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.

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!

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!

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!

Rocky road...no 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.

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.

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.