remember the cute kids at the Disneyland parade.

Please, please, please, spread the word to end the "R" word! For our children's sake!

Monday, March 5, 2012


Yesterday was a huge celebration! A celebration with friends that have become family!

We celebrated our favorite warrior princess's fifth birthday!

Birthdays are always big milestones with our warriors, because they fight so hard every day!

These warriors have changed our lives, and the lives of so many others. They make us better, more compassionate people!

Wow, aren't they amazing?

Close friendships made from the world wide web!

Happy Happy birthday to our favorite Miss Zoey!!

Saturday, March 3, 2012

Doggy lovin!

You know you have a good doggy when....

Their still willing to give the 2 year old kisses!!