Possibility part 2

Okay so last night it just got so late I was having trouble formulating coherent thoughts. I'm tired today, it's already been a long day and it's only 1pm, but hopefully I'll be able to think clearly.

So where does the whole possibility thing come in? Let me start at the beginning I guess.

Back in early September I noticed that the little swirly part of Ben's hair, that all little ones have, was looking thinned out to me. I wasn't something that worried me too much but I definitely noticed it. I took the pic that is in the title graphic of this blog on September 1st. I had been kind of noticing it before that date but wondering if it was just me and maybe he wasn't really losing hair and it was just this or that or my perception or something. I remember the day I took that picture was the day that I was absolutely sure that his hair was thinning. I still didn't panic or freak out or anything but it was something I made a note to keep track of.

Well, after this his hair loss became more and more prominent and noticeable. His hair was thinning all along the top and in the back by his sweet little hair swirly. Then Ed's parents in late September and it was getting worse and worse. My first assumption was that since Ben has a bit of a hair obsession (long story behind that, maybe I'll explain it another time) and he tends to twirl his hair around his finger that he was simply pulling his hair out from twirling it too much. I also figured that he had an appointment at the endocrinologist in a short time so we would just try to keep his fingers out of his hair and talk to the endo.

That's what we did and the endo assured us that Ben does not have any hormonal issues causing his hair to fall out. His testosterone is good (which Dad was really relieved to hear considering the one teste thing), his thyroid is good, his hormones are all good (with the exception of his IGF1 which we were aware of and has nothing to do with hair loss). So the Endo recommended we see a Dermatologist. Onward and upward! Made the appt. took Ben in, got told that Ben's hair loss around his swirly is definitely from pulling it out. However the hair loss from the top/front area is "Alopecia Areata" -- which is Dr. speak for "his hair is falling out and we don't know why." Dr. asked the usual questions, his hormones, his thyroid, his chromosomes... all normal we assured him. So he doesn't know.

Okay so now we're getting in the juicy part. Ben has been diagnosed with congenital Lyme Disease and was on meds for that from the time he was 6 mos. old until about 4 months ago (basically when money got SO tight we just had no choice but to stop temporarily). Having lost some hair myself due to Lyme the thought occurred to me that perhaps Ben's Lyme was flaring up again and that we needed to get him back on meds. So I called and told the Lyme Dr. that Ben's hair was falling out in chunks and he got us an appt. only days later.

We saw the Dr. and, as always, he was wonderful with Ben. He spent a long time with us and examined Ben and observed him, gave him verbal directions and interacted with him and Kitt too. He watched the kids play and announced that he was amazed at Ben's progress in the last many months. He said his muscle tone is better, his speech was improved, his social interacting was better... he just seemed like he was doing great. He was amazed to hear that Ben was off meds and said that he felt that if Ben was going to relapse he would have done so already. So we did some blood tests.... and there is the possibility... the almost to good to be true unbelievable possibility that maybe Ben will test negative for Lyme for the first time in his life. Maybe. Just maybe. It's out there. It's POSSIBLE.

So fingers crossed while we wait. Hoping and praying and wondering that maybe this is it for him and Lyme.

Possibility

So yeah, no update for a long long time. It's always crazy here. It's always chaotic here. Summers are more crazy and yet more laid back at the same time. There isn't the crazy rushing around, there isn't the evening mayhem of homework, and showers, and projects, and school functions, and insane bus schedules, and teacher meetings, and and and and and... The pace of summer is gentler, slower in pace, quieter in some ways. Having six kids around is NEVER quiet, but it has a quiet easy feel to it I guess.

This summer was a good one for Ben. He did a week of typical art camp... which weighed heavy on my heart to let him go but was an amazing experience for Ben. He learned to be more independent... he wasn't afraid of the dogs at the studio, he found his own way without me there helicoptering constantly. It was good... for the both of us. He also did his routine SN camp that the town does. He went 3 days a week this summer for the 6 weeks. He enjoyed it, as he always does. He had his PT, OT, and ST... also at a quieter and gentler pace. He came home with fun art projects and all covered in sweat and thrilled to be home. It's good to see him that way.

Ben took some big steps this summer. He just seems different to me. He started talking more. He started putting together longer sentences. It was almost comical really. This summer Kitt also started talking more and kicked it up a notch by starting to talk in 3 word sentences. Ben saw this, as he himself mostly spoke in three word sentences, and said not just no... but HELL no and started to speak in 5 word sentences with regularity and every now and then 6 or 7 word sentences. It wasn't only that he was using longer sentences though... it was that somehow he was finding ways of using new words and better ways of expressing himself to better communicate his needs, wants, and emotions. He also showed a greater understanding of concepts he previously hadn't. Ben has ALWAYS been an extremely loving and affectionate child, always. This summer Ben started saying to me "Mami, I love you EVER!" (Mami, I love you forever). The first time I heard him say it I had butterflies in my stomach and my head was spinning. He loves me FOREVER. Is there anything better than that? Really... anything in the world better than THAT? I think not.

Over all Ben is just changing a lot lately. He "feels" older to me. I get it that he's delayed, you don't have to tell me because while I love my children more than I can possibly express I work VERY hard to not be completely blind to who they are. I get it, he's delayed... he's not like other 4 year-old boys. I know that. I watched him this summer as Kitt caught up to him and then started passing him. I watched with both awe in Kitt and how amazing she is and pain for Ben and watching him fall behind. Still he's different. There's something about him. He's playing games with us now. This summer he cracked me up when we went to the hospital for more testing and as we waited in the waiting area and told Ben very pointedly that he was to stay in the area where the carpet was he hopped off the carpet and hid behind the partial wall laughing as he shouted to Ed and I "Haha!! Missed me!!" THAT is new... that is a blossoming of who Ben is. That is a maturation into a boy that knows that he's playing a game with us, he knows it's funny, and he's relishing in his own freedom knowing that he is MORE than just an extension of one of us. That is cognitive development... and it's a beautiful thing.

Oh and in fun news while Ben started out the year absolutely terrified of "the big pool" and only a little iffy on the baby pool he ended the summer begging me on days to take him into the big pool so he could play. He's such a little mystery that boy. Most of the summer had gone by and still Ben wouldn't go into the pool so I admit that one day I just scooped him up and brought him in with me despite his protestations and wails. Within a minute he stopped crying, within 3 minutes he was laughing and within 5 minutes he was playing so vigorously it became a challenge for me to hold him tight enough that he wouldn't slip out of my arms! That was it, he was sold... for the most part... because you know he IS Ben. After that he would beg me to swim and when I would get him ready to go into the pool he would suddenly be afraid again and tell me "NO POOL!!" right up until the moment we were actually in the pool. Such a nut that little guy :)

Fall came and the new school year. Same classroom, same teachers and aids, same kids, only difference being now he goes to PM class instead of AM class. I was very worried how he would handle it since he was still napping every day in the summer but he's actually handling it just fine. Well, okay he's tired in the afternoons and often naps on the bus ride home, but he's handling it better than I had anticipated. Good news! He is comfortable and happy at school and I'm so glad at our choice to leave him where he was instead of moving him :) His PT says that he is making AMAZING progress this year so far so more good news. I have to get in touch with his OT and ST to see what they have to say.

Okay it's late. I must sleep. I WILL update some time this week about our very big appointment with Ben's Lyme doctor from Saturday. Just can't do it tonight. As is so often the case here, so much to do and so little time!

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.

more about feet

So we saw the podiatrist today. Another Dr. joining us on "Team Ben." Ben has his leg braces, he HATES them... and you have to know Ben to know what a huge statement that is. Ben puts up with more and deals with more and just simply tolerates more than any other child of his age I have ever know. He just does what needs to be done and even if it's hard and even if he's not sure he can do it and even if he doesn't like it... he just deals with it. EXCEPT when it comes to the SMO's. He just hates them. They have left permanent scars on his legs, they cut into him and hurt him and make his feet sweat like crazy. They're hard and uncomfortable and I can't only imagine just a nightmare to have to deal with. Every time we take the "Mo's" out Ben cries and does his "all done" sign while squeaking out between the tears "No Mo's Mama. Peas. No Mo's Mama." It's heart wrenching... seriously heart breaking. I have seen him get shots and have IV's put in and go through surgeries and just deal with it... but he sees those Mo's and just melts into a puddle of tears... my poor angel boy.

So anyway, we saw the Podiatrist today at the recommendation of his Physiatrist because the latter thought that maybe Ben needed surgery. So we made the appt. and today was the day. We had to wait a while, which was a big PITA with two overacting and crazy babies with us. Finally the Dr. checked him out and said that Ben has very flat feet with a "protruding heel" (I think that's what he said) and severe pronation. The Dr. told us that basically it's inevitable that Ben WILL NEED surgery at some point in his future. They then did a bunch of "load bearing" x-rays and Ben was amazingly cooperative. He did exactly what they told him and seemed a little nervous as we would all leave the room for just a moment when they took the films but didn't cry or get upset... but did give us his million-giga-watt smile when we would come back in after the button had been pushed. He was such a trouper. I'm so incredibly proud of him. Anyway, we got really good news in that all of his foot bones are properly formed and VERY straight, as they should be, so that was great to hear and see. So when Ben does have to have his surgery they aren't going to have to cut or trim or break bone, just deal with soft tissue and "inserts" into the bone to correct his problems. So all in all... good news. Yeah, he has to have surgery, but we pretty much figured that going in. The best part is that once he is old enough for the surgery he will be rid of "Mo's" for good.

In the meantime the Dr. suggested that since Ben is so young and hates the Mo's as much as he does maybe he could try a "gait plate" in the meantime. They're easier to deal with and just go inside the shoes and won't be as hot, sweaty, or painful for him. So in a couple of weeks we'll take Ben in for casts and then he'll have some gait plates made and we'll see how that goes. I'm really hopeful that this will work better for him than the SMO's are now... and the best part is that they won't be as hot and uncomfortable. So I'm really hoping that they work well and we get good results with them until the surgery time comes along.

All in all... not so bad. Right? Another surgery for our boy at some point but he'll be older, better able to understand and with the promise of no more hardware I think a surgery he'll be willing to deal with for the great payoff in the end.

things that make you go Hmmmmmmmm.......

Ben went to school this morning. Like he did yesterday morning. He doesn't go to school on Monday's so not an issue. I posted about Ben's newest boo-boo here just in case you missed it.

So today, early this morning we get a phone call from the nurse at Ben's school. She tells us that the teachers say that Ben bumped his head and he has an ugly bruise on his head so they wanted her to check it out. She called to tell us about it and then mentions "but it looks like it might be old?" So Ed tells her "Yeah he got that over the weekend." She pauses for a moment and asks "was he in school yesterday?" Ed tells her that yes, he was in school yesterday. She thanks us for our time and says goodbye.

So... I'm kind of thinking... WTH? Should I be glad that they noticed it and wanted to get it looked at to make sure he was okay? Or should I be upset that they didn't notice YESTERDAY? It just seems odd to me. Don't misunderstand, I LOVE Ben's teachers and his teachers assistants, they're all wonderful. Honestly yesterday when we heard nothing about it I just assumed that they had noticed it (it's a little hard not to notice but admittedly sometimes his hair covers it a bit) and realized he had fallen over the weekend and didn't think anything of it. So when I got the call today I was a bit thrown. Weird.

Well... all in all they wanted what was best for Ben. They thought he had hurt himself and took him to the nurse for care so that's all good.

Next we have to work out his transportation to his summer SN program.

Sweetness

This morning I woke up late. Ed has been an absolute and utter saint and has let me sleep in almost every day for a week since I've been so horribly sick. I'm doing better, I wouldn't say 100% but I'd say I'm a good 90%, and even today he let me sleep in. Due to this complete spoiling on his part I have developed absolutely atrocious sleep habits in the past week and I'm going to bed WAY too late and sleeping in, usually until 8 or so. Well this morning I am almost embarrassed to admit I slept until 9:30!! I honestly haven't done that in years! Yeah yeah yeah... what does this all have to do with Ben. After all it's his blog right?

So I woke up feeling great and called Ed to come spend a little cuddle time with me. Just some quiet time together before going downstairs into the normal chaos and bedlam. We spend just a few minutes spooning and talking and sending up a prayer for my brother's wife when Ben joined us. We heard his little uneven steps on the stairs and his little knock at the door. We told him to come on in and he opened the door and came in. He immediately ran over to Daddy's side of the bed and crawled in tucking the covers up to his sweet little chin. So we spent a little time together... Ben being the sweetest thing ever and offering kisses and hugs and telling us he loved us. In short order he had moved himself to the middle of the bed between Ed and I so he could more easily get lovin's from both Mami and Daddy. It was just nice. It was nice to hold him and cuddle with him and be with him... really WITH him.

We worry sometimes what the future holds for Ben and what his life will be like. One thing we know is that his life will be filled with love and he will shower those closest to him with his very special brand of love and affection in his own special Ben way. Mornings like today make me push aside those worries and concerns and make me revel in the miracle that is Ben. We have six kids in this family and the God's honest truth is that I have never met a child that loves as completely and purely as Ben does... with reckless abandon and every fiber of his being. Babies love that way but so quickly toddlers learn the ways of manipulation and cunning... but not Ben. Kit still loves in that pure unspoiled way but she's just a baby and she'll soon move on to finding her own persuasive techniques to get what she wants... putting out that bottom lip, a few crocodile tears, that sweet little smile with just the perfect head tilt... all in her ploy to get her own way. It's the nature of the beast... and really I'm okay with that... I kind of enjoy it in some dark and twisty way that is so uniquely me. I know though that Ben, at four-years-old, doesn't have that. He is pure and sweet and loving and kind and good because he just IS. I love that about my Ben. I love that so much I could eat it up with a spoon.

We are so blessed.

Boo-Boo Ben

Well, instead of Benjamin-Boo we now have Boo-Boo Ben. He got a big old goose-egg on his head. He was playing out on the deck, doing something he KNOWS he's not supposed to do, and fell over and slammed his head. He cried and told us about his boo-boo and we put ice on it for a little bit but I think he hates the ice more than he hates the boo-boo's themselves. Some Motrin and a lollipop later and he was feeling okay... although he did make sure to remind me of it several times before he went to bed.

Do you want to know what that little imp was doing out on the deck that he KNOWS he's not supposed to do? He was standing on one of the deck chairs. One of the ones that spin. One of the two I have left on the deck because my foolish children like to... get this... push the chairs up to the railing and then stand on the chair and lean over the edge. Yeah that little trick almost put me into early labor with Kit when I watched Patch do it... twice!!! So anyway, Ben stood on the chair and it spun and toppled over, little boy and all. Ben was so stunned he couldn't even cry at first, he just lied on the deck his eyes as big as saucers completely stunned. Then came the tears and him telling us he had boo-boo's. He first told me that he had a boo-boo on his belly... THEN he told me "boo-boo head" and I saw the egg!

So here you have it... our little boo-boo Ben. The pictures don't do it justice, IMO. It's much more purple and black and blue than that IRL. Oh and that's him sticking his tongue out at one of his older sisters.

Ben Ben feet feet

So during spring break Ben spent most of a day running around outside playing having the time of his life. He was so happy. That boy just loves being outside... and even more so he loves it when I let him go down in the yard and run around with the big kids and play on the slide and just have a general amazing time. Generally speaking he's such a happy boy... always has a smile for everyone and a kiss and a hug and is adored by all that know him.

Anyway, after a fashion he came inside and with tears in his eyes ran up to me and sat in my lap and told me "shoes off. HURT!!" and was so miserable. I took his shoes off and then his SMO's and saw BLOOD on his socks. Oh shit. So I peeled his little socks off and his ankles were bleeding from the SMO's. It looked awful and he was crying. I felt SO bad. My baby was in pain and I hadn't known and now he was bleeding. Of course we immediately stopped using the SMO's and called his physiatrist and his SMO guy, Gordon.

Anyway, it's been more than two weeks and his legs are STILL horribly bruised and you can see where the scabs healed over. This week he sees his Dr. and Gordon and I don't know WHAT we're going to do to be honest but we have to do something.

I get it this his pronation is bad and truthfully, I know it's true, getting worse. Ed's taking to calling Ben's feet his "flippers" because... well... they're just a mess. They look bad and I know it's bad for him and it's going to destroy his ankle bones and his knees. I KNOW that. I just hate having to put him through the pain and discomfort of the SMO's. The other thing is that they are HOT. Having plastic all around your feet is HOT. In the dead of winter he comes home and his little socks are drenched with sweat. I have to take them off when he gets home and put on fresh dry socks every day. I can't imagine how he is ever going to manage in the heat of summer with them and I cry just thinking about it. I can't help it. I just well up and cry.

It kills me inside. It's like it just takes a part of my soul and crushes it and I can't stop that. He's my baby. I want to take away all his pain and his discomfort and his problems and make them go away........... and I can't. I see him suffer and it's like a knife in my heart. Why can't I just make it all better for him? Why can't I take his suffering upon myself and spare him?

I'm not in a good place right now with all this. Ben's feet and the bleeding and bruising... the fact that Kit is starting to talk better than Ben... seeing how far behind he is when we see another 4 y/o child. It's just hurting. I want the world for Ben. I want to give it to him on a platter and make his life easier. Why can't I do that?

Dream Within a Dream
E.A. Poe

Take this kiss upon the brow!
And, in parting from you now,
Thus much let me avow-
You are not wrong, who deem
That my days have been a dream;
Yet if hope has flown away
In a night, or in a day,
In a vision, or in none,
Is it therefore the less gone?
All that we see or seem
Is but a dream within a dream.

I stand amid the roar
Of a surf-tormented shore,
And I hold within my hand
Grains of the golden sand-
How few! yet how they creep
Through my fingers to the deep,
While I weep- while I weep!
O God! can I not grasp
Them with a tighter clasp?
O God! can I not save
One from the pitiless wave?
Is all that we see or seem
But a dream within a dream?

Eye Doctor Again

So we saw the eye Dr. again. Just like always, every 3 months bang on the dot. Good news is that Ben was really cooperative and he's not really dreadfully sick other than a swollen gland and so he had really good movement in his lid. The Dr. was able to measure 9mm of movement as compared to only 6mm last time! That alone is reason to celebrate. He tells us that with 9mm of movement they can do the levator surgery instead of the sling surgery which is also really excellent news. All around a great appointment and I was so pleased to see Ben so cooperative and doing so well. He's such a good boy.

The Dr. said we're still in our "holding pattern" for the time being and no surgery on the horizon. That's great. I did get the impression that he's kind of thinking of doing the surgery next summer though. He wants to do it before Ben starts school, however the fact is that Ben is already in school. I personally feel that if we can hold off on it we should. The larger the levator muscle gets the better success they can have on the surgery for the absolute best result. I understand that kids are cruel and will tease, but Ben is already in school and he's NOT like the other kids. It's a hard fact for some to face but his father and I understand that he won't ever be like the other kids and that's okay. Yes, of course if we can save him from ridicule and pain we will but I honestly don't think that sort of thing really starts until about 3rd grade or so (from my experience thus far with teasing and bullies and picking on the "different" kid). I don't know. I have mixed feelings I suppose. It's going to be painful for him and not an easy recovery... I kind of think that giving him more time that he will better understand what's going to happen would be a really good idea too. I just don't want to put him through more pain of surgery before we have to I guess.

Well, in the end we'll do as we always do and make the best decision we can with Ben's best interests in our hearts. It'll all be fine.

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'