Progress

Every time Annie makes a change for the better, I'm almost afraid to report it because I think that it'll change again, and then I have to take back what I said. But she is better. She spent more time playing with her toys today, and she "only" had about 7 seizures so far today, which is less than the four an hour she was having last week. She also seems more alert and aware of what's going on in the room than last week. So, progress!

There's a few things that may be working to produce this change: the selenium, the carnitine, the vitamins--maybe the snowstorm we had yesterday...maybe your prayers??? Anyway, just thought I'd share what's going on here. Today is also my firstborn, Taylor's, 26th birthday. Eeek--that number is getting way too high.

Jean


(Happy Birthday, Taylor, wherever that Peterbilt 357 takes you this week!)

Happy Easter!

What a God we have! And how fortunate we are to have him, this Father of our Master Jesus! Because Jesus was raised from the dead, we've been given a brand-new life and have everything to live for, including a future in heaven—and the future starts now! God is keeping careful watch over us and the future. The Day is coming when you'll have it all—life healed and whole.

I know how great this makes you feel, even though you have to put up with every kind of aggravation in the meantime. Pure gold put in the fire comes out of it proved pure; genuine faith put through this suffering comes out proved genuine. When Jesus wraps this all up, it's your faith, not your gold, that God will have on display as evidence of his victory.

You never saw him, yet you love him. You still don't see him, yet you trust him—with laughter and singing. Because you kept on believing, you'll get what you're looking forward to: total salvation. 1 Peter 1:3-9 (The Message)


Prayers for YOU all to have a blessed Easter because He lives!

Jean

Spring eve

There's not much new to report on the keto-diary front. Same song, second verse: Annie's tired, seizing, and rousing occasionally. She's sleeping through the night, which is good, but getting up too early, which is not so good, and then settling in on the first of 5 or 6 laps we rotate through each day-mine, Bill's, Andy's, Olivia's, David's, Jack's, and Peter & Taylor's when they're in town.

We've been in touch with the doctor, dietician and nurse today. The thought still is that the lethargy is probably due to getting used to the diet. As usual, we appreciate your prayers for Annie to perk up, the seizures to end, and for her to do backflips down the hallway tomorrow morning.

Jean

For by You I can run against a troop;
By my God I can leap over a wall.

As for God, His way is perfect;
The word of the LORD is proven;
He is a shield to all who trust in Him.

“For who is God, except the LORD?
And who is a rock, except our God?

God is my strength and power,
And He makes my way perfect.

He makes my feet like the feet of deer,
And sets me on my high places. 2 Samuel 22:30-34

Ketogenic Diaries

The blood test results came back today, and the doctor and dietician recommend going up again on the diet. So we'll do a 2.5 fat to 1 carb ratio, and see how she does on that. Hopefully, it'll help a little to lessen the seizure activity. I'm still wondering what effect her Addison medicine, hydrocortisone, has on the effectiveness of the diet. Pray that it doesn't have any effect, and that the diet can work.

Meanwhile, she is still very sleepy and again, having lots of seizures throughout the day. I wonder if the sleepiness is simply the "postictal" state that many people experience after having seizures.

Jean

I wait for the Lord, my soul does wait,
And in His word do I hope.
My soul waits for the Lord more than the watchmen for the morning;
Indeed, more than the watchmen for the morning. Psalm 130:5,6

Three's a charm

After the 3rd phlebotomist came into the room at Children's, they finally got Annie's blood drawn, and hopefully the results will be back soon. Poor Annie's veins just aren't very robust. We almost had two patients to deal with too--we were just about done with the whole procedure, when I heard a voice behind me saying, "Mom, I think I need to sit down." So I look over my shoulder to see Olivia with the color draining out of her face. Hurry, sit on the recliner and get her some juice, we'll be out of here in a minute.

I need to learn how to do this stuff at home.

Jean

Still working on it

The lab tests need to be repeated--they didn't get enough blood because Annie is a tough one to draw--so we're going to get that done again tomorrow, then hopefully hear by the end of the week if we can go up on the diet, and down on the meds. Annie is still tired, and having frequent little seizures throughout the day.

Thanks for your prayers for us--stay tuned.

Jean


The LORD will give strength to His people;
The LORD will bless His people with peace. Psalm 29:11

Better tonight...

After a day of lethargy and many little seizures, Annie is doing a bit better this evening--thank you so much for praying for us. We're going to get more lab work done tomorrow, and then based on those results, the doc & dietician will make recommendations about whether to increase the fat/carb ratio of the diet, and/or wean off any medication. It's been discouraging to see her so tired and out of it, but she occasionally rallies enough to smile or reach for a toy, so we're not totally demoralized. But I understand that the Ketogenic diet takes a while for children to get used to, so I need to be patient.

I've kept her therapy schedule going this week, and today at PT, she was fitted for a Leckey gait trainer. It looks like it'll be a good design for Annie, and hopefully will allow her to get standing and walking practice. And what a great thing for me to promise to videotape or take pictures of.

A little Boston Terrier news: we have succeeded in training Millie to use the bathroom. Ours, that is. When she had her leg cast on, we couldn't take her outside to potty, so we used the newspaper in the bathroom trick. It worked so well, she'll have nothing to do with the outhouse. Frustrating. But a few days ago I noticed that she stands guard beside Annie when anyone comes to the front door. What am I going to say to that?

Jean

"My little dog -- a heartbeat at my feet." ~ Edith Wharton

Hanging in there...

--as of 6:45 PM, I haven't talked to anyone at the hospital yet about the seizure/med situation, but she is a bit better this evening than she was this morning/afternoon. Still lots of little seizures...and I really don't know what's causing the new seizure activity. Droopy, weak, but reaching for toys now and then, and smiling now and then. Thanks for keeping us in your prayers.

Just laying low...

Jean

Seizures today

Annie's not doing well today. She's sleepy, (to be expected on the diet), and having lots of little seizures. We talked to the doctor at Children's this afternoon, and went up on one seizure med. Please pray that the seizures GO AWAY, that she perk up, and that we do the right things at the right times.

If nothing emergent happens tonight, we'll wait and talk to the dietician and doctors tomorrow and try to figure this out.

Thanks,

Jean

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7

Home

Before we were discharged yesterday, I took Annie down to the hospital playroom, and in past the tables set up for painting, coloring, and playing with bubbles. I pushed her wheelchair over by the door that leads outside, and stopped in front of the long mirror so she could see the little girl in pink. We were good until I stopped instead of opening the door to go outside. Loud yelling and big tears. Great--all the playroom supervisors grabbed their walkie-talkies to report the mom making her kid cry.

So we went outside. Children's garden area is pretty cool. Of course, any garden on February 29th in Seattle is cool, especially when the sun is shining. What was I thinking with the mirror? We started up the paved path, and stopped beside the blooming hellebores. Now I know why my friend, Debbie, likes hellebores--soft purple-to-green blooms. Around the circular path to where the creeping thyme was overtaking one corner, I reached down and twisted off a tiny bunch so Annie could smell the lemony scent. "Here, Annie, this smells good." She sniffed her nose. "Hmm," I thought. "she sniffed on command!" This kiddo is tracking with lots more than I think.

We were discharged around 2 PM, and came home to a clean house, (thanks, Donna!), and pizza for dinner, (thanks, Sue!). We are so glad to be home.

Now, here's our current dilemma. Her Addison's medicine keeps her blood sugar up to a nice range of about 95-110. However, the goal of the diet is to slowly decrease her blood sugar to around 50-60, which, of course, gives me hives just thinking about it. But that's when the diet works. So--please pray that her blood sugar go slowly down, and her ketones--don't ask me what they are, I would say I flunked chemistry if I ever took it--go up.

Thanks again for checking in and for every prayer you say for Annie. God really is answering each one. I'll repeat myself--I wish I could read your prayers and tell you, "Yes! God answered that, too!" Your prayers are hard work, and my prayer today is that God would show you that He hears.

Jean

"Short prayers are long enough." Charles Spurgeon