Katie Verdecchia's Journal
On our way to the Conference
Written Jul 19, 2012 4:46amIt 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!
Three Parts, The bad with the good.
Written May 24, 2012 9:12am
Part One- Seizures Are back:
We knew it was a possibility.It is with trepidation that I write you. Katie was displaying a couple of staring like episodes (that started around January - about 3-4) that we could not physically manipulate her out of, so an EEG (one hour) was performed on 13 April 2012 and we sat down with the Nuero to discuss the results on 1 May. The EEG is showing a marked increase in spikes on the right side of her brain (from the EEG a year ago), and there were a couple of jumps to her good side of the brain and possible spiking on the good side. (Katie had 3/4 of the right taken out, and a small occipetal lobe left but disconnected. ) If I understood her correctly- they are not 'seizures' as they are not 10 seconds or longer, but that they are a definitive increase in spikes that will eventually present into seizure activity if left untreated.
Dr Mettrick recommended starting Keppra immediately and Brian (hubby) balked. He wanted to run it by UCLA. We sent the info to Dr Mathern and the epileptologist team at UCLA. We really wanted an epileptologist who was familiar with hemi EEGs to look at it. They got back to us today, confirming what DR Mettrick saw and we are going to start the medication Keppra, which we did last Thursday. Saturday Katie had an actual cannot deny it any longer seizure and we had to up the dose from .75 2x's a day to a sudden 2.5ml a day. We are hoping that the medication will dicontinue the EEG seizure activity. Currently there is no talk of removing the remaining small portion in the right side of her brain, but we are going to look into VNS implant.
I still do not regret the surgery, not one bit. I say our quality of life is so much better than before. I am still very much a brain surgery advocate if you feel it is a possibility. If we can control with seizure meds- yeah! So now- we wait, and see if further testing is required . the good news is that the seizures are not the debilitating Infantile Seizures she was having before surgery AND Julia (her AS sister who had the same surgery) is still seizure free!
Part Two - Autism Diagnosis
Katie went to part two of Autism testing yesterday and scored 43 out of 60 on the Autism evaluation testing. Anything over 30 shows possible autism traits. He diagnosed her with 'On the Austism spectrum:secondary to Aicardi's Syndrome' meaning another syndrome is causing the Autism. On 27 June, we go in for an 'ADOS' test which will place her on the Autism spectrum. We get the results from that test on 2 July. We really needed this diagnosis for therapies and to help better Katie's education and to help fix our expectations and behaviors. Basically, with ABA therapy (which has been wonderful) and classes, we can learn how to raise Katie better and help reduce possible overloads and meltdowns in the futre. We have had a few light ones, but nothing major. Our concerns are preventing them the best way possible and getting Katie the treatments she needs. This is good news the Autism evaulation news.
Part Three- Katie on Mother's Day:
Ok so now to end on a good note. Katie is doing fantastic cognitively. I took her to the Children's museum a year ago and she really did not do much. This time she interacted and engaged herself in the many activities. my camera ran out of battery, but I still got some great stuff!
So we celebrate the many accomplishements Katie has learned and celebrate that the EEG activity is NOT the debilitating infantile spasm associated with her disorder. Look at that picture- my daughter is running!
Katie and her Augg Comm device
Written Mar 9, 2012 8:31amKatie is doing so well using her Augg comm device we call 'The Talker' . there are photos of her first Haircut too! She did so well. She went in and used her talker to say 'Hi' , 'My name is Katie' and 'This is my talker, it helps me speak' when she arrived, and Goodbye when she left. They ladies were cooing all over her. Also the kids loved her at the Sip and Play. They wanted to play on her talker, but we told them that is her voice. They seemed to understand and watched Katie and her talker while she was there. Here are some pics, and videos of Katie and her new Elmo Chair and with her talker.
Her real device si 8 weeks out (missing a part) we are real lucky to have this loaner from one of Katie's AS Sisters while we wait for it.