Greyson's Surgiversary

Today was Greyson's heart surgiversary.  I had a hard time last night knowing that one year ago we were sitting in the hospital 10 days before we were scheduled to because Greyson decided he was done laying around with no energy and wanted to get this surgery over with.  Little did I know at that time that I would be totally surprised at how well he did.  I guess I should have known then to trust him more. ;)  He knows what he needs and I guess he needed to get this surgery out of the way. 

This is what we saw about 2 in the afternoon when we got to see him again.  He did so well and recoevered so quickly. 

I can't even begin to express how thankful I am for his cardiologist, Dr. Rahimi, who looked so terrified when we brought Greyson up the night before with sats in the low 60's.  I thought he was in a bad mood, but later found out from the ultra sound tech that he REALLY worries about his patients like to the point of loosing sleep over it. Dr. Fiore who, with his HUGE hands, got in there and partially repaired Greyson's heart and will do his next surgery probably next summer.  Barb who kept us updated every hour about how Greyson was doing even if there wasn't anything to tell.  We could really tell she cares about her patients and she was so excited to see him in he cafeteria a month later at his post-op check up, she actually got off the phone with someone just to talk to him.  Dr. Bonderant who, although I think he made her a little nervous at times, took excellent care of him back here at home and continues to be his pediatrician.  Greyson is definitely not one of her easy patients, well I guess neither of our kids are.  All of my blog readers, Facebook friends, Heart friends, and local friends and family who prayed for Greyson all day during and after his surgery.  Papa Gary had over 200 emails of people praying for our little guy.  I know that this certainly helped Greyson do so well. 

So has this whole heart thing slowed Greyson down at all?  Absolutely not!  He was walking about a month after his 1st birthday, and talks All.The. Time!  He says so many words and definitely speaks in full sentences months before his sister did.  I wondered when I had him how long it would be before I was living with 2 comedians, well that time is here.  Between the things Addison does and says and the things Greyson does and says I am laughing almost all of the time.  I love the way he says "Yeah."  It doesn't usually matter what you are asking him you get a very enthusiastic YEAH back. 

I'll admit we did a trial run at potty training since Greyson has really showed interest in the potty.  We got him his own big boy potty, complete with musical tunes when he goes in it, and big boy undies and boxer briefs like daddy, yeah I just tol everyone what Nate wears, lol.  The first day he had a few accidents, which I expected, and did manage to go in the potty twice.  It was clear however that he wasn't quite ready for it as he would pee and not even know he had done it.  We will hold off a few months and give it a try again.  Once we can go outside more it will be easier I am sure since he can just go out there, that was one of Addison's favorite things, good thing we live in the country.  I was concerned, however, about his constipation issue.  Ever since he got sick a few months ago he has been constipated all the time, like goes every 2-3 days and when he does it is a big event, complete with screaming, crying, and pushing really hard to get out a golfball size nugget.  I feel terrible for him and had tried prune juice but it either had no effect or the total opposite effect.  I finally called the pediatrician and she suggested we try MiraLax, today is his first day on this new medicine so hopefully it will work out well.

I was telling Nate the other night how tired I am of having an assembly line to make milks for in the morning and now we have added another medicine to Greyson's milk.  I know as far as heart kids go his medicine regiem is nothing, but I hate having to put all the medicine in each kids milk and make sure I get the right milk in the right cup and that each kid gets the correct milk in the morning.  Last night when I was making up Greyson's milk I joked that his cup was half full of medicine before I even got to put milk in it, lol.  He is only on the MiraLax, aspirin, and vitamins plus milk and strawberry poweder.  Addison is only on the poweder from a capsule of antibiotics plus her milk and strawberry poweder but it seems like such an assembly line.  I think the Propranolol one year ago was a little easier then all of this milk business.  Guess we will just get used to it, Greyson will be on at least aspirin for life. 

I'll leave you with some pictures of the kids playing in the yard the other day when it was so nice here.  They had a blast.

Vacation...better late then never.

So we went on vacation in the beginning of January to Tulsa, OK. for the Chili Bowl Midget Nationals.  Now I tell some people this and they picture little people running around...no this is not what it is.  They are actual midget cars.  Pretty much a sprint car without the wings.  I have been going nearly every year since I was about 13 or 14 and it is a ton of fun.  These cars go REALLY fast around the track and when they flip...they FLIP!!!  I watched a flip on one of the qualifying nights where the car flipped up into the fence around the track.  The driver was fine, as is usually the case when these things go air born, but he couldn't get out without some help because he would have just fell down.  Anyway I think you get the idea of how awesome these things are to watch.  More on the Chili Bowl fun later.  We did other things on vacation too...

We got up every morning to have Krispy Kreme donuts (well nearly every morning) and Greyson LOVED them.  He loves sweets anyway.  Then we got ready to go to Addison's favorite store (and Papa Gary's also as she told us, althought I am not sure papa feels the same since he works there). 

This Bass Cro (Pro) was HUGE.  There was an Uncle Buck's resturant inside it and it was delicious! 

There was a huge fish tank that the kids loved looking at all the fish in.  I think Greyson just wanted to go swimming in it himself though.  That boy is a water baby as we learned at the hotel pool.  Addison was swimming by herself with her floaty thing on and was pretty proud of herself.  Greyson wanted to go to the side of the pool and jump in over and over again and apparently didn't care that he couldn't get there himself.  He would jump in to me then flail his body around to get back to the side, nearly flailing out of my arms in the process.  He will be getting his own floaty thing this summer for our pool.

Bass Pro also had a huge laser gun range thing.  Addison LOVES shooting guns and she was pretty excited to play with these.  I think we played 4-5 times and both kids loved watching all the different stuff they had in there.  When you shot it it would make a sound or do something and they were pretty entertained by that. 

I am not sure why these uploaded sideways and it took me enough to get them to upload in the first place, our interet SUCKS but we are in the process of getting better. 

Addison went to the races a few nights and was somewhat entertained.  I don't think sitting still that long is really her thing and she wasn't too impressed with the mud flying at her.  She was happy to wear her glasses and ear tetection as she called it.  Although she really doesn't look like it here. 

While everyone was at the races what did me and Greyson do?  Well he tried on my bra of course.  He just took it off the dresser and put it on, it was too funny not to take a picture of.

On the last night of vacation we decided to go to the track and go in and meet all the racers after the races was over.  We got there a little early and were able to watch the race on the screen.  (I had my money on the race and was lucky enough to win 2 nights while on vacation...which never happens for me).  After the race was over we went to meet the drivers, it was fairly late but the kids didn't do too bad.  Addison isn't like Greyson and usually doesn't like meeting new people or letting them hold her so daddy decided to hold her and let JJ Yeley hold Greyson.  What you don't see JJ holding Greyson in the picture?  Well that's because when Nate handed our little 'not affraid of anyone' boy to JJ he started crying.  He NEVER cries with new people I even said "you can hold Greyson he's not affraid of anyone" and he started crying.  Everyone is all smily in the picture (except the kids) because it was so funny how upset they got. 

When we went to see Jac Hadenschild the kids were more open to having their picture taken with someone who drove those super cool cars.  We did't do a lot of picture taking with drivers 1. because we didn't know how our kids would react and 2. because it is somewhat of a pain to get in to see them with everyone else waiting to see them too.

So when I went to my first Chili Bowl I got to sit in Sammy Swindell's car.  It was really neat and a memory and picture (although I won't be posting it here) that I will always have.  I wanted the kids to be able to sit in one on their first Chili Bowl, even though Greyson didn't actually go to the races this year.  They thought it was pretty neat.  Addison liked sitting in the car and driving with the steering wheel.

Greyson on the other hand is the future Chili Bowl champion!  He was in there adjusting things and checking everything out...he's such a boy.  This is Bryan Clausen's car.  He was super nice and even gave both kids little die cast cars.  The couple that sits behind us in the stands is friends with him and helped us get back to get the picture.  I fear we will be spending out money on this one day...wouldn't that make his cardiologist happy, lol.  At least he will be in a full cage. 

Vacation was a blast and I am so glad we got to take the kids.  I think Greyson will be more apt to go to the Chili Bowl then Addison.  It didn't appear to really be her thing.  We may try taking them both to an outdoor track sometime and see what he thinks of it.  I don't want him inside the chili bowl as it is all inside and the fumes get kind of bad, at least until after his Fontan. 

Here is a link to the Chili Bowl's website if you want to see what it's all about.

Also the morning of the main day of racing I got a text from Nate saying that Donnie Ray Crawford was shot by his grandfather.  I thought he was joking until I looked it up and it was all over the news but no one knew why.  He was a great kid man as you can see from what he did for a fellow racer.  Here is the link to an article that explains what happened to Donnie Ray Crawford.  He will be missed greatly in the racing world.  I am just so shocked by such a tragedy.  These things don't happen in the racinng world.  There are spats amoungst drivers and people get mad but it doesn't go this far.  I don't think anyone really knows what it is all about but it sure is sad to see such a great guy gone.

As far as Greyson's heart and health are concerned.  He is doing awesome.  You would never know how messed up his heart is by looking at him and we are so blessed to have him in our lives.  I never forget that.  I truely love seeing that cute little smile every day.  I am sure that he will continue to do great until he decides he is ready for his next surgery and hopefully that will be the last. 

Thanks for checking in with us, I hope to start blogging more soon.  We just don't do a whole lot in the winter, I am such a germaphobe we stay home all the time. 

Christmas & Cardiology Check up

A few weeks ago Greyson went to see his Cardiologist.  He had an echo done, which he was less then excited about.  It's not like it hurts him in any way but he didn't like her having that wand on his chest and belly and wiggling in around in his face.  Everything looked great on the Echo and his sats were right where they should be.  We discussed his next surgery and the heart cath he will need before it can happen.  I also asked what would happen if they did the cath and the pressures weren't right.  They can't do the Fontan unless the pressures in the heart and lungs are right and I didn't know if those not being good would mean we scrap the whole heart and look for a new one.  Luckily that is not the case and there are meds they can give him to correct the pressures and still be able to do the Fontan.  He didn't think that would be an issue with Greyson as everything is always right where it needs to be excussing the time he needed surgery but we knew it was coming.  As far as when Greyson's next surgery might be we are looking at probably next summer, the summer of 2013.  He is right at 22 lbs now which is how big he needs to be for the surgery to be done but they prefer he is 30-35 lbs and that will probably be more likely around next year.  They want to do the surgery in the summer so there isn't a big a risk of him getting sick either before or after the surgery.  We are hoping to be able to go on a vacation somewhere the summer before his surgery since we have no way of knowing how long we will be in the hospital or what his recovery at home will be like after.  We go back to see cardiology in June but as long as things are the same as they are now and he doesn't sprout up in size I am sure it will be a good check up and see you again in 6 months.

Christmas has been great for our kiddo's.  I am not sure there was anything they didn't want that they didn't get, of course Greyson doesn't really tell us what he wants yet but Addison sure tells us what she wants, and sometimes what Greyson wants too ;)  Santa was very genorous and brought her everything she asked for on her two visits to see him, her letter she mailed him, and the phone call she had to make because she forgot to tell him she wanted the Cat in the Hat movie.  This year she really got the idea of Christmas being baby Jesus's birthday and said Happy Birthday to him many times.  She also got the idea of Santa, although not the fact that she needed to go to sleep so we could too.  When she got up in the morning she was excited to see the presents and their stockings filled.  Santa brought a Trampoline and put it in the shed for her so we can set it up in the spring.  He left her a message about it and the other things he brought, but all she got out of the note was that Dasher had hogged all of the cookies.  Funny how the things we think are little turn out to be a big deal to a little kid.  Both the kids got some AWESOME gifts from their grandparents and other family members, I think we have almost enough for an entire band in out house now...yes Greyson got his first drum set from Papa Gary.  At first I didn't really think he would get the concept of it and wouldn't play much.  Boy was I surprised!  He knew just how to hit the sticks on the drums and picked up how to do the big drum with his foot too.  He also got just about every John Deere toy they have put out this year I think, and he loves everyone of them.  Addison got an ipod touch from santa and thought it was daddy's phone when she opened it, ha!  She got a leap pad which she thought was pretty awesome, just her luck she somehow managed to get the hot toy of the year and it doesn't work right, luckily she wasn't too upset when I told her we had to take it back and get a new one but being the hot toy of the year they won't have them in until the beginning of the year.  I am sure she has enough other stuff if we keep it out of sight maybe she won't keep asking about it.  She sure did have fun with it when we did get it to come on and I know she is going to love it once we get her new one.  There are just too many neat things to list here that they got but I hope everyone knows how much we and the kids appreciate the toys and the ability to be together around the holidays.  Last year we made sure to go to everyone's christmas no matter how rushed we were because we wanted everyone to be able to see Greyson, we knew that he was going to need surgery soon and we knew there was a chance that he wouldn't make it out of that surgery.  Looking at him now, just one year later, with pink lips and full of energy you would never know what he has been through unless you saw his chest...which everyone did after he spilled cold coffee on himself on Christmas Eve, ha! 

Merry Christmas to everyone, it was so great to see everyone and be able to visit, although I always wish we weren't so rushed getting everywhere, it is still great to see everyone even if it isn't as long as we might like.  We are thankful that we got to show off our crazy little boy again this year with a much pinker skin tone ;)

I was going to add some pictures but of course my phone doesn't like to let it load pictures.  Since I have started doing medical transcription school online we will be getting better internet in the next few months.  Hopefully the fiber the local company is putting in will come to our house and should be done in the next few months and we can get that.  If not we will have to get some satillite internet which won't be as good but we will still have internet at home which will be so great.

Walking

Greyson is now walking!!!!!

A few days ago he could take a few steps but now he is full on walking more then crawling.  He has started to learn to be able to stand back up with out holding onto anything.  According to daddy he will be running by the end of the week.  I would say that is probably pretty accurate.  If he is anything like his sister in a week I will be saying it will be a miracle when he learns to walk since he will be running everywhere.  I hate when he grows up and reaches another milestone but at the same time being able to walk will be so much better when we are out and about and he will be happier being faster and not getting left behind.  Which will make mommy much happier too. 

We had an excellent Thanksgiving actually we had three thanksgiving dinners over a 4 day period.  They were AWESOME as usually and I am so glad we were able to spend time with our family.  I am thankful that Greyson is still a part of our family and is going to the holiday gatherings with us again last year.  I remember last year thinking we needed to take him to as many places as we could since we just didn't know for sure if he would be here next year.  Now that surgery #1 seems like a lifetime ago it was a much more relaxed holiday. 

So a quick what I am thankful for:

My great and understanding friends and family.  I know we have been a little selfish here lately with everything that has been going on in our lives in the past year or so and am Thankful you have all been there and so understanding.

My Husband who works so hard for his family so that I can stay home with our kids.  It is so great to have someone I can totally relax around and laugh with and love for the rest of my life.

My ADORABLE daughter Addison.  I can't believe it has been almost 3 years since you came into our lives.  You make me laugh ALL THE TIME!!!  Even as I type this I am laughing at the things you say.

My SWEET/ROTTEN Greyson.  I am so thankful that you are as healthy as you are considering how unhealthy your heart is.  I am glad that you made it through your first surgery and I know you will come through your next surgery just as well.  I am so happy watching you grow and learn new things every day.

Over due update

This update is way over due.  I have been trying for weeks to upload Greyson's 1 year pictures because they are so cute, but blogger is really giving me trouble loading them.  I had them loaded and the whole post made and when I went to post it wouldn't let me.  It said it was saved but it doesn't show up in the drafts so apparently that was a lost cause. 

Greyson has been doing LOTS here lately but nothing big on the medical front really.  He does have a cold right now and we went to see daddy's pediatrician Dr. Meyer today just to confirm that is what it is and nothing more.  If it turns into something more we will have to go back and get more medication.  He isn't very happy about it and it gets way worse in the evening and I have been up with him a few times because of it. 

Greyson is WALKING now, not all the time and not everywhere but he knows how to do it...when he wants to.  Most of the the time he would rather crawl since he is much faster that way.  He will get to walking on his own time, just like he does everything else.  He has both of his bottom teeth all the way through and the top two are working their way in also, which I am sure doesn't help with his cold. 


I will continue to try and post the pictures but I am not holding my breath.  I will try to post an update after Thanksgiving and I am super excited about Black Friday hopefully we will get the few things we are going after.

Doesn't he look like such a big boy here?

Isn't that a rotten face.

Finally by loading them into photobucket and then loading them on here I was able to load them all.  Who knew I could have done that weeks ago.  Much easier to do it that way, especially since I can do that from my phone.  If you get my blog through email beware your email my blow up soon now that I have figured out how to post pictures better. 

MU Homecoming Parade!!!

This weekend was the 100th Homecoming for our Missouri Tigers!!!  M-I-Z!!!  We got up at the butt crack of dawn and headed downtown to set up and wait.  We got to run down to Panera and get some yummy bagels to eat before the parade started.  Greyson stayed with Grandma Grape while we went to get bagels. 

Doesn't he look all relaxed there waiting for his food to be served?  This is not a typical Greyson look maybe he was just up too early to worry about food just yet.  He had already had his cup of milk/medicine so maybe that helped.

Addison was very excited for the parade.  She had been waiting all week to go to the parade and asking me every day if today was the day we were going to the parade.  She is like her momma not typically a morning person so I thought we would have an issue getting up so early.  I told her the night before we were getting up early to go to the parade and she seemed alright with it.  I got up at 6:15 to get myself ready then wake each kid up and get them ready.  Addison must have been ready to get up since she was awake at 6:30 ready to put on her Tiger stuff and go.

Marching Mizzou!!!  Addison LOVED the marching bands and Greyson liked dancing to it. 

Truman the Tiger.  He wasn't quiet as exciting to the kids as I thought it would be. 

Golden Girls.  Addison informed me that she was going to be a Golden Girl when she got big.  Guess we better start saving that college fund now. 

Mommy & Addison watching the parade.  I held her most of the time since she couldn't see anything standing up.  Of course when someone was throwing candy she had to get down to get it.  The people handing out candy and stuff always made sure to put one on Greyson's lap, who was sitting right next to Addison, but never gave Addison one.  Oh well they all went to her anyway since he can't eat most of it.

Here's  a few pictures I took of the kids that I thought turned out pretty good.  They were having a good time watching the nearly 200 entries.