Fun in the snow

Both girls still have a cold. Ashley has a strong cough and is following her normal schedule and smiling a lot. Hope looks a little sicker and hasn't woken up yet today (it's 1:30pm right now). When I move her to another spot, or change her diaper, she does cough, she just doesn't wake up. So, I'll let her sleep for now and hope that the rest gets her better quick.

Hope says, 'Thank you for the cozy sleeper, Aunty Kyla'.


This next photo is our backyard. Brodie and I built a little snow slide that we hope will grow bigger as more snow comes. The ice rink is still in progress. Brodie has been having fun outside with our neighbour, Savannah.

Happy New Year everyone!

Two sick girls

Both girls have a cold. Hope is especially snuffly and rattly, with multiple seizures and a strong cough. Lots of cuddles today. Ashley is still smiling a lot and has a very strong cough.

Not too exciting.

Brodie gave the girls a big hug for the Christmas gift they gave him (good thing I thought of that). Ashley is still doing great and we're all having some lovely down time after the excitement. The best part of today was watching Brodie have fun outside with our neighbour's daughter.

Looking at Hope, I get a little depressed. She's content in the mornings and sometimes you see the hint of a smile and an occasional coo. But the crying starts earlier every day. It's been 5pm to 8 or 9pm for the most part, and then yesterday it started at 3pm. Some days she can be slightly comforted by holding or a soother, but usually the holding just makes the crying worse. I can't seem to stop trying to comfort her. Inevitably, my cuddles and songs make things worse and I have to put her down and let her cry. I miss my smiling Hope.

Make a Smilebox slideshow

Neufeld Christmas Gathering today

We had my family over to our place for Christmas today. It was great. The kids were so fun to watch and Ashley smiled almost the whole day. Hope had her usual crying spell in the evening but actually went to sleep at bedtime both yesterday and today, probably because I've stopped using the midazolam. It's nice to see her sleeping at night again.

Christmas fun begins.

We're just back from Christmas in Brandon with the Falk side of my family. Brodie had a great time playing with the cousins, and Ashley smiled with all the noise and cuddles. Hope smiled all day, and still had a hard time in the evenings. In fact, she was awake the entire night Saturday night. I'm at a loss, as to what to do.

Looking forward to family time this week.

A game of catch.

Here is Brodie playing catch with Hope. Who says he can't play with his siblings?! We can make anything happen. We just put the ball in Hope's hand and manipulate her arm to throw the ball, and Brodie throws it, so that it lands in her lap. I love it when he gets playtime with the girls.

Hope had a rather bad evening last night. The crying continues each evening, but last night it was escalating and the Midazolam (even though it's increased) is still ineffective. I wish I could fix it, whatever is bothering her. Ashley is full of smiles.

Christmas baking...

Brodie and I were doing some Christmas baking, and Alex turned on some music. Not Christmas music...but 'poker-face'. I had a great video of Brodie and Alex "gettin down", but Alex got to the camera and erased it before I could stop him.

Hope and Ashley are the same.

Pretty good...

Everything here is settling into a nice routine. Ashley smiles and naps, Brodie plays and goes to school, Hope smiles, has seizures and cries for a couple hours in the evening. At least she isn't screaming anymore.

Brodie is doing fairly well with his glasses and patch. He even told me to post this photo on the blog, so he really must be used to it. It's nice to see him adapting.

nap?

Look what happens when Alex says he just wants a little cuddle?!?

Did I forget to mention that we are trying to keep Hope awake during the day, so that she can go to bed at 6pm and skip the crying/seizure episode that happens every night? Apparently, Alex missed that part. So now we have a 'crying Hopey' instead of a 'sleeping Hopey'. Oh well, we'll try again tommorrow.

Good day today, no sickness and plenty of smiles all around.

A day out...

We had no puking today, and decided to have a day out. So we packed up all three kids and went to the mall. A first in over six months, possibly longer since I can't remember the last time we had a nice day out that didn't involve appointments. The girls did great, had naps in their stroller, and I got some Christmas shopping done. Brodie had fun pointing out the good toys to buy.

Hope is crying right now, but not screaming. Wish I could figure her out.

Winter Concert

Brodie's first Christmas concert today was called a Winter Concert and it was so cute. Brodie had a quirky smile for us every time he glanced our way. He managed to recite some of the words and get into some of the actions, but spent a lot of the time smirking at his friend, Reese, who was standing beside him.

The girls were both on a pedialyte diet today, and no vomitt was allowed. Pretty good day, although Hope is back to her crying spells in the evening, despite having no nap and going to bed at 6pm.

Messy evening...

Wow, I just finished telling someone today, how well Hope is doing after her surgery. She did great for her physio appointment today. She was smiley and wiggley and interactive. Ashley slept through it (we wondered if she was sick). Then this evening both girls started a puking competition. First Ashley, then Hope, then Ashley, then Hope again...and Hope again. I guess Hope wins. I have to admit, it's not my favorite past-time...puking competitions that is. I'm hoping we get back to the smiling fun soon.

fun with Grandpa...

Brodie had some fun outside with Grandpa Neufeld today. They were preparing the spot for our ice rink. If we can't get him to the rink to play hockey...the rink must come to us. We're all excited.

Hope had a normal day, with a lot of seizures and some attempted smiles. I tried something different today. I let her sleep in (because she isn't sleeping at night), and then didn't give her a nap, and put her to bed at 6pm. Voila! No crying spell. It's almost 10pm and she's still sleeping, maybe it's a breakthru. Yeah for sleeping babies.

Better...

Today looks better for everyone. I was able to eat my first meal since last Thursday. Hope had a great nap, and the doctors approved a midazolam increase to help with the crying spells in the evening. Brodie enjoyed some fun family time using his patch/glasses, and seems to be settling into the routine (although he refused to wear the glasses out of the house today). Better yet, Brodie shocked me by pulling out his glasses and patch for Grandpa Neufeld today, and they are sitting together enjoying a book right now. So special.

Home!

Hope came home yesterday, and is doing fairly well. I'm still rather sick (okay, very sick), so I didn't manage to get to the computer yesterday.

Hope seems to be tolerating her feeds if we go very slow. She continues to have her bad evenings and because of the increase in seizure activity, she does vomitt. This morning she seems well, with a couple tiny smiles and some coo's.

One more night

Thank you so much for all the comments and well wishes. Hope is doing quite well, as far as I know. I'm home sick with some sort of horrible flu. Alex is at the hospital with Hope. They've decided to keep her one more night. She's in a monitored bed, which means the nurse is in the room watching two children only, and Hope is never left alone. This gives us some peace of mind, knowing that seizures, vomitting or apnea (not breathing) will be dealt with promptly. I would write more, but it's taken all of my energy to do this.

Love to all...

Surgery Day

Here we are on our way to the hospital...
And here is Hope is her yellow hospital gown, waiting to go to the OR...

The surgery went just fine...And now, we see Hope in recovery room...

And then we moved to a monitored bed on CK3, where she still managed to have oodles of seizures and even had her crying episode right on time.

We did see some cute little smiles though. And because there was no room for us, we decided to come home tonight and sleep. We'll be right back in the morning to see you Hopey!

Thanks to everyone who sent well wishes and thoughts. Much appreciated.

Better Day

Check this out! We found a way to keep the soother in, without overstimulating her by holding her too much. Alex laughed rather hard, and Brodie just stared at her and asked, "what is that?". It actually worked rather well this evening. So far no screaming, but I'm not holding my breath. The nice little touque/neck warmer was made for Brodie by my friend Julie's Mom. Brodie doesn't remember wearing it.

Hope had a much better day today. We're still on schedule for tommorrow, but they bumped our surgery time up to 12:30pm. That works for us. She'll be assessed in the morning to see how her lungs sound, and if this is the best time for surgery.

Bad Day

It's 10p.m. and I would say that Hope had a very bad day. This afternoon she started having violent seizures that shook her whole body, followed by twitching, and then more seizures on and off. We gave her the Midazolam, which didn't help. She eventually calmed down to her normal amount of seizures, but looked so pale. Then she started her screaming/seizing episode around 7p.m. again. It's rather predictable, but surprising she started into it with the midazolam on board.

Even now, she's barely sleeping, we can see her eyes fluttering. I think she just has so many little spasms that keep waking her up.

I'm having ongoing issues with Neurology, trying to get an increase in the Midazolam. I spoke with the Palliative Care team today, and they are going to help me with this issue. I also spoke with the case coordinator, who is also going to speak with the doctor. I'm getting a lot of support from everyone, except Neurology.

Too much time on the phone today, when I could have been cuddling Hope. Hey, I should get one of those cute little ear pieces, so I can walk around with the phone tied to my head!

We're off to pre-admission clinic tommorrow, but I kind of doubt that they'll be able to do the surgery with her so sick. We'll see.

Bad evenings...Good Mornings.

Hope is still having her little episodes every evening (multiple seizures with crying/screaming in between). The increases in Midazolam and Clonazepam have been useless. But I'll worry about that later, right now we're getting ready for pre-admit clinic tommorrow and surgery on Thursday (for her feeding tube). I don't remember the last time she was able to take a bottle, and she tries to suck on the soother, but usually doesn't have much luck with that either. I just realized when I was trying to take this photo that I don't remember the last time I saw her big smiles either. But then again, my memory is very, very poor these days. I only know what's going on today...it works for me.

So the mornings are good and the evenings are not so great. Ashley still surprises us with lovely smiles, and moans when she wants to be cuddled. Brodie won't let me talk about him on the blog, so I won't say anything at all about patches or glasses!

Have a great day everyone!