Monday, January 28, 2013

Speech and the stubborn child!!

Lets talk about speech!
You probably already know that one big area that children with Down syndrome struggle with is speech.
Arina is really struggling with speech, and its making me crazy! Its not making me crazy because she has down syndrome and so its a given that she's going to struggle. It almost seems like with her, that its just simply laziness! Even though I have a 7 year old with Down syndrome, I feel like a new DS mom with Arina.
And I have a lot of questions, and a lot of the same frustrations I've been seeing in other moms for 7 years now
The good thing is that we have no problems with communication. She signs so well that we always know what she wants. Although I love signing, I wish she would just use those words and talk! Her speech therapist says she will form her mouth into the first letter of the word, but she still uses nasal grunting and signing. That's exactly what she does at home as well. I'm not sure if I can say that she has even one word, because all of the words are beginnings, like ba or ma.
The other day we were sitting in the front room waiting for the bus. Arina picked up one of the boys books, it had a picture of a ghost on the front. She would scream, ahhhhh, throw the book, run to the corner of the room, and put her hands on her belly and move it in and out like she was panting. How she knew this kind of pretend play, I'm not sure. She is such a smart little cookie, why won't she talk?
Another thing we know about most DS kido's is they are stubborn as all get out! I know this is why Arina isn't talking. Nothing else is stopping her. She is just happy and content where she is, although she has gotten upset a few times when we can't figure out her sign and what she wants.
Her speech therapist and I will just keep on pushing this stubborn little thing, and I'm sure once she starts, she won't ever be quiet again! But that's ok with me!

Next discussion....discipline and the crazy preschooler! Ei Ei Ei!!

Friday, January 25, 2013

Since I started Jax Facebook page,, the blog has literally fizzled! Now I have to decide if I want to keep the blog up and running. I'm sure that I will, I just can't let it go, but I'm going to do some updating. Technology develops faster than even I can keep up! I need to update the blog with the latest and greatest technology, to keep up with everyone else!
I love having the support of the blog and now his Facebook page. The fact that Jax can spread love through a computer screen is amazing. I often think of how nice this support would have been 7 years ago when Jax was born. We struggled through the scariest times of our lives with him alone! And it sucked!
We love and our so grateful for all of our faithful friends!!

Sunday, January 20, 2013

Happy Sunday!

Happy Sunday to everyone! I love it when I don't have to worry about getting the kids up and off to school in the morning. Hmmm, what should we do tomorrow?

Carter has been playing basketball. The kid is a sports nut! He's only played baseball besides one year of soccer when he was teeny. He is going to be the kid in school that is on all of the sports teams! He's never played basketball in his life and he's one of the best on the team. He is just an all around good athlete. I will let him play whatever he wants, with two exceptions. No football, and baseball always comes first. He is going to play flag football, but I won't let him play tackle football. As much as he begs, we just won't do it! We let him take a month off from baseball. And as much as I miss watching him, I think it was a good thing. As much as he loves and excels at baseball, even he was getting burnt out. And if we want him to continue to dominate, we need to take those clues from him. He just had his first baseball practice yesterday, and I can tell he's anxious to get going with it again!

Jax had his upper GI Friday, and it was a total waste of time just like I knew it would be! I wish I was more firm in saying no, we aren't spending the money on that test when a scope will show a better view of the same thing! They look at the x ray for 30 seconds and say everything looks fine, when we know in fact it is not. Sometimes I wish doctors would remember to rely more on what the child is doing than what their "state of the art" machines show! I'm waiting for GI's call on the results and then we'll schedule surgery for the scopes.

Little Miss has been anxious to get back into our Disneyland trips, and yesterdays trip was a great way to get it started! She wore her Cinderella dress, and what two favorite princesses are right inside the gate? Well Cinderella and Ariel of course!!

Checking out Cinderella's shoes!

Oh Ariel! If only you really knew how much this little girl loves you!

Wednesday, January 16, 2013

Bad Bad blogger!

Man I have been a horrible blogger lately! I think part of it is Jax Facebook page is so much easier and faster to update. So this kind of gets pushed aside. If you want to follow Jax on Facebook, here is his page

Jax has been struggling a bit lately. He got the stomach bug that we all had. And while he avoided a hospital stay. (barely) It really hit him hard, and we are still seeing even slower motility. Jax biggest problem right now is his severe reflux. This is a big issue because the nissen surgery is so controversial. Its not a cure for reflux, and because brain injury kids have a tenancy to be gaggy and retchy, people just assume that Jax will always be like that. But I know Jax better than anyone, and when his nissen is intact and he can't reflux, he never gags or retches. Never. So I know he vomits from reflux, not from being a neuro kid. But because the nissen can fail, and his already has, people also say, how many times are you going to redo it before you cause more damage. I get that as well, which is why we are pursuing all options before making a decision.

First off is an upper GI sometime this week. Not my favorite test as in the past it hasn't shown reflux in Jax. They are only going to put a couple teaspoons of barium in, because of his high risk of aspiration. They don't want the die to shoot right up and into his airway. Next is surgery to scope from top to bottom, and take biopsies. Then we will determine where to go next. There are two options they are really discussing. Redoing the nissen one last time. This time it will be done open, which it should have been in the first place! So they can really get their hands on it and make sure its snug. If we do try the nissen, this will be the last time its done on him. If it fails again...well then we're screwed!
The other option was to put in a separate J tube. I really didn't like this option at first for two reasons. First, its another button on Jax belly that he can grab and pull! Second, it doesn't stop the problem of aspirating on stomach acid, which is what we are dealing with. After I talked to GI, I understand better what their reasoning is. Right now he has a GJ tube, which goes down past his stomach into his bowel. But he has ulcers in his bowel, and they are wondering if the tube is irritating the bowel. Also, with that tube going down, it keeps open the sphincter between the stomach and intestines, allowing bile to come back up into the stomach, and then up and out as vomit. The separate J tube would be much farther down, and it wouldn't be holding open that sphincter. I'm not sure right now which option I like. Actually, there is a chance they may do both. He needs this vomiting taken care of, because he can't be aspirating like this, its going to cause more major problems in his lungs. But if he does indeed have ulcers, than the J tube may be necessary. I just hope when the time comes, we do what is best for our little warrior!

Yesterday I had to take him for labs. He is still quite pale and lethargic from his sickness. Watching him get poked over and over, because his poor veins are shot, was almost too much for me! Even after years of going through this with him, for some reason that day was bad. After the labs were done, I sat in the waiting room and just held him for a while. I whispered how brave a warrior he is, and that I'm so very proud of him. Sometimes I just don't even want to let go of him. I'll just hold him and snuggle him forever!

As for Arina, she is still the same ole feisty maniac! Here is a special Gangham video of her. Seriously, I've never laughed so hard in my life!!

Friday, January 11, 2013


Dance dance dance, we are going to Disneyland tomorrow!!
It's been far too long and we need a get away from the craziness this new year has brought so far!

Wednesday, January 9, 2013


Sorry for the lack of posts, its been utter madness around here!
If you didn't already know, we are back home in California. My mom is improving every day, and its becoming more apparent that she suffered no brain damage from the infection! This is truly a miracle! She came out of the coma and is walking, talking, and trying to eat more. We were figuring that she would need months of rehab, but I don't even think she will need to go to a rehab. I'm amazed at her recovery. I'm trying to decide if I still want to make the trip back to Utah next week to help out, since she is doing so well!

We brought the stomach virus, or as the boys call it, the "stink bug" home with us. It has been ravaging the family for the last week! Today I'm feeling queasy but functional, and its a good thing, because Jax has been vomiting all morning! Knowing how this bug knocked me on my butt, right now I'm just praying that Jax will be able to handle this at home. Last time he has a stomach bug, he aspirated and spent 9 days in the hospital trying to get that gut to tolerate food again! He lost 3 pounds that week. 3 pounds he couldn't afford to lose.

I don't have any pictures to post. The camera hasn't even been touched since Christmas, because we have been going non stop since then!
So I thought it would be a good time to post some old, fun pictures!

Saturday, January 5, 2013

The last four days have been a horrible roller coaster.
It's been a few years since we've been on that roller coaster with Jax. When they tell you they have a very low chance of recovering. It sucks all the same when it's your mom!!
I look at the purse we got her for Christmas. The one with the different covers you can change. She wanted one so bad, and it sits in her room, unused. All my nieces and my sisters are here, but it's not for playing and having fun. Even though I always love seeing them! I want to eat cookie dough with my mom and sisters, laughing so hard we are crying!
Yesterday morning they told us the chances of my mom recovering were very low. That she had been out too long without responding. We were supposed to drive home today, but I couldn't leave my mom like that. I've gone from that extreme low, to today, were they've turned off all of her sedation and she is shaking her head to questions! She is still intubated. They are hoping to get the tube out tonight or tomorrow. I have to drive home tomorrow. Ray has to work and I have a few important appointments for Jax. I feel much better leaving knowing that she is improving. Although I hate to leave her. I want to go back soon, I'm just not sure when it will happen, as ray can't come and mondo really can't miss school. I cant afford to stay in a hotel for another long period either. But my parents house is full and there are just too many of us to invade small places.
I'm just glad that my mom will recover. We don't yet know how much she's lost, and so that may be a long recovery. But she's here, and that's all that matters! I wasn't ready to say goodbye to my mom. It's way too soon!
A yucky tummy virus is going through the family like wildfire. Carter and Arina have both been sick, and I'm just praying Jax doesn't get it because last time he had a stomach virus he spent 9 days on the hospital!
Here's a few more pics from Jax page. If you haven't joined us there you need to!

Wednesday, January 2, 2013

Thank you for the well wishes for my mom. I really do love hearing from people who don't comment much!
As many times as Jax has been intubated, I mean for him it's just another accessory, it doesn't help seeing all the crap on your mom! But I'm feeling very hopeful tonight! She really does look pretty good considering. Her vent settings are very low, they are basically supporting her breathing until her neuro status improves enough that she protects her airway. They turned her propofol off, and she turned her head when I asked her to. That's a new development! So very slowly, she is improving!

If you haven't "liked" Jax new Facebook, t you'll be missing out on this... I can't put a link on my phone, but his page is