.27 52.5 80% Still going, but might be home

Dad stayed with John last night and he just called to let me know how rounds went this morning. Everyone is thrilled with how John is doing today and actually talking about maybe sending him home tomorrow, but still consulting with Omaha, just maybe not doing a hospital-to-hospital transfer, we'll know more about that later today or so when we hear back from Omaha.

First off, fun kids stuff. John was feeling so much better yesterday. He was ready to walk, run and play. Since the place is pretty quiet on Sunday's he and I walked the halls of the medical school. He was fascinated with the safety showers in the halls on the 7th floor. He likes to run to them and stand under them and tell me that they are a shower. He is also quite thrilled with the big ramp that goes from the 7th floor medical school to the new burn unit. He needs help stopping on the first ramp, of course it doesn't help that he is running as fast as he can down it, but I'm sure if we didn't grab the gait trainer to stop him he'd at least make a dent in the wall, but in my minds eye I see him sailing over the parking lot and giggling all the way. The second ramp has more space at the end and he can bring himself to a stop before he runs into anything. Always he turns and with a smile holds out his hands to go back up the ramp, it's a steep and kinda slick one so he can't quite make it on his own. We explored lots of halls yesterday and at one point on the 2nd floor found this huge atrium that connects the medical school to the library and has doors to the outside, it was too hot to go outside yesterday so we just wandered some more. When we got back to the floor I thought he'd be done, but the feeling better kid ran right into the play room and told me 'ride' and pointed to the wagon. Ah yes, since getting to ride in a wagon the last time we were at SLCH he is fascinated. So I told him to go and park in his room and I'd bring the wagon. We explored even more floors at at one point passing all the radiology people, some of whom we know from previous visits to that floor, the one guy rolled out into the hall for a high five before we passed, he got a really big smile from the wagon riding munchkin!

Later when dad came it was time to show him the cool ramp, safety showers and then since it was cooler the atrium and outside we went. John was amazed. This door opens onto the university campus near the volleyball sand pit thingy and some big green field with lots of markings and a track around it. We walked and watched the hordes of college kids playing volleyball and lacrosse, and a bunch of things I never understood but all of it was fascinating to John. He was really thrilled with the kids that zoomed past him on their bikes and the gaggles of girls that stopped to talk to him.

So what's those numbers. Well the first one is the smell of triumph. John's weight today is .27 Kilos higher than he was yesterday, that is the very first weight gain that seems to actually be John and not either fluid from lots of IV's or poo that's hanging out and won't leave. .27 Kilos is 9.5 ounces, of course weight gain, much like weight loss is going to have to be calculated on some kind of sliding average to get a real picture of what is going on, but today we are celebrating over these few ounces because they are his first in a very long time.

52.5, that's the rate that his formula needs to be pumped at over a 24 hour period to have him at 100 cal/kilo at a weight of 10 kilos. The medical math is fun and interesting, well at least to me. John weighs 9.04 kilos today, but since he desperately needs to be at least at 10, we are calculating everything nutritional based on that. So he needs 1000 calories a day, since we can't count on his intestinal tracts absorption rate, we are only counting his formula/g-tube intake and not the 300-400 calories a day that he is taking in cereal, potato chips and such.

80% is the strength that his formula can be mixed, funny thing about John his gut has not ever really handled full strength formula from the beginning, one of the Docs at St. Louis Children's explained the chemistry to me a long time ago, something to do with osmolality (this could so be spelled wrong) and such that if I remember right boiled down to his gut needed more water to digest things than normal. Add that to the kidneys that don't concentrate fluids normally and John is left with an extraordinarily high water need, which probably explains why despite all the fluids that they are giving him he still wants more water to drink.

The advice that we got a couple days ago seemed a little well strange to our ears. Not only to skip all simple sugar and lactose, okay these didn't sound so strange but we were amazed to know that even if they didn't throw him into immediate diarrhea that they would rob him of calories and make him not gain weight. The advice that sounded strange to our ears and to which I will admit we were more than just a little skeptical was the use of Miralax. Short gut kids as a rule never deal with constipation, never, prune belly kids constantly deal with constipation, always, John has the best or worse of both worlds he deals with it periodically. So after many hospitalizations that looked like serious obstruction issues and such, we finally all admitted that yep, the short gut kid has prune belly issues too. After many attempts at suppositories, which the child hates go figure, and other laxative disasters Mark and I switched to home remedies, apple juice, a bit of syrup, etc. Granted these kept the constipation away for the most part, but in the end it was a contributor to the lack of weight gain and the more we let him have of it, the more I'm sure that it was a contributor to the weight loss. It really sucks as a parent to have to admit that we were part of the problem, I suppose that is not just with special needs kids/parents though. Anyway so the advice was to pull John off all simple sugar, no juice, soda, hard candy, syrup, etc., but that things like Frosted Flakes and Cocoa Puffs in moderation were okayish and treat his periodic constipation with Miralax. Since having the pharmacy sub that for one of his other meds a long time ago we were pretty gun shy of this idea, but last night it was time that it needed to be tried and so we held our breath and had the docs try it, after all he still had an IV in his arm and if needed they could get him fluids quick. The docs were right again, and we are sold, the next trip to Wally will be for Miralax!

John not being able to have juice and such is not being easy though, we tried Diet Sierra Mist, it causes the same problems as sugar, we tried Diet Pepsi, he's not impressed, I gave him some Diet Coke yesterday and he did okay with it, of course it was watered down, but we'll see. We have turned him into a little juice addict and now we'll have to break that monkey off his back. We're hoping that he will go with some substitutes of real fruit where juice formally lived, and believe me dad and mom are going to have to find a way to enjoy that too. Somehow though I'm sure that it will be better for all of us in the end, and after all if John is gaining weight Mark and I would do anything!

Big Tigers and Steps Back

We took John back to the hospital on Saturday night, thankfully we made it to the Saturday evening worship service, we both really needed that, but then later that night he started throwing up and so we had to take him back to Columbia. He spent most of Sunday looking a little better but then started really going downhill Sunday evening and by this morning he had a bicarb of 7, normal is 20, 7 is catastrophically low.

We are thankful that Trish was John's nurse today, she's been with him through lots of this recent illness and takes great care of him and makes us smile. We are so thankful that Kim, the IV nurse that knows John so well, was working today and she was able to get an IV in him on the second stick. John is notoriously difficult to get an IV on. We are also thankful that Dr. Meyer and Dr. Shrivasteva, I'm sure I spelled that way wrong, were there today too. Both of them have quite a history with John and both are excellent doctors. They were able to get fluids figured out and going that have got John feeling soooooooo much better. This morning he was unable to lift his head or arms, and could barely stay awake for more than a minute or two, tonight he is hanging out with dad, sitting up in bed, eating banana bread and drinking tea.

In the course of this they did find that John has yet another UTI, is that driving this or just part of the overall current mess, we don't know, but he is on IV ampicillin and gentomycin for it and it should be cleared up soon. They did draw blood cultures, no one really expects it to be in his blood, but always it's better safe now than sorry later. If the last UTI didn't seal the deal on him needing the bladder/ureter surgery, I'm sure that this one has, albeit they will have to wait for a while until he is strong enough to go through it.

Dr. Shrivasteva spent a good bit of time on the phone with our GI nurse practitioner in St. Louis today and they are formulating a plan to let John's gut rest enough to get over the current issues and then to start getting some weight back on this kid. So we are taking some big backward steps. The plan is to put in a PICC line tomorrow or Wednesday and start John on TPN. For those of you that have hung out with John all this time, yes, TPN is the IV nutrition that damaged his liver, but it's a double bladed sword and it will give his gut time to recover from the current issues and keep his weight from dropping. The trick is going to be to maximize the benefit before the detriments of it kick in, thankfully John is in expert hands for this and we are confident that they will do what is best for him. Thankfully everyone agrees that John should be able to eat and drink what he wants, and then after he is doing better with that we will start a new GT feeding regimen with in mind to get him back off of TPN asap. This is going to be another big step back as he will be back on 24 hour g-tube feeds for a good while again, but this is a manageable issue and one that we have lived with before. Besides, if it gets him off of TPN and is gaining weight and growing again we're all for it and it won't affect his homeschool or therapies, he should quickly even be able to take an hour off to swim once a week after the picc line is gone!

So, that's the plans for the moment. Of course in John's world those plans could change at any moment, but we are very thankful that everyone involved is being quite proactive, all of them see John as a precious and amazing little boy and want to see him grow up!

Oh, the big tigers. Well, Children's Hospital in Columbia is part of the University system and the mascot is a big yellow tiger, the mascot came by today just as John was starting to feel good enough to sit up on his own. He was very impressed that a big tiger came and patted his head and blew kisses to him and gave him a little tiger to hold on to. The look on his face was priceless when the big tiger came around the corner.

We want to thank you again for keeping John in your prayers, and us too. We are having moments when this is scary for us as parents, but we keep reminding ourselves and each other that God's will for John is perfect and of all the miracles that we have seen in John's life, and hold onto Christ's promises for John and for ourselves.

Feed the kid...

...that is the first advice from the GI doc in St. Louis. Yes, we are back in St. Louis Children's Hospital, we came by ambulance yesterday. The doctor's at University in Columbia decided that John needed more expert care than they were able to give and so sent him on to Columbia. John's docs in Columbia are WONDERFUL and one of the things that we have always appreciated about them is that they know when it is time to send him for more expert opinions.

Here John is in the hands of Dr. Rothbaum, we love this man. He is an excellent GI doctor and has taken great care of John in the past. He got in to see John last night and listened to what was going on and his first recommendation was 'if the kid is hungry feed him'. John didn't have his hearing aids in when this discussion happened or I'm sure he would have levitated out of the bed to the food, as he had been asking for food since Tuesday afternoon. As soon as the docs left and I told him that he could eat, he was so excited and he ate a cup or so of cheerios, lol, it was the only thing I had readily available but he didn't care, he sat up on the bench in his hospital room and fed himself cereal until the very last crumb was gone, what a happy looking boy!

Tuesday when the decision came down that the Ileus was real and that he need to not be eating I explained to him that usually his food went in his mouth, down his throat, in his tummy and through his intestines into his diaper but that now his intestines were sick, and so his food was going in his mouth, down his throat, in his tummy and then getting stuck in his intestines and that was what was making him hurt. After I told him this he looked at me, I could see comprehension dawn and then he collapsed into sobbing tears. After that he would ask for food and I would tell him that his intestines were sick and he would look sad but we could move onto a book or toy or some ice without him throwing a fit, or getting upset. I am constantly amazed at the maturity in this child's head and heart.

Even with the sadness of being ill and being in the hospital we had one of the funniest moments with him yesterday. One of the nurses came to sit and talk to him and she was telling him that she had a baby in her tummy, he looked and me for explaination and I signed and told him that she had a baby in her tummy, and he got the biggest eyes and most incredulous look on his face. Today two of the staff came by to visit with him and they too are very apparently pregnant and he kept looking at them and we told him that they too had babies in their tummy's, the look on his face was priceless. I got to thinking about it though and this would be the only largely pregnant women he has seen in a long time, I wonder if he is putting it together in his head that his speech therapist is also pregant, that should be interesting when we get to go back and see her.

So today, he had a good night last night and woke without puking or anything this morning, he ate a few bites of breakfast but not much, played for a while and then we could see that he was going downhill a bit again. He's down for his second nap now, all he wants is ice and he's not looking as good as he did this morning. Doc's orders are to let him eat as much or as little as he wants, put him back on his home routine g-tube feeds and watch to see what happens. The pediatric radiologist here, who has done serveral upper GI with small bowel follow through tests on him says that yeah, his gut is slow, but not horribly worse than it ever has been. So we are watching and waiting to see what happens.

Mark came in last night and is going home tomorrow, then he will be back on Monday for a couple days and then go back home. We still have absolutely no idea whatsoever how long John will be here. While he's here we're bending every ear we can about the nutrition stuff that we've been reading about to deal with bacterial overgrowth and to increase absorption in the gut, we are hoping that while he is here we can address the not gaining weight issue. I'm sure the medical staff will be as glad to see us go home as we will be to do so when the time is right. Meanwhile we are relearning how to live in the hospital, reading lots of books and working on learning more sign language. Depending on how John is doing tomorrow Dad might be updating the blog if John is not up to sitting in the resource room for me to do it.

One more time I want to say thank you to everyone who prays for John and for us, we are blessed beyond measure.

Corn, corn and more corn...

...but mean mommy made him take 3 noodle bites and 3 piggy bites too! Actually John ate the best tonight that he's eaten since we returned from check-ups in St. Louis, we're hoping this is the harbinger of things to come despite his low energy level this evening.

We've been in search of a perfect mac and cheese recipe for a while, smooth, creamy, cheesy, and using real cheese, butter, etc., we finally found one but of course that still didn't make John happy with eating noodles. He didn't protest over these as much as he has over other noodle recipes, so maybe he'll eventually learn to like them, who knows.

Well at the hospital the last time I finally had to pull out the 'h' word. One of the therapist was pretty insistent about knowing where John was going for preschool this year and I finally told her that he would be homeschooled, while I can't say that she was thrilled or impressed, at least she didn't look shocked or offended, I'm sure we'll get that reaction from someone out there some day, lol, I just keep bracing myself for it. I was however really impressed with the reaction of the coordinator for the school. We ran into her at Wally yesterday and let her know that John would only be traveling to therapy once a week this coming fall and she was happy with it and said that she was glad to have the info so that she could get his IEP written up, of course we haven't used the 'h' word with her yet.

Just in case the thought has ever floated through your head that the government would be great at handling the health care in this country and nothing else has persuaded you that this would be an insane proposition, get a hold of this - to get John evaluated for and have 4 vision therapy sessions it would be $820 out of pocket if we go to the Medicaid provider, and $805 if we pay cash up front to the non-Medicaid provider, hmmmmmmm, makes me think. Okay, this is a different kind of therapy than what normally goes on, but he has a load of other therapists and doctors that really think that he might need help relearning what level looks like as his neck strengthens and he's able to look at the world in a new way. Now, we are thankful beyond words to the taxpayers of this state and this country for the health care that has been provided for our son, we certainly wish that we were able to afford the care that he needs without this assistance but still, if you ever think that the government should be in charge of all of health care park yourselves in the shoes of a government health care recipient for a few minutes, you'll see it from a whole new perspective. Well okay, I'll get off my soapbox, lol, for the moment :)

That devilish little grin...

...John woke up early this morning with smiles and is looking and feeling better than he has all week. So far this morning he's helped put his own dirty dishes in the sink, put away the silver ware, fed the dog her snacks, feed the fish, and done his all time favorite chore, throw the laundry basket down the basement steps. Now he's sitting on my desk playing with the phone with that little grin on his face, the one that lets us know that if he were able to be independently mobile nothing in the house would be safe today :)

Time to Play

John was feeling a little better this evening, you can tell from the pics that he's still not up to his normal level of silliness but at least he was ready to play, even if the smiles were few and far between.



One of the things that they ask at the hospital when he's admitted is about his development and one of the questions was does he pretend play. I hadn't really thought about it, but tonight since he was feeling better I thought we try and see how it went. I got out a number of John's bears and he fed them, gave them drinks, hugs, kisses, oh and of course they got phone calls - if you'll look close in his hand you will see he's holding the phone, sister bear had just gotten a call and he was getting it to her. I thought it was funny that his bears also needed medicine, some of them like theirs orally and some in their g-tubes, he filled the syringe back up out of the empty bowl several times to make sure that all were properly medicated, and of course had to listen to them with his stethoscope and look in their mouths with the tongue depressor. I'm looking around to see if we have one of those little pen lights somewhere, I want to see if he'll check their eyes and ears. At any rate he had fun, so did I and next time they ask me if he can pretend I can give them a resounding "Yes!"

While Mark was out in the country parish for the ladies meeting we also had time to make dinner and bake some banana bread. John helped shuck the corn, put the bullion cubes in the pan, salt and pepper the meat and then he had a good time sitting on the counter helping with the banana bread.



He loved turning the mixer on and off, helping to put things in the bowl, breaking the eggs and helping to whip stuff, of course his favorite is always the beater in the end :)

Little boy is in his bed, still talking but doing well, all in all it's been a better day for him and makes us feel hopeful that he is on the upswing of this thing.

Still home...

...for the moment at least, John has had a very rough day, he still doesn't feel good at all but for the moment we are still at home, how long that will last is anyone's guess.

We did get some good news today though. The urologist called, Dr. Austin is the surgeon that we've been waiting on to hear about what, when, etc., we were going to do with John and his hydronephrosis. Dr. Austin says that after reviewing John's records from the beginning that his hydronephrosis isn't really worse, considering that he had a full bladder during the ultrasound and that they should have then cathed him, emptied his bladder and checked it again. He does not see John in an emergency state, and for that we are thankful! He does however think that it is time for John to have another VCUG scan done, which checks on the reflux in his ureters, and if that hasn't improved then it is time to start discussing surgery to do some repair there. So we will be having that scan done and seeing him again soon, and then will have news on what, when, etc., is going to happen with John and surgery.

Despite John feeling awful today he was still signing to us, even working with me on some new signs and was giggling at Lucy chasing a fly in the window this afternoon, every our charming little guy.

VBS Week

Mark and I volunteered to teach the preschool VBS class at his country parish this year so that John could go and be involved. It's been fun, John has enjoyed getting to be around the other kids, and it's been pretty interesting to see what other 3's are like. All in all the concept that he is most behind in is understanding the function of a line, poor kid, we'd make him line up more at home but really the dogs don't get it either :)



Anyway he's been having a good time, the other kids are learning a bit of sign language as we go along and John is getting less shy each day so there is no telling what Friday will hold. The older girls, the 5's like to help him, and the older boys, well they are into his favorite game, run up and down the handicap ramp!

Lay off the broccoli...

...but how about the dog snacks? John's been dealing with a lot of gas issues lately, his pediatrician assured us that adult diets create adult issues and that little guys with no stomach muscles can't handle gassy food, his advice, tell the kid to lay off the broccoli! Well okay, but what about the dog snacks? Tonight he gave Maggie her piece of jerky treat and then took a big old bite out of the next piece and handed the remainder to Lucy. He sat there and smiled while he chewed the dog jerky, Mark laughed and told me it's a boy thing, okay, but if the kid has barking problems he gets to explain it to the pediatrician this time :)

It Must Be Brushed!

In our house John is very insistent, your teeth and your hair must be brushed, no matter how short that hair is!

New Haircuts!

John and I both got new haircuts this past week so we thought we would share. John is doing GREAT, he is getting stronger and faster every day, believe me the dogs are scared. His new trick this last week was feeding himself with one hand. John has fed himself cocoa puffs and cheerios and a variety of other things for a good long time, but he mostly has put them to his mouth with his left hand and then used his right to help get them in. Well the other day at his IEP meeting we were talking about he just didn't seem able to eat one handed, he was obviously listening and decided that we should know what he was capable of as that night at dinner he started feeding himself one handed like he had been doing it forever. He amazes me at how determined he is to prove that he is a big boy despite his tiny stature.

John's IEP, individual education plan, went great, beyond great it was perfect. This is the plan written between the parents and the school district regarding special needs kids and what they will be provided with. It can be a rather intimidating process and we have heard horror stories about school districts that are just bears to deal with. Not ours, our school district not only set out to make sure that John is getting all of the therapy that he needs but went further and wrote in his plan that his overall diagnosis that most affects his education is systemic ataxia, unsteady muscle movements. They did this to make sure that everyone who sees this kid knows that he's very smart and will push him to excel and overcome what limits his body has. We were thrilled! So often people see John and just see the cute and the disabilities and the people that did John's IEP saw the abilities and the potential and the amazing little boy that we know, and the cute too of course, but we are most thankful that they saw that our little guy is a big smart boy in his head, even if his body holds him back some.

So we've met John's new physical therapist, his new occupational therapist is even taking a continuing ed class on eye/hand coordination, an issue that John has particular problems with, he will continue to see the same speech therapist and still have pool physical therapy with Mr. Paul. He will also start going to the preschool at the MOOG school this next year, he will get to spend an hour each day we are there in the classroom during their music and social time. That will be cool as John only gets to see other kids when we visit family, occasionally go to the country church or passing by us in hospital or mall.

Before I go I have to tell you another of John's latest coolest new skills. Mr. Paul has been trying to teach John 'daka' for a while, hold your hand up in a classic Fonzi pose and say 'daka' and you got it. Well John not only can hold his hand that way now, but has even said 'daka' a few times. I knew the kid would speak Chinese first, I just knew it.

A Long, and Long Awaited Update

Phew, sorry it took so long to get back to this. Finally a phone call from my cousin reminded me that there was something that I had been forgetting to do, thanks Susie!

Let's start with a picture...



This is John opening his Easter present from one of the kids that is on one of the Ebay boards that I'm on. The kids, mommies, did a swap so we sent presents to a little boy on the east coast and got this cool box in exchange. John loved it. Even today he had the carrot madly waving it at the dogs babbling something, I'm sure it was some kind of incantation to make them stand still until he could run them down.

This update has taken so long, not because John has been sick or in the hospital, quite the opposite, John has now made all of February, March and April with no hospitalizations, this is a record for him. Actually right now is the longest he has been out of the hospital for the entirety of his life and you can tell just by looking at him that he's feeling great and doing awesome.

Holy week normally finds us in the Hospital, this year we not only were home for Holy Week but in church for most of it. Papa came to see us the next week and oh what a time we had. It's always great to get to visit with Mark's dad this time John especially loved it and even stood by the door and cried when Papa had to go home. Every so often he still tells us that he's calling Papa on the phone and is always glad to hear his voice when he's really on the other end. Sure is cool to see him start to remember those who love him so dearly.

Amy, John's speech therapist tested John earlier last month to see where he was with his receptive and expressive communication skills. Remember John has only been hearing for a little over a year and prior to that as far as anyone could tell John never heard speech before. We were delighted, albeit not really suprised, that John is very close to age level for receptive language, meaning the little silly can really understand everything we say. Expressive communication is much harder for him, he is way, way behind, like at 12 months until you start looking at sign language and then he is catching up. Amy expects that John's receptive language skills will go off the chart and that his expressive using sign will match it soon, but that the verbal communication is going to take a good long time to get there. She thinks that we should never say never, we agree, but that most likely if John is going to be a verbal communicator that it will happen by the time he is 6 or 7. Of course the time after we had this conversation he showed that he was listening to us very well and showed us that he could immitate lip movements and sounds better than he had ever done before. He still struggles with this but somehow he seems to be trying harder lately and that is a vast improvement.

Time for more pictures...



John loves modeling for the little sets that I make and this time even daddy got in on the act at the very end. John is always excited to see a new shirt on the mannequin and tries to rip his off so that he can go and do pictures. Of course pictures used to be easier before he got to be more mobile, now he can do things like try to run his little push bike into the footlights, but even that is just too funny to pass up.

The last set that I did is the very first time that John was able to stand long enough for pictures without Mark supporting him.



He was so proud of himself and actually turned himself around in the gait trainer a couple times before we were done. He has gotten so much stronger. He even has asked, on a couple of occasions, to have the seat removed from the trainer so that he could walk without it. The last time was when we took him for a walk last week and he actually walked a good half block or so with no seat for support. He was very proud of himself and so are we.

Of course with more mobility comes more bruises, but they are nice normal 3 year old bruises so we are happy with those too.



This pic was pre-bruise, but if you check out the knee on the off side of the bike you'll see that it is near the ground. Once he got it there he decided that he was a big enough boy to turn himself around on the bike without help. Earlier he slid off the bike onto the floor without help and did great so we watched to see what he could do. Plop, right off the bike, fast first into the concrete. A big ouchy bruise on the forehead and a nice bloody nose to go with it. Poor kid. It did prove that his clotting factors are much better though because that bloody nose stopped on it's own before we could even get him upstairs and do more than wipe it off. The nose isn't broken and the bruise is fading, but he's still excited and ready to get on that bike.

We took John to St. Louis for checkups Friday and he did great. He is now officially 34 inches long, his head is growing and poor thing he's gaining no weight whatsoever so we're taking him to the pediatrician again in a week or so for another weight just to keep an eye on him. John changed from baby formula to junior formula a couple months ago and a couple weeks ago had finally progressed to where he was getting 1000 calories a night from the formula. Of couse that meant he totally quit eating, oh he might eat a bite of chocolate or ice cream here or there but other than that forget about it. We talked to his GI nurse and we all decided that he needed to eat, so cut his calories in half and viola guess who's hungry. John is now eating like crazy, he loves pork and is so wild about it that the other night he kept reaching over and stabbing the pork steak with his fork while we were trying to cut it up. He has also developed quite a taste for fruit and loves beans. Tonight he even managed to eat a few noodles, he doesn't normally like noodles, and ate his grilled chicken after we told him that it was pork chicken, he smiled signed pork chicken and proceeded to eat what before would not be touched because it wasn't pork. You would think that the kid watches a bunch of Emeril but really he doesn't.

One last picture for the night...



So even though the update has taken a long time to get here, the boy is doing great, he's signing to us all the time, chasing the dogs, reaching out for stuff and even falling off his bike, but all in all he's just amazing us every day!

Runnoft, Rabies, Hotlines...

...surely there is some explanation for this, some help for this. What you ask, well, check the time of this post. A long time ago, pre-John, even early John, this was a normal hour at our house, those days have long past. Or so we thought, evidently. John is jabbering happily running around the house in his gait trainer, he hasn't asked for shoes, or even ears, just to run, run, run, and now to take over and type on the computer. So at what age do you just let the munchkin have free reign of the house and go back to bed?

Still home...

...thank goodness!!!

John's rough day yesterday won him a night of ceralyte and this morning he was looking better :)

He's still kinda tired but doing oh so much better, enough so that he got to go for a walk this evening and made it farther up the big hill than ever before. He even ate a bit through the day too!

The funniest thing of the day was when I was rearranging some stuff in the area where we take pics and John was sitting on the footstool trying to get his shirt off, desperately looking for the new one, silly boy. After all we were in the picture taking place so of course it must be time for him to ham it up in a new shirt.

Tomorrow is his 6 month dentist check-up, but his therapists are still on spring break so we're looking forward to a rather leisurely trip to Columbia and back, hopefully in time to get lots done at home and let a little silly man make his nightly jaunt through the neighborhood, on dog, of course!

Spring Break!

So far spring break has been rather, um, non-breakish! A dear lady we love from church had a heart attack during routine surgery and is still in critical condition, although more hopeful every passing hour. John has been fighting something, allergies, cold, not sure, but today it looks like it might be winning the battle. Of course getting his RSV shot yesterday didn't help much, sigh, I don't know if we will get to church tonight or be posting our next update from the hospital. Several hours ago, if I were a betting person, and I'm not, I would have said hospital, now, well, not so sure, but we'll see.

As you can tell yesterday he was looking pretty spiffy...



This is his new outfit that's currently up for auction. He loves it, actually, he loves any new outfit, especially any new shirt, we might be creating a monster here, but a cute one!

We have enjoyed a walk down to the park this week, John isn't as enamored with swings as he was last summer, but I don't think it will take too many trips for him to love them again. Tonight is our last Lenten mid-week service and I'm sure he'll be thrilled because tonight daddy is preaching, as opposed to preaching elsewhere and us having a guest pastor. We're serving dinner tonight, so the house smells of meatloaf, fresh bread and warm apple butter, the windows are open and the birds are singing, all evidence of spring being here wethere it was really a break or not remains to be seen.

I'll wait for you...

...but I'll have to do something cute while I'm doing it!



Poor John, he needed to wait on the couch for just a few minutes while we got stuff ready for the bedtime routine around here and well, I just don't think he can help but be cute! He did this to himself, I'm sure it is a commentary of some kind, but as of yet I haven't figured it out.

Real hugs!

We finally have real hugs! And they are wonderful!!!!

John has never really given hugs, he figured out kisses a while ago, but somehow hugs were escaping him. He has been hugging his stuffed animals, but those he can wrap his arms around, so the concept of hugging someone that you can't wrap your arms all the way around was baffling him. Well night before last I was holding him and Mark came over and wrapped his arms around both of us and said 'hug' and John thought this was hilarious so we did it several times and then Mark held John and I hugged them both and voila the real hug was realized. Last night I was carrying John in to bed I gave him a hug and he gave me one back, and then another and another and then it was daddy's turn. Real hugs, what a wonderful thing!

Talking to myself

Well not me, actually, although I do that, but John now talks to himself. I noticed this last night as he was sitting in front of his bookcase with his mountain of stuff around him. His cup was sitting on a shelf, and whenever he decided that he wanted a drink he would sign 'drink' and then take his cup down, get a drink and put it back on the shelf. I watched for a while, thinking surely I must be seeing things, and yep, next time he wanted a drink there was that sign for 'drink' again before he would take it off the shelf. I asked his speech therapist about this today, wondering if this was a good sign or not, ever the paranoid mommy, and yep, she thought it was fantastic, a great show of comprehension that he's getting it! Woo hoo, so evidently talking to yourself, or signing to yourself in John's case is a good thing!

John has had a great day! Beyond great really, another sure sign that he is growing up and getting stronger. He modeled a new set this morning



Oops, I forgot to show you the last one



Anyway, after that we loaded him up to go to speech therapy. Today's the day that I take him and daddy stays home, well normally. Today, however, Mark was doing a funeral for the neighboring pastor who is gone on vacation, so we left the house and rushed Mark to Marshall for that and then John and I headed to Columbia. We were going early to meet the lady that bought a custom jacket from me at the auction for the Moog school last year, so of course I was worried that this much morning activity was going to poop John out completely. Ah, he's growing up!

Normally when we get to the school he gets excited and 'dances' in his car seat as we pull into the driveway. Today he perked up and got excited when we turned off the main road, onto the side street that we follow for a mile or so and then once we got to the next turn, still not where you could see the school, he started 'dancing' and squealing. I would like to describe this better but really, he looks as if he is trying to dance in his car seat, what with arms and legs waving around, he's got the biggest smile ever on his face and he's non-stop squealing with excitement. It's really hilarious and today I was treated to it on several occasions.

At school I talked to the lady about the jacket and John got to do his normal circuit around the gym 3 times. Well, okay it wasn't his normal circuit, normally he would come in the gym, race across it, down the hall, take a left, down that hallway, through the conference room (unoccupied always, thank goodness), and back into the gym and then he wants to turn and do it again. Well not today. Today once he came through the conference room the first time he headed back up to where the school is. This school is housed in the basement level of a very large church in Columbia, and it has two, one short and one long, wheel chair ramps between the gym and the school area. Well he went right up both ramps completely alone - the first time that I've ever seen him do this. Usually I have to walk behind him to keep him from turning or going backwards. Not today! At the top I turned him around to go back to the gym and so he did this same circuit 3 times total - it was amazing. The last time he needed a teeny tiny bit of help up the long ramp, much less even than the last time that I saw him go up on Friday. Evidently those walks around the neighborhood are working.

During his therapy session he did pretty well. He paid attention and did what was asked of him for the most part and when Amy was telling him which parts of Mr. Potato head that she wanted using sign only, he was fast and accurate!! At the last of it he was being Mr. Stubborn, I don't know where he gets it ;) He was fine getting back in the Jeep, once I told him we were going for lunch and that I knew where they had some ice cream.

He danced and squealed for me again, not pulling into Culver's like normal, but on the road where you can first see it, a couple traffic lights away from it, I was amazed. Just me and John for lunch is not the easiest thing in the world as he misses daddy, and so do I. But we managed pretty well and he even ate, well once he realized that I was serious about the ice cream and he wasn't getting any until he ate his french fries. Then he started porking them down. When the ice cream came he was so excited and was satisfied with me feeding him a bite, for every one of my bites for a while, but then he needed the spoon. Little silly then 'fed' himself ice cream to the very end!

The ride back to get Mark wasn't bad either. John will normally nap off and on, or fuss because he wants out. Not today! Today he rode home with a Culver's cup of ice in his lap that he fed himself all the way to town. He did great holding it right up until we pulled up beside our favorite Chinese place. I thought we could sneak by it, as we normally approach it from the front, but nope, we stopped and he was dancing, squealing and signing 'eat' in the back seat. He had taken his hearing aids out long ago, and nicely gave them to me instead of pitching them, so I signed to him that we were going to get daddy, and well that was okay, but he'd much rather go in and eat.

Needless to say, John was exhausted and ready for a nap when we got home. We got him up for church this evening though and he did pretty well. He play a bit in the pew, and really liked it that his sock feet were slippery and he could slide around on the floor, but well, at least he was quiet while he was doing it. The one time he really decided to chatter was when the Pastor said 'we'll speak the Psalm together' and John just started yap, yap, yap, yap, yap, I have no clue if he understood and was trying to participate or if it was just time to yap, at any rate he shut up when everyone else did.

After the service everyone came by to congratulate him on being so good, he was too tired to care though and gave a few of them 'five' but was mostly interested in coming home. He did great on the walk home, all the way up to the last corner before our house, that's where I had to go back to retrieve his sock!

Blowing Feathers

I think the old saying goes something like "you could have knocked me over with a feather." Well around here the feathers are the ones getting knocked over, particularly a bright blue one that we brought home from speech therapy on Wednesday. It's a long story, let me start at the beginning...

...Monday, John went to see the Developmental Pediatrician. During this visit he was seen and evaluated by a speech therapist and an occupational therapist, not his normal ones, and they each had suggestions of more and different things to do to help John. The speech therapist told us that she felt that John's dyspraxia was not only affecting his mouth, but that to her, he seemed to also have a problem with phonation (speaking) because he didn't seem to be able to control his breathing. Not that he has a breathing problem, but can't make himself exhale or inhale on demand. This would go along with the other quirky things that John can't make happen yet, like he can't close his eyes if you ask him too and it took him days to learn to stick out his tongue when asked. Anyway, the therapist suggested that we get him to blow on things and made lots of suggestions including what is supposed to be the coolest bubble blower in the world, sold at Gymboree of all places, hmmmmmm, a reason to go and let John wander the mall!

...The rest of the appointment was quite productive, the OT had several suggestions as well, and the pediatrician herself checked John's legs because he seems to have one that's a bit longer than the other and might need a lift in one of his orthotics. She also suggested that John begin going to the Cerebral Palsy clinic and set up his first appointment. CP is one of those things that scares me, but John's PT assures us that he knows adults with CP who have graduated from college and married voluptuous blondes, while this doesn't necessarily ease all the worry I suppose it does some. At any rate, there is no formal or really even suggested diagnosis of CP, but that is the clinic where they would best be able to keep track of John's spine and hips to make sure that they don't rotate or move out of line. John has weak muscle tone, always has, and this is the clinic to watch it in, and I suppose that I'll leave my fear in the parking lot and do just fine.

...Oh the feather, well anyway, John and I went to speech alone on Wednesday. This was rather an interesting ride, the first ever that John has made that long with just me that he kept his hearing aids in and actually the first in a long time period that he kept them in. We talked all the way in, and he showed me the signs for the trees that we passed, and the bird (hawk, actually) that was sitting on the big post and the trucks that were on the highway, this was all rather entertaining and fortunately not distracting enough that I wrecked the Jeep. At speech John was pretty good, although he seems to have a problem picking a picture out of a book, while he has much less of a problem picking up a 3-D object in the same situation, we're working on this. Near the end of speech, Amy, suggested that we have John work on blowing a feather off our hands because that takes very little effort and would bring the quickest success for him. He tried to blow the bright blue feather off her hand and was able to move the little wispy hairs on it a bit, enough that we could see he was working on it, but that was as far as he got, so we took the feather home to practice.

...Yesterday he was able to blow on it a little more and this afternoon Mark was giving it a try and the very first time John blew it right off his hand and then was able to do it again each time after that. The other cool things for the day were that John was able to finish a whole juice box using the straw, as opposed to squeezing the box and squirting the apple juice in his mouth and other places, or pulling the straw out, throwing it on the floor and then tipping the box up and squirting the apple juice out of the hole. I'm not a big fan of juice boxes but the little straws really work on the mouth muscles and besides the Motts for Tots Apple Juice is at least diluted down and not straight sugar, besides he only gets one.

Also we worked on his pointing at pictures in books, this was good and well typical. We started with "The Best Mouse Cookie" and I had John point to the mouse on each page, he did pretty well, other than when he was distracted and looking at the dog. Then we went onto "Where's Spot?" and here he showed me that it may be a little more behavioral than we were thinking. At first he wouldn't point to the dog, hello there is a dog on every page in this book, and she's big! Anyway, then I refused to either read the page, or let him turn the page until he pointed to the dog, this resulted in the dog getting pointed to on every page with little or no difficulty and on the last couple pages he first 'poked' the dog and then looked for Spot. Silly boy. With "Barnyard Dance" he did pretty well with finding the cow all the way through the book, the second time through when we were looking for the pig he found it some of the time but was also showing me the sign for 'duck' and 'dog' and pointing to them too, and of course by the time we tried looking for the sheep it was a lost cause, but hey he was doing much better.

Each day we work on John's signs, verbs, nouns, with flash cards, with books, with questions and without. It happens at every meal, and most of the time in between. I've finally resolved myself that we are not going to homeschool in the future, we're already doing it now, and hey it's a lot easier and less painful that I thought it could be and well a good bit of the time it's really even fun and all of the time John is learning one more thing, so we must not be too horrible at it either. It's nice to have a day of successes, tomorrow we have more speech therapy and pool therapy and who knows what new things we'll learn.

Nearly Naked

John's day on Friday was pretty darn good. He did well at speech therapy, even paid attention for the first 3/4 of the hour, silly boy, the last 15 minutes he was so totally on his own agenda. He was able to do well with the new verbs that he is learning though and also got into his gait trainer unassisted again, this is always impressive to see.

Swimming pool time was hilarious. John figured out how to squeeze the little water toy and squirt water at himself and Mr. Paul, he also figured out how to hold the toy in the water and fill it back up - smart cookie this one. John has now decided that he wants to be on his own, floating on his back, and also that he likes to go under so about half way through his session we took off his little padded swimsuit/floatie device. He wasn't so sure about getting back it the water in just his swim diaper, and was definitely out of his comfort zone for a little while, but once he was strapped in a little floaty thingy he was happy to be on his own again and was even good with going under at the very end. So no more suit/floaty for John and he gets to graduate to little swim trunks.

Today has been okay, we increased his formula concentration last night again, this puts him at 80% of the new formula, and so he's had kind of a not so great day but he's doing well enough that he's sleeping in his own bed and not riding to the hospital. He did play with his books this evening and made one heck of a mess in the living room, we didn't know he could reach so many things. He also figured out how to pull things off the end table and as you can well imagine the dogs were sure to stay clear of those little hands!