Day 33: It's an 'R' Mom!

I'm sure if John could tell me in so many words I would have been told this last week or so when I was watching him work so hard to learn to cross his fingers. It never dawned on me that he wasn't crossing his fingers, after all that would be such a normal little kid thing to learn, until Julie came to visit and said something to him about making such a good 'r'. Well yesterday I thought about it again and asked him if he would make an 'r' for me and sure enough he looked right at me, crossed his fingers and held them up for me to see. Duh, no wonder the kid kept looking at me like I was an idiot when I asked him to cross his fingers please, poor kid, I'm sure he thinks I'm the one with a communication issue.

So here he is Mr.-I'm-Making-An-R-Himself



He does a lot of posturing to get it when he's sitting down, but standing up he doesn't. So we went through the alphabet this morning and he can make an a, b, c, d, e, f, a decent try at a g, not so hot on the h, still can't do an i, j, k, l, but isn't too bad at m, n, and o, has the right hand position but the fingers still aren't right for a p and q, is a great r maker, he makes an s that is perfect, he's been doing a t for a long time, and has trouble with u, v, w although I was watching him work on this one in the hallway earlier, and still has problems with x, y and z. All in all I thought it was pretty darn cool!

Lot's of things are changing and they are changing lightening fast. Two days ago I could walk around the corner on the 1st floor of the hospital and watch him in the mirror and even though he wanted to go the other way he would stop, think a minute and then turn around to come and get me or go my way. Not now! Yesterday I stood in my usual place watching him and he stood in his usual place around the corner and thought, then he backed up nice and straight until he could see me, smiled the biggest I'm-doing-it-my-way-see-ya smile I've ever seen on the kid, and took off down the hall. He has gotten fast enough it was probably a good 30 feet before I could catch him. He now stops here and there along the hospital route to tell me about the pictures and statues, insists that his cup is filled at every water fountain whether he is thirsty or not, wants to push, ram or in some other way man-handle anything that he can get his gait trainer up against. He has no fear of going down new halls and will actually slip onto any open elevator and run through any open door if he thinks I'm the least bit distracted. Needless to say I don't let him wander as far ahead of me any more and I don't chat on the phone while he is loose anymore.

John has always been a smart kid, whether he looks it or not to strangers those who have worked with him are always amazed at just how much horse power is in his head. Let me tell you the horses are on high-octane feed and running for the back fence. He is figuring out stuff at rates that I've never seen him do before and is getting more social all the time. He is waving more, smiling more, and just in general more interested in the people around him. He is now fascinated with the kids and has walked into more than one wall, post, etc., because he was turned around looking at what the kids were doing. At the same time he is eating more, it's still cereal and half the time he has to either have Tiger taste it or feed it to him, but still he's eating more. The whole thing with Tiger is all new and fascinating and changing too, this morning it was cool that we left Tiger when we were headed to church but when we came back and got ready to leave for the cafeteria he was almost out the door and then told me Tiger and ran back to get him before we left.

I am so thankful that Mark is coming on Tuesday evening so that he can enjoy this wonderful little boy who is becoming so much more little boy every minute. Surgery is coming on Friday and while I don't expect that John will go backwards, he never has, not even when he was septic, near death and intubated for a month, but I don't think that he'll progress much and most of his energy is surely going to be spent on healing for a while. For the moment his energy is being spent on growing and running and learning and playing and being silly oh, and impressing his mommy at every turn.

So I can't resist one more picture, it's the same outfit as this morning, his very first time in a couple years to have a real button down shirt and he was so impressed. Omi, Mark's mom, told him that every man and boy needed a good white shirt and tie, well we don't have the tie and since his dad doesn't wear one I'm not sure how John would like it, and the shirt's not straight white but it sure was making me think of Omi this morning when John was sitting there all spiffy and smiling.

Day 32 Still...but this is too perfect to be missed!

A dad sings about life with kids!

Day 32: Smiles, Snorts and a Double Chin

Friday came and went, mostly we ran and ran and ran. We did have more pump problems but met the nurse, Julie, in the hall and she evidently has the magic touch because the pump has been working for nearly 24 hours without a single inappropriate beep out of it. Thanks, Julie!

Last night John was awake until nearly 1am because he couldn't stop giggling, smiling and being silly. Every time he'd get himself all most to sleep I'd hear him kicking his feet and then he'd giggle some more. This morning after he woke up with smiles, he decided that he wanted to snuggle with mom for a bit and so laid next to me and snorted and smiled, and snorted and smiled, making sure that I was watching him and smiling too. I was, how could you not, what a silly kid. I noticed while we were laying there that John now has a nice little double chin!

The rest of our Saturday will probably be spent running and running and running, today already we found a new hill to run down, reminds me of the hill in front of Papa's only shorter in distance and steeper too, I really think John is going to have to wait for Mark to be at the end of this one to catch as he comes down so fast it's all I can do to get him stopped before he hits the curb on the other side of the driveway. The couple times that we did it though it was fun and reminded me of my sister's boys riding their big-wheels down the hill behind the house.

For the moment we are in the room to make the bulletins for church on Sunday and answer a few emails but then we will be off to the races again :)

Day 30: Hanging out for deliveries

Today has been a day of wait, wait, wait! John's central line was sluggish this morning so Julie, the nurse from Option Care came and did an enzyme treatment on it and got it working again. It was fun to visit with her and John enjoyed sharing his "Five Little Monkey's", Julie does a great "no more monkeys jumping on the bed", John was impressed. Later his pump starting acting up again and so we had to wait for another one and then that one started doing the same thing too and it too had to be replaced. So for now we are on the third pump of the day and it seems to be doing fine. John has had a great day, the waiting just meant that we had more time for reading books and having fun.

Day 29: I knew there was something in there

John has walked and walked and walked and even ran a good bunch of this day. Tiger has gone down for two meals and was put to bed for supper, and then promptly gotten back up as soon as we got back and hugged and kissed and talked to. John actually ate today, at least better than he has eaten in a while! His favorite thing lately when we are coming back to the room past the front of the postage machine is to stick his hand in the coin return slot, tonight he just kept at it with a determination that I'd not seen before, and then he got this huge grin on his face and came running to show me the quarter that he had found. I wonder how long it's going to take him to figure out that all vending machines have these magic places on them :)

Day 28: Surgery Date, New Friends, Hard Work

Well today John has an official surgery date: October 5th. It's still called a tentative date but that is only because it requires that John reach that date without getting sick. So the plan is that John will go NPO, nothing by mouth, at midnight on the 4th, be admitted for surgery on the morning of the 5th, having surgery, go to the PICU, pediatric ICU for 24 hours for observation, mostly because he is just so darn little, then be in the hospital for a week on just TPN and lipids to give his bowel some healing time, have an uppper GI with small bowel follow through test to see how much small intestine is there and make sure that there are no leaks, then they will begin to feed him, at first just formula through his G-tube and work him up to full feeds. He will probably need to remain in the hospital for a couple weeks working on this before he is ready to go outpatient again and then we will be back in the Lied center hanging out until he can come completely off TPN and lipids and have his central line removed. Anything, even just a minor cold will delay, change, etc., but we know it's all in God's hands and so just say our prayers and keep going through our days.

Also at clinic today we found out that John has gained 200grams, that's about 7 ounces, doesn't sound like much but believe me I can see every ounce of it. He's actually starting to look somewhat chubby to me, but that's because when he came he here wasn't much more than just skin, bones, smile and attitude.

The last couple days have been a whirlwind of sorts and we are looking forward to tomorrow with no appointments and time to just hmmmmmmm, well probably time just to run the hospital hallways because that is what John likes to do the best lately, although we are going to get some book reading, block building and such done. It will be a great time to get another project out of the box that Julie and her kids sent to us, John loved the ants and I know that he will love the next one too.

Monday was full of appointments and new friends. We started out the morning in PT where John is walking even better in the parallel bars, forwards and sideways and then in OT he was sorting colors and stacking blocks more readily and even managed to get a decent arm workout when he was put on a peanut ball to work a puzzle. I don't know who invented a peanut ball but I think we will be looking for one of these, it's the best arm workout I've seen the kid get yet. Ummm, think of big exercise ball, kinda squeezed in the middle to make it look like a peanut.

On the way out from PT/OT I noticed that the lower pane of glass was broken in the door, ugh, the same door that John rammed on the way in. So since then we have been practicing being nicer to doors and such, he should have had his little monster shirt on that day!

We finished those appointments in just enough time to get to John's hemotology appointment. That doctor thinks that John probably has more of a platelet issue than a clotting factor issue. He sent us for lots of labs and will be monitoring the results and will be on-hand for John's surgery to make sure that he is both prepared for it, and if a bleeding issue arises during surgery that he is there to help.

In the treatment center John had a great time making the bed go up and down and smiling at all the nurses and patients that went by. This is a treatment center that is used by lots of cancer patients, where they come to get their chemo-therapy and John loves to smile, wave and flirt with all the patients coming and going and brings smiles to everyone. Mark and I have dubbed him the Spreader-of-Joy, and he lives up to it every day.

Monday evening was quite a treat for us, and a chance to meet new friends. Charity and her four children came to pick us up and take us to her house for dinner and some time just to visit and be in a real house. We couldn't have asked for a better present, it was so nice to get out of Omaha, to be in a house with rooms and chairs and books and toys and life, and to meet Charity and her delightful family. The kids showed John their stuffed animals, talked to him, even looked up the sign for Buffalo and taught it to him, and then after supper they stacked blocks for him to knock down, he was in heaven. It was so nice to talk, laugh and visit with Charity and her husband and kids, and we are looking forward to getting to visit with them again.

Today our only appointment was clinic this morning and then to go and get a lab pulled again, so another trip through the treatment center, John has a teeny tiny bit of redness around his central line and they are very proactive about making sure that it is not infected. After that he was ready to run, and run he did, I think we've been through the hospital half a dozen times and then he finally decided it was time for a nap.

On the way back to the room we met another family with a beautiful little 2yo girl that is here for a check-up and then will be coming back in a couple weeks for feeding therapy. Her mom and grandma were telling me about her, she started with only 11cm of small bowel, that's less that half of what John had left, and her doctors told her mom that they would just give her morphine so that she could die peacefully. Finally a young doc told mom that he had seen the STEP procedure in medical school and it couldn't hurt to try it. He did it and 6 weeks later the little girl was brought here. They lived here for 19months and had 2 more STEP procedures done by the same surgeon that is going to be doing John's and the little girl is now growing, developing and doing beautifully on g-tube feeds with no TPN. It's amazing to meet these kids, it's wonderful to see them succeed, and it's great to see their families that love and care for them and continue to hope and go and do.

When he woke up from his nap and was ready to go down to supper Tiger had to go with us again. It was so cute, Tiger was obviously the poison-taster tonight as he had to taste every bite of John's cereal and then the poor thing John fed him salt for a good while. I was thankful that John wasn't feeding himself salt, but poor Tiger. Finally John took tigers little hands and told me that he was all-done and away we went.

We tried to go to the social gathering here in the Lied center tonight but nothing doing, that is located way too close to the doors that John knows he can open and run outside and so we waved as went went past. Tiger was along for the ride again, and John had a great time running through the hospital until it was time to come back to his room, then he was slow, drug his feet, and made that 'i'm-really-going-to-cry-in-a-minute' face, please child, I told him he could either walk or be pulled back and after being pulled a good 10 feet he decided that all-in-all he would rather walk.

Silly boy is in bed, he had to have some ice, after working on his PT homework for a while, John is getting close to being able to sit himself up from a laying down position, and then was ready for a few books and off to bed. We'll see what tomorrow brings.

Thanks again for all you're prayers, friendship and support, we are excited about John's surgery coming up and worried at the same time but mostly thankful to know that so many people care about and love this little guy!

Day 26: Rich Enough to Be Generous

God will make you rich enough so that you can always be generous. Your generosity will produce thanksgiving to God because of us. 2 Corinthians 9:11, God's WORD Translation

This was one of the focus verses in church this morning. John and I were thrilled to see Lillian and Calvin this morning and to ride to church with them. The congregation here is open and friendly, even though it was only our second visit there were hugs and handshakes on the way in and out. I can think of no words that adequately describe the choir, it's merely a handful of people, but they sing beautifully and fill the space with song that sounds part heaven and just a touch of Motown and all GOOD! Although the worship service was from page 5 of the hymnal, TLH, confession and real absolution was included, a welcome addition, especially in these days.

Pastor's sermon was based on the shrewd manager, a story that has always been a bit murky to me, but he explained it differently than I've ever heard it before and in a way that finally cleared the murk. Pastor Wilkens explained this morning that the land system at the time was one where a rich person owned the land and left the running of it to a manager. The owner told the manager how much he expected to earn from the land and the manager's job was to make sure that the owner was satisfied. The way the manager was paid was by charging the tenet farmers more than the owner's requirements and so when the manager was cooking the books prior to his dismissal he was removing his own wages. Exchanging short term profits for the ability to mooch off these people's generosity for the long term. Still not the nicest guy around, but planning for the future. Pastor explained that Christ was commending the man not because he mis-managed the owners land and got himself fired, nor because he was preparing to mooch long-term, but because he was planning for his future with what he had at the time. He went on to talk about money being a tool that God has given us to serve Him, by helping our fellow man and that if we can't manage money then we will mis-manage the Gospel as well. Finally he finished with the verse that I opened this with.

The verse itself is speaking of money, and we are very thankful at this point in time to be the beneficiaries of those who are rich enough to be generous, not just with money, but with time, prayers, friendship and support. We are also thankful to be rich enough to be generous ourselves, not just with the few dollars that we have, but with the joy and faith that we have in a God who planned for our little boy from the beginning of eternity and who even today has given him all that he needs. There are many things that we are able to share at this time, the one that pops to mind immediately is the way that John is touching hearts here, more than one person has received joy in the midst of their own suffering from our beautiful little boy and his generous smiles, waves and high-fives. We are thankful beyond measure to get to be his parents.

Now for the antics of the day, oh you had to know that he was up to silliness today too! Well not all of it was silly, some was just impressive, first off he behaved well in church. The candy lady gave him a piece of peppermint candy and once it was finally unwrapped he stuck the whole thing in his mouth, I told him to be careful and watched and waited for when he'd need my help cause he was choking. What a cutie, he sucked on and played with that peppermint for half the service and finally spit the itty bitty remains of it into a kleenex because he was done. During all of this he was paying enough attention to fold his hands for the Apostle's Creed and the Lord's Prayer, it always amazes me to realize that even though he's sitting in the pew playing with the bulletin or hymnal that he is listening too. After a good long nap he was ready to run and run he did. I wish all those people who walk by him why he's dawdling and think that they are encouraging him to actually move could have seen him today. He was going fast enough that I had to really walk to keep up with him, of course that was when he was headed to the parking structure that dad parks in, and when he was heading to the escalators. He was nice and waved to the other little back-pack-boy that we met. That's one of the nice things around here, often the kids that we see have the same little back packs and tubes and I can see that John is checking them out. He walked all over the place and when I finally had him heading back to the room I got busy on a phone call and was just walking with him and before I realized it he had taken a detour through the hospital and was back at the beginning again, little stinker. Finally he slowly creeped back to the room, he was excited to stop by the little convienance store but other than that well, he'd really rather go the other way. He's sleeping now, storing up energy, I wonder if that means that he'll actually do stuff for the OT and PT tomorrow or just wait and burn it all later?