Benefit in Bedford

We are having a busy weekend here in St. Louis.  I have some more pictures but I will try to post later when I have more time.  We have had lots of visitors.  Maryville Spoofhounds will be playing here at the dome for the class 2A State Championship today.   We wish them luck.  We thought about going but like I said we have had lots of company and the kids are trying to catch up on homework.

I am posting about the Benefit for Kyle they are having back in Bedford  tonight.  Many of my family have asked me about the details when they have called.

It is at the Legion Hall.  Meal and Auction start at 4:00pm.  Menu includes pulled pork sandwiches chips, baked beans and side dishes.  The Dance starts at 7:00 pm with music by Dennis White, Brook Turner and friends. I wish the kids and I could be there.  I know it will be a lot of fun, especially that my family and the Bedford community will get to meet each other.  For those of you going, have a good time.  We are so thankful for all of you and your love and support.  I hope someone takes some pictures for us.  We will be thinking of all of you and wishing we were there.  If we get a call about a heart for Kyle while you are there we will let you know.

Happy Thanksgiving

Happy Thanksgiving from our family to yours.  Our family is a little short today.  After a long discussion Kenton and I decided it would be best if he didn't come down for Thanksgiving but stay home and try to finish getting our crops in.  It was a hard decision but when we get the call for Kyle's new heart Kenton will need to stay here longer and if he can get done combining now it will be one less thing for us to worry about. I miss him so much.  It has been several weeks since we have seen him and it seems like even longer. This morning Jess, Kyle and I went to the Cathedral for Thanksgiving Mass. We were able to get a few pictures afterwards and a nice lady offered to take a picture of the three of us together.  

These pictures at the Cathedral do not do it justice and I hope to go back when we have more time and take a few more.  I have really fallen in love with this place.  Everything about it is beautiful.  

After eating our turkey dinner the kids spent the afternoon playing video games, reading and they watched a movie. Jess is teaching herself to crochet and is doing a good job at making a scarf.   I tried to do some scrapbooking.  Jess brought down a few more supplies from my stash.  I have been working on this little tag book about this Thanksgiving and what we have to be thankful for.  I thought it would help remind myself when I am feeling down that I am truly blessed.  I have good friends and family, a roof over my head, a warm bed to sleep in and food to eat.  And we are lucky to be in a place where talented and amazing doctors and nurses can help Kyle and make him better. Soon he will be better and we can go back home.

I hope you all had a blessed and peaceful Thanksgiving.  We are all so grateful for all of the support and love you have sent this way.

Tuesday November 25th

The kids are still sleeping in.  They stayed up late last night playing video games and cards.  They enjoy making fun of my video game skills. I will have to get them up soon to get Kyle's morning meds in.  It has been great to have Jessica here.  I feel like we have so much catching up to do as I have been gone from home for so long.  

Kyle has started a new puzzle.  It has a John Deere tractor on it and he loves that.  Not just John Deere but anything farming.  He always has.  I remember when he was two he asked Santa for a toy John Deere combine.  My parents got him one and when he opened it he was so excited.  He couldn't say combine at the time and it came out "congine!"  When he was four he had a John Deere video that he would watch over and over.  That Christmas he decided he wanted a John Deere cotton picker.  I had no idea where I was going to find that at living in Northwest Missouri!  I didn't have the wonderful world of internet then.   They are used more in the south.  I was dating Kenton at the time and somehow Kenton managed to find one for him.  He still has it on his shelf at home in his room.  

Kyle has started thinking about his "Make a Wish".  He has thought about a sporting event but thinks it would be only a couple of hours and be over.  So right now he is considering some that involves hunting, fishing or camping.  He loves to go camping and fishing.  This was going to be the year he was going to get his hunter's safety and go hunting with family.  I told him he can do it next year and he will be a bigger boy and be able to carry his gun better.  Got to admit I'm not so keen on the idea being a nurse and worrying about safety and all but I am sure I will adjust.

Kyle's cousin Holly has been going deer hunting with her boyfriend quite a bit lately.  Holly, we expect pictures when you get your first deer!

I'd better sign off.  We have a busy day as today some of Kyle's meds will be delivered and I will need to change his IV bag in his pump this afternoon.  We are wanting to get Jess out and about to see a little of St. Louis also. 

Fall is Ending and Favorite Things #5

Sad to say this is about the only fall picture I have taken this year.

Usually at this time I have taken many more.  Kyle and I both feel we have missed one of our most favorite times back home.  It has been a yearly tradition in the past to go out and get some pictures of Kenton on the combine harvesting.  Kyle loves to spend times riding in the combine with him and also enjoys getting to drive now and then.  When Kenton is combining near the house I usually go and ride with him for a little when I have been out to get pictures of him and Kyle.  Our dog Ralph runs along side.  Although he is getting up there in years.  He is nearly deaf and doesn't see as well either.  Our favorite cat, Sam, sometimes follows along with me out to the field.  This year Kyle and I have both missed out.  I talked to Kenton this morning and harvesting is slow.  It has been a rough year and way too wet.  I understand that is what everyone is facing.  Kenton was broke down this morning and was headed to Clarinda for parts when I called.  Rich O'Grady and his nephew, Roger have been helping Kenton. He is going to help them also.  For that I am thankful.  He hopes to get done soon so if we get the call to the hospital he can come down and stay for a little longer.  I have encouraged him to take a few pictures with his camera for me.  Got to have those pictures to put in our scrapbook!

 Favorite Things #5

Mary Janes Farm Magazine

Kenton sent some of my mail out with Jessica.  This is one of my favorite magazines.  I love to read and since Kyle got started getting sicker a few months ago I have let most of my subscriptions go to help save money.  I am still getting this one though and love it.  It has a lot of organic farming in it which, goodness, I don't have time for, or really a desire for, but I love the other articles which relate to farm girls.  It has a lot of projects and sweet stories.  It talks a lot about a simpler life.  (Speaking of organic, Kyle had organic chocolate milk at CMH in Kansas City when he was a patient there.  He really didn't like it. He said it tasted funny and it looked really pale.  I refused to try it.  I love milk and didn't want to ruin that) Anyway, it is a neat magazine for a farm girl.  Website for it is here: www.maryjanesfarm.org 

Other exciting news for today.  In the mail Kyle got a autographed picture of Brandon Marshall, Denver Bronco's wide receiver.  He is one of Kyle's favorite players.  We don't know who was responsible for getting it but thank you so much.  If it was you, let us know, Kyle would love to thank you.  He was so excited to get it!

I want to again thank everyone for the cards, gifts and donations we have received, including those of you who have remained anonymous.  Your out poor of generosity has amazed me.

I only hope I can someday give back what has been given to us.  Although this waiting has been difficult for us, Kyle told me the other night, " I know it has been bad, but I've liked all the time we have together now."  I have liked it too.  He continues to amaze us all with his strength and outlook.  

Weekend Visitors and Favorite Things #4

Kyle and I were so excited to have some friends arrive on Saturday.  Four of my friends that I went to high school with made the long trip to come out and visit.  I have actually known them since we were little and started kindergarten together.  Judy Eckstein Henry, Sandi Strueby Walker, Brenda Schieber McQuinn and Brian Madden are pictured with me below.  We had such a great time and I will never forget it.  We enjoyed a nice visit and I laughed so hard that I thought Saturday night that I had pulled a muscle in my side!  Seeing them made me feel like a part of home was here with me.  If you are going through a difficult time here are four people you definitely want on your side.  

Judy and David's daughter, Danielle Henry came with them.  They also brought our daughter Jessica with them.  Jessica is going to stay here with Kyle and I at least until after Thanksgiving.  We have so missed her and can't wait to spend some time with her.

Kyle's best friend, Colton Townsend, came with his parents, Ed and Connie.  Kyle couldn't have been more happy.  I don't think Kyle has laughed so hard in weeks and had so much fun with Colton here.  They have been talking almost every night on the phone.  Kyle is very lucky to have Colton and Colton's parents in his life.  They care a lot about Kyle and are such good people. Thank you so much for making the trip.

Kyle and I both found it hard to let our friends go.  We have been very blessed to have such people in our lives.

Favorite Things #4

I found out about this neat item from a Red Cross donor recruiter who is a part of organizing blood drives in Bedford.  She was telling me about a lady in Shenandoah who makes charms for necklaces with you loved one's fingerprints on them.  I am so into things like that and had to ask for more information.  I am going to try and get a charm of both my kids fingerprints.  The site is: www.prairiecreations.com 

Go and check it out.  It would be a great gift.

Making New Friends and Favorite Things #3

One good thing that has come from all of this is that we have met so many good people and made some new friends.  I took the above picture a couple of weeks ago when Kaleb Synder and his mom, Kathy came to visit us.  Kaleb is now 11 and last January had a heart transplant. 

His story is amazing.  He was a normal healthy boy who sometime last fall got a virus which they later found out attacked his heart.  He became so sick he was brought here to Children's Hospital.  This was during the ice storm last winter and right before the holidays.  Kaleb got so sick that he had to be put on a "Berlin Heart" while he waited for his heart transplant.  He was on the Berlin Heart for 48 hours and received his new heart on Jan. 2.

He is now back home and doing great.  He is a linebacker for his football team.  This really excited Kyle because he loves football but has never been able to play because of his heart condition.  Kaleb and his mother were wonderful to drive so far to see us and were very helpful with all of the questions that I had.  You can read more about Kaleb here:

www.stltoday.com/stltoday/sports/stories.nsf/illini/story/ 

Favorite Things #3

You have probably read an earlier post where I talked about a puzzle Kyle and I had been working on.  1000 pieces and he fininshed it last night.  My next favorite thing is the puzzle board we have to put the puzzle together on.  It is slightly bigger that most big 20x27 puzzles.

It was drawers on each end so you can store pieces in once you have seperated them.  Good thing for us moms is that you can pick it up and move it when needed to get it out of the way and not disturb the puzzle.  Kyle and I both enjoyed working on it and have several other puzzles to work on.  We got this puzzle board at www.bitsandpieces.com  

They have some neat puzzles and right now you can get a free puzzle when you order one.

For a free 300 piece you would order #43672, 500 piece #43661 or 1000 piece #43657 .

It would be a great family gift.

Kyle and Dr. Canter

We had our weekly clinic appointment with Dr. Canter and the transplant team yesterday.  This is a picture of Dr. Canter, who is the head of the transplant team and Kyle.  They were very busy yesterday but I was able to get Dr. Canter to take a picture with Kyle.  Dr. Canter still hopes to get us home by Christmas but we will just have to wait and see how things go.  It is obvious that he is a very intelligent man and very passionate about his work.  The rest of the team is the same.  I am totally amazed by them.  One of the doctors at Washington University which is with Children's came to see us also about a research study they just got Ok'ed to do. It is a study about Heart Failure and its relationship to the tolerance of glucose.  Studies have shown there may be a link and if so that possibly using drugs that increase the body's response to insulin could improve heart function and lifespan for people with congestive heart failure.  This would be very helpful information in children as the frequency of congestive heart failure in children is expected to rise with the increased number of survivors of repaired congenital heart disease.  Kyle would have to do a couple of tests, a glucose tolerance test and PET scan of his heart.  At this time he doesn't want to participate and I told him it was his choice.  He is just so tired of all of the tests and needles.  Anyway, I found it all very interesting and neat to actually see that every day research is being done to help improve the health of all of our lives. 
I also wanted to show you this picture from the hospital cafeteria.  Not the best place to eat but lots of neat stuff to see.  I took this picture from the second floor looking down into the cafeteria.  This big balloon is really neat.  

Thanks for all of the continued prayers, cards and responses.  We love hearing from all of you.

GO SLU BILLIKENS!

Kyle and I had a great time at the SLU Billikens men's basketball game last night.  Dr. Kanter and the transplant team got us tickets that were great seats right down front!  This was the first Division I college game we had ever been to.  We had such a good time.  Even if you don't enjoy basketball it was such a great show.  Anytime the guys were not on the floor, even time outs, there was something going on.  This first picture is of Kyle and the Billiken mascot.  The mascot has Kyle's hat.
Here the Billiken was shooting out rolled up SLU t-shirts up into the crowd. (At least we think they were t-shirts).  They went almost to the ceiling and in the upper deck. 
                                                                  The SLU blimp.
  The team was awesome and Kyle has already picked out a couple of his favorite players.
The game went into over time and unfortunately SLU lost in the last 2 seconds.  It was still a great game.  Kyle wanted to see someone slam dunk it and got to see it twice.  Willie Reed did it twice.  I tried to get pictures of it but I'm still working on my photography skills.  Basketball is one of the hardest to photograph.  We did get another picture of Reed but it took forever to upload these so didn't get it on here.
The Pep band was wonderful.  They did some really neat things and sounded great.  These were the tuba players who came out on the floor.  
We were not sure what this building is, but we drove by it to get to the arena and had to get a picture it is so pretty.  The SLU arena is only 1 year old.  Before we left they gave us SLU t-shirts and Kyle a small SLU basketball.  They also invited us back.  We are hoping to go see another game but they go on the road soon.  Another interesting fact about SLU sports,

their women's volleyball team is doing great and have a semi-final game next week.

We had another appointment at the doctors today.  Will post some pictures and other info about it tomorrow.  Not a lot new.  Still waiting and Dr. Kanter states Kyle's name continues to pop up we are just down there on the list.

Make a Wish and Favorite Things #2

We got a call today from the Make a Wish Foundation.  The Bedford school nurse, Andrea Schuelke, had nominated Kyle .  They have received all of the information that they need from Kyle's doctor and will be arranging a time to meet with us.  He has been doing some thinking about what he will want for his wish.  He is very excited and it will give him something to look forward to after all of this is done!  Thank you so much Andrea for nominating Kyle.

Favorite Things #2

Today's favorite thing is related to a family enjoyed activity of gardening.  After I became an adult I loved to grow flowers and garden fresh tomatoes but living mostly in the city and having two small children I didn't have much time or space for it. 

After I met Kenton and we married,the kids and I became part of his wonderful family who has a long family history of a love for gardening.  I was hooked.  I don't have the beautiful gardens that his mother and sister have but I still enjoy it and all that they have taught me.  Kenton's sister's family own Rainbow Iris Farms in Bedford, Iowa.  You can find them here www.rainbowfarms.net.

Krystal and Kenny's son Kelly who is the farm manager, recently published his first book, 

The Iowa Gardener's Travel Guide ( I can't figure out how to underline the title).  Kelly spent the summer visiting gardens and nurseries around Iowa, and sharing about where he visited.   I am anxiously awaiting my copy.  It would be a great xmas gift for the gardener you know.  

Read more about it here:  www.iowagardenersbook.com.

Kelly's website is www.kellydnorris.com.

We are off to a St. Louis Billikens basketball game tonight.  Dr. Kanter and Kathleen, the transplant coordinator got us tickets.  Kyle is very excited and we will try to post a picture tomorrow. 

Favorite Things #1

I am finally back to blog.  I had a bad headache the past couple of days so didn't feel up to it.

Kyle enjoyed posting and  I will have him do it again when he wants to.  I am finally starting to feel better today so thought I would post.  

I have been trying to think of something interesting to post about while we wait here for Kyle's heart to come.  I decided, why not post about some of my favorite things.  It is a great time of year to do this with Christmas coming so I have decided to post some of our favorite things that we have been given or found recently.  Some would be great gift ideas.  And for added fun if you have any favorite things that would make great gift ideas please feel free to respond.  Even if you can't post a link we are all looking for great ideas this time of year.

Favorite things #1:  Clinging Cross

My Aunt Christine and Uncle Jerry recently sent it to Kyle and I.  A lady named Jane Davis designed it when her father was in the hospital dying in 2003.  She wanted something to hold on to to help her feel closer to GOD while sitting with her dad.  The wall cross she tried to use was just not comfortable in her hands so she later designed this one.  It is made of resin and fits perfectly in the palm of you hand.  It has been used by everyone, not just hospital patients or their families but service men, those in any crisis or anyone wanting a reminder GOD is with them.  The cross comes with a little pamphlet that shows you how to hold it.  I found it at www.notsoplainjane.com.  Sorry, I can't figure out how to post a link.  I think I saw it on Amazon.com also.  Thank you Christine and Jerry.  I have been using it already.

I hope you are seeing this Joshua, (our chaplain back at St. Francis).  Wouldn't they be great to have in our gift shop for patients or family to purchase?  By the way for those of you who don't know Joshua he is one of my favorite things, or persons!  He is just one of those comforting people who you just enjoy being around.  He is a lot of fun also.  I really miss him.

If you are ever at St. Francis with family or as a patient please look him up.  He is one of our hospital's gems.  He is such a great patient advocate.  All of us at St. Francis are lucky to have him.

 On a side note Kyle's defibrillator went off when we were getting in the van at the grocery store yesterday.  It was very scary for him but he handled it well.  We had to go to the hospital and down load the information so they could look at it.  Everything was fine though and Kathleen called and said there were no arrhythmia's noted.  Kyle decided last night that "Phil" just wanted us to know he was still here!

Thank you for your continued prayers, cards and comments!  I almost cried when I saw Janet's post.  I haven't seen her in so long.  Her family has always been so good to me growing up. 

Marilyn

 

Kyle Says Hello

Hi, everyone!  This is Kyle.  Nothing much has been happening here.  I just got done watching "Jeff Dunham's Christmas Special" on Comedy Central.  It was hilarious!  Also, the Broncos won today over the Falcons, 24-20.  The Chargers lost today also, 11-10 to the Steelers.  That gives the Broncos a comfortable two game lead ahead of the Chargers, and 1st in the AFC West (woo-hooo!!!).  In other news, we have about 60% of our 1,000 piece puzzle done.  It's hard not to work on it when it's right in front of you.  I've also been reading Dewey by Vicki Myron.  It's about a cat in Spencer, IA that got put into a library drop-box on the coldest night of winter, and they kept him in the library as a library cat.  So far it's pretty good.  Thanks for everyone sending me stuff- it's like Christmas every day.

More Pictures

These are pictures from Saturday when Jackie and Theo Ross and their son, Luke Lancaster and his girlfriend, Rachel, came for a visit.  Luke who plays for the NWMSU Bearcats brought Kyle some Bearcat stuff.  Kyle was very excited.  Luke brought a football signed by the team and Bearcat jersey.  The Bearcats are having a great year and we can't wait to see how far they can go.  

                                                                     Luke and Kyle

Today Kyle and I went to Liz Effinger's for a wonderful meal of fried chicken that she promised Kyle when he was in the hospital.  Kyle really likes Liz and we enjoyed our visit with her.  She also made him pumkin pie which he loves.  Thanks again Liz!  

Kyle and I continue to get cards and packages in the mail.  He looks forward to going over to the House and getting the mail each day.  Thanks to everyone who sends mail our way.  We love to here about things back home.

Parade of Hearts

Kenton and Jessica came out to spend the weekend with us.  They are both feeling better.  Kyle and I were so excited to see them.  We have missed them so much. Kyle tackled Kenton as he walked into the door of the building he was so happy.  

Back in Bedford today they had the Parade of Hearts walk at the Lake of Three Fires to make money for Kyle's Benefit.  We have talked to Kenton's family and despite the cold weather there was a great turnout.  Kenton brought our t-shirts out with him.  We all put them on today to pose for this picture.  We are sorry we couldn't be there in person but we were thinking of everyone and so thankful for all of you that participated.  We loved reading all the sponsors names on the t-shirts.  I know the weather must have been miserable but want everyone to know how much your participation meant to us.  I was told my dad walked the entire walk.

He is such a great person.  We can't wait to see pictures of all of you who were there.

We had visitors today also. Jackie and Theo Ross, their son Luke Lancaster and his girlfriend, Rachel came to visit us.  After I get Jackies' permission I will post some pictures.  Luke plays for Northwest Bearcats Football and brought Kyle a jersey, team picture and football signed by the team.  He also played a game of PlayStation 2 football with Kyle.  Kyle has been starving for some real competition as I am not that good.  Luke made Kyle's day!  Thank you Luke, Jackie, Theo and Rachel! 

We are going to enjoy the rest of the evening as a family before Kenton and Jessica return home tomorrow. 

Another Quiet Day

 Nothing much new to report.  We are still here waiting.  Kyle had a doctor's appointment today and no changes were made.  The beautiful weather here is coming to an end as it was windy today and we did have a little rain.  It is suppose to get colder the next few days.  

Jessica and Kenton have both had colds and Jess stayed home from school today.  She is sounding better tonight though.  Kyle and I really miss them both.  We have not seen Kenton for 2 weeks and it has been about 4 weeks since we have seen Jessica.  

  We continue to get cards and packages.  Kyle looks forward to going to get the mail each day.  I am feeling so bad though as I don't know how I can ever thank everyone enough for all you have done for us.  Please know I am ever so grateful.  We are so blessed to have so many wonderful people in our lives.  Thank you.

Preparing and Waiting

Nothing much new here.  Kyle has been working on homework daily, playing his play station football, watching football games and reading a new series of books he found that he likes. 

We talk to Jessica and Kenton every night.  Nightly Kyle tells me how much he misses Kenton and wants to be home helping him farm.

 I am trying to get myself motivated.  The weather has been beautiful, it would be great to be outside.  I would love to be home cleaning up my flower beds or going for a walk.

I have been doing lots of reading about heart transplants and realize this is really going to change our lives.  Kyle will be on a lot of medicine afterwards to prevent rejection.  He will have to undergo heart biopsies to check for rejection.  His immune system will be suppressed so we will have to worry about getting infections and viruses and will have to avoid large crowds immediately afterwards.  He will still be at risk for other heart complications.  I'm reading that he will probably have a period of cardiac rehab afterwards also.  I understand we will need to stay in St. Louis for a while afterwards and still have to make back here once we get home.  We will have to start a more healthier diet which will be hard but probably good for our whole family.  On top of that we need to try to let him have as normal of life as possible. Our family will have a lot of adjustments to make as we are already seeing.  We will do it though and I am anxious to see Kyle grow and thrive with his new heart.  

Thanks again for all of the comments, cards, donations and phone calls.  We think about you all back home and can't wait to get back there.

Our Weekend

Our weekend was quiet.  Still no phone call from the hospital.  We went to the Ronald McDonald House party on Friday night for a short time.  We talked with a mother and her son who live across the hall from us.  He got a bilateral lung transplant 2 weeks ago and he looks great.  Kyle and him both like football and video games so they had something to talk about.  

On Saturday we went to the Galleria Mall.  It is huge but most of the stores are a little fancy or expensive for us.  We did go to Build a Bear Workshop.  While Kyle was in ICU he got a gift card for Build a Bear from the hospital.  He felt he might be too old but had always wanted to go before so we went ahead and did it.  He picked out a panda and put him in a football uniform.  He named him "Marshall" after his favorite player on the Denver Broncos.  The mall was crowded with kids as "Barney" was there in person and little ones were getting their pictures taken with him.

Saturday night we went to mass at the Cathedral which is close by.  It is the biggest church I have every been in.  Kind of like the Abbey in Conception but on a larger and grander scale.

Part of the mass was sung in Latin.  Kyle didn't like how it echoed.  He says he likes our little church in Bedford better.  We miss everyone there and Father David also.  I hope to go back to the Cathedral during the week though and get some pictures.  It really is beautiful.

Tonight we had visitors.  Lori Stoll and her daughter, Genesse, from Conception came to visit.

Genesse is looking at a university out here.  Lori and I went to school together and used to hang out in high school.  She hasn't changed a bit.  Her sense of humor was a great "pick me up" for Kyle and I.  They brought us some cards and gifts from home.  Thank you so much to everyone.  They took us out to eat at AppleBee's.  Thanks Lori for coming by.  I almost felt like kids again, if we just had that chevette you used to own.  Kyle thought Genesse was "hot" and really got a kick out of Lori.

I cleaned today and did laundry hoping the phone call might come tonight or soon anyway.

The home health nurse who came last week told us most people she knew got the phone call at night. Anyway, we are trying to prepare ourselves and keeping the faith that all will go well.