Much better!

Ashley is definitely better!  Are you surprised?  Because I sure am.  This is certainly a wake up call for us.  It's time to get some funeral planning done.  When Ashley was six months old we started planning her funeral, and then she stabilized around 12 months old.  We haven't reviewed those plans since.  The Palliative Care team told us that they see this happen.  This little crisis could be called a 'dip' and she might have many more, or she might succomb during the next one, but it isn't unusual for a child to deteriorate and look gravely ill, and then bounce back.  We'll call it a 'practice run' because now that we know what it looks like, we can make a few preparations.  Not that it will be easy to support her through some more 'dips', but it helps to have an idea of what to expect.

The support we recieved through phone calls, visitors, comments and emails, was incredibly appreciated.  We didn't feel alone, and yet we had many peaceful moments with Ashley in between visitors/phone calls.  It was a good balance.

Ashley is a different girl now.  Since her illness, she is completely relaxed and peaceful.  She doesn't moan or cry.  She never postures or twists her body.  She has had no seizures!  She just lays there with her eyes moving around when she hears a noise, and sometimes she has a tiny little smile.  We have NEVER seen Ashley like this...hope it continues...

Ashley at 6 months old.

A bath!

Well, we're getting optimistic and giving Ashley a bath this morning.  She coughs and sputters with each turn and turns a little blue around the mouth, but then settles and returns to regular breathing.  Alex went to work today, we figured he might as well.  Ashley seems to be getting better.

We'll try some formula again today.  She's been tolerating water through her G-tube, throughout this time, but each time I have tried formula, she has started vomitting.  So, we'll dilute the formula and borrow Hopey's feeding pump for Ashley, and let the formula drip in slowly.

So, I do not think I will post again tommorrow, unless something happens.  I'll put another update on here in a couple days.  Thank you sooooo much for the prayers, the thoughts and the helpful, supportive comments.  Even when someone writes that they are thinking of us, it is meaningful.  Thank you.

Another day

Well, I think this is going to go on for weeks.  Please don't forget about us, this is really hard.  I remember when Ashley was an infant, even before we knew anything was wrong, and I constantly told myself that this child was teaching me patience.  She was so difficult to feed and I had to relax myself and wait till she was ready to lean in and latch on.  Well, the lesson in patience is ongoing.  Apparently, this is not something that I am very quick to learn.

We are in limbo!  Is she getting better?  Is she dying?  I have many moments of peace when I relax and realize that I can be thankful for the 'right now' of holding her and being at home during this uncertainty.  Wouldn't it be awful to be in the hospital?  I'm sure the many prayers for us, are helping us find these peaceful moments and just accept what 'is'!

We hadn't seen a wet diaper in days, and then she filled a diaper to overflowing last night.  Her breathing is regular and a good rate.  But her cough is not that strong and she's not moving anything when she does cough.  Her chest still sounds horrible, especially the right side.  And oddly, she is still very sleepy, completely limp and has had no seizures and no posturing.  This is NOT NORMAL for Ashley.  It's lovely to see her so peaceful though.

So, there it is.  I have no idea what is going on, and I just need to accept that!  I'm going for a walk, I need to get outside for a bit.

Awake

During the last four days, Ashley has been limp and lethargic, mostly sleeping and if her eyes opened it was a half lidded, glassy eyed look.  This morning her eyes are open and she seems awake, just like she would normally look, except she's still limp, she's not having any seizures and she's not posturing. 

Her chest still sounds horrible and she's not coughing anything up, but she looks so good.  I told Alex this morning that she's probably going to shock us all and get better.

The same

Ashley's day has been peaceful, sometimes breathing fast, and sometimes breathing slow, but still peaceful.  She opened her eyes once and looked very sad...one tear trickled from her eye and then she went back to sleep.  Very sweet but kind of sad.  She does not appear to be in any pain or distress at all, in fact I can hardly believe that she won't get better.  She appears to comfortable, as if she will wake up tommorrow morning and start moaning to be picked up.  I haven't had to give her any comfort meds so far, we've just been blessed to sit with her and hold her.

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.