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Wednesday, October 29, 2014

GO ROYALS!!

Regardless how this game ends, it has been fun!  Everyone knows I love every sport (except Football) but when it gets to this level it is so fun!  You should hear Coop talk about the Royals and his play by play of some of the plays.  He is all about it.  Raelynn even knows some of the players names and asks each morning if they won or not.  It is all so fun.

Last weekend Mom and Chandler came down to help me celebrate my birthday.  It was awesome.  Coop had a double header in soccer on Saturday and then family pictures after that so we felt like wee were on the run most of the time but it was so fun.  Mom and I even got a few hours in for a shopping spree which is my favorite thing ever :) !

Fall sports have begin for the kids so now we have Basketball practice for Coop on Wednesdays, riding lessons on Thursdays and Basketball practice for Raelynn on Fridays.  Then they both play games on Saturdays.  It will be a little tricky these first few games as they either have back to back games or games at the same time and play are the complete opposite sides of town.  This is why Terry  refused to have another child because he said we could never be out numbered. He was so right!

The kids make me laugh every day.  Tonight as Coop was saying his prayers he ended with "The End" instead of "Amen".  He has done this a couple times so we just giggled and he said, "I forget what to say at the end.  Really does God really care as long as he knows I'm done?"  I told him he probably didn't.  Raelynn, too, has her moments.  The other night we were all outside playing catch and Raelynn decided to ride her bike.  She thought it would be fun to act like she was going to hit her brother while he was trying to catch the ball.  She was headed straight at him, she was laughing and he was pleading for her to stop.  She hit a hole or something and flew right over her handlebars.  As she landed I expected a scream and teams but ins teach she just laid there and said, "Darn Karma!" I burst out laughing and so did she and Coop.  That girl never misses a beat.

Things have been going great since Coop's surgery.  There have been no more complaints of chest pain or really anything.......until today.  I received a call about 1pm today from the school.  Coop had asked that the nurse call me which made both she and I take notice because he never tells her to call me.  He was dizzy, flush and his heart rate was down to 50 consistently.  I went and got him and we hung out until about 2:30p.m.  His dizziness continued and he would get so pale and splotchy.  His heart rate stayed consistently at 45.  Then at about 2:30 he looked at me and said it was gone and he felt better.  Within minutes he went and got his soccer ball and started kicking it around.  So just like that he was all better.  His doctor has ordered a standing EKG so if it happens again we are to go straight for an EKG and I will call cardiology in the morning to let them know.  After talking with Coop we discovered he has had dizzy spells periodically since surgery but they always go away pretty quickly.  He told his teacher this time because it wasn't going away.  I am often amazed by his poise in dealing with his various symptoms.  I appreciate his strength but also wonder how often his dizziness happens.  Anyway, we will continue to monitor him and let him lead the way in our next steps.  Everyday it is something new which makes this parenting gig one of the best jobs I have ever had.  So even though I had Coop who once again is having cardiac issues I also had a little girl who had a rough day with friends so the cardiac issues had to be set aside because we all know the day to day drama can be just as scary to maneuver.  I love them both and everything that comes with them more than they will ever understand!


Saturday, October 18, 2014

LOVING THIS FALL

I generally don't care for Fall because it just means that Winter is close and if you know me at all you know I despise Winter.  I am cold in the summer, can you even imagine how I feel in the Winter.  Then there is the fact that it is so dirty.....snow, snow melts, mud, mud comes in my house!  Really the only thing that is good about Winter is Christmas is in there.  Anyway, back to Fall, it has been beautiful and what is even better is that the amount of fun we having.  Living in Eastern Kansas over the past couple weeks has been awesome.  We have a new Football Coach (Interim) who we love and are so excited for!  The Royals are kicking butt and that is super fun to watch!  Then on top of all of that, basketball will be starting soon.  I didn't think it could get much better and then last Friday we went to our first Sporting KC game!  Tom gave me 4 tickets to the the Sporting KC game and we were super excited because Coop LOVE soccer and we had never been.  Raelynn wasn't quite as excited as the rest of us because her BFF had told her how boring it was.  Regardless we went and I told her she would have a good time or I would make the rest of her weekend miserable!  (I know, not one of my best parenting moments but I was frustrated with her attitude).  Turns out, I should have never wasted the threat.  I think Raelynn may just have had more fun than any of us and let me just say we all had a blast!  I couldn't believe how awesome it was.  We had great seats and both kids were so into it.  It was a really fun night.


Today was a 4H, soccer kind of day :)  We spent the morning at a 4H pancake feed where Raelynn had the opportunity to show her Bunny to others so she was in heaven.  I also got the information Raelynn had been begging for about Archery.  It appears we will be starting that in May.  Raelynn was so excited that I was actually going to let her do it that I didn't know if I would ever get her to stop talking.  Our wonderful 4H leader got a hold of Coop and showed him the booth about rocket building and explained how if he joined 4H he could build rockets and do archery and shooting and well, guess what, before we left Coop wanted to join 4H.  He said he doesn't want to do anything with the animals or any of that other stuff Sissy does but he would like to build rockets!  I couldn't help but laugh.  So I guess I now have 2 kids in 4H. 


After out 4H fun we headed to soccer.  Soccer is almost over for the season.  Coop has a double header next week and then is done and on to basketball.  He has played so well this year after not playing for a couple years.  He plays with an awesome group of boys and wonderful families.  I truly LOVE our community and group of friends and LOVE watching him play even more regardless of the sport.  Today was no exception.  Coop seemed a little less aggressive the first half and I am not sure why but second half he was back at it.  He is so aggressive and seems to understand what's important and what's not way beyond his years.

So I have mentioned a time or two that Raelynn is growing up and sometimes she is so great I cannot imagine how I am ever going to let her go when she is ready to leave for college and sometimes she is so moody and snappy I don't even know how to react.  Well I did some reading and thinking and come to find out that at 9 girls can start having hormone changes and this is all normal.  Really?!  At 9 it starts!  Who knew?  Anyway, once this all came to light I did some changing too.  I asked around and come to find out several of her friends Mom's had their daughters reading a book about how their bodies were changing.  Thank goodness for one of my best friends filling me in on this book.  I don't know where I had been but the day she told me I downloaded it from Amazon and introduced it to Raelynn that night.  Come to find out it was just what Raelynn and I needed.  I think as a parent it is sometimes hard to adjust your parenting to the kids as they grow up, but I am so glad I did.  I realized that my explanations for my decisions needed to get more detailed and my discipline needed to get more firm.  I also realized it's ok to let her know when she hurts my feelings or makes me feel angry and maybe then she can let me know when I hurt hers.  Anyway, although I know Raelynn is going to challenge me, we again are adjusting the sails a little bit and sailing nicely again.  Again, I love the challenges of parenting and the amazing rewards as well.

Another great couple of weeks behind us and looking forward to a couple more head!









Tuesday, September 30, 2014

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!!!!

Sunday, September 28, 2014

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.

Friday, September 26, 2014

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!

Wednesday, September 24, 2014

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!!!








Monday, September 1, 2014

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!

Monday, August 18, 2014

COOPER UPDATE….

This summer Coop has had a few "episodes" that were a little troubling and several incidents of severe chest pain so to say that we were surprised when we found out things he would be having another procedure this fall would not be very true.  We actually expected it.  On July 31st Coop went in for his 6 month appointment and they found that his valve was deteriorating quickly and there was more blood washing back through the valve than there was just 6 months ago.  That along with the other things made Dr. Kaine decide to proceed to yet another cardiac catheter.  However this one may be different.  Like always, they will go in and expand the arteries again for better blood flow and they will take a look around to see how things look from the inside.   This time however, if Coop's coronary system looks like it can handle it, they will attempt to insert the Melody Valve.  This is what we have been waiting for virtually since Coop was born.   

The Melody® Transcatheter Pulmonary Valve (TPV) is a heart valve attached to a stent (wire frame) that functions as an artificial pulmonary valve for patients with failed pulmonary valve conduits. The Melody valve was specifically designed for delivery to the cardiovascular system in a tube called a catheter.  The Melody valve contains a valve with three leaflets that are similar to a human heart valve attached to a stent (wire frame). It is designed to allow blood to flow freely from the heart’s right ventricle into the pulmonary arteries which lead to the lungs. 

The catch is that Coop is small, smaller than the smallest kid to receive it who weighed in at 80lbs.  Coop weighs 40lbs.  The risks are rupturing his current conduit, stint fractures, perforation of a major artery and a thousand other things that I cannot remember, do not understand or cannot pronounce.  However, looking at the alternative, open heart surgery, I think these risks are the most positive.  

So the way this will work is we will go in for pre-op on the 18th with surgery scheduled for the 24th.  They are bringing in a team of doctors that will evaluate things right there during surgery and decide on the spot exactly what they are going to do.  If everything goes perfectly we could be out the following day and Coop will have a Melody Valve.  If they go in on the 24th and do not think his coronary system can handle the Melody Valve, then we may be looking at open heart surgery yet again and let me tell you we DO NOT like the risks of that one.  Everything is in place in our lives from work to school for this but getting Coop ready may be a different story.  

It is always a little different each time we come up for a surgery because Coop is older and understands more and fears so much!  He has shown fear and nervousness and even expressed both verbally about his upcoming procedure.  He even asked Sissy if she would take care of Bear Bear and Blanky if he dies.  I know to most that would be devastating but for us it is just Coop preparing himself as well.  I think not knowing exactly what this surgery will hold is a little stressful as well but I know his team of doctors will make the best choice possible for him. 

Today I received a call from Cardiology stating that Coop's last dental cleaning and exam that was in late March was too long ago and we needed to have his teeth looked at again before his surgery and if he needed a cavity filled they would need to do that 6 weeks in advance.  Considering we are already inside that 6 month time frame they said I needed to get him in today and any work he needed done needed done today too.  I laughed at the thought of even getting him seen today but thankfully our dentist was amazing and assured me we would get it taken care of.  Luckily Coop had no cavities so the check up was all we needed.  

As always, we are surrounded by so much family and so many friends I feel like we walk on air most of the time.  We have to be the luckiest family alive, but we still are happy to take any extra prayers anyone might have!

Thursday, August 14, 2014

SO MUCH FUN….



LOOK AT THIS CUTIE WHO TURNED 2!  

AND 
LOOK AT THIS BEAUTIFUL LADY WHO TURNED 97!



Last weekend we headed out to Western Kansas to pick up the kids and celebrate my nephews birthday and my Grandma's birthday.  There was so much family there and we had a great time.  Coop has so many boy cousins and he is not used to that with our family of all girls.  I think he was in heaven!  Hunter had a fun birthday and is so cute.  He is horribly ornery but adorably cute!  A good mix I think. My Grandma is amazing.  She is still super sharp and gets along pretty well.  We played cards and just enjoyed every one's company.  My kids could not have been happier.  I am convinced they think Grandma's house is their own personal resort.  They are spoiled rotten but I love the fact that they get so excited to spend the week there.

 


This one is adorable as well, Hadley loves her cousins!
Hunter loved his birthday cake!
After we returned from Mom's the kids and I had a day of fun.  This has became a tradition that I take a day before school starts where we head to Kansas City for a day of fun and shopping.  Each year the kids get a new Build-a-Bear and we get their school supplies and other things they need.  The kids look forward to this day all year and we do have a great time.


 After out fun at the mall, we were starving so it was on to Fritz's.  The day was complete and we had a great time together.
When we got home we talked Terry into a bike ride.  I love this time of year!

 Tuesday was a crazy day.  I also took this day off to fulfill all of my PTO responsibilities.  It was a fun and hectic day.  We hosted a luncheon for the teachers and staff and then had an ice cream social for the kids.  Then before we knew it, Wednesday came and it was time to start school.  I am so proud of both of my beautiful children.  We are so fortunate to have them.  They both love their teachers and their class.  It seems it is going to be a very good year.  When we got to school and walked in I told Coop we would take Sis in to her classroom and then go to his.  He never stopped walking and just looked back at me and said, "It's all good, go with Sis." and he walked right down the hall to his classroom.  He is so independent and confident.  Raelynn grabbed my hand and directed me to her room.  She at least still needs her Mom a little!





Monday, August 4, 2014

EMOTIONS…...

Sometimes I have so much to say but really don't have enough time to say it so I just sum it all up and post pics that really tell what we've been doing.  However, tonight is a little different.  I still have so much to say and not enough time to say it but this time pictures just won't tell the whole story.  Life is full of emotions and I think they were all wrapped up in the past week……

So I left off on our last post as we were headed to CMH for Coop's cardiac appointment.  All I wanted was answers and we did get some.  The problematic valve that Coop has is leaking more now than it was just 6 months ago based on what they are seeing in the Echo.  We have always struggled with this valve as it has been worked on several times.  In order for the doctors to really be able to see what is going on in there they are going to do another cardiac catheter.  If you remember this is where they thread a long flexible tube up through his groin and up to the heart to get pictures of what is really going on in there.  This is an exploratory catheterization and used for diagnostic purposes.  However, his cardiologist thought they should take it one step further and be prepared for a surgical catheterization and be prepared to insert the Melody Valve if Coop's coronary system can handle it.  This valve is what we have been waiting for.  It is the first FDA approved Transcatheter Pulmonary Valve.  It is inserted through the flexible tube (catheter) and placed in the heart.  If able to preform this procedure it will eliminate the need for open heart surgery for the time being and potentially for quite a few years.  The scary part is that the catheter has to be fairly large and there is question whether Coop can handle this large of a catheter without fear of rupturing a Major vessel or worse.  The other scary part is that if his coronary system is not strong enough for the Melody Valve then how long can we prolong things before we have to have another open heart surgery?  If we were to have open heart surgery again it would be Coop's 4th in 6 years and those are not very good odds when you start looking at survival rates taking into account the scar tissue and other issues that arise from multiple open heart surgeries in a short amount of time.  Therefore, I have to say I am a little nervous this time.  Coop is as well.  The older he gets the harder some of the details and emotions about surgery and treatments get.  Coop knows everything is not alright and he knew when we went on Wednesday there were probably going to be some discussion as to what comes next.  He was very fidgety and at times acted very silly.  He was still wonderful during his testing doing exactly as they asked and even telling them where to put the "stickers" for his EKG but once Dr. Kaine entered the room he was nervous.  As we were all talking about what we may or may not do Coop said, "or we could not do it."  It made me sad because he so gets all of this now.  He has told me a couple times since that he does not want another surgery and I just remind him that I don't care to have another surgery either but that we will do whatever it takes to make sure he is here every night for me to snuggle with.  So that is where we are at; waiting for Margaret to call from scheduling and get us on the books.  Then we will start the waiting game, the game of trying to get every pound we can on Coop and the game of trying to avoid all illnesses!

Thursday I took the day off to spend at the fair watching Raelynn in her Rabbit Judging.  She made me so proud not in the ribbons she received but in the way she received them.  The girl is so in her realm there.  It is astonishing to me at how her passion gushes from her ever movement, every smile and every word spoke.  She had an amazing week at fair and did so very well.  I also cannot say enough about our amazing club leaders.  These people embraced Raelynn like she was there own.  They taught her so much and gave her such a wonderful experiences.  I really cannot say enough about this wonderful family.  There is no doubt in my mind that we found the best club in town!!!





After a long week it was finally Friday and web were headed down to Tom and Jan's at the Ozarks for the weekend.  Right before I left for work we got a call from Aunt Bonnie.  Charm, the horse Raelynn learned to ride on and the horse that everyone loved so much was going to have to be put down after a quick illness.  There were tears from all of us.  It wasn't until late Saturday night that it really hit Raelynn thought.  We were down at the lake and she had been in bed for a bit.  I saw her get up and I went to check on her only to find her crying hard.  She said she was saying her prayers and Charm just came into her head.  She said she was trying so hard not to think about it.  Her tears were not just for her loss but for Aunt Bonnie's and her cousin Megan who all had a special bond with Charm.  It was truly heartbreaking to watch her feel the loss of an animal and one as special as Charm made it even harder.  I finally convinced her that maybe now Nanny was in heaven riding Charm and she should be happy for them both.  This seemed to comfort her greatly knowing that Nanny and Charm were together.

Besides that sadness, We had so much fun.  Terry and I relaxed why Tom and Jan tended to our kids, Lol!  Really they did entertain them entirely.  We had a great time and only wished it could have lasted longer.  Thank you so much to Tom and Jan for opening their home to us and seeing to it that we had a fantastic time.  (Don't worry Jan I won't include how you caused me to sprain my wrist and bruise my knees, hahahaha).













We came back on Sunday and then the kids headed back to Western Kansas with my Mom.  I hate seeing them go.  I know I should enjoy my time alone and tonight as I ran a billion errands and didn't get home until 8pm, it was slightly nice to not hear anyone say "I'm hungry!" but that does not make up for the silence and emptiness of the house for the rest of the evening.  Those two make me laugh and bring so much happiness that is all just seems a little more boring without them.  I'm already counting down the days until I see them again.  Luckily I have some great friends that will keep me entertained while they are gone and MAYBE even Terry and I will take a little time to relax together.

Tonight and every night I thank God for giving me more love that I deserve and giving me more to love than I ever knew was out there!