Sunday, September 27, 2009


We're enjoying a nice, quiet Sunday. The girls are stable and Brodie is loving hockey. Hope's seizures have increased again, and she is less alert, but still so cute. The girls were able to wear their new outfits from Grandma today. What a treat to dress them up. Ashley smiled all through church, and Hope tried to smile in between seizures.

It's getting rather difficult to carry the girls up for communion, but I hate to leave them behind as if they aren't part of the family. You should have seen me today, as I tried to juggle Hope's floppy body and get two hands free to recieve communion. The double stroller doesn't fit through the lines of people, so perhaps it's time for two strollers and maybe we can wheel them up with us. Growing pains, that's what I'll call it. Different challenges as they grow bigger.

Tuesday, September 22, 2009


We enjoyed a visit from my mom and Hope cooperated by giving us some wonderful, big smiles today.
I was waiting to see if the smiles would turn into a seizure, but they didn't. As I smiled at her, she almost smiled bigger. It was wonderful and it reminds me of how she used to smile up until last October. Hopefully these smiles are here for real, and not just a one day occurance.

Saturday, September 19, 2009


Hope is definitely doing better. She kept all her meds down today, and all her fluids, and has had a few wet diapers.

Brodie had his appointment with the Eye doctor this week, and we recieved very encouraging news. The goal for Brodie's 'weak' eye, was to get it to 20/40 vision with a corrective lens. He has managed to get to 20/30 with a lens (which is even better). Even more exciting for us, is that his eyes are starting to work together, and he was able to see some of the shapes 'jumping' out of the book, while he wore the special 3D glasses. So, his depth perception may improve with time, very exciting for us, because we didn't think there was much hope for this.

Tommorrow he starts hockey! He's very excited.

Friday, September 18, 2009

Eyes open...

Hope slept most of the day and has not vomitted since this morning. She's kept her meds down, so far, no more fever and now she's awake. Now I'm just waiting for her to pee! Come on little girl, you can do it!

Meds in!

Yeah, we spent three hours giving Hope her morning meds (after we gave a gravol suppository), and she kept them down. She's sleeping right now, but has not had a wet diaper in over 24 hours, so we're trying to keep giving fluids very slowly. Too much will make her puke, and we really need those meds to stay down.


This morning Hope has a fever, and she's still not keeping anything down.

Thursday, September 17, 2009

Hope is sick again

Hope started vomitting yesterday morning and hasn't stopped. She hasn't kept any meds down or food or water since yesterday morning. This morning she's vomitting old blood, which seems to be the normal course for her. Her stomach keeps heaving even when there is nothing to expel, and I'm sure this causes the bleeding. She doesn't have a fever, and no one else is sick or has been sick, so I'm not sure what's going on with her.

Tuesday, September 15, 2009


Hope is definitely trying to smile today (check out my attempt to hold up her head and take a pic at the same time). I think she's been enjoying the extra attention she gets, now that Brodie is gone all day. Her smiles are very quick, and you'll miss them if you don't know what you're looking for, because only the right side of her mouth will 'quirck' up for just a second. But I know she's trying to smile and that's what counts. Good job, Hopey!

Monday, September 14, 2009

Just relaxin...

Brodie and Ashley enjoyed some playstation fun with Daddy on Saturday. This morning I took the girls to see the pediatrician, and make sure there are no infections lurking. Urine samples were sent for both girls, and we swabbed Hope's tongue to check for Thrush. Ashley is doing well. Hope is still pretty good, with moments of 'alertness', where she almost smiles and her eyes are open. Hope still cries for a little bit in the evening most of the time, which is why I thought I would get her checked out. Nothing was found, so I have nothing to fix, which means we cuddle her and hope the crying doesn't get worse.

Brodie is settling into his new school. He says it's 'okay', but hasn't been too excited about it yet. Hoping it gets better soon.

Tuesday, September 8, 2009

Farm pics

Our busy weekend is over and I'm finally getting things in order. Brodie is going to Grade One tommorrow and I'm not sure what we'll do with ourselves. So, I'm making arrangements to go back to work on Oct. 2nd. I'll work when Alex is home (weekends and his compressed day off, which occurs every second week), and this will eliminate the constant worry over finding childcare.

Just a few pics from the farm... Here is my sister's son, Ian, trying to play with Ashley's hand splints. He found them rather amusing and it looked like he was trying to hold her hand.
Brodie enjoyed a lot of combining and trucking. It was convenient that the semi, which Grandpa was driving, had a little bed for Brodie to play lego on. Here you can see Brodie with Alex in the combine (can you believe that it's green?!!, I grew up with the red machinery of course).

Each morning Alex would leave for the field and Brodie would protest. He thought he should be out there all the time. I enjoyed keeping him in the morning, it was so cute to see him play with his cousins. We also enjoyed a few meals out in the field...

Hope is different these days. When we started the antibiotics, we both noticed that she perked up and seemed much more alert and responsive. Unfortunately, with that alertness, we encounter the crying. She's had five sad, tearful evenings in a row (it is just a gentle sobbing, with a rather distressed look every now and then, which lasts about an hour). It's so sad to see her cry and not be able to do anything about it. I'm wondering if we'll have to go back up on the clonazepam. We'll see.

Saturday, September 5, 2009


Yep, Hope is definitely better. She perked up with the antibiotics. We just got back from the farm last night. Today we unpacked and then went to watch Alex play fastball. What a beautiful summer day.