Fly away

I'm flying away for a little trip to stay with Alex for the weekend, so you won't see an update till next week. Miranda's staying here with the kids (Yeah for me!).

Hope is actually doing a little better. She's only crying for about an hour each evening, maybe the meds are starting to help. Still hoping...

Hope

Interesting note: Hope didn't cry at all today (she's been crying since November). I was even able to pick her up and cuddle her, which usually starts the crying. We had a lovely evening.

Here is one of my favorite video clips of Hope before she started deteriorating. She was so full of smiles and energy. She's 9 months old here (April 08).

Bye bye Daddy

We said 'Good-Bye' to Alex again. He's away for another two weeks. The photo you see here is a younger Brodie watching Alex leave for work. I thought it was cute, so I shared it.

Ashley still smiles, she enjoyed lots of cuddles at my cousins bridal shower this weekend. Hope is still having oodles of seizures and significant crying spells each evening. I guess that means, that nothing is new around here.

Take care everyone.

Hope

Hope is having a nap right now, what a lovely sound! Not crying, just sleeping. Increasing all these meds has made her pretty sleepy, but those effects will wear off as she grows tolerant to the side effects...then we'll see if the crying returns.

Yesterday she was playing with Ashley's switch toy, and it appeared that she was happy about it. Touch the button...music comes on...lift your hand....music stops. It's kind of fun and then you get singing with Fred Penner and the music turns off and you feel a little silly! Still not sure if she was doing anything with purpose, and I'm more inclined to think that it was just her normal jerky hand movements causing the thing to activate.

Thanks to everyone for all the birthday wishes.

Birthdays!

It's been a little longer for an update. With Alex returning on Saturday, and hosting two separate birthday parties on Sunday, and taking Brodie out for his special day yesterday, we've been wonderfully busy.

Brodie had a great time with friends for his birthday party on Sunday, and Ashley enjoyed her cuddles. The kids had some fun outside playing hockey and Brodie says that was one of his favorite parts.

Happy Birthday Ashley, you're four today. We'll make sure you get a lot of cuddles. Here you'll see Great-grandma Lil holding Ashley.

After a rough week last week, Hope is having longer good periods each day. I still sit there and wonder how her little body does it...especially when I see her limp and breathing 'bubbles' for long periods each day, but she still opens her eyes with a sweet look each morning (and then cries all afternoon).

Sick Hope

Hope had a rather hard evening. A lot of seizures and vomitting. It makes me sad because I start wondering if her body is just tired and not tolerating the food as well anymore. She doesn't have the flu anymore, she just vomitts every now and then. It was a limp, unresponsive little girl that I put to bed tonight. I know Ashley managed to get through everything, and chances are that Hope will too, but I can't help but think I better hold her more often (just in case).

On a brighter note...Brodie and I had a great time skating in the back yard today. All that warm weather and rain finished off our ice rink perfectly. It's wonderful to get some fresh air.

Interesting...

There's always something to keep life interesting.

Brodie's been sick since last Thursday, usually feeling good during the day and then fevers and cough at night. Sunday he complained of feeling sore all over, but was still running around having fun. Monday morning when he woke up, he couldn't walk, or even stand up. His calves hurt so bad, he yelped when I touched them. I had to lift him onto the toilet to pee. As the day went on, he was able to stand up and eventually walk. But he just shuffled around like a penguin. We saw Dr. Connor that afternoon, and it was decided that Brodie had strep throat (apparently you can get very achey), and now he's on antibiotics. Today he's running around like normal, and even helped me shovel ice off the driveway. Bizarre.

Maybe don't ask Brodie about it, if you see him. He's very sensitive about it.

Hope still cries every day from 2pm onward. Ashley is still full of smiles - yeah!

Monday morning

I'm enjoying an early start to the day. We had a good weekend, despite Brodie being sick (he's still sick). Hope is doing much better, even though she still surprises me with a little puke every now and then.

Sunday was great. We managed to get to church and enjoy the pancake breakfast afterward. Then had friends over to make the day more lively. I think Alex is starting to feel left out! He'll be home next Saturday.

Interesting note. I didn't realize how swollen Hope was getting until the corner of a light blanket laying on top of her face, left it's mark. Not sure what the swelling is from, but it could be the meds. She's got quite a handful of syringes now.

Better day

Look at these smiling kids, doesn't it just make you want to smile too!?!? It's a much better day today. We might even make it to church tommorrow.

Smiles to everyone!

Yellow Tulips...

There are some lovely yellow tulips sitting beside my computer, that give me a 'lift' up when I glance at them. I forgot how much a little color can brighten a corner (and moments in my day).

Hope seems to be back to her normal, crying self. She's still very cuddly in the morning though. Brodie is sick with fevers and chills and coughing. Ever since those Melaleuca vitamins ran out, he's been getting sick like crazy. Ashley is fine. Alex is still gone. I'm tired and a little down.

Looking forward to a fresh day tommorrow.

Smiles

Ashley loves her cuddle time. This is Miranda, our respite worker, who helps us every day. Good thing she loves cuddling cute little girls, because there is a lot of that around here.

Hope is doing great. Some serious coughing, and one vomitt episode related to the coughing, but mostly smiles and coo's. She's been so sweet today.

Bath time

Hope was well enough to have a bath today, so I would say she is doing better. We're trying formula today, and she hasn't thrown up yet, but she's coughing like crazy. So the thought is that she probably just had a stomach virus/flu bug that is now on to the 'cold' stage. She looked pretty alert for her bath this morning and was even cooing. Later she had a good, strong coughing spell and then went right to sleep.

So, I'm not plagued by thoughts of deterioration and funerals anymore, and it's time to get busy making Valentine's Day cookies. This week is definitely looking better.

This morning

This morning Hope is still sleeping, she did vomitt last night, but mostly she slept. I'm not too sure what's going on with her, but I'm glad we're getting a lot of support from the Palliative Care team. It's really too bad that Alex is gone for two weeks, I know he wishes he were home right now. He left Sunday morning, so he missed out on our little trip to Emerg.

Brodie is showing you his pirate face in this photo, and Ashley is all happy that she's being held. Thank you so much to Michelle and Gio who stayed with the kids yesterday. The best part of yesterday, was that Brodie got to play with Ethan (Michelle & Gio's son), who happens to be his closest friend.

To ER

We spent the day in Emerg today with Hope. Still puking every 15 minutes with a lot of old blood, and no wet diaper, and not keeping her meds down since Friday morning...not good.

Of course, we got there, and she started tolerating small bits of fluid. Then they gave her a strong antinausea drug (usually used for chemotherapy patients), and she did even better. As soon as she had a wet diaper, we were ready to go home.

Hopefully it's just a bug and she'll keep getting better.

So, we're home with Hope and very glad for it.