8/17/18 - Speech Therapy
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I played hard this morning with Mom. I love the play mat! I'm getting good at hand eye coordination stuff pretty quickly! I can kick and bat right what I want to. Now, I am working on the next thing...grabbing stuff. I reach out and touch, but I am just learning to grab things now. So, today I figured it out. I reached out and snatched up Mr.Beaver's tail and pulled it. I did it a couple times. He never knew what hit him. Sneaky guy. I didn't goober all over him today though, I had better things to do. Today, the Speech therapist came to see me. We moved the play mat and I sat up in my Boppy so she could start teaching me how to use my Nuk. I'm not sure what to do with it yet? She pressed it up in my mouth and squished my cheeks in a little. I started to chomp on the Nuk and it wasn't too bad. I started to kind of figure out how to suck on it and then I got tired and fell asleep. Ha, ha. Maybe, after a weeks worth of daily sessions with her, I will begin to get thee hang of it? I think so. Then, the next thing is food! Food, food, food! Yay! 

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Today, the Speech therapist came to see me. We moved the play mat and I sat up in my Boppy so she could start teaching me how to use my Nuk. I'm not sure what to do with it yet? She pressed it up in my mouth and squished my cheeks in a little. I started to chomp on the Nuk and it wasn't too bad. I started to kind of figure out how to suck on it and then I got tired and fell asleep. Ha, ha. Maybe, after a weeks worth of daily sessions with her, I will begin to get thee hang of it? I think so. Then, the next thing is food! Food, food, food! Yay! My bro-dude today moved my NJ tube so it's now in my tummy (NG). I am so happy. Full tummy today for the first time in a very, very long time. I felt more like a normal baby. The speech therapist said that getting more normal feeds that are scheduled and going into my tummy (instead of the continuous feeding into my intestines directly) will probably trigger me to want to suck when I feel hungry. So, that could really help. I want to try my best to get off of the NG and get to feeding like a normal baby. Hopefully from a bottle, but probably from a special sippy cup instead if i can't figure a bottle out. I'll keep you posted on all of this. It will take some time. 

I think that is all I have for updates today. Will tlak tomorrow! -Heath

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8/16/18 - New Voice
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First thing this morning, this guy got a new voice! Well, I haven't used it yet, my new voice, but it should be there when I decide to try. The ENT team went ahead and injected Restylane near my paralyzed vocal cord. Restylane is the same stuff that's used for cosmetic filler (like for lips). It's a non-animal sourced hyaluronic acid. It breaks down with time. So, they injected this stuff to help stiffen up and re-position my vocal cord. The injection will likely need to be re-done in several months time. The ENT team is hopeful, that within that time, the nerve that is damaged (that helps my vocal cord function correctly) may heal or at least recover enough to be acceptable. The ENT doctor said that if, within a years time, this vocal cord hasn't worked acceptably without help, we would need to consider an alternative method to repair it's function. Some people with similar issues never fix it and live comfortably without repair, too. So, we will see how it goes for me. I think today, after my prcedure and all, I am already breathing better. Maybe it's just thinking ahead, but Mom thought so. I was very comfortable all afternoon, at least. Hopefully, tomorrow, I will be more awake and want to make sounds for the first time? Mom is going to cry her eyes out when she hears me cry for the first time. We know that already. Ha, ha. I may get to start NG feeds already this week, too. If all goes well. I can not wait for a full tummy! Yay!!

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Also, today Mom talked to one of the heart doctors about the results of the heart muscle biopsy taken at my Cath. Lab. A catheter was inserted and at the end of it is a tool to take a tissue sample. The tiny piece of heart tissue they took were sent to the lab for examination under a microscope (with dyes). Doctors, known as pathologists, examined my heart tissue for signs of infection, inflammation or abnormal cells (looking for signs of rejection). They do a biopsy just to see if the heart tissue is normal.The biopsy from my catheterization the other day has been at the lab and we have been waiting to hear the results. We heard back today and I have no rejection signs this time! Yay, again!! Such amazing, wonderful news. She said that the lab had a couple minor concerns about some possible scar tissue (from my new heart being stiff at first we think) and that there may/may not be a sign of a virus. So, we started antibiotics today and sent blood to lab for testing, just to be safe. 

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Because I may have a possible virus, the care team decided to move me to a new room in the hospital that is negative pressure. It keeps germs from hurting other patients. Its just a precaution. There are alot of sick little ones like me here. So, I have a new room now. It looks the same. Yellow walls. Always the yellow walls. Hospital walls should be funner. I can't have my special wall back up or it would be so nice to look at right now. When I get home, I can enjoy all the art your guys made me again. I played a short while, sitting up with Mom. I have my eyes on my toes for the next thing to try to eat. They look tasty. Then, I laid in my Boppy and watched my fishes and fell asleep for the afternoon. I had a busy day. A good one, though. Thank you for the prayers. Good Night. -Heath

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8/15/18 - Play Hard, Nap Harder
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So...here's the thing. I have been trying for two days to get something. There is this Beaver that hangs down from play mat Mom brought in. Mr. Beaver has been taunting me with that beautiful, crackly sounding, soft, dangly, flat tail of his. It needed to be in my mouth! I wanted to chomp on it and I tried, believe me...I tried! I kicked, squirmed and punched, grabbed until I ran out of energy yesterday. The sly Mr.Beaver bounced around and avoided my moves. Today was my day of victory, though! I gave him a left grab and a right punch, a quick bed shaking kick and then, with luck on my side, I snatched his tail up! Into my mouth with all it's glory. The carckly sound and soft fabric were perfect to help sooth my aching gums. I drooled and chomped all over him. My reward! He, he, he! Mom eventually took him away and washed him, though...I went a little too overboard. It was worth it!

After a very long play session and epic battle with Mr.Beaver, I had myself a nice bath. I am not the biggest fan of baths, because i don't like getting chilly. I do, however, enjoy very much to be clean! I get wild after my baths! Smiles and kicks and big, big stretches! Today was no different! I felt so good. So very good. "Wild man Heath, is a happy Heath", that's what my Mom says to my girlfriends. They all agree. What do you think of my scars? No more stitches and they all are healing great! Anyhow, I don't know what it is, but I feel good nowadays and get bursts of crazy energy that make me want to yell and smile. I can't make sounds yet, so I exaggerate my expressions and make movements with my body to say what I want to say. It works. Hey, speaking of sounds! Tomorrow is the new day for my vocal cord repair. Mom talked to the ENT staff again today and supposedly they are planning to do my injection tomorrow morning about 7:30am. Wish me well! Gosh, I can't wait to have a voice! I've never made a crying sound or coo or anything in my whole nearly six months of life! It's absolutely crazy! I am so exctied for that and even more excited to finally get food into my tummy again! I don't know if you can, but try to imagine not having food in your tummy for months. I get plenty of nutrition thru my NJ tube that skips my tummy and goes into my intestines, but it's not satisfying. I am excited to have a full tummy. It will be so nice. I'll feel a little bit more normal and be a little bit more normal to go home, too. Oh, I hope they do this and it all works out great. Please pray so very hard tonight with me. 

After a bath and a wild man spurt, Mom and I relaxed and she read me a book until I fell asleep for an afternoon nap. A wonderful day. We read "SkippyJon Jones". It was a gift and it was funny! There is a cat and he pretends to be a tiny spanish dog. Mom read it and she sounded so silly. It made me smile. I liked the pictures. Okay, well...bed time for me! Another big day tomorrow. Good Night. -Heath

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8/14/18 - My First Heart Catheterization Lab

Today was the biggest day since my heart transplant. First, it started out light hearted and fun. Mom was here extra early to spend time with me before my procedure. We played hard today! I got a play mat gym with forest creatures on it and got to use it today! My mommy kept all my baby shower gifts to use when I started to get better and we can finally use some of them. She was so sad seeing my room sit and have no life in it, everything untouched. So, getting to start to play with things and wear more clothes and stuff is such a wonderful, happy thing. I laid on my back and stared at my reflection in the mirror while I kicked the toys to make them swing. Then, I took a cat nap. When I woke up, I played some more. I punched out and swung the toys around. I hiked my knees up to my belly button and kicked my feet out to hit more toys so the sounds they made started to play. It made me smile so big! I was so happy that I could do it! Mom, my girlfriend and therapist all cheered me on. It was so awesome! Yay!

After we played, Mom picked me up out of bed and held me like the threapist taught her yesterday. We both loved it so very much! It's so nice to be close. Mom is warm and I snuggle right up to her. I like to have my hand in my mouth and chew while she gently bounces me up and down, side to side. I like her necklace and would probably like to eat it if she'd let me. It's shiny and catches my eye when we move. She says necklaces aren't for little babies though, so I don't touch it. After we stood and snuggled, Mom laid me down for some tummy time! I am really getting into this whole tummy ordeal. It is so nice to be off of my back. I don't face plant any more and have learned to turn my head to the side how I feel is comfortable. Sometimes I hike my knees up under me. I can't push myself up with my arms yet though. Once I learn how to move my top half and get stronger, I will be able to roll myself! I am almost there already. I know how to get from my back to my side and my side to my almost belly. I get caught up when I can't tuck my arm under enough to completely roll. I am working on it though! 

I went in for my Cath. Lab today and was under anesthetisia for a couple hours while they did the procedure. They made a small hole just by my left hip. Then, the inserted a catheter into my artery to my heart. In my heart, with the small catheter the care team was able to check pressures, flow and function of my new heart. We were told after, that my new hearts numbers from the Cath. Lab came back good. Actually, better than they hoped! It was fantastic news! The "hardening" of the heart that we were concerned about post transplant doesn't seem to be an issue anymore either. They also took a small biopsy while checking out my heart. This biopsy is at the lab being studied for signs of rejection. We should know more about the results of that, hopefully tomorrow. Then, the last thing that they did in the Cath. Lab was take some blood. We agreed to let a few doctors from the care team have a little bit of my blood to use for a study that they are putting together. It is to try to come up with a way to look for signs of rejection using a simple blood draw instead of having to put patients thru many Cath. Labs. We hope that my contribution to the study will make a difference some day when they hopefully do come up with a new, better and safer way to check for rejection. So, all that and I got to go back to my room. My bro-dude from Anesthesia said that it was important I lay very still after my procedure to allow my body to stop any little bleeds. So, I had a PRN dose of Morphine. I haven't had one is a very long time, so it knocked me right to nap time. It was necessary I guess.

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I slept well all evening and ended the day with sweet dreams. We are getting closer and closer to home. They chose not to do my vocal cord repair again today. I guess there were timing issues? Mom pushed the issue a little bit and ENT staff scheduled my new repair/injection date for Thursday this week. Hope it all goes well! Kind of bummed I'll have to have more sedation though instead of doing it all at once, but sometimes that is just the way it goes in the hospital. Plese continue to pray that my heart clot stays stable and doesn't move. Pray that is just dissipates and doesn't cause any trouble so I can stay on track to go home! Thank you. Good Night. -Heath

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8/13/18 - Lots Of New

Okay, okay, okay...I’ll admit it! I, Heath Cornford, am a finger eater. A goobery, lint covered, hardcore finger chomping fool. I didn’t realize how bad my addiction had gotten until today. I mean, I know I have a slight problem, but I found myself double fisting the chomp today and an intervention was needed. My physical therapist couldn’t get me thru the session without my hands traveling to my mouth. Mom couldn’t give me a bath without my fist in my gums getting chomped on. My fingers are always in my mouth. I just can help it. The curiousity of teeth coming in, the wet tongue in the little mouth of mine and feeling it all with my fingers...it’s...it’s amazing! I can’t quit. I’ve been feeling around for my first teeth for a while now and today, I may have found them? My bottom front two teeth are beginning to pop up enough I can feel them. I keep licking and drooling, feeling around and then bam!, there they are. I mean, teeth are weird and all, but I am excited to have them, I can flash my pearly white baby teeth at my girlfriends soon. I wonder how my big smiles will look with scattered teeth, while they fill in? 

Today was a big day of new things for me. I can sit up and hold my head up by myself! I’m not super steady yet, but I can do it. Mom only took her hand away for about ten seconds to show you guys, but she kept her hand off my head (only keeping it there in case I needed help). I did so good. Help from the Boppy pillow to sit, but I did a lot on my own too. I’m getting good at balancing to stay up and getting stronger to hold my head up better, too. Hopefully I will be able to sit up in my Bumbo chair without someone ready to catch my head. Soon! I ended up getting tired and stretched out in my grandpa socks for a while and stared at my mobile. My physical therapist helped me do a lot of new things today, too. During my session with her this afternoon, I  almost rolled myself! She had me lay on my back and then helped me to my side, from there I hiked my knee up and rolled my body over quite a bit. It was very exciting. I also, laid on my tummy flat and strait out on my bed for the first time. It actually felt great! Then, she showed Mom some new ways to safely hold me and help me get stronger too. First I got held kind of up against Moms chest. I loved that position so much and dozed off. Then, my therapist showed Mom how she wanted her to hold me in a way that kind of is like tummy time for me. Face down. It was also super comfortable. We are excited to try those out more this week. Therapy was really, really good today. I get to try out my first play mat tomorrow in therapy. I’m excited!! 

Tomorrow is the big day for the week. My first Cath Lab (a thorough heart and body checkup looking for signs of rejection). It is a big deal. Praying for the best! I’ll keep you posted. Please pray real hard for me tonight. Going to get rested up! Good Night. -Heath

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8/12/18 - A Little Country
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I wore them proud today, my first set of cowboy boots! My friend Sally's Mommy made them special for me and I love them. My Grandpa is a cowboy and always wears his cowboy hat. Mommy rides horses and is a cowgirl. I think I would like to wear cowboy boots when I am bigger and helping out on our land. They suit me. Dad says work boots are better, that's because he's a hunter more than a cowboy, but I will have to see what's most comfortable for me when I am big. For now, though, I love these! They make me feel so kool! I look even more like my namesake, Heath Barkley (look him up if you don't know who this is)! He was a cowboy. Maybe I'll even ride a horse someday? I have a bunch of them at home. Hmm...I'll have to try that someday. Mom says girls like horses...I like my girlfriends...yup... Anyhoo, look how kool I looked after my bath! I tucked my feet up so I could look at the stars on the sides. I've gotten a few pairs of booties that I love, made for me by friends and the church, but my feet are big and they don't fit. These are a little big still. Hope they fit for a while! Love them. 

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I also wore a regular onesie for the second time ever! I felt pretty hunky. I smiled at my girlfriends in the hall and they came and looked at me and told me how handsome I was. I'm such a flirt. Mom was there too, though, and she smooched my forehead quick to let them know I was very taken. He, he, he. Mom is annoying. I kicked my boots of and snuggled in the recliner chair with her for a long while today, after my bath. We needed it. It's been almost a week. I've just been so busy when it's time to visit that by the time my doctors, girlfriends and bro-dudes have left...I am spent and just fall asleep. She would feel bad waking me up, so just sits next to my crib and holds my hand. Like we have done for 171 days now...Mom and Me hold hands. It's our thing. Thru the really, really bad days, the better days and for every day...we hold hands. Although, the first person I ever held hands with was Dad. Right when I came into this world and right before I died the first time. So scary, but he knew I was tough and look at me now! I'm a Sheriff! LOL

I'm really starting to think more about home. When I nap, I smile so big in my sleep, and think about home. My hospital family and Mom were talking about me smiling in my sleep today. I was kind of awake and listened while they pondered what I dream about. They thought maybe I dream about being in Mommy's tummy, colorful dancing Giraffes in the books we read together or maybe about things I imagine about home and family? I don't know really what I dream about? I can't remember when I wake up. I probably dream about family voices I have learned the sounds of and about the things we will do and say together. Or maybe I dream about the dancing Giraffe in my book? Hard to say...I do know that I want to go home more than ever! I can't wait to get as much unselfish attention and snuggles as I want. to be able to spend unlimited time with my Mom and Dad and our family and critters. It will be so nice! I just have to continue to heal and get stronger! My Cath Lab is Tuesday to check on my new heart and see how it's doing internally and rejection-wise. Praying that all is okay and goes well. Please pray the clot in my heart has dissipated, too. And that the care team fixes my paralyzed vocal cord Tuesday and that it goes well. Pray for me, my family and my donor family. Thank you guys so much! -Heath

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8/11/18 - Bugs!

Oh, I was sleepy this morning. I snoozed so hard. I was pretty sweaty when I woke up. Well, when the Respritory Therapist woke me up... He had too. I had to have my breathing treatment. This is how that works. They put a mask on up over my nose and mouth, medicine in the tube bubbles up into mist and I breath it in. It goes into my lungs and helps open them up and break down gunk so I can cough it up. Gross, I know. Necessary though. It works great for me. This RT guy, he knew the right way to help me thru this treatment and sat me up. I didn't even cry. Something about laying down when they put that mask on my face is very scary. I mean, I am always super brave, but I like sitting up better where I can kind of lean into the mask instead. Anyhow, after that, I was in need of a good bath again to clean me up. I was really good for my bath today. After, my grilfriend gave us a warmed balanket to put over me to dry. It was nice. Mom and Dad thought I was so adorable snuggled in it while they got my clothes. Then, I fell asleep in my Boppy. 

After my bath, before I dozed off, Mom and Dad put silly bugs on my wrists and toes. Thank you for the bugs Ellen! They jingle when I move them and it made me smile. I also enjoyed chewing on the bugs on my wrist (don't worry, Dad sanitized them before we put them on). I fell asleep with a bug head in my mouth until my arm fell down. Ha, ha! I eat everything nowadays...well, not actually...I chew and drool on everything I can. These teeth are coming soon! We can't see them yet, but they are there. I'm not sure I'll like teeth? Teeth are weird! Bones grow out of your skin and in your mouth?! Eww. That sounds bad. Mom and Dad say it's not so bad. You need teeth to eat. I need to eat so I grow big and strong. I feel stronger every day now. I've been coming down on medicines and been a little extra sleepy as a result, but when I am awake, we play pretty hard. I love sitting up, as you know. So, today I sat up and played with this block toy that has lots of stuff on it (therapy brought it in for me). I find it interesting. I like to touch stuff and just kind of check it out tight now. I am only 5 months old...

Good Night. Please continue to pray for my heart clot to dissolve, for my vocal cord repair to go well, for me to learn how to eat normal after it's fixed or at least be able to get an NG tube and that my Cath Lab goes well Tuesday. Lots of exciting days coming up and I want to be strong and healthy for them. Talk tomorrow! -Heath

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“Faces of CHD” college from the Mended Little Hearts National Organization Wisconsin chapter’s picnic at the zoo. My picture is on the left bottom side. I’m wearing my teal stripe shirt 💜

#CHDAwareness

Mended Hearts is a United States-based charity which functions as a support group for individuals suffering from heart disease. It was founded in 1952 by cardiac surgery pioneer Dwight Harken. Dr. Dwight Harken was the first surgeon in history to repeatedly perform successful heart surgery. Dwight Harken asked four post-surgery heart patients to get together to give encouragement and support to each other and prospective patients. It was there that these patients spoke of their "mended hearts". Mended Hearts offers a program for the families of children born with congenital heart defects known as Mended Little Hearts.

Mended Hearts is the largest heart patient peer support network in the world. Mended Hearts partners with 460 hospitals and rehabilitation clinics across the United States. Its 300 chapters and 20,000 volunteers touch the lives of patients throughout North America, assisting patients and caregivers from diagnosis through recovery with social, emotional, and practical support. Mended Hearts is recognized for its role in fostering a positive patient-care experience, and provides services to heart patients through visiting programs, educational forums, and support group meetings.

More about Mended Hearts and Mended Little Hearts: https://mendedhearts.org/about-mended-little-hearts/

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8/10/18 - Ticklish
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I had another bath today and my hair washed. I like to feel clean. It makes me smiley. Then I snoozed. The care team went down on my Fetnyl again today to .3! I am slowly getting off the medicines and its a wonderful thing! I am starting to feel and act like a baby my age should. It makes me, my care team, my friends and family all so very happy and thankful. I hope things continure to progress well. I still have the clot in my heart as of the last Echocardiogram. I think they have another one scheduled soon. Praying that it has broken down more. For now, just more rest and healing.

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My grandma and grandpa Raedel came today and spent a long time visiting with me. I loved it. I sat up big and tall for them for most of the visit. I can sit so good. I can hold myself pretty steady. I like sitting because then I can see people better. Grandpa tickled my feet. That stinker! I curled my toes and tried not to jump, but I'm so ticklish! So, I pulled my foot away and tucked it up so he couldn't get it. Then, I gave him a look. He laughed. Then, I stretched out again. He put my socks on and left my toes alone. Stinker. Grandma helped me hold and shake my rattle. It made me smile. The noise was pretty neat and it made her smile, too. 

I hope for a nice weekend. I have some new books, toys that go on my feet and cute cowboy boots to put on...super exciting business! Good Night. Please continue to pray for me. For recovery. For my family, my donor family. Thank you so much. -Heath

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8/9/18 - The Slow Wean
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Not an exciting day...the best kind. My breathing treatment went well. Not so much urpies today. A good thing! Maybe that means that the gunk has worked itself out? The care team ended up postponing my vocal cord repair that was scheduled for today. It's frustrating, a minor set back, but it was overall the best decision. So, the new plan is to do that the day of my first Cath. Lab in a week or so. I had a great therapy session with my OT girlfriend. She left me sitting up in that big blue tumble-form chair. I fell asleep in it today and was actually comfortable! That's how we know for sure I'm getting big. I've never bee comfortable in the thing. My nurse today put a sock on my hand so I would stop pulling my tubes. I woke up to Mommy stroking my head. She helped me out of the chair and smooched my forehead. I like when she does that. I close my eyes softly and give her big smiles. We get along pretty good; her and I. Lots of love. 

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She thought I was a little sweaty and changed my clothes. I laid down on fresh bedding, a clean diaper and was out like a light. I napped. I napped all afternoon. I pee'd really good today, though. Not really sure what happened yesterday? So, we all feel better. My numbers all looked good today, too. I am coming down on medicines this week. The opioids, narcotics, diuretics, etc... It's not an easy thing to do, but I'm handling the slow wean pretty well. They had to increase my heart medicine a little because my blood pressure was a titch too high today. Could be a sign from the wean. Not too much for withdrawals overall, though. Thankfully! Going to keep resting and healing. I have a lot of work ahead of me. Catching up to do! -Heath

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8/8/18 - Peeeeeeee

I had a bath and then I did a lot of sleeping today. Sometimes, when a long term girlfriend comes to spend the night with me, we end up awake most of the night visiting and I don't get enough sleep. Such case was last night. Love the ladies, but they are exhausting...talk, talk, talk, talk, talk! How's a man like me supposed to get any sleep? She was too pretty to not look at and I have to keep a reputation here at the hospital you know. So, I stayed up all night and today I was wiped out. I held Mom's hand and smiled in my sleep; happy dreams. Lots of happy dreams. 

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I had another busy morning. I had a breathing treatment right away again, like every day. When I have them (it's a nebulizer treatment) I have lots of broken down flem to cough up. It wore me out, but I felt clear and better after some good coughs and some little urps. Therapy came and did some work with me. I sat up in that too-big-for-me pro form chair thing again and didn't like it. I did good for therapy otherwise. I am getting smarter and stronger every day. Later, my Echocardiogram happened and it seemed to go well. My doctor stopped to talk with Mom and Dad was on speaker phone listening in. I guess when they looked at my heart today, they saw the clot still but the "dangley" part of it has dissipated. Hopefully the rest of it will continue to break down and also dissipate. So, that was good news. My heart function seems to be stable and the care team is happy with everything so far. The doctor also told us that the care team may hold off on my vocal cord repair, yet again. I guess they have a couple concerns...one being that I could develop a hemotoma from the injection from being on anti-coagulants and second, that because I have a Cath. Lab set for less that two weeks from now, it might be better to wait until then. The care team is discussing with ENT whether being intubated with the ventilator tube during my Cath. Lab appointment will hurt my recently repaired vocal cord when it puts pressure on it. So, we will learn if that is happening or not soon. Not sure what the best answer is right now? Ugh...everything is a waiting game. Fine finess. I am a very patient guy though. Thankfully. 

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I had slept most of the day and was awake a short while for Mom to clean me up and change me. I sat up for her and stretched out good. Then back to my nap. Other than that, I didn't pee today from 4am until after 2pm...the care team was worried. Then, I watched my Mom leave the room for a minute and i let it all go...everywhere. They were no longer concerned. You're welcome. He, he, he! I napped and was happy as a clam. I'm about to do the same. Good Night. Thank you for the prayers. -Heath

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8/7/18 - My Broken Heart

There will be a picture of my heart (my old one cut up for biopsy) near the end of this blog. Please be warned, if that stuff bothers you...

My day...perfect. I didn't do much, but what I did do was snuggle with my Mommy for hours and then nap cozily in my crib. My renal numbers look good. Changed the patch. The care team has a bunch of things going on and planned for me all week. Today we weaned the fentanyl down some today and i seem to be tolerating it well. I also went down on my O2 settings again and am feeling good about it. Tomorrow I have an Echocardiogram planned mid-day to look at my heart and check that clot in my heart, too. Please pray that the clot is breaking up safely and that it has not mobilized. Also, pray that my new heart's function is still doing well. Then, Thursday is a big day. I finally heard back from ENT and they picked that day for my vocal cord repair. Well, hopefully...they will first take a good look and decide on the best course of action. I am hoping the collagen injection will do the trick and I wont have to have it surgically repaired. If all goes well and as planned, I can try out NG feeds again and work towards normal eating someday. Plus, I will sleep better, be much more comfortable and be safer with it repaired. So...big things! Next week will be an MRI to reevaluate the bleeding issue in my head. Hopefully that has dissipated and I am okay. Safe. The care team thinks that I'll probably continue to have my Lovenox (enoxaparin sodium is an anticoagulant medication) injections daily for at least a few months; i'll likely go home with them for a while to be safe. Hoping and praying for the best. I feel really good this week so far though. I love feeling good. I smile so much, play and am just feeling so much more like a normal baby. Once you see my old heart, below, you will understand how much i needed my new heart. My donor gave me something so special; I needed it 100% to survive. 

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So the heart picture below is a biopsy on my heart...specifically the left side of my heart. The top picture shows mainly my left ventricle. The white tissue is all scaring. The bottom picture on the left is the top of my heart and the right is the bottom of the left side of my heart (the tube is a piece of tube left from my Berlin Heart LVAD. So, like I said, my old heart was in rough, rough shape. If you can imagine this...you smile, okay...when you smile you use muscles to make the face shape. It's easy, right? Now, imagine your lips and face are covered in deep thick scars. Now, try to smile...not so easy. That is what my old heart was going thru. It could not...literally, could not do the work. Now...where did the scars come from? Well...the heart is a very complex organ, but to be very vague...my heart did not get enough blood right away after I was born, it had electrical issues, it went through ECMO (twice) and a Berlin Heart LVAD. My heart went thru hell. It got so beat up that it couldn't recover. No amount of time would be able to fix all of that damage. So, we feel so much better seeing this, getting my diagnosis from the biopsy for all of my problems and now moving on to my future as a transplant recipient knowing this was the right decision for me. Coronary Ostial Stenosis is a very rare condition of unknown etiology (cause). Studies say that only between 0.13 and 2.7% of the population are effected by it and usually adults. It happened to me though and it basically killed my heart by starving it of blood and in turn starting an uncontrolled chain of events. I fought thru all of the adversities I faced and actually lived thru it. Beat it. Now...I am here and thriving! This picture is an odd one to see, but to my family and I it means we can breath lighter. We are thankful. Good Night. -Heath

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8/6/18 - Waiting On ENT

It's been a great Monday. I think tonight should just be a short blog with a few quick updates...

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First, my Grandma was here today. She held me a while and we caught up. She hadn't seen me since my heart transplant and was happy to see how well I was feeling today. I enjoyed to visit. She brought me a bear. His name is Jasper. He's got a different texture to his fur compared to my other friends. I like it. Anyhoo, when we were done, I went back to my crib for a nap. I actually fell asleep quickly and slept the rest of the afternoon sound in my Boppy. I think the socks helped? Ha, ha. I actually like socks on. They keep my toes cozy. Socks are toe sleeping bags. He, he, he. I slept stretched out and spread eagle today. It was fantastic. 

Today the care team decreased my Fetynl drip and are watching my renal numbers. They appear to be low, but we hope it's still a patch issue. They will hopefully get on top of it tonight. Speaking of getting on top of things...ENT. The Ear, Nose & Throat people here are hopefully coming to take a peek at my vocal cord situation this week. We still haven't heard back, but I guess there is an un-dated Bronchoscopy scheduled for me? Mom and Dad really want this taken care of sooner than later. The care team does everything in the order they feel is best, but Mom is nervous they will just "settle" on sending me home with an NJ type feeding tube for convenience. That's not what they would do, but it's still a thought in my parents heads. Hopefully they stop putting off fixing it and at least try something. Once it's fixed up, I can try getting feeds in my tummy again and that is SO very important to me and my familly before I go home. It's more normal...you know? So, we hope that gets rolling this week. 

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I think that's really all for updates today. Please continue to pray for me, my family, my donor family and send little extra prayers to my girlfriend down the hall. I'm going to rest until my girlfriend gets her for the night. She'll read me some of my new books from my new friends. One is called "The Wish" and it's a very special book for me. Talk tomorrow. Good Night. -Heath

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8/5/18 - More Family Time
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I was uber cute today in my shampoo cap. I had a second bath today to get fresh after sweating myself up in a happy smile dance party with my Dad and visitors. Yes! More visitors today! This is the most I have had for visitors since the first week of my life. Only at that time, they thought they were telling me good-bye forever. So glad this was a visit under better circumstances! I am a miracle. That's what everyone keeps saying. Anyhow, my great Aunt and Uncle from my Mom's side came to see me today. They brought me a blue bunny that I love. It's nice to feel. You all know how much I love to feel fuzzy things. Anyhow, they stayed a long while and we had good talks. I danced to my music and showed them how I can kick out my feet and swing my arms. We talked about home and my cousins. About how much fun it will be to play with them, since they are mostly little, like me. We can all grow up together! It's great! I worked myself up into a sweat from playing so hard while they were here. Mom gave me a quick once over and washed my hair. Sometimes, not always, we use the big person shampoo caps that my girlfriends heat up for me. They are so warm and make me sleepy. My hair always comes out soft and clean. 

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I dozed off after my bath. I had a nice day, but today started out with a fever. I am not sure just yet why or what from, but the care team is tracking it. My renal numbers were also lower. They aren't taking any extreme measures to correct these numbers just yet, but if anything changes they will go for it. Hoping and praying it's nothing to be concerned about and that maybe it's just because of my teeth coming in that I'm springing a fever? That would be too easy though...ugh. Anyhow, good day. Great familly time. Lots of smiles. I am wiped out! Good Night. Talk tomorrow. -Heath

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8/4/18 - My Head

Up in the Bumbo, in front of my Dad today...He was SO proud of me! He helped with my head and I sat and talked with him. I like to talk with my hands, like he does. We say something and wave our hands just because. I can't make sounds yet, but I use my hands and eyebrows to say what I need too and Dad usually understands. He helped my dinosaur Troy come over and visit with me, too. Troy's teeth looked pretty white today. That's because he was naughty when I left my room to go have my MRI this morning. He was trying to eat my Moose while I was gone, I told him that was bad. He's a work in progress. Dinosaurs are not good pets, but I still like him. He keeps the scary things away from my crib while I sleep. 

I had a busy morning. First, a nap, then down to have an MRI on my head. They want to keep a look out for bleeding issues. I'm on the anticoagulant medicine and since last time I was on it, I had bleeding in my head, they are being very cautious this time. Which is good. When I got back to my room from that I had an ultrasound on my head, too. The care team is hoping they can do ultrasounds in place of MRI's for now. So they did one today to see if they could see the same things the MRI showed. I don't know the results of that just yet. I'll let you know later. I think the bleeding is still under control. Otherwise, they probably would have told my Mom and Dad. You can see my brain on the screen in the picture below. It's pretty big, I'm smart...he, he, he! The tech that does the ultrasound uses the wand on the top of my head because there is still a soft spot where my skull is growing and it's an easy spot to see thru. They can usually get a nice image because of that. It's kind of neat, but I wish I didn't have any bleeding or issues that they needed to do all this for. I am a very good boy for all the medical stuff though. I hold still and am patient. I also got to be on regular oxygen thru a normal nose cannula today for my trip to have the MRI and since I was doing good and my numbers were still good, they said I could stay on just the regular cannula! So awesome! Less stuff on my face. 

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You may have noticed the outfit change...two words for that: Huge Blowout! The whole bed, up my back, on my clothes, on my pillow, in my hair. Mom and Dad were right there the whole time and never even knew until Mom smelt something funny and thought...oh no. I like to challenge their parenting skills. Prepping them for when I come home. We may have missed out on a lot as a family, but we are excited to catch up! Well, kind of...yuck! Mom and Dad teamed up and got me cleaned up, bathed and clean. Then, I had visitors!

My cousins came to see me! We had a great visit. My cousin even smooched my forehead and I thought that was so sweet. I'll see them again very soon when I get home and it's safe to. I was so happy to hear a new voice though. They are my family and we've never even met! Isn't that weird? Mom and Dad have never wanted too many visitors for me because my condition has been so unstable, but now, within reason and in the safety of my hospital room, some of my family can meet me for the first time ever. We figure it's much safer to visit here and now, than when I get home. I need to be a little secluded for a while, when I first get home, until I'm stronger. It's sad to Mom that I am almost 6 months old and just meeting them, but we can't think about that stuff too much. Can't change anything, right? I fell asleep when they were about done visiting and ended up sleeping the rest of the afternoon. I needed a little nap after a busy morning. It was a nice day. Thank you for all the messages last night! thank you for continuing to pray for me, my family and my donor family. We all need and appreciate the good vibes. Good Night. -Heath

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8/3/18 - My First Bumbo Experience
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I think that today was possible one of or the best day of my life so far. Not in that something wonderful happened, like getting my heart gift, but in that I just had that nice of a day. It was wonderful. Uneventful, peaceful and happy. I haven't really had that many good days to base an opinion off of, but a good day, is a good day. I spent the day doing stuff I wanted to do. I was wide awake and happy. I felt good, felt clean, felt comfortable. Just all good feelings. The clot thing is in our minds, but besides that, I am recovering from my heart surgery very well. Today, i started with a short nap on my tummy, visiting with my girlfriends, a quick check up and some play time. Mom came later and first she helped me change into something fresh and clean. I picked stripes. Dad likes when I wear stripes. I looked good. 

Then, we played a little bit. I stretched out on the bed super tall and long! I am longer than the blankets now! Over 2' tall! My dietitian came to see me and said that as far as growth goes, I am right where I need to be. Compared to other babies my age, I am in the right spot. So, that was wonderful news to here. My therapist, the OT one, said that developmentally I am doing very well considering all of my adversities. I am a little behind on leg strength and almost there with holding my head up. We are working hard on things now to catch me up. Today, I sat up in the tumble form chair for a while when therapy was here working with me. It's a big blue chair that helps me gradually sit more up and gain head control. I sometimes like it and sometimes don't. I'm still kind of little for it, I think? It went well today, though. I sat in my Bumbo chair today, too and I liked that much more. That chair is so comfy! I like how my feet dangle a little. I think in a week or so, if i keep working hard, I might be able to hold my head up all by myself and sit in that chair without someone helping. It will be great! I can see so much more when I'm sitting up and I can breath really good, too.

My bum vocal cord doesn't like when I lay flat. Hoping they will fix that next week. I think that's the plan. My doctor stopped to see me today and he just chatted about that stuff. He also rubbed my head. I like when he rubs my head. Mom and I also got some snuggles in today. I didn't nap with her, we visited though while she held me close to her. I like to reach out and touch her and poke. I smile at her and kick my legs out excitedly. We sat with each other a long, long time today before i went back to my crib and she had to go. I looked around a minute for her to make sure she left and then went to sleep in my Boppy pillow. Best. Day. Yet. Thank you for contunuing your prayers. Good Night -Heath

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8/2/18 - Take The Bad With The Good
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The Good: We had a great snuggle session today; Mom and I. It was a little rushed. Driving 5hrs every day to come see me takes a lot of time and she had to leave to go back home sooner than she or I wanted today. We made the most of the time we had, though. She never ever misses a day with me. We sat up in the big recliner chair for the whole visit. It was very, very nice. We both love snuggles. Dad and I will defiantly have to try to snuggle on the weekend. I am awake more during the day and sleeping more at nights now, so I have much more daytime energy for activities. I like sitting up a lot. I sat on Mom's lap and we looked at each other while she sang to me. I had a lot of fun. I really like when she sings to me. I raise my eyebrows and smile so she knows. We didn't read anything today. Just sat, snuggled and played. I was feeling her nose today. It's a lot different than mine. I also found the pretty necklace she wears everyday, the one Dad gave her a long time ago. She said I had to be careful not to pull too hard on it or it would break. So, I just touched the shiny dangley part with my fingers for a while. Then, I was feeling frisky and all of a sudden, she dipped me! She'd never done that before, but it made me giggle. She dipped me back again and then back up again...I giggled again. I don't know if I've ever giggled before? It was wonderful. I always give the biggest smiles I can when I am happy or having fun, giggle or not. Everyone of my girlfriends loves when I smile and they all give me extra attention then. In fact, while I sit with Mommy, there are cameras in my room on the ceiling that girlfriends and bro-dudes can watch me on. It sounds creepy? Anyhoo, they like to see me play. They usually tell Mom they saw me on the camera and want to tell her how much they loved my smiles or that they were proud of me for sitting up so good. I think I'm doing a good job...sitting up and learning new things. Do you think so? Let me know when you write to me next. What should I try to learn next?

The Bad: Today, I had that Echocardiogram. It didn't really go exactly how Mom and Dad hoped it would. It's a little confusing. So, I have a small clot showing up on the imaging in my heart. It's not as scary as the big Aorta one from before (the one that has seemingly dissipated), but it's a clot and is in a part of my heart that pumps blood to my brain. So, if this clot moves, it goes to my brain. I could have issues arise from that, if it were to happen, and could even have a potential stroke. Mom and Dad are now very worried, again. The care team did an emergency/just-in-case MRI of my brain today to check for bleeding and see if it was safe to start me back onto an anti-coagulant medicine again to help break down the clot. So, my MRI was looking okay and they went ahead and started the medicine. We kind of thought that this was done and over, the whole clot/stroke/brain bleeding scary situation stuff, now that I have a new heart...apparently it is not. It stinks. It's not fun worrying. I think the care team has a good management plan for this all though. Please pray very hard this clot goes away and that it doesn't travel to my brain. The care team will be doing everything they can to help me. They did say that, when looking back at my previous Echocardiogram pictures from before, they looked closer and see this same clot was possibly there before. In which case, it now looks smaller (if it's the same clot). So, now we do what we can and we wait. Again. I will get another MRI tomorrow to keep checking. Maybe an Echocardiogram again, too? Another scare...ugh.

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Oh! Before I go, I wanted to share with you that today was the first day I have ever worn a regular onsie too! It might seem silly, but I've only ever gotten to where snap up outfits. So, this was very exciting! Do you like my outfit? Everyone says it suits me...because I am handsome. He, he. Okay. I have got to go to sleep so I can play tomorrow. Good night. Please continue your prayers for me, my family and my donor family. -Heath

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8/1/18 - Practice Makes Perfect

Therapy helped me lay onto my front side again today. They call this prone. Laying prone. I kinda' do it? I was very comfortable, again, like this today. I had my knees hiked up under me and my arms tucked, too. I sucked on my fingers and snoozed a long time. Then, today, I was awake! So, awake! Since sleeping well last night, I had a lot of energy to burn today. I decided to spend it on practicing my skills. I have lots of things to learn, you see? All of the baby stuff I missed out on; being so sick. So, today I practiced kicking my feet and pushing. Mom would put her hand under my foot and I would push with all my might to push her hand back. I did really good. I pushed too hard a couple times and it made me fart. We laughed. It was great. It's all fun and games until I poop my pants though...he, he, he. Then, i practiced batting my mobile some. I have very good aim now. Sometimes I reach out and just tap the critters lightly so they spin. Other times, I swing fast and hard and make the whole mobile rock. I am very strong. Later, I sat with my Mommy. We, well she, had plans to snuggle, but I had my own plans. It was time to practice holding my head up. I noodled my way down, out of her cuddling position and she had to help me sit up. I sat up and we talked for a while and then I was back to business practicing. I can still hold my head up pretty good! It made me happy to know I still have the strength after everything. I can hold it strait, tip it side to side, turn it very good side to side and make it go up n' down. Sometimes, while I'm putting my head down and my chin to my chest, Mom is usually holding me and making sure I don't jerk my neck and when she isn't looking I'll lick her hand or suck on her knuckle. She thinks it is so funny! We laugh so hard. She also helped me lean my torso back and forth, side to side and stretch my shoulders out. I sat up in the chair with her for a good hour. Then, I went back to my crib and my Boppy pillow because we had company come!

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I had the best surprise today! My favorite horsey at home, his name is Bo, has lots of friends at a horsey hospital not to far from my human hospital here. One of those friends, my newest girlfriend, came to see me today and she brought lots of presents and treats, too. The treats were for my girlfriends and bro-dudes here. She said that everyone at Bo's hospital made treats to share. I thought that was the nicest thing I have ever heard. Treats are supposed to be a reward for doing good things. Dad says Bo gets horsey treats when he is good, too. So that must mean my friends think the care team is doing a good job taking care of me if they are bringing them treats? Hmm...anyhow, I love my new girlfriend. She has a daughter who wrote me a nice letter and wanted me to have some pretty kool little finger puppets she thought I'd like. They are very special to me and I will keep them forever. She also delivered a donation from the softball team that played for me; the one with the pink shirts that I posted a picture of a little while back. That was so very kind and sweet of them to do that for me. She also gave me a card and some really nice artwork from my other new friends. Let me just say that I loved the art! I loved the swirly colors from the finger paintings the best. Thank you for those! If I hadn't moved rooms, my special wall could still be up and I would have added them to it. Mom will put them in my art book at home for me to look thru though. It was a wonderful visit. I'm so happy to know and feel how much everyone cares about me. I can't wait to see everyone outside of my hospital room someday very soon! Such a wonderful day though. 

Well, other than all of that, I didn't have much else for updates today. The IV came out of my foot finally and I can wear socks and clothes again! Yay! I got to switch to the high flow O2 cannulas in my nose instead of the CPAP settings one. I also went to have a GI test done today and so far it looks like my gut is pretty healthy. So, hopfully the care team will get this vocal cord snazzed up and I can start getting feeds into my tummy and eventually learn to eat on my own! Happy day! Hugs and love! Thank you all for supporting and praying for me. -Heath

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7/31/18 - Shedding Layers

A new friend of mine came into my life when my journey came to CHW. Her two babies both underwent heart surgeries here and she has be a true God-sent to my family during all of my adversities. They sent me a very special gift today...a Build-a-bear Bear. He is fluffy, fuzzy and soft and wears a surgeon outfit. I love him so much! A new snuggle buddy. When I squeezed him, his heart started beating...just like mine. A very special gift that I will forever cherish. A long time ago and now again, this friend told my Mom something she says is one of the most beautiful ways she's heard this all put into words...this new friend told her, when talking about me, that "...he will begin shedding his layers and all that will be left is your baby...". She meant that I'd shed my medical devices, medicines, tubes, cords...all of it and what will be left in the end is just me; Heath. It really is beautiful, Mom was right. It's beautiful to know that in the end none of this is permanent and I am still me. My layers change, but I am still little Heath under it all. I can't wait to shed my layers and be free of it all. I lost another layer today, acutally. Bye, bye head patch! Yesterday, I got rid of the arterial line in my hand, too. 

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So, now an update on me. I am about 13lbs now. I am starting to puff up because of the steroids I am on for my transplant. There's something called Prednisone that will make me moon-faced, they call it. Prednisone is a man-made steroid that is used to suppress the immune system and help with inflammation...but it makes me puffy? I don't have to take it forever, just until my body is okay with my new heart. So, puffy Heath for a while. Can't change it. I am feeling well. My new heart is happy and doing it's job. The doctors say they are liking the results and my numbers and all. They said that the new heart is maybe a little "stiffer" than they'd like, but not to worry about it right now. They will do another Echocardiogram Thursday to check on it. My lungs seem to be doing better. They still have me on O2, but it's not too much. I am weaning off my medicines thru the IV's and switching over to getting things into my tummy instead. This will be necessary for going home someday. I am almost up to full feeds now too. I still get them thru an NJ, which is not ideal. I need to get my paralyzed right vocal cord fixed before they start switching my feeds back to my tummy. It's too much of a risk of me aspirating now, with the bad vocal cord, to switch. Hopefully, in a couple weeks when I go to do my first Cath. Lab, the team will also take that opportunity to go ahead and fix my vocal cord. I think they plan to try to inject it with something similar to lip filler stuff? I guess it will theoretically help it. So, I hope it's that easy of a fix...otherwise there will be a surgery to repair it in my near future. Ugh. A Cath. Lab appointment is apparently when they will check my heart for signs of rejection? I've never done it before, so we don't understand how all that works yet. I think the care team plans to do that in a couple weeks. Hopefully it's no big deal. I'm sure they will fill us in more about what the appointment entails before hand. I could possible go home in as little as a month, after the Cath. Lab for sure, but it's completely overwhelming and exciting to think about going home! Wow! I have a lot of hard work to do first though. I have to get my medicines all orally, i have to be able to be fed normally (they sometimes send babies like me home with an NG tube if it's not going well with normal feeds, just so I get the right nutrition), and I have to be strong; my heart has to be okay. So, I will be working super hard, over-time for the next few weeks to get strong! 

Also, today I laid onto my tummy on my Boppy...well, kind-of. I was feeling very restless for a while before we tried this. I am weaning down off of medicines right now and it's not easy...I'm an opioid addict; no joking about it. So, the Methadone that I get to help me get thru withdrawls, etc...it just isn't the same feeling. It's not something I would wish on anyone. I am doing okay though. I'm very tough and brave. So...anyhow, I was restless and my Mom and girlfriend thought I could try a new position. I had my knees tucked up under me and my arms out over the Boppy, resting my head in the middle. Out like a light in 30secs! It was fantastic! I slept for a good 45 mins. like that. I'm excited to try it again soon. I had a therapy session after I woke up. As much as she was excited for me to get some tummy time, I guess that because I have pacer wires still (non-functioning), the care team may frown on tummy time. So, we are going to ask about that just to be sure. I think it will be okay though. My numbers were all very good for the whole time I was on my tummy. I'm so glad. Hoping for lots of new experiences soon! Please continue to pray for me, my family, my donor family and my little sick girlfriend down the hall. Hugs! -Heath

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7/30/18 - The Thump
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Today, Mom and I just sat together. Often, since getting my transplant, she sits next to my crib and rests her hand on my chest. She's feeling my beating heart...my donor's beating heart. We both close our eyes together and just feel it. The "thump", "thump", "thump", "thump" of it. The greatest feeling, greatest sound in the world is the rhythmic "thump" it makes. Today we were thankful. I lay peacefully sleeping in my hospital crib. The beeps and alarms of my room silenced and we only heard the "thump". My life and my donor's life...anew, whole, one. 

To MY donor family, where ever you may be in our country...thank you will never be enough. I get to lay here peacefully today because of your selfless, courageous and generous decisions. The heart, your child's heart, my heart...this heart. It is beating, again, now in my chest. The gift that your child so graciously, bravely gave to me has given me my second chance at life. Your child's heart is beating again to give me my life. What an absolutely incredible thing your family has done. Donated. I know you're hurting right now, still, after a week. We are thinking of you and pray for you every night. We pray for your peace in what my family can only imagine was a decision no parent wants to make. You will get thru this time in your lives with grace. There is never a time during the day that you aren't being thought of by my family...now and forever, we will send our thanks and love to watch over you. I don't know if I will ever know or meet you, but I hope you can feel this letter to you. I hope you can feel that the little boy that your child saved is thankful beyond what is possible to describe. Your child gave me life. There is no bigger gift. I promise to be a good boy. To make you proud and do good things in this world. I will make a difference in the lives of others I meet and do what I can to pay-it-forward someday when I am big enough, too. I won't let the life you gave me go to waste. Each opportunity I get in life, every moment, every single memory I make...will be because of you. My donor. My donor family. Thank you. -Heath

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7/29/18 - The Golf Outing

Okay, I am having a good day. Little bit growly, lot a bit tired...so I napped all afternoon. No big news...that is good! And about the benefit...Well, I have to say WOW! You are all absolutely the best friends and family a little boy like me could ever ask for! Thank you from the bottom of my new little heart for coming out to support me yesterday at the golf outing. Mom and Dad told me all about it today and it sounds like it was fantastic. I wish I could have been there, but I was there in spirit. Mom put a board up with my pictures for everyone to look at. Most of you that came, follow my blog here and know what I look like, but when you're this handsome it's to be expected that people will want a second look. 

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The outing went good. It was a little unorganized in the beginning, i guess, but everyone was very kind and patient with us as we got everyone registered to golf. We had several four person teams head out to the 18 hole "The Oaks" course at Christmas Mountain Ski & Golf Resort. It's where most of Mom's family worked when they were young and is right down the road from where my home is. The golfers started around 11am and everyone was gone by 8pm. Mom got there late, from coming to see me first, and she went around on the golf course with my three cousins (all girls...oh boy!) on a golf cart to take lots of pictures. They tried to stop and visit with everyone and tell them thank you. My family was there from Mom and Dad's side, they all golfed and helped out all day. Mom and Dad said it was great to meet people that follow my story, but are new to our lives. The people there supporting me were wonderful company. They are all excited to meet me when I come home. We will throw a big celebration party and invite everyone. Promise! Anyhow, then everyone got to have lunch on the turn, food afterwards, Dad did some raffles and a big silent auction after the golfing was done. There were a lot of laughs. Someone was almost in tears I guess because the raffle he won was something very special to him. That made me happy to hear someone was that happy out supporting me. Mom and Dad got lots of hugs and prayers to give to me. I hear it was a fun filled, enjoyable, sunny day; the weather was perfect. About 75F and not humid. The sun was shining bright. It would have been hard to ask for a better day. We are so thankful for that. The turnout was great and lots of people I had no idea cared so much about me, were there supporting me and helping out. My family and I are so grateful and humbled. There are a bunch of pictures and we have a few shirts left over that will be up on my shirt page on here probably tomorrow. Hugs and Love! -Heath

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