LOVE-HATE RELATIONSHIP.......

Generally I would say how wonderful my Mom is to do all she does for us.  She drops everything, puts her life on hold and rushes down every time Coop has surgery and it is so helpful and I appreciate it so much.  However, if she ever comes down again and makes 2 Meringue Pies (one being my favorite, Coconut Cream), fills our candy basket full (and it's a big basket) and runs me out of baggies from dividing up Rice Krispie Treats, I think I will have to rethink my appreciation!  I am pretty sure I have gained a good 5 lbs since she was here!!!  Seriously, it was the best Coconut Cream Pie I have ever had, notice I say "it was".

Things are going well.  Coop has been taking it easy, the best he knows how anyway, and tonight his incision looked great.  It has sealed on one end but the other is still bleeding slightly.  He asked if he could go to soccer practice tomorrow and I told him he would have to protect the incision area and not get kicked or let a ball hit it.  Remember his incision is in his groin area and his reply to me, "I always protect my penis and it's right beside it so I think we are good."  I guess I should take comfort in that but it still made me chuckle.  His next question was if he could play soccer at recess.  I asked him if recess soccer was any rougher than real soccer.  He said if they played teams it was the same but if they didn't play teams it was rougher.  I told him then if they play teams he can play but if they don't he can't play.  He said, "I think they'll play teams.  I'll tell Ben to tell them to play teams.  He hasn't played soccer since my surgery either so he'll help me."  After further questioning I found out that his buddy, Ben, has been playing other things at recess with Coop since Coop wasn't allowed to play soccer.  This is a pretty big deal because these boys ALWAYS play soccer.  It was so sweet. I told Coop how nice I thought that was and he simply said, "Yep, Ben's super nice." I love that he is surrounding himself with such great kids!!!

Tonight after Coop and I read a story and we snuggled we said his prayers like we always do.  Every since the kids were itsy bitsy I had made up a prayer that we always said so that they could learn to pray.  It is a well rounded prayer and is easy for them to understand but it is a little long.  When we were finished Coop said, "I'm trying to learn all the words exactly like you say them so I can say it with my kids. I wonder if I will have 2 boys or 2 girls or a girl and a boy."  I said,  "Maybe you'll have 4 kids."  Coop looked so confused and said "Well I guess I don't know but that'll be awhile so I will decide about it then."  He is going to be such a wonderful husband and father one day but I don't think he could ever be better than he is right now as our son.  I so love that boy!

After I left Coop and went in for my goodnight with Raelynn, she was informing me that the Farmers Almanac was predicting a cold long winter and we should consider Florida for the winter.  Yep, there is not doubt she is my mini me!  And although tonight was wonderful, she is going to give me a run for my money.  The past week she has been exhausted which leads to unfavorable behavior.  I constantly try to figure out the best way to address her when she seems unreasonable and sometimes I know that our conflicts are because we both want things done our way and there is no doubt I am hard on Raelynn.  I always have been but I am also fair.  In the long run everything has always worked out just as it should but as she gets older it gets a little harder to be one step ahead of her.  It gets harder for me to always remain calm and give her logical and honest reasons for the decisions I make for her.  Sometimes it would be so much easier to say "because I said so" but that is something I refuse to say.  I always feel like if I can't give her a reason, then I must not have one and I need to look closer at why I am making the decision or asking her to do what I am.  I have been known to tell her " I really don't know why but it is what I feel is right and unless you can make me feel different I am going with it."  But as she gets older the decision get bigger, the discussions get longer and reasons get harder.  Regardless, I find the daily challenges make me a better parent one by one but every day I just hope I doing it right.  I told Raelynn tonight that in most jobs employers give their employees annual evaluations but since being a parent is the most important job I have ever had, I think we should implement bi-annual evaluations.  This would be a time that she and Cooper could tell me how they think I am doing.  They could express what they like and what they don't like about my parenting.  They could make reasonable recommendations to me and it would just give me an idea of how they look at our family.  Raelynn thought this was a good idea so I guess my evaluations will be in October and April each year.....wish me luck!

Tonight we had one of our favorite visitors, Mary Beth!  We all miss her so much and she truly is one of the nicest and most loving people I have ever met.  I love all the Karlin's and Grandma Karen.  I owe them so much for taking such wonderful care of the kids for so many years.  They are honestly one of the brightest and most wonderful parts of the kids early years.  When it was time for Mary Beth to go, my kids weren't quite ready to let her go.....

I hope everyday she knows how much love we all have for her!!!!

AND LET THEY WEEK BEGIN.....

So we may have overdone it just a little bit.  Coop went in to take his shower tonight and says, "Um Mom, come here I think you better see this."  I went back and his insertion hole in his leg was oozing blood through the gauze.  I guess the 4 mile bike ride we took may have been a little much.  Coop and I talked and decided that maybe he should take it a little easier for the next couple days and give his leg a chance to heal.  I just hope he sticks with the plan!

Yesterday Terry, Cooper, my Mom and I went to the KU Football game.  It was a great time.  Mom loves football so she had fun too.  Coop and I hung out at the tailgating for the second half and he had a blast.  It was a great way to spend the afternoon.  Coop played catch and didn't act like anything at all had happened.  It was wonderful.

Today was our day to gather ourselves and get ready for the upcoming week.  I sat Coop down to finish his homework and write thank you's for the many wonderful things he had received.  Not one time did he complain or even wish he was done.  He sat at the table and worked away writing.  He is such a sweet boy with more patience than most kids his age.  Raelynn had a sleep over and was exhausted so she spent most of her day relaxing other than our bike ride.

We are ready for next week and I am so excited to not worry about Coop any more than any parent worries about their child.  I hope this surgery did everything they hope it did.  Everything I have seen in the past 2 days, I would say it has.

WE ARE HOME........

I cannot tell you how amazing this is!

We got home yesterday.  Coop was very tired and did very little yesterday.  Late in the day I asked him if he felt any different and he replied, "Yea, it doesn't hurt anymore."  I was so happy to hear that and also so sad to know how much he hurt before.  I put him to bed early and he slept peacefully all night.  I was absolutely exhausted as well.  I went to bed early as well and slept through all 4 of my alarms!!!  I guess I needed a little sleep.

This morning he woke up pretty well but within an hour or so was expressing that he had to go poop but couldn't.  His stomach hurt so bad.  He would cry at times and was miserable.  I felt so bad for him.  About 1pm he finally went and now has not slowed down.  We changed the dressing on his incision and he said it felt a lot better to.  He has played and played and is even speed walking now :) I cannot tell you how crazy I find all of this.  I know this will sound crazy but when you put your hand on Coop's chest you could feel the back flow of blood in his chest.  It felt so weird.  Now, you can't feel it!!!  When I listen to his heart beat now it is not near as pronounced.  It is truly crazy how once little thing can make such a difference.

Coop and Granny are now playing cards.  He is giggling and being his same old competitive self.  I love this boy!  I love his doctors!  I love all the amazing support we have received!

SETTLED IN FOR THE NIGHT...........

Wow!  What a wonderfully amazingly successful day.  The surgery went well and they were able to insert the Melody Valve.  Coop did fantastic!  While Coop was in recovery we reviewed the films with the doctors.  It is always amazing to see the films and the more we look at them the better we understand.  Prior to today there was substantial blood flow back into the Ventricle, so much in fact it nearly filled the ventricle entirely.  After surgery there was very minimal back flow at all.  In fact, what we were seeing was probably due to the cath tube.  It was amazing to see the difference.  So things went very, very well.  It is almost funny how giddy his doctor was after his procedure.  They were laughing and chuckling and just visually excited.

Coop had to remain lying flat on his back with no movement of his legs for 6 hours.  The holes where they inserted the cath tube are large and they had to make sure they did not start bleeding.  This was what came to annoy Coop more than anything.  Initially he slept a lot and then when he did wake he had little to nothing to say.  However, around 8:30pm tonight he started asking if he could sit up.  Finally about 9pm they said by 9:30pm he could sit up.  So right at 9:30 Coop says, "The big hand is on the 6!"  We couldn't help but laugh.  He was so excited to sit up, it's always the small things.

Although everything has been pretty smooth, he did have to give us one scare.  He had been awake for a bit and had drank apple juice.  He seemed to be doing well when he told me his chest hurt.  He has complained of his chest hurting for so long I asked a few questions and then told him I would let them know when the nurses came in but basically I disregarded it.  Well now, the nurse was in the room and Coop started saying his chest was hurting and it was no joke.  He was wining and wincing and then became super flush and started to shake.  This place filled with the medical team and they started running tests.  After a short time the pain subsided and everything went back to normal.  The doctors consulted and ruled out a heart attack or stroke or anything like that and decided just to monitor him.  Luckily it hasn't happened since.  He is very flush at times but we figure it is just due to the anesthetics.

The first words Coop said after surgery was, "I'm real hungry!"  I cannot tell you how happy I was to hear that!  Coop will have to take it easy through the weekend but should be good to go by Monday!  He will now be on a 1/2 aspirin and be required to take antibiotics any time he visits the dentist but that's it.  Nothing more.  We do not know how long this valve will last him but figure the conduit will wear out before the valve.  The conduit that had been placed in his heart at the last open heart surgery was 16mm.  The y placed the Melody Valve inside the conduit and the Melody Valve is 18mm.  So as you can see there is already some restriction on the Melody Valve but it should still last for some time.

Tonight we had special visitors!  Aunt Steph and Uncle Cody!  We all were happy to see them!

We are so thankful for all of this good news and cannot wait to get home!

SURGERY DAY..........

I have been horrible about keeping up on this blog lately but today is as good of a day as any to try to get back to it.  We are at CMH and Coop is currently in surgery.  They are attempting to put in a Melody Valve.  This is a valve that would fix so many of our problems and would sustain Coop for some time.  The only problem is that he is small.  We did find out today that around the world they have inserted the Melody Valve in patients as small as Coop, but here at CMH Coop would be the smallest by far.  They brought in a tech from Medronic, the company that develops the Melody Valve, to consult and help them why they are in there.  Coop's open heart surgeon is standing by but unless things go wrong he will not be needed.  The Melody Valve is amazing.  It is FDA approved but due to the limited use of it, there is different protocal as far as consent goes.  It is considered Humanitarian Use which just means there have not been enough of them done for FDA to sign off on them as a recommended procedure.  Anyway I cannot tell you how much I hope they are able to insert it.  They are doing other things as well why they are in there.  They will expand his stints and do a full evaluation.  We discussed his extremely low heart rate but Dr. Kaine is not overly concerned with that because Coop seems unaffected by it.  He said he has no explanation and finds it asymatic but as always, it's Coop being Coop.  Dr. Kaine is thrilled with Cooper and acknowledges that with Coop's rough start it is amazing to see where he is now.

Coop was crazy nervous/scared.  I really thought he was going to cry but of course he was too tough for that.  I wish I were as tough as he is!  When the versed kicked in he became silly as always.  His SAT monitor was beeping and he started beeping with it.  When I joined in the silliness he began giggling.  I love that giggle.  I did not want them to come and say it was time but of course they did.  The wheeled him off as they talked about the animals lining the halls.  He was fine, Terry and I held it together pretty well.  We now are waiting the first update to tell us he is under and they are on their way.

I am always blown away by the love we receive during these times.  Coop has been flooded with prayers, thoughtts, gifts and more love than you can imagine.  To everyone, we thank you!  There is never any way for us to express how thankful we are for all of you.  We are where we are today because we have an amazing support system and so much love!!!  Thank you thank you thank you!!!

THINGS ARE GOOD.....

What a great first couple of weeks of school.  The kids are doing wonderful.  They have fantastic teachers and their classes are awesome.  Everything is just how it should be this time of year.  Yesterday we had Raelynn's last horse show of the season and Coop had his first soccer game of the year.  The horse show went well.  We headed out about 7am and her first class the horse she was using acting up a bit but Raelynn handled it beautifully.  I am so impressed by her progress each year.  The next class went much better and she got 3rd.

 Then we had a break so we went to visit her bunny.

   

After that we grabbed lunch and headed back to the horse show.  I left around 2pm and headed home to shower then went to Coop's soccer game.  He is so stinkin' cute.  He loves playing soccer even when it is so hot out.  He played hard.  It amazes me how he can do what he does knowing the restrictions he faces.  He has improved and is aggressive.  It was super fun to watch he and his buddies.  They did lose but they gave it a great effort.  Coop went home with one of his friends from there and Terry and I headed back to the horse show.  

I had to leave right before races started because I was headed out for a girl's night at the T-Bones game.  I felt horrible leaving, really horrible.  It was her last race of the year and I was missing it.  I don't miss much and to think I was missing it to do something fun not something I had to made me feel super bad.  I asked them to keep me posted and  after I hadn't heard anything for awhile I text Terry.  The reply I received was "Raelynn fell off in barrels coming home."  Which of course triggered a hundred questions back from me.  His reply to me, "she is fine Raelynn says to chill!!!!"  Yep, that is when I know this was all much harder on me than her.  She was fine and she went on to do flags, poles and keyhole.  She completed them all which made me very proud.  Anyway, they did fine without me and I went on to have a fantastic time with friends.  These girls are crazy and I laughed so much my stomach hurt this morning!

Today we did very little.  I couldn't seem to get too motivated so unfortunately I have a little work to do tomorrow!  I love having a 3 day weekend.  Just another confirmation that we should only work 4 days a week!

Coop working out with me!

Coop and his Buddy, Chase, after swimming last weekend!