Doose Syndrome

Myoclonic-Astatic Epilepsy (MAE) or Doose Syndrome is a rare form of childhood epilepsy that contains many seizure types and is difficult to control. Our journey started in January 2012 and this blog is to let family and friends follow us on our journey. I hope this blog also helps educate people about epilepsy and Doose Syndrome.

Michelle

Sunday, February 3, 2013

Survived 1st Keto Birthday

Wow - I haven't posted in awhile!  :-)  I had to commemorate that we survived Joshua's 1st birthday on Keto - yahoo!  When we started diet therapy (will be 9 months on Tuesday) one of the things I feared the most was his birthday.  How were we ever going to get through his birthday when he can't have cake I wondered.  At the time I thought "Well, that is months away - I will deal with it when I have to".  It snuck up on me faster than I thought it would, but it ended up being so much better than I ever imagined. 

Joshua turned 5 officially last Tuesday on January 29th.  We had a quiet celebration at home with just the 4 of us, but Joshua got a special "treat" - his birthday keto cupcake!  A few weeks prior to his birthday I emailed Joshua's dietitian (Nancy) and asked for cupcake and/or cake recipes that I could use for Joshua's birthday so he would not be completely left out.  Nancy created several recipes for us to try in our ketocalculator and I was so grateful.  The weekend prior to this birthday I started to make the "practice" cupcake and it turned out great.  It not only tasted like a "real" cupcake, but also looked like one (including keto friendly frosting - aka whip cream).  Joshua LOVED his practice cupcake so I knew he would love it all the more on his birthday.  He saw me make it the night before his birthday so he was excited about it all day and could not wait.  We sang Happy Birthday to him after dinner and he had the biggest smile on his face as he ate his birthday cupcake.  He was sooo happy and I was so glad we could still make his birthday special. 

Yesterday we had his birthday party at Super Jump Party Zone (a bounce house type place).  This was super special to me because his birthday party last year was scheduled at this place, but when he started having so many seizures I cancelled his party there and moved it to a bowling alley.  I was just way too nervous to have him in a bounce house while he was having so many seizures per day.  Last year's birthday party was really hard for me - he was just not "himself".  I can hardly bring myself to look at the pictures from his party last year as he is having absence seizures in so many of them and it just breaks my heart.  It was the beginning of a hell that I hadn't even fully known yet and it was just starting. 

It was awesome to be able to give Joshua his bounce house birthday party this year!  I was still a nervous wreck throughout the party and watched him very closely, but he did great!  He had so much fun and had enough energy to run around.  He did get tired a few times and had to take breaks, but he had more energy than we have seen in almost a year.  We had no food at the party except for cupcakes as I thought it would be too hard on Joshua otherwise.  I gave Joshua his special keto cupcake first with a candle that he blew out and he lit up when he saw it.  He really loved everyone singing "Happy Birthday" to him and being the center of attention.  He ate up his cupcake just as quickly as he did the 1st time and not once asked me for a "normal" cupcake like I had for the other kids.  Instead of focusing on food, we focused on friends and playing and that is what is most important anyway.  He had a great time at his party and it warmed my heart to see him so happy and full of joy. 

Below are a few pics from his birthday party and one last time I just want to shout "We survived our 1st birthday on Keto!!!!". 

Playing Skee Ball

Playing Fuse Ball

Going down the big slide!

Look how steep that is!

With his two "besties" - Kendra & StellaAnne

So happy!

Blowing out his candle


Enjoying his leftover whip cream

The "gang"

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