Author: autisminourhouse

We have knowledge now of our long term treatment plan for the eldest; I am a woman who likes a plan. On Monday or Tuesday (crap that’s only 5 or 6 days away!!!) we will have bone graft surgery. At that time the cranio doc will remove one loose baby tooth. There will be an 8 week recovery period; after that, we will go in for an x-ray to make sure the graft took (fingers an toes crossed…knocking on wood). Then, we (in the royal sense) will have five (count them ONE. TWO. THREE. FOUR. FIVE!) teeth extracted. The orthodontist said not to worry; the permanent teeth will be in within a matter of a week or so. Then, another eight week recovery period. Then, new molds, x-rays, etc. Then EXPANSION! We don’t know exactly how long this part will take, but I’m guessing 6 months. Then, more molds, etc. Then orthodontia begins. It’s nerve wracking. The thought of Joe just healing to have more done is unsettling at best, but it is what needs to be done. In the end, it will be okay. Now that I have a “plan” I can focus on the first step. Isn’t that strange? The first step is always the first. I don’t know why I can’t focus on the first step without knowing where it will lead…

T minus two (and a half) weeks until bone graft surgery. I feel better now that I’ve discussed things with the surgeon. Joe’s alveolar ridge is in perfect position without palate expansion to move forward with the bone graft. In layman’s terms the two sides of his gum line meet nicely; The ps and orthodontist feel that by doing the bone graft now, they will be able to potentially save some of the permanent teeth.

The surgery will take about two hours. They will harvest bone marrow from his hip and insert it into the alveolar ridge. Most of his pain will be from his hip. Although, he has always been a trooper and has such a high tolerance for pain, I worry that this is the one that’s going to get him. He will have lots of facial swelling; probably similar to when he had lip/nose revision and turbinate reduction.

We’ll be at the hospital (Santa Rosa’s Children’s) at least one night. I actually like that. That way, if his temp goes up, he vomits, etc, the experts will be there. The good news is this gives us our six week restricted diet and activity at home, and we don’t have to worry about what will happen at school.

We go to the orthodontist Monday; I know I’ll know even more then. We will go back to the surgeon two weeks post op, six weeks post op then, back to the ortho for x-rays to make sure the graft took. Monday, I’ll know more about the orthodontists big picture as far as extractions, expansion, orthodontics go. But, one step at a time…

Thanks for your kind words and good thoughts!

Xoxoxoxo k an co

no! it’s not THAT! or THAT! the eldest’s craniofacial doctor and orthodontist had a telephone conference on tuesday. i had expected a phone call from the orthodontist telling me we needed to schedule extractions in order to move forward with palate expansion. instead, i got a call from the cranio office saying the surgeon wanted to schedule an appointment to discuss surgery. i was all like “okay.” later, i was all like, “what?” the orthodontist’s office phone was out all afternoon tuesday. when i spoke with them yesterday, the AWESOME patient doctor liaison said that both doctors agree that the proper course of action for the boy is to do bone grafting first, extractions and expansion later. okay. it’s just that for the last seven and a half years, i’ve been told things would go in this order: lip repair, palate repair, lip/nose revision, palate expansion, bone graft, orthodontics, septum repair/cosmetic touch ups. i know this by heart. now, they’ve gone and thrown a wrench in my mental plan. after tuesday’s appointment, i’ll be able to make a new “plan.” i’ll feel better. i’m a woman who needs a plan. until then, i will google, research and otherwise occupy my brain. my hope is that we can get this done with plenty of time for healing before second grade begins! hope you are all happy, healthy and generally swell! k

for those of you that know me, this will come as a shock, i’m sure, but i cried like a big ‘ol baby during first grade graduation. you would have thought he was graduating from high school or harvard the way i carried on. it’s not that i’m sad to see the eldest leave first grade behind, it’s a two-fold issue for me. first, east avenue primary has been such a wonderful, caring place for my sweet, smart, gifted, talented, amazing, challenging boy to be. this year, we sought his AS diagnosis after thinking long and hard about it. e.a. has been amazing helping joe without hindering him…letting joe help himself. his teachers have cared for him when i couldn’t be there. they have supported him through meltdowns, achievements, not being able to eat in the cafeteria, helping him work with his friends and the list goes on. he has been at peace there. now we are on to another school at GISD and i am hopeful it will be as rewarding an experience, but how can i leave e.a. and all the wonderful women (and coach) without shedding a tear or two. they all knew his name (even with 600 plus other kids there). they all took the time to really see him. i feel the love those special and amazing people have for children everytime i walk in the door. mrs. blundell, his first grade teacher was the perfect teacher for him. i have to admit, i was worried when i first met her. she seemed so, well, nice. she is nice. she is firm. she is fair. she is loving. she didn’t let joe get to her, she just loved him and helped him thrive. the second issue for me is time. my wise grandmother has always said, “the days are long, but the years are short.” so true. where oh where are the years going? it seems as if we just brought home this tiny little thing wrapped in his swaddling blanket, with his wide smile, smart eyes (i know, we all think our children are geniuses, but you could just tell by looking at this tiny babe and tell he was working things out in his brain already) and undeniable sweet spirit. now, here we are 7 1/2 years later. with a crazy smart kid, who by friday was already asking when he could start learning this summer, who loves his brother and family. how did we get so lucky? i know the next 7 1/2 years will fly by even faster, but in so many ways i’m not ready. it’s not that i fear my children can’t handle it. it’s that i’m not ready. i love our long cuddles, our summer nights of playing and watching documentaries, our vacations, our simple yet not so simple life. again, how did we get so lucky?

my sweet baby boy is officially a kindergartener (sort of). he graduated preschool today. i know. a lot of you are thinking: what?!? they let kids GRADUATE from preschool. well, yes. yes they do. it was an awesome commencement ceremony in which my child was the loudest (and of course cutest) singer in the room. i hope that he never realizes that he could have had a microphone…he doesn’t need one! i found his class picture from when he was in the two year old class and it’s hard to believe that picture is of the same child. he looks like such a baby in the picture. how could i have sent him to school???? now, at five and ready for summer break i don’t know if i’m ready for him to be in kindergarten. he says, “two days a week is not enough school, but five? that’s gonna be too much.” cheech is so smart and funny. apparently, all the moms and dad’s in his class know his full name…their kids say, “hey Chet Thomas Gold did (fill in the blank) today.” people flock to him. how could they not? look at those eyelashes, would ya? look at the fun mischief in those eyes. who wouldn’t want to be around that? his kindergarten teacher may disagree, but i think the fun is just begining…