Tuesday, August 28, 2012

1st day of 1st Grade, Jumping party, splash pad, and waterslides

Katherine started first grade this week! Cannot believe how much she has grown and that she is in 1st grade already. She at first just wanted to ride the daycare bus to school, but finally convinced her to let me walk her in the first day.

She was very excited to go back to school. She will have two teachers this year instead of one. Can't wait to see what this school year brings her! She was very excited when she came home, they spent the whole day with just the morning teacher to get to know her and her classmates. She said her first grade teacher is even nicer than her kindergarten teacher (one reason because you don't have to ASK to go to the bathroom).
Colin wanted his picture taken too!
Katherine and her friend Rylie
 One of Katherine's friends had her birthday party at an indoor trampoline place. The kids whole family had a blast bouncing and jumping. We worked up an appetite! Had to go home and shower before going to Matt's parents later that day. Colin and Katherine both say they want their birthday parties there too!

We attempted to go to the zoo the other day.. what were we thinking.. it's Texas, it's August! We only lasted about an hour looking at the animals, but luckily the zoo added a new splash pad area.. the kids had fun cooling down there. I got in too to cool myself down. NOTE TO SELF.. STILL TOO HOT FOR ZOO!

 Last weekend the kids were begging to go back to the waterside park in Galveston, so we met up with some friends and took the kids down for the day. They LOVED having their friends there to play and swim with! It had rained all morning and on our ride down there, but luckily the rain stopped as we were parking and it became a beautiful day!

Thursday, August 23, 2012

Colin's Fontan Surgerical Consult - Looking at Summer 2013

Yesterday we had Colin's pre-surgical consult with his surgeon at Texas Children's Hospital. A little back story to update all: In April we were told that Colin's next (and hopefully last) surgery (Fontan) was going to be this summer. After that appointment Colin had a heart cath in May and an echo in June to fully see what was really going on inside his little body.

Yesterday's appointment we were told that most likely Summer 2013 is our target date. We are pushing it back since Colin's heart looks so well and his function is good. Colin is still on the smaller side, so they want him to gain more pounds so they can use a bigger conduit (synthetic tube graft used to direct blood flow) in his surgery. They could use a smaller conduit now, but it does not grow with your body, so it is better for adulthood to have the bigger one.

But if his heart function starts to decrease, oxygen levels go down, or his leaky value starts to leak more, they will do the surgery sooner and have the smaller conduit. So we will continue our 6 month check-ups until they think he is either big enough or until he absolutely is in need of it, whichever comes first.  Yesterday we were told that Matt & I could pretty much plan it, so if all stays the same and he is doing so well, we think maybe late July 2013 when it gets too hot to do anything anyways.

Here are some of our questions we got answered, some might only make sense to the other heart parents following our blog, but I will try to speak to each point for all to understand:
-       Depending on how well Colin is doing, he might not need another cath before next summer. They feel as long as it's within a year of the surgery (or close to) they won't have to go in again. If they need more pictures, they can do an echo and/or MRI
-       Our hospital does the External Conduit Fontan (there is another version of the surgery.. Lateral Tunnel Fontan) which means the operation is done by attaching a tube of a special plastic (a conduit of Gore-Tex) from the lower body vein (Inferior Vena Cava) to the base of the lung artery (Pulmonary Artery) diverting blue (deoxygenated) blood away from the heart straight to the lungs.
-       80% of their fontan's do not receive fenestration.. it is only done on a case by case basis. If Colin stays low risk he will not use fenestration – A fenestration is a hole that is created between the tube and the right collecting chamber (Right Atrium). As with the Internal Fontan there can be a rise in pressure in the lung arteries after surgery and the hole acts as a pressure valve.
-      Colin has a mild leaky valve. They worked on it during his first surgery. It has not changed since then, and they have been happy with that. As of right now, they are on the fence about trying to repair it or not. It is a mild leak, so they are going to do an echo in the operating room to make the call about it then. There is of course more risk with working on his valve, as you could make it worse. Also if they work on his valve, they will have to STOP his heart to work on it. And the risk of stopping the heart is that you can get the rhythm out of sync and might require a pacemaker to help with that.
-      We discussed possible complications: First is getting back in through his original incision and scar tissue, there is a chance of puncturing a hole in the heart, fluid can build up around the lungs (which will make your hospital stay longer).  And of course with all surgeries, chance of seizures and stroke.
-       This type of fontan was developed in the early 90's.. so most people are only about 18-20 years old. There is still so much they don't know about the future of having only half a functioning heart. What effects it has on the rest of the body. The liver, intestines, and kidneys see higher pressures due to this reroute of blood flow, so there is a chance later down the road to develop problems with other organs. Some have gone into heart failure and have had a heart transplant and some were not candidates and have passed away.
-      Normal hospital stay is about one and half to two weeks, depending on the fluid level.
-      He will have drainage tubes around his lungs and heart. To help with getting the fluid off, they are really going to restrict the fluids he takes in, which I heard is really hard when your child is begging for water and you have to tell him no, or only just a little sip.
-      They try hard to get the breathing tube out before leaving the operating room.
-      We will expect to spend about 2-3 days in the ICU, then move down to the regular floor. He will be able to move around and go to the play room with the tubes still in.
-      If Colin has developed fatty fluid around the lungs and is hard to get rid of, we will be sent home on a low fat strict diet for 3-6 months.

Okay so my thoughts and feelings:
-       Glad he is in great shape to wait and that they are so happy with his function and how well he has progressed. I am so grateful that he is a candidate for this surgery.
-       Once again weight gain is going to be a major stress in our house; he needs to gain about 3 more pounds by summer, which is not an easy task. He likes food, he eats.. but it is a lot of begging and pleading and sneaking calories in where I can. He has always been small and doesn't ever gain in huge amounts, but we will keep pushing food and more food, and more food.
-       The leaky valve scares me the most. I hate thinking they might have to work on it. I am distraught over the idea of them having to STOP my sweet little boy heart in that case. As a mother, I cannot even express the sadness I feel knowing the complications to that while looking at my blue eyed, white hair little man.
-       We are still going to live as life with the blessing we know Colin is right now doing well. We are going to soak up all we can out of life and each other, because one day Colin might not be as strong, he might develop other health issues, he might fly through these surgeries but at age 30, his heart might get too tired of only functioning on half a heart, and it might just give out. We will always live with the fear of the unknown.
-      I have so much HOPE for my son in the future. He is strong. He is a fighter. He is a superhero! He has done amazingly well thus far and has set the bar high to keep it up and I fully believe in him he can.

So it was a good appointment (expect they were running 3 hours behind) with lots of positive talk about how well Colin is doing, it also brings it back down to reality that he does have such a major heart defect. We have been so removed from the world of surgeries (his last one was 3 years ago) that is surreal to have to think about it again. But we now have about a year to live life to the fullest, to enjoy more trips to the beach & river, more play dates, more laughs and giggles, more bedtime stories, more snow cones & ice-cream, more road trips, more family movie nights, more of each other, more of everything really. However long my son is on this earth, whether it be 15 year or 80 years, time is not to be wasted. As one of my favorite quotes " Do not squander time; for that's the stuff life is made of". 

The photo collage that we gave Colin's surgeon.. he loved the peeing picture! We tried to capture the true love of life our son has and how active he is.

Wednesday, August 15, 2012

Family Fun Day & What's with the dead fish?

Yesterday Matt decided we should take off of work for a FAMILY FUN DAY. We headed down to Galveston to go to a nice water park. I have a friend who works there, so it was nice to be able to stop by and visit for a little bit with him. I think Katherine was 4 when he got to see her last, so it had been awhile.  

We had a blast! Katherine actually went down watersides...she has NEVER been a fan! She must of went down them 50 times, she wanted to go on the bigger ones, but she was an inch too short. But I am so so excited she is taking an interest in watersides, as I am a water park junkie! Colin and I went down the slides together about 30 times.They also had a lazy river the kids loved and 3 different splash pad areas. The kids LOVED the wave pool, great waves like the beach without the saltwater in our eyes. It was a GREAT family fun day. Much Much better than sitting at work on a Tuesday!!! I didn't get many pictures of the kids because we were all too busy going down the slides or floating the river, but before we left I got my camera out and snapped a few shots.

I am so glad we are have the opportunity to take off work during the week to spend time with our kids as a family. Matt and I spend a lot of time working, sometimes I feel like most of our lives it's work, work, work. It is a blessing to get to take a day aside for family fun day. The kids are ALREADY asking when are we going back!

She had so much fun. Look at that smile!
The watersides where we went up and down, up and down, up and down
Matt and Katherine relaxing in the beach chairs in the white sand after the water slides, wave pool, and lazy river

Follow the yellow brick road

Saturday morning t-ball was a scorcher as always. Katherine did really great at hitting and throwing the ball. And of course looking cute while doing it all. We just have one more game left of the season. She has had fun with t-ball and playing with all her friends, it was just too hot really.
Saturday night we had some friends over to grill fajitas and watch the pre-season Texans football game. Yeah, it's football season. I don't care too much for NFL but I LOVE college football. Can't wait to watch my Aggies kick butt this year. The kids had fun playing outside, then it started to rain, but hey it's summer and a little down pour can't stop the fun. So the kids got SOAKED but had a great time doing it.

Sunday we went down to the beach to meet my 1st college roommate that I lived in the dorms with for 2 years and her family. We got down there and were shocked when we arrived. Hundreds of dead fish on the shoreline. Luckily it had just happened over night, so they didn't smell yet. This certain fish swims in schools of thousands and they hit an algea bloom that depleted the oxygen in the water, suffocating the fish. Though it was still safe to swim, I didn't let the kids in the water, so it was just a sandcastle making day. The kids had fun playing together and it was great catching up with an old friend.

Colin has now taking a liking to peeing outside and since we weren't swimming in the ocean, he had to resort to peeing in the sand

Thursday, August 9, 2012

Cousins and Cowabunga

PIZZA!! Katherine and Colin had face pairing at school
Friday night my nephew came and had a sleepover with us while my brother and sister packed up their house as they are moving and waiting on their new house to be built. So Kannon came and stayed the night with us. The kids had a blast. We ordered pizza, had a dance party, played games, watched cartoons, and read books. The only hard part was really for bedtime, we had to spilt them all up to make them go to bed.
Kannon loves the ladies, found him with all the barbies

Sunday we took the kids done to the beach early in the morning since it was already 90 degrees when we got there at 9:00am. It was a beautiful day, the kids brought their new boogie boards to test out. Then about an hour into our morning, the sky turned dark. But good news is, it cooled it off some.

We got to stay about 2 hours total when the thunder got close and it was pretty dark. But Katherine and Colin were ready for lunch because they worked off their breakfast by boogie boarding straight for 2 hours! Neither one of them wanted to get out of the water and play in the sand. They were all about "surfing" and "catching waves". Katherine did really good at getting a wave and riding in almost to shore. Colin surprised me for wanting to walk into the deeper water to catch the waves, but he wanted to be close to Katherine.. he is her shadow! 
The beach right when we got there. a perfect day!
Cowabunga dude! Getting ready for the perfect wave. But look at the sky behind them.. what happened to our beach day weather!! 
Katherine waiting for the perfect wave
Colin getting set for waves, He was having so MUCH fun!!
As the storm was blowing over us, blue sky trapped in the middle
My cool surfer dude! 
Katherine riding in a wave.

Wednesday, August 1, 2012

What's been going on?

This past weekend Matt had to work Friday evening and most of Saturday. Colin and I went to  sweated at Katherine's t-ball game Saturday morning.. never again will we do an outside summer sport in Texas!
Katherine getting the sportsmanship medal the week before.
Our friends came to visit from Fort Worth area, so Saturday evening we went to another families house for hot dogs, burgers, a beautiful trifle I made (yes I am modest) and drinks.. lots of drinks.. too many drinks. Matt has been stockpiling Summer Shandy beer as it's seasonal and wont be around too much longer. Luckily for me, he decided to share some of his stash with our friends.
Matt's stockpile.. 8 cases of beer. not including what was in our fridge
My dessert I made
It was a late night. They also let all the girls spend the night, so they had a full house all evening and night. The next day, our house was pretty much worthless! Talk about a relaxing Sunday!

Just a few of the bottles, a lot were in the recycling bin
So OTHER THINGS going on in our house:
- Colin has a pre-surgery consultation with his surgeon August 22. We are still looking at Spring 2013 for his Fontan, this appointment with discuss the next steps and will go over the actual surgery.
- Colin is counting to 13 solid, and can count to 19.. but 14-19 gets a little jumbled
- Colin knows his ABC's and sings them well, when not being paid attention to.. once you ask him, he won't preform
- Colin is doing well tracing his letters 
- Katherine is doing great with t-ball.. she mostly hits off the coach and does not even need the tee.
- Katherine is growing up so fast, wow so far I see a difference in maturity from 5 to 6.. Sometimes not always a good thing. 
- Katherine starts 1st grade at the end of the month, meet the teacher is August 23. I hope her 1st grade one is as great as her kindergarten teacher.. we loved her!!
- Katherine loves her music, she loves to turn up her cd player in her room and sing and dance
- Katherine starts soccer back up in September, so we have a month between when t-ball ends and soccer begins.
- We have tried to get the kids interested in the summer Olympics.. but no luck on that
- They both are so funny... they are always making us laugh! 

So we have just a few more weeks of summer left, we are looking at one more road trip and a couple more trips to the beach. Ready for some cooler weather to he'd our way, but that won't be until late September.