Accidental Email

Hi Everyone. Please ignore the email you all got last night about Ben's new walker. The system had a glitch and sent out a five year old post by mistake.

On the upside, Ben is doing super well. He's stronger then ever, and even tries to take off walking without his walker (as his chipped tooth will attest).

I hope you all are having a great summer!

Jana

Yearly update

Hello all,

we haven't updated this for a full year! Sorry about that. :(

Ben is doing great. He's now a first grader, although he spends most of his day in Kindergarten. He's learning some concepts well, but seriously struggles with others. No surprise there, but it's still hard to swallow some days.

He can walk and climb stairs, but his balance is very poor, and his response time is too long, which means that when he lets go from whatever he's holding on to, he starts falling, then he realizes he's falling, then he hits the floor, and then his brain tells his legs to compensate. In short, he can walk slowly, but he'll fall if he's not holding on to something.

Ben has been fitted with hearing aids. The radiation touched tangentially his inner ear, so he lost a little bit of hearing. He can still hear pretty well without the aids, but the sounds come across muffled. He can't hear the 's', 'p' and 'th' sounds at all, so the hearing aids help him in that range.

The first evening after wearing them the whole day, I started his music (Mormon Tabernacle Choir every night) and put him in bed. When I then took the aids off, he started signalling he wanted them on again to hear the MTC better. Of course, I had to give in...

His speech is slurred and slow, but getting better. He can now form words, and most of them are intelligible, at least for us. His talk is very slow, but if you have the patience, he can communicate with you and let you know what he wants. His brain processing is also slow, so when you ask him a question, you need to wait for him patiently to process and respond.

He hasn't had any food or drink through his stomach button for some 2 or 3 months (or more?) now, so we have a surgeon's appointment next Friday. He'll probably become Buttonless Ben in a couple of weeks! That'll be very good, especially for when I carry him on my shoulder coming downstairs (a favorite game of ours). I won't pull his button off! (He has pulled is button off his "panza" several times. At first we were all paranoid about it. By now, we just wash it, moisture it and push it back in. No biggy for him or us...)

He's a very good older brother to Jared, and Jared helps him when he can. They're developing a beautiful relationship, except when they fight over some toy. It's funny to see them roll on the floor in a fight: Ben's attack is to grab-n-hug Jared as hard as he can, thus depriving Jared of his mobility. Jared's defense is, then,  to get out of reach and hit from a distance. When Jared is out of reach, he wins. When Ben gets him, it's a bear hug.  :D

Ben has a very sweet and determined soul. He copes with his limitations as well as he can, with a smile most of the time. He's learning to understand the world around him and mostly accepts it, with peace but not with resignation.

Of course, he'd like to do things like other kids, but most of the time he just does what he can and is happy achieving those little-for-others-but-big-for-him goals. For example, when other kids run, he gets a sense of pride and achievement in being able to climb the playground by himself.

I believe he will continue to improve not because his brain kindly allows him to, but because he wants to and his will is strong enough to beat his brain into submission. :)

We are blessed to have him with us and have the opportunity to care for him.

We'll try to keep this blog going, but as life stabilizes we'll probably incur in other year-long silences...

Thank you all for your support. Keep the prayers coming.

Love you all,
Gerardo

Ben on TV!

Hey, Everyone! Our Sweet Little Ben was on TV yesterday! For those of you who missed it, here is the link:

http://studio5.ksl.com/index.php?nid=71&sid=14134261&autostart=y&recommend=true

(Note: you may need to copy and paste it into your browser for it to work)

Ben Can Drink Root Beer!

It's been almost exactly two years since that fateful January day in 2009. But this January day in 2011 brought nothing but great news. Ben had a swallow study at the hospital this morning, and for the first time he has been cleared to eat and drink anything he wants, including water and root beer! He has been working hard on this, drinking from a syringe to practice, and praying every night that Heavenly Father would help him drink water again, and remembering to thank Him for every little success. Well, that work has payed off, and those prayers have been answered. Ben gets root beer for lunch today, and we are going to have a root beer float party this weekend to celebrate.

So, this January 18th, instead of having our boy's life hanging in the balance, we'll be drinking root beer, and we'll be grateful for every hard won swallow!

Good News

Ben went in for his MRI today marking six months off of treatment, and we are very happy to report that it shows no signs of cancer regrowth. Very good news! Our little trouper is doing great. He still gets quite tired, and struggles to get that food down without having it come back up on him (literally), but otherwise he is really doing well. He is enjoying school, working hard at his therapies, eating more bit by bit, and getting stronger every day. He is starting to talk a bit more intelligibly (at least to us), and is learning more ASL that is quickly becoming second nature to him. He gets up and down the couch by himself, and is crawling all over the house. Physically he is getting more mobile all the time. And of course, those smiles and hugs keep coming every day! We are very proud of our Ben and everything he has accomplished. He's our little hero!

My Really, Very, Extremely Bad Day

Hi Everyone,

I had "one of those days" last week, and I wanted to share it with you all to help you feel better about your lives. :) Plus, it was just too incredible not to share. So, enjoy! :)

I was woken up at 6 am with Ben's food beeping because it had run out early. I went in to help him, and was hoping to fall back to sleep, but then he let me know that he had poo and needed help. I thought he meant he needed me to take him to go poo, but no, the poo was already there and it wasn't just poo, it was diarrhea. So, I flushed his food with water and unhooked it from his stomach so I could change him, and he got very upset that I didn't let him push the water in with the syringe. Well, Ben can get pretty upset when he is frustrated about things, and he was cranky because he had been woken up by the food alarm to, so he started thrashing and crying, etc, all with his diaper half off and exposed diarrhea everywhere. Well, you can imagine what happened. Ben is a big, strong boy, so it took all of my strength to hold him still and clean him off enough to get him off the bed so I could clean his now pooey bed. I asked Ben if he had anymore poo that needed to come out. "No." Okay, so I pulled the sheet off to put it through a rinse cycle and then came back to take care of Ben. There was just one problem, Ben had more diarrhea while I was gone - on the carpet. I told him to hold still so it wouldn't get anywhere else, but he was still mad about the water syringe, so he started moving over to his food pole to show me that I had done it without him. I tried to stop him, because he was spreading the poo, but the more I tried to stop him, the more upset he got, and the more poo went on him and the carpet. In total frustration I called Jerry out of bed to come take Ben away to the bathtub so I could get the carpet clean.

With Ben with Jerry I left to go get the carpet cleaner, and when I got back to Ben's room, there was George (our dog), eating the poo, thereby totally grossing me out, not to mention getting it in his hair on his face. I took him to the bathroom and tried to clean his face the best I could with baby wipes and then put him outside. Oh, it was so disgusting. I mean, really?

So, Jerry thankfully got Ben off to school while I kept tackling the carpet. I cleaned and cleaned, and it looked like most of the mess wass coming up. I was trying to hurry because I needed to take the van in to get the safety and emissions testing done on it, and I wanted to be there as soon as I could to be first in line so I could get out in time to get a shower and then drive to Lehi to pick up Ben from school. Well, after I cleaned the carpet for awhile I noticed that the carpet cleaner wasn't soaking up the cleaning water anymore. I realized that I hadn't emptied the dirty water tank, so I took it out, and without thinking I turned it upside down (don't ask - long story), forgetting that it didn't have a closed top. Yes, a full container of dirty brown poo water poured all down my bare legs and all over the just cleaned carpet.

I almost calmly went and cleaned myself up, then went back to the carpet, again. This time it almost seemed worse to me, because it was in water form that quickly and easily seeped deep into the carpet. I'm still pretty grossed out by it, but what do you do? I cleaned it up the best I could, and was pretty much done when three year Jared came in with a huge smile on his face and said, "Mommy! I'm helping you!" Oh no. He had gotten the air freshener I had used in Ben's room and had thickly sprayed it on the wood floor in the entry and kitchen and was "mopping" it up with his toy mop. Big smile from little boy. "When Daddy gets home I'm going to tell him I was helping you clean!"

All of this, and it's only 8:15 a.m.

With no time left to clean any more messes I loaded Jared up in the van to take it in for the safety and emissions (on the last day of the month). I had to go to a certain place because we had purchased it already online to get a deal. Well, I get there and find out that their system is down, and they won't be able to do my inspection that day. Yeah, figures. So, I have to take it back in on Saturday, early. I get up Saturday morning and am there bright and early at opening time. One of the workers shows up on time, but for some reason he hasn't been given a key to the building, so we have to wait for another worker to come. So we wait, and wait, and wait. Finally, half and hour later, the other worker shows up. They do the safety and emissions on my van, and then say that the sticker is already on it. Huh? Plus, it's a 2009 and didn't need to be done this year. Say what? And then it dawns on me. All of that, and it wasn't even the van that needed to be done, it was Jerry's car.

Back from school

He did great!

He was all smiles when he came out. Mrs. Kerr said he did great and Mrs. Snarr told us they communicated really well. By asking questions she was able to gather that Ben has a sister and a brother. Considering that was the first time she really interacted with him, that's a lot!

Ben's teachers have been incredibly accommodating and it's easy to see they love their job and the kids. They are truly a blessing in Ben's life.

He came back from school a bit tired, but he ate his lunch and is now going down for a nap. He loved school.

So, first day of school a complete success!

Jerry