Courage does have a number!

Sorry for the lack of updates lately but MAN OH MAN have we been busy. Riley has football basically every single night. He has Wednesdays off and then Sunday is no game and no practice but all the other nights it is 6-8, or when it is too dark to see anymore. I have to say Bryson is not always the best baby when we have practice but that is a long time to sit in your stroller and he gets tired of his toys. Then Kory has his band practice throughout the week and on weekends and football games and in the midst of all of that, we have this little one year old that is into EVERYTHING! He loves to pull up and turn the tv off while we are watching it and he loves to tear up my magazines and take frames out of cabinets. OH MY, I had forgotten how hard it is having a baby! He is so sweet though! He is a perfect mixture of Kory and Riley's personalities. He has Kory's sweetness and he is mischevious like Riley. I laugh because when he is in a good mood he is sooooo sweet. He plays catch and wrestles with you and is just so much fun, but when he is in a bad mood (tired or teeth!) geez, he is awful! He just whines and whines and NOTHING makes him happy! He is giving the whole family a run for their money!
Speaking of money, my sweet friend Jo that I work with reminded me that she wanted to give me some money to start Bryson a savings account. I told her we would work on getting that done. She also reminded me that she tried to give me that same money last year when Bryson was sick. She said, "remember, you told me to keep it, that you might be needing it for a funeral." WOW! I usually just don't think about it much anymore, but I did say that. Pretty powerful! Now I am just buying him Halloween costumes and toys! I like that! He never wore his first Halloween costume because he was still naked tarzan in the hospital. It was a tootsie roll....this year he is going to be a sock monkey. It is soooo cute but I am figuring he will keep the hat on for about 2 seconds...he can't take the tail off though! I will get some great pictures.
Also, when I was at the hospital a few weekends ago nurse April gave me the paperwork to get Bryson his "beads of courage" for his hospital stay. I know I have told you all about it in previous posts but some of the things you get beads for are:
cath lab
PICC insertion and removal
CICU or ICU admission
TPN
dressing change
echo
ambulance ride
sleepover at the hospital (needless to say he will be receiving a TON of these)
isolation
pokes (iv starts/blood draws) Again, tons of these too
x-rays (tons of these, still kind of worried about what kind of damage that may have caused!)
transfusions
ng and chest tube insertions and removals (lots of these)
ventilator support (yea, TONS)
visits from PT or OT
cardiac surgery
and on and on
You even get a bead for a discharge from the hospital!
They also give beads for extraordinary experiences or special accomplishments
Well I put down for two of those beads....one for the first time I held Bryson and one for the day he went up on the 8th floor
Anyway, I have been working very hard to figure up the number of beads he is to get. I checked back with Caring Bridge posts and some from just memory and on and on and the total number of beads he is supposed to receive is.......DRUM ROLL PLEASE.........736!
WOW! Talk about courage! I have to figure out a really creative way to display them in my home so please any ideas are welcome!
Anyway, we are great and we hope you are all great too! I am sooooo loving fall, I am so excited for Halloween and Thanksgiving and Christmas! So many memories to create! Happy Fall!!!!

Crickets and Poo!

Oh what a weekend! Man oh man alive! It was PACKED full of stuff to do! We drug that poor, sweet baby all over hell and half of Georgia and he was sooooo good! Seriously! He was so good! We invited one of Kory's friends and Bryson spent the better part of the trip down staring at him as he sat in the seat next to him. Once he decided that Kaleb was his friend he politely proceeded to spend the rest of the weekend using Kalek as his slave. He persuaded Kaleb to play the "throw and pick up game" for close to four hours on the way there and on the way home. He talked to him non-stop, tried to touch him with his nasty cheetoh fingers. He made Kaleb feel right at home. I think Riley has figured out that riding in the backseat next to Bryson is not all it is cracked up to be and so he promptly volunteered to ride in the very back seat, behind Bryson. And Kory is just really good at tuning Bryson out.
We had the best time, lots of laughs and a little (alot) of poo but I will get to that story later.
We celebrated Kory's birthday while we were in Dallas as well and so we visited Pappadeux for dinner on Friday night. It was a long wait but the food was good. Bryson has decided that he REALLY likes to eat and so he is trying and taking just about everything we give him (explains the poo, I suppose).
Saturday we got up and went to spend the remainder of our donation money at Babies R Us. Bryson helped us pick things out. If he thought it was good for the kids at Children's he would grunt and yell accordingly. We picked out about four mobiles (those things are EXPENSIVE!) and several other things. I think in all our donations probably equaled around $1,000. I am so proud of everyone who gave for this occassion. It meant so much to us and so much to all those parents as well. They were very gratful to receive the donations, I understand they were running low so it felt good to help restock.
I was so glad to see April as soon as we got there! She asked if I wanted to go back to the unit and I agreed. She said that if I felt like I couldn't do it at any point I could just leave. The funny thing was that I didn't feel upset or scared, to be honest I felt nervous, very nervous, almost to the freaked out stage. I think I was talking very fast and acting nervous too and I didn't mean to but I hope I didn't seem strange to anyone. I guess I just felt out of my element. Someone described it to me as "surreal" and that is probably exactly what it was. It was like I had never been there. It was like all those things had happened to someone else. Very strange but not upsetting at all, which was nice. Any other time I would have craned my neck to see patients in rooms, just out of curiosity and concern, and I never once "saw" once patient. I didn't want to. Not sure why, God knows I read every blog of every sick kid in Texas, but I just didn't want to see it. I thought that I would recognize the smell, the beeping of the machines, the familiarity of it all. The only thing that I really noticed was how quiet it was. It was almost eerily quiet but it always was on Saturdays. We hated weekends because it was so quiet and time went by painfully slow on those weekends. It was quiet! I really enjoyed seeing everyone. I loved seeing all the nurses. April would walk up and kind of gesture towards us and they would look at us like, "I think I know them" and then it would hit them and they would say, "Oh my gosh! Bryson!" I know they probably recognized me more than they did him. They were all so thrilled with him and how chubby he was. He was so tired and seemed so very bored with all of our "oohing" and "aahhing". I am so glad he will NEVER remember! NEVER! We took a picture of him in his first room there. He was looking around like, "what in the world is all this stuff! I could tear this room up quick!" I think in all we bunked in 5 or 6 rooms out of the 18. We were in room eight longer than any room. As we passed room 8 I did see a grandma standing over the "display case" looking at her grandson. I didn't really look at the baby, I didn't really want to. I think I passed by that room pretty quick! Dr. Koch (Josh) came up to see Bryson too and it felt so good to hug him and for him to hold Bryson. Bryson went right to him and let him hold him. It probably helped that he found Josh's pen in his shirt and was eating it. We took pictures with everyone and visited for a little bit. Then they came and found Josh because they needed him for a problem. They came and got April too because someone's heart rate was really high. It just keeps moving, life just keeps moving! I set aside a specific gift for a blog I am reading about a little girl with hypoplastic left heart. I got to meet her parents and give them the gift. I felt rattled and weird. I didn't know what to say to them. It reminded me of all the times that people didn't know what to say to us either. It was strange being on the other end. It felt really good to be able to take those donations and to visit everyone. It was something I needed to heal and I feel like that has happened. It happened so slow at first when we came home, and then one day, I just realized that I hadn't thought about it for days, and then weeks and on and on. Healing takes time, it takes time for the joy to overtake the sadness but it is worth the wait!
April also gave us the paperwork to fill out for Bryson's "Beads of Courage". I think I have that program before. It was just starting when we left and so we got some beads but not many. A child gets a different bead for each thing they "encounter" while they are sick. There are many, many different beads for many different things. It is going to take me a while to fill out the paperwork and I think they are going to have to rent a UHaul to get all his beads here but HOW AWESOME is it going to be for him to see those beads when he gets older. He gets a bead for every blooddraw, for every overnight stay, for every xray, for every day intubated. It is going to be amazing! I am going to figure out some creative way to display the beads so that people can see them when they come in the house and ask what they are. He truly is courageous! And he deserves every, single bead!
Oh, I have to tell you the poo story and one more story as well. Bryson has decided, or shall I say "Bryson's body" has decided that if he smells food, he makes poo....every, single time so restaurant visits are more fun than ever. So we have breakfast at the downstairs lobby of our hotel and here comes the inevitable flared nostril and look of total concentration. Might I add that it is really hard to enjoy your food when you know for a fact that the person sitting next to you is taking a dump. It just tends to take away from the magic of the meal. We had already turned in our key so I decided that I would lay back my driver seat and change him there. I unlocked the car and just sat him in the seat. Within a matter of seconds he was on top of the dashboard. The child is like magic! So I figure I better work fast so I lay down the seat, fetch him and lay him down. He starts the fight. He sits back up and that is when I see it......when I laid him down on my seat I unknowingly forced all the fresh poo out of his diaper, up the back of his pants and all over my seat. I just kept screaming, "Oh no! Oh no!" Kory, Riley and Kaleb literally ran 1/2 a mile away on the other end of the parking lot. They had been inside the car only seconds earlier! My mom was laughing so hard I swear she peed herself! Needless to say for a full 15 seconds I was all on my own. I managed to wipe up as much poo out of my seat as possible but was now holding a dangling baby fully clothed with poo all up his back. I cleaned the poo off his back and pulled his pants off. From there the poo trailed all the way down the back of his legs, onto his feet. My mother finally got control of her laughter and managed to unhook the diaper and it fell, with a loud thud at our feet. I have NEVER seen that much poo! NEVER! It had to have been 10 pounds of poo. I am still holding a dangling Bryson and he is looking at me like I am absolutely crazy! We went through an entire box of wipes and had to go inside and ask for a trash bag to put all the wipes and diaper. We went back in and washed our hands in the hotel bathroom. I have NEVER wanted to bathe in a sink so bad in all my life. Bryson rode home with no pants and my car still smells like crap! So lovely!
And after the State Fair we talked Riley into eating a salted, dried cricket. He started gagging and his tongue came out 10 inches from his body I swear and there on his tongue were all the lovely cricket parts: wings, legs. His eyes watered the rest of the afternoon. THAT ONE made me laugh until I almost peed my pants!
Gotta love it!!!!!

I don't want breakfast, I have a headache!

First, I will explain the frozen foods picture in a minute!
Secondly, don't turn me in for the naked guitar picture...I just couldn't resist!
I am sorry I haven't posted in a while but we are sooooo stinking busy! It is funny, the other day I was thinking, "Oh my gosh! Our lives are so crazy right now and it is driving me mad....and then I had the flashback, to a year ago today when I as going insane for so many other reasons...I smiled, knowing that this crazy is a great crazy, a fun crazy, a crazy I will someday miss and I smiled knowing that where we are today is so much better than where we were a year ago. I really do try not to think about what we went through, but sometimes I do, it is hard not to. I realized a few days ago that this time last year, Bryson had his chest open with his heart beating right before my eyes. It is so amazing! When I tell people those sorts of things, they look at me in total disbelief and I realize that if I were on the other side of that, I would do the same. I am in total disbelief of THIS CHILD! I promise you EVERY SINGLE DAY I stare at him in amazement of who is now. I do! I remember writing over a year ago about how I felt like I was in a nightmare that wasn't my own and I wished someone would pinch me so I could come back to reality. Now, I feel like I am dreaming but I pray every day that I never get that pinch. I enjoy that baby so much. I swear, I wouldn't care if he stayed just like he is right now forever! I hate to say I don't think I did that with my other children but he is soooo much fun! He is the BIGGEST clown! I don't know if it is because he is the baby and so rotten or just him but he has the BIGGEST personality ever! He is so smart and funny and I love watching the other kids interact with him. They love him so much! He is the blessing in my family that I never knew I needed! I cry as I type that because it just rocks me to my core, it truly does! Let me tell you about the things this kid does....and then I have to tell you about my other children (they are so neglected!:)) and then I have a really funny story to share so get comfortable people, I am not nearly done!
Bryson LOVES to play catch, with anything...balls...toys....socks....food! You name it he is throwing it but it is how he throws it that is so funny. He has a HECK of an arm and while I do think he is going to be left handed (thanks to my Mom and Mark, brainwashers!)he throws with both hands and I am not kidding, the kid throws far but about half of the time he just throws it straight up in the air and when it lands he just laughs and laughs. But when he throws he really concentrates and when he is done he looks at you with complete seriousness as if he is saying, "yea, I did that, what do you think about that?" and then it hits the ground and the laughter starts. He also likes to do monkey see, monkey do...anything we do he tries to copy. I picked up his "nightime" blanket and a bottle the other night and he said, "no, no!" I swear yesterday he shook his head at me! He has a "cage", it is a makeshift contraption all over the living room that kind of keeps him penned in to a large area. Well if the gate comes open, he is gone and he usually turns and shuts the door as if we won't catch him if he leaves no evidence and then he is down the hall and he is cracking up the entire time! I swear I have never seen a child crawl so fast in my life! He is really getting close to walking. He is cruising and even letting go and going in between things. It won't be long and then OH MY! I swear it truly takes a village to raise this one but it sure is fun!
Riley is still kicking butt and taking names in football. He LOVES it! He also LOVES school and he is doing so well. He has a few learning disabilities and we have really struggled with him in the past, but now, he doesn't need help on his homework or anything and his grades are great! I am so proud!
Kory is doing so great right now too. He, as always, has great grades but Pre-AP geometry is kicking his butt. He is such a good kid and so responsible. He is now in a band. He is the youngest, playing guitar of course and the others range in age from 22-16. I have met and gotten to know them all and they are great and they are so happy to have found him. He is really a good guitar player and he is so happy. He told me that this is the best thing that has ever happened to him. It just makes me feel so good to have such happy kids. I think that is all a mother needs to make her life complete, just happy kids. I feel so good where we are right now and I think I just enjoy it more because of where we have been. I NEVER thought that something like Bryson's illness could change my life so very dramatically, and in such a good way. Out of tragedy, comes such joy! I don't wish tragedy on anyone but I do wish that everyone could experience life like I do now. Talk about not sweating the small stuff, it justs feel so great!
Ok, so I had the crappiest day yesterday and I went to Target (nothing works like retail therapy for me!) and I passed the frozen foods section with the breakfast stuff and I see the condoms in the freezer. I laughed so hard and when I was checking out I told the lady and she was shocked and said, "really?" I said, "yes, I guess the sun isn't the only thing rising in the morning!" She laughed so hard and then she told a fellow employee to go remove the box and we look down there and several Target employees are over at the freezer section cracking up and taking pictures. It was too funny! Made me feel better about my day!
We are headed to Dallas this weekend! I am so very excited! I can't wait to give all of our things and mostly I can't wait to see the nurses! (April, if you are reading this be on the lookout for us!!!!) I just can't wait for them to see how different he is. Such a miracle! I will post lots of pics of all the donations and of Bryson with his "family". It is kind of weird, I am reading a blog right now of a little girl at Children's with heart problems and I can see her in my mind wearing the bows, or socks we bring, or watching a mobile we have provided floating over her head! Giving feels so very good! I hope we can do it every year!!!!!

Oh what fun we will have!

As you can see the party took place! Indeed it did! After months and months of planning, we pulled it off! I am sorry I wasn't able to post a picture of everyone there. We had SUCH a good turnout! How many one year old's have a four hour party with over 100 guests. I am "guesstimating" of course but we had a really big turnout and it was just great. Thank you so much for all those who came, some from a long, long way. Thanks for all those who helped me in any way with the party. Thanks to those who couldn't come but sent birthday wishes. It was such an awesome day! I was so stressed and busy that it didn't "hit" me until we sang Happy Birthday to him. That is when the tears welled up. I had envisioned singing Happy Birthday to him so many times but it was far sweeter than I had even imagined! He is so funny! He is so very oblivious to his true power, of how much a miracle he is. I can't BELIEVE the lives this kid has touched! I just can't get over it! And he just smiles and goes on about his business! And busy he is! He was so sweet at the party and just let everyone hold him. We passed the kid around like a joint! Hee, hee! When it was time for cake he wasn't sure what to do. He stuck a hand in it and then Riley decided to help him. He took Bryson's entire hand and laid it out flat on the cake, giving him an entire handful of icing that he then proceeded to throw. I call him "The Destroyer" for a reason. I don't know that he ever tasted that cake, he only destroyed it! He even attempted to push the remainder of his cake off of the tray so that it would all be gone. May I just remind you that he does that AT EVERY MEAL! I spend approximately 20 minutes each night cleaning up the remainder of food that he has thrown off of his high chair. He started off the party with a Rock Star shirt and jeans and camp shoes. He ended the party with no pants, just a diaper, an old pajama t-shirt and camo shoes. So cute!
He barely napped all day and I thought he would be gripey but he wasn't and I was SURE he would pass out as soon as we got in the car (I know I wanted to!) but instead he chewed on his shoe all the way home. It probably had cake on it! :)
Once we were home he continued to not sleep until probably 10:30pm. I know he was tired but HECK, you wouldn't have known it then or the next day. I think I was WAY more tired!
Anyway, it was the most amazing birthday ever and I am so very grateful to have so many wonderful people in my life to share Bryson with. I am one blessed girl!!!!
We got so very many donations for Children's, more than I could have imagined. So many! I also got a ton of money to spend on more donations.
I called today and spoke to them to find out how we were going to disperse the donations. I have to say that in my little, dream world we would drag B up and down the halls handing out gifts like it was Christmas but realistically I knew that was not the way it worked. And honestly, I think if I had to step foot back in that ICU floor I would be physically ill, I truly would. I think God intended for it to be this way to spare me any more heartache so instead, it will go like this. We will spend the remainder of the money to buy more things. One thing I really want to buy is mobiles. As you all remember Bryson's mobile was so very important in his healing. As silly as that sounds, it truly was. I swear, he still recognizes it! And many babies did not have mobiles. Just think, all they do all day is lay on their backs and look at machines and monitors, so mobiles are going to be brought forth, many mobiles! So we will bring all the goodies to the circular drive at Children's and they will meet us and unload them and then they will make notes and such. One thing they are going to ask is if we want these things to go to other floors of Children's or just "our" floor. I have thought about this a lot and I want the things to be on "our" floor. Not to be stingy but it is just something I feel right about. I want to picture those soft, silky blankets being laid down underneath a child who just had their heart fixed. I want the fluffy, stuffed animals to be used to hold up a ventilator for a child who is slowly healing. That floor means a lot to me. Which brings me to my next point......Today after talking to Children's and being saddened by the fact that we can't hand the things out and realizing that we can bring Bryson to the lobby floor but not in the unit and realizing that I won't ever step in that unit again.....I realized something...it is time for me to let go...to let go of bad memories...of open chests and tubes and deaths...it is time for me to move on and to feel joy...and only joy. Not joy tinted with fear, or joy tinted with distant memories that make me shudder...but TRUE, REAL JOY! I really feared that starting September 17th on it would be bad..that I would think, "today is the day that they did this...today is the day they did this." but it hasn't been like that. One day, out of nowhere, it just stopped, not fully, but nearly and it has felt so good and so freeing. So I am going to go down there and share the wonderful gifts given by all of you and share my wonderful gift of a sweet, blonde, curly haired little munchkin and that is it. Then I am going to come back and I am going to spend Halloween with him (he is going to be a sock monkey!) and Thanksgiving and Christmas and Easter and another birthday (way more low key than this one I might add) and on and on and on and I hope to be able to share that all with you as well! Oh what fun we will have! I love you all and we would NEVER be here without all of you! NEVER!

Toilet bowls woes!

Well it is official! Bryson is just a normal one year old boy! Sounds weird, right? On many levels, I mean who wants to say their child is just "normal"? Well, he is extraordinary! We all know that but at the same time, he is NORMAL. We went for his one year old appointment yesterday and he weighs 20 lbs. I know, that is it! I was so surprised. He feel like he weighs 75 pounds! And he looks so very chunky, but he is short too so that explains that. I know the cardiologist wants him to weigh more but the doctor said that his weight is perfect. He is in the 25th percentile for weight. I can't remember his height percentile, low I am sure and he is in the 95th percentile for head circumference! Big headed kid! Hee, hee! When we go to the two year appointment I will get the "talk" about how their heads are bigger than their bodies and they can fall head first into the toilet and drown because their heads are so big and heavy. You laugh, but she really tells me that. I had nightmares of their little legs sprouting out of the toilet, while they kick and sputter toilet water! Seriously?!?!?!?! Anyway, he is great! She said she is sooooo happy about him in every way. He is all caught up and on NO MEDICINES AT ALL! Crazy!!! This is the same kid who had a bad heart, bad kidneys, on 15 different meds, a feeding tube, physically behind by 5 months and they thought was also neurologically damaged! And might I just add that he is as smart as a whip!!! Got it from his mom! :)
He got five shots yesterday and he screamed when he got them but quieted down right after and then we walked in the hallway and there is a little porcelain baby on a shelf. Bryson LOVES babies, their faces especially and he got so excited and then he got right in front the baby and he just cried and moaned to the baby as if he was telling him all about the terrible shots. It was hilarious! Bryson did have a rough time the rest of the day. The shots gave him a pretty good fever and he felt pretty bad but today he is better. He better be, he has a kickin' party to attend!
I am so excited!
I will post TONS of pictures!
Riley is doing great, he is LOVING football and he is so aggressive. I am shocked! It sounds terrible but I love the sound of his helmet smashing into the other kid's helmets. I know, I am turning into one of this sick, Texas football moms. Guilty!
Kory is so sweet too because we went on and on about Riley at football and instead of being jealous he was just so excited for Riley and complimenting him over and over. He just has the kindest heart of anyone I know! You wouldn't know it with his "tough guy" exterior, but he is a sweet teddy bear kid!
I am so proud of my boys!

HAPPY BIRTHDAY BRYSON!!!!

Today is the day! It is Bryson's Birthday! I can't believe it! It kind of stinks because I haven't been able to tell him happy birthday because he was asleep when I left this morning but he woke up at 12:15am (because of a passing storm) and I whispered "Happy Birthday" to him.
Here are some Bryson facts, written by the big man himself!

I was born on September 17, 2009

I was actually due on October 13, 2009

I weighed in at 7 lbs, 11oz

I spent my first 141 days in Dallas Children's Hospital, 131 of those days were spent in the Cardiac Intensive Care Unit.

My momma held me for the first time when I was over 2 months old.

I had my open heart surgery on September 30th, it took about 5 hours.

I have 12 scars, one which measures 5-6 inches. My scar will not grow as I grow so it will only get smaller as I get bigger.

My sternum was wired shut and so when I get chest x-rays I have two small figure 8's in my chest.

My medical bills were over 7 million dollars...and I am worth EVERY PENNY!

I had thousands (literally thousands) of people praying for me!

I am ticklish under my chin.

I have three teeth, two on bottom and a fang on top! FANGTASTIC!

I like beards, they fascinate me, especially my Dad's.

NO ONE is funnier than my two brothers, NO ONE!

I have my own personal nanny who spoils me rotten everyday!

I love my toys, ALL of them!

I love my bottle, even though I was tube fed for the first 10 months of my life.

I am NOT afraid of the vacuum cleaner but I am VERY afraid of the carwash.

I love my family very, very much and they love me too.

But ABOVE ALL, I am a TRUE BLESSING FROM GOD!!!!

One more day!

Tomorrow is the big day! Big day indeed! Bryson is turning one year old. I can't believe it! I say it to everyone I can because I just like to say it out loud, I truly do. He is so sweet and I hope to post some neat things tomorrow. I need a good pic tonight so that you can all see how sweet he is. His hair is curling up so cute! I don't know if I will ever cut it and he is sooo blonde!
We took him for an ultrasound today to see if his clot is gone. Funny thing, I SWEAR he had a clot on both clavicles but they only checked the left. Either way if one is gone, I am sure the other is as well. If the clot is gone than we can quit giving him baby aspirin, which can cause Reye's Syndrome in kids. The benefits far outweigh the risks right now but if we can get off of it, we should. IF he has no clots and we get off of baby aspirin we will officially be on NO MEDS, NONE! Isn't that sooo hard to believe??? I can't believe it! I am so proud of Bryson!
Riley and Kory are doing great. Kory is sweet as can be and so funny. He is on facebook now and I am just mortified at times at his posts. He has no filter sometimes! Riley is playing football and he loves it. Secretly, I think he just loves it because he knows it impresses his dad so much, but I could be wrong. I was wrong this one time. :) Hee hee! A girl at school told Riley that he needed to lose weight and he proceeded to tell her that he was putting on weight for football. Funny! You would think he was going straight into Permian after this season! :)

Look for a post tomorrow about a sweet, blue eyed little monster! Love yall!