4/8/19 - 4/15/19 - Having A Ball

It was quite the week! Two Milwaukee trips was A LOT for me, but we got it done. Mind you, that’s ten hours of driving in the car for two appointments! Monday, we went down to my Children’s hospital for my general check up with the team. I had labs drawn and an Echocardiogram on my heart, as usual. It all came back clean and my numbers were great. I look and feel good. I gained about a pound and am now 2’ 6” tall! It’s pretty kool! My family, and me too, just can’t wait until I can finally walk. Anyhow, during my appointment, my Mom pointed out something that has been bothering her a little on my neck…I had ECMO cannulas in my neck on the right side when I was on ECMO the first time, the day I was born…anyhow, when they removed the sewn in cannulas, they never reconnected the vein (or artery?) that was used because it was damaged. That is somewhat normal procedure for ECMO recovery and most times the veins just grow new and find new paths to feed blood to the areas needed there (like your brain!). Well, my veins have regrown and are doing their thing and feeding blood to my head, but they are HUGE! Like, really pronounced on my neck (especially when I cry). When I cry, they pop right out in a big bulge. So, Mom asked the team about this and they had a PA for my heart surgeon come in and look at me and he showed video of me to him. He asked me to come in for an extra appointment on Wednesday to check into it better. Ugh…another scary thing to worry about we thought…right?! So, anyways, Wednesday we got to my hospital again and I went strait to Radiology. They did a thorough ultrasound of the area and sent me upstairs to the Herma Heart institute to meet with my heart surgeon so he could physically examine me, too. He did and he felt concerned; thinking that possibly there is some herniated lung tissue that is pushing the area out when I’m upset and making the veins pop up? So, he sent me back down to Radiology for something called a Fluoroscopy (an imaging technique that uses X-rays to obtain real-time moving images of the interior of an object…or in my case, my lung). The pictures came back and it didn’t appear that there is a hernia, so that was good, but my doctor still has some concerns about the area. So, long story short, I think the Transplant team is discussing bumping up my 6 month Cath Lab (the big heart surgery checkup ordeal) to a sooner date than our previously planned July date. Waiting for more information on that…Wheew…

Other than hospital stuff, I started some new thing this week. I now yell, at the top of my lungs, when I’m hungry. Mom says I am demanding. I say I am clear in what I want. Ha, ha. I also have really went to talking. I feel like I need to speak my mind about everything. Mad, Happy, Sad, Excited…all of it calls for some sort of vocalization of my feelings. I’m learning all kinds of new sounds in the mean while. Also, this week I have become more and more active. I still don’t crawl but I an get around pretty quickly but butt lifting and rolling. I also stand up in my walker chair. Just for a few seconds at a time, but I am definitely practicing and getting some leg strength. I am doing some tummy time every day still. Not getting up on my arms at all yet. I just don’t have any interest. I do roll all over though. My arms are strong, but I don’t like tummy time in general so I don’t try. Mom still makes me do it though. I am sitting better and better all the time. my core strength has improved so much! Mom usually puts “crash” pillows on my sides just in case I decide to be lazy. This week, too, I learned how to hold my little inside doggy, Lily’s, tennis ball and tease her. So now, I take her ball, or she gives it to me, and i hid it or hold it until she barks at me. It’s really really fun and I laugh so hard! I love animals. -Heath

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4/1/19 - 4/7/19 - Spring!

I don’t have too much to say about the week…it was just really good and i was a bum. I spent time outside again. Mom and I went up and down our long driveway with the dogs. I got to go closer to the horses for the first time while Mom filled their water tanks. They thought my stroller was a little weird and kind of scary, so they snorted at it when I came closer to the fences. Mom said they are just getting used to me and my things. I’m new to them. They are very, very interest in me, though. I watched them from a ways back, because I still shouldn’t really be around those kind of germs just yet. I was close enough to see them good this time though. They are big and so funny to watch. Mommies favorite horsey, Bo, was really funny and looking thru the fences at me like he wanted a pet, but Mom just gave him one for me. That will be okay for now, but this summer, I am going to pet them all a bunch! We are still not quite sure how my “germ rules” will really work out with our lifestyle. It’s kind of a scary thing yet. Like, I shouldn’t be around people germs mostly (like flu, cold, nasty stuff…), but when it comes to everyday germs, I’m not sure when those germs are safer as my heart transplant journey continues? The Tx team always says that I can live a normal life, more-so after I’ve had my heart at least a year, but those people are all from the city and our life is much different. I just hope we do things right and that I am safe in “my world”.. It’s so complicated, yet not complicated at all. Day by day is what we keep preaching. So, anyhow…what else? No teeth! Still no teeth, still teething like crazy. Um? I’m all healed up from surgery now. And? I am sitting good still. Better all the time. That’s about all for my week. Mom and I are going to Milwaukee for a check up tomorrow. Hoping things still look good with my heart and medicine levels and all of that! Please keep me in your prayers still. We pray every night for my continued health, for my donor family and for all the things the future will hopefully bring. Good NIght!

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3/23/19 - 3/31/19 - Surgery # Gazillion

I’ve definitely had my share of surgeries, procedures, etc…in my short life so far. Monday morning, we went to my hospital in Milwaukee again for another one. My first, what they call, “elective” procedure. Mom and I weren’t sure this should even go in my blog, but who cares honestly? I spent the whole week recovering from getting my boy stuff did. Ha, ha. Well, not Ha, ha at all actually. It was a little rough. We went in for what was supposed to be elective though and the surgery team said that it was necessary. That made Mom and Dad feel better about putting me thru it, at least. I had to wait this long (13 months), to have it done and they didn’t want me to get too big. At least it will be another thing I don’t remember. Anyhow, I had that surgery on Monday. They had to put me under anesthesia and all that jazz. I have recovered really well and feel pretty good now on Sunday. We all hope and pray I don’t have any more surgeries or anything of the sort for a very long time now! The only thing that could possibly come up right now, expectedly, would maybe be a vocal cord injection again. But, for now, my ENT doctor thinks I’m doing well without it. Remember, I have that paralyzed right vocal cord from my first time on ECMO? Well, they always worried it would effect my swallowing and voice. I seem to be doing great eating and my voice is rough, but it works. Just ask my Mom! I spent the week recovering, a little sore and pretty cranky. Why wouldn’t I be! Healing and teething at the same time is not fun. I got thru though. Lot’s of sitting, hanging out quietly as Mom could keep me, sitting on the floor playing gently and not much else (side note; I am sitting really good now). The doctors said to take it easy for a couple weeks. Not much horse-play. I have been a little wild, of course, but I am one and I have lots of energy to harness!

My Daddy is taking a big fishing trip soon, so we did some things to get ready for that this week. I also spent a bunch of time outside. My puppies are getting so big! They run and bark and are so fun to watch. I went to the farm a lot this week and helped my Grandpa and Dad. Well, I more-so watched from a little distance with Mom (so i didn’t expose myself to anything…I still need some more time), but I helped in spirit. We had to clean barns and sort cattle. The little babies from last year got to go in the big pen with their brothers and sisters and were so spunky! They bucked around in the shavings and it made me laugh. I also got to help my Mom with some shop office work. I’m a big helper. I think I fell asleep in my Grandpa’s “Boss” chair too many times this week though, because I don’t remember doing to much else. I have become a messy eater. Messier than normal. I get distracted and play. Before you know it, I have food in my hair! I did try some new stuff this week though! I tried eating a “hard” food. Mom brought some rice/banana cracker things home for me to try and I like them! I still don’t have any teeth, but I gum the cracker and it breaks up and kind of dissolves in my mouth safely. So, they are new and yummy and I am really enjoying the new texture. I also had me a yummy french fry from Culver’s the other night. Dad gave me it to chew on. He also put some ranch on it. My favorite! I love ranch. I also love most dairy stuff…especially morning yogurt. I can chow down a whole container by myself. Mom doesn’t usually let me though; it might upset my stomach. I eat a lot guys! Growing boy here. Hungry and growing. I think that’s all my week really consisted of? I am doing well. My next general/heart check up is on April 8th, so we will have to see if things are looking good still. Always praying so hard for my health. Mom was looking back at my blog post from today, a year ago, and it said that I got a bath and wasn’t feeling too bad. I had to wait all week for a real bath, this week, while i recovered, but tomorrow I can have one! Can’t wait. I love baths now. Okay, well…I’m going to bed. Hope you’re all doing great and thank you for still caring about my journey; about me. I still appreciate the thoughts and prayers. Things are definitely way better now, but I still have so much to worry about every day. Getting bigger and stronger though! -Heath

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3/16/19 - 3/22/19 - Fresh Air

Something that I have never taken for granted is fresh air. Even when I was still admitted in the hospital, that first time outside was so special and I’ve always since, appreciated the fresh outside air. There is nothing like it. You breathe it in and it just fills your lungs with all kinds of good feelings and smiles just magically happen. I love being outside. I’ve spent alot of time outside this week, the most I even have been out before. It’s been really nice. Even though it’s not quite warm enough for me to stay out too long, it’s been really nice to get out every day. We, Mom and I and sometimes Dad, spend alot of time at my Grandpa’s house. We have a really special farm and we are blessed to be able to spend lots of time together as a family every day. I really enjoy hanging out in the shop office and watching cartoons in the morning, getting outside to see the tractors running and seeing the animals. I can’t get too up close and personal with our animals just yet, but someday, when I’m stronger and my heart is safer, I will be sure to get out and help feed and care for everyone with my family. I got to sit in the Bobcat for the first time this week on Dad’s lap. Mom took a picture of Grandpa and Dad in the bucket with me for our memories book. It’s one of my favorites. I love tractors and trucks. I liked getting to be so close to one for the first time. It was so cold before, that I couldn’t really see one up close. It was so cool and made me smile. Of course I still had my blankie along!

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I got to go for a walk with the dogs outside today, down the driveway. It was so funny to watch them run and be silly. They made me laugh so many times. I think they all like me. They came and kissed my shoes and checked on me several times during our walk. My doggy Mack even brought his big red ball to me, but he didn’t know I’m not quite big enough to kick it for him. Mom did for me, though, and he was really happy. We walked up and down the driveway, i was in my stroller, a couple times. I checked out the horses, who Mom says were being crazy, and I looked at the big trees on both sides of me. I liked the sun on my face, but it was a tiny bit windy and I don’t like that much. I wore my warm hat, though, so I was cozy. When the weather gets warmer, the driveway will get dry and we will be able to go all the way down it. It’s very very long, so our walks will be alot of fun. Hopefully I will learn to walk this summer, myself, and will get to run down the driveway before next winter! Also, my cousins next door have a toys truck that I might get a ride in down the driveway at some point Mom said. I’m excited for all kinds of fun stuff coming up. Feeling more like a normal little boy lately. That’s really nice for me and for my parents, too, I think. It’s hard when you have to worry about health stuff all the time, so it’s nice to kind of forget and live a little.

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We had a really nice dinner at the farm for St. Patricks day and I tried some cabbage. It was ok. I prefer my cooked carrots much more, though. It was fun to see my uncles and to see my grandma’s kitties. I like when we are all together. This year is going to be so awesome! -Heath

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3/9/19 - 3/15/19 - The Time Changes?

Wow, that time change has me all mixed up. I woke up early today, which is backwards. I should have been up late? It’s so weird. Mom has been getting me up all week like no change happened and I get my medicine like usual, at 8am. So, I’m not sure why I’m mixed up. I feel great and am doing good, though. It’s really cool to see the snow melt now. I saw it accumulate and now disappear. I can’t wait to get outside more. I’ve already started to! We have been so busy at home doing something called “spring cleaning”. Mom has been decluttering the house, we switched some bedrooms around, I got my own big boy room to share with my sister whose coming in a month, we donated some things to St.Vinny’s and handed down/traded clothes with my cousins. It’s been crazy around here. We got so much done! I usually hand out and read my books to my Mom while she does stuff. I like to watch, too.

I have been very entertaining this week; to my family and to myself. Ha, ha! I am the master of faces right now. I make all kinds of funny faces and sounds. I even said my first word! “DADA” and now I can’t stop saying it. I know what it means, it means my Dad should look when I say it. Mom and Dad were so proud of me! I’m such a chatter box now. I like to talk when I see people, need changed, see animals, feel wind, want attention and especially when I am hungry. When I am hungry, I make sure everyone knows it.

Also, another big deal thing…look at this!! I can sit by myself now. Yep! I’m getting better and better at it. I can even play sitting up now. It’s still not perfect, but I can do it and we are all really really proud and excited about it. -Heath

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3/2/19 - 3/8/19 - Vaccinations

This week was good! Well, for the most part. I had an appointment Friday in Milwaukee and my Tachrolimus level is back up! Yay! It was just barely a tad below where they wanted it, so we increased my dose the tiniest bit and will re-check at my next appointment on the 25th. It was so nice to get good news! In other news, I’m kind of different at my appointments now… So, I started getting a little “stranger danger” lately and really just want my Mommy when I’m not home. I am really comfortable around Mom, Dad and my Grandpa, but I even get a little fussy around the rest of my family, let alone my doctors now. Mom didn’t really notice this change in my behavior until I got to see a couple of my “girlfriends” from the hospital, who stopped to see me one morning after one of my lab draws. They were so happy to see me and I usually love them, but for some reason, I tucked my head and started to cry. This has been happening alot lately. I don’t know when I got so shy, but I sure am. I had a therapy appointment the other day and the people were new and I was so upset that we couldn’t get anything accomplished. I do a little better with men than with women, but still… Everyone keeps saying this is normal. So, we will see. Hopefully it will go away; me feeling this way.

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I went to another appointment and got my vaccinations caught up, too. Who knew it would make for so much drama… So, I can’t get but a few immunizations because of my transplant. I was so little when this all happened, that I didn’t have anything yet. Now, I can’t have any live vaccines. I can and have my shots for Tdap, Influenza, Polio, Hep B, Whooping Cough and a couple others (can’t remember off the top of my head). I just caught up with my “six month” old vaccines. I got four big shots in my thighs. It wasn’t fun. Then two days of fever. Now, I’m back to normal. Anyways, Dad got into discussion about vaccines and we never realized how much controversy there is with the whole vaccination world. School percentages, people who don’t vaccinate at all, people who think people like me who can’t get certain vaccinations are the problem, and a whole bunch of interesting topics. What a crazy ordeal. We did find out that the school I would probably go to someday has a great rate right now, so that was good to know. Not that I’m going to school any time soon. Still interesting.

My cousins stopped and brought my a birthday present since they couldn’t see me for my birthday. These Jammies were part of it and I am so beside myself about these monsters on my knees! How in the world? So crazy. I couldn’t stop looking at them. Oh, by the way! THANK YOU to everyone who sent me birthday gifts in the mail to my PO box! I got some hand me down clothes, birthday cards, some new books about trucks that I love and some really super nice clothes from Angel Ellen. What a bunch of amazing friends you all are to me. I love your letters and cards so much! I really do! -Heath

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2/23/19 - 3/1/19 - Some Changes

Going to make a few changes to the blog updates. Weekly, instead of daily updates. I’m thinking Fridays will be update days. Now that I’m home and things are warming up outside, my family and I don’t spend as much time around the computer…so, it will be much more comfortable to just do weekly updates. Plus, thankfully, I don’t have too much to write about besides my daily adventures. Thank you for allowing me to make this change. We did daily posts for a whole year! Now, for “the rest of the story”…(my Mom hopes you get that phrase).

I had a great 1st Birthday. We ahd plans to have a small party at home with everyone in my family that was feeling healthy and stuff. I was going to smash a cake and all of the silly things people do to celebrate a first birthday, but I was feeling kind of sick, my family members were out of town or ill and it just kind of didn’t work out. It’s really just fine with us. I enjoyed extra kisses and snuggles from my Mom and Dad. We are still chasing my Tachrolimus levels and I had to go to an appointment in Milwaukee to get my labs drawn again. It wasn’t exactly how I’d wanted to start my day, but my levels went up some, so it was a good trip. We are going to switch a couple things and I’m starting to take my Tachrolimus and my Mycophenolate by mouth now, instead of thru my G-tube. I’m doing so good with it. Mom and Dad are really proud of me for being so mature about taking my medicines. The idea, from the team, is that taking my Tachrolimus (mainly) via mouth instead of via tube will help to increase my levels. One, because Tachrolimus likes plastic and it is known to stick to it when given thru the tube and two, because I’m supposed to digest the medicines differently by mouth…quicker? Anyways, I hope this catches me up. I have been feeling sleepy, which is worrisome to Mom, who is constantly worried about hearing the “R” word again someday. So, knowing that my Tachrolimus level (the main medicine that suppresses my immune system so it doesn’t hurt my heart) is low is a scary thing. The transplant team has reassured us that my heart looks to be functioning well and not to be over worried. It’s still hard though.

These are what my new foot and hand prints look like. I have grown so much in a year. Mom said she’s going to make prints of my hands and feet every year to see how much I grow in my scrapbook. It was pretty fun to put my hands in the gooey paint! What else? I tried some new foods this week. I am eating everything in sight! Mom and Dad let me just try things that I’m not quite big enough to have, but can lick. I like Cheetos and pickled beets! YUM! Other than that, this week has been about me and about getting my numbers back together. Talk soon! -Heath

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2/22/19 - One Year Old BIRTHDAY!

Wow! Wow! Wow! I am ONE year old! I mean, when I woke up this morning, I didn’t really feel any different. Everyone was really excited though. I got so many smooches and extra special messages today. I think today was a day for me and family and also for all of you who’ve been with me this whole crazy year? What a year it has been. I was born. I lived. I had a heart transplant. I lived. My friends and family all call me a miracle. Whatever that means? I think it means I’m strong. At least, that’s how I understand it. In my first year in this world, I have been strong. I have been really brave. I have conquered all of my adversities. I have survived! Big time! Everyone is so proud of me and I am proud of me, too. This was the most important year of my life. Wow. I am one!

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2/21/19 - Puppies and Stuff

I have had a great day! The sun is shining and I’ve been wild. I played so hard this morning. Dad was with me while Mom went to work. It was pretty fun. We made funny sounds and did boy stuff. Mom always tells Dad to feed me more breakfast when she leaves. I usually split a yogurt with Mom early in the morning and then about 9am I eat some more with Dad. Today, I was eating and he left me alone for a minute to grab a towel and when he came back to me I got all kinds of apple banana strawberry puree in my hair, on my face and all over the place! It was a blast! I don’t think that he liked my art? Mom got home and gave me a long bath. It was really nice. I was pretty sticky and stinky. Ha, ha! Then, I had to take myself a big nap. I layed in the big bed again and snoozed! I’m teething and growing and that makes me sleepy. I woke up later a total wild man and played again. I also took some time to pet the big doggy in the house. Yes! We brought one of our big labbies inside because she is going to have puppies soon and she needs extra snuggles. So, she had a nice bath and I got to pet her. She has been very interested and wants to be my friend. Mom and dad said I have to be a little careful because my body isn’t really strong yet, so we washed my hands a lot, but it made me so happy. I love animals so much already. That makes my family so excited and happy because we have a bunch of animals. Anyways, tomorrow is the big day guys! I can’t wait to be ONE! -Heath

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2/20/19 - Toe Holes Forever

It’s been a while since I showed you, but I still do it every single day…I stick my toes and fingers thru the holes in my favorite kind of blankies; homemade afghans. During the day, I like to pop my toes thru and just relax half covered and then, during night time, I like to stick my fingers thru the holes. I do that and rub my blankie against my cheeks when I’m tired. Then, I snuggle up really close when I sleep at night. Love my holey blankies…forever! -Heath

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2/19/19 - Tach. Level Drama

I went and got my blood drawn again this morning. Up early, to the hospital, back home…you know the routine. My medicine, the Tachrolimus (my most important anti-rejection medicine), levels are always checked via blood draws. The Tx team wants to see my Tach. level between 8-10 on their scale. Since switching to G and oral feeds and hence switching the way my medicine is absorbed, we have had nothing but trouble trying to get my levels back up. I was as love as 2.7 on the scale, then 3ish, then 4, now today 5…it’s not a good thing. Not only am I risking my body attacking my new heart (rejection), but now the amount of medicine I am getting each day has increased and it’s almost too much. So, this means I may have to start another “add-on” medicine to help my body process the Tachrolimus to meet the desired level on the scale. It’s a very stressful and scary ordeal for Mom, especially. I feel great and everything, but she doesn’t want me to…she worries. Doesn’t want anything to take me away or put me in the hospital. So, every little thing matters a lot. We double checked with my Pharmacy about the formula they are using for my medicine and it seems the same, so that was good. My Tx team is working on a plan to move forward. I will go to the doctor this Saturday for more labs and we hope they come back in range this time. Please pray for that. Thank you. I’m enjoying myself a nice late daytime nap with my puppy in the big bed… -Heath

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2/18/19 - Jammies

I was really excited after my bath today. Not only did I get to have my bath a day late (i usually take baths on Wednesday and Sunday), because Mom was really tired, but I got to put on my new jammies! They are so comfy and are my first set of “big boy” jammies! Mom thought they fit pretty good for 2T. We cuffed the bottoms just so I wouldn’t loose my pants when I was playing. Here are some pictures…I was excited. I told you! Also, we didn’t get it on camera, but tonight before bedtime, Dad was eating some chocolate chip cookies…he always let’s me taste stuff, so he let me taste a cookie. It was the first time I had ever had one and I bit down hard and took a chunk right out of it! Cookie monster!! He, he, he! Mom and Dad didn’t let me keep the chunk, but I slobbered on what was now “my” cookie, for a good minute before they took it away. Yummy! -Heath

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2/17/19 - Shopping With Grandma T

I went out just a short while today. It was snowing, so it wasn’t very busy, and we went with my Grandma T to get new clothes. I have worn mostly hand-me-downs my whole life, and still do, but I was spoiled today for my 1st birthday coming up. Plus, I was really starting to need clothes. I am grown out of most of my hand-me-downs now and needed some bigger sizes. We got a bunch of pants, shirts and my first pair of “big boy” shoes. The shoes are too big still, they are size 4. We found out today that I am a size 3, though. That was good to know. I wore my shoes when I got home and thought they were pretty cool. Mom thought they were cool because they were on sale and only cost about $5. Luckily, too, the store we went to (Carter’s) had a buy one, get two free thing going on and we didn’t spend barely any money. We got all 2T clothes for me! Can you believe I’m already that big? Well, I’m not quite that big yet, I’m more like 18-24m clothes right now, but the 2T’s already fit a little baggy. They will be perfect soon. Mom was looking at the little newborn clothes at the store and thinking back to when I was that little. I couldn’t wear clothes for a very long time because I was hooked up to so much stuff, but it was still the fact that I was that small. It got her all emotional. We had a really nice time getting clothes and visiting. I was so tired when we got home, though, and Mom thought for sure I would nap, but I was a total wild man! I sat iin my walker and played until late tonight. Really nice day. -Heath

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2/16/19 - My 1st Book

Today, Mom started getting the pages of my first book started. This whole first year of my life has been something she and my whole family want to honestly forget, but they also really want me to have the story if I ever choose to read it. So, now that my first birthday is just around the corner, it was time to start piecing the days together into something printable. Mom was extra snuggly to me today, because I guess looking back at everything that happened to me was really tough. I don’t remember anything. I don’t think I will. My family is happy for that. Happy this all happened when I was just little itty bitty. But, avoiding sounding sad, I am really glad that we have all of the days recorded. Someday, who knows, I might really want to know it all. Maybe not? It will be my choice though. -Heath

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2/15/19 - Messy Eater

I concentrated on my eating & drinking “skills” a lot today. It felt like I was eating all day, but it was only a normal amount. I usually eat about four times a day right now. I eat mostly baby food purees, but I love to share a yogurt with Mom at breakfast time. When Mom and Dad are eating, they always let me try new things, too. Last night, I sucked on a piece of pizza…i couldn’t have it, but Dad held it for me. I’ve really been starting to understand eating more now. I never used to open my mouth or try to swallow, I just kind of did it out of instinct or because i had to swallow. Now, though, I open my mouth and kind of “ask” for the spoon and food. I still don’t swallow super well. I take a bite off the spoon and then I stick my thumb into my mouth right away to suck on it and suck the food down in turn. It’s been working for me, but it’s not the correct way to eat. At least I don’t gag about food in my mouth any more! That was always such a big issue. With all my drool from teething, I don’t mind the extra stuff in my mouth anymore.

I get pretty messy when I eat now. I am eating more and for longer, so I get more on my hands and shirt. We always have to change my bib for meal times, but sometimes we have to change my shirt, too. Mom said messy is good in this case because at least meal time is going well now and I’m not upset about eating. It’s a step closer to getting this G tube out. Speaking of steps closer to that, not only have I been starting to enjoy a sippy cup, but for the first time ever, tonight I held and gave myself a sip. It was awesome! I don’t get much out of the cup at one time, but the action of trying to suck on it is such an absolutely huge step forward for me. We mixed a little apple juice with my water to see if I’d like that more than just water and I think I do. It’s interesting. I’ve never been very interested in apple sauce, but apple juice is pretty yummy. I’m still trying it out, so I’ll let you know. -Heath

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2/14/19 - My 1st Hot Valentine's Day Date

Today, for Valentine’s Day, I had a hot date. I don’t know what that means exactly, but Mom and Dad said one of my girlfriends (from when I was inpatient at the hospital) was planning to meet me this morning after my appointment. I couldn’t help but grin ear to ear!

Mom and I left the house around 4:30am and drove to Milwaukee to go to my lab appointment this morning. I had to get my blood drawn again to recheck my medicine levels and things. My Tachrolimus level has been low and, if you have been reading my blogs, you know that it’s been a little headache to try to get back up to where it’s supposed to be. I got my blood drawn and then Mom and I went into the waiting room to give me my medicines for the day and so I could eat before the car ride home. It’s always interesting to us how people stare when Mom busts out syringes full of medicines in public. We can’t help it and I need my medicine on time, so we just do our thing and let people watch. I can’t have medicine before my lab appointment because it will mess up the results and it’s also just too early for them. So, wee got that done, I ate and then she walked into the waiting room…my Valentine! She came up to me and, with Mom’s okay, she scooped me up for a smooch on the cheek. I can’t lie, I got pretty bashful. She put me down so I was more at ease and then talked to me. I was being shy, I’m not sure why really, and covered my face with my blankie. She was really pretty, that was it. Her and Mom talked until I came out of my shell and then we visited like old times. It was the perfect Valentines Day date. Her and I used to spend so many long nights together at the hospital and she’d always be very sweet to me. Mom says she’s sweet on me. I guess girls just can’t resist my cheeks and blue eyes? We all had to go, eventually, and she walked with us down the long hall to the parking area and said goodbye. I don’t know when I’ll see her again, but I hope it’s soon. Mom got her number for me so I can send her pictures sometimes. Later, when we got home, I went with Mom to work and then played with my toys before dozing off early to bed. Hope you all had a wonderful Valentine’s Day, too! -Heath

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2/13/19 - Don't Stop Believin'

I spent a bunch of time at the shop today with my Grandpa and Mom; even Dad stopped in on his way home from town. He and I said “Hi!” to the guys working, he took me for my usual tour, I sat in the “Boss” chair to watch some cartoons and all kinds of fun stuff while Mom got some work done. It was really fun. We listened to some good music, too, and this one song is everyone in the world’s favorite I guess. Well, Grandpa said sometimes it’s over played and you need a break from it, but it’s still kind of like the best anthem ever? Or something like that…It’s call “Don’t Stop Believin’” by Journey. Mom and Grandpa are really into that classic rock stuff and whenever that song comes on, Grandpa always helps me dance a little and we all say it’s my song. Everyone believed in me thru my adversities last year and now I’m home. It’s still such a miracle. So, anyways, that song is very special to my family for that reason. I was pretty wiped out when we came home. I ate and then went strait to sleep for a quick nap; on the big bed of course! It might sound silly, but sleeping with my shirt off is such a treat! I’ve never been allowed to do it because I had that big long GJ tube hanging out of my tummy and it was just too dangerous. So, now that I have the small G Button, instead, it’s been really nice to have new freedoms. Hmmm…what else happened today? Oh! I drank! From a sippy cup! It wasn’t too long, but it was more than once. I had just water, but we bought a little apple juice today to try tomorrow. I’m excited guys! Just need to learn to drink so I can hydrate myself well enough on my own and get rid of this G tube feeding all together (my big goal for this year). Well, have a great night. Thank you SO much for all of the Valentines in the mail! I got a beautiful stuffed animal from my friends, some boughten cards with really sweet messaged in them and even some kool drawings sent to me. Happy Valentines Day tomorrow! I have a doctor appointment bright and early. -Heath

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2/12/19 - Storytime

Most nights, at bedtime, Mom reads to me. She says it’s her time to just enjoy being my Mom and it’s time for me to wind down and get relaxed for bed. I LOVE my storytime. I always give her the biggest smiles and i kick my legs and squeal with excitement. We always lay together on the big bed and Mom will prop me up in some blankies and pillows so we can snuggle comfy and read. Mom tries to just read me one story every night so my books last, but I am good at talking her into reading a couple. I love all books. Tonight we read from my Disney bedtime book, my Uncle Jake got me for Christmas. We read a Whinnie The Pooh story, a Lady and the Tramp story and I forgot the name of the other one about big guy that played in an arcade? They were so good. Mom was just finishing the last story and I was starting to get sleepy, so I snuggled into the covers deeper and then Dad popped in to say good night. I am so sleepy tonight now. I played really hard today. I was supposed to go to my physical therapy and speech therapy appointments, but they called Mom this morning to cancel because of the weather. We got another foot of snow! It’s so pretty! I can’t wait until I’m big enough to play in it. Maybe next year I can go for my first sled ride down the hill! That sounds so fun. Okay, I have to go to bed. Night. -Heath

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2/11/19 - Raspberries & Drool

Hey! It’s me! The “teething monster”, “drool master 3000”, cute little goober face kid. Well, those have been my nicknames for the last week it seems like. I’m not really enjoying teething. It’s rough. I am, however eating and now starting to dabble with the idea of drinking, much better since I have learned to manage all this drool. I learned to swallow it. Sounds silly, maybe, but it’s really been kind of a God-sent. I don’t choke on liquidy stuff anymore and that is awesome. Most kids, i guess, don’t like to eat good during teething time because it’s uncomfortable but I’ve been a little backwards. Also, I have a small amount of something we think is pretty funny sounding; drool rash. Drool rash? Who gets a rash from drool? Me i guess? It’s not bad at all and Mommy has been on top of it, but I have SOOOOO much drool coming out of my mouth that it’s no wonder my skin is mad about it. It’s drowning my lips!? Ha, ha, ha! Mom has even been having me wear a bib sometimes thru out the day to try to save my clothes from the drool. I don’t mind. It’s kind of like I have a kool bandanna on. I did learn, now, that I can make something Mom and Dad call a “raspberry”. I purse my lips together against my tongue sticking partway out and then blow and make a fart sound. All kinds of drool comes out with the air. It’s really fun. Okay, I’m kind of gross. I’m going to bed now. Ha! -Heath

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2/10/19 - Turtling

Nice relaxing day. Sunday’s are bum days for us. It’s so nice to wind down and just relax and not have to go anywhere. Mom and I were laying on the floor and enjoying a sunshine nap together. I like tummy time pretty well nowadays. Mom says I’m like a turtle when I’m on my tummy yet, though, because I’m still learning to roll and although I can do it, I sometimes get stuck. So I’ll lay there and rock back and forth kind of like a turtle on it’s back (but I’m on my tummy). We are writing an early post today, so I’m not sure about what else to say except that I’m happy. Right now we are watching a silly squirrel outside the patio window that found himself a big corn cob from the field and it’s pretty heavy for him to move. He’s dragging it thru the snow. Ha, ha. talk tomorrow. Enjoy your own Sunday Bum-day! -Heath

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