Tuesday, February 14, 2017

Keto Day 2 with 2:1 ratio

Today Asher gets a 2:1 ratio which means there are two parts fat to 1 part Protein and Carb. It has it listed as 82% fat. She had her "breakfast" shake while kicking ball with me. Using the syringe last night with the last feed was such a breakthrough - it makes feeding quicker as I can give her more than what she would just sip from the cup. So it only took 45 minutes for breakfast today. I was pleased with the improvement.
We were in and out of the playroom through the morning, so I will let you enjoy those photos while I update on what happened today.
Her neurologist got a call at 4pm yesterday letting him know that Asher had pulled the NGT out (twice). He got very concerned about how we are going to cope once home (without the backup of the tube feeding) and so the dietitian and he had come up with a plan to just keep Asher on the 2:1 of today, have loads of food recipes for that ratio, and slowly increase the ratio it over the weeks (and months) ahead. I was confident however that we would be fine with the improvement I had already seen with using the syringe - and also explained to the dietitian that I would prefer to get her onto at least a 3:1 before we go home, so that if there is a bad reaction with her blood sugar levels, we are here where help is.
I chatted to the neurologist too and gave him a better picture of how easy it is to feed Asher. Most of her meals end with Brendon or I feeding her while she plays on the iPad. She often gets full and then wants to leave the table - so we keep her at the table this way and we all stay together. I asked if we could see how today goes, and then I prayed (and asked Brendon to pray).
Her morning feed was already so much better and only took 30 minutes.
Then Toby (her nurse) and I decided to get the ECG done (they want it as a good base record). Toby has gotten to know Asher well since Sunday and it went so well.
We worked well as a team keeping her hands away while he got all the cables attached (her tight top helping) and then I got the iPad for her. She hasn't used yet during our stay, so I was hoping it would catch her attention. I quickly found something that got her to sit and watch (rather than dance along or select things) and Toby got an excellent reading as she was so still. It did take a couple of tries, but I adjusted the apps and found the perfect one (not pictured).
Just before lunch the dietitian popped in. I was very pleased to hear that they are happy to wait and see how things go today and then if it's going fine, increase to 3:1 tomorrow. What an answer to prayer.
Lunch was again just 30 minutes with the syringe. Once I had eaten lunch, we headed off to the Botanical gardens. We spotted a lady feeding the ducks with her baby, so Asher got to get nice and close. The lady gave me some bread too - so that was fun.
The playground isn't close to the entrance we came through, but it was a lovely walk and Asher was happy looking at the flowers and trees.
The first slide was rather hot (and I was getting hot in the sun) so I was pleased she didn't stay there long. There is a big water area (with very shallow pools) and Asher kept asking to go to the water. I have no gear with for that though, and thankfully she found other things to keep her busy (like the orange slide which was in the shade).
Some swinging and more sliding and then we headed back.
For her afternoon tea I offered her the cup (as I normally do at the start) and this time she took it. She drank half the meal before I had to use the syringe. So it was again nice and quick and just 30 minutes.
So the photo has a dual purpose - to celebrate the milk mustache (from drinking it herself) as well as showing the turtle that she build - outside it's frame. I encouraged her to do the same with the lion, but she searched for it's frame and then started. So not quite ready for them all, but it was nice to see.
The activity room closes at 4, so we headed down there for almost an hour. I found a tennis ball with the velcro circle to catch it on, and Asher spent ages throwing it to me (and racing the cards after each throw).
Asher was also very loud as she made a bit noise with every throw. It was one of her intense times where she is so intense with the game and the verbal intensity accompanies it.
Rachel (play room specialist) asked if Asher liked the Frozen music, and I said, no she just has 1 album she loves. Rachel was ken to try and find it and searched on Spotify and put 10,000 Reasons on her Asher. It was so cute to watch her fact when it came on.
I could see her trying to figure out how it was coming out of the speakers. She had just listened to it earlier as when I gave her the iPad this morning, the first thing she did was to put the album on. I was pleasantly surprised when Toby started singing along. I do wish I had taken a photo of Toby with Hezekiah on Sunday evening. Toby had a Star Wars top on - which Hezekiah obviously thought was great.
After mixing her drink for dinner, I just offered her the bottle I mix it in. She happily took it and just drank. She had a break half way, and then just kept going. It was done in just 10 minutes!!! Her neurologist and dietitian are going to be so pleased tomorrow. This really was a wonderful answer to prayer.
Please pray with us that she manages as well tomorrow with the higher ratio.
There were again people from Radio Lollipop around the wards this evening playing with the children. They had bubbles again, so Asher had some fun while I prepared her next meal.
I was hoping it would go as well as the previous, so started it a bit after 7 (original plan was feed from 7 till 7:30) but she was so quick that she didn't even take a break and finished it all in 5 minutes.
I have edited my records document to be a bit more practical, and so just took a screen shot of it updated this evening. Blood sugar a lot more stable than yesterday. Once ketones are really being produced, it can knock the BS a lot - so we have to keep an eye on it. Thankfully the ketones went up slightly this evening (rather than dropping as they had done yesterday). If anyone is wondering what the ketone measurement needs to be - the answer is "we don't know yet". Each person has their own therapeutic level, and this is why we will have regular contact with the dietitian through the next 3 months as we "tweek" the diet and get it exactly right for Asher.
Please pray with us for wisdom for all involved in decisions tomorrow, and also that her body would start producing good amounts of ketones.

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