Character Breakfast

On Saturday, my sister and I took AnnaKate to the local children’s theatre fundraiser, a Character Breakfast. AnnaKate loves giant things in a costume (like the Chick Fil’A cow) so I thought she would enjoy this.

A few of AnnaKate’s friends from her school were there and we enjoyed a great breakfast before the character parade.

Sweet Anna…

Funny Calvin…

AnnaKate loves Sarah…

Who doesn’t love the Cat and the Hat?

 

This is cute…you can see AnnaKate signing to Snow White to “open” her apple.

 

Out of all the characters that where there, AnnaKate loved another little girl dressed up like Tigger the most! She kept going up to her and hugging her!

What a fun way to spend a Saturday morning!

Have I ever told you…

Have I ever told you that…
I truly dislike IEP meetings?

Have I ever told you how hard it is to listen to the negative aspects of your handicapped child when you try to live your life for the positive?

Have I ever told you how hard it is to sit at a large table with others and listen to words spoken about your child like…
delayed….at-risk…mentally disabled…slowly progressing…significantly  lower… unable to communicate?

Tomorrow is the day. It has felt like a black cloud looming for a few weeks. I have been through IEP’s before and I will sit through lots more…but I don’t like them. AnnaKate has a great school with wonderful teachers and therapists that love her, but the clinical nature of the meeting always overwhelms me. The focusing on what AnnaKate can’t do and how far behind she is makes me sad. The other 364 days of the year we live in a world of what AnnaKate can do. We celebrate the smallest accomplishment and the everyday successes. You know…the ones that don’t show up on a test.

But….I will go and I will be strong because this little girl is the light of our lives and we will do anything for her!

News and Updates…

January and February used to be slow, boring months! Not any more! I can hardly catch my breath.

Current medical fun…Neurology

AnnaKate presented a few seizure like symptoms so we decided to have an EEG a few weeks ago. Those sure are fun! The whole sleep deprivation part was daunting but we made it through as we always do. The results of the EEG did not show any seizure activity that day but did show signs of possible agenesis corpus callosum. We had a brain MRI last week to confirm those results. So…AnnaKate does have a thin corpus callosum but everything else in her brain looked good. ACC (agenesis corpus callosum) does not seem to run hand in hand with RTS but pretty common in special needs kids. It can cause developmental and learning issues but in some cases presents no problems. Do any other RTS families know about ACC?

AnnaKate has had a cold, I am getting it and sleep is becoming tricky again but spring is just around the corner! I can’t wait…

A Second Helping

Apparently AnnaKate was not actually finished eating dinner tonight…she went back to the table and got her bowl and took it to bed for a second helping. Yes…macaroni and cheese and peas in bed…oh my….

 

 

 

 

 

 

 

*And yes…as all good blogging moms do, I took pictures then took the bowl away!

EEG Fun…

AnnaKate had an EEG today to look for seizure activity. We have suspected that she may have had a few seizures and we wanted to have it checked out. The EEG itself was pretty easy, the hard part was that AnnaKate had to be sleep deprived to help with accurate results. She could only sleep for 4-5 hours the night before. To keep her awake and active, I took her to the mall and closed the place down! We then came home and played until 11pm when she had a major meltdown. We got her up at 4am which was a lot tougher than I thought. She was exhausted and just cried. We made it to the 7:30am appointment and AnnaKate did great while they hooked her up.(It is nothing compared to a sleep study…) She went right to sleep as she was supposed to, but in true AnnaKate fashion she woke up about 20 minutes into the study. I had to use all my skills to get her to go back to sleep. She eventually did and they were able to get enough information. We should hear some results in the next few days.

*I think the sleep deprivation got to me too…no pictures of the EEG.

Go Ahead and Jump…

AnnaKate LOVES to jump!

Ipad

AnnaKate got an Ipad for Christmas. Sounds a little extravagant for a 4 year old, unless you are a special needs parent and then you understand. The Ipad has become quite the communication tool. I wanted to share how we have been using it with AnnaKate.

First, the case…
I was a little hesitant to get the OtterBox case but after a few negligent tosses by sweet girl…we knew it was the right move. The OtterBox makes the sleek, light Ipad a little heavy and bulky but it is great for protection. It even came with a screen protector that went on perfectly. I highly recommend this case if you have a rowdy child using the Ipad. :)

The purpose…
The purpose of the Ipad is to provide AnnaKate with an alternate way to communicate as she develops her speech.

The apps…
I have spent an extensive amount of time researching communication apps. The gold standard right now is Proloquo2go. It is an amazing communication program. I have not purchased it for 2 reasons:
1. It is $199.99.
2. It is a little more than what we need right now for AnnaKate. I could program it to suit her needs for now but I have decided to try some less expensive and more simplified apps first.

Communication apps we are currently using:
Verbal Victor, Icommunicate and
My Choices Board

We have set up one entire icon screen with all of AnnaKate’s apps. She knows to swipe to her screen to find her apps.

   Here is a screen shot of Verbal Victor. Right now it is AnnaKate’s favorite communication tool. It is very basic and only costs $9.99. I like that AnnaKate can easily move through the screens to find the phrase she may want to say. I can see how she could outgrow this app but it is easy to use and great for our needs right now.

This is Icommunicate. I like this too but we don’t use it nearly as much as Verbal Victor. It is not as easy for AnnaKate to navigate by herself. It costs around $20.00

My Choices Board is great! This helps us with alleviating some frustrating moments in our house. We have created boards for what she wants to eat for meals, what she wants to watch on television, what she wants to play, etc. She loves touching the picture and hearing the word. This app costs about $9.99. Visually it is the most “cute” of all the apps with the neat little clipboard.

Other uses…
I was very hesitant about AnnaKate using the Ipad for non communication things. I didn’t want it to become a play toy and not be used for the intended purpose. I quickly found out that she needed practice learning to swipe, move through screens, etc. So we downloaded some apps that would help with that as well. So these are fun apps but help with navigation too. They also all expose her to language. It was neat for us to see how fast AnnaKate picked up using the Ipad.

Fun apps..
She loves being able to play her own music with Toddler Juke Box.

Peekaboo Barn is a cute app that practices animal names and sounds.

This is a great interactive Maisy book.

Duck Duck Moose has made some great apps. We have most of them. This is Baa Baa Black Sheep. AnnaKate has to find objects, match objects and navigate through the pages.

 

Babies with Ipads (the blog and Facebook page) has been a great resource for us. It lists great apps and also notifies you when useful apps are on sale or free.

The Ipad has become a great addition to our family. It has helped AnnaKate’s communication immensely and has become a fun thing to do together.

*This is a picture of AnnaKate and Billy listening to music last night. AnnaKate was changing songs with her feet! Silly girl…