Still home...

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

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

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

Well VBS is over...

...and John managed to make it to 3 days, or rather nights. That's not too bad for his first time. Dad went to the closing without us tonight because John was napping. He had big fun in the swimming pool this afternoon, and feasted on his Happy Meal on the way home and then was ready for nappage, hooray!

While the house was quiet and I should have been doing other things I decided that I'd play with the new photo-printer and print out the vacation pictures that are here on the blog and made John a little book about his vacation. He was thrilled. I put in the words and signs for "My Vacation" and about flying, having fun, and seeing his family and he was already working on the new signs and loved the pictures, especially the picture of Uncle Cute Nose blowing bubbles for him. I find it interesting that he is even more fascinated than usual with words when they have the pictures of the signs with them, I so wish that he could talk to me more because I'm sure he understands that they mean something and are important to him. One of these days he'll be talking more and I can't wait!

All John's therapists are now on board for 1x a week therapy, what do you know John behaves better and learns faster that way, sure makes us feel good about the decisions that we've made. Speech this week went very well, Miss Amy had new stuff for John to do and he was thrilled to play with her. PT with Miss Gertie went very well too, and she says that botox for his neck is immediately necessary because he's not currently using the full range of motion on his neck. Today Mr. Paul told us that he agreed with that and think that more tummy time is what is needed. Tummy time would be the big downfall that we have as parents, John hates it and well we aren't the best about making him do it. They have some strategies for us to try so we are going to give it another big effort, sigh, we'll see how it goes.

VBS Week

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



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

Dog Trees

I've been reading a new book Keys to Raising a Deaf Child by Virginia Frazier-Maiwald and Lenore M Williams, M.A. I wish I would have found this book a long time ago, but am thankful for it now, and would recommend it HIGHLY to anyone who finds out that their child is deaf or hard of hearing. It's the most pro-child book I've read and cuts through all the different theories on how best to raise a deaf child and makes the information accessible to a hearing parent who is looking to give their deaf child the very best chance in life that they can.

Now having said that I will say that it is not necessarily a pro-homeschool book, but I don't really find that to be a drawback. It contains information that I've not seen anywhere else in such a succinct and straightforward manner. Everything from the pros and cons of each of the ideas on educating deaf children to a frank discussion on what it takes for a deaf kid to learn language and how vitally important that is to the child. John currently attends the Moog School for the Deaf in Columbia, Mo., we are blessed to have them and thankful that they are there. We are also blessed that in this oral only school John has a therapist who sees the need for him to have sign language and other communication options, who sees that language is of the primary importance and oral can come when it comes.

One of the things emphasized in this book is that for a deaf child to learn English it has got to be spoken to them, if they have amplified residual hearing, but that they have also got to have it signed correctly for them too. As any older person who is new to hearing loss and hearing aids will tell you, even the best most expensive hearing aids don't replace good working ears. Some speech is lost and according to this book what is the most lost is endings and the ability to differentiate between similar sounding words.

We've known for a while that John has a hard time with 'big' and 'pig' and can tell them in context now, but on their own he's guessing unless you are enunciating very, very well. What we didn't realize until a couple days ago was how hard it was for him to pick up the ending of the words. We had a good chuckle over our lesson, when he started telling us that he wanted to 'open' the cabinet to get out the 'dog trees'. It took me a second to realize what was going on, that he was after the 'dog treats', but since he can't quite hear the ending for the word and has no sign for 'treat' it's still 'dog trees'. Now the dogs don't care what you call them, at least Maggie is ready for them all the time, but really we want John to have a better command of the English language than that. So today we found that there was no SEE or ASL word for 'treat' and taught him to call them 'dog snacks' he was fine with this for the moment, but it sure showed us how intricate these language issues are going to be.

Thankfully John is a very smart little boy, he craves language like women crave chocolate and would like nothing better than for us to sit and talk, read, work on signs, and such with him. This has shown us that we are going to have to take some further steps around here to insure that he keeps up with language comprehension and so now we are imposing a 'sign language only time' for while John is down for his naps, okay other than when we have company. This was suggested to us by some savvy deaf-ed homeschooling mommies as a way to make us practice both our expressive and receptive sign skills and it's certainly time for mom and dad to get with the program and make sure that we can sign fluently so that John will learn to do so too! Oh and if you're wondering why we decided to do it during John's naps, well mom and dad are ssslllooooowwwwww and will have to finger spell stuff because their current sign vocab is not any bigger than John's, and we don't want to overly frustrate the toddler, besides he needs to keep learning to use his hearing too, at least that's the excuse I'm using at the moment :)

"I want more ice, please"

We have been working for several weeks helping John to string his signs together in sentences. He does this willingly, but always, until yesterday, only with prompting, at least that was the only way for him to get them in the right order. Last night we had dinner at church, and after Mark had left to preach elsewhere John and I were still sitting there visiting and he decided that he wanted more ice than I had. Once he got my attention John signed to me "I want more ice please" with no prompting whatsoever. Again today he was able to do the same thing, once straight and several times with the words not in the proper places in the sentences, but still understandable!

I said ... "ALL DONE!"

We have worked so hard for John to learn to sign that he was 'all done' with this or that, instead of throwing it in the floor, or just crying or what have you. Well today he showed us that he could not only say 'all done' but he could do it repeatedly, and emphatically! Desiree, John's Occupational Therapist was helping him learn the concept of 'big and little', he's not having a good time with this concept and isn't overly impressed with the whole deal. So a few minutes into this instead of signing 'big' like he was asked, he started repeatedly and emphatically signing 'all done'. Now, 'big' is signed by spreading your hands out to show big, if you talk with your hands like I do you probably are already proficient at this sign, and 'all done' is done by placing one hand, palm down, on top of the other hand, palm down, and then spreading them apart, think umpires and you got it. John's not overly distinct with some of his signs, albeit they are improving, but these two today were very distinct, and 'all done' was quite emphatic. He did finally settle down and give us the 'big' and 'little' signs and distinctions that we wanted from him, but still he would rather play than work, hmmmmmmm.....

Talking to myself

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

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



Oops, I forgot to show you the last one



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

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

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

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

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

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

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

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

All Done

Everyone has tried like crazy to get John to make the sign for 'all done'. It's relatively simple, well within his abilities to make and yet even though everyone, OT, Speech Therapist, Mark and I have tried it has taken months for him to get ahold of this sign, even though he normally can learn 2 to 4 signs in under an hour. Well today was the day that the 'all done' sign finally became a part of John's vocabulary. I was feeding him lunch after daddy had to leave and he wasn't happy, there was one last bite left and he got his stubborn little face on looked me right in the eye and made a clear and unmistakable 'all done' sign. Poor kid, while I congratulated him on finally getting the sign down pat, he still had to take the last bite!

Blowing Feathers

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

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

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

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

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

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

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

Two Handed Goldfish

Tonight was John's first taste of Goldfish and oh does he love them! One handed, two handed, give me more! His other favorite is, of course, ice cream. The sign for 'ice cream' is to close your hand with the thumb sticking up, sort of a Fonzi position, and make the motion of licking your thumb, without actually licking it. Well, when your 3 and love ice cream that sign looks more like licking your whole hand and maybe going to eat it if you don't get some soon. We now have to spell 'ice cream' and I'm relatively sure that won't work for long either :)