Crazy Hair

The girls are doing great.  Check out Ashley's crazy hair!  I plopped her in her chair and that's how her hair fell (it's resting on her school backpack).  This is where I 'style' her hair in the morning.  She sits in the chair and I get to have fun with barretts and braids!  My sister will be glad I'm not experimenting on her anymore.  When we were kids I would braid Kyla's hair for hours (the longest time stint was 3 hours, after which she refused to let me get near her with a brush).

As you can see below, Hope is still in the crib.  She is a VERY long girl and we really need to figure out the next bed plan!  We're just not sure what the best plan is, since we can't fit two beds in that room.  The original plan (when we built the house) was that Hope would eventually take over Brodie's room and Brodie would move downstairs.  But now we have Mira to think of, and it appears that Brodie and Mira will share a room.  So Ashley and Hope need to continue sharing a room.  Hmmm, I'll keep thinking about it...



Mira took a bottle from Alex the other day...yippee!  Apparently she will only take a bottle if I am not in the house, and Alex is the only person she will take it from!

Mira's Baptism

Mira was baptized yesterday.

We were blessed by all the family and friends who came to celebrate with us (they made quite an effort, considering the Mass was at 9am!).  Mira was very excited that her Godmother, Miranda could be present for the event and sends 'hugs' to her Godfather, Derek, who is busy playing hockey.



Mira would also like to thank Great-Grandma Lil for loaning her the beautiful baptismal gown, which is over 90 years old.  Mira is part of the fourth generation to wear the gown (do I have that right?  G.G. wore it, then Grandma Allen, then Daddy, then Mira). 



We did change her clothes after a few photos, because she kept trying to eat the dress!  Not a good plan for a family heirloom!    Then we took about 20 pics of Mira and Teagan together.  Babies!  So cute!





RCC

As I mentioned in my last post, we were at RCC this week and we recieved the disc to show us the video that was made following our interview.  Now I have the link so that I can share it with you...Yeah!  If you click on the link that you see on the right hand side of this page (Ashley & Hope's Story), it will take you to the site where you can view the video clip.  You just have to click on the play button.  Also, I would encourage you to view two other stories on that site.  Garrett's story and Andrew's story are both available to view when you scroll through the video clips on that website.

I was very impressed, and I hope you are too.

Rehab Centre for Children

Yesterday we spent the day at Rehab Centre for Children.  It was a clinic day, which meant we were there from 9:45am till 3:00pm.  We fit in six appointments.  In the pic below, you can see Ashley in her new wheelchair.  This was the inital fitting, and because it still needs some work, we did not get to bring the chair home yet.  Hopefully, we'll get it in a couple weeks.

Since Alex is travelling again, I recruited my mom and Brodie to help me for the day.  Brodie was excited because he loves the pinball machine in the toy room at the centre (unfortunately it was out-of-order, but he had fun anyway).  There was no way I was going to be able to push three strollers and 2 standers.  Although I often contemplate how I could do it on my own.  Then I start having visions of creating some sort of wagon system, where I connect all the wheelchairs and pull with all my strength.  Then I recognize the truth of this situation and humbly accept the fact that I need help.

We had a great day at the Centre and all the kids did great.  Mira slept peacefully in her stroller and woke up for her feeding, after which Brodie was happy to hold her while Mom helped me.  Ashley slept most of the morning, and Hope smiled through everything.  I brought a lunch and snacks along, so we had a little picnic at noon.  My favorite appointment days happen at RCC because it is all very practical and helpful.  The atmosphere is pleasant, relaxed and it's easy to spend the day there.  The team approach is what I like in particular.  Everyone shares ideas and the best solutions are found this way.

Children's Rehabilitation Foundation is the fundraising arm of the Centre.  If you remember one of my postings in September showed us during the taping of an interview for the Foundation.  I was given a disc of the finished product and it is amazing.  I'll be sharing the link when I get it.  I can't wait to show you and encourage you to consider the Foundation when you decide where your donations will go this year.

Ashley has grown so much that she is having a new stander built for her.  Hope's stander is being adjusted for length as well.  The KidKart (which was donated by the Foundation), is now adjusted for Hope because she will use it now that Ashley is getting a new wheelchair.  Doesn't Hope look nice in her KidKart (above)?

 When we were at feeding clinic, it was decided that Hope is a little 'pudgy' around the middle and we will decrease her feeding a bit.  Isn't that surprising, considering all the vomitting she does?

Then we met with Dr. MacPherson to address orthopedic concerns.  Hope is great and needs nothing, but Ashley's spine is very twisted, and we find it hard to position her properly.  The plan is to make a special brace for her back, which will wrap around her rib cage and give her support.  This will involve a few more appointments.

By the way, thank you for the supportive comments following my last blog entry.  It is a very good thing to be able to share a little of the emotional side of this journey.  Seriousely, it was a very good thing for me, so I may let loose again in the future.  Watch out!

Better!

 Hope is better.  This may not surprise you, and it doesn't really surprise me either, but there is something surprising about the fact that she gets so very sick and then bounces back each time with no antibiotics.  This vomitting episode came so quickly after the last one, that we were caught by surprise.  Each of these episodes brings a heightened awareness of the fact that Hope and Ashley will not live very long.  Every time Hope begins vomitting and then the vomitt becomes bloody, we 'hold our breath' wondering if this will be it.  Is this the inevitable downhill slide. 

When I moved Hope to her bed one night, she stopped breathing and her lips turned blue, she gasped for breath a couple times during the 3 or 4 minutes her lips were blue, then settled and eventually started breathing regularly again.  It was totally random and who knows why she did that, but it didn't really surprise me either.  As I willed her to breath, I held her hand and stroked her head feeling completely helpless and vulnerable.  I prayed for her to have a peaceful death and if possible that we could be with her when she dies.  I prayed that whatever support our family would need, would be met because I don't know how to prepare for that day. 

Once she pinked up again, I got back to work and prayed that I would remember to make time to have a special moment with each girl more often because it is too easy to get busy and stay busy.  Then I carried on because Alex was gone with Brodie to hockey and I needed to get meds and feedings and diapers done before it was time to feed the baby. 

This may seem odd to some, but not to me.  Not when I've been faced with these moments for over five years.  This is my normal and I'm not sharing this to get sympathy, I'm actually finding that I process things better when I talk about them.  So, here I am...talking...to you!  Thanks for listening.

Hope is sick...Again!

Mira is our bright spot.  She's full of smiles and wonderful gurgles and coo's.

Below you can see Hope with an absolutely beautiful smile on her face.  She's actually having a seizure in this pic and that smile was frozen in place for quite a while.  She's on her second day of puking and she's still vomitting up a lot of dark brown bloody puke.  She's having a variety of seizures, some more intense than we've seen in the past.  The couch is her home until she recovers enough to be moved.

Ashley is having more calm moments, with some minor moaning that stops when we pick her up.  Her seizures have become very intense and some involve full body shaking which result in extreme exhaustion.  She's sleeping a lot more, and I'm not sure how this will work out for school.  She's supposed to go back to school tommorrow afternoon.

Brodie is active and happy.  Alex helped him build this snow fort in our backyard.  It's been well used, for sure!  The plan is to add a second story.  We might as well call it a snow house!  You can see Brodie and Savannah in front.