×

CaringBridge Needs Your Help by December 31st

Make a gift to CaringBridge in honor of Katie and you’ll help even more people surround each other with love and support this holiday season. Donate Now

On our way to the Conference

It has been so long since I posted. I am sorry. Katie is doing well and we have a 24 EEG scheduled for the first week in August to see if the Keppra is controlling the seizures. We see stuff that could be, but those could be 'Hover' seizures (where I hover over her and wonder)

Katie is doing great on in talker, but does not perform on demand. However, we did go to The Claire Fair on 29 June and Katie had a how conversation with responses of Hi, I am katie, How are you, I am fine, with Clair's therapist before she got tired.  But she is using it and she is communicating more and more every day.

We are currently on our way to the Aicardi Conference that happens every two years. We flew to Brian's parents (Noni and Papa to Katie) and was with them for two days before we traveled to Ocean City to see Noni's side of the family. Noni's brother (Uncle Steve and Aunt Tina) were kind enough to let us stay with them. We had a great three days there before hitting Baltimore and seeing Great Aunt Ginny and Papa's brother (Uncle Tony and Aunt Pat) for a fun evening. They had lots of toys! Katie was in heaven) Now we are on our way and will arrive tonight to the conference.

It is always bittersweet. Meeting wonderful people you may or maynot see again. Especially their daughters. This has been a hard year for our girls. Losing at least five since March, and three of them I had met and loved before. Jenny, Ava, Azaria, just three of many we lost this year. I know there will be tears, lots of tears. But there will be excitement and rejoicing too. Many girls made it to another conference like Katie's warrior Hannah who now is an adult!

With this being our third conference (the one I almost didn't make) I feel like a veteran now. I know what to expect and helping sell raffle tickets again and maybe take some pictures. I am not wondering which classes I am going to be  part of, but actually facilitating a couple. I will have a tbale at the expo to help family with the Vantage lite and IPAD links to find apps.

I also wanted to show off Katie. Despite that one seizure on 19 May 2012 at 0800 in the morning, we have not seen any. And Katie is doing well. She has been diagnosed with Autism now (a six month long process) so insurance will recognize her for ABA. I want to show Katie and a scar you can't see unless you look for it. I want to show that brain surgery does not have to be the last resort. It will not be the cure, but it can help, really help.

What have we seen lately?

Katie is mimicking! Her latest game is us mimicking her hand. Whatever her position her hand is in- we copy. (open, closed, and counting to five with her fingers). She has held her cell phone to her ear (may be a fluke) and flying airplanes in the air. But the biggest one? We went to visit Noni's Aunt and there was a Koi Fishpond there. Katie watched me take food and feed it to the fish. I showed her how to do it, and then over and over she would take food out of my palm and throw it to the fish. This was so awesome..forgot the camera /cry

 She has started to roll cars/trucks around on the floor on her own.

She is drawing with a pen/crayon before trying to chew on them now.

She is eating with a fork better and tackling stairs like a pro. She is starting to go down stairs without holding the bar..scary :(

She is becoming s toddler into everything. Getting better at eye contact and waiting. Still working on sharing, but this is improving.

She is asserting herself,One thing ABA has taught us is intense postive reinforcement. We can't stop Katie bouncing on the couch after five times, we must stop it every time. And the other night, after 15+ times of me getting up across the room, Katie sat on the couch. No spanking/yelling needed.

She has reduced her food ball rolling (where she would chew food, and take it out and make it into a ball and proceed to roll it all over herself and table, ect). This is down by 90% when it used to be a 100%, I have only seen it a couple of times in last two weeks. (I am a believer in ABA therapy. ) we give her playdough or something else to roll before and during the day. This has helped immensely giving her a different outlet for her sensory needs. Little by little, we are doing this, training ourselves along with her and the meltdowns can be counted on one hand for her lifetime.

Thanks for still reading!