12/16/18 - Barf Chicken

Today was really nice. Most times, on Sundays, we just relax and enjoy the day. Football will be on, the house will smell like something yummy in the oven and I will gets lots of snuggles. Grandpa even stopped to see me and visit today. He rode his four wheeler over. When I get bigger, I can go on it for a ride too. I’m excited to get outside more when the weather warms up. Mom said that won’t be for a while yet, but I still think about it. Anyhow, I sat in my high chair for all my meals today. At lunch time, though, per my Grandmas recommendation, Mom let me try some new foods. The peas were normal, I’d had those before, but the blended Gerber jar of chicken…oh no! Absolutely no! I tasted it and shook my head so it would fall out of my mouth. Ha! I didn’t like it and Mom wasn’t disappointed because she about gagged with the smell. She and Dad and Grandpa (we made him smell it when he stopped) all said it smelled worse than wet cat food. I’m fact, wet cat food smells better! Dad tried it and it wasn’t bad he said, but Mom promised not to make me try that again and that she will mash some homemade meats for me to eat safely. Barf chicken is not for me! Ick! I got some more peas and that cleansed my mouth out. I was pretty happy all day, besides that. I posed for pictures, because I love having my picture taken. Here are some, below. Good night. -Heath

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12/15/18 - Santa Man

I used my high chair for the first time today. I’d been just eating on moms lap, in my Bumbo or in my chair, but now that I’m a little bigger and more comfortable sitting, we decided to bust it out. I sat for a long time and ate Pears Mom helped me with. I was watching Dad making strips for his jerky. It was interesting to watch and the spices were so smelly! Anyways, I ate good and enjoyed the chair time more than I expected. It will make eating much more comfy, I think.

We did a lot today! The biggest thing was this, though…I met Santa! We went to a place called Cabelas to finepd him. Mom said Santa is from the North Pole, but Dad said Santa hangs out at Cabelas a lot because that’s where the kool fishing, hunting and camping stuff is. Sure, enough, he was there! We walked up and Dad set me up with him (after we drilled him on whether he or his family had been sick lately…they hadn’t). I didn’t mind sitting with the Santa man. He was in a big fuzzy suit that I liked and he had a fluffy beard like my Dad does. I was going to smile for a picture until I looked over my shoulder and saw an elf stuck in the snow and a Reindeer staring at me. What a weird experience? Mom got her pictures and was happy, so we said thank you to the Santa man and went about our day… -Heath

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12/14/18 - Beautiful, Busy, Bath, Bed

Mom got me all snuggling warm in fuzzy pants and an oversized sweatshirt, then she took me for a tour outside today. It was great! It is still winter and chilly, but it was a little warmer today (like in the high thirty’s) so we thought it was a perfect day to go out. The sun was shining on the snow and the air felt good when I breathed it in. That might sound funny, but I haven’t gotten outside time, too much just yet, so I really love fresh outside air. We walked around the yard and I looked at everything. She held me up so I could hold my head up and look back over her shoulder as we walked. I saw the horses and two of them were being silly and playing. It was very interesting to watch. They are so big! Mom said they aren’t scary, though. Then, we stopped to visit with my doggies who were ourptaide for the day to see everything happening in the yard. Doggies like to watch and protect our home, that’s what Grandpa told me the other day. They also like to watch for squirrels. I love seeing my doggies. They always want to lick me! No kisses from them yet. I have to get stronger and bigger first. We went out to the big garage to see what Dad was up to, too. He seemed busy, though, so we kept our tour going. It’s so fun to see new things. I don’t know what a lot of stuff is yet, you know? When we were done, we went inside so I didn’t get cold. I mostly played and napped today before we had to go to an appointment in the city for a shot I needed to get. We drove to Madison, WI and it takes about an hour to get there, so I had a nice nap. I don’t usually nap too long in the car, but when we go to Madison or Milwaukee for my appointments, it’s one or two hours one way, so I try too snooze. I was pretty tired tonight when we got home. Mommy gave me a quick bath in the tub and then I got dressed and am going to bed. Nighty nite! -Heath

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12/13/18 - Special Time

I hung out all morning with my Grandma. Mommy usually takes me with her to work, but when it’s really busy, sometimes my Grandma or Grandpa will come to my house or I’ll go to theirs, and we hang out. It’s some of my most favorite time. We usually play with my toys and talk. Grandma always goes thru each toy, giving me one at a time, letting me decide on my favorite. She thinks it’s interesting. Lately, my favorite toy has been my Hedgehog. He’s squishy and hard and makes sounds when I shake him. Sometimes, I grab him with both hands and try to eat him, but he is to big to fit in my mouth. Grandma and Grandpa brought me over a new book with Christmas stories in it, too! Mom and I have been reading the stories. Mom says it’s good to do Christmas stuff this time of year and the Christmas stories are part of tradition. I don’t have a favorite one yet, but I do love reading books. Especially, because I can look at the pictures. -Heath

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12/12/18 - Just Us

Today was my the day my Mommy was born, what she says was a long time ago. I haven’t had a birthday yet, but she’s had a bunch. She told me today was the most special Birthday she’s every had because she has me. It made me smile. We had a really good day together. It wasn’t too much of a different routine, for a weekday, but it was a special day for just us. We played, snuggled and she smooched my cheek without any other distractions; no radio, tv, phone or people. Just us. It was the perfect birthday present, she said. I even wore my “Mommy’s Cool Dude” shirt…he, he, he! Tomorrow, my Grandma is coming over to my house for a while and I’m not going to work with Mom. I’m excited and just curled up in bed to make sure I’m well rested so we can play in the morning. Hope you guys had a nice day, too! Good Night. -Heath

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12/11/18 - Mailing Address

You have all become my family over the last nearly ten months of my life and I will forever be thankful for everything you have done for me and for my family. Thank you! When I was hospitalized you all sent me so many sweet letters; for me to read when I get older and my Mom/Dad would read your cards and messages to me daily. You also sent some really special and meaningful things to me that I will forever cherish. Now that we are home, we do try to keep some stuff private, though, and you all asked for a new way to send me letters and things…so, we opened a PO Box for just us. For my “support family” and I :)

Here is my new mailing address:

Heath Cornford

PO Box 153

Lyndon Station, WI 53944

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12/11/18 - Butt Lift N' Roll and Yell

Mom has deemed it the ol’ “butt lift n’ roll”…that is the move I do to get myself around. Yesterday, I told you about how I’m getting more mobile and today Mom was surprised when she came to peek on me and I was half way across the living room! I laid there, kind of shy because she caught me, looking up at her with the biggest gummy smile. I’d never moved that far before and I think we were both surprised. I’ve also been quite the chatter-box today! Mom keeps getting startled that I’m crying or something is the matter, but when she checks on me, I’m just talking to myself and smiling. I make some really strange sounds, I’m told. My sounds are “kaaah”, “aah”, sucking my tongue, growls and grounds, throat sounds and screaming excitedly. No Momma or Dadda yet, but we will be working on those soon, I’m sure. I’m starting to get good at this! I’m feeling more “my age” lately. I’m catching up, quickly, on everything I’ve missed thru my journey. It’s very exciting for me and for my family. Also, I throw stuff now…so that’s fun. -Heath

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12/10/18 - Mobility

I spent most of the morning sunbathing on the floor in the living room. Mom and Dad are always amazed by how well I move around for someone whom isn’t crawling yet. I toss and turn to where I want to be. I have also learned that if I lay on my back and plant my feet down flat, I can pick my booty up off the floor and move my body over. I do that a lot to get where I want to go. Hopefully soon I will be crawling. I’m still working on my arm and core strength. If I’m on my tummy, I can tuck my knees up under me and I don’t have a problem keeping my head up, but I can lift my chest off the ground with my arms. We had Birth To Three come out to visit today, again, to talk more about my therapy plans and how we can advance my skills. Birth to Three is an in-home therapy group that each county has, here in Wisconsin, and they work with kids like me whom should be home for therapies and (as Mom and Dad say) keeping me around my own germs. I’ll keep you posted on Therapy. It seems it’s been very slow to get set up, but I think next Monday is my first real session. I even get to have a massage! -Heath

PS. I ate peas for supper…so did Elmo.

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12/9/18 - G Feeds
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The picture…yeah, um? I’m really interested in my feet. I can grab them with my hands and bring them up close to my face so I can watch my toes wiggle. I’m not sure why, or even how, the wiggle, but they do. Besides that, I wanted to tell you that I am getting 40ml in my tummy (via the G port on my feeding tube) three times a day now! This is a big deal for me! So I get food and milk in my tummy now. Eating is going pretty good still. I’m getting better every day. Mom heard my tummy grumbling today for the first time ever. It sounds minor, but it was neat. I’ve had Milk in my tummy before, at the hospital when they tried to do continuous feeds, but this time at home is going much better for me. No pressure to increase volume too fast. Hopefully, soon, I’ll learn to drink and we can work on no tube at all! It’s my big goal for 2019!That and teeth! -Heath

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12/8/18 - Re-coop!

Today, we snoozed…well, Dad and I snoozed and Mommy went out and did stuff with the horses and went to the feed mill. I think it was really nice. I napped four times today and Daddy showed me how…ha, ha. We napped in the living room and on the big bed. After a long day yesterday, we were pooped. When Mom got home, we made chocolate chip cookies and the house smelled so yummy! We spent the night watching some book stories on the PBS kids channel until I was sleepy…which is now. Good Night. -Heath

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12/7/18 - A Cancelled Surgery

Wow! Today was exhausting. I got up bright and early to go to Milwaukee to CHW for my Pre-Op eval and some other appointments. First was the eval on the third floor of the hospital building. The Pre-Op lady come in and helped us make a plan for my scheduled GI surgery next Friday to replace my J tube with a new tube and a change the set up to a GJ. It was a quick appointment and we were off to Labs next on the second floor. At labs, since Dad was with and doesn’t like needles, Dad hung out in the corner as not to see, while I got my blood drawn to check my levels for my general check up later in the day. We had to then, rush out of Labs and get upstairs to the seventh floor of the clinic building, to the GI department for my next appointment. We met with my nutritionist about my fluids and food. We decided to go ahead and increase my caloric intake. So, now Mom will have to supplement my milk. She was very happy with my eating progress, too. She left and a member of my Gastroenterology team came in to discuss what we wanted to know about he surgery next weekend see if there was anything she felt needed to change after discussions with my parents. Mom and Dad made a push for a GJ verses just a J tube. That was a long appointment, but we felt good about everything going into next Friday. So, we went to our next appointment on the third floor of the hospital building at the Herma Heart Institute for my general check in appointment with the transplant team. We talked with them about everything we talked to GI about and them approved our plans. Then, we got to finally go home! I slept on the two hour drive home and was fresh and frisky when we got out the car and inside. Mom heard the phone ring not long after we got home and it was the GI doctor? What? She called to say that, after my appointment today, she went into my records and found who did my first J tube placement surgery and talked to them. She found out that the tube I have now, is not normally “installed” (for lack of a better term) in infants my size and that she was surprised to find out that I actually do have a GJ (technically) already!? What, again? She went on to say that I also, because I already had the J portion of my tube replace for a clot not long ago, do not need to have surgery next week! What, what, what?? Yes! This was crazy, exciting and fantastically confusing news to us! I do not have a normal GJ, I have a G tube that has a mushroom thing inside my stomach to hold it in and thru the G tube, there runs a J tube that goes thru my stomach to my gut. So, we found a tiny port on the G portion and the GI doctor said that we can go ahead and feed milk thru the G portion of my tube, around the J tube, and into my tummy as much as I can tolerate. It’s been a crazy day guys! -Heath

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12/6/18 - Mourning

Mommy is mourning. My GG’s funeral was today and my family was very sad. Daddy stayed home with me so she could go to the church with the rest of the family. It was in my best interest to stay home, away from so many people. This time of year isn’t the safest for someone in my condition. I’m still so little, immune suppressed and just out of a recent heart transplant…so, being around people old, young and stuck in a room together during cold and flu season just isn’t where i should be. Most of my family understood, but often enough Mom had to explain that since I was so little when my troubles began, I never got immunizations, gained any antibodies children my age normally would and to top it off I am on medicines to kill down my immune system. Kind of a rough combo to deal with. We also didn’t want to make the day about me, since so many people have yet to meet me in person. I would have drawn alot of attention at the wrong time. It’s such a weird thing to say and think about. Probably a little bit wrong to think or say, but that is just how life is in my world. The funeral was beautiful and GG would have loved it, Mom said. Lots of people loved her. She was a kind souled woman whom my Mommy felt very close, too. Thank you to everyone whom sent a card with condolences to our family. That was so thoughtful and sweet. -Heath

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12/5/18 - Fuzzy Buddies

I got a package in the mail today with a new fuzzie bear inside from my friend. If you’ve been following my story, I’m sure you know how much I love my fuzzies (my stuffed animals). I love running my fingers over their soft fur. When I was in the hospital still, I was on alot of medicine that made me sleepy and unable to move much, but I still always felt around for my fuzzies. They have always brought me alot of comfort. I sleep with them at night, have them with me during the day and even travel with a couple in the car. Each one has a special story and meaning to me. They all came from special friends and family and during different times in my journey. So, thank you so much to everyone that has gifted them to me. Love you all! -Heath

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12/4/18 - Sensory

Mom and I put up more decorations for Christmas today. I’m loving the new things to look at and think about. Dad has been home this week and he is working on our upstairs bathroom, so I’ve been hearing a lot of new sounds, too. When I was still in the hospital a really nice company came out and helped up remove the chimney that was in our house for an indoor wood furnace we had to heat the house in the winter (we have LP, too). Since I was coming home soon, the wood furnace couldn’t be inside anymore, even though it was in the basement, because Mom and Dad were concerned about any particles in the air from burning wood. They didn’t want anything to bother me or hurt me, plus the wood heat really makes the air in the house dry and I need to stay really healthy. So, drying out your sinuses while you sleep is not a good way to keep colds and sickness away. Even now, I still sleep with a humidifier. Anyhow, removing a chimney from our house left a lot of open space and we had to redo some walls and rooms changed, so Dad has been fixing stuff up (to Mom’s standards…ha, ha). We have a nice home. I love it here. Along with the wood furnace, redoing the roof and wall repairs, we also had our air ducts cleaned really well before I came home. It’s been a long process, but it’s been a lot of new things for me to hear, see and smell at home, too. I love sitting and watching with my puppy. We joke and call it my Sensory therapy. I suppose real life things like all of this are sensory therapy. -Heath

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12/3/18 - The Big Bed

Sometimes, when I nap in the afternoon, I get to lay on Mommy and Daddies bed instead of napping in the living room or in my crib. I really love the big bed. It’s huge compared to me, so Mom will pop me down in the middle and I’ll make myself a nest of the comforter and my blankie and fall asleep. It’s always hard to get up, though, because I want to stay in the warm cozy spot all day. -Heath

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12/2/18 - My First Snowstorm

I’ve seen snow before, just little bits and thru the patio door in the living room, but today it was stormy! I saw big snowflakes come down and cover the yard white. It made everything so nice and it glittered a little. I think it looks like a lot of fun! When Daddy let my Labbies out to play, they ran up near the patio door, in the yard, and I got to watch them eating the snow and rolling in it. It looked soft and yummy, too! I was warm and cozy inside the house, watching them from the couch. -Heath

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12/1/18 - Futurity Day

Mom said we love December in our home. Not only is it a month of beautiful snow and family time for Christmas, but it’s also Mom and my Aunty’s birthday month, time for the National Finals Rodeo and last but not least, its the start of Futurity season for the up-n-coming young horses. We have horses, futurity horses. A futurity horse is a horse that is young and hasn’t competed yet. There are shows called called Futurities that are for all of these young horses to compete against other horses that are also the same age…it makes it fair. Anyways, today is the official opening of the 2019 Futurity season. Anyhow, I think I’ll really love the horses when I get older. Mom and Dad always make sure i have my little stuffed pony with me and I also get to see our horses thru the window. When I get bigger, I’ll be able to be around the horses. Right now, I’m a little to “fragile” to be around the germs and the cold. Speaking of the cold, I don’t know what to think of it? Whenever I go out to get in the car, when we go somewhere, I feel a little cold air come from the garage and it makes my skin get goosies. I usually talk and tell Mom I don’t like it. Usually, Mom will put my blankie up over me so the air doesn’t hit me, but lately, now that I’m getting bigger, I just want to see and will pull it back off. I am getting bigger! Here are some pictures from today. I was a wild man and played so hard. I snoozed hard, too! -Heath

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11/28/19 - My New Angel

My great Grandma, Ruth, became my new angel today. My family was all really sad. She was a really good lady everyone said to me today. Mom tried to explain angels to me, but i’m little and I don’t get it. I imagine an angel is like the blue angel I had in the hospital with me thru all my really bad and really good days. Angels stand guard and watch over you from a close distance to make sure you stay strong and don’t give up. I love my GG. We will all miss her, but I love her angel, too. -Heath

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11/27/18 - Trying Something New

Well, you know I’ve been trying really hard to learn how to eat foods, right? I am doing better and eating a bunch of stuff with a spoon: bananas, peaches, peas, carrots, sweet potatoes, etc…Yum! I have my feeding tube still and even though I am eating pretty good now, I still don’t drink, so I need my tube a while longer so I don’t get dehydrated. Today, though, we tried something new! A bottle with some milk! Okay, I know this might not seem like a big deal to most people, but I went thru a lot and never learned to suck or swallow liquids. So, this was my first ever bottle! My first bottle at just over nine months old…(that will be a great trivia question for when I get older). I did okay. I don’t really suck on it, just kinda play with it with my tongue and squish it with my gummies. Some milk came out and was pretty good. I hold the bottle and that’s about it. We will keep trying and trying. Just like with the spoon fed foods. If I don’t learn to take a bottle, we are going to try a cup instead. So, wish me luck! -Heath

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11/26/18 - Bummin'

We just bummed today at home. Mommy cleaned house and got some work done. I played with my toys and watched. I think my favorite thing to do on bum days at home, is to walk around with Mom. She will pick me up and carry me around the house. I get to see out the different windows and whatever else i see looking around. We made some noodles in the kitchen and Mom let me touch one when it was cool. It stuck to my hand and i got a little nervous. She showed me it was okay and I grabbed it this time, smooshing it between my fingers! The noodle was floppy and easy bend. I wonder if that’s when Mom and Dad call me a noodle sometimes; because I’m floppy? He, he. Anyhoo, textures like that are so much fun. When we do laundry, I always touch all the different textured materials. It’s weird that some things are soft and some things are stiff (like Daddy’s Carharrts). All of my clothes are snuggly and soft, just how I like. Hmm…what else did we do today? I napped a bunch and that was about it. It was a nice relaxing day. I’m really feeling so happy at home guys. It’s the best! -Heath

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