Wednesday, April 18, 2012

Easter 2012 - A little late.. but hey we have been busy!

Finally catching up enough to post on our Easter. We had a great Easter weekend. Good Friday we took off and had a day trip going to see the bluebonnets and taking the kids for their first trip to Texas A&M. Those pictures are in two posts below.

Saturday Katherine had a soccer game. She has been doing really well at soccer. We are halfway through the season now. She has scored 2 goals and has assisted in about 4 goals. She is getting really good at being more competitive, getting in there and fighting for the ball. A few times she had got in the huddle, fought for the ball, was able to turn it around, pass to an open teammate to score. At first she was upset about not scoring more, but Matt and I have been explaining to her that passing to an open team member to score is just as good, even better. That soccer is a team sport and that defense and assisting in a point are just as important.
Saturday after the soccer game we dyed Easter Eggs. This year we got a Tie-Dye kit, so we did some regular eggs and some cool ones too. It was all fun and games until the end when Colin spilt the green coloring all over the tile and the grout. Luckily it came up real easy and we were done with the eggs. Saturday night once the kids were asleep the "Easter Bunny" came and filled up the Easter baskets with goodies and hide eggs in the backyard with flashlights.
The kids were thrilled when they woke up that morning to see their baskets, get their goodies, and hunt for eggs. Katherine is such an amazing big sister, she got her eggs and helped out Colin so they could have an equal amount. She does really love him so! That afternoon Matt's parents came over for more Easter baskets and some lunch. Then later on we went to a friends house so all the kids could have an Easter Egg Hunt with their friends, then to top it off, my brother and his family came over that evening for more Easter baskets and treats!!

We have a great Easter weekend. Colin also told me on Easter that "Jesus has risen". I told him he was right and I talked with the kids about the real reason we celebrate Easter. Jesus gave the ultimate sacrifice for us, and we are truly thankful for that.

Tuesday, April 10, 2012

Fontan (Colin's 3rd Surgery) Here we come! - Cardiology update

Colin had his 6 month cardiologist appointment yesterday. I will share the BIG news first, then go into how the appointment went.

The time has come to plan Colin's 3rd and hopefully final heart surgery. The surgery will be 4 - 6 months from now! (Yeah my mouth dropped when she told me that!) I had to choke back the tears when she said that it was time. Though I think a few got out even though I was trying so hard not to. I thought we had more time before the next one.

The first step is a heart catheterization so they can get a good look at what all is going on in his heart. This will be scheduled for 2 -3 months from now depending on scheduling issues. This is Colin's first trip to the cath lab, so I am terrified of it. Once they know enough from the heart cath, the Fontan surgery will be about 2-3 months after that. So we are looking at August - October. (Mouth still sitting on the floor).

The heart cath, they will go in through Colin's groin and take measurements of his pressures and take a look at his leaky value. It should be just an overnight stay. With his surgery, we are looking at 1-2 weeks in the hospital. Colin will need to be pulled out of daycare 2 weeks prior to surgery and 6 weeks post op (Thank GOD for retired grandparents!).

The decision for the surgery was not based on Colin's heart function decreasing, but he met the weight requirements, he has had harder time keeping up and gets out of breathe quicker, weight gain was not so good, and he is a little bluer tint. Also on his last echo, they saw narrowing of his pulmonary artery, so this will either be addressed in the cath lab by ballooning it or during the Fontan. His cardiologist would rather get him on the books now than wait until he absolutely needs it.

I have very mixed feelings right now. I know he needs this 3rd stage and will do so much better once he has it. It will give him more energy, his heart will not have to work so hard, he will gain weight better, his color will be more pink. I like the idea of getting it over with so it can stop hanging over our heads. BUT it's hard to realize I have to hand my 3 year old over again for open heart surgery. I am scared, terrified of having to do this again. Colin last surgery was when he was 5 months old, our lives have been so removed from that aspect. It's a place I knew we had to go back to, but I want to throw up thinking about it. Watching him sleep last night, I couldn't help but cry thinking of what he has to go through in the next few months. As his mother, I wish I could shield him from this, no kid should ever have to face something like this.

BUT he is strong, God has a plan and has taken care of Colin so far. Colin has some amazing guardian angles watching over him. I know he is in good hands through God and the doctors, nurses, and staff at Texas Children's hospital. I know we have a great support system to get through this.

As for the appointment, they were NOT able to do any testing because Colin just plain refused! He screamed so long and hard about taking blood pressure and EKG, they were not able to get readings. BUT he did let them put the halter monitor on for a 24 hour recording AND he did go in the big boy potty 4 times while there.. hey you win some, you lose some. We took him and Katherine out for ice cream to "celebrate" our day.

I want to thank you all for your continued support and prayers. We will need them in the upcoming months. Please pray that this is the last intervention needed, it is the last planned one, but we hope that this will be it.
Playing games BEFORE the melt down

Not happy after several attempts at trying to get the EKG
Hey.. what are these things sticking to me.. I have to wear them how long?
Not letting this contraption stop me from having fun

A wonderful spring trip - Bluebonnets everywhere!!

We decided to take advantage of our three day weekend and make a day trip out of town. We headed towards College Station (Texas A&M where Matt and I went to college and met). One the way we stopped to take pictures in the bluebonnets, a great Texas springtime tradition. Bluebonnets only bloom once a year along with the other wildflowers, it makes for such a pretty sight and great backdrop for pictures. The kids had a lot of fun playing in the field of flowers, I even got them to pose a few times. The weather was perfect for a day trip, clear blue skies and only about 80 degrees.
She loves him so much
Playing in the bluebonnets
As Texas as can be with her Aggie gear and the bluebonnetsTrying not to step on the flowersAfter bluebonnet pictures, we headed to College Station (aka.. Katherine calls it - Where the Aggies live). This is the first time we have taken the kids there. Katherine wanted to go inside the dorms and classrooms, glad she is taking an interest already. Behind the alumni center is a large Aggie ring, Katherine just had to stop there since it was just like mommy's ring :). We took them to the bookstore and they picked out their own Aggie shirts & hats. That's why you will notice in some bluebonnet pictures they have nice clothes then some in Aggie clothes. We did one set of bluebonnets before our visit to A&M and the other after our visit to A&M.

We then took them over to Northgate for a few photo ops outside of some of our favorite bars, even having them playing dominos in The Dixie Chicken.. a great Aggie tradition. I tried to get them to take a cute photo in Bottle Cap Alley where Matt and I had our first kiss (literally an ally full of bottle caps between 2 bars), but the kids had no interest in that.

It was a beautiful day and nice to get out of town and just enjoy each others company, great weather, and of course the bluebonnets.

Wednesday, April 4, 2012

Happy 3rd Birthday Colin. aka Superhero!

Wow.. 3 years have flown by! We are so proud of Colin and everything he has accomplished in 3 years. I will try not to get too sappy in this post, but can't blame me if I do. April 3, 2009 a healthy baby boy entered our world. It wasn't until April 6th, 2009 that we would come to know he wasn't as healthy as we all thought. But it has never stopped or slowed him down. And I pray to God, it never will!

I am proud that Colin is on track with his peers, is truly a "normal" 3 year old (just a little small.. but who cares). He loves super heros.. I think because he deep down inside knows that he is really one of them. He has overcome so much, from severe feeding issues, motor skills delays, not to mention 2 open heart surgeries, months in a hospital, monthly shots, medicines around the clock, and isolation the first 9 months of his life.

Colin has taught us the "true" meaning of life. I appreciate life, my family, God, friends, my work, and so much more because of him. Colin is so strong & brave, loving & cuddly, strong willed & spirited, smart & caring, silly and a little bit of a trouble maker.. all the more reason to love him!

Colin picked the theme for his party this year.. Spiderman. We had a spiderman cake, spiderman moonwalk, spiderman mask, he got spiderman clothes, and spiderman toys! Saturday we had his party with his friends, 14 kids in all. Poor Colin was a little under the weather, but still had a great time. But he did take a little nap during the party, it's okay, it's his party and he will nap if he wants to. But he still woke up in enough time to get EVEN more playing in.

For his "real" birthday, I took the kids to the donut shop in the morning, deliver cupcakes to his classmates, then after school we went to the Great American Cookie company for afternoon treats. Then home to open presents. He loved his superhero cape and mask we got him (look at first picture of post), then ice cream after dinner. Getting him to go to bed that night was hard.. with all that sugar!!

I love seeing him so happy on his birthday and all the time really.. he has been through so much and is always so happy (well a few tantums here and there), he is such a happy child who loves to play, smile, give hugs and kisses (and even sometimes lick you), loves his big sister more than anything, loves to cuddle and watch movies, loves to SWING adn go higher and higher!

Happy 3rd Birthday Colin! Blowing out the candles

Everyone, even the adults had fun in this

Jumping with sissy before the guest arrive
What a mess.. must mean the cake and ice cream were really good

Opening presents

Colin loves his spiderman shirt grandma got him
Taking a little nap with his new toy while the party is still going on. Poor kiddo, just wore himself out
Trying to get them all to pose was hard
I am now Batman!
Back to spiderman.. thank you Uncle Russell & Aunt Lara
Love this picture! Colin was getting ready for school and this is what he picked out. I did make him put on clothes ;)