My name is Bianca Beck, I'm just a young woman with a big heart trying to make a living at home. Housewife, artist, entrepreneur, stay at home mother of a special needs child with Schizencephaly. My goal is to spread awareness of this extremely rare developmental birth defect and help out my little monster day by day. I currently reside in South Florida. I have nothing but pure intentions.
Skylar’s first IEP evaluation was this morning, I was up all night pondering how he was going to preform for everyone since I wasn’t going to be in the room. To my surprise, he did absolutely incredible. Started out very timid considering he was in a small room with three strangers, but he was doing everything he’s learned, crawling up steps, pointing to body parts and clothes- I didn’t even teach him how to point to his shirt and shorts yet and he did it! He also was using his communication board and was signing “more” while they were playing with bubbles and tossing a beach ball back and fourth. And on top of that he showed them his new sign he learned yesterday in therapy, “fish”. He was a complete ham.
On top of this, the hospital finally called me back and my audit letter for his hell of a ER visit last time he had a seizure went through, I don’t have to pay. Today is a wonderful day and I am incredibly thankful.
All kinds of new bows up for sale, and some of the new accessories. Check them all out here. More tomorrow, I’m off to bed.
Bianca xo
Introducing the mermaid bow, one of the new creations. Apparently my camera kinda works (kinda is very big exaggeration), I am much too impatient for a new camera to come along so I’m working on some listings now and hopefully finishing them tonight. Bows + accessories now, the rest tomorrow.
Went on a shopping spree today at Target for Skylar. Got some new clothes, books, flash cards, and a hat for my handsome little man. This week he learned 4 new animal sounds, bent over while standing to pick up a ball for the first time (instead on sitting back down then standing again), knows where his teeth are and is learning ears/eyes; and learned his first sign in speech therapy- “more”! Every day is something new. I am happy to say I am officially done revamping my shop and now looking out for a camera, although I plan on adding a few new products in a couple weeks- but I am ready! Hope everyone is doing well, Skylar’s IEP is next week so we’ll see how that goes :)
Bianca xo
Listened to this on repeat all day. Today I spent 5 hours on my hands and knees and scrubbed the entire tile in the house, 4 loads of laundry & worked out. My body feels like death but I can’t shut my mind off. Too happy and anxious.
Within an hour I rekindled an old friendship with a phone call and got asked to be a bridesmaid, Ian told me he couldn’t wait to sail the world after we have 2 more kids…. You want more kids? Yeah, don’t you?
What? Did that really just happen?
Skylar physical therapist is coming over with one of the other mama’s in the therapy program with her daughter Mia who has cerebral palsy. Can’t even begin to express how excited I am to finally meet them in person. I talked about starting a play date group forever ago with the other special needs kids in the area, so Skylar and the other children can get some much needed social interaction.
I am so excited :)
Wore my new dress, today hasn’t been very good to me. I’m running on no sleep due to worrying and the day is still dragging on. I had an almost 3 hour review today with Early Steps followed by over an hour of therapy. I can’t focus and want to pass out every time I stand. Anyways, I filled out an ton of paper work with Skylar’s therapy program and we went over the questionaire for his development, or where he “should be”.
Nothing like a dose of reality of where your kid “should be”, bleh. She told me that he’s in the developmental range of a 1 year old even though he’s almost 3. I wanted to cry for every box I checked no, which was basically every single one. She kept talking to me like I was transitioning Skylar into school, even though I made it very clear I wasn’t going to follow through and continue to work with him at home and with the therapists because he’s making more progress one on one.
I have heartburn just thinking about all of this. I can’t wait to go home.
This handsome man has been serenading me for almost an hour. I could lay here all day listening to him strum his horribly out of tune acoustic. When he plays it’s like angels singing. You are so awesome little man.
A few of the last turbands I sold were gifts for cancer patients who are undergoing kemo and shaved their heads. Cancer has never personally touched my life (and I hope to God it stays that way), I can’t imagine the emotional turmoil it causes. They were given to make them to feel pretty and feminine even without hair. Although I’ve never met or know the women they were given to I’ve been thinking of them often.
I haven’t been sleeping much at all lately because I have a million ideas and thoughts running around in my brain. One of them was to donate turbands to cancer patients. Have people send me their story, or you can send in a friend/family members story and I’ll feature someone every few weeks and send them a turband(s). I don’t have any disposable income yet, or enough free time but it’s something I’d like to do. I’ll probably end up doing a fundraiser to get supplies. This is just another idea. All I know is that I want to help people, I’ve always wanted to. Ever since I’ve had Skylar it’s been magnified a thousand times.
I wish I had enough money so I could start my Schizencephaly Awareness project, do this, help out the kids in my area get equipment/therapy, make more homemade products for special needs children, help my mom’s family out in the Philippines.
Wish I could help everyone.
100 hair bow pile. 30 turbands, 20 hair band/scarfs, tons of appliques, working on new turbands, still waiting on more supplies for new products. Still not finished, or have a camera but I’m always working. I need sleep and a strawberry mango smoothie.
PS- Skylar did awesome during speech therapy today. He mimicked 3 animal noises with this fischer price farm toy and acted like a total ham. No screaming/hitting/biting the entire session. It was awesome. Hope you guys are doing well!
Also, if you want anything be sure to check out my storenvy because I’m letting go of alot of the products on there once I’m finished!
Bianca xo
Picture dump. What have I been doing the past two weeks..
Anyways, that’s what we’ve been doing. Super busy working and with Skylar. Now I’m working on a new shipping method because for some reason smaller packages of mine are being delayed (damn you usps), and going to hobby lobby later to get more supplies. Hope you’re all doing well, more updates when I have time.
Bianca xo
Working. Severely sleep deprived. Can’t seem to shut my mind off at night. In need of some coffee & company. & another sneek peek. I have a long road ahead of me but I cannot wait until I’m finished.
