Thursday, October 28, 2010

John's Transplant Listing

Transplant. It’s a word we’ve been scared of all of John’s life. At first we were told that his dual diagnosis – short gut/prune belly – would mean that he would never be able to have a transplant, but time and research have changed that. On Wednesday John’s doctors in Omaha determined that they had done all that could be done medically and surgically to rehabilitate his intestines and that he needed to be listed for a liver/pancreas/small bowel transplant. We are waiting for Medicaid approval for this but the nurse expects that John will be actively on the transplant list by Monday or at least quite soon.

Knowing that John is listed for transplant comes with many emotions, mixed to be sure, relief that we are not at the end of what can be done to help preserve John’s life here with us. Sadness that these organs will come from a child who has died, and yet we know that if John dies we hope that his body will be able to help forward either the research to save another child’s life or the life of another child itself and that will bring us a sense of peace in his passing. Fear and worry knowing that survival of waitlist, surgery or recovery are not guaranteed. But we remind ourselves that life here is not guaranteed and take comfort in John’s Baptism, knowing that his life is already preserved eternally no matter how long or short it will be here with us. Concerns about how to handle both the waiting time and then the actual hospital time both of which are undetermined but there are guesses as to how long they will be. Hopeful because there are transplant success stories, this is certainly not a cure but more like a trade of one illness that will eventually kill John for another which he has a much greater chance of surviving for a longer time.

Life on the waiting list will be different than anything we have done before. Most of the children listed through Omaha receive organs before a year has passed from their listing date. Some children are removed from the list because they get better and no longer need a transplant, others are removed from the list because their health deteriorates so that they are no longer able to survive the transplant. Some children have received organs as soon as a few weeks from listing some wait longer than a year, there just is no knowing when the phone call will come that says it’s time to go for the transplant. While we wait there are some things that we agree to, keeping John as healthy as possible, notifying the transplant team of any illnesses or changes in his health, to always be ready to leave the moment the call comes without returning home if we are away from home or taking the time to pack if we are home, to remain in the area where we can reach Omaha within 4 to 6 hours and that one of us will remain with John in the hospital and when he is outpatient at all times, also that we promise to care for John and his organs after they are received and make sure that he has medication, makes appointments and such. The transplant team calls donated organs a national treasure, I like that term and further think of them as a precious gift of life both from God who created them and from the donor and their family who graciously share them.

Surgery itself takes from 5 to 7 hours, but of course anything can make it take longer or shorter. John will go from surgery to the PICU where he could stay for a month or more and then will be moved to an inpatient room in the hospital to recover further, which could also be a month or more. When he is ready to be released from the hospital he will be required to live in Omaha for at least 3 months before he is allowed to return home and may actually require another surgery and recovery time before returning home if they are able to reconnect his new small intestines to his old small intestines so that he will not have an ostomy.

Our minds are reeling with the what’s and how’s of this. There are things we will need help with and cannot do alone. First we would ask for your prayers for the family who will be mourning the loss of their child, for the doctor’s and nurses and other medical staff who will be performing the surgery and care, for John and lastly for us. We are confident that God’s will for John and for all of us is perfect but that doesn’t mean that there isn’t times when we are scared out of our minds, please don’t be afraid to ask questions and encourage us with God’s Word and His grace and mercy, we will need plenty of this, and we know that you are attached to John and can get scared and worried too, so we will also try to encourage you. As the days go by and we are able to process all of the what’s and how’s we will let you know what we will be needing and how you can help for the moment I can only think as far as needing someone to please come get Mellon and either keep her with them or take her to the vet in Marshall to stay until Mark is able to return home and that while Medicaid will pay for John’s hospital stay, surgery and such that it will not help in any way with Mark and /or I staying with him during the time he is hospitalized but will help with housing and some living expenses while he is outpatient. It is our honor and privilege to be John’s parents, we are blessed to have him in our lives and to share him and his contagious smiles and joy with you too as we embark on this new road in John’s life we continue to pray the one prayer that covers all and gives our minds enough peace to think of the next thing that we need to do, Lord have Mercy, Christ have Mercy, Lord have Mercy. In Christ’s love and mercy, Gina

Monday, October 25, 2010

The Sane Old Crazyness


Tonight when we got home from the hospital John had a great time chasing the dog with a Nerf sword, digging through my file cabinet and feeding the dog stuff that thankfully I no longer actually wanted, digging through his father's desk and dismantling things that he found in there, lining up trucks in his room, and then he started playing in the sink. Mark and I were talking and just peripherally watching this and then John got it just right and we had to come see. On a day that included trying to figure out what new signs to look for so that we could rush John to the hospital next time he needed to go, hopefully prior to needing an ambulance, visiting with beloved hospital staff, friends both in person and online and family over the phone about John needing to be listed for transplant, wondering how in the world I was going to break it to the poor cleaning lady at the hospital and the old guys at the front door of Sam's if John didn't survive all this, worrying about if John can have a transplant, and the family of the child he will receive organs from, getting lost in town driving places that I knew where I was going and just basically being a basket case it was/is amazingly pleasant and comforting for John to be his normal silly self and that the water fountain here reminded Mark of silly stuff he did at the same age added to the wonderfulness of being here, now with these people God gave me to love and care for. Thanks to everyone who has cared for us through this, each of you are a reminder of God's love to us, God bless you.


Saturday, October 23, 2010

Me First is NOT Selfish

If you've ever flown on an airplane you've listened or not, as the flight attendent explained that if the oxygen masks are needed that you should put on your own first before helping your child or others around you. As a mom that goes contrary to everything that I think about, and I'm not the only one. Often times I have heard moms I know and respect who are really amazing moms say things like they feel guilty because they went for a ride by themselves, bought something for themselves or got to take a shower every day. Seems like the better the mom is the less it takes for her to say these things and feel real genuine guilt for putting on her proverbial oxygen mask first. I was reminded again today by my own mom that to take care of John, I have to take care of me first, taking care of me first sounds so selfish to my mommy ears especially when John is sick, feeling bad or in the hospital. But my own mom's reminder was spot on and just when I needed it, to be able to care for John, to be able to sit through the ER for hours on end, be awake off and on through the night with little rest, learn what it takes to care for him and all that is involved with taking care of John I have to care of me first and am thankful today for all the people in my life who remind me that it's not selfish, it's part of taking care of my sweet boy! This message is for you too, Mark, and for all the moms I know, it doesn't matter if you kid has special needs or regular old ordinary needs the thing they need most is you and to do that you have to take care of you first.

Friday, October 15, 2010

Where Have All the Updates Gone

Um, well, we've been swamped. Mark's classes are going very well, we survived his first on-call and will get better at actually doing things while he is away. We had wonderful company, John's godparents and their children came and I actually have a few pictures but well, I'll get to those pretty soon. We had a wonderful visit and John had a great time playing with all the kids even though learning to share kinda stinks and his belly was hurting through much of the visit. New meds are started and we will see how that goes. I'm still struggling with how to keep track of school but we are now doing some school just about every day, but by the time I've read aloud to him from 7 or more different books each day I'm just out of words and so blog posts will come again, but it might have to wait until I get used to the reading regimen. It's being so worth it though because John has started to sign to me about what we are reading and in the middle of the night the other night he was signing to me about Stuart Little's spy glass. So if you've wondered where we've wandered off to, we're here, just swamped and in a mostly good way. John has appointments in St. Louis on the 21st where we are looking forward to getting to meet some old friends, and meet some friends we've only known online in person and then he is in Omaha on the 26th and getting to see our friends there is always worth the trip. I'm checking email and facebook a few times a day, and will post some new pictures and fun stuff as I am able. Meanwhile, know we're smiling or even out right giggling at the most amazing boy ever who is still running on mischief juice ;)

Learning Notes::Wk 3::2010

This week was horrible for John's belly, it hurt so bad that he actually threw up for the first time in a long long time. It did get better as the week went on, thanks to new medicine and a change in meds. School was pretty much on the back burner, somewhat because John just hurt so much, but also because he had the opportunity to play with friends, that doesn't happen nearly enough, and Mark had his first on-call this week, which is going to happen more frequently but we should also adjust to it after a while.

Learning Our Faith:
  • We continued to learn the catechism by heart with the 1st through 6th commandments.
  • We read aloud Abraham and the Angels and The Offering of Isaac from A Child's Garden of Bible Stories.
Language Arts:
  • We finished the third Magic Tree House book Mummies in the Morning, continued Stuart Little, Favorite Poems Old and New, Aesop's Fables, Ben Hur (Illustrated Children's Edition) and had a delightful time sharing Mercy Watson Thinks Like a Pig with our friends.
  • We continued reading Bach by Wheeler and Deucher and listening to Bach's music.

Friday, October 8, 2010

Learning Notes::Wk 2::2010

Learning Our Faith:
  • Actually started morning devotions again this week. We use Morning Prayer from the Lutheran Service Book and read through the Bible readings for next Sunday and sing one verse of whichever hymn I can manage to carry the tune on by myself. The Word is always efficacious but I sometimes wonder how much John gets from these things and this week was treated to several times when he signed to us about what was being read. We are still working on signing The Lord's Prayers, but it will come.
  • We continued to learn the catechism by heart. The 6th is finally starting to stick, if he can't get 'commit' right he is sure to get 'adultery' right each time, somehow that figures.
  • We read aloud The Promised Savior, The Children of Adam and Eve, The Flood, and Abraham's Faith in God from A Child's Garden of Bible Stories.
Learning to Read
  • Phonics from Ordinary Parents Guide to Teaching Reading we added M, N, and P.
  • Phonemic Awareness - we are reading Rhyming books and while working on the poem Twinkle Twinkle Little Star we are emphasizing the rhyming words.
  • Dolch List - John is working on the green list and was able to actually read 11 words this week.
  • Teaching Reading with Children's Books - we have been rereading Here Comes the Cat and John has been working on spelling out 'here', 'comes' and 'cat' with his magnetic letters. This week John was delighted to read Hug to me all by himself, this is the second book that he can read all the words (hug, mommy, Bobo) to without help and in contexts other than just the book. The first was Tall, also by Jez Asborough, and it has tall, small and fall, along with mommy and Bobo. Learning that words that are capitalized have to be fingerspelled is nearly as big of a deal as learning a new word, but he is handling it well.
Language Arts:
  • We did the lessons 3 & 4 in First Language Lessons and John did great with all the new signs and the concepts, well there is plenty of time to work on them. This continued work on the new poem The Caterpillar and also specification of common and proper nouns. Again the hardest part of this was remembering the signs for 'common' and 'proper', this is going to take time for the mommy brain but I might finally understand it learning it at John's pace.
  • John continues to enjoy doing a page in his Handwriting Without Tears workbook and also likes to trace a few words on lined paper. He is especially proud of these pages and loves to get them to show dad the moment he comes in the house.
  • Poetry Memorization, we continue with Twinkle Twinkle Little Star, BINGO, and have enjoyed adding The Caterpillar from John's grammar book.
  • Reading Aloud Literature: Magic Tree House book Mummies in the Morning, continued Stuart Little, and continued reading poems from Favorite Poems Old and New along with other books that John enjoys picking from his shelves. We also started Aesop's Fables this week with the intention of reading 1 or 2 a day until we finish the book. We also started reading the Illustrated Children's Edition of Ben Hur. I actually tried to talk John out of this book once, but nothing doing, he was intent on us reading it to him.
  • We are still working on counting and this week worked especially on 1 through 5 with a new game, a Toy Story 3 version of Yahtzee Jr., John loves it and it's one the adults like too.
  • This week we continued reading Bach by Wheeler and Deucher and listening to Bach's music.
  • In addition to trying the art test again, we played with thumbprint people together one day and John played with them off and on through the rest of the week.
Therapy At Home
  • John worked on cutting some things with his scissors, things he was allowed to cut, and he continued to work on his walking. He also likes to play on his little trampoline and see how much stuff he can reach.

Monday, October 4, 2010

Little Conductor


John props music on the stand, turns on the automatic settings for the keyboard and conducts, it's fun to watch, even if not always fun to listen too.

Saturday, October 2, 2010



Each morning when John gets in his chair he heads out to find his handwriting page on the table. He enjoys doing it and is so very proud to show it to dad when he gets home. Today I found some coaching for right handers trying to teach lefties how to right without hooking their wrist so next week I will work more closely with him, but still his diligence is admirable.

Friday, October 1, 2010

Apple Trees

I've heard the saying 'the apple doesn't fall far from the tree' all my life. As a parent I am beginning to really understand the weight of that statement.

I want to start this by thanking both Mark's and my apple trees, each of them moved a good deal from the weaknesses and frailties of their own trees. No parent is without sin, no parent is without mistake or failure, it is the duty of the children to move away from the mistakes of the parents, ours did marvelously, and left us with both less room to move and much more shelter under their branches.

There is another quote about apple trees that I just love, I've heard a few variations on it, this one is the one I came across tonight "Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree." Martin Luther. As I think about my role as a parent I think more and more about this quote and that this is my job, indeed a better word for it is my vocation, but sadly that word is less understood these days.

Around me the world seems to be falling apart, politics are horrid, freedoms are being wasted, false security is being sought after, people seem more interested in self than others and all manner of things worldly seem to be spiraling downhill, just as they have since the fall of man. No matter what it is my job to plant this apple tree, to make sure that as a parent I am giving my child the best that I can. I don't mean money, surely there is a place for that, but in the end a child is better off to have been truly loved in poverty than ignored or worshiped in riches. As a parent intent on homeschooling my son, it is easy to be caught up in the worries of academics, will I provide enough that he can have a chance at a good college, job, etc., am I doing it the right way, could I be doing it better.

Sometimes I find that it is so easy to be wrapped up in those things that I forget the one thing that my son truly needs each and every day, the one thing that only his dad and I can give him and that is a real living picture of what it means to love and to be loved. This extends to every part of life, because John is homeschooled he sees us all the time, through each and every thing. He has watched us through joy and sorrow, he has seen us be scared to death that we were losing him and thrilled to pieces that he was doing well, he has seen us excited because we found out I was pregnant and mourning the loss of yet another baby we will not hold here, he has seen us struggle financially and rejoice over an unexpected gift, he has seen our life inside and out, good and bad, with nothing but the most intimate things hidden from him.

As I think through the things that I want our beloved son to learn, I remember my dad saying (as all dad's have I'm sure) 'do what I say and not what I do' and I can remember doing (in this case driving) exactly as I had seen him do (to the best of my teenage abilities) and not like he had told me too. From this I know that no matter what I tell John it is my actions that are his greatest teachers, and so when I am tempted to give into sorrow, to lash out in anger, to give up on projects that become difficult, to shirk my duties to go have fun first, or to never have fun because I feel like I always have more work to do, that it is what he watches me do that will teach him the things that will make or break life. For a child can always learn a little more math, science or English, but at some point they seemed closed off to lessons about mercy, patience, kindness, compassion, persistence, respect of self and others, honesty, love and faithfulness. As John grows and we progress through school hopefully he will reach his full potential in all the realms of academia, he is one smart little boy, but if he grows into a man who has all those important qualities, mercy, patience, kindness, compassion, persistence, respect of self and others, honesty, love and faithfulness then Mark and I will have done our job, fulfilled our vocations as parents. Certainly not through our own strength because we too are sinful broken human beings, but through Christ who is in us and Who through us plants that apple tree fresh and new each morning.