Breathing fast

This morning, Ashley is back to breathing fast with the occasional little pause and sounding very congested.  She managed to cough up a bit of green stuff last night but not much.  Thankfully, she still looks peaceful. 

Another day to hold her.

No change

Not much of a change for Ashley.  She has been limp and lethargic all day, she barely opens her eyes.  No seizures, no coughing...just lying there with a glazed look.  She was breathing fast (rates of 70 - 80) all day and now her breathing has slowed down a bit.  Not sure if that's a good thing.  She really needs to cough to get that stuff out of her lungs.  The slowed breathing may indicate that she's getting tired.  We'll see.

We were so blessed to have phone calls and visitors today.  I didn't feel alone at all.  Thank you so much for the prayers and the thoughts that come through comments, email and Facebook.  It really is valuable to us.  Alex is so happy to be home from work and able to just stay home for the weekend to be with Ashley.

Not better

Ashley is not looking any better this morning.  Her eyes are closed and she doesn't look distressed.   She still very floppy and doesn't open her eyes when I move her around.  She's breathing very, very fast and her chest is very congested.  I wiped away some thick green secretions this morning, so she did manage to cough up a little bit of yucky chest stuff, but she needs to do a lot more than that if she's going to get over this.

Birthday

It is Ashley's sixth birthday today.  Six years ago we welcomed her into our family, excited to have a little girl to join Brodie who was 2 years old at the time.

Today, Ashley is pretty sick.  Her breathing is fast and laboured.  Her chest doesn't sound too good and she's got a bit of a fever.  We've tried to cuddle her today, but she's more comfortable when she's lying down. 

Now Ashley is sick...

This photo was taken last week, when Ashley was doing better.  Right now, she is sick.  She started puking at school yesterday (what is it with all the puke???).  She had some bad seizures, puked some more, had another bad seizure and turned grey and mottled looking.  We got her home, and she did it all again.  Then she went to sleep, was very limp and basically unresponsive.  Then her breathing deteriorated till she was only breathing at rates of 6-8 breaths per minute.  Of course, I was wondering if she would make it through the night at this point.

Well, she did make it to morning and even looked a lot better this morning.  She woke up a bit and was breathing better.  Now, she's sleeping again and working hard to breath.  I'm not sure where this is headed, but I do find it hard to believe she might die.  Especially because my girls often have these 'dips' and then perk up again.  So....we wait...

Monthly vomitt episode!

Yep, Hopey is sick again.  She's just recovering from her monthly vomitting episode.  She started on Sunday, and today is keeping water and meds down.  In the next couple days, she should be back to her normal self, but today she's fairly unresponsive.

Ashley just got on the bus to go to school.  It's so cute to hear the kids when the wheelchair lift is going up into the bus..."Ashley!  Ashley!".  Kids are great.

Alex is gone again this week, so we're having fun all by ourselves.  We're getting used to it, this is the third week in a row.  I'm starting to REALLY appreciate the moments when I get out of the house.  Luckily I have a lot to keep me busy, so I'm never bored!  I'm feeling especially bouncy today, because my wonderful respite worker was here this morning till 10am (I still find it amazing that she comes to help me before she goes to class).  I was able to go for a walk, finish my 20 minutes of stretching, get to the chiropractor (he's the only reason my neck and shoulders don't scream in pain all day) and get a coffee from Starbucks. 

After all that, I had time for cuddles with each of my girls and that's the best part of all.  Mira kept trying to grab Hopey's nose.  To cute!

Hugs to Alex who isn't feeling well today.  Hopefully this pic will brighten his day.

A friend...

Everything is fine here.  I know it's been a while, but I've just been busy with normal stuff.  Alex has been travelling a lot and my respite has diminished because two of my workers moved on to full time jobs.  So, I haven't had time to post anything.

I'm excited to tell you that I've met a special friend.  She has a child who is simlilar to my girls (different disorder though) and knows what it is like to love a child who is living with a fatal illness.  I don't have the words to explain how important it is to share an experience (and the feelings that go with it) and have another person identify with you and relate to you, because they have encountered similar situations.  But I'm sure that you can understand to a certain extent.  As new mothers, we find playgroups to meet other new moms.  As an engaged couple, we talk to other couples and ask all about their wedding experience.  Through every stage of life, we try to connect with people who are living through something that we are experiencing.  It's exciting and re-affirming and supportive.

In the past five years,  I have searched for and read any books that spoke of someones experience with their disabled/dying child.  I have checked out blogs and searched google.  I have not found anyone with a living child who has the same diagnosis as my daughters.  I have learned to rely on God to understand my unique joy and sufferings because he is the only one who truly understands.  Now I feel so blessed to have someone "with skin on" to share with.

Her name is Karen and she has a blog also, which is how we found each other.  I would encourage you to check out her blog named Rainbows & Earthquakes (there is a link at the right hand side).  Her recent post about clothes is so accurate and I echo her sentiment.  So, when you read it, you can just imagine that I am saying the same thing.