Halloween for the Boo

Well, this is my first installment for Halloween '08 at the house of the Boo. Thinking on it it's likely this will be my only installment TODAY but I'm willing to bet there will be another soon with pics from Halloween night and the wonderful and joy filled chaos, mayhem, and bedlam.

Ben had his "Book Character Parade" at school today. He went as Tigger! He really wanted to go as Spiderman but we didn't have any Spidey costumes that fit him and the one old one we did find was horribly stained so we decided it was time to "retire" it. He didn't seem too happy about being Tigger last night and screamed hysterics when we put him in his costume to try it out... so I had my reservations about how it would go at school today. I sent him in with a note saying that last night he had cried and cried and that if he didn't want to wear it to please not force him and just let him march in his every day clothes and he could go as "Jackie Paper" from "Puff the Magic Dragon!" LOL!

Much to our complete joy though we saw Ben come around the bend at school with the other children decked out in his Tigger costume and smiling as he held Miss Gail's hand :) He looked really excited and proud of himself and when he saw his Daddy, baby sister, and I gave us a big old smile and waved. He walked along with Miss Gail as happy as could be and even stopped for a moment and gave Mommy a big hug and a kiss. I was nervous he would cry as they went into the building but he just waved and went along with his class completely happy.

So Ben had his first Halloween parade with his class and he did great. We're so proud of him and he looked beautiful and like he had a wonderful time.

I'm hoping that over all this will bode well for tonight dressing up and going Trick or Treating! Not sure if he's going to want to stick with the Tigger costume or pick another out of our three HUGE boxes of old Halloween costumes but either way I think once he gets the hang of it this evening and realizes that he's getting CANDY at every door he's gonna be ALL IN!!! LOL!

Shmoes... pronounced "Shm-Oh-z"

Did you ever watch Toy Story II? In the beginning Buzz tells Woody that in no time at all they'll be making "piping hot shmoes" to which Woody responds "it's SMORES, Buzz." So it's "shmOz" not to be confused with a "shmoe" which the dictionary defines as a noun meaning "a foolish, boring, or stupid person; a jerk." Got it?

Well, we have shmoes in our house, or as Ben calls them "Mo's." They're Ben's SMO's/AFO's. Just what we like to call them, I dunno... it's more "homey" maybe. Makes them a little less foreign and intimidating... and Ben can say "Mo's" -- so that's all good. :)

He's been wearing them for 5 days now and he's doing okay. He's NOT a fan that much is for sure but he's adjusting. He doesn't walk quite as much like Frankenstein as he used to. He cries when we put them on and yells at us and tells us "NO!! OFF!!" and is upset but he lets us put them on him now. I've also made the deal that every time we put them on him he gets ONE Lifesaver. Yeah, not the best mom move in the world I know that but I kind of feel it's the sweet in his life to make up for the bitter of the Mo's he so despises and being a good boy and letting us put them on him without kicking and making it very difficult. If that makes me a so bad then so be it.

In good news once he's had them on for 10 or 15 minutes he rarely seems to notice them much... and I will admit I think that he's tripping less often... and you can actually see the difference when he's walking in his legs and how straight they are and not bent at an awkward angle because of the severity of his pronation. So they are helping... as much as it pains me to say it because I think I would be just as happy, if not more so, to see them go as Ben would be.

So, 5 days into this, so far so good. I'm keeping my fingers crossed that it will continue to go well and he'll just become more accustomed and they will help him the way they are intended to. Hey the best case scenario they help him avoid painful ankle and knee surgery. A mom can hope right?

LTNS - long update

I really want to start using this blog for Ben much more often. I'm going to try to be much more diligent about updating at a minimum of once a month, and hopefully more often. Just to kind of let people know where Ben is and how he's doing.

It's been a full year since I last posted. Ben's "trifecta" surgeries (tonsils, adenoids, tubes) last November went really well. He recuperated like a trouper and did great. As soon as he was healed he started eating like a horse and put on several pounds in short order, which was great news as his weight had been stagnant for quite a long while. He got some meat on his little bones and his face rounded out and went from about 25 - 26 lbs. (up and down depending on sickness) up to 31 lbs. where he has been staying for a while now. We're really happy about that. He also STOPPED snoring almost completely. It used to be that Ben would snore so loud you could actually hear him in our bedroom from his down the hallway (although our rooms do share a common wall). Once the swelling went down and the healing was well on its way Ben started sleeping SILENTLY! OMG it was unreal. I actually found it incredibly disconcerting because I could always hear Ben as he slept and it was kind of this little reassurance that he was okay... because I could hear him. When he completely stopped snoring for a few weeks I was getting up and checking on him several times a night. I know it sounds crazy but it was such a weird experience to hear NOTHING from the monitor when he had snored ever since he was a tiny little baby.

Six months after his surgery he had another sleep study and his apnea events dropped by about half! This was great news. He still has apnea events but at this point they are almost all "central nervous system" (CNS) related and not "obstructive" like in the past. The other good news was that now that Ben was getting good oxygen levels all night even his CNS apnea's decreased! YAY!! So all in all it was great news.

In February of this year we started with the testing for Ben to qualify him for the states special needs (SN) program for our town. He had to see an OT, PT, and ST, and talk to the SN teacher at the school where he would attend. It was a pretty long drawn out process, and as we already knew Ben more than qualified as a SN child and was admitted. He was eligible to receive PT, OT, and both kinds of ST (both reception and expressive) three times a week and would be attending SN class at the local elementary school Tuesday - Friday every week from the day after his 3rd birthday.

So in March we had a small party for Ben and the next day he started school. The first day was pretty rough and he cried quite a bit. The second day he took the bus and that made him much happier. He still wasn't thrilled about it at that point but honestly he adjusted amazingly fast, IMO, and did great. Within two weeks he was actually excited on his school days and would wake up and tell us "Bus!! kool!!" (Ben for "school"). We didn't really see a lot of improvement in him to be honest, but we figured he was getting the therapies he needed and that in time we would see some kind of change in him.

The rest of the school year passed relatively quietly and calmly with no major goings ons. The kids were all well, Ben was doing well albeit fairly stagnant developmentally and life was okay. He was actually sleeping well for the first time in his life too (thank you trifecta surgery!) and I think that helped a lot with his overall disposition.

Summer came and Ben LOVED being outdoors as much as he could. I kept him coral led on the deck most of the time but he was out on the deck A LOT and playing with toys and water and his new teeter-totter that he and Patch got as a gift for their birthdays. He loved swimming in the big pool when he was able but was also more than happy to entertain himself playing in the baby pool on the deck with Kit. It was all good. Ben had several weeks off and then started the summer SN program that the town offers. He went T & Th from 9am until noon and while I don't think he liked it as much as his "regular school" I think he had fun and he was happy enough to go off on the bus in the mornings. He would come home exhausted and covered in sweat but happy and trying in his way to communicate with us about his day. He was still getting PT, OT, and ST twice a week so it was good for him. He was also actually learning a lot more signs over the summer and was using them regularly at home. His new favorites were -- wait, dirty, sorry, shoes, and he learned how to sign his own name by making the sign for the letter "B" and brushing it up against his cheek! He was SAYING HIS NAME for the first time ever!!!! We thought that was just totally cool.

Kit's birthday rolled around in August, the day after mine of course, and it was a really nice time. The weather was wonderful, the kids were all happy and carefree, Ed took some time off of work for our birthdays and we spent time as a family. For my birthday Ed had pictures of the kids taken which was the BEST present EVER! This is the best one of the bunch, IMO, to the left. I love this pic. Big looks so big and grown up to me. We took the little ones to Build-A-Bear so they could have stuffed animals with the same birthday as their baby sister. We got pictures of Kit done. We all went out to lunch and that was really nice and a huge treat since we so rarely actually go to a restaurant to eat. All in all it was just lovely. Oh and Kit started walking at 11 months old in July and truth be told Ben was NOT very happy about that. For several weeks every time the baby stood up and walked Ben would go over and push her down and yell "NO!!" at her as he waggled his little fingers her way. I think he didn't want her walking and "catching up" to him in that way and he was trying to make it very clear to that cheeky little girl that she is the BABY and he is the toddler and to just get over herself and STOP that! LOL! After a bit he adjusted though and in truth I think he loves that she walks now because they've kind of become little buddies since then. She's not just a little tiny baby that can't do anything anymore and they are having more fun playing together. He's still very possessive over certain toys of his that he doesn't like to share, but then there are toys that he's okay with sharing... so it all works out in the end.

School started up again in late August and Ben seemed ready to go back. We went to the open house the day before school started and Ben seemed absolutely THRILLED to see his old classroom and old teachers again. He was absolutely BEAMING when we walked in and immediately took off like a shot away from us (yes OUR Ben!) and ran to start playing with the blocks and trucks. He was in heaven and since Ed and I were there he was actually TALKING to us... much to his amazed teachers who tried to hide behind us so that they could actually hear Ben talk, since he almost never does in the classroom. They were all amazed at his vocabulary and his ability to talk. Mind you Ben still was speaking in only one word utterances but he has/had a lot of words and would talk to us and use words and signs together to communicate. His teachers were really impressed :) The next day he happily got on the bus and he was off.

School this year has made a big difference for Ben that we can finally see. Well, I think it's school and the fact that Ed and I have decided to make some changes in Ben's routines to help him along. Like we started becoming much more vigilant about reading to him EVERY single day and while in the beginning we kind of had to force him to sit through an entire book he now LOVES reading every day. We even enlisted the children to help in this new reading project with us and the big kids all read to Ben almost every day too. Then one day in September his ST send home a list with Ben of probably about 300 words or so and asked us to circle all the words that Ben could say and write in exactly how Ben says them. So I went through the list carefully doing that and when I was done I realized he had circled probably 80% of the words on the page. Then I also listed other words not on the list that he can and does say with regularity. I mentioned that he can say the names of ALL of his brothers and sisters, and several other miscellaneous words that he uses. His ST was really impressed with the list and that day in ST she sat down with him and started talking to him about his brothers and sisters and she got him to say ALL of their names for her. Then she showed up cards with pictures of animals and Ben named five of them for her! After that she let him pick a toy out of their little "treat bin" and Ben picked a little yellow ball. He walked with his ST back to his classroom and showed ALL three of his teachers his new treasure and told them in a loud confident voice "BALL!!!" That very same day as they put Ben on the bus to come home he turned to look at them after climbing the stairs and waved and said "Bye-bye!" This was absolutely positively ENORMOUS for us. Ed and I read the note from his teachers with tears running down our faces. It was a huge step forward for Ben... and it was only the beginning.

Around mid-September or so we saw another huge development for Ben that had us so over the moon happy we could hardly contain ourselves. Ben started out, hesitantly at first, putting two words together for the first time in his life. He started saying things like "oes (shoes) off" and "me too" and "mama come" and all sorts of things. It was incredible. Over the course of a few weeks it went from something he did sporadically and not often to something that at this point is happening many times a day every day. Last week for the first time EVER he actually put three words together! He said "Daddy hit head" -- he was telling Daddy that he had hit his head on the wall. We were all so excited that we just started hooting and hollering... Ben was pretty proud of himself and beamed his beautiful smile at us.

In other big news our Benjamin-Boo started sleeping in a big boy Ben in early October! We moved Patch up to the top bunk in his room and tried to get Ben to sleep on the bottom but he didn't like that idea. So Daddy asked Ben if he'd like it if we made his bed into a "big crib" and he got the old railing from the girls bunk bed that they don't use anymore and put it on the lower bunk. Ben was SOLD at that point and started calling it HIS bed right away. He slept like an angel all night in his bed that first night and has slept there ever since without ever looking back. He is also very proud of himself and will tell people "big bed" and then he'll say "Pash up, up, up" which is Ben for "Patch sleeps up above me!" LOL!

In more verbal leaps forward Ben just last weekend went from calling us "mama" and "dada" to saying "Mommy" and "Daddy." He has always called us mama and dada from the time he was little and we have always refer to Mommy and Daddy when we talk to him, and that's what the other kids call us. Well last Friday it was still mama and dada but by Monday morning he had switched completely over to Mommy and Daddy! More totally awesome news. Not only is it a cognitive understanding that that's what we call ourselves and that's what the other kids call us (well, Kit still says mama and dada of course) but it's a leap in his verbal skills because now he's not merely repeating the same sound to make a word, he's using different sounds to form a two syllable word! It's BIG!!! We could not be more happy. Oh... well... and I guess I should mention that this weekend also came Ben deciding to refer to Daddy as "Ed" occasionally. Now he'll be standing in the family room and holler "ED!!!" into the kitchen. It cracks ALL of us up. Cognitively that's also big though because now if you ask Ben "what is Daddy's name?" he'll tell you "Ed!" very excitedly. It's realizing that Daddy has TWO names, one that Mommy calls him and then what the kids call him. He still says that my name is "Mommy" but that's okay with me! LOL!

That brings us to now. Just this Monday Ben got new SMO's (special molded orthotics) for the first time in about 18 months. We had tried to see how he would do without them but he was basically slowly destroying his ankles and knees so the physiatrist said it was time to give up the ghost and get him some new ones. Ben was an absolute trouper picking them up and getting them on for the first time. He didn't cry and he was very good about letting Gordon put them on... but he had his little "nervous smile" on and when we put him on his feet he was pretty scared. He took some tentative little tiny steps and fought tears off as best he could as he shuffled slowly around the room. Just as we were getting ready to go I saw that "I'm going to cry right now" look pass over his face and I scooped him up and held him and told him it would all be okay. He seemed so relieved to be in my arms, it was so sweet and yet so heartbreaking all at the same time. I held him while we got ready to leave and then put him down to walk once we were out of the office and in the hall and he actually seemed okay with it all. Still walking a bit like Frankenstein and looking "worried" but all in all he seemed good. We picked up his oldest brother and sister at the bus and decided to go to McDonald's for a little treat for Ben for having such a big emotional day. If it had been any of our other children we would have gone for ice cream but Ben doesn't eat ice cream!!! So we went for french fries instead :) Ben did great and walked around and had fries and was pretty happy. He and Kit wandered around a little and it was all good. Everyone was happy... until we got home. The minute we walked through the door Ben started crying "oes off!!!" over and over. I took them off and his feet were all sweaty from the plastic and red from the pressure but nothing too bad.

Ben is still not overly thrilled about the SMO's and usually cries when we put them on him. Yesterday he cried for about 45 minutes while begging for me to take them off. It broke my heart into a million pieces but I kept telling him no, that he had to wear them. It was hard. I mean really hard. I was to the point that I was wondering if we should call the physiatrist and just tell him that we had to do something else because this was never going to work. Finally Ben got distracted and started playing and then he went on to wear them for almost 3 hours without complaining again. I was so proud of him.

This morning we put them on for him to wear to school for the first time and while he was again unhappy about putting them on he didn't really cry as much and he adjusted quickly and went off to school with them for the first time. His teachers say he did well with them and his PT says that she thinks that they are doing a great job of keeping his ankles in alignment and correcting his pronation. He DOES need longer socks now though because his SMO's go above the socks and they cut into his little calves a little bit. Still I think he's doing great and tomorrow I'm going to go out and buy some socks and hopefully all will be well and he'll adjust to them and they will help him with his coordination and stamina (since he won't have to work so hard to maintain balance now). We have our fingers crossed.

Oh and I almost forgot to mention... Ben has started art therapy at the local art studio in town. The wonderful and amazing people that own the studio gave Ben a scholarship and he started last week... and he LOVES it! I mean he really really really loves it. He was so happy and was so overjoyed. I swear he had this look of complete bliss on his face like I have never seen. I think that between the art therapy, which he did clay his first week, and having Mommy all to himself he was just on cloud 9. I have to admit, I think it did wonders for me too because I had a truly wonderful time working with Ben and his teacher and being with just him without the other kids to worry about. It was a little slice of heaven for the two of us. Can't wait for next week when he goes again!! To the left is a picture of Ben having just gotten back from his first art therapy class! You can see it all over his face how much he loved it! LOL!

So basically Ben seems to be in a developmental explosion. He's talking more. He's sleeping in his own big Ben. He's playing independently more and is more interested in things like coloring and play-doh. He's just changing. He's not so much the little fella that we need to baby so much and he's wanting to do more and be more and be his own person. He wants to gain some independence and find ways of communicating better with us. It's an amazing time to be Ben.

Then I just wanted to throw this picture in because I couldn't resist. This is Ben's "nervous smile" and I just love it. He is such a beautiful boy.