Friday, October 11, 2013

Big Changes Coming

The last couple of weeks we have been going through some pretty big changes and I have turned into a total wreck. Our schedule was pretty set for the last two years. PT on Monday, OT on Wednesday, ST on Thursday, and doctor appointments sprinkled in between. It became familiar and comfortable. I woke up every day knowing what was going on and when. Well....not anymore.

Rae and Anna (PT)
Firstly, Rae has been discharged from Early Intervention as of October 4th and we had to say goodbye to her therapists. I cried. Not a blubbering mess kind of cry. More like one that acknowledges that words can never properly express how much these women have come to mean to Rae. Every word of encouragement. Every piece of transition advice. Every week they were here working with Rae. Rain or shine. Good humor or screaming ball of fury. They became a part of her team and while we may not have always agreed (at least 95% of the time we did), we always kept Rae's best interest first and foremost. I will never forgot how they help shine a light into the darkness and walked with us into the unknown.

Rae and  Karen (OT)
Secondly, we had our very first IEP (Individualized Education Plan) meeting last week. I felt so uncertain about what we were walking into and have heard more horror stories than encouraging ones. Part of me was ready to go battle and the other part of me wanted to just sit back and observe....I could do neither. We have to participate in creating this plan...a legal contract actually. We worked with representative of our local school board to develop goals and determine which school offers the best program for Rae. I toured two schools, our "home" school (about 6 minutes from our house) and another one about 30 minutes away, before the meeting. After discussing the options over with dear dad, we decided we wanted to make the 30 minute commute, which required a special assignment and was dependent on the school accepting Rae. They did within two days!!!

Our first experience with an IEP meeting was smooth and effortless. I'm sure we will have to do some tweaking here and there over the school year, but right now we are pretty satisfied with the outcome. Rae will still receive all of her therapies, has reasonable goals, and will be enrolled at our first pick school. I'm already shopping online for manatee stuff (the school mascot) and found the cutest pair of socks!!!

These socks can be purchased at Manatee Gifts Galore.
Thirdly, we have a new specialist...a GI doctor. We went because Rae was having a rash of unexplained fevers and we wanted to check her aspiration (better? worse?) The concern was that it had gotten worse and we needed to go from "nectar" to "honey" (liquid thickness) and go back to pureed foods. I had already started making that transition just to be on the safe side. Towards the end of the appointment the doctor asked me if any other doctors have mentioned a G-tube. I wept. Right there. In her office. I could not pull it together fast enough. It is the first time I lost it like that in a doctors office (except when my own doctors mention thyroid cancer...luckily it wasn't cancer...just HUGE and now it's gone). The one thing Rae has been able to maintain and loves is eating. I felt like Rett was coming in to steal something else from my baby.

Yes, there are many pros and cons to a G-tube and we have to weigh them all against each other, but I'm not going to get into all of that just yet. This decision requires more tests (another modified barium swallow and an upper GI...completed this week) and more consultations with her doctors. We aren't jumping into the surgical room at this point. I'm still wrapping my mind around the words and what that means for all of us. In the end, whatever is in Rae's best interest will be the direction we go.


These last three years have just flown by and I know the years ahead will move just as quickly. We didn't have a big party...heck, we didn't even have a small party. It was just immediate family this year and we were able to include my brother and his family via Skype. Being able to share her birthday with them made it even more special.

One to Grow On

Did anyone else get birthday spankings? The kind where everyone lines up to playfully swat your behind and laugh at your protests and/or embarrassment. I can remember such occasions, but it stopped many, many years ago. I don't think anyone really liked this particular birthday celebration fun torture, but what I do like though is, "one to grow on." It's like a stinging promise that you'll get another year (and maybe your family/friends will get to give you a few more swats). While we didn't give Rae a birthday spanking this year (not ever gonna happen), we sure are praying for "one to grow on."

We kept her birthday celebration simple this year and only had family come to the house for dinner and cake. Rae tore though her presents (with a little assistance) and daddy helped her blow out her glittering pink #3 candle. Muncle and his family were able to join in the festivities via Skype which made the evening even more special. As usual, I took plenty of pictures...

For any birthday celebration you HAVE to have balloons!
Added bonus, Rae likes to use her hand to hit them (it counts as therapy...right?).

Talking with her Muncle and cousins.

See how happy she is talking to them!

Time to make a birthday wish!!!

Of course you have to have presents on your birthday!

It's Trolley!!!
(Daniel Tiger's Neighborhood)

It's Wall-E! Thank you Ms. Shana!

It had to pass the taste test.

A new winter coat from Aunt Nancy and a tooth fairy pillow!

Time for a check-up!

A new book for all those trips in the car!

She LOVED the cake, but wasn't so sure about the raspberry first!

Even Moo-Shu indulged her sweet tooth.

Tuesday, October 1, 2013

Rett Awareness Month

Today marks the beginning of Rett Syndrome Awareness Month. It is our first. One of the new milestone in our lives. Until this year, the month of October was reserved for breast cancer awareness (for me at least I know many groups use October for awareness) and pink everything. I would go to Panera's several times during the month for a deliciously sweet cherry pink ribbon bagel and maybe go on one of the many charity walks. I had no real connection to breast cancer outside of the fact that I am a woman, which honestly is enough, but this year it is different. VERY different. I now have a cause to truly rally around. Something so close to my heart that it has become a part of me body and soul. I can only imagine this is how others with a cause feel. But calling it a cause isn't really enough. It is more like a quest. A quest that will only end when a cure is found.

Here's some quick facts about Rett Syndrome from GP2C:

  • Debilitating neurological (movement) disorder that predominantly affects females.
  • Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old. 
  • Caused by a single gene mutation that leads to underproduction of an important brain protein.
  • The most severe form of autism.
  • The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.
  • Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.
  • As prevalent as Cystic Fibrosis, ALS and Huntington's.
  • Another little girl is born with Rett Syndrome every 90 minutes.
  • Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.
There is hope! Researchers are diligently working towards finding a cure for Rett Syndrome and believe their work will further research for other syndromes and diseases like Autism, bipolar disorder, and Alzheimer's (to name a few). You can help by supporting a Rett family (really any family with a special needs family member). Here's how...

Think small. Yes, you read that right...small. The BIG stuff can be intimidating, so just think of small things you, your family, your church, your school, your company (just about anyone or any organization) can do. Here are a few ideas from the 20 Simple Things List:
  • Simply smile and say hello. I love it when people smile at me and speak to Rae (especially kids)!
  • Help a family out by offering to assist them with yard work, cleaning their house, or making them dinner. These things often get tossed onto the back burner.
  • Invite a family with a special needs child to a function. Offer to help with the child so the parents can talk and enjoy their time. Many families do not get out much because it can be very difficult to manage all by themselves.
  • Plant a Garden of Hope: In exchange for a $1 donation you can sign your name on a beautiful flower. 
  • Dress Up 2 Cure: Who doesn't LOVE playing dress up??? Students can dress silly for one day and bring spare change to donate towards a cure for Rett Syndrome.
  • Rockin' for Rett: It's a fun time for all! Crank up the music featuring local bands, local businesses, and fun, Fun, FUN!
  • 31 Tweets/Posts for Rett Syndrome. Go to the GP2C blog for samples of tweets and postings to help spread awareness.
  • Hang a GP2C banner up. (to purchase click here
  • Rock a GP2C shirt! You'd be surprised how many people ask me about Rett when they see my shirt. (to look at merchandise and purchase click here)
Aunt J rocking her GP2C shirt at school!

Raising awareness is that easy!