Tag Archives: daddy

Daddy in Norway

A couple of months ago, Brian came home and told me that the business associate that was visiting from Oslo had surprised him with an offer he didn’t think he could accept. Because the internet is a global enterprise, you shouldn’t be surprised (though you probably haven’t thought of it) to learn that web companies sometimes do business with other companies overseas. This particular one was holding a conference near their headquarters in Oslo, Norway. Brian was invited.

You may not know about me, because I live so deeply in the special needs mom world, that I was a student of linguistics in college. That I love other cultures. That I taught English as a Second Language. That until we became parents that we were travelling as often as occasion allowed. No. If my husband was invited to visit a new place in Europe, I wasn’t going to say no.

I did tell him that I couldn’t promise that I wouldn’t be jealous and/or that I wouldn’t have a hard time holding it together while he was away. But I did promise I would try.

So, last Tuesday as I was dealing with a fire at home, Brian hopped on a plane to Norway, with a connection in Amsterdam. He spent the first part of his week in the conference being shmoozed by the hosting company, with a little bit of touring Oslo in the meantime. Then, he headed off with the friend who’d invited him to a cabin in the Norwegian forest where he biked, boated, and even walked barefoot through a forest so moss-covered that it was as if the forest was carpeted.

I make it a policy to not stay home and sulk if I can help it. A great deal of time and energy was spent working on taking care of our little house fire.

Thank goodness reinforcements also came on time to help with that. With summer starting, the neighbor girl who is doing respite for me started. She worked 3 days last week and it was life-saving. As an added bonus, the neighbor’s 10 year old called and came over a couple of times during the week to play with Patrick. He adores her and it really helps me. Then there was the amazing friend of mine who came to my house after getting her own boys up and ready for the day to help me get Patrick and myself up and ready by 8 a.m. so that we were keeping in habit between Nebraska and the start of summer school. I swear I only showered that week because of her help.

Two other friends worked together to bring in a meal Tuesday night and that, combined with leftovers of a frozen lasagna and spaghetti I’d made Sunday, made up most of what Patrick and I ate that week. I think the most complicated other cooking I did was some vegan macaroni and cheese from a box.

I’ve become aware of a tendency between Patrick and myself to build upon each other’s negativity. If I am in a bad mood and criticize him, then he becomes more defiant and naughty, and I in turn get more strict. So I decided that, as we kicked of summer, we needed a way to encourage more positive speak. I’d read an idea of putting warm fuzzies in a jar when children are caught being good. But I didn’t have any pom poms. What I did have was a bag of rainbow colored foam popsicle sticks. Cut in half, they created a very durable, easy to handle “ticket”. Sunday night, while I was waiting for Brian to see why the internet was out, I slapped some labels on an old gelato jar and a formula can. One for me, one for him. And now, I carry a pocket full of tickets. When I catch Patrick doing something especially kind of helpful, when he obeys when he doesn’t want to, when he gets control of his temper when he is feeling out of control, etc. he gets a ticket. They easily move from my pocket to his. And once or twice a day we empty his pocket into the jar. When the jar gets full, he earns a reward. At first, I was offering kids meals. Now, we’ve opened that up to a dollar at the dollar store, too, since we are filling the jar more than once a week.

Anyway – this has helped the mood in our house. It also gave us a great excuse for an outing.

Wednesday is “library day” in our house. So, once the cable was fixed Wednesday, with Patrick’s jar full, I decided we had earned an outing. I checked out museum passes for the month of June. I thought we’d start with what had been his least favorite museum before, the Leonardo. And then we could go over and visit the city library.

Well, it turns out that the exhibits at the Leonardo have changed a bit and Patrick has grown up a lot. He is a little bit of an engineer at heart, taking after his father and grandfathers in wanting to know how things work. And he couldn’t get enough of the hands-on engineering exhibits at the Leonardo. He wasn’t as much in love with the arts side of things. But, when I thought he’d seen it all and suggested we go, he announced, “No! I love to be here!” And we went and did them all again. We arrived at 3:30. We stayed till 5. That is a long time at one thing for Patrick.

When we left the museum, I considered moving my car, since it was in 2 hour parking.. but instead let Patrick lead up up the stairs on the outside of the library. You can climb to the roof of the Salt Lake City Library by a long circular set of stairs on the outside. Of course, Patrick did. And then, after playing on the roof, we rode downstairs in the glass-walled elevators to the children’s section. Patrick was enchanted.

The children’s section has a hole fort-like reading corner. We picked out books and went to read. Then Patrick needed a diaper and I remembered my car, now 10 minutes past time to move it. We went outside with the intention of moving the car.. but getting outside reminded us both we were hungry and Patrick voted to go to dinner.

He’d chosen Arby’s for dinner and a downtown location felt just fancy enough. I knew we needed to do some grocery shopping, too, and while we were eating I remembered that the downtown Smith’s location as a fairly large allergy section that I’d never explored. So we went grocery shopping. Patrick was beat! But they had goldfish crackers on sale. (We’re using them to give him small amounts of dairy exposure to try to help reduce that allergy… plus he loves them.) And, as I went looking for vegan mayo, I discovered a new product called “Just Ranch” that happened to be on clearance. It was an entirely vegan ranch dressing. And next to it was “Just Coleslaw Dressing,” though they were out of “Just Mayo.” We picked up a few, headed to the car, and made it home, snacking on goldfish while we drove, just on time to go to get by 8.

Friday, we tried to meet some support group friends at the park. I’d picked an adaptive playground I love because I find them easier not just for wheelchairs, but also for kiddos with TPN or tube feeds in tow. Alas, we ended up there alone. Short gut means hectic schedules and I often end up planning get togethers that only I attend. But we stayed to play, anyway. We’d made up some chicken salad with the Just Coleslaw dressing and Patrick devoured it. (Yay!) Being an adaptive playground means it was full of special needs kids and their special moms. So when the phone rang and it was Patrick’s summer school teacher calling to learn about him before the next week, some sweet special moms just took him in with their own so I could talk.

Saturday, we decided to try out another museum pass. This time to the Museum of Natural History. I’d opted to spend the morning working in the yard before it got too hot. And it was crowded in the afternoon, which made it harder for Patrick to focus. But we still spent a couple of happy hours and I think he got a chance to explore and play with everything that suits his abilities.

Sunday, we attempted a little more church than usual. Patrick did really well in Sacrament meeting. He set up his toys on the floor and happily entertained himself past our goal of the first talk. It took effort me to stick to my resolution to not overload him and leave once we’d met the goal.

We went home, ate lunch, and talked to Daddy.

That afternoon, I took Patrick back for Primary. His first attempt since transplant. He was tired by then. And overwhelmed by the new place. He said the opening prayer, except he didn’t. They’d whisper ideas of things he might say in his ear, and he’s just say “no.” But he got to talk in the microphone, which made him happy.

Then, he ran wild around the room for the remainder of singing time. (Different to go observe instead of leading.) And then I took him home.

I’ll write more about Monday. Maybe tomorrow. The short version is that he started school, I started working with a district representative to talk about his 1st grade placement, and then we went and brought Daddy home from the airport. That night, I cooked my first real (not restaurant, frozen, boxes or reheated) meal in 2 weeks. And we were all ready to crash by 9.

So why did the blog change?

 

Thought I'd spice up this post with pictures from our visit to Dream Night at Hogle Zoo, courtesy of HopeKids. Patrick asked me to get out my camera in the seal-viewing area and struck this pose.

Thought I’d spice up this post with pictures from our visit to Dream Night at Hogle Zoo, courtesy of HopeKids. Patrick asked me to get out my camera in the seal-viewing area and struck this pose.

Thank you so much for your patience with the transition over to the new blog page. I see that some of you have already made it along with e-mail subscriptions and all. I added a new subscription for anyone who had been subscribed to cotaforpatrickh.com. You should have gotten an e-mail from WordPress prompting you to confirm. If you got it right, then you got a notification of this post in your e-mail.

Anyway, I’ve been asked a few times a question that I want to clarify. Some people are wondering if the switch means that we are no longer fundraising with COTA.

The answer is, OF COURSE we are still working with COTA. They have been a wonderful support to us. We’ve raised $21,921.81 so far which is AMAZING! And they have still been an amazing resource for us. I can’t even put into words how kind and concerned they are every time I talk to them.

So why the change?

A couple of weeks ago, a COTA representative called me because the website domain was up for renewal. It has been 4 years since we started fundraising. Can you believe that? 4 YEARS!

4 years ago, COTA asked me to move our blog onto their web platform and servers so that they could help us make sure that our online fundraising presence followed all of the rules and regulations required by the 501(c)3 status. 4 years ago, we had a committee planning monthly fundraising events. We were new and required a lot of supervision.

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But now, well, we’ve been at this for some time. We’re a little more seasoned. We don’t need someone to screen all the posts to make sure we got the verbiage for fundraising right. Our campaign has gotten smaller and a little less busy.

And so, we can follow a little bit more lenient set of rules. My personal blog no longer is required to be hosted on their servers.

If you remember, back in the day when I had time for personal hobbies, I was dabbling quite a bit in graphic and web design. I have been itching for years to get control of my own blog design back. To get features like tagging and categories and an automatic Facebook and Twitter feed. (And a smoother CMS to work with so that posting blogs would feel like less of a chore and I’d do it more often.) I am thrilled to have the option to post pictures and quick blog entries from an app in my phone. I think I’ll do a better job sharing with you more often. And, as icing on the cake, I could save COTA the cost of maintaining my domain and hosting so that that annual fee could go to helping another family with their transplant expenses.

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So, long story short, I jumped at the chance. I’ve been backing up this blog for the past couple of years, but I decided to take advantage of having to sit up half the night waiting to give antibiotic doses and get the rest of the blog moved. Pulled it off in just a matter of days.

And here we are.

We have not given up on COTA and they have not given up on us. You can still make donations through the links on the top right-hand side of the page. We are still collecting used cell phones and ink and toner cartridges and other assorted electronic devices. And we are still open to putting together big fundraising events, if you have any great ideas. In fact, I’m thinking maybe it’s time for a new batch of “Got Guts?” shirts, since we’ve got a new domain. (That project may take me days, or weeks, or months.. but it’s in my little head.)

And I am SO VERY excited to be able to continue to share the story of our journey with you at this, our new blogging home.

If you haven’t subscribed already, there’s a box in the sidebar on the right.

Or you can follow the twitter feed at https://twitter.com/HoopesPatrick

Or the facebook page at https://www.facebook.com/PatricksGotGuts

The big slide

I went online to look for pictures from the most recent HopeKids party and found these from the HopeKids birthday party that we attended in November. I just had to share.

This year, the party was at Classic Fun Center in Sandy. This place has two skating rinks, an arcade, ball pits, and best of all, inflatables. I wasn’t sure that Patrick was big enough for inflatables, and was sure his tubes would get in the way. Daddy saw otherwise.

Howie knows Patrick loves slides and so he found one he could carry Patrick up to slide down.

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He’d tuck Patrick under his arm, and up they’d go.  Up about 15-20 feet… and at least that many little foam steps.

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They’d stop at the top to get backpack and tubes situated. This only helped build the anticipation.

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And then down they’d come.

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Both of them thought this was pretty darn fun.

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And so, they’d go again.

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They did it again and again until Daddy was so tired from carrying Patrick and his equivalent weight backpack back up the slide that he couldn’t do it anymore. So they sat and had a rest.

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We played in one of the calmer inflatables for a bit. Patrick was really scared and frustrated trying to walk until Daddy started bouncing so we’d bounce. That’s how we finally got this smile.

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And then, well rested, they went down the slide again. Is it any wonder why Patrick loves his Daddy?

(p.s. THANK YOU HopeKids for a very fun birthday party.)

Holiday fun

We’ve been doing our best to make the most of the holiday season. How fun it is to have a 2-year-old this year! Christmas is so magical for a child that age… and it’s the littest things that make the most difference. For example, Patrick’s been glued to the Christmas lights we hung on our house since the night we put them up. Now, given, we have some very cool lights this year – LED color changing icicles… He watches them and smiles whenever he sees them.

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Hiding ornaments behind the toybox

He loves the tree, too.. especially the ornaments.. and I’m finding that my investment in Ikea’s unbreakable ornaments has been a blessing because then he can take them off and carry them around without worrying me, and then we put new hooks on and hang them back up. (One disclaimer – they do break if you push a full toybox into them repeatedly.)

Of course, we took him to the Festival of Trees again this year. Last year, this really was a test of his patience. But this year, he loved the trees – especially the tree covered in Elmo dolls, and any tree with cars or trains under it.  He wasn’t so happy that we made him stay in his stroller so we couldn’t play with the toys in the displays and did his best to sweet talk someone else into taking him out.

We did our best to see Santa there, too… but we arrived as Santa went on break and by the time he’d made it through the crowd (giving hugs and candy canes along the way) we’d run out of time.

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Waiting to (NOT) see Santa

After weeks of snow, we had some unseasonably nice weather last week. Monday night I realized that it was probably the warmest evening we’d get all year. So, I called Brian at work and we decided to seize the opportunity to see some Christmas lights.

I made some taco soup and we picnicked in Daddy’s cubicle. For the record, soup is Patrick’s current favorite food. We stick to clear, mild broths. I’m not sure it’s the best thing for his tummy, but it he loves it and there are worse things for him, and so I let him have it from time to time. He makes a little sipping sound to ask for it and will eat until there isn’t a drop left.

After eating, we bundled up. I made a little tube warmer for Patrick because if the fluid in the IV’s gets cold on the way into his body, Patrick gets chilled really quickly. It takes about 5 minutes to do the 10 feet of velcro, but it seems to work. Then we added coat and hat and gloves. Patrick was more than happy to stay bundled and warm.

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Bundled and ready to go

We’ve got a zoo pass, so Patrick is familiar with the zoo… but looked a bit confused when we arrived there after dark.

And then, when we walked in and saw the lights, his eyes got big and he grinned from ear to ear!

 

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Posing with some of the lights (the little grey thing by his back is end of the tube warmer)

They had a really impressive display. Lots of lights everywhere, including full habitat scenes. And, where possible, we were able to walk in and see some real animals… mostly fast asleep. The leopard was sleeping sprawled in plain sight, but woke up to give us all a nasty look for interrupting his rest. And did you know that monkeys sleep all in a pile in the top of a tree?

Afterwards, we stopped in the gift shop to pick and ornament for our tree and let Patrick pick out a stuffed animal, too, that he’ll get on Christmas.

The next night, we finally got to see Santa. HopeKids had a big Christmas party for the kids. So big, in fact, that it took 3 sessions to accomodate everyone and there was still a huge crowd.

Meeting Santa- First Impressions

Meeting Santa- First Impressions

If I haven’t explained it before, HopeKids is an organization that plans free activities for kids with terminal illnesses. The idea is that if you have something to look forward to, then you have something to hope for and something to live for.

Well, we can’t really explain plans to Patrick. However, he’s beginning to understand one thing… the HopeKids shirt means fun is coming. I went to get him ready to go and pulled out two choices – a Christmas shirt because I knew photos would be taken… or the HopeKids shirt. Patrick caught one glimpse of the shirt and started to beg to wear it. When I tried just putting the Christmas shirt on him, he melted into tears.

 

This is what happens when mom says "No, stay there a little bit longer"

This is what happens when mom says “No, stay there a little bit longer”

Finally, I conceded and let him wear both. Which made him happy enough until that night when it was time for PJ’s and he fell apart again because I made him take it off… he carried it with him the rest of the night.

Why so much fuss about a shirt? Because Patrick knows that if we get out our HopeKids shirts… especially if we all wear them… that something really fun is about to happen.

This time, it came in the form of the biggest and most kid centered Christmas party I’ve ever seen. There were photographers, of course… and Christmas presents. (They let the kids pick their own… Patrick picked a fire truck). There was a magician and a juggler and pizza and so very, very many crafts.

Patrick looks pretty unhappy to see Santa in the picture we took. I think that’s cuz we put him on Santa’s lap and then made him stay there while we took pictures. As the night wore on, Santa came back a few times and each time, Patrick was less nervous. By the end, Santa could come get a high 5 or a pound on the fist and even a little grin.

Amazingly, Patrick even enjoyed the show. Usually he’s pretty unhappy when crowds laugh or applaud, but this time, he clapped and pretended to laugh right with everyone else, though I’m not sure that he really could see what we were all laughing at.

There’s still more Christmas fun to be had. We are almost caught up with shopping and half done wrapping presents. We’ve baked our goodies and visited the neighbors. Tomorrow is Patrick’s last appointment for the rest of the month… We had a busy couple of weeks trying to fit everyone in before offices closed for the holidays. But I’m hoping now it will be worth it as we have nothing left to do but play and enjoy the family and the holiday.

Thanksgiving

What’s the best thing about Thanksgiving dinner? Not the food, according to Patrick, who really didn’t even want to eat much of anything at either of the family get-togethers we went to. For Patrick, the best part of Thanksgiving dinner was that it put his family all together between the hours of 2 & 4 p.m. This is when Patrick has his break from his TPN, which means that on two consecutive days, Patrick got to run around tube free and play with his very favorite people.

You couldn’t ask for a better holiday treat.

I’ll admit, I enjoyed it, too. It’s different to go to an event and be able to let Patrick play without having to follow behind him watching his tubes.

And the best thing about the entire holiday weekend? Well, according to Patrick, it was having Daddy home for so many days in a row. He didn’t want to let him out of his sight. Friday morning we went to do a little bit of Christmas shopping and when Brian walked away from the cart, Patrick was absolutely heartbroken.

Daddy is, hands down, Patrick’s favorite person in the entire world. And who am I to argue? The two of them are my two favorite people, too.

Spending the holiday with the two of them, free from the hospital, healthy and happy is truely something to be thankful for.

Little Heroes

You’ve gotta see this story!

http://www.abc4.com/content/news/top_stories/story/Donor-transplant-brings-two-Utah-families-together/_A0j2PcCfEOkr4N_XWaMmw.cspx.

As you know, Patrick attends a weekly play and music group for children with a variety of health problems. One of my heroes from this group is a little girl named London, or as those who know her call her, Lulu.

Lulu had a liver transplant a year ago. When she first came to our play group, her mom immediately recognized Patrick’s TPN, having been on it herself when she was at her sickest. Lulu is one of the most vibrant, outgoing little girls that I’ve ever met. She and Patrick seemed to have an instant draw to each other.

One other thing they have in common is that Lulu’s family, like ours, is trying to raise awareness of the need for organ donors. Both of us have been active in working with Yes Utah, our local organ donation awareness organization, and in sharing our stories to help encourage people to sign up as donors.

Last night, Lulu’s story was featured on the evening news. A transcript of the story has been published here. (Just in case you didn’t click on the link at the top of this page.)

Please read it, and share it. And if you aren’t already registered, please consider registering as an organ donor.. and make sure your family knows of your desire to be an organ donor.

On another note, we never got a call yesterday inviting us to come up to X-ray, so that test will probably happen sometime next week. I’ll admit, I didn’t mind much. Patrick and I were both burned out from the previous two days and it was a rare treat to get to spend the day at home. Chris, his developmental specialist came to play. Patrick adores this man and LOVES their visits. Then his cousins stopped by for a short play time. And then, after dinner, we curled up on the beanbag movie and watched Cars.

I suppose that that’s only a partially true statement. Patrick was all over the room, but he returned regularly to cuddle with me or to tickle or to blow zrbbts on my tummy. This is the first time Patrick’s seen the movie Cars and, as I had predicted, he loved it. He’d return often to just sit with me and watch a scene or two. He got especially excited whenever Mater appeared on the screen.

And then, after Patrick was in bed, Brian finally made it home from Chicago. There is so much comfort just in having him here. And it was so nice to have extra hands when Patrick pulled his usual trick of picking his central line dressing off during the night so we had to change it first thing in the morning.

Today I’m proudly sporting a new Giordano’s t-shirt that Brian brought back for me. In case you don’t know, Giordano’s is the best Chicago-style pizza chain on the planet. And if I can’t have the food (Howie’s trying not to rub in the fact that he had Chicago-style pizza not just once, but twice this week), at least I can wear the schwag.

Trick or Treat – but hold the treat

Because Halloween fell on Sunday this year, it was celebrated on early in Utah. This gave us the rare opportunity to celebrate Halloween and Patrick’s birthday separately. And just in time, too… as Patrick is just old enough to enjoy the ideas of costumes, walking, and collecting small things in a little bag. A perfect year to introduce him to trick-or-treating without the woes of having to make up for the fact that he’s not allowed to eat candy.

We started our celebrations on Friday. Brian’s office invited the children of employees to come in to the office and trick-or-treat desk to desk. So we got Patrick all dressed up and went to spend the morning at daddy’s work.

Patrick was a lion this year. We lucked out on the costume. We ordered it online… early… to allow time for me to make modifications to allow for his tubes and his brace. But no adjustments were necessary. The snaps were all in just the right places. And Patrick loved the hood (still asks to put it on to play) and the little mittens. He’d ask to put his hands in the gloves, then wave them around excitedly.


Our very talented friend Jillian made a little trick-or-treat bag that Patrick could carry on his arm to collect treats in. I had a larger trick or treat bucket to move things to when the bag got too full or too distracting.

Trick or treating in the office was fun. We went from floor to floor and Patrick got to flirt with the women, show off for the men, and collect lots of little candies in his bag. It was funny that, although he’s never tried candy in his life, he seemed to prefer the M&M’s. Brian kept trying to sway him to different treats, since mommy and daddy would be eating them, not Patrick… but Patrick was persistent in choosing the M&M’s whereever they were offered.

Saturday morning was still a flurry of getting ready for Patrick’s birthday party on Sunday.. but by afternoon we were ready to go trick-or-treating again.

We started with grandparents. Patrick enjoyed showing off his costume and playing with the little toys that each had gotten for him in lieu of candy. Then, we hurried on our way hoping to make it home before the day’s rain made it too cold to want to go out.
We made it home after the worst of the storm and ate dinner, but it was still sprinkling when we loaded him into the brand new wagon we’d gotten as a birthday present. The ward had scheduled a trunk or treat, but chickened out in the rain. So we went ahead with our original plan to just visit a few close friends.

At first, Patrick was happy enough and quite adorable. He’d wander up with me to the door and try to go in, then act confused when we put candy in his bag and walked away.

After a couple of houses, though, this wasn’t much fun anymore either. He didn’t get why we were doing this and his foot seemed to hurt, to boot. He started to cry whenever we took him out of the wagon, so we went to just a couple more houses and then came back home.

He was content to spend the rest of the evening moving his treats from his trick or treat bag to the bucket and back. He got sleepy and went to bed around 8, thoroughly worn out.

All in all, it was a pretty successful first attempt at trick-or-treat for Halloween.