Change is Inevitable...

...and often good. Around here lately it's been interesting. John is at times eating full adult portions and at other times not eating at all, pretty typical toddler stuff! He achieved escape from the lineoleum and was able to get his gait trainer up onto the carpet and all over the living room on his own. Of course now that it's been readjusted so that he stays properly orientated in it he can't do that, but each day he can do more and it won't be long and he will surely be able to achieve ramming speed on carpet too! He's been delightful and happy as always and wanting more and more independance as each day goes by. Lately he's been attempting to put on his own socks, wants to put his shoes on, is even more demanding of when he wants his ears in and has kicked his crib apart. Our little stinker is growing up day by and day and it is a pleasure to watch and wonder where he's going from here. His new physical therapist, well actually one of his old PT's that has come back holds out great hope for his progress and is wanting to start him in pool physical therapy and eventually in Aikido! Every day with John is a great adventure and tomorrow our adventures will go on the road. We are headed to Iowa for the 4th of July weekend to celebrate with our friends there. John will surely enjoy their 5 children and hopefully they will enjoy John too! If you'd like to see our other new adventure this is the link to our second custom clothing auction. It's been fun to make and John has enjoyed being a camera ham for us and showing off his new clothes too! Here's hoping that you all have a great 4th of July weekend!!!

Hand Check!

You see that beautiful smiling face, well he's learned a new trick. Just this morning laying in bed with us for a few minutes before we got up and around he got that huge beautiful smile on his face again and voila the diaper was half off! Okay I know I'm a totally weird mommy but I'm so excited, this is such a normal baby/toddler thing. For the whole rest of the time (not very long I assure you, daddy was not nearly as impressed as mommy) before John had his clothes on he would look at us and sneak that little hand down there to see if dad was still guarding the diaper tape, a couple more times of finding dad's hand just far enough out of place to rip that diaper open and it was time for clothes! It promises to be a silly day in this Hass house, here's hoping it's a day full of smiles for you too!

A Long Awaited Update

Tomorrow will mark the 2nd whole month that John will have not been to the hospital for anything, admission emergency room or otherwise. We will properly celebrate by staying home. John has done pretty well for the past few days. After the accidental overrate on his formula last week the GI team was encouraged enough to try and see if a 500 ml bolus every 6 hours would work. The first 24 hour cycle with it John was doing alright, his appetite picked up and he was having no hydration issues. But by the middle of the second cycle his stools became looser and more frequent, though not a great deal more volume to them. We decided to go back to his previous routine and his system has been recovering slowly.

We also have had a medication change. We had been having problems with one of the anti-biotics that helped to manage that bacterial overgrowth issue John has. The GI team switched to a different anti-biotic that John has used before, a powerful one called Cipro. We give John one dose a day and so far we have had no adverse reactions and his poopins have improved some since we started.

This week is going to be a busy one at home for John. We are looking forward to him modeling a new outfit designed and tailored by his talented mom and getting the pictures and all those things necessary for that outfit to go out. We are also looking forward for John to get to see his physical therapist, Paul, who hasn't seen John in almost 18 months. It will be a big day for John and Paul. This week is also important because on Friday we are going to be going up to Iowa to see the God-Cousins and celebrate the fourth with them.

Happy Father's Day!

Here's hoping your Father's Day was great! Ours was blissfully quiet and lots of fun too.

Today was another school day and John was a hoot. He enjoyed the ride in, was so excited to be there and then did pretty darn good during his class too. He did very well playing with the little barn and it looks like his motor control is picking up some, he's becoming a little more steady with his movements. He was pretty consistent with 'go,go,go' and even got a few 'go again's in there. He's getting good enough that his 'work' is being made a little harder for him. Instead of getting away with just some gibberish when Amy, his therapist, wants him to repeat her, he has to at least make a noise that is getting close or at least has the proper amount of syllables in it. John is making progress one baby step at a time and most of those steps are taken with smiles!

The pictures show you our other new trick.

He is now able to get a spoon in his mouth, even a big spoon, whenever he wants to and is occasionally getting food in there too. He's pretty good with bigger things and can even manage something little like a cheerio now and again. His appetite is also picking up and his naps are getting weirder, you know that good toddler stage when they don't want to take a nap but need one and then if they go down late they are up forever. As in he's sitting next to me right now eating cheerios and hopefully will be going to bed soon!

We had what could turn out to be a very happy accident today, when his formula was hooked up after his ceralyte run the rate wasn't changed from 200 ml/hr to 86 ml/hr. After several hours of this the bag ran empty and we realized there was a problem. He's been unhooked for several hours since then and so far we've seen no ill effects. Depending on how the night goes we will be calling his GI nurse practitioner tomorrow to see if she is ready to try some experimentation. These happy accidents often work out very well for John and this one might also.

One last thing before I forget. John likes the new braces, we are still only putting them on him for an hour or so each day, easing into it, letting his feet get used to them. But the most wonderful thing is coming of it, he's stood to get in his gait trainer for quite some time now, but with the braces not only will he stand but he initiates his own steps into the trainer and even while we are supporting him doing this if we don't pay careful attention he tries to walk right out of our hands. We've not seen John's new physical therapist yet, but know that when Shawna gets a chance to read this that it will give her smiles. Every time he does it we tell him that Miss Shawna would be so proud of him!

First Hair Cut and Family Tradition

John got his very first haircut today!!! He was very good and sat pretty still until the lady sprayed his hair with water, then he had to sit on mom for the rest of the hair cut but did great and it's nice to see his "head" evened up. The Don King doo had to go!

The picture didn't show his haircut very well but I thought everyone would enjoy seeing him upholding an old family tradition from my side of the family. My grandpa was a great plate licker, my Aunt Janet is well known for the same and of course my mom, sister and I can lick the ice cream out of any dish you got. John has joined the crowd and eagerly licked the ice cream from this plate. Good boy!

Good news all around!!!

Hooray! We got the braces today. He's not gotten to do more than just stand in them for a minute or two because they won't fit down in his shoes. But tomorrow we'll go find him a pair of shoes that they will fit in and then we'll get to see how much they help. Everyone is holding out high hopes for these braces and so are we. They are extremely cute, we'll post a pic later this week and so far John likes them.

The other good news was the transition meeting yesterday with the therapists and First Steps coordinator and the principal from the Slater Elementary School. John turned 2 1/2 yesterday and so it was time to meet the school officials because at 3 his therapy and such will be handled by the school system. We were all kinda sweating this meeting because of the horror stories we've heard about school districts refusing to let the little deaf kids continue with the Moog School and other things. But God has once more put all the right people in all the right places for John's good. At 3 John's care will transition to the public school and the principal was impressed enough with the therapists that he currently has and the care that he will require to agree to contract with Moog and with our other therapists so that John can continue on as he is going. This is monumental good news, way beyond what my mere words convey. Oral deaf education is very specialized, it's a very new thing and the Moog School is one of the very few places that teaches deaf children to talk. To be able to keep John in Moog and with Desiree, his occupational therapist who has been with him since he was a year old is a big huge blessing in John's life and in ours!!!

Our little stinker is doing very well. We have of course been through the whole puking/med cycle again and his GI specialists are still trying to figure him out, but he remains cheerful and down-right silly. He is sleeping in full goal-position at the moment and storing energy up for tomorrow. I'm sure he'll be a hoot and will be looking forward to time in the gait trainer and playing. Oh and by the way, today he was good enough at moving around in his gait trainer purposefully that we didn't have to wait for him to come to the breakfast table he was waiting there on us!

Coke and a Smile

Our little boy is such a camera ham. Last evening we were downstairs getting ready to watch a movie and he kept reaching for the Coke can. We decided to snap a few pictures of his attempts to get into it (It was unopened or else we would have had a clean up to follow the picture taking)Sunday was a good day for John. He didn't have much trouble at church, he was good for most of the service, after worship he did take a few bites, but only of chocolate brownie. After John and his mommy got home it was time for him to take a nap, and he took a good long one. It was after his nap and dinner was made that the picture was taken. He ate like a little piggy; eating a good chunk of burger and bun and at least six whole fries. He went to bed a little early, but made up for it by waking up several times and needing attention.

Monday was a late morning for John, he slept in and woke up in a very good mood. After bath and getting dressed he was eager to get into his gait trainer and spend some time toddling around the kitchen. For breakfast he had quite a few blueberries and did well with them. After breakfast he was not wanting his gait trainer, but reached for his toys in the living room. After playing with them for a while he went downstairs to work with daddy in his study and had a good time in his exersaucer until he needed to be changed.

After being cleaned up and redressed he was ready for lunch. John ate about a quarter of a big kosher hot dog and totally enjoyed himself. He went down for his nap easily and stayed asleep for almost two hours. He spent the time after getting up from his nap playing on the floor with his toys, riding on his airplane and really getting a hang of pushing the go pedal, and finally in his gait trainer running into and over daddy's toes as he worked in the kitchen. He was delightful company at dinner tonight, but didn't have any appetite. After dinner it was time to get ready for bed and John enjoyed a few books and then we said prayers and put him to bed.

Since bedtime he has had to be changed once and bedding replaced including one stuffed friend that now has to go to the laundry. He is still making some noise in there, but we hope he will get to sleep soon. Tomorrow is a big day for him. We have school in the morning and after his speech therapy there will be a meeting with his therapists, his service coordinator Kathy, and representatives of the local school district to set up the transition for John since he will be turning 3 in December and will be 'graduating' from the First Steps program and will have to come under the school district. Please pray for us, this will determine what we will be able to do to meet John's future therapy needs.

Bummer!

No braces yet. The braces are made out of plastic which is heated and then pulled into shape over the casts that were made off of John's little feet and legs. When the plastic was pulled it had a problem and couldn't pass quality control so they are back to the drawing board and we are still in the waiting game.

We had a nice therapy session with Shawna, it sure is hard to tell a good therapist good-bye. Shawna has been with John, with us, since early last year when John could not sit up by himself, couldn't roll over at all, cried when you put him on his knees, stood for only seconds at a time and then only with much support and cried through therapy most of the time, oh and lets not forget needed a mommy break at least twice during the hour long session. She's been through more hospitalizations than I can remember, and each time when John came home a little weaker, able to do a few less things, and a little crabbier she would start where he was and gently help him get back to where he had been before he got sick and a few steps further. We will miss her dearly, but know that God will provide a good therapist for John and that all the kids that Shawna takes care of will be well blessed with her loving care!

We started John's vitamin E supplement on Friday and of course aren't seeing any dramatic results, but then he's only had two doses and we of course have little or no patience.

Friday on the way home from Columbia, John slept a good bit and then when he woke up and we weren't getting out proceeded to scream all the way home! He's getting much louder or our hearing has drastically improved with time. There were of course no gypsies to sell him to on the way so we brought him home for a little much-needed rest before we headed to church to help set up for the rummage sale.

At church he was in a great mood. We took his gait-trainer so that he could wander around while we helped get things set up. He loved it. At first he was content to just kinda wander around the parish hall but when he found the open side-door to the sanctuary he started sneaking to the front. It would get all quiet and then we would notice that he had disappeared again. The little silly guy would be stuck between the pews and folding curtain alongside the pews heading to the front with all his might. Never did figure out exactly what he was after, but once we closed the door he decided to go explore the kitchen. He was in great form all night and had a wonderful time.

This morning he slept in some and then was ready to go again. We took him to church for the rummage sale for a while, of course we didn't take the gait-trainer because there were too many people around but one of the nice ladies, Barbara, held him and let him play in a utensil drawer and so he had a good time anyway.

The rest of the day has been rather peacefully dull, well except that after his nap he turned circles in his bed enough that he had to have another bath. Silly guy! He played well downstairs while I was working on bulletins and now is fully refusing to go to sleep. He's asking for his ears and acting like he's ready to stay up indefinitely. Poor kid, I just don't think it's going to work.

A Big Update

Since Sunday a great deal has happened with John. Monday was a day off for all of us and John was doing well in terms of eating in the morning, but as the day went on he started having tummy trouble with too many poopins. We talked to the GI team at St Louis and we switched around the way that we gave him the Metamucil to half the amount of Metamucil in the same amount of water only once a day. This seemed to help through the night and with some extra fluids he slept peacefully.

Tuesday was a big day with school for John, it seems that he is getting more familiar with the trip as he gets excited about school a little bit sooner each time we go. On the way we stopped to pick up breakfast at McDonald's and John ate very well, almost a whole egg from a biscuit. His speech therapy went very well with Amy giving us some homework for him and also giving us some possibilities as to his speech habits that we have heard from him. It is possible, though not clinically diagnosed, that John has a neurological issue known as developmental vocal dyspraxia. This condition fits what we see John doing vocally. This is why he acts like he has so much to say but can't seem to get it out. The way Amy described it there is an obstacle between his brain and his motor controls for speaking, and the more situational stress or sensory input involved the greater the obstacle. This is why when he is relaxed and reading a book with mommy he can repeat a complex work like ladder once on his own but can't when prompted by mommy, daddy, or Amy. It also explains why his little mouth is moving so much when someone is talking to him on the phone but he is completely silent. There are therapy plans that Amy is investigating and we will probably be looking at months if not years of speech therapy ahead for John. The rest of Tuesday was spent getting errands taken care of and the opportunity for John to have more fast food, which he wasn't too thrilled with. When we got home John went down for a good nap, got up to play and be cute, and then went to bed and slept well through the night.

Wednesday was a day of contact and information about John's various issues. The GI team found out from John's latest blood studies that his levels of vitamin E are low and so we will be picking up some supplements for him tomorrow. John's appetite wasn't great through the day, but he did eat some and his poopins were better than Monday's. He took a good nap that afternoon and spent the time afterward in his gait trainer and playing and being especially cute for our friends who had come for a visit. He went to bed a little later than usual and had a good night.

Today hasn't been as good for John, especially this evening. He did eat pretty well to show off for our friends, but hasn't eaten anything since then. His poopins have not been as good, but for the most part today has been excitement and play. He wore himself out playing in his gait trainer and and has been so cute especially with the way that he has been wiggling around in his crib. This afternoon we got some pictures of him playing in his crib before we got him up from his nap.



He was turned sideways on his back with his feet stretched out over the top of the side rail. The little boy was lounging and playing with all his stuffed friends. This afternoon was full of fun for him but he didn't eat anything else and he started acting like he was going to have some trouble through the night. When it was time for bed we laid him down, but he wouldn't go to sleep. We got him up to see what he needed and after some big burps he finally let loose and puked a good bit. After cleaning him up and getting him ready for bed again we put him down again. He acted like he would sleep, but after a little while our friend, who was sitting closest to the baby monitor, swears that he said, 'Mommy, want daddy.' It wouldn't surprise us if he did say that. Well of course daddy went and got the little sentence speaker out of bed. We cuddled for a little bit and finished the card game we'd been playing. Then we tried putting him to bed yet again. After a little bit we heard some strange sounds on his monitor and went in to find that he was starting to puke again. This time he needed a bath to get cleaned up, but obviously felt better for it, because he had to take one of his bath toys with him when mommy took him out of the water. After some tummy rest and getting him back in a clean bed we have set him up for some extra fluids and are praying that the rest of the night will be a quiet one.

Tomorrow is a big day as we are getting his new braces for his feet and ankles and we'll be seeing his PT Shawna for the last time. She has done so much for John, but now he will be seen by another PT.

Pentecost Picnic Pumpkin

John's day began with overwhelming cuteness. He needed to be woken up to get ready for church, and he was hilarious. He stretched his arms and legs and rolled his shoulders and hips and yawned and tried to pull his blankie back over him. When he was pulled up out of his bed and accepted the fact that he wasn't going to go back to bed he put his fingers in his ears and started smiling. We got him ready for church and had time for breakfast, but he wasn't interested in egg or bagel.

During worship John behaved very well, but preferred to sit on the floor instead of in the pew, he and his mommy sit in the front pew anyway so this was not a big distraction. He had a couple of occasions that he got fussy but overall was a good boy this morning. After worship he was his charming self for the ladies of the church. He and mom enjoyed the walk back to the house and got everything set up for him to go down for a nap, including his dose of metamucil.

When he woke up from his nap it looked like he had the remnants of a sea monster in his diaper, but he had good consistancy and was feeling good. Today was the church picnic for the congregation out in the country, and we all went out to visit and have some fun. John was a great helper, holding on to tea bag wrappers for his mom, and letting the young ladies hold him and visit with him so that they had something to do at the picnic. He did eat pretty well at the picnic and did have a lot of fun. When it was time to go he kept looking at daddy and looking at the young lady holding him, and looking back at daddy, as if to say, 'Can we take this one with us please?'

When we were getting ready to go John began to show his two attitude. Admittedly we were talking instead of going and he was already strapped in to his car seat, but he thought that was the appropriate time to fuss, holler, and pull out his hearing aids. We drove home with the fussy pumpkin and got him cleaned up and ready for bed. We gave him the second dose of metamucil as well and he was ready for bed. Late tonight he had some tummy trouble and started puking. After cleaning him up and getting his bed squared away he went back to sleep quickly. We gave his some bowel rest and then have started his formula again. Hopefully he will sleep through the night and will have no further trouble.

A Very Good Day in Toddlertown

Today John has made some improvements in all areas. He woke up with bright smiles this morning after an uninterupted night of sleep, by him or us. We had time to get things ready for his OT Desirae to show up. This was the first time she had seen him in his gait trainer and moving around. Before today we had either just gotten him up or had already removed him from it when she arrived. She was thrilled to see how well he was able to follow her around the kitchen. After seeing him in the gait trainer we took him out and worked on the floor with him in a crawling position and on his side supported on his elbow. This was the first time that he didn't fuss and holler the whole time we were working on him, just part of it. The time flew and therapy was over. John accomplished a great deal, and everything went alot smoother. We also got to pass along the Bumbo chair that had helped John a great deal in the beginning, he had graduated from it weeks ago. Desirae has another little boy that she works with that can use the Bumbo chair, and will mark it, "From John with love."

After Desirae's visit we sat down to eat breakfast, and this morning the little stinker was in fine form. We had cereal and once again he would only eat blueberries from daddy, at least he ate a good mnay and kept them down. But when he was offered a bite off of dad's bagel he bit it off himself, but then looked right at dad and rolled it off his tongue onto the tray. His attitude is certainly not delayed in its development. After therapy and breakfast he was tired and needed changing so we cleaned him up and put him down for a nap.

He took a nice long nap and woke up with big grins and fingers in his ears. John spent some time playing in his exersaucer and then we decided that he looked like he needed some crab legs since he hadn't been very crabby at all today. We went to our favorite Chinese buffet and the crab legs were very good, even John agreed. He ate well and was of course very entertaining to the waitress, who is always glad to see and help him to smile. After dinner we went to the store to pick up a few things that were needed and John was very much the charmer to everyone that looked his way. We brought him home and got him ready for bed and he is now sleeping peacefully, hopefully it will be another good night.

The Saturday Sillies

As you can tell from the picture our little silly has had a good day! He woke up with smiles and fingers in ears and wanted in his gait trainer to play right after he had a good long drink. He is getting better everyday about moving purposefully and has gotten the hang of pinning a parent against a cabinet. He thinks it's funny, and well so do we, so of course he keeps it up.

When he woke up from his nap this afternoon he was especially exuberant, full of giggles and smiles. He would give himself tickle, tickle, tickles and then giggle and giggle and then he'd give daddy tickle, tickle, tickles and giggle about that too. He was very talkative right up until he heard Papa on the phone and then he was all smiles and huge eyes and excited but no noises, except that at the end he finally decided to honk his nose for Papa a couple times.

He's not eaten as well as usual today, but we are experimenting with giving him some metamucil to keep things moving so it will probably take a while to adjust to that. The true test will be tomorrow, if the sweet little old ladies brought donuts and he eats them we'll know he's on the up swing.

This evening at bed time, after prayers he absolutely had to have a drink out of daddy's bucket - that big cup you see in the picture. As you can tell it was a good time had by all. He is growing more and more thrilled with open cups, which he spills very well, and straws, which he mostly flails around like a sword and less and less thrilled with his sippy cup. This is the same way that he switched from bottle to sippy cup last year and so we figure we're building up to a change. A messy and rather interesting change, and one in which we are ever so grateful that he really only likes to drink plain water.

A Miniature but Patriotic Ham

The picture above was taken as we were modeling a new outfit on John for the fourth of July. It is a custom boutique set that his mom made for him and that she will also be making for another child whose parents have the winning bid on ebay. This is not intended to be an advertisement. It's just a chance to share how good John is looking this week and to explain in part why we haven't been keeping up with the blog too well lately.

John has been going through some tummy trouble of late as we have been noting previousely. In talking to the GI team at Children's were working on switching the antibiotic routine that he has been on. The medication that is supposed to be the magic bullet for Short-gut bacterial overgrowth issues doesn't seem to be working on John. So we may be looking at other meds to try and strike the proper balance in his intestines.

Even with these issues he has been making progress with his strength, endurance, and ability. He is getting around more as well as more intentionally in his gait trainer. He isn't able to make great progress on the carpet yet, but once he does the dogs better watch out or get used to being chased by the two year old. This should be helped, or rather aided and abetted, by the new AFOs that John will be getting on June 9th. His PT Shawna was with us for therapy on Thursday and was thrilled by his progress and he has been helped immensely by her aid and support. Shawna is going on to other things and next week after John gets his AFOs will be his last session with her. We are grateful for the good she has done for John and we will all miss her, especially John.

We hope that the rest of the week will be quiet and that we can get John through this to some more settled progress both with his belly and with the rest of his efforts.