Saturday, April 30, 2011

The Smirk of a Dog

John had a great time this morning hanging outside with Mark, as Mark was getting a pork butt started in the smoker and various other outdoorish things. John followed his dad around for a while and then decided it was more fun to go play with things in the back yard.

Shortly after this he was trying to 'shovel' something, we have no snow and no piles of manure and somehow the grass wasn't as easy to 'shovel' as he thought it should be so he came back for a second toy, um tool.

As he was trying to use this one I do believe Mellon was smirking at him, heck she might have been straight up laughing, but that didn't last for long. You can see that he wasn't quite as effective as one would hope with this tool either, so he gave that effort up and decided to lead Mellon around the yard with her chain, by the time he was done with this Mark had to flip his chair over on it's side to get the dog chain out of the drive wheel of the chair. I'm pretty sure the dog would have been smirking then too if she wasn't so relieved to be removed from the grasp of the boy.

It's been a record setting day around here, the sprayer on the kitchen sink broke, John was standing up in his chair and then laying on the floor face first as he tried to go backwards fast while standing, the shelf above my desk proved that it needed to have a few more braces and so had to be emptied, John was enthusiastically driving through the kitchen, doing what looked like a soccer kick and broke the kitchen cabinet door and to finish off the night the only light in the garage where the pork butt is smelling yummier by the hour blew out. Still we end this day with smiles all around, John is transitioning onto new formula without a hitch, he is bigger and has more energy by the day and tonight it was really nice to be able to load the materials for tomorrows Sunday school lesson into the bag that we got from the hospital in Omaha to keep John's discharge papers - many days I sat looking at that bag, it reads, wondering if we had just transplanted John's death, and now I am taking the gospel to church in it to share with John and his little Sunday School friends.

Friday, April 29, 2011

Parent Network of Mid Missouri

In visiting with the power soccer guy we found out about the Services for Independent Living in Columbia starting a parenting support group and I was invited to attend their meetings and be part of the group setting this up. The first meeting was yesterday and because of scheduling conflicts John came with me and sat through a 2 hour meeting, I was amazed and impressed with how well he behaved, having to adjust the volume on his DS and iPod only a few times and he reserved all honking and table slapping until the last few minutes, phew, by that time it was time to escape anyway.

The group itself is still in the works but they/we are trying to build something to help parents of disabled children (no matter the children's age) and others who love and care for disabled children help them be as independent as they can be. It's also going to be a support group for the parents because raising a disabled child is amazing and wonderful and a blessing beyond measure, but it also has a tendency to isolate and separate one from the rest of the world, especially if they don't have amazing friends that share other parts of their common life, faith, homeschooling or such. We are very blessed with relationships that support us and keep us going and we are looking forward to being able to share and help and support other parents who aren't so blessed with such wonderful friends and family.

Eventually there will be more information about Parent Network, facebook pages, websites, and the like, for today if you are interested contact me and I'll help you get connected.

Tuesday, April 26, 2011

Power Soccer

Today John had his cytogam infusion, all went well despite having to be poked 3 times for an IV. He weighed 52 pounds today, that's just huge! After his infusion we went to meet the man in charge of power soccer. We had a nice visit and we are looking forward to May 21st when there is a big exhibition and he will get to play some and see if he wants to do this - I can't imagine that he wouldn't.

Monday, April 25, 2011

Cub Scouts

Tonight Mark took John to his first ever Cub Scout meeting. John had a great time, as did Mark, and we are looking forward to helping John learn and grow and enjoy Scouts - we're also quite thankful that we have all summer to learn to put the pledges and such into sign, phew!

Thursday, April 21, 2011

Tucked In Shirt

Ok, ok, I know everyone else is posting Maundy Thursday posts, at this point I'm assuming you've been to church and/or read a bunch of their posts, if you haven't you should.

What I'm here to tell you is just amusing. Since John's transplant his body has changed shape enough that it is now feasible and even desirable to teach him to tuck in his shirt, well ok, I tucked his shirt in tonight, but my point is it looks really cute, only thing I hadn't thought of is what you can do when your shirt is tucked in, at least I hadn't thought about it until I looked down at my sweet little boy leaning against the pew in a really cool slouch with both hands shoved in his pockets. These moments of normal just make me smile, and say Lord have Mercy, thank you.

Wednesday, April 20, 2011

The Yellow Boat Quilt

Photo on 2011-04-20 at 11.26

The talents and artwork of 30 Children's Hospital patients (John has 2 pictures in the blue section) will be displayed permanently at Children's Hospital beginning May 12 (yes, we plan to be there). Dawn Sees, a graduate student in the University of Missouri's College of Education, shared the story of "The Yellow Boat" with patients at Children's Hospital. After hearing the story, they created small quilt squares expressing what made them happy, and Sees sewed the squares into a quilt. The four-foot-by-six0foot quilt was first displayed during the PACE Youth Theatre's Arts in Health theater production of "The Yellow Boat" in January. the play was written by David Saar as a way to celebrate his son's life. Born with congenital hemophilia, Benjamin Saar contracted HIV through a blood transfusion. He lost his battle with AIDS at the age of 8. A gifted artist, Benjamin channeled his physical and emotional pain into colorful and imaginative drawings. The Yellow Boat Quilt at Children's Hospital will serve as an example of how powerful art can be in the healing and recovery of patients. It will be dedicated to the patients, families, staff and volunteers at Children's Hospital.

This artist came to John's room when he was in Children's with his bowel bleeding and in pain prior to his transplant last fall. She was a delight to work with and brightened both John's and my day considerably with the whole process of the art itself and getting to enjoy hearing about the project and what her plans were with it. While we think it cool that John has two squares in here, we are mostly excited that he got to enjoy that day and take part in something that will bring smiles to others for years to come. God has blessed us in many many ways, and on that day, he blessed us to meet an artist who wanted to use her God-given talents to help others.

Tuesday, April 19, 2011

Food Therapy?

"How good one feels when one is full -- how satisfied with ourselves and with the world! People who have tried it, tell me that a clear conscience makes you very happy and contented; but a full stomach does the business quite as well, and is cheaper, and more easily obtained. One feels so forgiving and generous after a substantial and well-digested meal -- so noble-minded, so kindly-hearted." This is from Three Men in a Boat and it was too funny not to share :)

Monday, April 18, 2011

Faith and Medicine

We took a long weekend to go to Nebraska and enjoy getting to see our friends oldest daughter confess her faith. It was so great to be in the midst of our friends and their family as we celebrated with Adri, and at the same time we were thinking of Isaac and being so happy and proud of him for confessing his faith in confirmation this Sunday too. Now each time we celebrate the Lord's Supper the table is increased by two and we will confess our faith with these two young people who are dear to us.

While in Nebraska we were also there for John's clinic appointment. It was amazing! John has gained over a kilogram, 2.2 pounds, since his last appointment like 5 weeks ago. He is doing so well that he does not have to return for another clinic appointment for 3 months, the longest he has ever been between clinic appointments in his entire life. He also gets to have labs drawn every other week instead of every week and 2 of his anti-rejection drugs are being lowered. Amazing news, just amazing. He made this whole trip with no problems whatsoever, had a wonderful time and of course I took the camera with me and completely forgot that I did and never took it out of the truck. Friends will post pics on Facebook eventually and I will link to them there.

Thursday, April 14, 2011

A Boy and His Dog

This is of course the same dog that came right up and snurffled him immediately when we met her, and the same one who if he reaches out and grabs her collar he can drag around the house, the same one who gets locked in her box by a squealing happy boy and the same one who is eager to see same silly boy when he gets home from wherever he has gone. I cannot imagine a house without a dog, this one is particularly good, if yet still young and a little on the too eager side. We still hope to see her be John's helper in future, and the other day when I was helping him walk from bathroom to bedroom he reached out and grabbed her collar, walking with one hand holding onto Mellon and one hand holding on to me and we cheered!

Wednesday, April 13, 2011

We Were Robbed...

...or at least I was! Before you panic this has NOTHING to do with John, our house, cars or anything else but with my education and specifically my education in English literature, sigh, just robbed.

Thanks to Woman of the House and her weekly reading challenges, I have been finding more and more books to read. The latest is Three Men in a Boat by Jerome K. Jerome. It is hilarious. It is so funny that I end up reading passages of it to Mark because he comes to find out what I'm rolling around laughing about, at times enough I can't breathe. The book was originally published in 1889 and while I'm not exactly sure that a publishing date makes something classic, it certainly makes it old and the definition of classic seems to be a moving target anyhow.

So you are wondering about the robbing, well if we had read this in High School English class instead of some other books my love for classic literature could have been fostered at a much younger age. This is certainly not dry, nor boring, nor is it a long treatise on depressing subjects that left me wondering why all the characters of the book didn't just leap from the nearest ledge. In a world of homeschool mommies who tout classic books here and there I often feel like the lone hold out. I certainly see the value in some classics, Lord of the Flies should be required reading for everyone who deals with children, most especially boys, and even more especially other people's boys. To Kill a Mockingbird certainly shouldn't be missed, and I even have fond memories of Old Man in the Sea. But books, which others admittedly love, like Silas Marner and Ethan Frome, made me positive that while I should read the classics I had little desire to actually do so.

This book Three Men in a Boat actually gives me hope for delving into more classics over time. I have always thought I should, but now I find more 'want to' and in the end 'want to' gets me a lot farther than 'should' ever did. I do not believe that my English teacher did something wrong, personally, I am positive that she chose books that she herself loved and that moved her, but it does make me realize the limitations of 35 kids in one literature class and thankful that when it comes time to get John motivated to read the classics that I will get to tailor our reading to his sense of humor and taste and eventually broaden his education by choosing things that fit him and lead him in, instead of ones that fit me or a set curriculum.

Tuesday, April 12, 2011

Around and Around We Go


Yesterday was errand day. One of them was a venture into the mall so that I could retrieve my latest idea on recipe storage from Barnes and Noble and while there John got to have his first, and second, carousel rides. He loved it, absolutely loved it and I am positive that we will be making stops at the mall on every errand day that we can figure time to into, and we will plan ahead :)

It is funny how life goes around, well maybe not funny. Yesterday was so good, John had energy and was funny and felt good and laughed and carried on even late on the way home when he was tired from a full day with no nap. A good day, yet when I was putting him to bed I was watching liquid and bubbles just pour out of his ostomy. Increased output is the first sign of rejection, I was paralyzed by this, just watching, finally I was able to break and read John his books, say prayers and empty the bag - the output for the day was really not up anymore than it ever is on Monday and Tuesday when he takes one of his antibiotics. Today things are just fine. Last night I could see the stuff pouring out of his ostomy as real as I could see Stargate on TV or anything in the house, like I could see the ostomy played like a film over the other things I was looking at. As I was falling asleep I kept repeating the Kyrie to myself. When John woke at 2am to go potty and then couldn't go back to sleep neither could I. Finally at 5:30a I went back in there for the umpteenth time, John signed 'drink' and I reached over to unplug his formula pump and he smiled, signed 'daddy' and grabbed his monkey. I picked up him and his stuff and took him in to Mark and laid him in Mark's arm and John was sound asleep within minutes and slept for hours. I told Mark that I think he is our security blanket, John and I both slept next to him and slept, where we couldn't find a way to fall asleep before.

I find myself thinking about life and how great it is with John doing so well and then just around the bend I am scared to death and then comforted by God's gift of a wonderful husband. Lord I believe, help though my unbelief, and thanks for the big guy in the other room, he's the greatest.

Monday, April 11, 2011

Traveling Light

Today we are trying to get ready to head into town to run some errands. Mark and I were thinking the other day about a comment made at the hospital, something to the effect of how much stuff we had to carry when we traveled. It really felt that way for years and even more so right after John was out of the hospital - somehow anti-rejection meds carry a mental weight far beyond the size of their bottles. At any rate John has been doing so well lately that this weight seems to be lifting, not the importance of meds by any means, just the perception of the enormity of the situation. The other thing that is really helping is John is growing, growing, growing. He's needed new shoes, new pants, new shirts, new underwear, and one less thing ...

...yep, that's right, good bye potty seat!

There are still a few commercial toilets that are a bit intimidating in size, but the potty seat is gone, and we don't have to travel with extra clothes, or formula pumps (he's only hooked up at night) or meds (because we come home for bedtime and he only gets meds in the morning before we leave and at night before bed.) It's sometimes strange, but it's really cool to be traveling this light.

Saturday, April 2, 2011

Life by the Numbers

Today I looked through the 244 pages of the detailed bill from John's transplant and subsequent hospitalization. It totals $1, 551, 885.13, but that's not the part that I was looking for. The PICU time is mostly blood for me, bag after bag of blood or blood products hanging, I have never seen so much blood and I was wondering if I was remembering it as more than it actually was. So I counted and there were

61 units of Packed Red Blood Cells
56 unites of Plasma
30 units of Platelets, and
44 units of Cryoprecipitate, a blood product that is used in hope of setting up clotting and fast.

More days than not I would go through the First Commandment, reminding myself that I was only to fear God, trying to set aside fears that John wouldn't survive, that the medical team would give up or run out of blood. Day after day I continued to pray that God would provide both John's and our Daily Bread, and often times that bread came in the form of another bag of blood.

There is no price in $$ that a life is not worth, there is no price in tears, fears, worries or care that a life is not worth. I will be putting this detailed bill away with all the cards and letters and pictures drawn by little kids that were sent from people who were praying with us. Someday when John is much older and it is time to talk to him about his transplant, the donor's family, the cost of life, the blessing which God has bestowed on him and on us by keeping him here, I want him to see this. I have read several places about transplant patients having a hard time dealing with the thought that someone else died and they lived, survivor guilt of a sort I would guess, on that day it is my prayer that God will guide our words so that John knows that Christ died for him, that his life is so very worth it, and that there is no need to go back and try to repay people who gave so much, there is just this life to live under Christ's cross and in His mercy.