Another Busy Week

We have had another busy week and weekend. Yesterday Kyle went to his first FFA Contest in Corning. He looked so grown up all dressed up and wearing his FFA jacket. I wanted to get a picture but we were running late and Kenton had to take us into town to meet the bus being as we had snow again Friday. We left the van in town Friday night because we were not sure we could get it home. Anyway, Kyle did very well at contest and scored 3rd out of 26 in the competition he was in. He will now go on the the district competition here in a couple of weeks.
After getting the van back home, Jessica and I took off for Des Moines to go Prom dress shopping. It is quite a struggle for her being so tall. We went to Stacey's in Urbandale and found it to be quite an experience. It is a large building and they advertise to have over 5000 prom dresses. We had to take off our shoes before going back to the large room where all of the dresses are. They assign you a dressing room and a helper and you then start going through all of the dresses. They are grouped on large racks with the sizes at the end. The place was packed and I don't think I have ever seen so many girls shopping for prom dresses. After about an hour and a half and thanks to our helper, Alana, Jessica found the perfect dress. It was just what she had been looking for and good for Grandma Johnson it fit perfectly. It won't need any altering and it is actually long enough. It is strapless, turquoise in color with silver bead work on it. It is very full and poofy on bottom. She looks gorgeous in it. I had to be the one to take the heavy dresses off the hanger, help her get in and out of them and then put them back on the hangers.

By the end I was exhausted, and have a new respect for sales consultants who do that on a regular basis.

On the way,we stopped at the fabric store in Creston, Quilts and Other Notions, to get some more fabric for decorating the baby's room. I had gone with Kenton's mom a few weeks ago and we found some that I fell in love with. I am not really any good at sewing but love fabrics and all of the beautiful colors. I decided to go with a rust color and green. We are going to work some farm animals into the decor as well, after all he will be a little farm boy.

I am so lucky that Kenton's mom is such a great seamstress. She is making bedding and sheets for the crib out of these materials. Can't wait to show the finished project. Baby Johnson doesn't officially have a room yet but we are working on that and probably will still be working on it after he is born.

We are home the rest of the weekend and getting ready for another busy week. It is snowing outside again and we are suppose to expect another 5 inches today. I hope Spring comes soon!

A Favorite Book and How Important Our Friends Are

The kids and I all share a love for reading. It is not uncommon to find all three of us with our noses in a book on these cold winter nights. Kenton, not so much. He reads the occasional farm magazine but does not share that love for reading that the rest of us do. I recently read this book by Kelly Corrigan called The Middle Place. It was a wonderful read. It discusses the author's struggle with breast cancer, and finding herself in that "Middle Place" where many of us are at. We are parents trying to care for our children, yet still someone's child needing our parents. I have to admit I am still a Daddy's girl so I could totally understand where the author was coming from. The book also includes this exert that Kelly reads on this You Tube video:

(I will warn you it can make you cry as it talks about our friendships and connections with other women.) http://www.youtube.com/watch?v=u_4qwVLqt9Q

I did a mini scrapbook a while back on the importance of the women, (friends and family), in my life. It was based on the album and products we received in a Rusty Pickle class I took a few years back at a Creating Keepsakes Convention. It is still one of my favorites.

We have had another busy weekend at our house. Yesterday was my birthday, the kids and I spent the day shopping for some clothes they needed for upcoming events. Kenton was busy working outside. Today he is stiff and sore. I think he aggravated a back problem he already had. I got to spend a little time scrapbooking, Kyle spent the afternoon ice fishing again, and Jessica continues to work on her individual speech material for contest. We are headed out for a 4 -H meeting now.

Update

I know it has been about a month since I last updated our blog but times are really busy. January was a a busy month for us. I participated in the health fair that the hospital sponsored in Maryville. Brenda Neff, Joshua Allee and I had a table with information about organ donation.
Since Kyle's transplant I have wanted to get involved with promoting organ donation awareness.
There was a good turnout and we were asked some common questions that we were glad to get the answers out there. Brenda and I have become friends not only through the common bond of organ donation, (her family lost their little girl, Abrielle, in a tragic car accident and they donated her organs) but also through our shared hobby of scrapbooking. Joshua and I work together at St. Francis as he is our hospital chaplain as well as a long time adopted part of our family.

I am now 23 weeks pregnant with Baby Boy Johnson and we are trying to get our home ready for the new little guy as well as pick him out a name. It has been quite a family involved deal and lots of fun to see what names the kids have come up with. We are still undecided. I am feeling good, just very tired. Probably another reason I haven't blogged much lately.

Kyle is doing wonderfully! He had his yearly cardiac catheter in the first part of January. The results were amazing. This time they checked his coronary arteries due to the fact that transplant patient have a tendency to develop coronary artery disease. Kyle's looked great and the doctor even told us, "actually, it looks like a heart of an athlete!" I almost cried. I never dreamed I would ever hear that said about my son's heart! What a miracle! We continue to monitor his anti-rejection medication levels. The doctors in St. Louis want him a little on the high end as he is so at risk for rejection, esp. with the rejection he had early on.

Also in the early part of January we received an amazing and emotional letter from Kyle's donor's family. I hope to post about it soon. It was a beautiful letter and her story is remarkable. I can't wait to tell you all about her.

Kyle has been busy watching football, basketball and ice fishing with Kenton. Sunday Kenton's brother-in-law, Kenny, brought up his ice fishing hut and they fished on our pond. I walked down to check it out but was having camera trouble so this is the only picture I got. If you like fresh fish, the ones caught this time of year are so much better than in the summer. They taste so much better, because of the cleaner water I guess. They do not taste so "fishy".

Kenton has been busy pushing and blading snow-what a crazy winter this has been! We are all craving green grass and sunshine. Spring can not get here soon enough. We started having baby calves this week. The first one was born on Superbowl Sunday and yet another one today. Caring for them in this weather keeps Kenton busy also.

Jessica has been busy with school and speech contests. She just got finished participating in large group speech contest at State. She was part of Musical Theater and Improv. Both of her teams made it to the state level where the competition was tough. They scored well there also.
We were not allowed to take video or pictures, I so wished I could have. She is amazingly talented with her singing and acting! Her solo part in Musical Theater included part of the song,
I dreamed a dream, the song that Susan Boyle sings. It brought tears to my eyes. She is working hard now getting ready for individual speech contest. She is considering a major of music in college. I guess I should have known that even when she was little and she and her Gramps would ride around in the truck checking cows both trying to out sing the other!

Sorry for such a long time between post and such a long one this time. I hope to post on a more regular bases again.

New Word for a New Year

When I was younger I always loved to make New Years Resolutions. Most never panned out and after a month or so they were forgotten. Last year I took the advice of Ali Edwards, whose blog I follow to pick one word to focus on for the new year. Last year we were just getting home from Kyle's heart transplant. After all we had been through I wanted to just get out lives back to as normal as possible, especially for Kyle. I have a friend who had been in Vietnam and I asked him once what made the difference for him when he got back to the states. I knew he had been through so much like so many others but he seemed to not have had the problems like PTSD that affected so many others. Although I would never compare the stressful time we and Kyle went through with what happened in Vietnam I did use remember what my friend told me. He felt he did so well because he immediately threw himself back in society, back into life. He got a job immediately, got involved with family and friends and tried to get his life back to normal as soon as he could. That was my goal last year and the word I chose then was "live". I wanted to help Kyle and our family "live" again. I knew life was different and we had new things to do, watch for, etc, but I did not want us to be afraid, or dwell on the past, especially Kyle. I think we succeeded in "living" again. Kyle seems happy and adjusted. He has chores just like other kids that he is expected to do. We try to treat him as normal as possible. I still worry about him, and about his future, but I try not to dwell on the fact that he is a transplant patient. We are doing what we have to do to keep him healthy, otherwise life goes on and is as normal as it can be.

So here I am starting off 2010 ready to pick a new word for this new year. I decided to borrow Ali's word from last year, "Nurture".
nur ture
verb [trans.]
-to care for and encourage the growth or development of
-cherish (a hope, belief, or ambition)
noun
-the process of caring for and encouraging the growth or development of someone or something

It seems fitting as we will add a new baby to our family this year. I want to focus on nurturing so many things this year, not only the new baby, but my two other children, my husband and myself too. There are relationships with new friends and old that I want to spend time nurturing. I want to nurture the relationships I have with my parents and other family. With the new baby coming our lives will change this year. I am nervous and scared yet excited and looking forward to it all.

I encourage you to pick a word for this year to focus on. It actually worked so much better for me than specific goals. It easily reminded me last year where my focus was. You can read more about Ali's word and other links here: http://aliedwards.typepad.com/_a_/2009/12/one-little-word-2010.html
What will your word for 2010 be?

Christmas Wrap Up and a New Year

It is hard to believe Christmas came and went so quickly but it did. I felt like I didn't get a lot of good pictures this year. I guess I blame it on being pregnant and tired! Ha! The kids were happy with their presents but I didn't think they would want me to post pictures of them in their pajamas and bed heads so I won't. When I asked them Jessica's favorite gift was her new guitar and Kyle's was his new Ipod. I did get a picture of our tree before we took it down. I love Christmas ornaments so we have quite a collection. We didn't even put them all on the tree this year because their are so many. Each year I get the kids a new ornament, usually one they have picked out from the Hallmark collection. But this year we opted for a photo ornament from pottery barn with a picture of our dog, Ralph, who passed away this fall.


In other news I am almost 18 weeks pregnant now. I had to finally break down and start wearing maternity clothes. Last Tuesday Kenton and I went to St. Luke's for our prenatal visit. It took most of the afternoon but was quite interesting. We learned a lot from the genetic counseling, then they did a level 2 ultrasound and finally an amniocentesis. Only preliminary reports back so far but everything looks great. We are expecting a healthy baby BOY! Here is one of Baby Boy Johnson's official ultrasound pictures.

We will return to St. Luke's next month for a fetal echocardiogram due to the congenital defect that Kyle was born with. They are not expecting anything to be wrong but want to check his heart because of family history.

We were so blessed in 2009 and are now excited that the new year is underway. We are looking forward to a great 2010. We hope you all have a blessed new year also.

One Year

Yes, as of yesterday, December 4th,it has been a year since Kyle received his new heart. I asked him if he felt like it had been a year and he said,"more like ten." A good sign I thought. So much has happened in this past year and he is doing so well. He is headed out for the Northwest Football game tonight with a friend. He started going to their games this year and really enjoys it. He spent the afternoon repairing one of our bird feeders and getting them all filled in preparation for the upcoming storm this week. He is turning into such a great and helpful young man. He will continue to have to go back to CMH in KC for check-ups.

We have other news to tell also. Many of you already know that our lives have again received another blessing. We are expecting a baby due in June. God has blessed us so much this year and I am so thankful. We surprised many with our news but everyone has been so excited and happy for us. Just goes to show you never know what great things God has in store for you!

Donor Letter

I took off some time yesterday to spend alone and write the letter to the Kyle's heart donor family. After a year the letter can be sent to them. I purposely waited until now to write this letter. I wanted to give myself time for the emotions to settle and to give them a full year view of how much better Kyle is now. The letter we be sent out on Monday and then forwarded to them after the one year mark. I thought I would share it here:



Dear Donor Family,

I am sure this letter may be difficult to read. It is difficult for me to write. It is both painful and joyous. I know I may only have one chance to write to you and it is important to me to get it right. The reason I am writing is to thank you.

Kyle is our 14 year old son. Almost a year ago your donation saved his life. Kyle was born with a congenital heart defect. He had his first surgery at 4 weeks of age and had a heart valve replacement at 11 months. This was a temporary fix that would buy him time until he would again need another open heart surgery as a teenager. Last fall at the age of 13 we knew we were getting closer to having that surgery as he became more ill. To the surprise of the doctors his heart condition was much worse than they had imagined and open heart surgery would not be enough to save him. We were sent 400miles away to another Children’s Hospital and after being evaluated we were told that Kyle’s only option was a heart transplant. He and I were required to stay in that area until a new heart would become available. His condition deteriorated quickly. His heart was failing. He no longer had energy to do much. Walking a few blocks made him extremely short of breath. His appetite decreased and he slept more than usual. I watched helplessly as his health failed. On several occasions he and I had very in depth talks about life. A couple times he asked me if he was going to die. I did not know how to answer him but did the best I could. Since October 8, 2008 when Kyle was placed on the transplant list our family experienced many feelings. I was very torn. I prayed for Kyle to get better but did not want another family to suffer. I only asked God that if it happened, that the family would be brave enough to donate and Kyle would be a match. Kyle received his heart December 4, 2008. I cried that day. I cried for joy for my son but also because I knew that on that day some where a family lost a precious beloved person in their lives.

After the transplant Kyle had some complications early on with rejection. He also had some trouble with a rapid and irregular heart beat which required an ablation in February. Since then though he has been doing wonderful. In less than a year he has grown about 2 inched and gained about 33 lbs. He has more energy and can run now like never before. He has got the OK to play high school basketball which will start here next week.

During this past year we look back and reflect. There were so many fears and uncertainties we all felt. We watched our son’s health deteriorate, watched him suffer and then watched him rejoice and now flourish as health and new life have came back to him. He is a wonderful boy who has a great sense of humor and loves to laugh. He loves sports, especially football and basketball. He loves the outdoors, farming, fishing and animals. My husband and I tried so hard to prepare him and our family for all of this as it unfolded. In the end we realize that Kyle taught us so much more than we ever taught him. He taught us about bravery, faith, not dwelling on the bad and living each day to the fullest. He has astounded us with his attitude and we are so proud of him. Our family is forever changed thanks to your donation of life. Your courage in the face of loss has given Kyle a chance at a new life.

Your loved one has become our hero and angel. Her gift of life has touched and inspired so many. I pray for your family daily. There are many more thoughts and feelings I would love to share with you. We would love to meet you someday if you like and hear more about your loved one. Even if we never meet please know we will honor her and her gift of life by taking good care of our son and celebrating life.

With love,
Marilyn, Kenton, Jessica and Kyle