The Birthday Boy

Ben turned four years-old yesterday. Four. How did that happen? I know it's a tired old thing that all mothers say, but it's so true. I guess that's why all mothers say it huh?

In some ways the past four years have dragged with Ben. It's not been an easy road for him or for us. We had some really hard difficult times, and some really superb amazing times too. So many changes in just four short years. I was in HS for four years and that flew by. The first four years of being married is a blur of happiness and joy that went by in the blink of an eye. The first four years of Ben's life have been a gift but one that has come with a high price at times. It's always been worth it, every minute of it. So I wish I could say that the years have flown by but they really haven't. I am still amazed that he is four years-old though. My little guy is getting bigger and bigger.

Ben had a WONDERFUL birthday. This is the first year that he really GOT it. He got it that it was HIS birthday and that it was a really special day and that he was the center of the universe for that day... it was all about him and he was loving it... I mean seriously just over the moon happy. It was so awesome to see him like that. He kept saying "My buffday" and talking about presents and saying he was going to have HIS cake. It made my heart sing with joy to see him so filled with joy and happiness himself. When we first got up in the morning I asked Ben how old he was and he beemed with pride and yelled "FOUR" and he held up four little fingers. Yeah... those are the moments that make life worth living.

We got Subway for dinner because as luck would have it the McD's in town is temporarily closed for renovations. Ben likes Subway too and loves that he can get BBQ chips so he was fine with that. We even let him drink soda . He picked out chocolate cake with chocolate frosting and I made that for his special day. We had our dinner and called Nana on the phone and did a video conference so she could see Ben on his big day! Then we did cake and presents and Ben was overjoyed. He got a TON of Lightning McQueen toys and some fingerpaints and a movie (Space Chimps). He also got a Spiderman 3-wheeled scooter from Nana and Granpa that he is totally in love with. He was very very happy with his haul :)

I let him stay up late last night and he cuddled up against me with his new plush Lightning McQueen that says things when you smash him on things and we talked. I told him about the day he was born and how they had to take special care of him and how I finally was able to go see him late and night and they let me hold him. I told him about how I held him and kissed him and put his cheek up to mine so he could feel me close. I told him about how I nursed him and burped him and we both fell asleep skin to skin with him feeling safe and loved. Then I told him that the nurses told me I had to put him back and how that made Mami feel sad... and he stroked my cheek and said quietly "me too." It was one of those amazing moments you never forget I think. I know he didn't really understand the whole situation but he understood that him being away from me made me sad... and he knew the idea of it made him sad too. I love that boy so very much.

He stayed in my lap for a long time until Daddy told him it was WAY past his bedtime it was time to go to bed. He said to Daddy "No, sleep on Mama. Buffday." He wanted to sleep with Mama... it was his birthday after all. Daddy didn't fall for it and Ben went up with his plush McQueen and fell asleep within seconds he was so worn out after his big day.

It was a very good day. It was a great day. A really great day.

Ben, 3/24/05

Ben (and all his sibs), 3/24/09
you've come a long way baby!

New IEP

Ben's turning 4 years old this month. Wow. The time goes so fast in some ways... and achingly slow in other ways. So at the end of the month my little fella is gonna be four. Amazing.

Today was our PPT meeting to discuss Ben's new IEP for the upcoming year, and to go over his IEP from last year and see what goals he met and which ones he didn't. I always dread these kinds of meetings, I don't have a thick skin where Ben is concerned... I wonder if I ever will. So I was nervous but hopeful this morning as we managed to get six kids up, dressed, fed, cleaned, and out the door by 8:10am.

The meeting went well I think. Kit, fortunately, was an absolute angel. She was a little intimidated by the fact that there was a "school staff" person, Ben's classroom teacher, and 3 therapists (PT, OT, ST) all in the room so she clung to Mami and before I knew it she was sound asleep on my shoulder. PERFECT!!!

Anyway, Ben.... his teacher wrote up a report on what his days are generally like. Going from when he arrives on the bus to putting his stuff away to circle time to specials to playtime and all through his day to the point they put him back on the bus to come home. I really enjoyed that. I had a general idea of what Ben did in school all day... I know that he gets there and hangs up his coat and puts away his snack and hangs up his backpack (his NEW Lightning McQueen backpack!) and that they did circle time and sang songs. I know what days he has what specials for the day (gym, library, art, music, etc). I know that he has PT, ST, and OT on different days and some days with another little boy and some days w/o. So I basically knew but it was wonderful to have it all spelled out on paper and hear his teacher tell me how Ben participates and what he can and cannot do and how he's doing more and more. It was wonderful to hear that he's playing with the other children more and interacting with them. It was wonderful to hear that he plays with the toys now and gets involved and LOVES to "get silly" and roughhouse a little bit from time to time. It was AMAZING to hear that he actually sings along to some of the songs they do during circle time (because I can't ever get him to sing along with me at home, he'll only do the finger-plays). It was good for me to hear that he can do things that I didn't know he could do and that he's more capable than I give him credit for maybe... and that maybe Mami needs to learn to push him a little harder. The best part was hearing from his classroom teacher that Ben is, in her words, a JOY. That is what brought a tear to my eyes. To hear her say what a love he is, and how loved he is by the other children, and how he loves to hug and smiles his huge welcoming smile when his therapists come into the room... and how he's so well behaved and so "game" -- he never says no... he never stops trying... he never gives up and he's always willing to at least try when his teachers or therapists ask something of him. I mean... just WOW. That was my moment when it felt like on this bitter cold March day the sun came out and warmed my soul and my spirit. It felt GOOD... I mean really really good in a way that I can't even begin to describe. Imagine the best feeling you've ever felt... then multiply 10 fold. Yeah, that's the stuff.

Ben's ST is thrilled with his progress and told us that he is just making huge leaps in his verbal skills and his ability to communicate. Not news to us. We knew that. We have been impressed time and again lately with his ability to communicate with us and talk to us. It's nice to have a professional back up what we're seeing day to day, but it wasn't news... it was just nice to have acknowledgment of Ben's hard work and perseverance.

As for OT and PT it also wasn't big news for us but it wasn't as good news. Ben is always moving forward, slowly, very slowly... but always forward. His PT and OT both feel that while he's not progressing as fast as they'd like to see they see that he is always trying and is learning the routines and is moving at his very own "Ben-Time." So they'd like to see him doing more but that's okay... heck Patch and Gregory were "typical" kids and when it came to physical things they were both way behind. I figure between Ben's brain injury and simply the fact that he is OUR son the physical stuff will come later. I'm okay with that.

Ben is being recommended for the summer program again this year. I have mixed feelings about it but admit that it is probably in Ben's best interest so he'll go. Next year he'll start the 4 y/o program and he'll be going to school in the afternoons 5 days a week instead of 4 mornings a week like now. Again... I have mixed feelings about that but will of course do it for Ben knowing it's best for him. I think I'm gonna miss that little goober like crazy though.

Ben's moving forward. Always striving, always fighting, always persevering and working hard. I am in awe of that little guy. My baby boy is turning 4 very soon.

Ben loves "Queen"

Not much going on with Ben really, but wanted to update since it's been a while.

Let me think what's been going on with him lately. Well, he's been speaking in three word sentences more and more often. We're REALLY impressed with that. Now when he comes home from school it's not uncommon for him to say "shoes off please" -- he likes to get out of his braces ASAP when he comes home! He really doesn't like those things... they're HOT... I can't imagine how he's going to manage in the summer with them. I'm going to have to talk to his Physiatrist about that. Other three word sentences are becoming more and more common too. It's very exciting for us. He's still doing his consonant deletion thing, but I think that will come along in time. He still says "en" for "Ben" and that sort of thing... however I noticed yesterday that he's gone to saying "it" instead of "kick" for Kit. Very interesting development I think.

After a week out of school being sick and finally going back he's doing great. His teacher sent a note saying he seemed thrilled to be back. He's also thrilled to come home. Yesterday when he walked in the door he said "ME HOME!!! YAY!!!" and cheered and jumped up and down! LOL! He's such a funny little fella.

Ben and Kit are becoming closer and closer these days. They're really getting to be very buddy buddy. Yesterday Ben was crying about something, I don't remember what, and he looked up and told Ed "BABA!!!" (our word for pacifier here) and just kept crying. Kit went over and found one for him and walked up to him and said "EN!!!!!" (Ben) and shoved one in his mouth! I thought it was hysterical that she knew what he wanted and went and got it for him... and then was very insistent that he take it! LOL! Ben can still be a little overly rough with her from time to time but I think he just doesn't understand that he weighs probably 50% more than she does. LOL! It's all very cute though. They give each other hugs and kisses, they share baba's, they play blocks together. I'm really loving it.

Ben has become completely addicted to the Pixar movie "Cars." Holy cow he's driving me crazy with it. I think we watched it about 5 times over the weekend and then twice since then. I'm starting to hear Lightning McQueen in my dreams!!! ACK!!! In good news though he LOVES his "Queen" (how he says McQueen) bedsheets so that was a Christmas hit :) LOL! I also just ordered him Lightning McQueen and Mater plush toys for his b'day which I'm sure he will LOVE. If he can sleep holding on to his precious "Queen" I think he'll be on cloud 9. In a way this is a really great development too. First he's watching TV, which is huge. He's never really done that before. He'd sit for 3 minutes of Sesame Street (or "Elmo" as he calls it) but never really watched. We have always suspected it was because his eyes have trouble with the 3-D-ness of TV that is really only 2-D. So he was never really into it. The fact that he is now is a sign that his eyes are actually doing really well and developing, so that's great news. Also he's become attached to a character and a movie and he knows the story and how it goes and he can anticipate it and appreciate it. It's so cute, during the race scenes he'll actually jump up and down and scream "GO QUEEN GO!!!" at the TV.... just adorable. So I'm happy with this new development even though I've seen that movie so many times it's making me ill! LOL!

Oh and speaking of eyes, Ben's eye is back to being droopy again :( I was hoping that it was better after the holidays and that would be the end of it. Now for the last 4 days or so it's been SUPER droopy again. Blech. If it's not looking better by Friday I'm going to have to call the Ped. Opth. Surgeon again... . Keep your fingers crossed for us that it improves again QUICKLY!!! Any prayers and/or positive thoughts would be appreciated.

Busy Ben Update

Hey, I've been meaning to update on Ben's eye and other stuff for a while now. It seems that there just aren't enough hours in the day though.... well that and it's just been very crazy here lately with sickies.

Update on the eye... things are actually doing well I think. Getting back into his normal routine and his normal napping/sleeping schedule and NOT having his fun big sibs around to play with and wear him out seems to have helped. From the Monday everyone went back to school his eye started looking better. I spoke to his teacher the day after his eye appt. and asked her to please just write a quick note in his little book every day just to let us know how his eye looked at school. So far we've gotten all good news that it's looking typical for Ben and so that's great. I've noticed the same at home so it's a big relief.

Then this week Ben went to school on Tuesday (he doesn't have school on Mondays) and he was home sick the rest of the week with croup. He could have gone on Friday but we kept him home with the "better safe than sorry" take. So when he was REALLY sick his eye was droopy of course but as he got better that lid went back to it's normal position for him. So that's good too. So at this point I'm thinking that it really does look like we'll be able to avoid surgery at this point. I think that when his schedule gets thrown off he was more tired and worn out so his eye was droopy, and now it's fine again. Thank God for that. I truly feel like we dodged a bullet with this one and I can breath a huge sigh of relief and cross that off my list of things to worry about... for now.

As I mentioned Ben was home sick much of the week with croup. We went the whole steroids and nebulizer route and it worked thankfully. He was REALLY sick and pulling for two days but he cleared up and he's fine now. As it turned out Patch was also home sick most of this week with strep throat. Ben LOVED being home all week and having Patch here too. Those two are as thick as thieves these days... although Ben still has that amazing little brother ability to really annoy his big bro sometimes! LOL! Very typical I'd say. Still it was a joy to see them really enjoying spending so much time together. Also I'd been noticing all week that Ben was really talking a lot. Mostly in two word utterances and occasionally three but it just felt like he was talking more than usual.

So......... on Thursday night I was thinking that I should send Ben and Patch both back to school the next day. Was figuring I'd see how Ben did overnight with his cough (and Patch with his throat) and if he did well send him on his way. So he was just sitting on my lap watching TV and I paused the TV and said to him "Ben you ready to go back to school tomorrow?" At which point he looked at me aghast and said "No!! No. Me sick. Home. Me Home. No Bus." He paused for a little bit and I could see he was thinking and he said to me "Patch sick too. Patch home. No bus too." -------- O..................M...................G!!!!!!!! That's the most that boy has ever put together as a coherent conversation in his life. He was having a whole conversation with me... he was stringing together thoughts and idea's and communicating them clearly!! I was so amazed I very nearly started crying but I didn't... I held it together. I told Ben what a GREAT job he had done with using his words and told him how proud I was of him and I swear he lit up the room with this amazing smile that clearly showed that he was also really proud of himself. It was an incredible and indescribable moment. I felt like for the first time Ben and I had a conversation. Add another check mark for another "best moment ever" with Ben.

I've been trying to explain to people for a long long time now that Ben understands ever word that people say to him and not to assume that because he doesn't speak well means he doesn't understand, because that couldn't be further from the truth. Now here he is, expressing complex thoughts and idea's and communicating. He knows that sick = no school. He knows that if he tells me Patch is sick that means no school too and insuring a playmate for him. He's also learned the very typical act of "playing sick" to get to stay home. I'm SO proud of him. I don't think he will ever stop amazing me.

Eye Stuff

So we saw the Pediatric Ophthalmologist (surgeon) today. I really love this Dr., he's wonderful with Ben, he's very good at what he does and he comes with great references. We had a great experience with him when he did Ben's surgery back in 2005 (when Ben was 9 mos. old) for his strabismus and nystagmus... and he did an awesome job. Ben's eyes are still dead on straight and I have never seen them shake again since the surgery. We trust him. We think he's very good.

So anyway, we saw him today and I mentioned that in many of the pics I've taken of Ben lately, and I've been taking many all through the birthdays and holiday season here, I've noticed that in MOST of them his lid is completely covering his pupil :( Not good. His eye actually looks fairly good today, the lid covering about half of his pupil, which is good... but lately it's been much lower and a cause for concern. So we talked about that a bit, he put Ben through his paces and Ben was a bit more cooperative than he has been in the past. It's not really that Ben's trying to be uncooperative when he sees the Dr., because he's VERY accustomed to Dr.'s and Dr.'s offices and all that stuff, he never cries or gets upset (not even when they take blood) but he does get very shy and reserved and quiet. So the Dr. asks him to do something and Ben will just sit there because he's shy. Today I kind of got him moving on things and he was able to point to the things the Dr. asked him to point to and do what was asked of him. Ed and I were both REALLY proud of him.

At this point the Dr. says that Ben is seeing 20/20 out of both eyes, so that's great news. He is very concerned about the greater droop though and mentioned that to him it looked slightly more droopy today but that he suspects, from what we told him, that he was just catching him on a good day. So now we are heavily weighing our surgery options. Something that is even hard to type much less think about. It's a scary situation really.

We have to chose to wait on the surgery, and hope for the best, or do it now. With this particular surgery there are two ways to do it, and the preferable method that will look the best and work the best functionally, it's better to wait until the child is at least 4 and preferably over 5 y/o to do it. They have to cut a muscle to get the eye to lift and the results are better when you're working with a larger muscle and a child that is more able to fully cooperate to get the most accurate measurements possible prior to surgery to know exactly how much to cut. So the surgery that would be the BEST is best done on children older than Ben. The second option is a "sling" surgery and basically makes it possible to control the height of the eyelid by using the eyebrow muscles. It involves more scarring, the eye would never close properly again (possibly requiring the use of eye drops several times daily for the rest of his life), and the end result will not look as "normal" as if they do the first kind of surgery (the levator surgery). So the obvious choice seems to be to WAIT on the surgery of course.

However that comes with risks. If we chose to wait and Ben's eyelid interferes with his vision too much his brain will eventually just turn that eye OFF. Yes. That's what I said... turn it off. So if we wait too long he will lose his vision in his left eye, for the rest of his life. Once the brain turns it off, you can't turn it back on again. That will be it and there will be nothing we can do about it. The Dr. is encouraged in that Ben knows all the "tricks" to getting the best use out of his left eye that he can right now. He lifts his eyebrows very high when trying hard to use that left eye, he tilts his chin up so better be able to look UNDER the lid (and Dr. mentioned that he does have a "higher head tilt" than he'd had so another reason to think that his problem is getting worse). He's got this whole how to make the eye work thing down pretty well. So that's all GOOD. It's good that he knows how to get around it, that he's learned how to get the best function out of that eye that he can. He's smart, he's figured this all out on his own and he's finding his way around his issues. He's amazing.

So the question is... what do we do? Do we do the surgery now, with the possibility that we're maybe "jumping the gun" a little bit out of concern for protecting his vision in that eye? Do we wait and hope and pray that he'll continue to do his tricks and figure his way around things so that we can make the choice for the better surgery in the next year or two? Do we risk his vision in that eye for a possible better cosmetic and functional result? Do we go with the "not as good" surgery because we're afraid he'll go blind in his left eye permanently? What? What's the RIGHT decision?

I don't know. Ed doesn't know. The Dr. doesn't know. In the long run there will be no right or wrong decision, just the decision that we make with Ben's best interests in mind and in our hearts. We will have to chose at some point and that will be the decision. Not the right decision, not the wrong decision, just the decision that was made and it'll be too late to turn back and no time for "what if" and we'll move forward. Just like we always do where Ben and his health issues are concerned. It doesn't make it any less scary though. It also doesn't make it easy.

Reyes and Hair

Yesterday we celebrated 3 Kings Day. Three Kings is actually on Jan. 6th but G & E are both trying for perfect attendance this year and it's just been so overly chaotic at our house of late that we put if off for the weekend... first time ever. Ben had a wonderful 3 Kings and got a tricycle that he just thinks is the coolest thing EVER. He loves it... hasn't gotten the whole pedaling thing down yet but he gets the idea and I'm sure he'll get the hang of it before we know it. He was just a happy fella yesterday over all though. He "helped" Gregory and Patch play a new video game. He road his little trike... pushing his little sister off of it frequently. He played with blocks. All in all, a truly great day in the life of a three year-old boy. It was a good day. Exhausting for the old folks, but a really good day.

Then today I'd just had enough. Patch has been looking absolutely RIDICULOUS for weeks now and getting worse with each passing day. He has hair as thick as a tree truck and as course as tree bark and so when it gets overly long he looks like he has a big nasty mop on top of his head. Ben's hair was also just WAY too long, but Ben's hair is baby fine and he doesn't have a mountain of it so when his hair gets long really it just looks a big disheveled but not horrible. Still, I'd had ENOUGH and couldn't take it another day. So I made Ed cut their hair... because I've been saying for months to take them to the barber and Ed keeps saying "No, I'll cut it" so today I told him to put his money where his mouth is. I also told him that if he did a hack job of it I would be VERY displeased.... mwaaahaaaahaaaa (practicing my evil laughter). Here's a pic of Ben from our celebration yesterday (wearing all clothes that our friends sent for Ben!) so you can see Ben's long hair. Not too bad really IMO. I mean longish but not horrible. The part I dislike most really when his hair gets long is how it covers his ears, everything else I'm really okay with! LOL!

So Ed undertook the task of haircuts. His brilliant plan included putting our kitchen chair with booster seat in the family room right in front of the TV to "distract" the boys while he cut their hair. I just smiled and nodded and told him it was up to him what he wanted to do. Patch was pretty good really. No complaints to speak of and he sat ALMOST still.... well, I say almost... let's just say as still as you can expect Patch to sit. Then came Ben's turn. Before Ed even got out the scissors or the buzzer Ben was beside himself crying and hysterical. Big juicy tears fell from his eyes and down his round little cheeks... causing the freshly cut hair to cling to his face and get in his mouth. I tried talking to him, I tried holding his hand, I tried calming him, I tried bribes and promises of treats AFTER the haircut was done. Nothing worked, he was just miserable our poor little Boo.

Finally it was done and bath... with BUBBLES was promised and that seemed to make everything better. Well, okay fine that AND a big huge lollipop. All was right in the world again and he was happy and clean and looking spiffy. I was completely taken aback by what a big boy he looks like now though. Where did my baby go? Who is this big boy? Made me a little emotional to see him looking so big. Gosh, he's so beautiful though. He has that smile of his that lights up my whole world.

So here's our boy, well coiffed and ready to roll. Not a baby anymore for sure.

Nothing much about nothing really

Not much to post today. Just wanted to get in here and start off the new year and say that we're still here :)

Ben had a great Christmas and I think he was very happy with his gifts. He got a new toy shopping cart to share with his little sister and play food to go in it, that really seems to be the biggest hit.... the problem being that they do tend to fight over the cart a bit... and I'm not getting another one to further clutter up our already over cluttered family room. They're going to have to learn how to share.

Ben loved having time at home and new toys and siblings around ALL the time. I think he thought that the sibs being home to play with him was the best part. He did miss Gregory quite a bit while he was gone on his trip but he did manage. Ben asked for him several times and one night at dinner was VERY insistent that Gregory was in the bathroom and would be out later. When he got down from the table he ran to the bathroom and his little face fell when he saw that Gregory was NOT in there. My poor little woobie. He was THRILLED when G came home though and ran around the house yelling "EGG HOME!!!" and pumping his fist in the air saying "YES!!!!!!" It was adorable.

Ben seems a little sad today that all his big sibs are back at school. This morning he made another GREAT sentence and said "Momma where did Patch go?" So we talked about him being at school and how Ben would be going back tomorrow (probably) and that break was over and it was time to get back to normal. So for the next 30 minutes he went through all the kids "Patch go?" "Tesh go?" "Mimi go?" "Egg go?".... it was pretty cute. So we made it into a game and I would tell him "Tessa went to store" and he would giggle like crazy and scream "NO MOMMMA!!" and then I would say "Patch went to the POOL!" and more peels of laughter as he yelled "NO!!!" and on and on the game went. He was so sweet.

So tomorrow is maybe, maybe not. We may keep him home for 3 Kings... not sure yet... some of the planning fell by the wayside this year and so we may have to postpone 3 Kings until the weekend! EEEEK! First time ever. So we shall see. Either way I'm sure he'll have a lovely 3 Kings too :)

All is well in Ben's little world. He just keeps on truckin'

The Day Would Come

It's been a long journey with Ben already at only 3½ years old. It's been a hard road for him and a difficult journey for our entire family at times. Then we get these gifts. These incredible moments of pure unadulterated joy and bliss. Moments when the entire family celebrates and screams with peels of laughter and happiness for Ben... because he is so incredible and amazing and he awes us all with his determination, strength, and perseverance.

I have long wondered if Ben would ever really speak "properly." If he would ever communicate well and effectively and speak in sentences. He has been putting two words together for a few months now, and every once in a blue moon he'll put three words together and shine us that million dollar smile to show us he knows that he did something special and how proud of himself he is. Still, I wondered if they day would ever come if he would talk in sentences.

The day would come.

Today, just this morning, Ben spoke his very first complete sentence. He said five words. FIVE. All together. Nobody prompting him or asking him to repeat -- not that he's ever put five words together under those circumstances either mind you -- but he just DID it.

This morning he happened upon a package of candy canes that Daddy bought to decorate the Christmas tree with. Ben, with his magical 6th sense when it comes to all things candy, immediately brought them to me and started saying "eat. eat. eat. eat candy" (and doing the sign for candy at the same time). I told him no, that it was time for breakfast and there would be NO candy for him at this time of the day. So off he went to have some breakfast and get on with the day. In the meantime I hid the candy canes figuring that this year decorating with candy might not be the best idea with both Ben and Kit in the house -- our little candy mongers. After he finished he came up into the family room and started looking around. I watched him because it was obviously he was looking for something specific and I was wondering what it was. After a few minutes Ben held up his little hands in the classic 'I don't know' position (hands by his head palms up) and said "Where da candy canes go?" -- as clear as a bell. I was so completely stunned by what I had just heard that I just looked at him in stunned amazement and muttered "what did you just say?" and Ben repeated himself "Where da candy canes go?" At that point I screamed to Ed in the kitchen "DID YOU HEAR WHAT HE JUST SAID!!!???" and the wild rumpus began. We all sang and danced around Ben in a circle with Ben in the middle clapping his hands and beaming that million dollar smile of his and looking so proud that I thought not only would my heart burst from my chest with pride but his would too. We all laughed together in that blissful joy I spoke of earlier and just relished the moment. The moment of Ben's huge accomplishment and major step forward in life.

This is huge. I mean just enormously, gigantically, colossally, tremendously HUGE. The day came and it was amazing. I know how much harder Ben has to work and has to push himself and strive for the every day things that other people take so much for granted and think of as such simple little things. I know that it takes a herculean effort on his part, and he's only 3 years old... and he never gives up... he never stops trying... he never gives in... he perseveres and gives it everything he's got and he DOES IT... he does it all... in Ben time... beautiful, magical, wonderful, amazing Ben time.

He's My Son - by Mark Shultz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

Can You hear me?
Can You see him?
Please don't leave him
He's my son
~~~~~~~~~~~~~~~~~~~~~~

He's my son. I play this song all the time. I mean ALL the time. I've played it so often I worry I'm going to wear it out. All these many times I still cry every time.

Do you hear me? Do you see him? Please make him feel alright. He's my son. He's my world. Make the world an okay place for him. Please?

Benjamin, day 1

PTC update! Sorry so late.

I meant to update the very day of Ben's PT Conference. I mean to update the next day, but life with it's frenetic pace usually has a way of slipping through our fingers... as is OH so common here. I know I'm saying this sort of thing all the time, but life with 6 kids is so often comletely outof hand! LOL!

So the amazing, wonderful, incredible, joyful, completely awesome news... Ben's PT Conference went so great it was unreal. I walked out bouncing and skipping, feeling like God was smiling down at me and shining joy straight into my brain. Seriously. Just wow. Actually I was so completely high after his conference that as we rushed across town to go to Tessa's PT Conf. at a school that both Emi and Gregory have been through already I missed the turn! Ed, sitting beside me with a huge grin on his face, chuckled quietly and said "Hard to read the street signs from up there on cloud 9 huh?" Oh he was so right.

Basically I'll try to give you the gist of it a full month late. Ben's teachers all simply adore him. They say he is the sweetest and most loving little boy they've ever met in all their years (and most of them have been teaching SN kids for 20+ years). They said that he's actually TALKING in class more and more often and his volume is starting to go up to a regular level instead of whispering everything. They said he's playing with more toys and venturing out on his own more and just in general seems to be feeling much more secure, enough so that he's venturing out of his comfort zone and doing more. It's a great sign that he's more comfortable and at ease and feeling safe enough to do new things and try new things. It's huge. He's working on his coloring and getting better at using scissors. He can drink out of a "big boy cup" better than a lot of the kids in his class, even some of the typical ones. He's just doing wonderfully.

His PT, OT, and ST that all came to Ben's conference were awesome too. It was great to sit down with ALL of them and talk and touch base. They are all thrilled with Ben's progress. We talked about the fact that he can jump all by himself now and what a huge thing that has been for him and how proud of himself he is. We talked about the games they play with him and the activities they do and how it's all helping him.

His ST does this game with him when she picks him up at his class as they walk to the ST room Ben will yell "STOP" or "GO" as they go getting louder and louder (because they've been trying very hard to get him to talk more loudly in school so the teachers can understand him) and she said he's doing great with that and that now by the time they get to the ST room he's YELLING stop and go as loud as he can and that's actually a good thing.

His PT and his OT both said he still has a great deal of trouble with fine motor skills, but that's neither surprising nor upsetting because we know this about Ben (heck Gregory's fine motor skills were crap for years and he's perfectly typical. LOL!). He's doing great with their activities though and he's loving it. Every Friday in school they have an obstacle course that the PT does with the entire class, even the typicals, and she has found that if she introduces Ben to it early in the week and lets him get some practice in he can actually be the one to show the other kids in his class how it's done and do it first so they can watch HIM do it. I mean..... WOW!! I have to admit I got tears in my eyes over that one. His OT also lets him do the course once or twice during their visits during the week and that's just helping his confidence and self assurance. It's ALL good.

The one thing that blew my mind was that near the end I mentioned how I know that Ben is well behind his peers developmentally but that we're all so proud of him and think he's doing great and know that it's becuase of his teachers and therapists hard work and dedication. Then Ben's main teacher said "He's doing great. He just does things in Ben Time" and that got me too because that is a phrase I use myself ALL the time. Ben doesn't do things when typical kids do them, he does them in Ben time and that's just perfect for Ben, so to hear someone else say the same exact thing was just... gosh... I don't even know the word to use... validating.

So all in all Ben is in a great place with some of the most loving and giving women I have ever met in my life. I don't know that I can ever thank any of them enough. Ben is coming out of his shell and learning that while maybe he doesn't talk as well as the other kids it's OKAY for him to talk in the way he does and that's just fine and people will listen and they WANT to hear what he has to say. He's learning that he can do more than he thought and that he is an amazing little boy. I just couldn't be happier with where he is and how he's doing. Ben may not ever be like the other kids, like everyone else.... but who needs to be like everyone else right? He's better than that, he's extraordinary.

P/T Conference (Soul Crushing) Day today!

Ben's P/T Conf is today and I'm nervous. My stomach is a mess from nerves. I tried to have an egg this morning thinking some protein would help and it's just sitting in my stomach like a stone.

The thing is that every time we do something like this it's always hard for us... or maybe for me, I guess I can't speak for Ed. This is our first PT conf. for Ben because last year when he started school it was after Conf. time. It just seems that every time we do something LIKE this... like when we had Ben evaluated for Excel, it's kind of like getting the wind knocked out of you. I am struggling for words here because I don't know exactly how to explain it all.

It's like... like... every time we do this we hear something we don't WANT to hear. It's not that we DON'T want to hear it though... it's that we didn't see it coming. We kind of go along with Ben day by day and he's just Ben and he is how he is and that's how life goes with Ben and that's NORMAL for us. We see the strides he's making, like he's putting two words together with great frequency now and is even putting three words together occasionally (rarely still, but at least once or twice a week). Then yesterday my brother called and Ben ran over to the me screaming "Hi!! Hi!! Hi!!" which is Ben for "I want to talk to Nana!" LOL!! Well I gave him the phone and told him "It's your Uncle Mike. Say 'Hi Mike.'" I fully expected him to say "Mike" (well, "ike") because typically that's what he does. He repeats the last word you said (with syllable deletion frequently) and that's it. So Ben takes the phone and puts it to his ear and says "Hi Ike!!!" all excited. I was SO thrilled. I mean just ridiculously happy. Ben talked to Mike for a minute or so and then I took the phone back and squealed to my brother "Did you HEAR that!!!!??? Did you hear him say "Hi Mike"?" He was very... oh I don't know... unimpressed maybe. Admittedly but that's because he doesn't live with Ben and get what a big deal that is (and I know that my bro loves Ben, it's just he doesn't GET it and that's okay). So the thing is that we see this and we are honestly just TICKLED pink by it - all of it. We're so proud of him and we see that he's really working hard to do this and trying his hardest and really it's WORK for him. It's hard for him but he WANTS it and he's trying.

So that's the thing, is that we see these things and we celebrate them and find joy in them and take the little sprinklings of happiness and hope that come with these precious little tid-bits. Then we go to one of THESE meetings. We've had meetings like this all of Ben's young life -- here and there... Dr.'s and therapists (PT, OT, ST) and developmental specialists and all that. It never seems to fail that somehow I leave feeling that some of that joy and excitement at Ben's little milestones is taken away..... because they tell us what Ben SHOULD be doing... where he SHOULD be developmentally... how he SHOULD be. That's when it all comes raining down on my head that Ben isn't where he should be in so many area's and that most likely he never will be. It's a little bit soul crushing every time.

The thing is that then in a few days I'm back into the routine of life as we know it and back to our "family normal" and it all kind of melts away and we are with OUR Ben. The Ben that gives us little moments of complete joy. The Ben that we all as a family treasure every little step he takes forward as a celebration and a moment in time of complete happiness. So our "normal" always takes hold again as I remind myself, repeatedly, for a few days that Ben hasn't changed, all that's changed is me and what I heard and how it hurts my heart a little bit.

So today is the hard part. Today is the scary part. The downward spiral that will most likely follow is on me... not on Ben. God, that kid is so amazing and so incredible and has enriched my world and my life experience in ways I can't even begin to describe. He is PURE love in a way that typical children just aren't. He makes us appreciate life and it's miracles in a way I never thought possible. EVERYTHING is a miracle and he has shown me that. Just watching Kit do something so typical and average for her age I now know to look and say "MY GOD!! Did you just see that???" It's different. Our lives, everyone here, are so different because of Ben. Yes, sometimes in hard ways but I don't know that I ever knew such pure joy before Ben came along as I do now. I love that little boy in a way I didn't know possible... and if you know me and know the way I love the other children you realize what a miracle that really is.

Today is just a scary emotional day for me. I've been crying at the drop of a hat the last two days and I know why, I'm preparing. I feel like at least this time I am preparing myself in advance for this, which I didn't really know to do in the past. So is that good? I don't know.

I'm scared today. My soul is going to fracture just a tiny bit today... and then in a few days it'll be better again. It hurts today but tomorrow we go on and in time we go back to our "family normal" and each day we love and laugh and cry and go on.

I probably won't update later today on how it actually went. I'll need some time to recalibrate. I'll update soon though.

New Tricks!

Well, Halloween came and went and I never did get to post again. I did post over at "The Six Pack" blog though so that will have to do. If you want to read about it and see pics... go there.

In other news Ben has started doing some new stuff that we're pretty excited about. This past weekend we discovered that if Ben holds onto something he can jump and get BOTH feet off the floor. This is brand new. Ben has always done this funny little "jumping thing" and he will stand and say "hop, hop, hop" and leave one foot firmly on the floor while he "jumps" with his other foot. It was the best he could do and he liked it and hey, he was TRYING! Well this weekend I saw him go over and grab a kitchen chair and actually jump with TWO feet. I was shocked and screamed for Ed to come see and we both watched in amazement and told Ben what a GREAT job he was doing :) Our Boo was so proud I thought that huge smile of his was going to split his cheeks. It's so awesome now with him because you can really SEE when he's proud of himself for accomplishing something and it's incredible... a total rush.

Ben is also really interested in dressing and undressing himself... BY HIMSELF, lately. Yesterday he managed to get off his long sleeve shirt all by himself, then he needed just a tiny bit of help with the pants, then he got his socks off and lately (and most frighteningly) he managed to get his own diaper off! WOW!! We were really impressed with that too. He also has a passion for putting on his own coat and zipping it up (the zipping he needs a little help with lining it up right first). His new mantra is "OWN!! Own! Own!!" which is Ben for "I want to do it on my own!" LOL! Seeing this new independence in him is remarkable because honestly he's always been such a very dependent and needy little guy that watching him WANT to do things on his own and try things on his own is an enormous step forward.

In verbal news Ben is using two word phrases fairly often now and once every few days we'll hear him put three words together (today he said "baba family room" ("baba amy oom") -- telling us he left his paci in the family room!). He's trying so hard and he's really coming along.

So it looks like our Boo is starting to venture out into the world of independence at this point. Baby steps, but that's how we all start isn't it?

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.

I know, I know... I don't post enough. Sorry.

Ben is gearing up for surgery again. I hate this. I really do. This isn't as big a deal as the surgery last year. Last year he was out for more than 2 hours, this time it should be around 30 to 45 minutes they tell me. Routine surgery, he's getting his tonsils and adenoids out and getting tubes in. Routine, except that it's Ben... it's my son... my hypotonic son. I really just hate this. That we have to put him through this and he has to go through it and deal with the pain and the recovery. Blech. Still it's for the best when it comes to Ben. I know that. Ed knows that too. Still doesn't make it easy, for any of us.

In other news in the past year Ben has learned how to walk, he's talking more (still way behind though), he was into and out of SMO's for his severe pronation, he's started "school" two mornings a week for 2 hours a day, and he's become a big brother. Big goings on for my little fella. He likes school okay. Little weirdo won't say a word while he's there but he likes it okay. He loves his teacher, Joy, just to pieces. The SMO's went over okay at first and then just a mess and he refused to wear them. I would get them on him and he would shake his feet and scream "OFF!!!" and cry. Over the summer, while I was VERY VERY pregnant, I just gave up the fight with him cause I didn't have it in me anymore. As it turns out the Physiatrist is okay with that and says that's fine cause he has really great ortho shoes he wears. We do need to get "cookies" to go in his shoes but even without them the shoes are good for him and help him a lot. So that's all good too. I mean over all Ben's had a good year I think. He's still one tough little nut but that's sort of to be expected... all things considered I guess.

Here's my favorite fairly recent pic of Ben! I took that in late July not too long before having the baby. He just looks SO big in this picture. Momma's big boy.

Some pics that I had trouble posting in the last post... these go along with THAT blog.

sitting in the waiting room as we prepared to leave for home.

eating fries on our way home!
Bad Mommy!

Tubby time! 8 days later!
Such a happy guy :)

Belly, 8 days post op

It's Over and Done!

The anxiety and worry leading up to Ben's surgery was nearly overpowering at times. I know it was for me at least. I know Ed was worried too, but he doesn't worry the way I do... we're just built different. In the weeks leading up to the surgery I was pretty much a total wreck... it wasn't pretty.

The day of the surgery was VERY long and exhausting in every way imaginable. Ben's surgery ended up being delayed for more than 3 hours due to the baby before Ben having some major complications during his surgery -- not really the thing you want to hear right before YOUR baby goes into surgery! Ben was an absolute trouper though and didn't complain once about the lack of food or drink. I was honestly amazed he handled it so well. We kept him busy and entertained and he played and had a great time. He absolutely loved the toys, especially the cars they had to play with, and had a blast. I was amazed and much relieved that he could at least have fun and play. He had no idea what was coming or that he should be nervous or scared. Isn't THAT nice? Wish I could have been so blissfully ignorant. Then again I would have taken his pain on ten fold to spare him the pain, but nobody offered me that option. So we waited, Ben played and also napped a little on Daddy's chest... until a screamer came in and woke him up . At least he got a little bit of a nap though.

Finally at about 1pm we finally talked to the surgeon and the anesthesiologist. We got to discuss our feelings on what we would prefer and on Ben's somewhat unique situation with his hypotonia and other issue's. We asked the surgeon to please come discuss options with us once they we in and we knew what we were up against so that we could make an informed choice with how to proceed and the Dr. was more than happy to do that. They finally came to take him into surgery at 1:10pm. It had been a very long morning and it was finally time. They carried him away and the new waiting game began - the even harder part.

Ed went and got us a very nasty sandwich from the cafeteria that neither of us were very interested in. Ed read and I tried listening to music, reading, and watching a movie and couldn't concentrate on anything. We got word from the desk nurse after about 45 minutes or so that things were "going well" but really... what does that tell you? It tells you almost nothing! I mean okay he wasn't having complications like the baby before him and that's ALL good and we were grateful for that but not knowing what's happening while your baby is in surgery is undoubtedly one of the hardest things to handle. Finally after 90 minutes the surgeon came out and told us what they had found. The teste WAS there but it was very high in the abdomen, higher than they like to descend them from he told us. It was also VERY small, about half the size of his normal teste. The blood vessels attached to the teste weren't QUITE long enough to reach all the way to the scrotum (they could reach but not as "far in" as the Dr. would have liked). Also with the teste being so small there would be a significant chance for it to "pop up into the abdomen again." In addition the Dr. would have to cut some of the blood vessels and there was the chance that the teste wouldn't even survive the surgery if that was done - it was possible but certainly not a gaurentee. All things considered it just seemed the better part of wisdom to have it removed. Having it removed also saved Ben from a much more invasive surgery with larger incisions and a considerably longer time in surgery. Removing it they could do all laproscopically from the 3 incisions they already had and Ben would be out of surgery much more quickly. So we told the Dr. to remove it and he told us he thought that was a good idea too. So he went back into the OR telling us it would be another 30 minutes or so. Almost exactly 30 minutes later the Dr. came out and told us that it had all gone very well and that they were "doing the packing" (whatever that means) as he left. He said that Ben would be in recovery in 20 minutes or so and we would be able to see him soon.

We called parents and waiting anxiously for word, this time was the hardest for me, on when we could see Ben and finally a nurse called out "Benjamin's parents" and we practically raced down the hall toward our baby. Finally we came upon his stretcher and there he was. His little head of dark hair, his pink little face, his still body under the blankets and all the wires and machines beeping and pulsing and doing their thing. It was eerily reminiscent of the NICU and I got a shiver up my spine... but there he was. We were told not to touch him and to just let him sleep. They said that he would most likely sleep about 45 minutes, but possibly longer because of his hypo. So Ed and I pulled chairs up next to the bed and just watched him - his chest rising and falling, his little puckered dry looking lips, his red little cheeks, his long brown eyelashes resting on those same cheeks... it was soothing being close to him again. We still had reason for concern but just being near him helped ease the fear and anxiety.

After about 10 minutes Ben started rousing. He started moving around and I realized he was going to wake up so I slapped Ed's arm and whispered "GO GET THE NURSE!" The nurse came over just as Ben rolled onto his back and opened his eyes. She told me to go ahead and pick him up but I was so afraid of hurting him I was scared to pick him up. With her help we managed to get him up and settled against me. He was miserable and unhappy and started vomitting which was upsetting but soon he settled again and slept. He nodded in and out of sleep and vomitted a few more times until the nurse finally gave him some Zofran (good stuff!) and that seemed to abate the nausea and he calmed down. After that he didn't really sleep anymore but he stayed quietly in my arms and took in the world around him. All the beeping and machines and strange noises and unusual things to look at. He was quiet but alert and aware... YAY!!!! Time passed and he got pain meds via IV and then later some oral pain meds and we waited. Waited to see how he would do and if he would vomit more and how he was feeling.

We were ALL amazed by him once he came around and wanted to do more. I lied him on the bed and let him look around and he liked that. He was looking at everything and watching people and responding to our voices and doing wonderfully. He even SAT UP before we ever got out of recovery for just a few seconds while we put his clothes on! The nurse and I were both flabbergasted! So we packed him up, got our instructions and were on our way home! In the waiting room while Dad made a pit stop Ben insisted on sitting in a chair... by himself. I had my doubts but he was so insistent I put him down and let him sit. He was obviously very groggy but he did it! I was just in shock.

So home we came to our waiting and rejoicing family. On the drive home while Ben was supposed to have only clear fluids he managed to eat 10 french fries, half a cup of apple juice and then slept a deep sleep the rest of the car ride! Poor kid was STARVING! It had been more than 24 hours since the last time he'd had any FOOD! I couldn't blame him. We got home and there was much merry making :)

Ben's recovery has been nothing short of miraculous. Twelve hours after surgery he was CRAWLING all over the place, pulling himself to standing and cruising! You'd never know he just had major abdominal surgery! We were just totally blown away! The only indication that he wasn't 100% was that he slept a lot that first day after, but beyond that no indications he'd just had surgery. Ben's PT and pediatrician were both just amazed!

Now, a week later, Ben's biggest problem is that he's teething and it seems to be bothering him! Go figure!! He's had his first tub bath, where he pulled off the steri-strips (oops!) and his incisions look like they're healing nicely. You can't even see his belly button incision at all and the incision on his right side is very small. It looks like the left incision is going to leave something of a scar but all things considered... not bad!

Through all of this Ben is reaching milestones and making strides. He's talking more. He's communicating more. He's using more signs and saying more words and seems to be trying harder to make himself known and his desires. He's learned what his nose, teeth, feet, socks, shoes, and ears are! He's playing games with us more and more. He is truly our little miracle man. I'm just so glad that this chapter is behind us and we can move forward now :)

Getting so big!

Ben is doing so great lately! We are just amazed every day with the progress he has been making.

This week he got new SHOES! I had to get him the old traditional high ankled walking shoes but then these were on sale for $6... how could I say no? He looked so big this day with his overalls and his shoes, I had to get a picture! Isn't he looking great? I have to admit he doesn't love his shoes but if he see's me pull them out he holds his feet up... he knows where they go and what they are for. He's good with them for a while but then he starts pulling at them with his hands and if you say "shoes off" he laughs like it's the best joke he's ever heard! LOL! He likes his socks off too! Just like his Momma!

He's crusing all over the place now. He can walk around the couch and the coffee table and chairs. He's doing so well. He can even turn himself around and then FLING himself headlong at Ed or I - knowing full well we will always catch him and protect him.

He got another tooth so he's up to THREE now! With his new tooth has come a new interest in regular food! He's eating shredded wheat now. He likes grilled cheese crusts. He'll eat PB&J if you cut it into strip for him. He ate part of a bagel with butter the other day! He LOVES cookies! Big surprise there huh? A kid that loves cookies? Go figure! LOL! He even ate a brownie the other day. He'll also eat small veggies (corn, peas, and such) that we put on his tray. Still no luck with meat of ANY kind though. We've tried all different kinds and he's just not interested at all. Still he IS eating more regular foods and he is more interested in what people are eating and interested in trying things! That alone is wonderful.

We're gearing up for the big surgery this week. Trying to hold it together until then. Ben started with a cough last night so tomorrow first thing we see the Ped cause they won't operate if he's sick! We have to try to get him well QUICK!!!

Pray and think good thoughts for us this week and in the weeks to come during his recouperation!

Testing

Testing Ben's new blog