WDW Planning: Tickets, and Dining Plans, and Fast Pass Plus, Oh My!

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We’ve taken the plunge into vacation planning for our first family trip to Walt Disney World and what can I say but, WOW!  Wow as in WAY more complicated than a trip to good ol’ Disneyland!

So, what have I learned so far?  You need at minimum six months in advance of your trip to plan and book anything you want to do.  This is the minimum if you want to book the Hotel you want, and get reservations at the restaurants you want.  That said, if you are not picky (or have a big budget to play with) about where you stay or are not into character, themed dining.  You can still plan with a shorter amount of time.  We are not those people!  Our “August” trip has now been pushed out to ensure we can make the reservations at some of the fun restaurants and character dining.  The basics to get you going… Book your hotel, Purchase a dining plan (this aides in booking your meal reservations,) Make your meal reservations (180 days out!) and finally just a couple of months before, book your fast pass plus!

If you are planning your first trip, there are some great websites (and YouTube videos) out there to check out and assist in your planning:
www.wdwprepschool.com
www.touringplans.com
https://disneyworld.disney.go.com/

I am certain I will have more to add to all of this going through this process!

Girl Scout “Goal” Sweatshirt

Every year I make a goal shirt of some sort for my daughters Girl Scout troop so they can publicize their goals for their sales.  This year’s design is for their Bronze Award… A buddy bench to be installed at their school.  It will be a fun thing to add and leave their mark as this is their last year.

My design process always starts here – I’m lucky to have a computer geek of a hubby who sometimes does the designing for me to create with… This was one of those cases.

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Once it’s designed, I send it to my Silhouette and the magic begins!  The HTV is sent through the cutter.

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It then needs to be weeded

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Once everything is weeded and ready to go, I use a heat press to apply the design to the shirt.  This year we went with a multiple color design on a sweatshirt (It’s cold this year!)  Here is the final product.
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Meow!

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A couple of weeks ago, I saw a girl with a bedazzled cat ear headband… I went searching on the internet and alas no one is selling them anymore.  So today, I tinkered around with some wire, beads, electricians tape, a blank headband, and ribbon.  The beaded wire ears were attached to the blank headband with electricians tape and then I did a standard woven headband over and around the wires to create my own pair of bedazzled ears.  M-E-O-W

Run Disney Run

A New Year is here and while I wouldn’t call this a resolution, I will call it a goal for 2016…

I want to run a 5K at Disneyland!

Turns out it’s already too late to register for the spring runs so, I am setting my sites on the Avengers 5k in November. My hope is to get my booty in gear and start walking and pick up the pace to running through the next couple of months. Hopefully, I can get healthier along the way and ultimately have fun with this run and achieve a cool medal to call my own!

To learn more about running events at Disney, check out: http://www.rundisney.com/

A lot buzzing through my head

So much going on and yet nothing happening.

My brain is working on overtime with all of the new information that is slowly coming out about Braeden. Neurology states his brain looks good (huge relief!) But, then you ask why does he have so many issues. He stumbles around with the description of a Global Delay which really doesn’t mean much in the real world.

He had his IEP and his qualifying factor of speech delay is slowly improving which is great but, it’s the reason he is receiving other services which he really needs. So, if that goes bye bye… so does everything else. Right now, he’s scheduled for a follow-up IEP in June and he will most likely lose services at that time due to a loss in a qualifying factor. We are scrambling trying to prove he has a need for the extra services right now.
Sorry if this is all over the place, this whole process seems to be too so, it’s no wonder I can’t focus a single thought.

For right now, we are awaiting Neurology to order his genetic testing (which takes 3 months to process.) We are awaiting an appointment to have his legs fitted for Ankle Foot Orthotics (AFO’s) to correct his legs from the orthopedic, we are awaiting a call from the surgeon and his GI to discuss the muscle issues happening with his esophagus. The only thing we can derive from all of this is that it all seems to be muscular related. Though we know it’s not a neuromuscular disorder.

I’ve been researching and researching and from the best I can tell, we are dealing with myotonia congenita a congenital muscular disorder/disease. I am not a doc, so we don’t know for sure but it’s certainly what I am trying to find more about… there are two conditions known with this called Beckers Disease and Thomsons disease which both seem to have a lot of the symptoms Braeden presents. Though, it’s likely we won’t know until the summer what the tests show and what this really is. It definitely feels all muscular related. So for now, we treat the individual areas, continue to go through necessary testing, and hope for some answers before Braeden loses his services in June or starts Transitional Kindergarten in the fall.

Another Curve Ball

It’s been a while since I’ve been on here but that seems to be the case with me. This blog is my therapy and I seem to post when stuff is happening. Here’s to my free therapy because life has thrown us yet another curve ball.

Looking back, my last post was the day Braeden had his G-tube removed… 12/12/12. A great day and I’m happy to report all is still good in the land of eating. Other stuff, not so much.

We have always known something just wasn’t quite right with our little man, but it’s always and I mean ALWAYS been deemed a “Global” delay. No one has ever added up all the variables to equate it out to a diagnosis of something. Very frustrating. When your child has “Something” you can look at here’s the problem… here are some solutions or things that work for that particular issue. With a Global delay, you handle stuff as it comes up. The latest issue to “come up” was B’s toe walking.

B had an IEP (Individualized Education Plan) meeting right at the end of the year where he was approved for Physical therapy offered through the school (for anything school related.) During this meeting it was strongly suggested that B see an Orthopedic doc and a Neurologist due to the toe walking and other issues like his high and low muscle tone (not new stuff here.)

We met with the Ortho doc yesterday and after taking a few x-rays it was determined that B doesn’t have any skeletal issues. Which is great but it also means it’s something else. In talking with the doc about other things going on… drooling, scar tissue, language delays, swallowing issues… All is pointing toward Cerebral Palsy. This is not an official diagnosis, as B still needs to meet with the Neurologist and go through testing there but, it is strongly suggesting this may be what B is dealing with.

As most of you know, B at birth was fine and things went bad and he ended up needing procedures early on. His first procedure he wasn’t even 6 weeks old and crashed five minutes in and needed to be intubated. He was very difficult to intubate and we are still not 100% sure how long he was without oxogen. I believe this may be what caused his possible diagnosis.

Right now, I am upset, scare, nervous, and exhausted. I want his Neuro appointment now but have to wait until the 29th. It’s torture not being able to talk with them and see what their perspective is and of course get testing. In the meantime, he will begin Physical therapy again outside of school and is being referred to get leg braces to help him walk flat.

The upside of this is we may actually start having some understanding of a lot of how our son is. The Ortho doc stated that the fact he is walking is a good sign, most with CP either don’t walk or need a lot of assistance in walking. So if this is in fact CP, he is high functioning.

So, for now we wait and hope.

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