Thursday, July 22, 2010

Leaving on a Jet Plane!

That's right - Lolly and I are heading to Vancouver Island to meet up with Liam and Steve, and also with Pubba, Uncle Lipper, Zac and Jarebear. Can't wait to see these guys! I can't wait to park myself in a lawnchair and watch Lola play. I can't wait to see the kids explore the beach/ocean again - Liam has his net all ready for catching crabs and starfish! (Don't worry - he lets them go when he's done checking them out.)
So we're praying for a smooth trip for everyone - the Ontario gang has to take a car,plane,ferry, then another car ride. I'd better have some ice cold pops ready for them upon arrival!

Oh yeah - Lola had her ivig again today. It was brutal. The nurses had their hands full in there, with many difficult iv starts (lots of screaming, lots of waiting). Lola decided that she wanted to leave - problem was that she had about two hours left to go. Nothing was distracting her and I thought I'd lose my mind. Anyway, we decided to run it quicker for the last little bit just to save everyone some misery - poor Lol. While we were waiting at the very end, we got to leave the unit and we ran into Doods and Lani. They are so sweet to Lola - and she was really happy to see them (even though her mood was irate for most of the day) and gave them big high-fives. Just them - nobody else. That's my girl.

Hopefully my next post will have lots of sun, sand, and salmon!

Sunday, July 18, 2010

Okay, seriously...

So Lola's down (but not out) with a tummy bug. I took her into emerg. last night because I was reading terrible things about her med interactions and liver damage. Since she went downhill so rapidly, I thought it best to take her in. We were seen pretty quickly, then she spiked a 40 degree fever, then they tried (in vane) to get an IV started, then they gave her 4 pokes to take blood. End of story: her liver enzymes are fine, and her valproic acid levels were within therapeutic range. They really wanted a urine sample, but Lolly wouldn't give it up - then she had a blow-out code brown - it was insane. I pushed the call button twice, and nobody came - so I somehow got her cleaned up, urine bag removed (you can imagine what that was full of by this point), etc. Fun. The Dr. came in and the smell hit him like a ton of bricks. Wow. It was intense. Anyway, long story longer, tummy bug. So she's sipping Pedialyte and ate half a banana and a few goldfish crackers today. She's sleeping lots, and snuggling more. My poor sweetie.

Anyway, we're hanging out up in bed - for the past two days. I'm going stir crazy. I snuck downstairs to make a sandwich - felt so decadent. Hopefully she's doing better tomorrow.

The boys are having an amazing time, as evidenced by the Facebook photos Steve's been posting. I'm living vicariously through them.....zip lines, sprinkler parks, hot tubs, bike parks. Man, I miss them!

Friday, July 16, 2010

Ketogenic Diet

After an hour-long phone call last night with a dietician at ACH who specializes in the Ketogenic Diet, we have decided that we will be starting the diet as soon as we can. This diet helps to control or decrease seizures that are resistant to meds. When meds aren't doing the trick, this diet is often a next step. It dates back to biblical times - it is a type of starvation diet. Don't worry, Old Lolly the food lover won't be starved, but she will be carb/sugar limited. If you would like to read about the diet, this is a good place to start:
www.charliefoundation.org
So Lola and I will have to stay at the hospital for roughly five days in order to begin the diet. She needs to be inpatient so that her ketone/blood sugar/etc. can be closely monitored. It is a very precise diet - everything she eats needs to be weighed and calculated.
Since we added Trileptal to the Divalproex Sodium, Lola is doing so much better. We emailed her neurologist, who agreed it was these drugs in combination that seem to be working for Lola - and she increased the Trileptal by one pill. So today is day one of two Trileptal pills (250 mg) am, (125 mg pm), added to the 250 BID of Epival. Pray that we aren't pushing it and that the drop seizures continue to abate.

Steve and Liam left for Whistler this morning. Boy, is it quiet around here! So today I've got some loose ends to tie up because Leni will also be off for the next two weeks. Lola and I will be batching it! We sent all our clothes/toys/stuff with the boys so that all we're taking on the flight is a carseat/stroller/carry-on bag. Thankfully it's a quick flight!

Thursday, July 15, 2010

Big Girl - small car


Lola's favorite ride-on toy. When we were inpatient the first time, Lola used to ride this car up and down the hallways of ACH. Now she's a little bigger (?) but she still likes to go for rides from time to time.

Holiday ready...
















Liam and Steve are raring to go - they're heading to Whistler tomorrow, where they'll stay for a week. Liam is going to go to bike camp for a few days, so he is pretty excited. Steve will be riding (of course) - let's hope they get some decent weather.

Grampa Ed visited for a week, and the kids loved to have him here. He had to sleep in Lola's princess room, which was kind of funny. Riley got a million walks, Liam got to play about 87 games each of Ducks in a Row, Spot the Difference, Battleship, Candyland - you name it, and Lola had some quiet time with Grampa reading books. It was really nice to have him here and meant the world to Liam.

Stephen the Neurologist - so we had a neuro appt a couple of weeks ago, where we expressed our concerns about Lola's seizures. What to do...what to do. We discussed meds, ketogenic diet, and surgery. We all agreed that surgery is way way way down the road, and that the meds weren't working regardless of the dosage or combination. Lola was a pickle in the appointment, so we took turns taking her down the hall, out to the van, etc. On one of these trips, Steve told the neuro he wasn't happy with the "wait and see" attitude and wanted something done today. He suggested Trileptal, and the neuro thought it was worth a try. Well, she has not had one tonic seizure since we started the med. Seriously! She's still having drop/atonic seizures, but things are certainly on an upswing right now. I almost hate to post - don't want to jinx it. When we were in Fernie last weekend, she was not in a good state at all - constant seizures, very unhappy, post-ictal most of the trip. We were so worried. So anyway, we're praying that this new pattern holds not only for our trip to Vancouver Island, but just in general as she's doing so much better.

Okay, I should get packing. I have to have Lola and I totally packed because the boys are taking all our luggage with them - Lola and I fly (yay, airmiles) to Vancouver next Friday and we want to travel light!

Sunday, July 11, 2010

Birthday Girl
















Happy 4th Birthday to my beautiful Lorelai Audrey Grace – aka Lola, Lolly, Lolly-Grace, Lollypop, etc. etc.
It would be too easy to look back to July 11, 2009, which we spent at Aunt Pub and Uncle Lipper’s – to remember that you didn’t know how to eat your princess cupcakes. We pretended that you were eating them, for the sake of a few photos, but in reality, you weren’t quite there yet. You received tons of presents and lots of love from your extended family – lots of visits from Grama and Grampa, Papa, the Douma gang, the McEwans, the Howsons – the whole gang.
It was last summer when Mary got you to stand (fully supported by her skilled hands and knees) and we all cheered and cried. We were completely amazed that she could get you to bear weight on your legs and support yourself upright – even if she was doing a lot of the work. It gave us a glimpse into your future – one where you walked, and danced, and ran unassisted. Mary gave us the gift of hope that day, which should never be underestimated.
It was last summer when Aunt Mich and Aunt Dina brought over some cute little summer shorts outfits, matching hair bows, and some really cute shoes. When I put the shorts on Lola this week, I was reminded of how excited Mich was to give Lola her present – and how much she loved “little girl” shopping.
To say you’ve come a long way this year would be such an understatement. You’re an amazing little girl. My protective love for you intensifies whenever I watch you go through a difficult medical procedure, or endure something a small girl should never have to experience. I’m reminded of the fragility of life, and how you’ve defied all the odds. I’m just so thankful that you’re here, and that you’re incredibly resilient, and such a joy. I feel lucky – and I know that sounds strange given the hand we’ve been dealt – but I do. I know that you serve a greater purpose – and it’s to help others along the way…to give strength, love, and faith…a second chance. We all need something to believe in, and baby, I believe in you.