Wednesday, March 31, 2010

Spring Break

Hope is doing better, and it's so nice to be able to cuddle her and not worry about vomitt! She's starting to look uncomfortable at times, and it appears that she's starting to stiffen up and posture like Ashley does, even moaning the way Ashley does. This is somewhat disturbing for us. We are constantly trying to keep Ashley comfortable, so I can't imagine both girls crying and moaning all the time. Hopefully we can find the right balance of meds/cuddles/excercise that can help with comfort. The Palliative Care team has been a great help in managing the meds and helping us problem solve.

Brodie is having a great week. Playdates every day. Spring break is so much fun with him home. The girls love hearing the sounds of the kids.

Saturday, March 27, 2010


We had some nice moments outside on the front porch yesterday. It's so nice to see warmer weather and sunshine. Ashley is still moaning a lot, but we're working on that.

Hope slept well last night, and woke up with a very wet, flooded diaper. Yeah! She got her bath and hair do, then blessed us with cute little, 'almost smiles'. We had some lovely cuddles this morning, and she even made some cute little 'Hopey noises'. She's definitely better.

Friday, March 26, 2010

No vomitt...

My night shift went well and I just woke up. Hope looks pretty good right now, although a little 'freaky' with this wide eyed staring thing she's doing. Her eyes are wide open and fixed for the most part, making me check to see if she's breathing (which she is), and occasionally she will blink, so that's good. I'm guessing, there is some constant seizure activity going on, that I can't see.

No puke today, and she's been getting watered down feedings. I was expecting that she would have a wet diaper this morning, but not yet. Hopefully she had one while I was sleeping, I'll be asking Alex when he gets back. feels like we're always waiting to see what happens. Not daring to say what could happen. Waiting for the relief of knowing she's gotten through another episode.

Thursday, March 25, 2010

Meds in...

Brodie just left on the bus for school, Ashley has had her meds, feeding and stretches, and Hope is still awake but not puking. She's kept down three meds so far this morning. I'm giving 3ml amounts every 20 minutes, hoping that her stomach can handle it. so far so good.

It's day 3 of the 'episode' and she's following her expected course. She's having more seizures than awake moments, she hasn't slept since this started (the seizures keep her awake), and she hasn't pee'd since Tuesday. Once the meds are in, I'll start a slow drip of pedialyte and see how it goes. By tommorrow, she should be looking a whole lot better.

In the meantime, I'm hoping to get a nap this afternoon, because I'm working nights tonight.

Wednesday, March 24, 2010

more vomitt...

This pic was taken in Sept/08 when Hope was 14 months old. The same month that she started deteriorating a year and a half ago.

This morning I got up to find Hope and a puddle of brown, icky vomitt (her stomach started bleeding again). This I expected, and last night before I went to bed, I positioned her well enough that her face wasn't laying in the puddle this morning (my biggest concern because her face gets rashy and bleeding when this happens). It's always hard to position her, because her seizures become so intense during these episodes, that her little body is thrown all over the place. Luckily, the head banana's helped keep her head from flopping down into the puke puddle. Head banana's are the white, soft pillow things holding up Hope's head in the photo above.
Hope was puking every 5-10 minutes last night, for about 3 hours before we went to bed. Alex stayed up longer so that he could suction her, and then I got up earlier, to try and limit the time that she's puking by herself. Her little stomach just heaves and heaves, and it's so sad to watch.
This morning she's only puking about every 20-30 minutes, and it's coloured with old blood becuase her esophagus breaks down and bleeds with all the vomitting. Her seizures are worse this morning, more frequent and more violent, but that is becuase she hasn't kept a drop of anything, including meds down since 1pm yesterday. She hasn't had a wet diaper either, but that makes sense with the lack of fluid.
Overall, it sounds bad and it looks bad...but she's done all this before. In fact she does this every month and I just happened to give you a more detailed picture this time. She'll get over it like she always does and then we'll carry on. In the meantime, she's stuck on the couch and not travelling anywhere.

Tuesday, March 23, 2010


Well, it's a good thing I got my cuddles with Hope yesterday and this morning, because she just started throwing up again. Poor thing. Ashley is sleeping finally, after moaning all morning, and then having a 20minute seizure, she finally fell asleep.

So it goes...the ups and downs of life.

Monday, March 22, 2010


Brodie finished his last hockey game this weekend. He had a great team and fantastic coaches, making it an exciting introduction to hockey life.

I worked this weekend, Alex juggled the girls, Brodie's hockey, two birthday parties and his own hockey tournament...making him 'Father of the Year' for sure.

The girls are doing great. Ashley had a much better weekend, with hardly any moaning or crying and it seems that her cold is done. Hope is full of smiles today and I've been able to hold her twice today, without a coughing fit. It's a good start to the week.

Tuesday, March 16, 2010

Doing well...

Hope is doing so much better. We are able to hold her again and she doesn't seem to be sick at all right now. I was even able to take the girls out for a walk today, which was such a treat. What a beautiful day.
On the weekend, we were lucky enough to have Grandma and Grandpa Neufeld visit. We all went to Brodie's hockey game and enjoyed cuddling the girls. Ashley still has a cold, but has a strong cough and I'm not worried about her. She's pretty cute when she sneezes. She starts blinking her eyes in a startled, kind of way and then scrunches up her nose. So funny.

Monday, March 8, 2010


We had a wonderful Sunday together, full of cuddles. Ashley was so fun, she smiled all day, even though she has a cold. She was coughing and sneezing and sniffling, then smiling. I just finished saying the other day, that Ashley never gets sick...not even a cold! Shouldn't have said that, I guess! Hope is doing fairly well, still coughing and sleeping a lot, but having more awake time each day, with cute little 'half-smiles' for us.

Brodie had some fun with his friend, Reece, while we cuddled the girls.

In the evening, we tried to go skating at St. Vital park but it was too slushy. I guess outdoor skating is over for the season.

Friday, March 5, 2010

Looking better...

Well, Hope shocked me by perking up today and staying awake for a few hours at a time. Her chest sounds a lot better and her breathing has evened out a lot. She even smiled a bit when I held her. I'm pretty sure she still needs to cough some more, but at least she's waking up enough to do that now.

It's been a long week of wondering if she was going to make it. Sorry about making you worry too. It's hard to know what's happening with her, and I appreciate those that walk this journey with us. So, I'm off to work tommorrow and then we'll have a nice family day on Sunday.

Have a wonderful weekend.

Thursday, March 4, 2010


Well, Hope managed to cough once today and get up a bit of thick, yellow stuff. I was hoping to see a little more action, but she's still sleeping 90% of the time. She sleeps through her morning care and even getting dressed. She did open her eyes a few times today, but it never lasts long and then she has a seizure and goes back to sleep. It's a peaceful sleep and that's good.

Wednesday, March 3, 2010

Hope is sick again...

Look what happens when I limit the computer time!!! Brodie shows off his sensitive side and finds a book to read Ashley! I just love having him around.
We had oodles of appointments last week and it went great. We spent a day at Rehab for Children getting the girls weighed and reasessing their formula requirements. We also worked on AShley's kidkart and stander. Then we decided to have Hope measured for her stander, because I made the mistake of saying she's doing better. The next day, she threw up...

This past Sunday, we found her in a puddle of puke when we went to get her in the morning. She probably got some into her lungs, because she's been sleeping since then and her chest sounds horrible. Today is the first day that she's kept her eyes open for more than a few seconds and she's finally started coughing up some of the phlegm, but it leaves her exhausted and she goes back to sleep. So, I'm not too sure what direction she's heading, but we're having some quality cuddles just in case she doesn't get over this. She doesn't have a fever and she's not puking, so that's good.