Normal?

I guess we're back to normal, almost.  Ashley is still sleeping a lot and I haven't witnessed any seizures, but I like this new normal.  Ashley started moaning, loudly, today for the first time.  So I picked her up and she promptly stopped moaning, and started smiling!  Well, isn't that nice.  She's using her moaning for a good reason, I like that.  She had a very good day.  We're still going slowly with the feedings but we're getting back to regular feedings soon I hope.

Hope, Mira and Brodie are doing well.  We were excited to have a 'bumbo chair' lent to us for Mira, which allows her to sit up and watch Brodie or myself while I'm working with the girls.  It's great.

Back to school

I finally found a moment to update the blog.  We got adventurous and took the girls out to one of Brodie's hockey games on the weekend.  As you can see below, my two wonderful respite workers, were able to help me.  It was fun and the girls did great.

Ashley went back to school yesterday, and did fairly well.  She's still not having any noteworthy seizures, but she is getting a little more stiffness in her limbs.  We have to use some pressure to bend her arms and legs, not quite as bad as before.  Unfortunately, she is still having trouble with some vomitting.  We think she starts coughing and that brings on the puke, so we're using Hope's pump to deliver formula very slowly, attempting to minimize the amount in her stomach at any time.  Yesterday, we ran the pump too fast and she was puking again, which isn't fun because she turns a little blue and really struggles to breath.  So, I'll adjust the rate again.  She gets home from school in a few minutes and we'll start the pump at a slower rate.  I'm not sending any food to school, as it would be best if she's not throwing up at school!

Brodie, Hope and Mira are doing very well.  Mira loves bouncing in her exersaucer and really loves her jolly jumper!



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.