Snack Time

Another little tidbit about our house. When Brodie gets home from school it's snack time and cuddle time on the couch. I have the snack ready and the girls ready, and he drops his stuff as he runs in the door, to see what the snack is. Then we watch T.V. for a bit. If I'm lucky, I get to have a cup of coffee as I enjoy my snuggles with the girls.

Today, as I held Hope during "snack time", I noticed the increased frequency, duration and intensity of her seizures. The little jerks are becoming more 'violent' and the whole body convulsions happened three times, followed by about 4 minutes of rhythmic spasms. It feels awful when I'm holding her, but after... she always smiles at me. So cute. Right now, I can hear her in her room making little 'hoo' noises (it's 9:45 p.m.). She sounds like an owl!

I had an interesting evening out today. Miranda (our respite worker) was here so that I could join a friend for coffee (I get lonely when Alex is gone). While we were enjoying some good conversation, I got a call from Miranda. Ashley's G-tube had fallen out!!! Just like that. Crazy things always happen when I leave.

Luckily, Miranda is not afraid of anything around here (her initiation during one of her first shifts was to send Hope off in an ambulance, after finding her seizing in her bed). Miranda was able to insert a new G-tube on her own, while I talked her through it over the phone. Yeah for me, I got to finish my coffee. Perhaps the caffeine is the reason I'm writing so much!!!

On our own

We're on our own for a week. Alex is off to Regina for work. I've got so much help booked, that we'll be more than fine. We'll just miss 'play-time with Daddy', as Brodie likes to call it. Brodie likes to copy me, so lately he's been making a 'To Do' List. It often looks like this:

Today for Brodie:

Playtime with Daddy

Playtime with Mommy

Playtime with Hope & Ashley

Play with Lego

We managed church on our own today, with the help of some friends. It's been a good day. Hope still smiles and seizes. Ashley too.

More cuddles

We've gotten into the habit of eating supper on the couch with the kids (easier to hold them). Today after supper, Brodie decided it was his turn to cuddle the girls. He told me I was allowed to post this photo on the blog!

Hope is still having a lot of seizures, she rarely takes a bottle by mouth now, but she's not vomitting. Ashley was very smiley today.

Cuddles

Alex enjoyed some cuddles with Ashley after work, and Brodie jumped in when I pulled out the camera. He likes to be in on the action.

We have a surgery date for Hope to get her G-tube on December 4th. She'll likely be admitted for a day or two. We'll see how she tolerates the surgery. Ashley vomitted so much after her G-tube placement, that she had to have overnight feeds using a pump. Hope pulls out her NG so often, that it will be nice to have it gone.

new seizure

Hope's favorite thing to do is snuggle into the bean bag chair and fall asleep sucking on her soother. She looked so cute in their, I thought I better share the photo.

It was sad to see her start having a more 'intense' looking seizure today. In the evenings, she is always a little worse. This evening I was lucky enough to have some time to hold her and noticed the increased frequency of seizures and a new seizure that shook her whole body, and scared me a little. She doesn't like these seizures much, and cries more. I gave her some midazolam, when the seizures started to make her cry, but it didn't even phase her this time. I think she's developed a tolerence to the 'rescue meds'. We'll probably have to ask for an increased dose.

Ashley had a great day - some smiles, some seizures and a good nap. The other day, we had her fitted for some new hand splints. Normally these hand splints are funded every two years, but Ashley grew fast. Her hand is one inch 'fatter' than last year. I'm guessing that it's mostly swelling, but who knows. Her hands and arms are rather puffy. Don't ask me why, because I don't know. It's just the way it is.

Have a great day!

Fun times

We had some fun this week with my cousin and her girls. Brodie asked me when the cute little girls were coming back. Ashley enjoyed the noise of the kids and Hope had some cute smiles.

This morning Hope smiled all through church and Ashley did her usual moans and then smiled during the singing. Very cute.

Now we're home, the girls are in bed, Alex is making lunch and we're all getting ready to watch some football. It's great to be home.

Last Sunday

This was nap time for Hope and Alex, last Sunday. I thought it was pretty cute and then forgot all about it, till today. Sleeping babies are so peaceful.

Hope had another day full of seizure activity. I'm not sure how much she slept last night because we put her to bed awake and seizing, and she was still having seizures in the morning. I can hear her still right now, hopefully she gets a good night sleep tonight.