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'