Yesterday my big boy turned 4! It snuck up on us all. With the new diet and training a new puppy our lives have just been crazy! This birthday was so different. It was his first on the keto diet with no special snacks or cake, and it was the first birthday as a child with epilepsy. I look back on last year and remember thinking oh, I wonder if we should start to be concerned with his speech, he doesn't talk as well as the other kids, and does he know everything he should? We didn't know these were signs of something much greater going on in his head. Yesterday I knew he didn't know what other 4 year olds knew, and I am well aware that he is going to be struggling in school for years to come, but I asked him how old he was and he put up 4 fingers and then counted them, "One, two, seven eight". That's better than he's been able to count in a long time! He's still young enough that he doesn't know he's different, and that makes it easier for him. I always think what if I could go back to that day and not give him that flu shot. We could have possibly put this off for years. But then maybe it's better that this all started before he was school aged and we can get things mostly sorted out before he's 5 or 6. Who knows which would be better.
|
His birthday morning pic, have one every year! This year his bed is in our room.... |
We had decided to get Ethan a play house for his birthday. We had picked one out, but of course waited until the day before his birthday to get it. Mike went down to the store and they didn't have it.... Plan B. There was another one somewhere else I liked so he called down there to see if they had it. Out of stock. Ok, there was one other store in town so he called down there. Four in stock! He drove to the other side of town to pick it up and they couldn't find them anywhere! 30 minutes later they did find them still on the truck. He loaded it up and took it home so we could have it put together for the morning. He worked on it for hours until well past midnight outside in the snow. He got it done, and it was well worth it to see the look on his face!
|
All finished! Why there is snow at the end of April I'll never understand. |
|
Super excited |
He came inside for breakfast and to open presents from Aunt Cole. She always gets just what he loves. This year it was Scooby Doo and Battle Force 5 stuff! He was so happy and excited.
And what does any birthday boy want for breakfast? Well probably not what Ethan had; 20 grams egg, 21 grams butter, 40 grams strawberries, 12 grams bacon, and 67 grams of heavy cream. Just in case you're curious, that is about a third of an egg, melted into just as much butter, about 2.5 ounces of cream, 1.5 strawberries and a piece and a half of bacon. His stomach has finally adjusted to the smaller portions and he actually has a hard time finishing his food now.
|
Eating on the couch watching his new movie from Aunt Cole! |
I have to add, earlier in the week I let him cheat and open presents from Great Grandma and Grandpa. They got him an awesome soccer ball thing that is like playing air hockey in your kitchen, and a cute interactive Thomas book that he loves! Taylor loves it too:)
|
|
The day was so unlike a regular birthday. I wished I could take him to a playground, or out to eat or something. It just isn't possible for him, not yet anyway. He is still having daily seizures, but we have gotten a few seizure free days out of him since starting the diet. He has only drop seizures now though. A quick 2 second jerk or fall is so much easier to handle than a 15 minute all out tonic-clonic seizure where it looks like your child is dying. This diet, as much as a pain as it is, is an absolute miracle! ABC did a segment on the diet the other day, along with an article. I was on the verge of tears watching the other kids seize, but realizing they are just like him. It was just crazy to see our life through other people. Check out the article if you have a minute:
http://abcnews.go.com/Health/Wellness/ketogenic-diet-high-fat-diet-treat-seizures/story?id=13366995
|
Making a birthday wish!.... And spreading weeds all through the yard! |
Ethan didn't have a party, he can't have a party. It would be way too exciting for him, and could cause seizures that could land him in the hospital. It's sad, but a fact of life now days. We have to keep things low key. We are taking him to a park this weekend to just run through the fields, and his grandparents are coming. That's pushing it excitement wise. I checked the forecast and it's a high of 48 on Sunday when we want to go. Cold weather go away! All I want is once nice fun day for my boy's birthday.
We also went through another first this week, his very first keto holiday. For kids, Easter mostly revolves around candy and lots of yummy food for dinner. Obviously both of these are no-no's for Ethan, so my parents got creative with lots of Easter fun involving no yummy treats, and Mike and I planned a keto meal to mimic what we would be eating. We ate ham, asparagus, and mashed potatos. Ethan had Canadian bacon, asparagus and butter.... Kind of close! Ethan's eggs were filled with toys and money, and he didn't realize the difference and had a blast!
|
Hmmmm, where are they? |
|
Going through the loot |
I took a picture of Ethan and Taylor last year on the couch, and had to do the same this year. It's amazing how much they grow in a short year. My babies are growing way too fast:(
|
They have both gotten so big! |
And just because, a pic with mommy:)
Hi there, I linked over to your blog from your etsy profile :)
ReplyDeleteFirst off, your kids are absolutely adorable! Second, holy moly, what a hand your little guy (and all of you) has been dealt- He is indeed a strong, brave boy!
I just spent some time reading through your journey so far (congrats on the new house too!), and maybe I missed it, but could you explain the flu shot link with Doose? Is it a link with epilepsy in general?
Thanks for sharing your story in such detail, as I'm sure it brings comfort (for lack of a better term) to other parents going through similar experiences.
~ Amy