Uneventful...

We had a lovely, uneventful day at home. We enjoyed having Alex home, and didn't even mind watching football all day! Hope had a good evening last evening (no crying) and so far this evening, she's full of happy coo's. Nice to hear.

Happy girls

I like this photo, it looks like the girls are having a conversation.

The girls had a good day today so far. It's only 6:20p.m., so the interesting part of the night is yet to come. But for now we're enjoying some smiles and cuddles. Looking forward to having Alex home tommorrow.

Hugs

Here's Brodie, surprising Ashley with a hug. He wore his glasses on and off today, not to school, because there was no school today (good thing to be aware of!). The first time he tried the patch, was a traumatic experience. He wanted more computer time and agreed to wear his patch and glasses to get it. Once he was all set up, he looked at the computer, then looked back at me with the saddest, pleading look and said, "But Mommy, I can't see!". It broke my heart. My initial thought...I am NOT doing this to him!!!

The conversation that followed was so sad. I think it was a real shock to him that he can hardly see out of that eye, and even worse that he's expected to rely on that limited vision for a good part of the day. I still don't agree with this therapy. Why does he need two eyes anyway, he's perfectly fine with one.

Now that I've ranted a bit. Ashley was smiley and cuddley today. Hope was great until about 7:30pm, then she started her crying/screaming/seizing part of the day. Completely, inconsolable, she settled around 9pm.

It can feel a little hopeless when one can not do anything for their child.

Crying

When Hope starts crying in the evening, there is just no stopping her. I think I just need to give up on trying to console her, it's impossible. She was having so many seizures, and crying so much, I decided to try the midazolam again. Did it help? NO! Not only did it not help with the seizures, she didn't even get drowsy. She just kept on screaming for another hour. Eventually, she started calming down on her own, and now (at 10pm), I can hear her in her bed making little 'ahhwooo' noises, that sound suspiciously happy. Interesting.

As you see in the photo above, we had a day in the vehicle, going to appointments. Brodie and I picked up our new glasses, and Brodie did very well. He didn't fuss at all about wearing them, but he won't let me take a picture yet. He's going to wear them to school tommorrow, at least that's what we discussed and planned. I'll be surprised if he actually leaves the house with them on his face. It worked out rather well that my glasses broke last week, and I was choosing new glasses at the same time as him. Now he thinks it's a competition to see who is cuter! He is, of course.

You can see Ashley in this photo, all bundled up in a fantastic snowsuit that was made for her. It was made nice and warm, with zippers down both legs, and a blanket to go with it. We have so much trouble keeping her warm, this is just perfect. Thank you so much to Sheila in Haywood, you have blessed us.

4 days to go...

Four more days until Alex gets home. We're fine of course, just a little tired. I think I'll make my 'To Do' list shorter for the next couple days. Tommorrow we pick up Brodie's new eye glasses and start with the patches. We also take Hope to see Dr. Connor for the pre-op check-up. Only five appointments this week (not including my three appointments)... not bad.

Hope was a little 'out-of-it' today, but generally fine. No vomitting, but completely unable to take a bottle, and still having multiple seizures. We did hear some wonderful 'coos' when we were at the chiropractor today.

Brodie had a treat and was able to go watch Aunty Deanna's soccor game. I love it when he gets some entertainment out of the house.

Ashley had a beautiful day, with wonderful smiles. She is doing very well right now.

Happy Dance

Brodie finally gave me permission to post this video. He loves dancing around the house to whatever music we have chosen for that day. This time he helped Ashley dance too. You'll see her in her "Stander" which was made for her at RCC (Rehab Centre for Children - our favorite place). The 'stander' helps with bone density(wouldn't it be awful if her leg broke while I was trying to yank her pants on???!!!) and helps her hip joints so that she isn't at risk for hip dislocation.

It was good that we got an early start to the day because Hope decided to start 'upchucking' her stomach contents again. She's coughing today, and crying a bit with teething. Poor thing had a rough day. Too many seizures to count.

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.

Sad crying...

Hope has had a hard evening. Too many scary seizures, causing her to cry/scream and cry some more. The drugs have not helped this time it seems. The intense crying lasted for about three hours despite the extra meds. Occasionally we would be able to console her with cuddling and soother, only to have another seizure start a new crying spell. Very hard to watch.

Now, she's in her bed making little sad noises, but not crying. Hopefully she falls asleep.

Ashley had a lovely day, with some little smiles.

Smiles

We are still blessed with smiles and coo's each day. Hope is doing well, despite the seizure activity that continues. I guess my idea of 'doing well' has changed a bit. My perception is that things seem a little more stable right now because we've gotten used to the seizure activity and Hope's decreased movement on the left side.

Now we're focusing on more chronic issues, like positioning. Hope has a strong preference to keep her head and eyes to the right. It doesn't matter how many times I reposition her head, she shifts it right back. I'm trying to avoid the flattening of her head on that preferred spot, like Ashley has. Ashley has a strong preference to turn her head to the left, which eventually left her with a flat spot on the back of her head, making it difficult to position her head in any other way.

It's kind of fun, because I'll turn her head to the left, and she'll smile and turn it right back the way she likes it. Little munchkin!

Hockey?

Ashley's cheering on Brodie while he plays 'mini hockey' against Daddy. Brodie gives Ashley a 'fist pump' whenever he scores, and of course, Ashley gives him a little smile back. This little hockey game was Brodie's first purchase from a garage sale (he used his own tooney).

Hope had a good day again today. Smiles and coo's, and she drank one bottle today. No vomitting, occasional brief seizures. It was a great day.

Fun with Cousins

Hope is checking out her cousin, Ian (my sister, Kyla's little guy) in this photo. We had our first gathering in the new house, and I would say that it worked quite well. The cousins had fun riding 'cars' in the basement, actually named 'funtown' by Brodie, and us adults enjoyed some food, visiting and baby cuddling.

Ashley came back with Grandma and Grandpa, ready to join in the fun. Hope and a great day, she really seems to be holding on to this 'good spell'. She is just full of smiles and coo's, I love it. Brodie had so much fun playing with his cousins.

Lazy morning?

Brodie decided we needed to have a 'lazy morning'. I was curious what that meant, and was pleasantly surprised to find that it meant playing by himself and reading his lego magazine, in his PJ.s of course. He really makes life easy for me sometimes.

By the way, I changed the settings on the blog, so everyone could comment. I didn't realize that I had restrictions on comments, and certainly don't want to restrict comments. Comments are what keep me going here. I love to hear from everyone, thank you so much for the support.

Brodie's eyesight

We finished up some appointments last week regarding Brodie's eye, and it looks like we'll be going ahead with treatment starting in the middle of November. Brodie has amblyopia or 'lazy eye', and basically we have to strengthen the weak eye. His left eye has 20/20 vision, but his right eye can only read the biggest 'E' on the chart with a very strong lense to assist. Usually treatment is recommended BEFORE the age of 5, but recent studies show that it's worth attempting treatment even up to the age of 17 years old.

We're not sure that treatment will help much (according to the first optomotrist), and I'm not sure that I have the time/energy to enforce the plan, but we'll give it a try. Sighhh..... It means patching the good eye when he's not in school and wearing a strong lens on the weak eye (and if anyone tells me that this should be easy, they better get themselves over here to convince him to wear the silly patch). I'm not sure how my independent little guy is supposed to get himself breakfast when his only eye has a patch on it, in fact I'm not anticipating much fun in this adventure at all.

We'll probably figure it out just fine, and this will fade into the background with all the other 'bumps' we've encountered. So, for now, I'm not going to worry about, or even think about the work ahead with Brodie. It doesn't do any good to focus on how busy I'm going to be, so perhaps some of you could help me out with a few prayers in that direction.

Happy Hope

Hope has had a wonderful day, full of smiles and coo's (yes, seizures too). It's so fun to watch her try to pull out her tube that I had to post a little video. It's 9:15p.m right now and I can hear her in her bed. She's making some very joyful noises, and somehow Brodie is sleeping through it. For those of you who would not know, Brodie was 'lonely' in his room, so we moved Hope in and now he's happy. His room was hardly used during the first two months we lived here, because he always slept with the girls. Too cute.

Lotsa Treats

Halloween was a success in Brodie's opinion. He counted his treats today, and the total came to 140. Then he divided his treats into two piles. One for himself and one to give away. I was surprised that he was so generous, almost half his treats went into the pile to give away (I wanted to sneak some back into my own private stash, but I restrained myself).

His school sends the 'unwanted' treats to a local Dentist office, which then donates $2 per pound of candy to Unicef. I'm not sure what they do with all the candy, somebody said they might send it to a shelter in the city.

Hope had a lovely weekend. We saw some nice smiles and enjoyed some little coo's in between seizures. Her smiles are lopsided, her movements are very spastic and she has a strong right sided preference (head and eyes constantly to the right), but at least she's out of the 'comatose' phase that we were treated to last week. I hope she gets a little closer to her 'normal' self still.