CHRISTMAS FUN.......

Christmas is all over and that is always so sad.  I wish the Christmas excitement could last all year round!!! We headed out to Mom and Dad’s on Thursday night.  We got a very late start and ended up getting in to their house about 3:30am.  We unloaded and off to bed.  The kids absolutely LOVE being at Granny’s house. Karli got in on Friday night so the family was all there except Steph and Cody.  They did not make it out for Christmas this year which was pretty sad.  My kids really seemed bothered by that but it is hard for them to understand that not every year will we all be together, it’s hard for us all to understand or at least accept. However, we are just all very blessed to have families that want to all be together.  We spent the next few days resting, shopping and just spending time with everyone.  It was fantastic.  As I get older I seem to cherish the time we spend together more and more.

Raelynn, Granny and I spent one day shopping in Garden City, which was filled with laughter.  We laugh a lot, mostly at the expensive of someone in the family but it is truly all in good fun.  We got manicures, finished shopping for some last minute gifts and hit Sam’s for the outrageous amount of food we eat!!!  It took us all day Sunday to recover from our shopping trip the day before.  Sunday also called for full body massages our Mom gets us almost every year.  There is a wonderful masseuse in Scott City that my Mom sets up massages for all of us with.  She is fabulous and has become one of my favorite gifts!

Monday was Christmas Eve of course, which was filled with cooking and again lounging around.  Christmas Eve is our big celebration.  We start the evening with Christmas Eve Service at church and then come home to soups and snacks deliciously made to feed the entire community J.  Then it is time to open gifts.  This year I was most excited about Raelynn’s gift.  She has wanted an iPod Touch for over a year now and has been saving her money to buy one.  Terry and I deliberated a long time about whether or not to get this for her but finally decided we would after researching the parental controls.  We got it a few months ago from Apple and had it engraved, Raelynn Audrey Keefer a.k.a. Sweetpea/Peanut.  I always call her Sweetpea and Terry calls her Peanut.  She was sooooo excited to receive it and I had it all set up after a trip to the Apple Store in Leawood where they help me get it all ready and “safe” for her.  I had loaded her favorite songs and Taylor Swifts new album “Red” on it.  Anyway, needless to say she loved it.  What really made me melt wasn’t when she said Terry and I were the “best parent’s in the world”, or when she said thank you a thousand times, or when she hugged me for the hundredth time but it was when I was putting her to bed and she said, “Mom my favorite part of my iPod Touch is that engraving on the back.  Whenever I turn it over and see that it reminds me of you and Dad.”  I love that the little extras are what means the most to her.  It makes everything, the cost, the extra time the research, worth every bit of it and more.   Coop scored pretty well too.  He got a Spiderman that shoots webs, a car that turns into a plane and a remote control helicopter that shoots discs.  Terry and I set him up with an outdoor basketball and ball, which he liked as well but until we are out on the driveway playing ball, he won’t get the full affect J.  Terry and I received amazing and wonderful gifts as well but still feel that our 2 kids and wonderful families are the true gift.  Every year though there is still so much excitement in opening packages.  If you like surprises you cannot help but love opening presents.   I was once again spoiled with gifts.  My sister’s and I and our spouses draw names now that our family is growing.  Karli got me this year and she got all my cupcake trays and holder and spatulas and some amazing perfume.  She has gotten me every year since we have been drawing and always spoils me like crazy.  My Mom and Dad set me up with new pots and skillets, which I needed horribly, and a 3 in 1 slow cooker.  They also gave Terry and I a ½ of beef, which translates to enough beef to last the entire year!  This is an awesome gift!  I also got many other wonderful things and could go on and on about my GC to Maurices and slippers and on and on.  Terry also spoiled me big time by surprising me with the iPhone 5!!!  I live on my phone and have wanted the iPhone 5 but knew better than to ask for it as I am hooked up well with technology.  He knew though and it is awesome!  It has some great features my old iPhone did not and a pink case so who can beat that.  So as you can tell ……SPOILED all the way around. 

Christmas Day we spent at Sherri’s.  Aunt Barbara usually joins us Christmas Day but the weather kept her away.  We had a wonderful Christmas Dinner and the day flew by.  Now we are headed home and back to work tomorrow.  It will be nice to be back to a schedule but it sure has been fun relaxing too.  The next 2 days will be a little crazy as I have babysitters coming in for the kids which we have never done before but after the first of the year it will be all back to normal. 

I hope everyone had a wonderful Christmas and remembers how fortunate we all are for what we have!!!

WHO KNOWS?

EVERYONE IS GETTING IN THE SPIRIT!

RAELYNN DANCING WITH GRANDMA'S SANTA

COOPER AND RAELYNN

CHANDLER, CASSIDY AND HUNTER

MOM, DAD AND WE 4 GIRLS (SORT OF)

THE KEEFER'S

KRISTI AND KARLI IN THEIR FOOTIES!

COOP AND HUNTER

COOP PASSING OUT GIFTS!

WOOHOO, POLLY'S, WE HAVE MADE IT 7 YEARS WITHOUT POLLY'S BUT I GUESS AUNT SHERRI COULDN'T RESIST ANY LONGER!

RAELYNN AND HER NEW IPOD TOUCH 5

MOM SHOWING HER THE ENGRAVING

CHANDLER AND HER GIANT HERSHEY'S!  THE GIRL LOVES HER CHOCOLATE!

RAELYNN GIVES GRANNY ANOTHER PIECE OF HER ARTWORK!

HO! HO! HO!

DO YOU THINK THEY ARE TEXTING EACH OTHER!

TERRY GETTING HELP FROM RAELYNN, HAHAHA!

GINGER BREAT HOUSE!

OH NO!  COOP'S TALING WITH HUNTER

POOR POHO!

TERRY STARTED HERE AND TRIED OUT EACH PIECE OF FURNITURE

BEFORE THE FUN BEGAN!

ALL SETTLED IN......

Wow these days are long and emotional but we are now on the 4th Floor and all snuggled in for the night.  Coop's surgery went very well.  The conduit/valve is not holding up as well as they had hoped.  Our cardiologist, Dr. Kaine, did call our Cardiac Surgeon, Dr. O'Brien, down during the procedure.  Fortunately they both agreed to do what they could with the conduit that is there and when they can't work with it anymore than we will have to look at other options.  Today they did put a stint in the conduit to open it up.  The pressures in the right atrium were pretty significant and after the stint was put in place there was a significant drop in pressure which is exactly what they wanted.  We actually were given internal pictures to bring home this time which was pretty cool since Terry and I have been at this long enough we kind of know what we are looking at :).  So all in all they have him fixed up pretty well for now but of course over the years there will be more to come.   The really encouraging word is that they are making huge advancements in what they can do through the cardiac catheter.  Even what we did today they would not have been able to do by catheter a few years ago on someone as small as Coop.  Dr. Kaine said that Coop will definitely benefit by medical advancements on congenital heart defects in his life time.  That is exactly why we always give permission to use Coop in research studies and participate whenever asked.  The advancements are amazing.

We were reunited with Coop this afternoon.  I was a little concerned when I saw him because he was VERY pale in color.  He is always very passive and almost confused as he comes off the anesthetics but he drank and ate right away.  He just took his first steps a little bit ago and did a great job.  He has already had his Echo to make sure everything is looking good and will have a chest x-ray in the morning.  After that has all been reviewed we will be dismissed which is music to our ears.  They have him on antibiotics now because of the stint that was put in place and he will be on aspirin for the next 4-6 weeks.  We are also reminded how sensitive Coop's skin is.  Terry and I often talk to our medical team about how easy he bruises but today just reinforced his sensitivity.  In one small place on his back shoulder where they had a line in that was just precautionary and never used, he is bruised and his skin is tore from the tape.  On both his heals, in the few hours of surgery he developed bed sores.  The skin on his eyes is red, chapped and irritated and when we asked the cause of this we were told they tape his eyes shut during surgery and once again the irritation is probably the tape.  Now we have been through 3 surgeries, multiple catheters and several other procedures yet never do I remember knowing they tape his eyes shut!  However, I think I can understand why they did not volunteer this information.  So as I sit thinking about Coop's day I think about what the surgical room is like and realize it is a really good thing they do not let parents back there.  From what we have been told over the past 5 years about the surgical room.......the temperature is dropped significantly to preserve the organs, lower the blood flow, and slow the body functions.  He lies on a metal table with no clothing.  He has a breathing tube, multiple IV's, numerous monitors and a bunch of strangers completely covered other than their eyes and nose standing above him.  Today we add to the list, eyes taped closed.  I do not know why I paint this picture for myself but I do after every surgery, after every small detail that is disclosed to us.  And after I think about how cold and alone he has to feel, I am reminded he is not alone at all but rather holding God's hand the whole time.  It really is comforting.  The nurses have been in several times tonight to look at Coop's sores and are all amazed that it happened all in a day.  They also have confirmed a couple times that his low Heart Rate is normal for him.  I am so glad I am here to make sure that he is well taken care of and makes me sad for the kids that are left alone.

My bed moves up and down!!

Raelynn loves the hospital food!

Tonight Coop missed his Christmas Sing at his preschool.  While I was updating this blog I received a text with a picture of his class blowing him kisses with the caption, "Kisses to Cooper!"  And as if that wasn't sweet enough, a little later I received a video from his school.  At the Christmas Sing ALL the children on stage said Hi to Cooper and then sang to him, "Be Strong, Be Courageous, Do not be afraid , God is with you where ever you go!"  I played the video for Cooper and for the first time I think he felt the love people have for him.  He smiled the whole time but his eyes swelled with tears.  I didn't know whether to let him have his moment or ask him if he was ok.  Instead I smiled at him and reminded him how special he was.  He hugged me and berried his face in my lap.  I knew exactly how he felt, overwhelmed with love, as I have felt the same way all day!

SURGERY DAY....

I know most of you are waiting for an update on surgery so I will start there.  We arrived about 7am and Coop went into surgery about 8:45am.  He was doing great!  He is really quite amazing when it comes to all this.  We received a few more details about today's procedure.  Coop has a partial blockage in the conduit/valve the placed in his heart  1 1/2 years ago.  They cannot tell from the Echo whether the blockage is scar tissue or something else.  The plan is to balloon this area out or if necessary to insert a stint in the conduit.  They will also do a little exploration to get a good look while they are in there.  Every procedure we have, it is amazing the advancements they have made.  They now do a 3D imaging while in there that gives them greater details.  We also discussed other procedures that Coop will likely have in the future and even in the past 2 years they have advanced in such a way that some may be able to be done with a surgical cath like today which is great news!!!  The issue of his low heart rate is still in question but time will tell more about the cause and course of treatment.  What they are doing today and looking at today will not address that issue.  Today's surgery is consider low risk although his cardiac surgeon, Dr. O'Brien is on standby if needed.  Today's surgery is performed by his cardiologist, Dr. Kaine.

  UPDATE:  They just called down and Coop is asleep and the IV's are in.  He did get a little nervous but the amazing nurses talked to him about his Lion, Courage, and how brave he needed to be and he did just fine.  They are getting their first pictures now.

This morning went well.  We didn't wake Coop until we were almost ready to walk out the door.  He woke up well and didn't hesitate at all.  Steph came over at 6am so she could take Raelynn to school.  She also agreed to take my place and read to the kids at Deerfield this morning.  I don't think she knows how much that meant to me.  I really love starting every day with Raelynn at her school and talking with all the kids.  It meant a lot that Steph would fill in for me because I knew the kids would receive the same love from her that they get from me to start their day!  Steph said it went great and I received a couple texts from staff saying the same.  Thank you so much Steph!  I love you!!!

Coop and I drove separate from Terry since he will go back to Lawrence tonight to be with Raelynn.  Coop was VERY quiet.  I asked him if he was doing ok and he said he was a little nervous and then said, "maybe a little scared too."  As I drove I literally choked back tears.  Then my thoughts wondered to previous surgeries and his time on ECMO and everything else he has been through.  I cannot tell you how wonderful Coop has handled it all, Raelynn too.  We have been given the most wonderful, adaptive, loving children anyone could ever ask for.  We arrived at CMH and Coop never looked back.  He was brave and patient and the perfect kid all the way to surgery as always.

Leading up to today we have had so much holiday craziness to keep us busy which I think was a great thing.  Friday, Raelynn woke up with a terrible stomach ache and felt like she was going to be sick.  Of course this was not good news for so many reasons. First and foremost Coop could not get sick.  Second, it was also my last day of work before 7 days off with Coop's surgery and then Christmas.  She was amazing though.  She let me work for a few hours in the morning and a few in the afternoon with absolutely no complaining.  I had so much to get done and as things go, I was able to get twice as much work done from home than I would have at the office so I actually felt more comfortable leaving than I would have.  When I picked Coop up from school on Friday, his last day before surgery, he was there with so many thoughtful gifts I was overwhelmed.  His class made him a book that they all drew a picture and wrote what they liked about Coop, his art teacher gave him an entire bag of art goodies and a homemade nativiity scene, the list went on and on.  His teacher dropped off a bag for both Raelynn and Coop which Raelynn thought was very special and I so appreciated.  Terry and I always make sure Raelynn is not overshadowed during these times but as Coop gets older and has so many loving friends, it gets a little harder. The gifts continued to pour in over the weekend all things he could use at the hospital and even a special Mickey Mouse that was autographed and came all the way from Disney World with one of Coop's preschool friends who had been there last week.  It was all so touching and I know Coop felt special.  When he is older and looks back at all of this, he can't possibly feel anything but amazing.

Saturday rolled around and we had a birthday party to attend for friends we do not see often anymore.  It was great to see everyone.  Then Saturday night we had a surprise visit from Santa Claus!  It was a big hit!

Sunday I had a Baby Shower (Sprinkle) for one of my really great friends and then wrapped up Christmas shopping while the kids were home having a free for all with Terry.  I say this because they made there own lunch about 11am which consisted of Blueberry Pancakes and pepperonis.  This is the report I got when I called about 1:30 to see if they had had lunch.  Lucky for them I do not leave them often, hahahaha!  Anyway, Sunday afternoon we headed to Steph's to celebrate her birthday.  It was so much fun!  I love just hanging out with my sisters.

Monday we kept Coop home from school as per doctors orders.  He went into the office with me most of the morning and then we did some Christmas gift deliveries.  We picked Raelynn up after school and headed to Orange Leaf as per Coop's request.  I had asked him earlier in the day if he wanted to go get Orange Leaf but he said, "Sissy would not like it if we went without her."  He is such a sweet boy and ALWAYS thinks about his sister.  So we waited until we picked her up and away we went.  The two of them were inseparable yesterday.  It was obvious someone was a little worried about her brother.  Thank goodness I had 101 things to do last night.  I had cookies to make for Coop's preschool and peanut butter balls and chocolate pretzel sticks to make for Raelynn's.  Both I had signed up for before knowing about Coop's surgery but I was glad I had it to make my night shorter.

I am so excited to be past this surgery and onto Christmas.  I am so excited for it this year and I don't know why.  I guess the thought of multiple days just hanging out with the best family ever is enough to excite anyone!!  Raelynn loves Christmas as well and as much as she loves getting presents she seems to really love the family time and the true meaning of Christmas.  She talks about it often and the other day I found this in her backpack.  Inside the card was signed by several of her friends and classmates.  When I complimented her on it she said, "Yea, all of my friends that I told about Jesus and his birthday signed his card!"  She is a better disciple than I will ever be :)

Our elf has continued to be busy as well.  Between the elf and the 12 Days of Christmas gifts my nightly duties are getting a little longer.  But seeing the kids faces in the morning make it all so much fun!!!

Leaving a note....

Aunt Bonnie's elf, Curly, came to visit!

PRE OP.....CHECK

Today we had our pre admission appointment for Coop's upcoming surgery on the 18th.  The appointment went just fine but we had one nervous boy.  He could not hold still for anything.  He was not crazy or misbehaving but he was up on the table, down on the table, up on Terry's lap, down, up on my lap, down...........and on and on.  The appointment was long and boring for him but it is amazing to realize how much he remembers and comprehends from the past.  The nurse and doctors simply say, "Ok Cooper let me check you out" and he jumps up on the table, lays down and lifts up his shirt and lies perfectly still not making a sound.  He is a wonderful patient.  His stats were all good but still a very low heart rate.  We are still in the dark as to why his heart rate is so low but hopefully we will have a few more answers after his surgery on Tuesday.  I have to say that it is like a reunion when we have appointments like these when we meet with the surgical team.  We saw our very favorite surgical nurse today and she came in hugging and oohing and awing over us.  I can't tell you how nice that is.  They also are familiar faces to Coop which is also nice.  She recognized Coop's anxiety and brought him a little something, Courage the Lion.  It is a special stuffed animal that has a little pouch in it's tummy that has a heart and a worry stone inside for Coop to rub if he gets scared.  Coop LOVES Courage.  Courage has not left his side since.

Coop's upcoming surgery, in our world, is miner.  They will be doing the procedure through a cardiac catheter which means it is NOT open heart surgery.  They will be doing angioplasty in various areas and exploring to see what else might be going on.  We are their first case on Tuesday morning so we should be out the following day if all goes well.  The biggest factors this time have been keeping Coop's exposure to illness minimize for the weeks leading up to surgery and reducing his chance of infection post surgery.  It has been recommended several times that we pull Coop from school and daycare to reduce his risk of exposure to illnesses but we declined because we feel Coop's emotional well being is as important as his medical well being.  Coop is a busy body who loves his friends, loves school, loves daycare and would have been terrified and nervous if I had tried to keep him at home for the past 2 weeks.  Our surgical nurse agreed today which was reassuring.  We will call Friday his last day as Monday will also be an important day to chill and rest for him.  Coop himself has been a completely different situation to deal with as well.  He is able to express himself so much more now than he did at 3 1/2 years old when he had his last procedure.  He also remembers things we never dreamed he would remember.  Last night when I was putting him to bed he said, "Mommy can the give me that drink that makes me silly and makes you not cry so much?"  Of course he is talking about a medicine they gave him prior to surgery that just makes him silly and is suppose to keep him from remembering anything.  Because he doesn't cry when they take him, I don't cry either.  I told him we would definitely request it!  He has asked almost nightly when we say our prayers to pray that he does not die at his surgery.  Then tonight he asked if we could pray that he would not be afraid.  It all pulls at the heart strings but also makes me sooooo proud that he is able to express in words his feelings.  He is such an amazing little boy who gives me my strength and more.

Coop's surgery is also on Raelynn's mind.  She was so happy to see her brother today when we picked her up from school.  She waited until Coop was out of ear range and then whispered, "How did his appointment go?"  I let her know things went well and reviewed with her some of the things we have to do from now until Tuesday to reduce the risk of infection.  Then she asked if he was scared.  I let her know he was a little nervous but did really good.  She said, "that's our Boo (our nickname for Coop), I will talk to him tonight about it."  She goes so into mother mode at times I am astonished she is 7.  Besides her wonderful relationship with Coop, I love her understanding of what is important.  Tonight I was cleaning out her book bag and found this......

When I opened it up the card was signed by several students.  I asked her about it and she said, "yea, I made the card and then when I was telling the other kids that Christmas was really Jesus's birthday and how the presents just represent the gifts brought to Jesus, they wanted to sign the card too."  It made me smile, her confidence shined.

All in all it seems we are ready to go next week and I will be so happy when this is in our past and Christmas is dangling in front of us!!!

By the way.......our little elf sure is causing some problems this year....

WAS THAT A WEEKEND?????

What a weekend filled with firsts!  Friday night the kids and I went on a hunt for some dress shoes for Raelynn to go with her Christmas dress.  After 5 stores, 3 hours and a little complaining from Coop we finally found the perfect pair.  The urgency was for the Christmas outfit was because Raelynn had been invited to go to the Nutcracker Ballet with her sweet friend, Jackie.  She was sooooo excited and I think I was equally excited!  I love exposing the kids to the arts and this was something I had never seen either.  What made it even better is that her wonderful friend that invited her had a little more insight than the average attender. Her Mother had danced in this very performance from the age of 7 to about 16.  They picked Raelynn up about 4pm and the girls got all dolled up together, then out to dinner and then to the show.  Raelynn had the time of her life and I was so thankful for such a wonderful family to invite her for her first ballet.  They didn't leave Coop out of the excitement either.  Jackie's little brother is on the same soccer team with Coop and they have gotten to be friends through that and since Raelynn and Jackie are such good friends.  So he invited Coop to hang out for the evening and to spend the night.  This was Coop's first sleepover and he was equally excited as Raelynn.  He did abosolutely great and had a great time as well!  Terry and I were a little lonely but Terry almost has the deck done and I almost have my Christmas shopping done so it was a successful night for us all.

Sunday we headed out to Bonnie's to make some Christmas candy.  I used to do this every year with Sherri when she lived in Kansas City but have kind of missed it over the past several years.  Carol joined us as well and really had a good time!  I also ended up with more than enough candy to make some great candy trays.  Coop also got his birthday gift from Aunt Carol, a remote helicopter.  This ended up being a gift for us all.  It was so fun to play with!!!

Hunter visits Santa!

With all the excitement of the weekend, we were hardly ready for Monday morning but it came anyway.  I have to wrap everything up this week and weekend as next week we will have Coop surgery and be down for a few days.  I would rather not think about that quite yet as Coop is worrying enough for all of us!

Besides the cutie to the right, Coop and Raelynn were pretty cute at their re-enactment of The Little Rascals.