Saturday, January 22, 2011
We're still getting the kinks worked out of our new regime with the diet. We have seen a reduction in Lola's seizures, for sure, but it's not 100%. Will it ever be our cure? Who knows? We are hopeful, for sure. So everyone asks, "But what can she eat?" Don't worry, she's eating just fine - her portions are smaller than she's used to, but she's eating a variety of fruits (raspberries, blueberries, mango, blackberries, etc.) and veggies (swiss chard, romaine lettuce, carrots, asparagus, broccoli), lean meats, and even a bit of pasta (shiratake noodles/yam noodles). For the mostpart, she's doing fine with it. She endures the needle pokes when I test her blood ketones, she's slowly getting used to being without juice, chocolate milk, cheerios, and yummy stuff. She's still crying at the end of her meals, to let me know "that wasn't enough, mom." It breaks my heart, but I know that it's doing her good. She isn't losing weight, or wasting away, don't worry. Check out the pics - she's doing just fine.
We've had some sort of superbug invade our home. Everyone's been sick. And not just the run of the mill cold/flu. It lingers, and morphs, and reinfects. I don't get it. At any rate (touch wood), Lola and I are feeling better - the boys have wicked coughs, and I'm sure that it's triggered by their asthma. sigh. Liam had to leave soccer after only a few minutes today because the exercise made his cough worse.
The weather has been insanely cold this January, but we got a bit of a reprieve this week. So Lola and I went out for a little walk to get the stink blown off of us.
Wednesday, January 12, 2011
......don't want to jinx anything, but Lola has had NO seizures today. I can't believe I'm writing that. Every morning for nearly a year, we've watched Lola have a massive tonic seizure in her chair while waiting for breakfast. Sometimes she hits her face on the table, the floor (if she's walking at the time), or on some other hard surface. It's devastating - you never get over the horrible feeling in your stomach while you watch helplessly - trying to sooth her with your touch, and with your words. Today, we waited...and we watched....and we waited....no tonic seizure at breakfast. Well, it would surely come during playtime with Deannie. Nothing but a few quick "episodes" (which are also a type of seizure, but they don't render her exhausted for the morning) that she quickly recovered from. I am in complete shock. I don't want to get too excited, but seriously? I want to scream it at the top of my lungs!
Sunday, January 9, 2011
This is Lola's friend, Abby May. She passed away Thursday evening after a lengthy battle with mitochondrial disease. Many prayers for her mom, dad and brother as they mourn her loss. Such a sweet girl.
Well, this will hopefully be the year that we get a handle on Lola's seizures. We've got our fingers and toes crossed.
We are just home from our inpatient (or "impatient") stay at the Alberta Children's Hospital to initiate the Ketogenic Diet. It was rough. First, it's RSV season, and PACKED on the unit - not a bed to spare - so we were at first sharing a room. sigh. So Lola spent a couple of days just trying to run to the other side of the room, dive under the curtain, etc. Second, she was battling a cold. Third, her seizures were brutal. Fourth, she had to have IVIG as well as an EEG all while I was trying to do the Keto training with the dietician.
Anyway, we started out the stay with four meals of "formula" - poor Lola. She was not happy at all. I guess in a way having a cold was a blessing because she wasn't very hungry anyway. After those meals, they began to introduce the Keto meals - problem is, being in the hospital, they weren't exactly gourmet standard. We're talking a teaspoon of applesauce, butter, mayonaise and a piece of cheese. Poor Lola! Anyway, she did okay. We finished off the stay with a 9 hour EEG - she had a ton of seizures while we were connected, which in neuro land is a good thing. The last EEG we had showed no seizures so how are they supposed to know what's going on? Our neuro came in to discuss the EEG with us and he gave us some surprising news - the seizures were coming from the RIGHT temporal lobe - Huh? But her main injury is on the LEFT?? Anyway, this is a good thing in neuro-land because it means that we would have the opportunity for surgical re-section of the right temporal lobe at some point down the road if the diet doesn't work. So we're scared, but hopeful that at least there's another option - and that at least they can pinpoint one area (rather than several) that is causing these debilitating seizures. And that's about all we know. We were happy to see our old pals on the unit - so many amazing people who care so much about their little patients. We were lucky to have Grama and Grama visit to help with Liam - they are heading home today and we'll miss them tons. Liam and Lola have had lots of playing, checkers, crosswords, stories, etc. We were also very happy to have Grampa Ed visit before Christmas - there were so many games played, lights seen, hot chocolate drunk, and much spoiling done. We are blessed to have awesome Grama/Grampas/Papa in our lives.
Lola's starting to wake up so I'd better not be late with breakfast! False alarm.
On a very sad note, late last week, Lola's little pal Abby lost her fight with Mitochondrial Disease. She was a very sweet, feisty, beautiful, determined little angel. Lola has known Abby since her first stay at ACH - and they also went to "school" together at GRIT. We are devastated for the Halford family, but know that Abby is in a better place. Hug your kids tight.