Thursday, December 31, 2009

New Years Eve...

Happy New Years Eve to everyone! I was just about to sit down here and write that Hope hasn't thrown up while on the Ganisitron....and then she started vomitting...A LOT. I guess we ran her feeding a bit too fast, she has an extremely sensitive gag reflex.

We've had a good Christmas. The girls have had some great naps as you can see, and Brodie has been full of 'beans', just bouncing around everywhere.

His favorite gift was the Nerf guns and target vests from 'Uncle' Cam! I was happy to see the guns came with protective goggles!!!

We finally found a van. Alex flew to Regina on his birthday to pick it up. It's almost exactly what we had before....not exciting, but good enough.


Thursday, December 24, 2009

Hope

Brodie still asks to hold the girls sometimes...as you can see, Ashley is a little big for him!

Hope hasn't thrown up since we started the Ganisitron (med for nausea and vomitting). I'm very relieved.

Merry Christmas everyone!

Tuesday, December 22, 2009

Hope is sick again...

Hope started puking again last night. Sooooo disappointing. I called Palliative Care right away and got a perscription for Ganistitron (the anti-emetic which helped her last time), and it was delivered tonight. So, we'll see if this stops it in it's tracks.

Everyone else is healthy.

Sunday, December 20, 2009

Christmas in Killarney!

Hope is definitely doing better. We went out to Killarney this weekend to celebrate Christmas with my family. Hope did not vomitt at all. She coughed and sputtered in the carseat, but we suctioned her as needed, and the drive went well.

We were excited to stay at my sister's place this year and enjoyed wonderful hospitality and snow. The snow was a big hit because we hardly have any, and they have a lot. Which means we were able to take the snowmobiles out. Brodie loved it! He also enjoyed playing with the kittens. It was a good weekend (and Alex started feeling better just in time for the weekend).

Thursday, December 17, 2009

Smiles

Christmas is coming. Brodie is excited, Alex is too sick to care and I'm trying to be balanced. Ashley is doing great, she got over her cold in a day. Hope is looking much better too. She was awake and almost smiling for a couple hours yesterday. This morning she's awake too, and she hasn't been coughing yet this morning. So, I'm guessing that she's better. I'm never too sure with Hope.

Monday, December 14, 2009

Cold?

This is Ashley at Christmas 2005, she was 10 months old. Alex and I were discussing whether or not Ashley was ever as bad as Hope is now. You can see her puffy face and arms in the photo, but what I remember is how floppy and lifeless she was most of the time. She got passed it and we're hoping that Hope will too.

Hope isn't throwing up anymore, but she definitely has a bad cold and now she's been sleeping all day, she only popped her eyes open once. Makes us a little uneasy. Unfortunately, Alex is very sick as well. Brodie still has a cold, and Ashley has one now too! So far, I'm the only one that isn't sick.

Ashley came back with us on Sunday, and now we're all home together. I'm still not lifting the girls, so I've got a lot of help booked for this week.









Friday, December 11, 2009

Better?

Hope kept all her meds and formula down yesterday, thanks to a better anti-emetic. We started Ganisitron a couple days ago (for nausea and vomitting), and it is definitely helping.

We finally found a stroller that would work for Hope. It has the length she needs, easy fold-up, lightweight, and most important...the seat reclines so that Hope can lie down. I was happy to see her off the couch yesterday and in the kitchen with me!
Brodie made a few cookies yesterday, and Hope got to join in the fun. Sort of...she started coughing and then went to sleep!
Tonight we will travel to Brandon for Christmas with my Mom's family. We'll be able to bring Ashley back with us. We almost bought a van yesterday and then backed out. It was a seven passenger, and we decided we definitely need an eight passenger. So, we still have a rental. We were happy that Autopac decided the other driver was 100% at fault, so I don't have to pay my deductible. Yippee.







Wednesday, December 9, 2009


Hope is keeping a bit of formula down so far today, but now she's coughing up green stuff. So, it looks like she has a cold. I was happy to see her eyes open this morning...

Monday, December 7, 2009

Hope

video

Here's a cute little video taken in March of 2008. You can see Brodie showing Hope his hockey cards. Although Hope doesn't seem to focus on Brodie, she was always excited when anyone was around her. So even if she's not looking at you, she would be smiling at you.

Hope is still having a hard time. She did not tolerate her formula today, but she did keep down some fluids and her meds. She's still having wet diapers too.

Sunday, December 6, 2009

Hope

We brought Hope back to the city today. She's still sick, but finally keeping meds and water down. We went out to Killarney early because Hope was doing very poorly on Friday, we weren't sure that she would make it through the night. But she's a tough little cookie, and now she's back to her spot on the couch, and I feel a little better. Ashley spending another week with Mom and Dad, because I still can't lift.

Wednesday, December 2, 2009

Hope at 6 months old...

A little snapshot of Hope at 6 months old...

video

Unfortunately, Hope started vomitting again last evening. This is the fourth episode, and although it's easy to say she's done this before, I'm starting to feel the heavy feeling of a downward spiral for Hope. Hope and Ashley are still with Mom, and I'm considering how I could go bring Hope back to me. Every movement causes Hope to vomitt or heave, so I'm pretty sure that a 2.5 hour car ride would not be an option right now. Mom will do a great job, but it's painful not to be there. I'll figure it out.

Monday, November 30, 2009

Home Alone!

Look at the funny thing that ended up in our garage! And NO it did not stay. Alex is trying to convince me that a truck would work for us. Hmmmm...
My neck is healing well, as long as I don't do anything! Luckily Mom was here last week to help and then she took the girls home to her place. Yes, I let both my little cuddley girls go. It's probably the only way that I won't hurt myself. So I'm home alone during the days, and Brodie is getting fantastic attention in the evenings. It's not a bad thing.

Mom is loving it, of course.


Monday, November 23, 2009

Helping hands

We have been so lucky to have incredibly generous friends and family. Lots of help and support. Mom and Dad are here right now (working hard as you can see!), doing a great job of keeping me away from the lifting. It's a huge relief to have them here right now. We had a lot of running around today with police reports, and MPI reports and appointments. It looks like we'll have to find a van pretty fast. Our van is definitely a "total loss" and once we are given an offer (which will happen tommorrow or the next day), we are no longer provided with a rental vehicle. So Alex is busy scoping out the options.

I'm so glad to hear that so many of you enjoyed seeing the kids photos. We had fun taking them. Everyone is doing well. I'm healing and the muscle relaxants definitely help. I just can't bend my neck any direction. No driving for me, I can't even shoulder check!

Friday, November 20, 2009

Brodie too!

As you can see, I have a photo of Brodie too. We had a little photo shoot here the other weekend, because I didn't want the hassle of going to Sears. It was good to get the pics done at home and cost effective too!

Speaking of cost effective. We'll be counting pennies even more carefully now that our van is all 'smushy'! I was in an accident this morning, went to the hospital in an ambulance because of neck pain and had some xrays taken. I am fine, but VERY sore with a nasty case of whiplash. I won't be lifting the girls anytime soon, and our trip for this weekend is now cancelled.

I really shouldn't plan any trips for us, something always happens...






Thursday, November 19, 2009

Hope

Hope is doing better, we're just waiting for some results to see if she has a UTI. I'm healthy again and I'm on my way to work tonight for a night shift. Have a great day everyone!

Wednesday, November 18, 2009

Ashley Smiles

Hope is doing better, she only threw up once yesterday. She's coughing a lot today, but it's probably related to secretions. Ashley never got sick, and as you can see...she still gives us wonderful smiles.

Saturday, November 14, 2009

Better

Hope is looking a bit better today. She's keeping down her meds and some water, so we'll start trying to feed her tommorrow. Thanks for the supportive comments, thoughts and prayers. Watching Hope get so sick still leaves us feeling uneasy and unsure of what's to come.

Thursday, November 12, 2009

Hope is sick

I know it's been a while, I had meant to update this blog on Sunday. Unfortunately, I was sick, and now Hope is sick. She's been vomitting since yesterday, same as last time. She has horrible retching and vomitting that leads to puke that is full of old blood (likely because all the vomitting causes little tears in her esophagus). She hasn't kept any meds down of course, not even a tiny little bit, she just pukes up everything I put in her tube. I'll just wait it out, same as before.

Ashley seems fine, and Brodie puked on the bus yesterday. He doesn't think he should take the bus anymore, it leads to vomitting!! I told him that he can't have snacks on the bus anymore, he's probably 'car sick'. Now he wants to be picked up from school everyday (and no wonder, his bus ride home is 90 minutes!).

I'm still pretty sick myself, so I'm hoping to feel better soon. Nasty stuff going around.

Sunday, November 1, 2009

Halloween

I missed out on the Halloween fun yesterday while I was at work. But Brodie had fun. Check out the cute care bear costume that my mom made when I was a kid. Brodie thought it was great!
Ashley didn't see to mind trying on the other care bear costume...
We made some interesting pumpkins on Friday night...

And this is the costume that Brodie wore trick or treating last night.

That's it, I've got to run. Another day at work.



Thursday, October 29, 2009

Boo...

Brodie and his friends enjoyed Boo at the Zoo last night. Although it sprinkled rain a bit, it was quite warm and we enjoyed seeing the kids get excited. Brodie is the storm trooper who is pointing a toy drill at you!

Today I was lucky to have Miranda helping me as we stood in line for 2.5 hours to get the flu shot for the girls!!! I didn't anticipate such a long wait, so it was good to have a friend along for company. The girls behaved perfectly of course, and not a peep out of them when they got their needle.


Wednesday, October 28, 2009

Today...

Ashley fell asleep in her stander today. I was amused so I thought I would take a pic and share it with you. Brodie stayed home from school because he was sick on the bus yesterday. Today he is completely fine, and keeps telling me that he feels 'really good, good enough to go to Boo at the Zoo'. Interesting.
So, Brodie had a fun day at home today. He was excited to play Lego with Ashley, our respite worker. Ashley and Hope enjoyed the sounds of Brodie at home.

Sunday, October 25, 2009

Respite Weekend

On Friday morning we packed up the girls and took them to their weekend sleepover (our respite). Here you can see Hope in the van, ready for the drive.

When we got there, Callista and Brandon were excited to see the girls. We got them settled and went on our way.
We had some fun with Brodie at Fun f/x and then had a movie night. We were happy to be able to sit and watch the movie without getting up to change diapers, or stop to give meds. The next morning we drank coffee while listening to Vinyl Cafe, and Brodie sold the pumpkins that G&G Allen had brought in from the farm.

We were left with three pumpkins at the end. Not bad.

This morning we took Brodie to his hockey game...then Church...then breakfast at the Jolly Mug! On the way home we commented that it's a good thing we don't get breaks like this very often, because we become rather lazy when the girls aren't around!

Have a great weekend everyone!




Wednesday, October 21, 2009

Ashley smiles...

Ashley is smiling this morning. I think she's excited to go to Brodie's school. I know Brodie is excited. The first thing he mentioned when he sat up in bed this morning was, "Mommy is coming to school today!". I'm going to help with the hot lunch program, and the girls will come with me. The kids get a hot lunch once every two weeks. It's a fundraiser for the Parents Association.

Yesterday, the girls and I went to Brodie's school to see Al Simmons. Very fun.

Thursday, October 15, 2009

A few pics..

A few pics from our weekend in Killarney.

Vienna (my niece), was fascinated with Hope's blanket. She has fantastic smiles!

Brodie always managed to convince Grandma to play with him. They're playing lego at the restaurant.
This week is flying by. The girls are fine and Brodie's at school right now. I'm off to work this weekend and I think Alex is going to build the fence. Hope it doesn't rain.


Friday, October 9, 2009

Happy Thanksgiving

Hope has a better time in the sitting position some days. Check out her cute little recliner. It gets sad to see her lying on the couch all the time, so we get a little excited to have her in her chair when she is handling her secretions better. More seizures create more secretions, so some days when she's having a 'plethora' of seizure clusters (more than 20), then we let her rest more and try not to elevate her head at all. The days when she isn't seizing as much, we can do more with her, and she appears to enjoy it too.

We had an early 'Thanksgiving' get together here on Wed with Alex's family. The kids loved the attention. You can see GG and Grandma Joan sitting with them... I just woke up from my sleep (I worked another night shift last night), and now will start planning for our trip out to Killarney tommorrow. We'll spend Thanksgiving with my family. Happy Thanksgiving everyone.



Sunday, October 4, 2009

Sunday

All is well here. Both girls are healthy and doing fairly well. Hope hasn't kept up with the smiles, and her seizures have increased, but she still has some fairly awake moments that we enjoy.

I worked my two night shifts this weekend, and am now officially back to work. It feel good, although that is probably because it is midnight and I'm sitting on the computer because I can't sleep. We'll see how I feel tommorrow morning at 7am when I'm getting Brodie ready for school.

Alex did fantastic with the kids this weekend. He managed to get Brodie to a 7:30am hockey game this morning, and then get home to pick up the girls (who were ready, thanks to Lauren) and get all the kids to church by 9am. I am impressed.

Sunday, September 27, 2009

Sunday



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

Smiles

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

Better!

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.

Fever

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

Smiles

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.