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.