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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11/25/18 - Pooches

A while back, when I first got home, my Grandmas’ friends all sent me some wonderful gifts. one of them was this hand puppet puppy (say that three times, fast). He is so soft and fluffy. He sings, too. The singing has scared me a little, because he is quite loud, but I really love him anyhow. When I was in my jumpy chair today, Mom was helping me play with him. I’d smile and clap my hands down and then he would come in and lick me on my cheek. Sneeky pup! He makes me smile. Grandma’s friends also sent me some sockies and toys and a picture frame…hmmm, oh! and a piggy bank and a blanket. They know me so well. He, he, he. Soft and snuggly or loud or anything to do with pictures all make for perfect gifts. It was really sweet. I actually needed some sockies, too. I’m growing so much! I’m in 12 month clothes now. My 9 month clothes are all too tight in the torso. My family and Doctors all think I’ll be pretty tall when I am big. I just need to grow up big and strong! -Heath

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11/24/18 - Still Behind

According to my developmental check up from the other day, where i took a nap, I am a little bit behind on some physical skills. We knew that, it’s not my fault. I was medicinally paralyzed, had several major chest/core surgeries and had been heavily sedated for most of my life…so, I’m going to have some struggles. That’s a given. That being said, I’m doing well. I’m starting to enjoy tummy time, play more, get stronger, move more and do all kinds of new things. Time will be my best friend. -Heath

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11/23/18 - My First Hair Cut

I had a big day! I got my hair cut! My FIRST hair cut and, to make it great, I sat on my Dad’s lap. He got a hair cut, too. I wasn’t scared at all and I sat really good for her to cut my hair. She actually cut a bunch! It was needed, though, because it was driving me crazy around my ears. So, here are the pictures. Don’t worry, Dad cut his hair too (don’t pick on him…Mom does enough ha, ha). -Heath

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11/22/18 - My First Thanksgiving!

Happy Thanksgiving guys!! My family dinner was absolutely wonderful! We ate, talked and watch football at my Grandma and Grandpa’s! It was perfect! I hope your family time was perfect, too! -Heath

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11/21/18 - Finger Nails

I scratched my nose. Mom trims my finger nails a minimum of twice a week. They grow so long, so fast and with how much i like to scratch, we have to keep them trimmed up. I do like to scratch stuff. Not just myself, but chairs, mats, tables, toys…it feels kool when i scratch and some things make a neat sound when i do it. If it’s quite in the house, Mom and Dad will hear me scratching from across the room. I’m into it. Not sure why? -Heath

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11/20/18 - Tummy Time

I was playful and wild today. Mom set me up for tummy time and I hit my toy and moved around my mat. I don’t crawl yet, but I do wiggle myself around. I had a nice day. Yesterday was exhausting and I slept in until 9am today! Usually I am up around 7am or so. It was good to catch up on the sleep though. I guess that is a perk of having a tube for medicines…I didn’t have to get up at med time. Not much to say today. -Heath

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11/19/18 - Another Check Up Day

I had a really, really long day! I went to CHW for my general checkup and a half dozen other appointments all today. I also had a developmental check up. So, when we got there, I went to labs first to get my blood drawn. The lady I like was there today, we I was able to get all my blood work done in just one poke, because she is the bomb! Sometimes, when I get labs draws done, the lab tech will poke me a dozen times to try to get blood. It’s horrible and we hate it. Got lucky today! After labs, we went and had an Echocardiogram done. All the pictures looked pretty good, the doctors said. That made us really happy. Then, we taked to Pharamcy about my medicines. Mom has been really, really frustrated with the home medicine ordeal. We order medicine for a month at a time (that’s how they do it) and have been short on my medicines the first two months since I’ve been home. Then, end up having to scramble when we don’t have enough medicine. It’s been so frustrating. I always ge the exact prescribed amount, but by the end of the bottle, the medicines get so low and goopy. The pharmacy doesn’t give you any extra, at all, so you are expected to use the gooby yuck? No way. So mom switched from the CHW Skywalk Pharmacy to the Walgreens in our local town. It’s been good so far and we definitely have enough meds now and if we do run short, we can get medicine quickly. Then, the CHW pharmacy also canceled my Mycophelolate medicine (one of my lifetime anti-rejection medicines)? I think we have everything worked out now, thank goodness! Anyhow, my general check up went good and the team was happy with me. I’m starting to eat better and we increased my milk flow thru my J tube, so I’ve grow/gained weight. I went to my developmental check up after, and the therapy ladies all visited with me on the floor (on a mat). They wanted to see, about, where I would be on their developmental scale. I had to pick up and hold things, play, do tummy time, sit, look when they called my name and all kinds of things. I didn’t “preform” for them at all like I would at home. Not only was I tired from getting up at 4am to go to my appointments (we live far away from CHW), but the appointment days always wear me out. I was tired and wanted to nap…so I did. They gave me red marks for that, but I’m just a baby. We didn’t learn much more than we already know…I need to work on my core strength, mostly. I finally went home after the long day and slept so hard. -Heath

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11/18/18 - Daddy Time

I had a really good day and went to work with Mom. Did all the normal stuff and things during the daylight hours. Then, Dad and I got to play a whole bunch tonight! I laid on the floor with all the dangley toys and showed him how strong I am. I can grab a toy and pull it until the whole ordeal bends now! Then, I let it go and it springs up! It’s fun and not hurting anything, but I’m starting to outgrow this play mat. -Heath

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11/17/18 - Bouncy Time

I had a wonderful day! I feel so good, guys! I sat in my jumper and played for the longest time. I was yelling and making all kinds of sounds. Mom was laughing at me and called me a crazy little squirt. I just smiled. I like to jump just a little bit, but mostly, I like to walk myself around a little in the jumpy chair. It’s fun to push myself and rock the chair back and forth. I’m not real strong yet, but it works my core a lot when I’m swinging around. Therapy hates toys like this, but we use it and I love it. Lots of Mommies and Daddies grew up using walkers and jumpers, so I’m not sure what the deal is with that. I’m getting stronger and stronger! -Heath

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11/16/18 - Bath Hats?

I love having my towel on my head after a nice bath. That got me thinking today; why don’t we have “bath hats”? Like a hat, that is kind of like a winter hat, but that is made out of towel? It sounds like a good idea to me! -Heath

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11/15/18 - Camera Shy

Who am I kidding? I am not camera shy at all! My hair is getting so long! Mom combed it out of my eyes today and I was so cute. I think I’ll need a hair cut before I’m a year old? I am getting frustrated with the pieces that touch my ears. I pull the hairs and try to brush them away. I had a really good day today, besides. -Heath

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11/14/18 - Babbling Boys

You guys!, I talk now. I talk all the time! I yell and babble, I coo and squeak. It’s so funny. The first time I made a loud sound, I scared myself. I was all excited and kicking and bouncing myself in my bouncy chair and this “ka” sound came out. I stopped, still and didn’t know what it was? Then, I found out it was me! I made that sound! So, I did it again and it was so kool! I will definitely be working on this voice of mine, more and more, everyday! (I didn’t have a good picture for today, but when I took my bath, Dad took this one.) -Heath

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11/13/18 - When Dad's Gone...

My Daddy has been gone a lot for work and we miss him. He works for a really great company that has been really sweet to me. They even came to my golf outing this year. Anyhow, Mom and I send Dad funny pictures like this when he is gone. I love making faces! -Heath

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11/12/18 - Stretch Armstrong

I think I am related to Mr. Stretch Armstrong. Mom and Dad say, when they were little, there was a toy that would bend and stretch in all directions. It was shaped like a man and that was his name, Stretch Armstrong. He was all of those things, and tough too. Mom told me that the stretch armstrong toy her and my Uncle had when they were little, got left on top of the VCR and somehow melted all over the place and was a sticky mess. A sticky mess like me. Ha, ha, ha! Anyhow, I am really flexible and I can make myself into a pretzel! -Heath

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11/10/18 - Baking Cookies

I know, not safe to be on the counter, but Mom was right with me and my Bumbo was suctioned to the surface. I wasn’t going to fall… Anyhow, this is what we do when we bake! I wanted to make some cookies for Dad and Mom wanted to get some Christmas cookies started and into the freezer, so we baked! I love watching how things mix and the smells are so interesting. Mom let me taste some dough that didn’t have eggs in it. It was good. i just had a little, but it was yummy. I can’t wait until I can help. -Heath

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