Black Friday Shopping

It's been a tradition in my family for several years to go Black Friday shopping, not just for the deals but for the fun of being out in the crowds and well somehow the excitement of shopping that morning is like the excitement others get at auctions and such. Normally I go with my mom, when she is here, or by myself and talk to her and my sister on the phone in Montana, so we are always doing this together. Aside from enjoying the Montana contingent of Black Friday shopping today, having Mark along, and our friends and their daughter there was also this little cutie that tagged along...



...and did great! He was a little dismayed when we woke him up at 2:30am and made him wear both a jacket and a coat, it was 22 degrees, so that we could drive the hour into Columbia, have breakfast and still make it to Walmart a good half hour before the doors opened at 5am. He stayed awake all the way into town and then enjoyed the shopping and only really started petering out on us when we got into the fabric store. Charming as ever he rode around with the fabric, but when it was time to go home he was pooped and ready to go. After some significant nappage he's up and ready to go again, but this time I think we'll just hang out at home, eat some leftovers and play.



As you can tell he's no worse for the wear and still having a Happy Thanksgiving!

Happy Thanksgiving!

The homemade cornbread stuffing is in the process of being made, the fresh vegetable broth is cooking down for brining the turkey in the morning and Mark is working away on homemade pie crusts for a nice spicy Pumpkin Pie and our version of Omi's gooey crumbly apple pie, the house smells like Thanksgiving and is reminding me of celebrating Thanksgiving with family when I was a kid. As a pastor's family we are miles and miles away from our families and find ourselves celebrating with a new kind of family, one comprised of friends, fellow Christians, and strangers, a different kind of celebration, but one in which we are very thankful to be in.

First and foremost I am thankful for forgiveness of my sins, faith and salvation given to me freely from Jesus Christ my Savior. I'm thankful that this same faith is shared by my family and loved ones. I'm thankful that those members of family that I miss most often, my dad, Mark's mom, my Uncle Fred, my Grandma, and Mark's best-friend Troy all shared that same faith and that this Thanksgiving they celebrate with Christ in person!

I am thankful for my family that is here and miles and miles away. For a loving husband who puts up with my craziness and continues to love me more each day, for our precious little boy who is so wonderful and for whom we are so thankful to have at home, for my family in Montana, Louisiana and Arkansas and various other states and Mark's family in North Carolina and Oklahoma who we get to enjoy in person from time to time and on the phone and email whenever we get the chance. For friends that have become so close that they are like family, the Sipes who are in transit to Wyoming and the Jacksons who live a couple hours north of us.

I am thankful for the friends and fellow Christians that we have, those in Mark's congregations who make serving Christ in this place a joy, and those that we've met through John's hospitalizations and those Loopers who have touched our lives in wonderful ways that we never dreamed of, especially the Bakers and Middendorfs.

I am thankful that I live in this country, the greatest country on earth ever, where I can worship without fear, where I can freely voice my opinion, where I can travel freely to go and see my friends and family and where I can enjoy my 2nd amendment rights to the nth degree or the extent of a paycheck at least :)

I could go on for hours and pages, I tend to be an optimistic person anyway and when it comes to listing those things that I'm thankful for there is no end, because there is no end of the blessings which Christ has showered upon us. I mention one more before the last, that I am thankful that this Thanksgiving we get to celebrate with Tiffany, our friends daughter, who despite some trials and setbacks in her young life is back on the path of success and taking one step after another to insure that she has the bright and wonderful future that we've all known she could have, and have prayed that she will live.

Finally I am thankful for this venue to share John's life and ours, to vent, to opine, to get on my soapboxes and to get out some of the talk, talk, talk that I'm wired to do.

Freedom of Choice?

While I was in town today picking up medical supplies for John, medicine for John and getting toner cartridges refilled for the churches I stopped by a little store that is snuggled below street level to buy a product that can't be labeled and although not quite illegal is certainly a hush-hush kinda thing. What was I after, in a country that would legally let me murder an unborn child even just for unproven research or smoke pot for medicinal purposes it is raw milk that I was after today. We had a cow when I was a kid, I miss her, no matter how hard I try to convince Mark he says that I can't get away with putting a miniature milk cow in the back yard with a big dog collar on and a glaring "Beware of Vicious Dog" sign, so I've been searching for where to get this beverage of my choice. In my own town I can buy soda laden with high fructose corn syrup, liquor of many varieties, cheap beer and milk from cows that have been given questionable hormones and antibiotics, not to mention juices from orchards that use who-knows-what kind of pesticides and yet it is the simplest beverage of all - milk straight from the cow, that I am willing to drive an hour one way to procur. I find it ironic that Freedom of Choice involves so many other things in our world and yet something so simple as what kind of milk we want to drink is regulated to the hilt. Now lest you think I'm crazy there is all kind of research that says that raw milk is better for you than pasteurized homogenized milk, and that raw milk from grass-fed cows is better yet. Over the weekend I'll put up a side-bar on the blog with all these things I've been reading of late. For now, I'm off my milky soapbox and getting ready for Thanksgiving. I have so much to be thankful for, I'll share some of those in the next post, and at the moment I'm thankful that I was able to procure some delicious organic grass-fed raw milk in nice recyclable glass jars!

Happy Dance!

When the news came that we were going home I was excited, Mark was excited and John well, John was interested, but when he heard that daddy was coming he was excited too!

It took a while to pack and load all the things that we had accumulated/brought to Omaha. As you can see in the picture when it came time to load John was ready to help, he grabbed the cart thingy and was dragging it through the room, well past the first load of stuff that needed to go on it. When the 2 carts were full, he was so good to follow us down the hall and get on the elevator and then while we were trying to figure out how to put all this stuff in the Jeep he ran around in his gait trainer, never straying onto the driveway or running into anyone, he was definitely a big helper.

Finally all was in readiness, the inside of the Jeep was so full that to get John out later on the road we had to unpack the side of the back seat and even had to set things on the ground. There were suitcases and the bicycle stroller on the roof and on the rack on the back that Mark got for carrying home dead deer there was a pile of stuff that came half way up the Jeep's rear window. We must have looked crazy traveling down the road but the most important part was that we were going HOME! We were only there for 76 days, there are people who live in the Lied center for years hoping that the day will come when they will get to go home, so most of all we just felt blessed to actually be taking our little guy home.

I was a bit worried that John wouldn't remember home. He slept for a good bit of the drive and was sound asleep when we pulled into Slater, but when we pulled in the driveway he woke up, took one look at the house, did his happy dance that is usually reserved for McD's or school and told us 'feed dog' and 'in' and was so excited to be here. Lucy was happy to see him too, and they spent a few minutes snuffling and petting and then it was time to get a little boy in bed. Even though we got home about 3am we had to take one more picture of John in his own bed before actually going to sleep.



John slept for a couple hours and then woke up and needed to be changed, cuddled and talked to a bit and then went right back to bed and slept for several more hours. Unlike our Lied room, John's room has doors that close and is completely dark, but it didn't take him long to readjust to home life and he is now sleeping in his own bed again.



Our friends, Becky and Elmer, came to see us this weekend. John was thrilled to see them too and spent the weekend showing them just how big and strong and silly he has grown. This morning Becky was making the Mickey kiss John's cheeks and then he reached out and bit his nose and sat there wagging Mickey around by the nose, we were laughing so hard we almost missed the picture. Of course if you're going to bite a mouses nose...



...you should bite his tail as well.

It was great to have our friends down to visit and we look forward to their return for Thanksgiving, this time with their daughter Tiffany, John will certainly enjoy all the bubbles!

It was also wonderful to attend our own church for Saturday evening communion services, there is nothing that says home like hearing the Word preached by Mark, sung with Judy playing and tasted too. John did pretty well in church, sat in Becky's lap and Tide-sticked himself for a while, and is now loud enough when he gets to talking that he really needs a husher.

We are still settling in, not too long before we left for Omaha our basement flooded and we did a whole house musical rooms, moving Mark's study from the basement to our bedroom, our room to John's, John's room to my sewing room, my sewing room to the living room and my computer to our new room. In the middle of this John and I left and poor Mark was left home with the chaos and the wife who called on the phone and said things like, 'oh thank you for moving that table, now I've changed my mind and don't want it there anymore.' He was always nice on the phone and as there are no new dents in anything around here I'm suspecting that he didn't throw the phone after I got off either. Good husband! So now he has succeeded in making us an entertainment center out of three bookshelves, a computer desk out of one bookshelf and rearranging closets and house and all of it with just a bit of my help when we got home. Of course John has enough energy that in the middle of all this he pulled each and everything he could reach down and giggled when it spilled across the floor, oh and then ran through the contents of whatever it was.

So if there is some kind of blogger award for the husband who has put up with the most craziness and still remains as sane as ever, nice to his family and sweet too I'm nominating Mark for it!

Day 76: WE ARE GOING HOME! TODAY!!!!!

This is Quintin, John is giving him a ride on his gait trainer, just a few seconds before Quintin was pulling John down the hall. They are so cute together and as glad as we are to go home I think John is going to miss Quintin.

There have been so many blessings brought about here. First and foremost is John's health. We are thankful to God that He has given such amazing talent to these people and that they are so close to our home. Then, well then there are the new friends, they have kept me sane and I'm so thankful for them, but at the moment I have got to PACK while the piglet is sleeping.

Thank you so much for everyone's prayers and I'll update again when we get HOME!

Day 75: Focus Power!

I have none. Ever since the word 'home' was spoken in clinic last week I have been unable to focus on anything. I can't really even focus on home, inside my head I'm just bouncing around from this to that and nothing and well, anyway, clinic is in the morning and then I'll either know that we get to go home and be way too excited to focus on anything at all, or that we aren't going home and be just too bummed to focus, so I'm thinking focus power isn't going to be acquired for a while.

During my befuddlement John has been doing FANTASTIC! His labs today were great and he's been a wild child running here and there and giggling and carrying on and just being a fun wild little boy.

Tonight John and I had a special treat. We went out to dinner with some of the Looper mommies that we've met online, and got to laugh and enjoy the evening together. John just loved it and had a great time playing with Charity and even got a few pictures taken, Charity should have them up on her blog, Lutheran Hen pretty soon. It was nice to put faces to some of the names that we've met on line and it sure was a wonderful distraction. We are looking forward to getting to enjoy these ladies company again!

Day 72: RUN d a w d le RUN d a w d l e

Today John was excited to walk, and run, and then he would dawdle, and people would stop to encourage him to walk further and he would of course be looking at them and then at me like they were crazy. Silly kid, despite the snotty nose he did get to run and play a good bit of today and this evening went to visit Dalton, a little boy who is in the PICU whose mom visits with us during meals at the cafeteria often. John was a bit intimidated by the PICU but was handling it well right up until the nurse with the yellow gown and mask came his direction, then he started crying and looking for a way out.

I'm excited to see his energy level picking up. He's up at 8am now, he still needs a 3 hour nap at about 1, but then has the energy to run and play all evening. This is new, since surgery he's really only had the energy to run and play a bit before lunch and not much at all afterwards. I'm excited to see how his energy level picks up as the days go on. The other exciting part is that he's doing this on less and less TPN and more and more g-tube feeds. Prior to surgery John was down to the point where he could only tolerate 10ml/hr of 16 calorie formula, this is less than he could handle at about 18 months old. Now he's up to 47 ml/hr of 20 calorie formula and will go up another ml tomorrow. The more he can do with his gut the better off his liver is and the closer he is to getting rid of that central line.

We continue to be thankful for your prayers, love and support. We are constantly reminded here how precious life is, and pray for the backpack boys and the cancer patients and all the families and hospital staff that surround us that they will be strengthened in their faith, or come to faith in Christ, and truly know just how precious life is.

Day 71: Little Miracles

I find that in life it is not so much the big, mountain top, take your breath away miracles that keep you going from day to day, but the little blessings, those things that work out just right when you need them too, even when you expect the worst. I went to bed last night worried that we wouldn't find John's hearing aid, hoping that if someone found it they would turn it in. I woke up this morning and searched our room again, went to all the places that we had been and checked every conceivable place that someone would turn in a little red and silver hearing aid. By the time lunch rolled around and still no hearing aid I figured it was gone for good and we would have to go through the process of getting it replaced.

John's favorite backpack boy was at the Diagnostic Center when we went for labs, so he got to play with Quintin and I got to visit with his mom, this was a really nice break as we weren't able to go visit with the Lutheran Hen and her Chicks today because John woke up all snot nosed and icky feeling. When we all went to lunch and I picked John up out of his gait trainer I found his hearing aid, it was hanging on one of the straps on the gait trainer and had been with us the whole time that I was frantically searching for it.

Option Care, John's home health company, called during lunch to tell me that his new g-button was in, the tube that he's been putting up with hurts and pulls on him, so this was fantastic news. His labs look good and at home Mark found an index for the Bull's Notes that I was supposed to start indexing for him tonight. John has had a great day, he's needed more sleep and rest than usual but in the middle he's also had more energy and ran and played more than he's done recently too. Oh, and it looks like if he continues to improve we will get to go to church again this Sunday, we haven't been since before surgery and we miss it.

Despite John waking up with a snotty nose and puking snot this morning the day was full of little blessings and now the best little blessing of all is falling asleep in his bed, so far without puking his night time meds!

Day 70: Going Home?

At clinic we asked Dr. Sudan what the criteria was for John to go home. She told us that if he can make it through the week without any incidences that next week we can talk about going home and just coming up for clinics every other week. We're excited! The other news from clinic, John has gained almost another pound, he's up to 26 pounds 10 ounces, and he's grown a half centimeter since last week too. His labs are looking great and both his liver and his kidneys are hanging in there. His TPN was turned down from 20 hours to 16 and he's continuing to advance on his g-tube feeds. His JP Wound Drain was taken out and he is feeling better and less ouchy every day. John's blood pressure is not coming back down to normal, will it, only time will tell, but Mark and I are wondering if he would have had a blood pressure problem earlier if he hadn't been so malnourished that his heart rate was down to barely over half of what it should have been.

We had a great visit with Mark. John was so excited to see him that he ran across the last few feet of the distance between them with his hands held up for a hug and squealing 'daddy' clear enough that dad certainly heard his name. John got to show dad his cool magic trick, where he pulls a napkin out of his sleeve after showing you that he doesn't have anything in his hands. He learned to sword fight with plastic knives, and loved getting 'stabbed' so much that if Mark didn't 'stab' him often enough John would 'stab' himself and then clutch his 'wound' and giggle.

Mark is on the way back home now. I must say that as a wife it is certainly hard to say good-bye to the other half of my heart and watch him drive away, but hardest of all is being mom watching a little boy hug and kiss and wave and blow kisses and then miss his daddy. Every so often I see him just thinking and staring and then he will tell me 'daddy working'. Believe me, I am praying that this week passes with no incidences and a little boy gets to go home and see his daddy every day.

Of course before we could finish out the evening one of John's hearing aids is missing, good grief, but at least this incident isn't one that would keep us from going home.

So after all this blabbing I have pictures to share. The first is of John and dad.



This picture is of John with his pumpkin, a gift from one of the cafeteria ladies. Most days John and I eat in the cafeteria 3x a day, so we are very attached to the nice cafeteria ladies and they are quite attached to John as well.



And these are of John receiving a very sweet present and a nice letter from Dr. Rashmi, of Columbia Children's. She sent him a back-up Tiger in case his first one goes missing again and a lovely letter.







It is thanks to the expertise of Dr. Rashmi and the other doctors and staff at Columbia Children's that we are here, and thanks to them that we could get to come home before John's central line comes out. Each day we thank God for these wonderful people.

Day 65: Irrepressible Smiles

John woke up this morning with irrepressible smiles and most of the day was full of smiles and giggles.

Here's the promised tattoo picture...



...of course he was much more interested in us going and then when I told him that Spider Man was on his shirt he was all excited, at least for a few minutes, but then he wanted to GO! One of the young guys that works in the cafeteria was dressed as Spider Man for Halloween and came out of the kitchen to let John see him. John was all wide eyed then, but this morning he was pretty excited.

When we went to have blood drawn this morning he was such a good boy, the lady that drew his blood was so impressed and then on our way out of the Diagnostic Center we ran into another one of the 'backpack boys' Quintin and his mom Aaron. We went to the cafeteria with them for lunch and John was wild, laughing and giggling and excited and even took a couple bites of food, one Cheerio, showing off how he could 'drink' them out of the box, and one bite of spaghetti from Aaron. Quintin though John was pretty funny too and so we are probably going to be meeting them for lunch again tomorrow.

The weather was beautiful and so we took a nice long walk outside, phew, we both needed that shot of sunshine.

After John's nap he again woke up with irrepressible smiles and giggles and while I was turned around working at the sink he was squealing with delight and when I turned back around I saw the reason, he was holding his cup and watering himself, he was obviously ready for another water 'fight' with the Chicks.

He finished up the evening by entertaining the cafeteria and then finally by giggling and laughing while daddy was on the phone with us.

The wound drain is slowing down again, and it's clear again, John's labs were fantastic and I was able to turn his g-tube feeds up to 40. Mark is coming on Sunday evening, the new caster/wheels arrived today and so he is coming with wheels and shoes and hopefully within a couple days John will be running the hospital hallways again.

Day 64: Shock to Shenanigans

The shock was for me. In a discussion about John's JP-drain, wound drain, continuing to drain the nurse coordinator used the words 'end stage liver disease'. So we talked about how John's liver cirrhosis is serious, but if he gets off tpn and remains healthy he could do fine. Regardless, just using the words 'end stage liver disease' was still quite shocking. We know that John's health is fragile, we've known this since day one, it's just that there are moments in time when reality slaps us in the face. These are the times that we continue to remind ourselves that John is in Christ's hands, and that His will is perfect, breath deep and keep going.

Despite the shock of the words today John is doing very well. I'm a little concerned that his JP-drain is pink again, but hopefully that will settle down overnight and tomorrow's labs will show that all is still going well. I was able to turn his tube feeds up to 35ml/hr tonight and he was able to take the first bit of his evening meds and not throw up. Here's hoping that the second half goes as well.

The shenanigans, well those came with the Lutheran Hen's family. Charity and the chicks came into town to hang out with us and to go to the library together today.

The kids and adults had a great time. John loved having the Chicks push him around the library in his stroller. I think he got to enjoy more wheelies today that all the wheelies he's ever enjoyed before. And the Chicks, well they sure seemed to enjoy pushing that silly boy around.

Later back at our Lied room the fun continued...





...one of the things in John's Halloween booty was a teeny tiny water gun, well one water gun and 5 children is just begging for sillyness, so with some saline syringes as additional water guns the fun was on. John giggled and carried on and enjoyed being shot just as much, or maybe even more than shooting. By the time the water fight was over everyone one was at least a little wet, John and Chick#4 were both pretty darn wet and smiles were irrepressible. John enjoyed that the girls would give him drinks out of their syringes as well as shoot him, what a silly boy. John got his first tattoos today too, I've promised his dad that I would take pictures so I will post those tomorrow. Even when he was going to bed he was telling me that he had a pumpkin on his knee.

God always brings blessings from hardship, and the Lutheran Hen and her family is certainly a blessing that we are very thankful for!