In the last few months, I’ve changed his diet to include more fruits and vegetables in a smoothie through his PEG Tube (gtube) in preparation for the doc recommendation of the Keto diet, and the changes I’ve seen in him through just doing that much have been amazing. He’s had more balance, has been more regular than he’s been in a long time, he seems to have more clarity – reacting faster to things the less carbs he had during the day.
The last 7 days have been a whirlwind.
We were inpatient starting Tuesday of last week – April 18, 2017 – to start the Ketogenic Diet to help with Ryan’s seizures. It’s not that his seizures were coming on more frequent (that we know of) we just got to a point where the EEG still showed activity and we really didn’t know when Ryan was having the seizure activity because we didn’t see it clinically (physically in his body) when he was awake. There were times that we saw seizure activity when he would fall asleep on the couch for a nap or before bedtime and we made our way to the bed room….wake him up and the clinical seizure activity stops.
So here we are. Today being the best day ever – so far of the last 6.
Tuesday morning he was able to eat whatever he wanted before being admitted. We were admitted about 930am and that’s when the teachings started. Ryan would only be able to have 10grams of carbs per day. To my surprise, even the fruits and veggie smoothies I was giving him by tube had LOTS of carbs in them. Hah. Well crap.
First things first – we needed to wean him off of the smoothies (you bet I brought some to the hospital with us! It was our norm for the last few months instead of formula!). Lunch consisted of LOTS of meat and cheese, 6 oz of smoothie and 2 oz of the new KetoCal formula. Dinner was 4oz smoothie and 4 oz of KetoCal, more meat and cheese…which Ryan started not liking. He missed his pretzels, french fries, chicken nuggets….all things we used to get at Children’s the MANY times we were there. He’s just not a meat and cheese guy! But thankfully, we’ve got the tube to make up for that! We just needed to get home where our blender was, I thought.
Wednesday morning he didn’t eat much! We were down to JUST the formula by lunch…which didn’t sit well in his tummy and he vomited a few times throughout the afternoon. Ryan was in Ketosis by Wednesday afternoon/evening….and still is. We ended up doing a formula feed about bedtime and held off on any real food – hoping it would keep him feeling well enough with just the formula. As long as he was vomit free for 24 hours, we’d be able to go home after dinner on Thursday….which happened.
We got home about 730pm on Thursday evening and had a pretty low-key evening. He slept through the night and woke up on Friday morning pretty lethargic and kind of out of it…the keto fog they talked about, maybe? Mid morning – he was throwing up again. Boo! And continued throughout the afternoon – double boo!! And then woke up in the middle of the night…..triple boo!
Saturday was a great day. I didn’t force any foods or any smoothies – focusing mostly on keeping him hydrated with the formula and water. Sunday was another uneventful day…no smoothie until about 2 hours before bedtime.
Today started out like any other Monday – Kinda. Ryan slept through a feeding of smoothie and formula and woke up with a HUGE smile on his face – at the time we were supposed to be OT – so we called for an appointment later and were blessed with one just an hour later. He so enjoys going to therapy and playing one on one with the ladies that love him, and get him and allows him to melt in their laps after they’re done “working”. We came home and he was full of energy and ready to actually try and eat something! We did another round of smoothie and formula – and within 30 minutes he threw it up and took a nap.
We’ll try another schedule tomorrow of just 2 smoothies and instead of back to back meals, we’ll try breakfast and dinner to see if we have more luck with that. I’m hopeful that his energy will return even more tomorrow and with every day after that – that he’ll start doing more than we have seen thus far, and he’ll have more mental clarity to enjoy doing things we all love doing with him….among the obvious of taking the seizures away!
It’s days like today when I want to throw in the towel. I want to wave my white flag. Throw my hands up and say “I GIVE UP!!!!” Then run out of the house, hop in the car, and drive into the sunset…far far away from here. Because from the time I woke up this morning, into the time I was just putting Ryan to bed, it was a hard day.
We’re going on day 11 of illness for Ry. The day before Thanksgiving, he came down with something. So with that, we’ve only been out of the house maybe 3 times – and one of those was for an emergency visit to Children’s at 1030pm last Thursday due to a seizure. (I’ve gone out more – only after he’s in bed and someones keeping a close listen for him.) So to say he’s going a little stir crazy may be a tiny little understatement. Agreed?
I woke up to snow. The first snow fall of the season on December 4, 2016. Whew! It’s been a nice long fall and I’ve loved the warmer weather into mid November. I understand seasons change – but I. don’t. like. winter. Granted, it’s absolutely beautiful but with winter comes a whole change of new transition health wise for Ry and I don’t like it. Nor do I like the wet, slick, and cold weather. So first thing – snow. OHHH PRETTY!! But ick. Hah!
Since Ry is still fighting his first (and LAST) winter cold of the season, I made the executive decision I was staying home with him (again) so the rest of the family could go to church. All was going great!! He wanted to sit at the kitchen table while I was cleaning and preparing lunch for everyone. I’d interact with him every so often. And then while I was at the stove stirring lunch, I glance at Ry JUST as he face plants chin first. Instant blood everywhere as he bit both the top and bottom part of his tongue. I guess there is a plus for him having an overbite? Boo.
The eating thing has been pretty iffy since then. Not good. Swollen tongue. Open wounds (however the wounds within the mouth heal the fastest than on any other part of the body!). Crankiness from still needing his nose wiped. Tired – not tired. Wants to play. Doesn’t want to play. Good times, really!!! Oye. Mama’s tired.
Even getting to bed tonight. A chore!
Kicking. Hitting me square on the cheek. Then on the forehead. All while I’m stroking his arm and gently taking it away from me as he attempts another swing, I remind him to “use gentle hands” and “be nice to mommy”. And just as I start singing, his whining gets louder. But after making him giggle a bit, I realize that no matter what the day throws at me, no matter what my attitude on the day and everything that’s happened in it, I want to always remember that giggle. The chuckle that we finally have started hearing this past summer. (Who knew when you feel GREAT and start getting the nutrients your body needs, you start feeling better and you can finally LAUGH!! I’m so thankful to be taking these moments in NOW!)
When I want to throw in the towel so many times throughout everyday, I’m now laying next to my boy with his eyes closed realizing something SO huge that I’ve realized many times before – HE IS A BLESSING!!
He is so much of what I need in my life, even with the really, really, really, bad times.
He is everything God knew I needed, and so much more.
Because it’s been asked for already, I’m putting the gift ideas list for my family here:
- Betty Brinn Children’s Museum membership
- Milwaukee County Zoo Pass
- Discovery World membership
- Shedd Aquarium membership
- The East Troy Train Museum – Pizza Train
Because let’s face it – the stuff is just that….more stuff. And we don’t need more stuff. We need more quality time with the family out of the house enjoying ourselves.
Also – we’re not celebrating a traditional Christmas this year. No toys or tree. No lights or mistletoe. We’re saving ourselves from more “stuff” and taking a family vacation to Florida in January!
I’ll update on more soon – I promise!