Monday, May 29, 2006

You can't hold your donut and clap at the same time

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John's day has been adventurous but all at home for this memorial day. John woke up early this morning puking and having some tummy trouble. The episode passed quickly and there wasn't a great volume of output, but he was reluctant to go back to sleep in his own bed. He got to sleep in the middle for a little bit, not that mom or dad got much sleep. When we were all ready to go this morning John immediately wanted to get into the gait trainer. He stayed in it until breakfast was ready, sat in his chair and ate well for us, and wanted to go back into it. He stayed in His gait trainer until he was ready to go down for his nap. After His nap he wanted to play with dad and much fun was had by all. For dinner John had applesauce while mom and dad ate something too spicy for him.

Dinner time was the big fun for the day. John will eat for us, but on his own terms and conditions. He will only take a bite from one of us if we are both holding his hands. This is a case of reaping what you sow. John has gotten active enough that when he doesn't want to take a bite he will grab, bat, and push the hand, spoon or fork until the bite is lost or the parent gives up. To which we responded by holding his hands and he would then take a bite. Now he laughs and holds out his hands whenever we want him to take a bite.

He ate well for us. After dinner we had some donuts that were leftover from church yesterday and we put the donut on the tray for him and he picked it up, tore it apart, and fed a good portion of it to himself. Whenever he would feed himslf he would smile real big and try to clap for himself, but found that he couldn't for the handful of donut that he wouldn't let go of. He has also gotten into the habit of playing with his hair lately, so now whenever he makes a mess while eating it has become more extensive.

This evening has been a little interesting. He went to bed fussy and had some trouble going to sleep. He has woken up twice already. Once because he was hungry and needed a bite before going to sleep. The second time because he needed to be changed. He wanted to stay up the last time, asked for his ears, and reached for some books on his shelf. Of course he was put back to bed. He hollered for maybe a minute and then went back to sleep. Hopefully he will stay that way, though there are noises coming from his room that indicate otherwise.

Saturday, May 27, 2006

Let your yes be 'yeah'

The past couple of days have been rather busy for John's mom and dad, but they have gone very well for John. It was an easy day Thursday for John with no appointments or therapy sessions, but it was by no means uneventful. John spent most of the morning in his gait trainer and is beginning to get around pretty well, especially backwards. He has the habit now of backing himself up as close as he can get to mom or dad and patting us on the leg, whenever we are working at one of the kitchen counters he gets behind us, it appears he wants to keep us from going anywhere. He also spent a good amount of time on his ride on airplane. He has gotten an understanding of how to make it go, but still isn't bold enough to really do much more than tap the peddle that makes it go. Thank goodness. Thursday was also Ascension Day and I (Mark) had the opportunity to preach that evening at our sister congregation in Marshall and all of us went. John sat in the front with mom and I got to sit with them for most of the service. John had a very good time and got to see a whole lot of new faces, people who had been praying for him for a long time and were glad to finally meet him.

Friday was a big adventure as we went down to Columbia and got to meet a very special lady named Lynne who made casts of John's feet and legs to fit him with his new AFO's - braces to help his feet stay in the correct position so that he can walk better and faster, etc. - watch out dogs! Twice on Friday John treated us to a 'yeah'. Both times he had his hearing aids out and we were holding them asking him if he wanted them back in and each time he looked us straight in the face and said 'yeah.' We were pretty impressed. After we got home from Columbia on Friday he spent a good part of the afternoon playing in his gait trainer. He's now gotten to where he can pretty much go where he wants, at least on the linoleum, and the dogs are giving him a wide berth. You can see the relief on their faces when he goes down for a nap or to bed at night.

Today has been delightful. He woke up with smiles and was ready to play. He can now pull spices off the spice shelf, open drawers and cabinets, although he can't get things out yet because of the way the gait trainer is made, but you should see him make a bee-line for an open dishwasher. We have to quickly pull out the sharp knives and such because before you can do much other he is there pulling things out of the utensil basket and banging them on things. Lately we've been having him show us where he wants his hearing aids. Of course you can see the budding sarcasm when he sticks his finger in his ear but tonight his left hand was full of the all-important-table-knife, which he was most definitely not putting down, and so when I asked him where he wanted me to put his left hearing aid he looked at me for a second and then reached around with his right hand and stuck that finger in his ear. There is always something to celebrate.

John didn't eat as well today as we would have liked, but he did eat some and so that is a comforting sign. He enjoyed playing with his books and toys before bed and now every time we count anything he has to tickle, tickle, tickle himself. It is too cute. He likes itsy bitsy spider, but mostly just likes to make the spider with his fingers and let us do all the rest. During prayers he's now decided that folding his little hands is good once in a while, but about half way through has decided that we all need to hold hands like we do at meal prayers. He is so cute when he is sitting there demanding your hand so that we can go on with prayers.

Wednesday, May 24, 2006

Appointments and accomplishments

Yesterday we went to St. Louis for an appointment with John's GI Nurse Practitioner, Sandy, She was impressed with the progress he has made and the increase in both his weight and ability, He is now officially 21 pounds. She wants us to keep doing what we are doing both feeding and medicine wise, and she is going to start networking with some other specialties about the constipation issues. Children with Short Bowel Syndrome almost never have constipation without there being obstruction problems, but with the Prune Belly Syndrome and the lack of stomach muscles to push things through John simply doesn't have the umph to keep things going when the poops get too thick. So Sandy is going to do some research and make some cross discipline connections to see if she can come up with a plan for John.

John's appointment took all of a half hour, but there was also a number of good friends to see from all the time he has spent in their care. After getting some blood drawn at the lab, no fun for him, we went up to see our favorite nurses and PCAs on the eighth floor. We got to see a few who were there that day and they were surprised to see how big John had gotten. It had been so long since he was there, over 2 months from the last appointment, that it took a good 15 minutes for him to warm up to them and start visiting. As we were getting ready to go off the floor he even let one of the nurses hold him, but he still kept his eyes on mommy to make sure she didn't go anywhere.

We also saw John's social worker from there, Sharon, and it was wonderful for both John and us. Sharon has become a great friend to us, and even though we no longer need her professional care as much as before, we enjoy spending time with her and have developed a great personal relationship. We also ran into one of the transport nurses, Donna, who has been there for John at some of his most critical times. This was the first time she got to see John doing as well as he is. She was so happy to see him and us and had some very strong words of encouragement for us and asked to see us when we came in the next time. The PT from John's hospitalizations, Christine, had e-mailed after reading this blog asking us to come up so that she could see John. We met her for a few minutes and she was so happy to see John doing as well as he is. She wants us to bring him in his gait trainer next time.

After visiting around the hospital we went out to eat with our dear friend Jodi, she has been John's Patient Care Assistant (PCA) for many of his hospital stays and she has become a very close friend. We spent hours visiting and had a great time with the silliest little boy imaginable. He charmed her out of chips, ate some of her brownie, and generally hammed it up that he attracted the attention of people at other tables.

On the way home we stopped at McDonald's to try out John's first happy meal. He ate about a third of the fries and burger, but had trouble keeping it down and gave back what he ate as well as quite a bit extra. After the long ride home we brought him in, cleaned him up, said prayers and put him to bed.

This morning he woke up early and had a good time pinching mom's nose and stealing dad's glasses. He did very well playing throughout the morning and ate breakfast well for us also. His PT, Shawna, came earlier than usual this afternoon so mom had to keep John especially occupied so that he would stay awake. Shawna was very pleased with his progress in the gait trainer, and she also adjusted it to increase the height so he'll stand up more. She will be seeing us again on Friday when we get John fitted for some special orthotics, AFOs, that will help John straighten his legs to walk. After she left it was time for John to finally get his nap. He slept for a good while and woke up happy and wanting his ears.

He had his moments this afternoon when he wanted his mom's complete attention, and because she was also doing other things he decided that his hearing aids needed to go in his little cloth toy box. This got him some crib time, but not for long as we went to the church in town this evening to do some preparations for next month's worship services. He was an entertaining distraction and was very happy to have the attention. When we headed home he was getting very sleepy and silly and so we got him ready for bed as soon as we came inside and said prayers sang a hymn and put him to bed. He is now sleeping deeply, and we are looking forward to having nothing extra happening tomorrow.

Monday, May 22, 2006

Surprises and attitude

This morning John woke up wanting his diaper off and his ears in. He was very happy and lively as we got breakfast ready and got everything in order to go to school. He did surprisingly well with his ears through the morning, not trying to take them out or intentionally causing feedback by placing his head against something.

After taking care of breakfast, where John did not eat much at all, we got on the road to Moog and had a wonderful trip almost the entire way down. We stopped on the way for gas and we got him a donut to see if he would eat something and maybe help with the constipation issues. He ate just a few bites and then slept most of the way to school. When we were pulling off the interstate John started puking. He puked a pretty large volume but it was mostly the ceralyte that we were pumping into him at the time. We arrived at school with enough time to clean him up and change his clothes, but it is surprising how happy he was when we turned into the school parking area and he knew we had arrived. As mom and dad were getting him out and cleaning him up mom says that he said, 'oh God'.

When we had gotten settled in for speech therapy John was a little wiped out from the puking, but he was ready to go to work . At the same time though he was definitely showing his attitude doing things his own way and even though he knew exactly what he was supposed to do his teacher had to repeat herself far more often today than on previous school days. But of course he was so cute the whole time he was being stubborn, so it was hard not to laugh. Over all he did do what was expected of him and had a good day at school in spite of the puking and the attitude.

He did well on the trip home, but the respite from ear pulling was over. We weren't ten minutes from school and he was handing us his ears. He slept most of the way home and after we had gotten him some lunch, which he ate pretty well, went down for a good long nap. He woke up happy and wanting his ears immediately. We played for a few hours with toys and read books until it was bedtime. As we sang a hymn he played peek-a-boo with a piece of today's junk mail. While we said prayers he alternately folded his hands or tried to hold ours. He was ready for bed and went to sleep without a peep.

We have an early start tomorrow as we are going to St. Louis for a GI appointment. And since it's also John's mommies birthday we will be looking to do something special.

Saturday, May 20, 2006

A good day - on the whole

This morning John woke up happy and stayed that way, at least until it was time to go to bed this evening. He has done some pretty impressive work that has us happy and looking forward to his GI appointment on Tuesday. We were given instructions that when John started looking like his stool was getting too thick to give him some help with a suppository. He needed one after he woke up because of what we saw, and he didn't fuss much about it. Actually mom and dad have more trouble with it than he does.
All went well until about an hour after breakfast when he started puking. He gave us back all that he had for breakfast and then some. But after getting cleaned up having a little tummy rest and a little nap he was ready to go. We took him around the block in his gait trainer and he helped move himself pretty well most of the way. When we were on the street behind our house we looked back to see what looked like a straight line of brown paste in the middle of the road. We looked down at John's shoes and saw what you guess we saw. Apparently the help we gave him really worked.
After nap time and lunch we had some good playtime with a game called UNO Attack that uses a card spitting machine as part of the game. John enjoyed repeatedly pressing the button that would sound a bell every time but would spit out multiple cards randomly. Then John watched TV with dad while mom worked on Sunday service bulletins. All in all he was very happy playing with books and dad's nose, eyes, ears, and hair, until he was ready for bed then nothing would make him happy until we had changed into pj's said prayers sang a hymn and went to bed. He is now sleeping soundly and peacefully. What a sweetie pie.

Friday, May 19, 2006

Anything for a laugh!

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John's day was great, it was better than great, John's day was awesome - and so of course then was ours!

John woke up this morning with chatter and smiles. We had to take him to get his labs checked and he 'talked' all the way to Marshall. On the way home he had a great time eating egg from McDonalds and chatting up a storm.

We got home just in time for Miss Desiree, John's OT to be here. She had new things for him to play with and new things for him to do and he loved it. She helped him into a crawling type position, on his hands and knees, and he was able to stay there for a few seconds at a time on his own. This is a big deal for John, his arms have never been strong enough to do that before. She brought a See-n-Say for him to play with and he loved it. He was all smiles the entire time that she was here, even though she really made him work hard.

After she left we got his lab numbers. The CO2 that had been down to 14 is now up to 27, that's good, that's darn good! And you can see it in John's face, his actions and his attitude. When his electrolyte numbers are off he's cranky, easily offended, and tired but on days like today when his numbers are good he is full of mischief and smiles.

We did find out one very important thing today. No matter how much Maggie, the little black evilness of a dog, likes John throwing food on the floor, or better yet handing it to her, she does not appreciate having a glass of milk kicked over on her, and she will not lick up the milk no matter what you do. She is just offended, go figure.

This afternoon John came down to the basement with us to watch a little tv and cool down, it was hot here today, he enjoyed playing with books and then his silliness got the best of him and he started sprinkling himself with water from his sippy cup and giggling. I'm not sure if the water was funny, or the repeated efforts to sprinkle his own head and konking himself in the head with the sippy cup was the deal, but at any rate there were lots of giggles, both from John and us.

He finished the evening with scrambled eggs for supper, the milk incident, and then pulling his ears out during prayers, and asking to have them back in. When he finally got to bed he was ready to be there and is now sleeping peacefully. The dog however is still offended!

Wednesday, May 17, 2006

Puking, pooping and yuck!

Our day started out at 5am (obscenely early) with the sound of John puking. We got him all cleaned up and back into bed and again at 9am (not obscenely early but still earlyish) we went through the same thing again. Poor little guy. Dad was gone to be with a parishioner having a procedure at the hospital and it was just me and John hanging out hoping that he would feel better. So through the day we mostly had pooping, puking and cleaning up and then John would be ready to go back to sleep. Needless to say he ate nothing but was still glad and had smiles for dad when he came home. We took him to the lab to find out how bad his numbers were and they aren't good, but at least we are still home. So for the night we are watching him and making sure that he doesn't look any worse. His CO2 was down to 14 and so we are making some med adjustments and hanging on until we hear different from his GI team tomorrow or his numbers come up when we do labs again on Friday. So I guess the title of this update could have been 'holding our breath' but that will probably be tomorrow's.

Tuesday, May 16, 2006

Another interesting day

John woke up this morning with his belly a little large and a very upbeat attitude. He spent the early part of this morning in his gait trainer and tried his best to be right under our feet as we were getting things ready for breakfast. After we had moved him to his chair for breakfast he was not very interested in anything that we tried to feed him, and became less interested in anything at all. He would not give us any indication of what he wanted and then in frustration pulled on the tubes to his hearing aids until the molds popped out of his ears. We have been getting a little lenient of late about this so we decided today would be the best time to bring this back in line. We took him and put him in his crib and set the timer for 15 minutes.
After coming back out in a somewhat happier mood John went downstairs to dads study and spent some time in the exersaucer next to dad's desk with some toys. This lasted for a good while and John was entertaining and was happy as long as he had dad's attention, but when there was work to be done, and John grew bored of the toys in the box he decided to add his hearing aids to the toys. At this point he came back upstairs and back to his crib. After a further 15 minutes of downtime mom picked him up and had to change his clothes from another bottom explosion. This time he was not too thrilled with anything. After he refused his hearing aids, mom put him on the floor to sit and play with his toys from his toy boxes, but instead he chose to throw a typical 2 fit.
There were several more displays of attitude today, more hearing aid pulling that got him put in his crib, he even showed his attitude to his PT. Usually when she comes it is fun time, especially when they go outside. Mom and Shawna led him in his gait trainer to the driveway, and from there he cooperated beautifully until he got to the corner and then he would go no farther. He would go backwards and sideways but no farther down the street. All in all Shawna was pleased with his physical progress. It wasn't until this evening that John the good little boy we all love showed up and was happy to play and interact. He did not really eat anything today, and his belly is not doing as well as we hoped, but he has gotten more of the more solid stuff out of his system so that we are hoping that he has a better day tomorrow.

Monday, May 15, 2006

Happy Mother's Day!

Hope everyone's Mother's Day was great! Ours was fun, interesting and enjoyable, despite the tears that were shed now and then because of missing getting to celebrate another holiday with Mark's mom.

John had a great time at church and behaved quite well right up until the benediction and then he was done with all dad's turning around and looking at him, but not taking him. John cried and pointed at daddy until he came and sat next too us and put John in his lap for the last hymn. Then all was peaceful. He had a really good time after the service enjoying a bit of cake with the ladies and then was ready to come home and get a short nap in before daddy got home.

After the nappins was over he was ready to play and had eat, eat, eat. Despite his full belly and trying to resolve some intestinal issues he did well, but tired out pretty early and went to bed early. But of course that wasn't the end of the day as he was ready to play again later and then sat up with us watching Narnia until 11p. Our little gigglebox had the tired sillies and was clapping for something, we don't know what, and then he would giggle some more. Whatever the joke was it must have been good because this went on for a while. Finally back to bed for a good night sleep before school this morning.

Before school this morning John was ready to be up and playing and so we put him in his gait trainer while we were getting things ready to go.

He pushed himself from the kitchen linoleum about half-way into the living room (on carpet) and then was all over the kitchen some more. That's the first time we've seen him be able to push himself up onto the carpet. After some fun in the gait trainer he was ready for breakfast and then off to school.

Usually John will nap about half of the way to school, an hour drive, but not this morning. He was nearly asleep about 20 minutes into the ride and then started clapping and giggling and little, evidently last nights joke was really good, and then started to stick his fingers in his mouth get them all nicely spit coated and stick them together, pull them apart, you know silly 2yo stuff. He was a little wild man in school, doing what he was supposed to do here and there but cracking himself up and Miss Amy too! At one point Mark and I both had to hide our faces because John was not doing what he was supposed to be doing, but was so funny that it was impossible not to laugh at him being bad. He was a stitch.

After we got home he did lay down for a bit, but then was up and ready to play. Today is the first time that I've just set him on the floor in his room with his toys and let him play alone for a few minutes while I got a few things done.

He truly enjoyed himself as you can see. He played there for a while, then was ready for some dinner. Hmmmm....mostly he wanted the meat and the steak knife, ah yes that Y chromosome is taking control! Needless to say we didn't let him have the steak knife but instead he had a delightful time stabbing a potato log with my fork. Always the entertainer. When Mark left for confirmation John and I went out for a walk. He was fascinated enough with the people next door that he was 'walking' sidways down the driveway and even after we got into the street he kept wanting to turn and watch them. He made it part of the way down the block and then was just ready to come back, Monday's really wear him out but we see each week that he is able to do a little more, stay up a little longer, etc. For now he's resting but I'm sure he'll be back up again later when dad gets back home.

Saturday, May 13, 2006

Getting Bigger?

I checked and the last pic that we had of John before our last camera died was on 3/1/06, this is the new picture from today. Does look a little older, bigger, and oh can you see the sillier?

John's day has been good despite an episode of puking at the end of his nap. It's that poop story again, he woke up this morning with poop solid enough that it fell out of his pj's onto the floor, at least it missed my foot. Anyway his stomach was starting to get distended and we could tell that he was starting to get uncomfortable. He did sit on the counter this morning and when breakfast was done and I was taking it to the table he got hold of Mark's hands and put them under his, as in "pick me up dad and get me over there now!" He ate okay for breakfast and had a great time playing with things.

After the nap and puking he played really well and then ate supper too, actually he had basically the same thing for supper that he had for breakfast, pumperknicel bread and butter, but he was eating so we were happy. He had another big poop explosion, his 2nd for the day, so his stomach now is back to normal looking, and so was ready for some playing time with dad. John sat on the floor and played with dad for a while and then was ready for bed. As a treat, and because it seems that a little something sweet helps him keep things moving through his system, dad went and got him a donut from Casey's. Of course the sweet ladies at church bring Casey's donuts to church enough that John knew exactly what was in the box when Mark came back through the door and held his arms out squealing. He was eager to eat a dozen or so bites of donut and would have eaten a bunch more, but then it was bed time.

I can hear him, he's not quite asleep yet, but playing with his friends, the tons of stuffed animals in the crib with him. When I go in later to change out formula bags and such there will animals everywhere. It's really cute and I would take a pic of that, but of course the flash would wake him up and that would not be entertaining in the least.

Friday, May 12, 2006

Just a swinging!

John's day has been wonderful. This morning started out with a poop story - sorry about that but in the life of a short-gut kid it's pretty central. He woke up with no poopins in his diaper, that was shocking, and he wasn't distended or throwing up or any of those things that has taken him to the hospital for a while after his poops really firm up. We called his GI nurse practitioner and she is ready for us to start making med changes again. Phew! I knew we would come through this respiratory virus and med incident but it would take a while, and it looks like we are finally there. So we are once again taking little baby steps towards weaning John off of or at least lowering the doses of some of his medicines again. We're thrilled to see him take these baby steps forward!

Blueberries for breakfast, oh how he loves those. We buy a frozen berry mix and eat it on cereal most mornings and he loves the blueberries after they've thawed a bit. Mark and I now pretty much eat a blueberry free berry mix, and our little silly guy has blue lips and tongue after breakfast. We took him out for a walk in his gait trainer this morning and he did very well. He was fascinated by the shadow that he cast on the ground and then when he got over that we were near a tree that's limbs were being blown around pretty good by the wind and he really enjoyed watching that. At the end of our walk Mark went back to get the jeep and picked us up so that we could go to the park. It's not that far away, but a little too far for John to walk it quite yet.

Today is the very first time that we've taken John to the park, truthfully it's the very first time that we've been to that park. Anyway we put him in the little kid bucket swing and he got a good tight hold on the front and you could just tell he was tensing up for the worst. We pushed him just barely and he was okay, then we started pushing him progressively higher and the higher he got the bigger the smile was. Finally we had him swinging as high as we were comfortable pushing him, high enough that we could stand up straight and push from about shoulder height and he was loving every moment of it. He was a little upset when we took him out and found the little rocking horses to be okay, but really he'd rather be in the swing. The first time down the slide was okay, and the next couple times was okay too and we thought he might not like the slide very much. But after we had swung some more he was holding his arms out to the big slide. Now we started him on the itty bitty slide with one of us on each side as he came down making sure that he didn't go too fast or anything like that. That was okay, but he enjoyed it much more when we put him on the big slide, laying down on his back and daddy caught him at the bottom. The park was a hoot and we are looking forward to going alot this summer.

When we got back from the park John ate a good lunch, for him, and then was ready for a nap. Since getting up from his nap he has been our cute little destructo-puppy, tearing up anything that he can get close to him and loving every minute of it. He's starting to yawn now and we're getting ready to put him down for bed, but wanted to let all know that John was great today.

Thursday, May 11, 2006

Not Quite the Terror!

John's day was better, he still isn't eating as good as he was a couple days ago, but we go through this now and again. He was in a much better mood though and didn't pull his ears nearly as much. While I was cooking supper this evening he had a great time stirring his hot wheels cars with a big wooden spoon. It was very cute! He did spend some time in his gait trainer today, and got a little better with going where he wanted to go. At one point he was able to toddle over and throw all the spices off the bottom of the spice rack and he was also doing well enough that he was able to follow us around on purpose. All in all it was a better day, and now he is sleeping peacefully storing up energy for tomorrow. Miss Shawna comes tomorrow and I know he will be excited to see her.

A Day of Advances

For the first time we decided this morning not to put John in his support chair to play as we got breakfast ready. We let him sit by himself, unsupported and playing with his easter basket of toys, in the middle of the kitchen floor while mommy and daddy worked around him. It was an unqualified success. He sat up the whole time and played and watched us and was very cooperative when taking his morning meds. He also ate very well for breakfast eating an entire small bowl of breakfast fried rice. He also did well throughout the morning sitting up independently on the counter, floor, or bed. He went down to nap a little after noon without any toddler terrors.

He did not get much sleep though, because his PT Shawna showed up a little early and even though he gave mom the 'do I hafta get up' look, he was rarin' to go by the time he was dressed and had his shoes on. Shawna was very impressed and was excited to see what advances in standing and endurance he had made. She is confident that John will no longer need the gait trainer before he comes close to growing out of it. There were a couple of cute moments during therapy. Shawna and mommy were blowing bubbles to big smiles from John, who was also reaching out repeatedly to pop the bubbles that he could reach. Usually when he has gait trainer time he gets to go outside, but today the weather was so cold and wet that it was no good for going outside. After he was in his gait trainer he kept looking at mommy and Shawna and looking outside and back at them and outside and when he got that he wasn't getting to go out he was a little disappointed.

Even so he was very good in therapy and very good for the rest of his day. During dinner this evening he did definitely display some toddler tendencies. He would gladly eat off the french fry that daddy would hold for him, but not from mommy. He enjoyed painting his tray with ketchup using every fry he was given, but he would not eat any fry that had ketchup on it. We have laid him down to sleep and he has not fussed at all. What a wonderful boy. What an incredible joy.

Tuesday, May 9, 2006

Terror of Toddlertown

John has been a little stinker today with his hearing aids and his eating. Daddy went to winkle (pastor's meeting) all morning and part of the afternoon and the little boy was not happy about it. He woke up this morning in a pretty good mood, asking for his 'ears' as we call his hearing aids and ready to play. But it was also a little earlier than usual too so it was not long before he got fussy and took out his 'ears' This meant some nap time and while he was ready to nap he didn't stay asleep nearly long enough. This led to an afternoon cycle of play time, fit throwing, 'ear' pulling, and crib time fit throwing. We finally broke the cycle with him actually wanting to eat something and then, even though he pulled his ears, he was ready for a real nap and slept well. After this late afternoon nap he was a happy little camper and played and ate supper and truly enjoyed himself until it was time for bed.

He was also a little gigglebox during play time today, repeatedly cracking up over things that his mommy was doing. she would hug and squeeze him and he would giggle louder and louder with each squeeze. He is also getting an understanding of one of his favorite things, blowing bubbles. Mommy blew on his hand and then he tried to blow on her hand and then tried to blow a bubble off the wand. When he played with the bubbles with daddy he wanted to pull the wand out of the bubble bottle himself and then held it over his mouth. He's getting it.

All in all John had a pretty good day today, and we are hoping that he sleeps well and is ready for another good day even if it is as the terror of toddlertown.

Monday, May 8, 2006

The Little Joys

The rest of John's Sunday was good, including some play time with dad when John was saying "go" and pushing the ball back to dad and catching it too. He ate great and went to bed a little early. So this morning at 7 we heard the chatter start. Someone really needs to invent the baby monitor with a record button because John's early morning chatter is so funny. We let him chatter for a bit and then went to get him up and there he was friends scattered everywhere, huge smile and a finger in his ear. He was ready for the day to begin. We were told while John was in the NICU and we were asking those first parent questions out loud, will he be able to learn to talk, will he be able to learn to walk, will he be able to learn to read - you can tell what is important around here, that the answer was "we don't know" a little disheartening, but then came the encouraging part, the doctors told us that even though he would lag behind developmentally for a while that we should not give up hope on his catching up so long as we saw development every day. And low and behold each and every day of the past 2+ years we've seen something new. Today is no exception and at this point in the day we've already hit 3 for the something-new-count of the day. This morning started out great, and when we got to the sink for the morning bath John was excited and happy to be there as usual. But he wasn't doing his normal, hold his hand in the running faucet and play with the toys a little, he kept sticking his hand under the water and watching it. After I shut the water off then he was sticking it all the way to the bottom of the sink and pulling it up, not sure what he was watching but it was interesting. The first little joy of the morning came when it was time to get out. Normally he stands there in the sink and wants to play with all the stuff in the windowsill, but this morning he bent over and was sticking his finger in the water watching it swirl down the sink, and it was cracking him up, no giggles, but the smile was huge, like when the camera is on. After getting dressed he noticed the picture in our bedroom for the first time that he really looked at it and then had to touch all the people in it before we left the room. This is a big old copy of an oil painting in very subtle colors. Mark had to go and drop his sick and dying computer off with the repair guy this morning so John and I were in the kitchen doing formula, meds and such and when dad pulled up in the driveway John was as excited as he has ever been for getting to school or a bag of M&M's. I'm sure he must have thought dad was gone for the day, but now he wasn't. So we are headed to school, taking our little sweetheart who is very talkative this morning, making new noises that I'm sure he won't make for his teacher, with a smile all the way around for the little joys in life. Sure hope your day is full of little joys too!

Sunday, May 7, 2006

Clap, Clap, Clap

Yesterday Mark was invited to speak at the Lutheran Family and Children's Services Mother's Day Brunch in Columbia, Mo. It was a wonderful event and we were very thankful to be able to help out with fund raising for the organization that helped us through all the ins and outs and difficulties of John's adoption. It was quite a big crowd, especially for John and he spent the first 20 minutes or so just listening to all the talking, laughing and such that was going on. He even let Janeene Foley hold him, Janeene is the lady who was in charge of his case at LFCS, a godsend to us and very sweet and nice. After he ate a few bites he decided that it was time for him to get involved in the action that was going on. As people would come over and introduce themselves and meet John he got more and more into it, and though he never really talked much to the ones that were talking to him, after they walked away he sure had a lot to say to the rest of the people at the table. When dad was done talking and after he watched everyone clap he got real excited and started clapping too. This is yet another John John milestone. His occupational therapist has been trying to get him to clap for over a year now, and he does put his hands together once, but only once for her and does the same stuff for us. I guess he just needed a bigger audience than the 3 of us because yesterday when the clapping was over he clapped repeatedly several times and in quick little motions, very appropriate looking clapping. This is also a big deal because of John's lack of stomach muscles and trunk strength he's not very stable in his motions, and up until yesterday we had never seen him do short quick motions, which take more coordination that slow motions. Not only were we thrilled with our little boy for behaving so well and not pulling out his hearing aids, or deciding he was done with the whole thing and throwing a fit, as he has done at some things in the past, we got clapping too! It was a fantastic day.

This morning he was reluctant to get up for church, kept grabbing his blanket and trying to stay in bed, but when we got him all ready and got him outside and he realized that we were going somewhere then he was excited. He did very well through church despite taking out his hearing aids a couple times and afterwards he enjoyed listening to the ladies visit while he played with a fork and cup. He has decided lately that he doesn't need spoons, he needs forks and knives. Yesterday at the brunch he kept waving a table knife around and every so often someone would come by and try to get him to take a spoon instead. He would take the spoon, lay it on the table and then grab a fork or another knife. As you can guess his daddy is way impressed with John's love of knives.

I'd like to put here a shameless plug for adoption and Lutheran Family and Children's Services. Having John in our lives is the most amazing, grace-filled, heart-filling, thing we've ever experienced. Life before John was good, life with John is good beyond words, beyond thoughts and beyond any hopes or dreams that we've ever had. God brought many people together to bring John into our lives, from birthmother to family, friends and church members, without which this miracle could not have taken place. God also brought together social services from the state and people who knew the law and how to work within it to make things happen. If you ever have a need, or just want to help someone else go through this process God Bless You and know that Lutheran Family and Children's Services will be there to help you too!

Saturday, May 6, 2006

Tickle Me John John

This evening after John got up from his second nap he and I sat on the floor and blew bubbles and read books. He did very well at saying "gao" when I would say "ready, set" and then we would blow bubbles and pop them. After a bit of this he was ready for books. We read several, he picked out the wheels that go round and round on the big trucks, the monkey's eyes, the lamb on every page of Mary Had a Little Lamb and then we got to one of our favorites. Horns to Toes is one of John's very favorite books and ours too, when we get to the page where we count our ten fingers and then tickle, tickle, tickle or count them again, John used to put his hands on the pages over the drawn hands so that I could count his fingers and tickle him. Then a couple months ago he decided that he would do the counting, and points to each little drawn finger, and then waits for me to tickle, and tonight after the first time of doing it this way, he pointed, I counted, then he looked at me, smiled and tickled himself. Then I asked him to tickle me and he tickled my arm. Later he even tickled dad too!

The whole day was this good. He woke up smiling and in a good mood, ate blueberries for breakfast with no puking and then got so excited over putting on his shoes that he played in the gait trainer for an hour or so this morning. After a nap he was up, wasn't too interested in lunch but was very eager for the gait trainer again. We took him outside for a walk and he had a great time. He went a little farther than last time, but it's a little cool outside and Miss Shawna wasn't with us so it wasn't quite as much fun. At one point he pulled out his left hearing aid and threw it on the ground, then pulled out his right hearing aid which detached from the ear mold, threw the aid on the ground and then ripped out the mold and threw it on the ground too. Of course as soon as I picked them up he stuck his finger in his ear to tell me that it was time to put them back in. By that time he'd thrown them on the ground 4 or 5 times and I was done playing this game so left them in my pocket. He was okay with that for a minute, took a few more steps, and then firmly planted his feet on the ground and stuck his finger back in his ear and would not be budged until he had his ears back in. He is not stubborn at all! A couple times in the walk Mark and I would each hold one of his hands and he would stand up and take a dozen or so steps and he even stood completely a couple times without us asking or holding his hands at all. Shawna tells us that he will begin to do this more and more and today was good evidence of her wisdom.

Before bed tonight John ate a bunch of french fries, some he even put in his own mouth, but the most fun was that he could dip them in the ketchup and then wave them around. He also enjoyed hearing Grandma for a few minutes while she said hi to him over the phone. All in all a good day for John. Hope yours was a good day too!

Thursday, May 4, 2006

Rocky wait....Smooth Sailing!

John woke up kinda cranky this morning, but sat on the bed unassisted and played and was even able to reach way out to get stuff and bring himself back upright on his own a half dozen times or so. But by the time that breakfast came around he ate just enough blueberries that when he threw up it stained everything it touched. We thought we were headed for a rocky day and were holding our breath. But after his nap he was feeling much better and in a much better mood too.

When Shawna, his physical therapist came he was so excited to put on his shoes and go outside and get in his gate trainer. He pushed himself, with his feet, all the way down the street in front of our house and onto the next block and back, okay we live on the corner but still this was the farthest he's ever gone without having to be pulled. He did great and had a huge smile on for most of the trip. From time to time Shawna would have him stand up, he tends to ride in the seat and push with his legs, and he stood up every time. Even after we got him in the house he was still pushing himself around and having a great time. At one point he was pulling his hands away from her playing a game and cracked himself up so much that he was giggling loud enough I could hear him all the way across the room. What a great time and such a hard working little boy today.

After Shawna left John decided that he was too tired to play more but was too awake to be stuck in bed so he sat on my lap for a while and then fell asleep. We don't get to do this much anymore so I really enjoyed just getting to hold him for a while as he slept waiting on dad to come home.

When dad came home we went to get labs. The CO2 is up to 18.2 and all the other lab numbers are good so we are doing great, great, great. After getting home we told dad goodbye again and John and I sat on the floor and read books for a while. The dogs came over to play a bit too and even let John pet them, then Lucy got close enough that he gave her a big hug and a huge open mouthed toddler-kiss. Yuck! But they both were happy about it, well John was happy and Lucy was okay. After that he was ready for bed. He is now sleeping peacefully and relaxed, stretched all the way out in his bed, he sure is starting to fill up that crib.

Wednesday, May 3, 2006

Morning BANG!

We couldn't access John's site last night, livejournal seemed to be having issues, but all is well and back up today. We woke up with a bang as lightening hit pretty close to the house, but not close enough to damage anything here or nearby as there were no sirens and such to follow up with.

Yesterday was a pretty good day for John, if a bit long and hard because Dad wasn't home all day. John and I are very spoiled with dad being able to be home most days and up here with us, as opposed to down stairs in his study, for meals. When he's not home we miss him, but never more than at meal times when John holds out his little hands to hold hands for prayers and is looking at me like "hey, I've got this extra hand here and where's that daddy that holds it" so I hold both hands and on we go. He ate at every meal and I was so proud of him. It was our first time to try mac&cheese and John loved it. He has had a problem with dairy products in the past and we've not given him more than a bite or two of ice cream here and there so don't know how he is doing with it anymore, other than not having to deal with it. So I made that old box mac&cheese with no butter or milk and he ate a full serving of it, much of that speared on his own fork and gotten to his mouth with a little help now and again. He seems to have suffered no ill effects from it, hooray, it's always nice to have something more that we can put on the list of John likes this.

After a nap John was ready to 'go, go, go' in his own words. So I put him in his gait trainer and we went outside and walked up and down our street a little. John was having a great time and even moving his feet for a good bit of this, as opposed to sitting in the seat and just letting the toes of his shoes drag down the pavement. Thank goodness for those extra tough toes on the shoes. Anyway we got back to the house and I decided to try him in our big bike-wheeled stroller, he used to hate it but now loves it and was disappointed when I realized that the tires were too flat to take him for a walk and had to get him back out. Dad is going to get those tires blown up for us today. I asked him if he wanted back in the gait trainer and he was enthusiastic to say the least. He stood up for me to put him in and even spreads his little legs out now so that I can pull the seat through and fasten it. We went all the way around the block and he stayed in the whole way, moved his feet most of the time and enjoyed most of it. He obviously was done a couple driveways before our though because when we went back that's where we found his hearing aids laying in the road. So he went immediately to bed. Thou shalt not throw thine hearing aids in the road! He was an unhappy little boy for a bit, but dad came home and rescued him and then he was thrilled not only to be out of bed, but mostly because dad was here.

Our evening ended with a trip to town for labs and grocery shopping, but first off dinner. The people at the chinese restaurant that we like so much come by and talk to John a lot and they think he's cute because he loves the crab legs. Well Tuesday night there are no crab legs, but John still did a good job eating, chicken, potato log, even some rice, cantaloupe and of course his favorite fortune cookie. He sat in the high chair the whole time and with so few people in the restaurant on a Tuesday night he often had the undivided attention of the waitresses, they are his favorite, right next to nurses and pca's of course.

He also did very well all the way through Walmart, actually rode in the cart the entire time. That's not really a given when he is tired, which by that time of night he was starting to wear out, but he did very well. He was thrilled when we would give him stuff to hold and when we got to the check-out line and daddy held him up so that he could reach his own M&M's the squeals of delight drew the attention of a good part of the surrounding people. One cashier gave him a sticker, I could tell he was tired, because a sticker will usually elicit almost as much joy as a bag of M&M's but not last night, the end was coming.

At the lab he was tired enough he didn't talk to them much, but sat there like usual and held his hand out so that they could take his blood. He did smile for the lab lady a little, but by then he was tired and ready to go to bed which is exactly where he went when we got home. His lab numbers were a little better, the CO2 is up to 16.2 but that still isn't his normal so we are waiting for word from his GI nurse practitioner to see if there is something we need to be doing about it. The funny thing was he had normal platelet numbers, like 211, John never has normal platelet levels, actually if he breaks 100 it's a great day. So we are interested to see if this is a trend or just one of those weird things that happens once in a while. The lab lady even told me that she had to double check it because she was surprised that he would have that high of a number, and then took a good look at them and they were good looking platelets. So we'll see.

Monday, May 1, 2006

Hooray for Poop!

Sorry for the poopy title, but in the life of a short-gut kid, especially one with kidney issues too, potty talk is pretty much the norm. Today is the very first time that John has had anything even remotely resembling a good poop since he became ill on Good Friday, so we are celebrating poop.

It was also a good day for several other things. School went well. John sat up through most of his session and cooperated and even talked a bit. He talks more at home than he talks for Amy, his therapist, but that's pretty normal for kids. Our homework assignment for the week is to work on big mouth movements, like those made for saying vowels. John has gotten really good at sticking his tongue out again and so we're on to other fun things like holding his mouth open as far as he can. At Sam's he suckered the sample lady into a sample just for him, he plays shy with her but she's a real sweety and talks to him every time we go. On the way home he napped on and off and after we got home he napped a little more. While Mark was gone to confirmation I got him up and put him in his gait trainer and he loved it, had big smiles and was ready to 'go, go, go' right up until his pump bag fell and startled him, that was it then he threw fits and cried until I put him back to bed. It was obvious that he was just a little worn out guy but I'm really looking forward to putting him in the gait trainer tomorrow. Today he even stood up while I hooked up all the gear for him, so that was a big improvement! After Mark came home John got up and shared some supper with us. He's eaten very well all day and tonight he ate some spaghetti and garlic toast, but it wasn't too long and he was ready to go back to bed. All in all he's done very well today and seems to be getting over all the ills of last week.