Thursday, May 29, 2008

All Through the Night... I would wake up just enough to listen to the monitor and make sure that pumps were running properly I was greeted with one of the sweetest sounds known to this mommy's ear - snoring, little quiet, barely audible snores, bringing to mind the image of a sweet faced little boy stretched out on his bed sleeping easily. This is the first night this week that John has slept through the night, I did hear him cough a few times but it seems like the nasty cold bugs are finally being vanquished.

Papa, Mark's dad, is on his way in for a couple days, then I will be taking him to meet up with Mark's brother somewhere in Kansas, and returning home only to head out to Omaha Sunday afternoon. John is going to have a nasal scope done early Monday morning to see if there is something up there that is contributing to his frequent colds and such. We'll get to visit with our friends the Bakers and hopefully take in the sights at the Omaha Zoo and then be back home just in time to go to Oklahoma to visit with Mark's brother and his family and gather Papa and his stuff back up and bring him here to visit for a couple weeks.

We have the privilege of having Papa's company for Father's Day, so to celebrate this Father's Day in style I have visions of beef tenderloin and maybe some Milwaukee Million Dollar Pie or some such thing dancing through my head, along with some good beer, John and I will have a great time celebrating with 2 of our favorite dads. Maybe I'll get some news and pictures posted before Papa goes home later in June, maybe I won't but you can bet that afterwards there will be pictures to show off and stories to tell!

Saturday, May 24, 2008

Raging Ear Infection

Well we finally know what is causing John to feel so bad, according to his pediatrician, whom we love, he has a raging ear infection. We had this confirmed on Friday while we were in town for other appointments. This is only John's second ear infection and the first one we never knew about until it was over. We figured it was this because at breakfast he took his ear out, gave it to me, kept sticking his finger in that ear and finally told us that it hurt. I imagine that it must have for him not to want his hearing aid in. Because we can't count on his absorption of medicines through his gut he got one huge Rociferin shot in his leg, he screamed, he cried and just like Dr. Beal said within 15 minutes not only was he over the shot but he was already starting to feel better and within the hour was ready to have his hearing aid put back in. I love it when medications work that quickly!

We had a nice conversation with Dr. Beal, he's been John's pediatrician since John was a little over a year old and we treasure him. He wrote John a prescription for his power chair and will also take care of letting medicaid know that it is really necessary for John to travel to Columbia for physical therapy because, go figure, there isn't a pediatric physical therapist here with access to a gym, which John needs. We talked a while about the disgustingly tangled web of red tape that government anything is and lamented that it looks like our country is traveling the path of universal health care. I still can't believe that thinking people can support this, after all one entanglement with medicaid, medicare or even worse the VA should let you know that you don't want these folks in charge of everything. Okay, off the soapbox and back onto the sweet boy.

We went into town Friday for John's first appointment with his new nephrologist, Dr. Groshong. This is the nephrologist of our dreams! He is kind, knowledgeable, actually has had several prune belly patients, takes the time to explain and answer questions, insists that all a patients doctors talk to each other so that they do not get at cross purposes and realizes that it's important that John get to be a little boy not just a patient. We are thrilled with him! He did tell us that while John seems to be in no immediate or even near future danger of kidney failure that these kids do have a tendency to outgrow their kidneys and we'd have to cross that bridge when we got there. He also told us that new research has shown that the big surgery that other doctors kept wanting John to have for his ureters and bladder are infective and do nothing at all in the long run for them. He is going to be monitoring John's blood pressure closely and we are looking forward to the next appointment with him in 4 months!

We went out to HuHot for my birthday and John was a hit with the wait staff as always. He was so cute trying his hardest to imitate Mark and pick up pad thai noodles with chopsticks. Today he is continuing to feel better, despite an ever snotty nose and icky sounding cough, but he had enough energy to take a walk around the block. His new favorite thing is for Mark to run in front of him and then he tries to run to catch up with him. It amazes me that this is the same little boy who not quite a year ago could barely go this distance with the seat in his gait trainer.

We are so very thankful for the blessings of improvement of health that God has brought into John's life. For the plethora of medical people who care for him and for everyone who loves him and prays for him. Each day we are amazed by him and never has Omi's phrase 'love you wonderful' rung so true as when Mark uses it for John, these are the things that makes being a mommy the most wonderful job in the world.

Thursday, May 22, 2008

Monkey Days

Today John woke up smiling, playing and I can hear him chattering in the other room to his daddy. Despite the rain, the overcast skies and the general gloominess of the day, here it feels like the sun is just peeking out from behind the clouds and everything is looking up. John's nose is pretty runny, but that's the last vestige of the past few days. Monday John's labs looked very good, but we could see in his countenance that something was amiss and could just feel ourselves bracing for what might be coming. That look, that tired, not quite so interested look that took over Monday night developed into full blown monkey days on Tuesday and all of Wednesday afternoon. We call them monkey days because John feels so bad that he lays in the floor and watches episode after episode of Curious George and while he will still sign to tell us which episode he wants, and imitate the show a bit, mostly he lays there with his own stuffed monkey and watches. He needed a little fluid bolus on Tuesday afternoon, but there was no fever and since he was coughing a bit we figured it was another cold thingy coming on. Wednesday morning he looked a bit better and was ready to walk and play in the basement while Mark and I got stuff ready for another garage sale this weekend. For an hour or so he was having a great time running through the blankets that were hung on the basement line, touching everything he could touch and making sure that the dog wanted nothing to do with being in the basement. We could see his energy start to drain though, but when we took him upstairs he still had enough umph to play his video game for a while and then to watch the videos on YouTube and then well we were back to a monkey afternoon. We gave him a fluid bolus through his g-tube last night and let him sleep and this morning we have snot everywhere, but behind that snotty nose is bright cheerful eyes, a willing and even mischievous smile and while we may end up with a monkey afternoon, or evening, it sure looks like we are going to have a good morning.

Sunday, May 11, 2008

The Wheels Keep Turning

Except for a couple times of very serious acute illness, from the first moment that I met John I could see in his eyes that the wheels were continually turning and he was working things out in his head. Because his expressive language skills lag so far behind everything else we often don't realize just how fast those little wheels are spinning until he has something worked out and can show us.


This picture looks much like any other picture of John scooting around - what's amazing about it is that he was laying down in bed a few minutes before this and dad just came to see the new trick, he didn't help. John is still unable to go from laying down to sitting up unassisted but if he scoots, scooches, or rolls out of bed just right he can sit up by himself. I'm not sure exactly how he does it because I don't get to see him until he's already scooting around. Of course, this means that nap time is non-existent, nothing in his room is safe and putting him to bed at night can take multiple attempts. Even this small frustration doesn't erase or cloud the joy that we have over this newly found bit of independence.

John's appointment in Omaha went well last week. The best part of any Omaha trip is the time that we get to visit with the Bakers. We always have a great visit and it amazes me that John has some new trick up his sleeve each time. This time at the dinner table he turned and looked at Chick #2 and started to gag - the Baker chicks are especially sensitive to gagging - poor Chick #2 reacted just like any kid who thought that he was going to get hurled upon and while he was trying to get away from John, John turned and gave me that evil little grin, the one that accompanies every new ROTTEN thing that he learns. I've always known that some of his gagging and such was on purpose to get out of stuff, I just didn't know that the rotten little stinker figured out how to tease, pick-on, annoy other kids with this. I should have known, and it paid off later. We're in hopes that John's little rotten streak won't rub off too much on the Bakers and that their amazing penchant for memorizing the catechism will rub off on him.

After enjoying the Baker hospitality we were off to Omaha for John's actual appointments. Poor kid had to be stuck 3 times to get enough blood for labs and ended up with a quarter sized bruise on his arm from one vein that blew. I was tempted to make them start drawing from his line from now on, but the news that we got later in clinic negated that idea.

Before we actually got seen in clinic, appointment time and being seen can be and often is a couple hours apart, we got some time to catch up with fellow-back-pack-boy Quintin and his mom. We hadn't seen them for a while and were impressed with how old Quintin is looking with his new big boy hair cut. They are heading home to Georgia and we're praying that all goes well and thy get their soon - there just really is no place like home.

John has lost about a pound, but actually I think he lost a couple over the recent intestinal virus and is already gaining again. His labs were great, his liver numbers and triglycerides are still a bit elevated but that is to be expected right now especially with him getting most of his calories from sugar. He's just a bit taller, a smidge, and Dr. Sudan was very happy with how he looks. She has cut his IV fluids back again this week and next and if he can keep his lab numbers looking great and gain a bit of weight in these two weeks then she is going to cut them even further and when we go back in June we can start talking about taking his central line out. His line is a serious double-edged sword and we all want it out before he has a chance to get another nasty infection which not only endangers his life but also sets him back in every way. Getting and being able to keep that line out is a major step on the road to John getting to grow up.

The next major step to his doing well and having his best chance is getting him to eat real food and the more of it the better. Ideally he needs to eat all the calories that his little body requires, about 2000 a day, but hopefully he can at least get a significant portion from real food. This makes total sense to us as real food is much better for him than living on corn syrup solids, soybean oil and artificial vitamins which is what his formula is. With few exceptions short-gut kids are notoriously poor eaters and so are kids with kidney issues so that kinda backs him into a pretty tight corner.

Dr. Sudan talked to us about putting John in an intensive feeding program. That would mean that John and I would be living in Omaha for a month this summer and John would be in therapy 8 hours a day for the duration. This sounds like a particularly sadistic level of hell to me, so while we agree that John MUST eat, and if all else fails feeding therapy is the road through hell that we must travel, we are trying an alternate route for the moment. Since getting home from Omaha we have been making John eat a half dozen or so bites at each meal. This has not been enjoyable - but thanks to his little trick with the Baker Chick we knew that gagging was fake and promised him the spanking of his life and a whole new plate of food if he puked - funny, he immediately stopped gagging. Last night he finally voluntarily ate on his own, okay he was bribed with getting to play his new Reader Rabbit Toddler game after he ate, but it worked, and we were happy. This morning knowing that we were in a hurry to get to church he ate his two bites of toast and refused both egg and the strawberry that he asked for. He knew that we couldn't be late and we wouldn't not go. What he didn't know is how fast our wheels turn and how long we remember stuff. When he got home he got to do NOTHING until his eggs and strawberry were eaten, he did it pretty willingly, at least for the moment we seem to have struck pay dirt on this one.

But as I said those wheels continue to turn, and quickly, so I don't know how long he'll stay out-foxed. Maybe he'll be distracted with learning other things. So far this week he's learned to unscrew a screw on cap, to hold onto the bed and walk right (he's been able to go left for a while now) if there is enough incentive, dad's CPAP is that way, and that if he pulls his backpack up next to him and holds it when he scoots around it won't get caught around corners - who knows what's next but I'm sure going to enjoy watching even if it's something that drives me crazy.

Saturday, May 3, 2008

Joys and Trials of Change

This year seems to be the year of change for us, positive things definitely, but change is change and that isn't always easy to take as you can see...

Photobucket preparing for the city-wide-garage-sale here we decided that John needed to get out of his crib and move on to a different bed. We've talked about this for quite a while, ever since he could put a foot in the bars on each side and shake the whole crib, and most certainly since he started to kick so hard that we were afraid that it wouldn't survive. We told John that the crib was going, but alas once he realized what dad was really doing, well, you'll see...


...silly kid. Of course with the crib and changing table out of his room there is now much, much more room for parking his jeep, plane, gait trainer and who knows what else will end up in there. For now he is sleeping on his crib mattress on the floor, eventually, later this year we hope to move him to a single bed, but for now this seemed like a painless, read you can't fall to far out of it, way to learn to sleep without bars.

Since he got up at 7am this morning and then 'helped' with the garage sale by walking up and down the driveway all morning and monitoring everyone who came we thought he'd be ready for a nap this afternoon, we were wrong. He wasn't, but he did realize that he can roll out of the new bed and go get some toys, and maybe this will supply the incentive that he needs to finally finish learning to sit-up by himself.

Getting rid of things and moving things also meant that his gallery of stuffed animals could now have a home that didn't involve black trash bags in corners...


...I'm not sure exactly why John is choking this poor stoat, but after this he proceeded to get most of the animals out, give them drinks, make them 'talk' to each other and a few of them even went for a complimentary flight, oh well, Mark tells me that boys really do play with their stuffed animals this way.

Of course this afternoon during church I finally had the last straw when John scooted up to the elevated portion of the floor that the pulpit stands on and started marching the stuffed panda across the front of the base of the pulpit, hmmmmmm, this just doesn't seem like the place that panda's need to be. The poor panda had to spend the rest of the service in the chair in the bathroom, but the boy was marginally better behaved and of course demanding it as soon as church was over. Lol, I would have never given it to him to start with if it hadn't been so darn cute that he needed to feed the thing a fortune cookie, good grief.

Last of the pictures is one for John's godmother...

Photobucket going through things we found the hat that she made for him when he was a preemie size, actually it was a wee big at first, as you can see he's grown a bit, he was much happier when daddy helped him put it on an animal.

All in all John is doing well, he's actually getting over the end of the intestinal virus he was fighting, we're being able to push his g-tube feeds up a bit and he's starting to realize that if he wants daddy to understand him he's going to have to sign more words than one and point at the direction that daddy needs to go in. I was very worried about John's expressive language skills, but Mark assures me that he just needs to want it bad enough to overcome his physical inabilities and it'll all be fine. Daddy's know best, I'm sure of it. We have noticed lately that he is much, much, much more interactive with things that he is watching and is signing through shows and imitating motions, it's really funny when he is imitating Mark putting his collar on, if you didn't know what was going on you'd think the kid was trying to choke himself.

We are headed off to Omaha on Monday, early, early, as in I'm doing laundry and packing tomorrow, because we want to get in as much play time as we can at the Baker's before we have to head into town for appointments and such and then head back home so that we can get on with all the stuff we need to do here. I'm going to try to remember to take the camera, we'll see!

Thursday, May 1, 2008

What price independence?

Let me start this by saying that John is doing fine and I'll post some new pictures soon. He's fighting a little intestinal bug right now but he's fighting it at home and doing well. He's needing a little more rest, and a little more fluids than pre-bug but still has that same winning smile and cute little boy attitude as always.

John not feeling good though prompted us to visit a previous conversation with his physical therapist this week. At the first of the year we were asked for probably the 3rd time in John's life if/when we were going to consider getting him a power chair, a motorized wheelchair, at that time, as before when it was suggested we didn't think we needed to address this because after all John had his gait trainer. Well since he has gotten strong enough that he doesn't need the seat in the gait trainer to hold him up anymore, it also means that there is no place to rest if he needs it and though he can make it around the block, or through the hospital corridors and such when he is feeling good it takes most of the energy that he has and doesn't leave him a lot of energy to play with when he gets where he is going. I toy with putting the seat back in, but he does walk much better and much more comfortable without the hard plastic seat between his legs while he's trying to walk.

One of our earliest and also our constant prayer for John is that God will lead us to do those things for him which will let him attain the most independence he can achieve. In the past this meant a special chair for him so that he could sit at the table without one of us holding him or without being ineffectively propped up with pillows and such. This chair is much loved, and while he doesn't need all the features that he needed when we first got it he is still more stable in this chair than in any other seating arrangement. This is where we sit to work on really fine motor things so that he can concentrate his energy on making his fingers work and not have to worry about compensating for his lack of stomach muscles to hold himself up perfectly. His gait trainer has certainly opened up a world of independence for him, but he can't as of yet get in and out of it by himself and so still needs one of us to come and help. The time has come that he needs a form of mobility more efficient than scooting around on the floor, and more independent than needing one of us to hold it still so that he can get in or out.

We've started the process of getting John one of these Play/Robo Chairs. Medicaid is a long and red-tape laden road for this kind of equipment, but the price tag is way beyond what Mark and I can afford and the chair looks to be just what John needs. We are in hopes that John will get to try one out sometime this month and that by fall will have one of his own. I was worried that we wouldn't be able to put it in or on our current vehicle and we so do not want to purchase another right nor do we want to get another before we can pay cash for it which would take us a long time to save for, longer than the Medicaid slow dance takes but then we found this Powerchair carrier that will let us put it safely right behind the Jeep and with practice John should be able to even drive it up there himself. At this point we are excited to see these things come about, I see the times where John has wanted to go and do but just can't and it will be nice for him to have the freedom to do more of that, and also to have the energy to enjoy it when he gets there.

While we are on the independence bandwagon around here we are also going to be investing in a keyboard and mouse made for kids. We both think that John is smart enough to run some of the computer if he had a better way to access it. Those things too will take some practice but at some point I'm sure that he'll be able to negotiate himself around his own favorite YouTube videos and start working through some basic kid level games, and probably doing more than I imagine. We find it's also time to drag out the dreaded AET device. As much as I have disliked this thing in the past it would be nice for him to be able to actually call us from another room without having to cry or fuss to get our attention. This is the device that speaks when you push buttons on the screen, we've never figured out exactly how to integrate it into our lives or what use John would have of it, but now that he is trying to potty train and needs to go when he needs to go the use of it has become rather obvious.

All those times that Mark and I both wondered why we were born several centuries too late when we both thought we would be happier in times when things were simpler and more honest and disputes were settled with swords and six-shooters we, over the last four years have been given our answer, no matter what is wrong in this world at this time, being here where technology can bring independence to a sweet little boy is priceless beyond measure.