I am taking the approach that a quick post is better than no post at all. Sophie remains seizure free. I write it so matter-of-factly but I truly want to scream it for the world to hear...especially to those doctors that said she would not be a surgical candidate.
August 30th marked her 3 month seizure free anniversary. One that I am too scared to celebrate. Too scared to get too comfortable.
Sophie started school 3 weeks ago. She goes full day Monday through Thursday. That is a whole different post that I will hopefully write about soon (among many other topics). In the meantime, here are some random pictures...
No...not another EEG.I had to wrap her head at night to stop her from picking at her suture site. She would pick and pick and pick which caused it to bleed and bleed and bleed. For weeks on end, Sophie slept in-between us with one of us semi-sleeping so we could stop her from picking. Because even with this nice looking head-wrap, she was still able to get to it. It is finally almost healed.
First day of preschool. This was the best picture I could find. She was in a daze when I started snapping away.
First day riding the bus (3 days after school started). She rides the bus to school and then I pick her up after school. She is the last stop and the school is only a mile away so she is only on it for 5 minutes...the guilty part of me felt the need to say that. She cried the first day or two but she happily gets on the bus now.
Elsa's first day of preschool. And yes...this is also the best picture I could find. Why are my kids in such a daze on their first day of school once I get the camera out???
Sophie getting a much needed sensory fix. She loves to rub her inner arm up and down stubbly chins. She will actually go up to a complete stranger and do this.
16 comments:
She looks so strong! The little ones are adorable, I love the heartbreaking picture of her getting on the bus!
The kids are all getting so big. Ryan starts pre K next week....hope there's minimal fussing when he gets dropped off!! See you all soon.
Love,
Barb
Love all the pics! Hope Sophie (and Elsa) are doing well in school. Are you loving the "free time" with Charlie?
Such sweet pictures. Right now you feel guilty about her going on the bus, but wait. A few years from now, you can pull that picture out and tease her with it. It's the power of blackmail Elaine! hehehe
As for the dazed looks...don't feel bad. Nearly every picture we take of our oldest daughter looks like she's been drugged or has snuck into the liquor cabinet. No clue why, but she does.
Hope all else is going well in the household. How is that handsome little man doing?
Thanks for sharing all the pics. They are all beautiful. Sophie looks great. And Elsa looks like such a big girl going to preschool. Charlie is just adorable.
Maddie likes to rub my stepdad's stubbly chin. Hmmm, I guess I need to be on the lookout for other sensory behaviors......
Elaine,
Thanks for sharing all the pics! They are amazing and got me all teary eyed. Sophie looks absolutely wonderful, and Elsa is getting so big, and little Charlie too!
I know how exciting and kinda scary it is to voice outloud how long our babes have been seizure free. Kylie has just 17 days more than Sophie (goodness, I am too freaked out to even mark the date). I just pray that it lasts forever, and we never have to return to those terrifying moments.
So happy for you guys and great to see some cute and silly pics of the little ones!
These are FANTASTIC pictures, love them. She's looking great. And if you really want to give Sophie a sensorypalooza, have Brandon shave his head. I am Mr. Stubbly Head almost every day because of the whole bald thing.
Too bad I can't visit and offer my dome to Sophie for some scruffy stimuli!
I was so delighted to see you posted today, thanks for doing it. All your kids are so good-lookin'!
I'll second Ken. I was so excited to see a new post from you! But, gosh, I know how hard it must be to find those free moments!
The kiddos all look fantastic! And Sophie looks like such a big girl on the bus -tears or no tears!
By the way, Austin loves to get that stim on his arms too. I think we've talked about that before? Anyway, one slight brush against his arm will send him raising it up for a good tickle. Makes for good giggles on stubble too! ;-)
Krissy...She is SO strong. Especially during diaper changes ;)
Barb...They are getting big. Especially Charlie. I can't believe he is already 8 weeks old.
Jen...Unfortunately, there is not much free time with Charlie. Elsa only goes 2.5 hours on Monday and Friday mornings and Sophie doesn't go to school on Friday but she does have private therapy. So by the time I do the whole drop off/pick up thing, it feels like nanoseconds.
Adesta...Hmmm, maybe I need to check my liquor bottles ;)
Liz and Holly...Once we were at a waiting room at a doctor's office and a man was bending over playing with his daughter and Sophie ran straight up to him and started rubbing her arm on his face!!!
Jody...I am hoping one day that it will be a day that I celebrate but I'll probably pick some random day instead of the typical one month, one year, etc.
Ken...I should have taken Brandon and Jason's offer to shave their heads if I shaved Sophie's. Then she could have self-stimmed on her own head all day long ;)
Oh girl...quickie is SO better than nothing! LOVE it!
And may I say...you are darn good wrapper! If only I could get Trevy's wraps to look SO cute! That's it...you'll have to come visit...so you can teach me how!
I haven't decided if we'll shave Trevy's whole head...or just let his curls get long enough to help cover? But Jonathan said he wants to shave his in honor of Trevy! I'm not sure if I'll let him either!
Cute pics...
LOVE YOU!
...danielle
I'm glad to hear that Sophie's head is almost healed! Hopefully you'll be able to get some good shut eye soon.
Elsa looked adorable in her first day of school outfit and backpack! Charlie seems so alert in all his pics. He doesn't know it yet, but he's lucky to have 2 sisters to take care of him. Just ask Ed, lol!
It seems that your getting in a good routine with the kids school! Now, Charlie just needs to sleep through the night.
Have a great weekend.
Erin
Elaine....All your babes look SO good!!! I LOVE seeing all of the children I read about....I feel like I know each of you PERSONALLY!
I am so thrilled for y'all that Sophie continues to live seizure free...I can certainly understand your fear of celebrating, though....But maybe one of these days, you will have the confidence to throw a big party!!! And post photos, of course!!!
Take care and try and get some "me" time...I know you must be CRAZY busy with all that you have on you!!!
Cyndi
Sophie looks so cute on the bus even though she's crying. She will love the bus soon. Nora is on the bus 30 min both ways every day and can't get on fast enough in the am. She loves it. All your muffins are beautiful. Love the Harry Potter glasses! Give Sophie a big kiss from Nora.
xo
Lori
Danielle...If I would have known better, I would have shaved Sophie's head (if I had the guts) or at least cut it VERY short because it was a DISGUSTING MESS after surgery. Plus I would have loved to have seen Brandon bald!!!
Erin...Actually, Sophie is no longer sleeping with us!!! Can you believe it??? It's been maybe 2 weeks...I think. She is no longer picking at her head, that is why it has healed because the wraps never really worked. I think she is so exhausted with school that she is sleeping more soundly.
Cyndi...I LOVE seeing other people's kids too. One of these days I'll have the courage to celebrate big and instead of pictures how about a personal invite...where do you live?
Lori...I thought the same thing about the glasses. They are actually out of her Doctor's Kit that was given to her by the nurses that came to visit while on ACTH.
Oh my! That picture of Sophie getting on the bus......priceless! I'm sure that really upset you. Kellen did that to me one time last year, and I was upset for a month! Fortunately though....it is usually short lived and they are fine the minute Mommy is out of site!
Sophie looks great.....I agree about the shaved head. Hearing you talk about the mess on her head after surgery, I'm sure that would have been much easier.
I think Elsa looks so different from Sophie....she must look more like Brandon?? What do you think. She is a doll. And little Charlie.....precious. Can't wait to see them all in person.
Take care....I think of you often!
Jennifer
Jennifer...I think all 3 of them look so different from each other. Elsa definitely takes after Brandon. I think as Elsa gets older, her and Haley are going to look more like each other than her and Sophie. More and more people think that Charlie looks like Elsa but I don't know about that one...we will see.
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