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

First day of school ever!

We dropped Ben at Renaissance Academy this morning for his first day in Kindergarten.

He hasn't gone to preschool so he was a bit nervous because it's the first day he goes somewhere by himself (except for Primary, but that somehow doesn't seem to count...)

The people at Renaissance are great. His teacher (Mrs. Kerr) is very nice and she is aware of the things Ben needs. He also has an aid that talks sign language really well (Mrs. Snarr), and she'll be there most of the time. We are hoping he'll learn as he interacts with her, which will make us learn too. We are excited about that, as it'll help us communicate better.

On top of that he has a "special" teacher. She (Mrs. Pay) and her assistants (Mrs. Scott, Mrs. Kerr) help children with disabilities. He gets sign language classes, and some PT, OT and ST.

He is at school right now. We are going to pick him up at 11:00 AM. We'll keep you posted on how he does.

In other news, Ben is doing better all the time. He is able to eat the same lunch/dinner as the rest of the family, albeit in very small portions. We still need to supplement his nutrition with formula through his stomach button, but he's progressing really well in his eating of solids.

He still has problems swallowing water because it goes down too fast for his throat to react: he chokes and coughs. But with practice his epiglottis and vocal cords will learn to react faster, and then he'll be able to swallow water without choking.

He is crawling all over the house, and the other day he did something cool. He was downstairs with Melisa and Jared, but they came upstairs. I thought "I need to get Ben", but when I turned, he was upstairs too. He crawled upstairs all by himself. He was laying on the last step of the stairs, and wouldn't move because he was so tired! We have been practicing, but we didn't expect him to do it by his own so fast!

He can also make more sounds, but his speech is still very slow and blurred. We know what he says most of the time, but it's hard sometimes. Hopefully, between the sign language at school and his ST he'll get better.

We're going to pick Ben up now.

Jerry

Team Ben

Hello Family and Friends,

We are once again taking part in the HopeKids Wasatch Adventure to raise money for HOPEKIDS INC. I am going to be honest, and let you know that I have a very hard time asking for donations, especially in this economy. I know that none of us are in great shape, so I really wouldn't be doing this if I didn't think it was for a worthy cause. Please know that I won't think badly of anyone who isn't in the situation to donate. I completely understand! But if you are, we would be very grateful, and this is why.

HopeKids has been there for Ben and for us from the very beginning of Ben's illness. They've given us support, love, a social network of families that understand, and the opportunity to get together with these families while spending time with our own. We appreciate HopeKids so much, that whenever we meet a family who qualifies we ask, "Have you heard of HopeKids?" We are so grateful they are there, not just for us, but for other families who need them at those tough times in their lives.

But HopeKids can't do it without the support of people like you. Will you please consider making a donation to help keep this wonderful organization running? You can be assured that your money goes to bless the lives of children and families who really need it.

You can make a donation by visiting our FirstGiving page: http://www.firstgiving.com/benblanco

You can donate online with a credit card. All donations are secure and sent directly to HOPEKIDS INC by FirstGiving, who will email you a printable record of your donation.

Please send our page on to anyone who might like to donate!

We appreciate and love you all!

Jerry, Jana, and Ben Blanco

No news is good news

Hello, Everyone! It's been quite a while since I've updated this blog. But you all can take that as a very good sign - Ben is doing great! It has been three months since his last chemo treatment, and it's amazing how much better a person feels when they don't have a bunch of toxic chemicals running through their body! Ben hardly throws up at all anymore, he has more energy, smiles and laughs more, and is getting his hair back. He is eating better and better all the time. He doesn't eat nearly enough to support himself yet, but he has eaten more the last few weeks than the whole year and a half combined. His favorite "meal" is a couple of crackers with some cut up cheese. He loves it!

Ben is also doing great with his therapy. He continues to do his horse riding (which he loves, and is helping him a ton!), and is also doing some out patient physical therapy through the summer. Ben is learning to crawl again, and is doing pretty well at it. He is still trying to build his upper body strength, and unfortunately does a forehead plant into the floor every now and then, but he'll get there. He also needs to stop for pretty frequent rests, but we are very pleased with the progress he is making. And the most important thing is that he's pleased with it, as well.

He is also "talking" all the time now. He is doing better and better with his sign language, and has been adding some speech to it. He "talks" to me with his voice all throughout the day, and sometimes I can figure it out within context, sometimes I can't, but I love that he is so motivated to get it out. It's a very rare situation anymore when we can't figure out what he wants with one form of communication or another. What a relief that must be to him!

Ben had his three month MRI a couple of weeks ago and... it was clean! No sign of cancer regrowth! His hearing is the same, which was also good news because he hasn't lost anymore hearing, and his eyes continue to improve all the time.

Ben also had the chance to go to summer camp about a month ago (the above pic is from camp). It is a camp through PCMC specifically for cancer patients and their siblings. To say that Ben loved every second of it would be an understatement! He had the best time! He made crafts, sang songs, played games, saw therapy and rescue dogs, went swimming, etc. I haven't seem him that bright and happy in a long time (except when He met Winnie the Pooh and Gang). Every time he sees one the crafts he made or gets to wear his camp T-Shirt he gets that bright happy look on his face all over again. We are just so grateful for the wonderful volunteers who made it all possible for him. I don't know if they realize just what a significant difference they make in the lives of these special kids.

So, as you can see, things have only been going up, up, up for our sweet little Benjamin. We will continue to keep you posted from time to time. But remember, no news is very good news! :)

On the News

Our sweet Ben was on the news on Saturday night. You can read ABC 4 News blog about it here: http://www.abc4.com/news/local/story/Marti-Skold-Faces-of-Hope/wvvGQq44TkO1Fxs-eUX9bQ.cspx

Ben continues to do really well. His nausea is all but gone, and he works hard every day with his different therapies. We are running here and there, and when not doing that we are working at home with the different things the therapists want us to do. It is busy, but completely worth it because of all the progress that Ben has been making. He is getting stronger and stronger all the time. We still have a long way to go with his eating and speaking, but he is slowly improving in those areas as well.

Ben has also started going back to church and is loving it! He thinks Sacrament Meeting is pretty boring, but he loves primary and has a fabulous teacher. He always has a big smile on his face when we pick him up from his primary class each week.

So, only good things to report this time around. We hope this post finds all of you well and happy.

Much love,

Jerry, Jana, Ben, and the gang

The Happiest Day of Ben's Life

We recently returned from Ben's wish trip to Disney World meet Winnie the Pooh and all the friends of the Hundred Acre Wood. To say Ben had the time of his life would be an understatement! (And this is one little boy who deserved it!) We wish you could have been there to see it in person, but hopefully these pics will give you a glimpse of how wonderful it was. We are so grateful to Make-A-Wish of Utah, our sponsor, and Give Kids the World in Florida for everything they did to make our vacation the most wonderful week we have ever spent together as a family.