We’re in for a busy week this week. As it stands we have four appointments, one being an echo-cardiogram tomorrow for Emmett’s heart. His heart is pretty much the only thing that hasn’t been looked at, so we requested to have a look at his ticker to make sure all is well. When Emmett was a few months old, one of the neurologists had mentioned watching Emmett for Tuberous Sclerosis. Thankfully, he isn’t showing any signs of this apart from the early onset epilepsy. The heart can be affected by TS, so having a look at it will make us feel better about ruling it out. The technician said we’ll try to do do the echo without putting him under. If she can’t get good images we’ll have to go back at a later date and have him under anesthesia. I’m hoping we won’t have to go that route. We’ll try to keep his attention with some light toys. Apparently the test takes 30-45 minutes, so it might be a good idea to bring LOTS of light toys.
Emmett had a PT appointment last week and she put him in an inflatable pod type of thingie. It looked like he was in a little boat. SO adorable. And of course, I’ve had “Rock The Boat” in my head ever since.
Cool dude Emmett! All ready to kick some butt at his PT appointment. He’s gotta make sure he looks cool for the ladies, you know.
And forgive me, these next photos aren’t the best of quality at all. We were also chatting with the dietician so I didn’t want to bring my camera and keep telling her to ‘hold that thought’ while I snapped away. We just used Ryan’s iPhone.
There we go! Rock the boat, don’t rock the boat bay-beh!
His hair never fails to crack me up. I love how he’s just got his elbow up, just hangin’ out.
This is the face of a kid who just Rocked The Boat!
We haven’t heard back from the IWK (shocking) in regards to when Emmett will be admitted for the ketogenic diet. I hope it’s soon because his seizures are starting to get worse again. I really don’t want to have to put him on a new medication right before he starts this diet. Especially if the diet helps. He’s on four medications right now and we really don’t need to up that number to five.
SO PLEASE CONTACT US, IWK. PLEASE GIVE US THE ‘GO AHEAD’, NEUROLOGIST FROM HALIFAX.
Our neurologist in Saint John gave us the ‘OK’ but since he’s being admitted in Halifax, she needs to give us the go ahead. And she’s the one that has been gone since the spring of this year, so I imagine she has a lot of parents breathing down her neck right now. Still doesn’t make it any less frustrating for us. I spoke with her secretary again last week and will probably make a call to the dietician at the IWK this week. Gotta keep on them.
We did get some good info from the dietician in Fredericton. She gave us a sheet that was titled, “Fat Tips” !
Here are some examples of fat tips:
- Melt butter, then add a pinch of cinnamon and a few drops of liquid saccharine. Serve in a small cup as a drink.
- Melt some butter, then pour it into a fun shaped ice-cube mold. Weight allotted portion after removing the butter from the mold. Your child can eat this plain or you can place it on top of cooked food.
- Blend melted butter with chopped peaches and vanilla extract. Freeze the mixture. Tastes like peach ice cream! (I don’t think so…)
- Mix melted butter into applesauce.
- Mix butter into peanut butter or cream cheese
- Blend oil into mayonnaise. Mix into finely chopped chicken, turkey or tuna.
I could barely read the butter fat tips with a straight face. I was pretty horrified. Some recipes do look really good, these are quick solutions for when we need to get some fat into him. At the start he’ll be on a 4:1 fat ratio. And will need to take supplements because he will be missing out on vitamins and nutrients, obviously. He’ll only be able to drink water while on the diet and that will also need to be measured. I’m pretty sad I won’t be able to let him have a sippy cup anymore. And since every drop of food needs to be consumed, we can’t let him try and feed himself. Hopefully if the diet works, then he’ll have a higher concentration and will be able to eventually feed himself. And with his seizures controlled, his vision should improve more, too.
This is all Ryan and I can think about lately. Hoping and wondering if this diet will work. If it doesn’t, we’re going to be really discouraged. All we’ve ever wanted since Emmett was born has been to get these seizures under control so he can have a better chance. The seizures hold him back so much. I would love to know what it feels like to not be worrying about seizures every minute of every day. Even if his seizures were cut down by 50%, that would be fantastic. Here’s hoping.
I’ll leave you with this. Happy Monday!