Monday, December 26, 2011

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.


Sunday, November 27, 2011


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.


Friday, November 18, 2011

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. 


Wednesday, October 19, 2011

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.


Greyson's 1st Birthday!!!

I know it has taken me forever to get this post done, but our Internet kinda stinks out here so I have started to upload pictures many times and it hasn't worked. 

We celebrated Greyson's 1st birthday at home on his actual birthday and had a big party with family the next day.  I made cupcakes for his party the next day and him and sissy got to eat one on his birthday. 

First we sang Happy Birthday to him and he thought it was the neatest thing ever.  He started saying "Happy" every time he wanted us to sing to him.  Which was a lot!  Then he would get a big smile on his face when you started singing.

It is either a Knigge family tradition or a tradition that Nate wants to start but our kids get to take the first bite out of their cake.  Addison blew out her candles and took a bite of her cake before it was cut.  Greyson had his own cupcake and his own birthday cake to chow into so next year he will get to bite into his cake. 

Greyson enjoyed his own cake and after the devouring his cupcake the night before he knew just what to do with the cake. He made a HUGE mess but he had a great time doing it! 

He looks like he in a sugar-coma here. 

He really enjoyed eating that cake. 

Here is the beautiful cake that Icing Smiles baker Andi made for us and drive down to our house an hour and a half drive the night before the party.  We are so thankful that such a great organization exists to find bakers to make cakes for these special kids and their siblings.  That's right they will be doing Addison's birthday cake as well.  I was so blown away at the great cake Andi made, since I thought it was going to be a sheet cake. 

I can't believe it has been an entire year since Greyson was born.  He has been through so much in such a short time and his heart battle is yet to be over, or stabilized I guess.  We are so blessed to be able to have him as our son.  He amazes us and others around him every day.  Especially when they find out he has a heart defect.  I chuckle a little every time people ask if it is just a whole in his heart.  Someone always know someone who has a whole in their heart.  They are pretty shocked when I tell them No he has a pretty complex set of defects.  He looks and acts just like every other kid his age.  I don't think his special heart has affected his growth or development in any way.

He is SO CLOSE to walking.  He will take a few steps and is starting to get more gutsy about walking on his own.  He is working on learning to stand without holding onto something else.  He FINALLY has a bottom tooth and I am sure his other teeth won't be far behind. 

Thank you to everyone who came out and helped us celebrate Greyson's birthday and all the support we have gotten from you all over the past year.  It has been scary and fun all at the same time. 


Thursday, October 13, 2011

Pumpkin Festival

The day after Greyson's birthday party we went to the Pumpkin Festival.  Greyson was happy to be there and the weather was SO nice!! 

Addison loves getting her face painted since she had it done the first time at the heart walk.  She decided she wanted a star and of course it had to be in her favorite color!

They had some bales set up and pumpkins so we took the chance to take some pictures while we were there.  The sun was shining right in their faces but we still got some alright pictures. 

One of the houses had a runway of pumpkins that we decided to take pictures in.  Addison was having a blast running up and down between them. 

I think the kids will want to go back to the pumpkin fest again next year.  Although it is pretty much a big craft show so I am certain there will be a time when at least Greyson doesn't want to go with us. 

Friday, October 7, 2011

Big 1 year old boy!!!

1 whole year!!!  It has been one whole year since our sweet boy came into this world.  I can't believe it has been so long already.  How worried I was a year ago waiting on his arrival.  I knew inside my body he was doing well and everything was fine...he was alive and happy.  I didn't know what his birth would mean, was he going to be able to survive without me providing him that much needed oxygenated blood?  When he came out I immediatly asked if he was blue and was reassured he was no more blue then any other baby.  I was terriefied until they let me hold my sweet boy before they took him to put in his umbilical lines and take him to the other hospital.  After spending many hours arguing with the nurses that I was not going to stay 24 hours at this hospital when I could be at the other hospital with my baby I was released by my AWESOME Dr. Velastos after just 12 hours in the hospital.  If you would like to read his whole birth story you can here.

Here is our little man right after he was born still in the little NICU room next to where he was born.  I love that little smile he has on his face.  We spent 21 days in the NICU and went from having an open heart surgery after birth to having a heart cath and being sent home to have a totally different repair then we had ever discussed before when he was 4-6 months old.  Thankfully I found the first heart blog and was able to read her son's story and see pictures of him right after the surgeries they were talking about doing on Greyson.  He has a different defect then Greyson but the repair is the same.  Please feel free to read Bryce's story, he is an amzing little boy and has such a strong mommy.

We had Greyson's Glenn scheduled for March 3rd, yup my birthday, but the day after Addison's 2nd birthday he decided it was time to get it done.  Guess he felt like I didn't need those 10 days to prepare and get even more scared of what could be the outcome of this event.  I was terrified but we had so many people praying for our little man and so many family members there with us it made things so much easier and the outcome couldn't have been any better.  His surgery went EXCELLENT and his recovery was even better.  We were home in 5 days.  You can read about that journey here.

On to present times.  Today Greyson went to his 1 year check up he was 19 lbs. 10 oz which is smaller then I had expected him to be but he is still a healthy guy.  He got 4 shots today and wasn't too happy about it, but quickly got over it with the cake they offered him at the Dr's office.  Clearly it made him quiet tired and he took a good nap after we finished shopping for his birthday stuff.

We made the cupcakes for his party tomorrow and after dinner GJ & Grams came down to have some with us.  He really thinks it is neat when we sing Happy Birthday to him, and usually claps and says "Happy" after your done. 

It is a Knigge family tradition to take the first bite out of your birthday cake before it is cut.  Greyson took a bite out of his cupcake before tearing into it. 

And tear into it he SURE did!!!

He even decided to finish off Addison's as well. 

We have been so blessed to be chosen as Greyson's parents.  We have gone through quiet a journey with you little man but we wouldn't have it any other way.  Our journey is far fromm over and we do have the other surgery looming over our heads while you just continue to grow.  Can't wait to celebrate with all of our family tomorrow at your big John Deere Birthday party bash!!!