First haircut

Hopey's fourth birthday is just around the corner, so it felt like the right time to cut her hair for the first time!  Yep, I have never cut her beautiful curls...

And yes, it was a little sad to cut them off.  But also a little exciting because it's a fun thing to do with my little girl...

She sat so nicely and didn't cough at all.

I hope her hair stays curly...

Now I feel like getting out the hair dryer and styling her hair, but she's gettting sleepy...



There ya go...off to sleep as soon as I get you comfy on the couch.  Yay, we still have beautiful curls to play with!

Appointment Day

We packed up and went to Children's Hospital today for a Neurology appointment.  It was helpful that our Palliative Care team was able to join us for the apppointment.  The team approach is very effective and I feel less pressure this way.  Alex and I really wanted something to help Hope on her bad days, when the seizures continue for hours.  The plan is to give an extra dose of Phenobarb when it's a bad day (basically give her a phenobarb load), and see if it helps.  We really don't want to increase her daily meds because she often has good days, and we don't want to lose her awareness on the good days.  It's okay to make her sleepy on the bad days though.  Comfort, right?  Right!

Hope had some good days on the weekend.  We were able to bring her outside again...

Trying to crawl

Hope did not continue to puke after that one post-zoo vomitt.  Phew!  She's doing fairly well actually.  She's still coughing a lot and having seizures, but I'm able to get some cuddles and take her outside on the deck. 

During one of our outside evenings, Mira was inching herself back, as she tried to figure out how to crawl...

Then she decided she'd had enough...

That's just how I feel too somedays!

The Zoo

Brodie's class went to the Zoo today, and I've been sooooo wanting to join them.  So, I did.  Hope slept the whole time in her KidKart and Mira was great, just sitting back watching the kids.  I think Mira enjoyed the energy from the kids quite a bit.  The cloudy day was perfect for the zoo, and I'm glad it didn't rain.  When we got home, I carried Mira to bed and then went to get Hope.  I had just layed Hope down on her bed when she started vomitting (rather good timing, I thought).  Then she went to sleep and hasn't woken up since.  Maybe she won't puke again.  Maybe the little outing was too much for her.  Maybe I'm just glad we got to do something different with Hope and Mira.  Brodie was very excited to have his sisters there.

Now Hopey....please, don't be sick... I'll feel awful for taking you out!!!

Lovely evenings...

We have had some very nice evenings in between the rainy ones.  Hope is still doing well, and really enjoying her evening cuddles.  She still doesn't do well when I sit her up in the KidKart but she does smile a lot when she's lying down, and we talk to her.  During the day, she is usually having a lot of seizures and then falling asleep, so the evenings are best for her.

This is our first summer to enjoy some nice green grass.  I'm so glad we finally got some landscaping done.  Alex has been working hard this spring.



And Brodie too!  He wanted to show you his garden...



Bumpy ride

Wow, this is a bumpy ride that we're on.  Hope had a great day today.  She had 4 wet diapers.  Her breathing was much, much better and her lips were not blue.  I took her outside for evening cuddle time and she did great. 

We're experiencing the 'dips' that come when a child has a fatal illness.  Perhaps you remember a while ago when I talked about these 'dips', before Ashley died.  Palliative Care informed us that we may see numerous 'dips' where Hope is gravely ill, and then she'll bounce back because she's a child and still has quite a bit of reserve.  One of these 'dips' will be the end (the reserve will be gone), but we might not know which one, and I'm trying hard not to obsess about predicting the end. 

No predicting or guessing...just loving and holding and family time.

Weekend vacation

We had a nice weekend vacation, right here in Winnipeg.  Since we had two weddings to attend at the same hotel, we decided to book a room and have some fun.  Ashley, our respite worker, was able to stay at the house with Hope.

Brodie and Mira were both very excited about the pool.  Mira went crazy with the splashing.  Remember how much she likes to slap at things?  Well, she likes to splash even more...

Then we got ready for the wedding... 

We were at the church early because Alex had a pre-ceremony job at the church.  Brodie did a great job entertaining Mira...

It was so good to have some fun away from home, play a bit, enjoy some good visits with friends and family, and have a break from meal planning/preparation.  Unfortunately, Hope did not do so well.  She has been having fevers on and off.  She has had only one, hardly wet, diaper per day over the last three days.  Today we cancelled plans and sat with her.  I watched her fingers turn blue and her breathing become more and more laboured.  Then I took her outside for some cuddles, and by the time I brought her back inside, she was looking better.  In fact, right now she has perked up, is looking around and making some little cute noises.  Her color has returned to pink.  She's still coughing a lot. 

We'll see what tommorrow brings.

Getting outside

Getting outside is always a good thing, especially getting out as a family.  I know others might not understand why I create work for myself by taking Hope with us for outings, but it's important.  She's important and she is part of our family and she is worth the effort. 

When you meet someone like Hope, who doesn't appear to have very much awareness of her environment, you can remember this:  Only she and God know the depth of her awareness.  Therefore, we should always offer a 'hello', or perhaps a little 'hand-shake'.  When we meet someone with a baby, we instinctively smile at that baby and don't necessarily expect them to respond positively to us.  Hope is the same.  She's a baby in a big girl's body.  She likes it when her hand is held, and she might like it when we smile at her.  We just don't know, and that's okay.  That doesn't meen I'll be offended if you forget to smile at her.  It's just a hint for those who may feel uncomfortable and unsure of how to approach a severly handicapped child.

Wet diaper!

Yey!  Hope had a couple wet diapers today.  She's coughing up some yellow stuff and keeping her formula and meds down.  It's looking good right now.

Soon she'll be able to join us on the floor for some fun.  Last weekend, my sister and her family joined us for a day.  The kids had a great time and Hope enjoyed watching them...

Sleeping

Today Hopey had some very intense seizures back to back, after which she fell asleep.  She has slept all day, and is still sleeping now.  We've been giving her water all day, in addition to her meds and everything has stayed down, probably because she's in such a deep sleep.

This evening, Brodie and I decided to introduce Mira to ice cream.  Check out the fun...

The ice cream was one of those expensive Klondike bars from the ice cream truck.  Brodie had heard the music of the truck and asked to spend his money.  When he came back he had bought something for himself and for me too.  How thoughtful!

As expected

Hope is progressing as expected.  She was vomitting steadily till about 1pm.  Around 2:30pm I decided I would try one med because she had a lull in the vomitting and I really hate to see her seizures escalating.  Very slowly, one millilitre at a time, I gave one medication.  She kept it down.  At 3pm, I tried the second seizure med, which took me about 30 minutes to give (because I give it very slowly, kind of 'sneaking' it into her tummy).  At 4pm I thought her stomach was doing fairly well, but at 4:30pm she vomitted some yucky stuff that was full of old blood.  So, I waited some more.  This evening she only had a little puke.  Therefore, I am going to assume that she kept most of her evening meds down (although it is only 9:20pm and I'm sure she could still prove me wrong).  If she does well tonight, I'll start water in the morning.  We also use a few non-stomach meds to help with the vomitting.  Olanzepine wafers which dissolve in the mouth and should be absorbed (if she would stop puking and drooling and spitting), and a Scopolamine patch which is commonly used for motion sickness.  I don't actually think either of them help, but it's nice to try something.

These episodes follow a similar progression each time, and the main concern is that her kidneys will tolerate the dehydration involved and that she won't aspirate and get pneumonia.  Actually, the main concern is her comfort, and I am so glad that she still appears content and relaxed (in between seizures and vomitting of course).  I'm praying that she'll sleep tonight.

Vomitt

Yep, I knew I shouldn't have posted that blog yesterday.  See what happens when I say we're doing well?  Hope proves me wrong.  She started vomitting around 10:30 this morning, and she's still vomitting this evening.  Of course, the seizures are getting worse and she hasn't kept anything down.  Unfortunately, Alex is away on a work trip right now, but he'll be home soon.