Hello World!

Hi all! Sooo sorry it's been so long since the last post. So much has happened since last year. On Sept. 12, 2010 we lost my husband's grandfather(raised him), due to a surgical procedure that went terribly wrong. This man was Bray's world and he had a realllly hard time with this. We also lost my grandfather(raised me) on May 7, 2011(Bray's birthday :( ), due to cirrhosis of the liver. It's been a rough time for both of our families.

This summer went by so fast! We took a vacation to St. Augustine, Fl. The kids had an awesome time. We stayed so busy with both of our grandmothers and the kids that Timmy and I didn't realize that school was starting in a blink of an eye.

With that said...the kids started back Aug. 2nd! Bray's in the 2nd grade and Mac is in kindergarten. :) I'm so proud of my "babies". I'm even more excited to announce that Bray has a sign interpreter this year! Bray really likes him and school has been going really smooth for him so far this year.

Happy school year to all of our friends all around that are just starting back!

Give and take

I'm learning how to do this...b/c I'm just a straight forward person that wants the best that can be offered. Sometimes it just can't happen that way for various reasons. We're still working on getting everything settled for Bray at school. To make learning easier for him and help him in the best ways possible. Our school system has had cut backs, much like every school around the country. Also the area we live in just doesn't have the resources for Bray. So we're being creative and making the best of it.

Monday I observed Bray's classroom to see how he was doing. I took mental notes of things I liked and didn't. Today we had a meeting with all of Bray's teachers to talk about Monday and really explain PANDAS to Bray's new teachers. We came up with some new plans for reading and I'm looking forward to seeing how he does. On speech therapy days Bray won't have math homework. Instead it'll be sent home to do over the weekend, which will help with getting him to bed on time Tues. and Thurs. nights and give him a little break.

I'm patiently waiting to see signs that the antibiotic is working for Bray. Tonight was the best so far. He didn't fight to do his homework even though it was a long day due to teacher meeting and speech therapy. Teachers reported that he's been fine at school and now know what to really look for. I'm praying the antibiotic takes full effect this time.

I got a report that Ms. Mackenzee and a little girl in her class thought it would be fun to pull the fire alarm. Though the teacher said Kenzee was the one to push it up to stop it, she still got in trouble. We had a talk about why we don't touch the fire alarm and how important it is. Hopefully we won't have that problem again. Kids are so nosey and intrigued by everything! Slowly Kenzee is bringing home homework and is very proud to be sitting at the table working like a big girl like her big brother. I've been working with her on writing her name. Why I ever named her something so long I'll never know! Haha..poor kid. She must have finally decided that she's hungry at lunch b/c she's eating everything in her lunch box now. At first she was talking to much and was running out of time. :) I guess the newness of school may be wearing and she's falling into the routine.

Good day :)

quick update:

Bray made a 100 on his 2nd spelling test! So proud of that guy!

He had an appt. with the audiologist today to have his ears mapped. It was true that his right was too loud and hurting his ear. His levels came way down, but all is well now and he is much happier.

He also had an appt with his new PANDAS doc. She decided to start him on azithromycin full dose for 2 weeks and then a continuing dose 2x a week for 3 months. If things dont get better then we will do a steroid burst. She ran some test today and we will be called with results later.

Its been a long day and Im off to bed! Good night folks!

Sometimes you just want to scream HELP!

Where to begin??? I spent the first two weeks of school fighting for Bray's rights. Educating myself on our rights and laws. Speaking with a number of people about the situation. To accomplish not much of anything. Just know I'm still fighting... Bray was doing really great at school the first and 2nd week of school. He made a 90 on his first spelling test. He was suppose to be taken out of room for the test, but the teacher mistakenly give him the test in class. Which is awesome that he scored so well in class! He made an 84 on his sight word test. He's doing fantastic in math. That's his strongest subject. He's really struggling with reading, due to his comprehension of stories and words he has no meaning for. :( We're working on all this.

Bray was only on antibiotics for 2 weeks over the summer to control the PANDAS. Let me tell you. It was the worst summer of my life! Bray was at the worst we've ever seen him! I've been very worried about school starting and his specialist not returning our calls over the summer. I knew Bray was in one of his episodes and that this would be hard for him to start school. Everyday after school he comes home and has a huge emotional breakdown. We're not really sure why. If it's b/c he's held in his tics and been on his best behavior all day or if it's b/c he's exhausted from working so hard to listen, hear, and speak.

Finally after 2 weeks and a few days it happened. He lost it at school. On Tues. he refused to do his worksheet. When they finally talked him into doing it he refused to use a pencil and only would use a red crayon. They explained what happened in his parent/teacher notebook and sent the worksheet home along with a new one to be done correctly. That leads me to homework. This kid comes home with an AR book, classroom reading book, a math worksheet 3 nights a week, sight and spelling words to be gone over every night, and any classwork that we have to review with him, on top of speech therapy 2 days a week and working on 100 signs a week. :( Try doing all this with a child who's just HAD ENOUGH during the day and can't take anymore in the afternoon. It's been nearly impossible and I've gone to bed crying every single night almost it. r

He's been telling us his ears are broken and he can't hear us or that it's too loud and he can't wear them. Which both could be true due to the PANDAS and how it affects his cochlears and hearing. Or this could be just b/c he's sick of hearing what we've got to say and just wants peace. Though we all know Brayden HATES his cochlear implants. Always has. We have an appt. tomorrow with his audiologist to have his ears mapped and also an appt. with his new PANDAS doctor to start a new course of treatment. I'm looking forward to tomorrow!

Since school has started he's had an eval with the audiologist and his test scores came up half! She felt that if he was able to function better at the appt. he would have scored higher than that. We won't get into that right now. Let's just say we were lucky to get the test done due to behavior. His speech therapist is also doing an eval to see how far he's come since last year. Due to his inability to pay attention yest. we had to cut it short and couldn't finish the test. SO hopefully after tomorrow he'll be put on an antibiotic and start doing much better. If not....you all may just hear me SCREAM HELP!!!!! all over the country!

Mackenzee started pre-k this year and is doing awesome! She loves school and has made tons of friends. She's even taken a liking to two little boys. Watch out now! :) I feel so alone at home without the kids, but haven't really had a chance to enjoy it with everything going on with the school, meetings, and appts. Maybe soon things will chill out b/c I sure could use a moment of peace!

Vote for Project PANDAS!!!

www.refresheverything.com/PANDAS

We are trying to get votes up to get us in the top 10 spot for the Pespsi Refresh Project. Currently we are in 25th place! We are in the running for $50,000 dollars towards research by Dr. Cunningham. This money will greatly help kids like my son with PANDAS. Please take a moment to create an account and vote. Vote everyday until the end of May. Thank you all so much!

Happy Birthday to my kids!

My kids are now 4 and 6! Where did the time go? Mac's birthday was April 28 and she turned 4! Bray's birthday is today and he's 6! We had a birthday party for the kids along with their cousin Bailee last weekend. Today we had a field trip for Bray's class to the beach. He told me he had a beach birthday party at school. :)



Pics and updates to follow. :)

Our life these days...

The kids at Aunt Jenni's helping put up corn.

Bray has been on and off antibiotics since Nov. We've found that azithromicin does the best for him in terms of his behavior getting better and the tics slowing. We recently found out that autoimmune disease and antibiotic usage(longterm) affects Bray's maps and hearing. Meaning that one minute his hearing will be 100% and the next it could be little to nothing. We're having to keep a close eye on his hearing. His maps can change without warning. At this point we don't really know what he's hearing from moment to moment. He's getting better about telling me when he can't hear though. This gave us a huge insight to why he still hasn't caught up with his spoken language. Since finding this out our audiologist suggested that we go back to total communication. We had an IEP meeting at the end of the year to make the changes to include total communication and ASL. We have a great IEP team. Bray finished up basketball season and earned himself a trophy. He's very proud of it and I'm very proud of him. Both kids played t-ball this year and got a trophy. We quickly learned that Kenzee is more the cheerleader and not so much the athlete. Kenzee will be starting school this year. She will be in pre-k. I had my first meeting with her teacher Thurs. This coming Thurs. is open house for both kids. School starts back Aug. 2nd. I couldn't be happier...I mean I'm so excited for them. ;) This has been the toughest summer so far. It's been really hard for Bray. For whatever reason Dr. T spaced out his contact with us to every other month. We've since found a holistic pediatrician that will work along side Dr. T and hopefully get Bray back on track. He hasn't been on antibiotics all summer and he's worse than ever. He's been extremely defiant, ADHD, and aggressive. He's not sleeping well at night b/c he's having such bad night terrors. Even when he crashes on the couch in the evening he's having them. :( I continue to learn as much as I can about PANDAS and how to help Brayden.

As for the summer.....We've spent much of it by the pool and a few trips to the beach. I was hoping to get Bray caught up on some things for school through the summer, but that's been impossible with his behavior. He also hasn't been in speech therapy all summer. I've done my best to work on speech as much as I can. This week we're taking both kids school shopping and that's all they've talked about. :) I hope everyone is enjoying their last days and weeks of summer. Thought it was a tough one for us, I still enjoyed having the kids home.