Summer for Ben-da-Bull

So Ben finished his year of Excel and enjoyed it. He really came out of his shell in school this year, started talking in school, started showing more of his wonderful personality and his sweet disposition. It was a good year for him and he made his strides forward, slowly but surely the way he always does. We are extraordinarily proud of him and the year he had.

Right now Ben's on vacation. He's enjoying just playing and hanging out with his sibs. He's not wearing his SMO's at often. He's not getting PT/OT/ST (which makes me just slightly crazy but not bad). He's just enjoying himself. I think he is LOVING the attention of his older sibs and having them home all day to play with. Next week the pool will be up (FINALLY!!!!!) and I think he's going to LOVE that... well, okay the water is going to be freezing cold, so maybe he won't love it right away but I think he will once the water warms up. I look forward to that with him this year.

Then on July 6th Ben will start summer camp. He'll be going to the camp run by the school for SN kids. Unlike his regular school year this will be ONLY SN kids and no typical kids. So it's a different environment and smaller with less kids. I think it's a good experience for him to have this time with just other kids with SN. I love his school year and that he has typical kids in his classroom, but I think these summer sessions are good for him too. I know it'll put me more at ease knowing that he's getting his PT/OT/ST again. He'll go all through July and the first week of August and then get 2 weeks off before the start of his new school year... in the 4 y/o program next year! WOW huh?

So much more going through my head but I can't seem to find the words for it. I can't express it how I need to... and I need to do it right. The short is that I considered, briefly, sending Ben to the art camp for 3 - 6 y/o at the art studio where the older girls are both volunteering this summer. It was WAY out of my comfort zone but I thought it would be good for Ben, and for me too for that matter... for so many reasons. Ben in with all typical kids... kind of daunting. I discussed it with Ed last night and he just said no, he didn't want to consider it. Ben only gets two weeks between the end of school and SN camp and then 2 weeks between that and the new school year so Ed said we should let him have some "downtime" and enjoy it. I wonder if that's really why or if it's REALLY far outside of his comfort zone too or if it's just the money but I'm willing to go with his on this. He seems to feel strongly about it so I'm with him. Having Ben in our lives we face more challenges then we ever anticipated. I think we do okay and we face those challenges... but I admit I was never so torn up about sending a child to camp before. We'll stick with the SN camp and he'll love it... and maybe next year he can do little kid art camp. We shall see.

and now.... EYES!!

So last week was kinda crazy at our house. Some very close friends were visiting and so we were running around like crazy -- busy and having fun. On Wednesday night we went out to 5 Guys for dinner with the whole gang of us... that was a blast. The kids all had a great time and the food was amazing. Ben ate an entire hot dog and asked for MORE!! He ate french fries and was very happy -- he loves being out and about.

Anyway, we came home and I was keeping Carolyn company out on the deck while she smoked a cigarette (blech!) and the kids all gathered around the TV watching Doctor Who. Carolyn and I sat in chairs near the sliding glass doors actually enjoying the unseasonably cool temperatures and chatting. Ben was playing with the door and screen and coming in and out and in and out and occasionally slipping the lock, locking us out, and giggling like a loon. He was having fun and I love to hear him laugh so I just tried to not think of all the bugs he was certainly letting into the house.

He stood there, in the doorway, and looked up at me and his eyes crossed. I mean REALLY crossed... like I haven't seen them cross since before his surgery back in December of '05 when he was 9 months old. I mean painfully crossed, so much so that he lost his balance and had to grab onto the frame of the door. I admit, it FREAKED me. It took my breath away and stopped me dead in my tracks. Obviously my reaction was noticeable because Carolyn said "WHAT'S WRONG????" and I told her that Ben's eyes had just crossed, badly. She told me "he's just tired" and I wanted to believe that... but in truth I have seen that boy much more tired and I had never seen his eyes cross in that way before, not since his surgery anyway. I have seen him terribly sick too and I have never seen his eyes do that, not since his surgery anyway. So I watched him, and within five minutes I saw his eyes go crazy and super crossed another 4 or 5 times... and now I was just downright SCARED. Carolyn told me he was just tired but I knew it was more, even though I wanted to believe her. Oh I so wanted to believe her... but I KNOW Ben... and I knew that this was outside the realm of normal for him.

After a fashion I took Ben up and put him to bed and he fell sound asleep within minutes he was just so exhausted from his long fun day. The next morning in the usual morning chaos of getting 5 kids on 5 different buses to 5 different schools I have to honestly admit I didn't notice his eyes and if they crossed. They didn't when I was looking at him and getting him dressed and shod and all, that is the most I can say. He went off to school and I tried to tell myself that it was just because he was tired... really really wanted to believe that.

He came home and seemed fine. Ate his PB&J with his Daddy just like always and while Daddy put down Kitten for nap I sat with Ben and we read a book together. We were looking at the book and the pictures and I was reading... and then he turned to me and his eyes went completely wonky and crossed :( I immediately gave him a big squeeze, told him I love him SOOOOOOOO much... and called the pediatric ophthalmic surgeon and said that Ben needed to go in. They gave me an appt. for an hour later, because they had only just had a cancellation, and we were out the door in no time. I was pretty worried and had visions of yet ANOTHER surgery on Ben's long list of surgeries. The drive to the office seemed so long... so long to think and be scared and, as is normal for me, envisioning the worst case scenario. Not my favorite trait about myself I must admit.

We got to the office and Ben was VERY impressed because they had expanded the office and moved things and Ben had a blast running as fast as he could from one end of the office to the other. We finally went in to the exam room and the nurse checked his vision and Ben did pretty good... his problem is that he gets bored and then just doesn't WANT to do what is asked, not that he can't. He's a little bit more like his older brothers than I like sometimes! LOL! Anyway, Dr. came in and checked him out and looked him over and asked Ben to look at the TV (good luck with that!! Ben is NOT a TV child!! LOL) and after a little while he put some lenses up in front of Ben's eyes and asked Ben to point to some things, which Ben was only partially compliant about. Dr. then turned to me and said that Ben is near-sighted and that his eyes are crossing basically due to muscle fatigue and his eyes trying to make the adjustment from close vision to far vision and that his eyes just cross due to the strain. Great.

So here comes the confusing part. There are two solutions to this. The first is to get Ben bifocals. It's simple and easy and he would figure it out on his own and get them to work right for him. Not a very complicated solution really... bifocals for a 4 y/o seem a little over the top but... that's just kind of how our Ben rolls huh? The other solution is these eye drops that have been around for 100 years. The thing is that apparently it helps to "lessen the impact" of the distance and close vision, don't ask me how, I don't know... I think it helps ease the muscle fatigue is what it comes down to. Anyway, the drops are derived from a pesticide. You see 100 years ago a Dr. discovered that kids that had their eyes cross while trying to focus somehow got BETTER when exposed to this pesticide. So he made eye drops from the pesticide, much diluted of course, and found that the children got better... and stayed better! So those are the drops we still use today. they are also used to treat glaucoma at a much higher concentration and twice a day as opposed to three times a week like Ben will be getting. The two downsides of this are that about 5% of patients are allergic to the drops. So if he ends up with puffy, red, irritated, itchy eyes we stop the drops and he gets glasses. The other downside is that in about 4% of patients get small cysts on their retina from the drops. They're very small water filled benign cysts from the drops that go away once you stop using them. So we're going with the drops at this point. If Ben has an allergic reaction OR it is discovered when we go back in 2 months that he has cysts we go with the glasses option.

So today we started him on his new drops and we see how it goes. Keep your fingers crossed for us that it goes well. I'll keep ya posted!!!!

More & more & more on feet

So I should have posted about this sooner but I had to get past my haze of absolute rage first (see MY blog about that). Obviously the insurance company said no to Ben's gait plates. Just no. The simple story that it states in black and white in our policy that orthotics are ONLY covered for diabetics in our plan. Great. Can't even fight them because it's not a grey area... it just is what it is and we have to accept it. Period.

So, I don't really know what to do now. Well, in reality there isn't much to DO. We just have to continue with the SMO's... that he hates. We just have to keep on doing what we've been doing... even though he hates it... and we hate it. It just sucks.

Blah. I guess I haven't gotten through all of the anger, maybe just the rage. Anyway, so Ben stays with his SMO's for now. Nothing else to say I guess.