Little smiles

Hope woke up this afternoon and has been giving us some smiles as we cuddle her.  She's not throwing up today, and she's having some wet diapers.  We haven't gotten her feedings back to normal yet, so we'll keep working on that.

Oh Hopey!

Oh, Hopey...why can't you just be better?  Last night we had wonderful smiles and cuddles and even some 'coos' from Hope.  She was just wonderful to hold.  This morning we found a puddle of blood-tinged puke to clean up and Hope struggling with secretions.  She has barely woken up today, and she only had one wet diaper, but don't worry she's been breathing very peacefully for the rest of the day.  It seems like we're one step forward and a couple steps back these days.

Today I went to a funeral for Joel.  Joel is the 2 year old son of my friend, Karen, who's blog you can see in the sidebar.  Joel died on the day of Ashley's funeral.  Now, Karen and I have even more in common and we will be walking this journey together for years to come.  This isn't a sad statement, it's a statement of wonder!  How blessed am I, to have a friend who understands my unique journey, and who's journey I can understand in turn?  The timing of us meeting just a little while ago, speaks of God's hand at work.  See how your prayers for us have been heard?

A better day

We made it to church today.  I had to suction Hope on the way there, and on the way back.  She is still coughing up a lot of secretions, but she has not had a fever today.  Hope slept most of the afternoon, and then woke up to give us some very sweet smiles this evening.  Maybe she is getting better.

Tommorrow

Last night we were horrified when Hope started vomitting again.  She hasn't recovered from her last episode and I just can't imagine how she can go through it again right now.  But today, we were able to get her meds and water into her very, very slowly and she didn't throw up.  She didn't have a fever today (she did last night), and she slept most of the day. 

She has been very peaceful...maybe too peaceful.  Her skin is so pale and she doesn't wake up very much.  When she does open her eyes, she closes them soon after.  Her breathing seems shallow, but I am hyper-sensitive...so who knows if it is actually different than normal.  At least she isn't vomitting.

Tommorrow is Sunday.  We will try to go to church if Hope is able to travel.  Of course, this means we will be experiencing our first Sunday morning without Ashley.  Sunday Mass was the one thing we always did together.  The girls always came with us, unless they were very sick, or at respite.  Anyway, it just hit me that I only have to get three kids ready for church tommorrow. 

Instability

The funeral was beautiful and the support was overwhelming.  We both want to thank everyone for blessing us with meals, words of support, visits, hugs and attendance at Ashley's funeral.  We were glad that we chose some of Ashley's respite providers to be her pall bearers.  It was very fitting. 

Presently, we are finding ourselves focused on Hope.  She is just not getting better.  The day of the funeral, she didn't throw up because we decreased her feeding rate in half (we were worried that sitting up might be too much for her, so minimal amounts in her stomach would be better).  But during the funeral, her breathing was very laboured and irregular.  Yesterday, she perked up and we had some lovely smiles and wonderful cuddles. 

Today, we woke up to find that Hope had a very high fever.  The tylenol brought it down, but her breathing has been laboured and irregular at times.  For a few hours today, her lips were very pale and the veins around her mouth were very blue...just like Ashley before she died.  But now her lips are pink and she's breathing a bit better.

Dr. Harlos, from the Pediatric Palliative Care Team came by and listened to Hope's chest.  He made me feel better when he found that Hope's chest didn't sound as bad as Ashley's did, last week.  Hope is still having wet diapers too.  So, I'm hoping that we have a couple more weeks with her.

If you were to ask me how we are doing, I would be hesitant to say because we are still in a rather intense state of watching and waiting.  I doubt that we've processed anything at all, and it's hard to believe that Ashley is gone.  I just hope that we have a few more months with Hopey.

Ashley's Funeral

Ashley's funeral will be held on Wednesday, March 23rd at 11:00am.  It will take place at St. Timothy's RC Parish on 135 John Forsyth Rd., with a reception to follow.  In lieu of flowers, please go to the website for The Childrens Rehabilitation Foundation to donate, which is the fundraising arm for RCC.  See below...

http://www.rccf.ca/

Alex and I would like to thank everyone for the overwhelming support and genuine empathy that has come our way.  We hope that Ashley has touched your lives too. 

Our Angel is in Heaven

Ashley died peacefully, at home,  in our arms yesterday at 2:30pm.  Grandma and Grandpa Allen had just arrived as she took her last breath.  It was a blessing to have them present at the moment, and after when they were able to help with Mira.

Having Ashley at home while she was dying, gave us a chance to feel our emotions and listen to our instincts.  Yesterday morning I felt the need to give Ashley a sponge bath, even though she didn't really need it.  As I washed her body and rubbed her little hands with lotion, I had the thought that this could be the last time I would bath her.  She was still breathing fast, and nothing really changed but as I finished her bath, I felt a moment of 'panic'.  That's not really the right word, but it's close.  I just knew that I should call Alex home from work, and even if she was fine, he could still come home to support me.  Alex arrived home around noon, and was able to have a couple hours cuddling Ashley on the couch.  I gave him some time with her, and had a little rest.  I awoke after 30 minutes and felt refreshed (which I was surprised at), so I got up and went to Ashley.  I had just a little more time with her.  Alex opened the door to his parents, who had arrived, and then we sat down with Ashley and she took her last breath.  It was so incredibly beautiful.  She was quiet and peaceful, and breathing nice and even...and then she wasn't.  She just lay there, and you could almost feel her beautiful spirit drift up to heaven.

Mom & Dad Allen were able to go pick Brodie up from school.  We had some time with Brodie, and he is handling things as an 8 year old would.  He experiences some emotion and then takes a break to play wii, then comes back again.  He's doing well.  It will be an adjustment for all of us.  When it was time for Ashley's body to go to the funeral home, we asked Brodie if he wanted to say good-bye again.  I liked what he said..."Why Mom, she's already gone."  Yep, he was right.  She's already in heaven.

Today we will start planning the funeral.  Information will be posted here of course.

Working hard

Ashley is still working hard to breath.  She's breathing very fast, and still has a fever.  The tylenol helps sometimes.  I just keep giving it.  She does look peaceful, and she's not having any seizures.  We rarely see her awake.  If her eyes are open, they are often just half open and not very aware.  She is not having any pain, as far as I can see.

I have been so focused on Ashley, that I forgot to notice that Hope isn't getting better.  She started her vomitting episode 10 days ago, and she still isn't back to normal.  Usually she gets over it in 4-5 days, and then has a 'perky', energetic time afterward.  But I can't sit her up, or she will cough until she throws up.  So, I am keeping her on the couch too.  This morning I cleaned up a whole bunch of thick, green secretions from her mouth and the cloth under her face.  She's terribly sleepy and I was expecting that she would be back to smiling by now.  So, I guess she's sick too. 

We've definitely entered our 'Winter' season in this house.  It's a time of change, and it's although it is a little gloomy and grey, we are still blessed.  We are at home...together!  Blessed by friends and family who call, or send notes, or comment here on the blog.  Blessed by meals, and coffee treats and special visitors.  Most importantly, we are blessed by God's presence and the peace that envelopes our home.  We still smile and laugh and eat and pray!  We are well....thank you for caring.

January/2011

Death watch

When Ashley was a year old, we decided to stop waiting for her to die, and I remember a comment about us being on the 'death watch'.  It feels like we're back there again.  Unfortunately, it is not something I can control, and although it may sound like we 'cry wolf' a couple times... and then Ashley gets better, we are not over-reacting.  We're just living a very real, very tough situation.  My friend, Karen, sums this up very well in her recent post about 'life bumps'.  You can see the link to her blog on the sidebar titled Rainbows and Earthquakes.

Ashley is breathing at rates of 70 - 80 breaths/minute right now.  She has a fever that comes and goes (sometimes the tylenol helps but it doesn't seem to be helping this morning).  She did have a wet diaper this morning and she's not puking, although she's barely awake enough to even cough, much less vomitt.  She still looks peaceful, and she could get over this, but I really couldn't say for sure.

Limp

Don't you love my blog titles?  I am just not very creative right now.  Limp is the title because Ashley and Hope are just limp.  What a wierd word. 

Ashley had a wet diaper this morning.  She does this to keep me on my toes, I'm sure.  "See Mommy, I won't pee for 2 days just to make you wonder, and then I'll flood everywhere".  She's just lying here this morning, with limp arms and a slack mouth, drooling icky green stuff and her eyes are half open.  It's not the most encouraging picture...but she did pee...so that's something, I guess.

Hope sat up in her chair for a couple minutes yesterday and promptly started coughing and throwing up, so back to the couch she went. 

Brodie's done hockey for the season, so we don't have that fun distraction.  Mira has two teeth and is chewing on everything in sight.  She tries to get anything and everything into her mouth.  So cute.

Hmmm

Hmmm, I don't think Ashley is quite better.  She has had some breathing issues today and is not looking very good.  She also, hasn't had a wet diaper in 36 hours.

Hope puked a couple times today, but only because she's coughing so hard.

It's stay home, cancel appointments and manage necessities only for now.

Better?

It was a better day today.  I think both girls are on the mend.  We had a peaceful evening at least.  Ashley tolerated her meds and water today.

More of the same

Ashley just can't seem to stop her stomach from heaving.  We can't put anything in her stomach at all.  She's been dry heaving all day.  Hope is coughing up green/yellow stuff, but seems okay other than that.  We're a little tired.  Alex and I both have headaches...lovely!

Brodie and Mira are bright spots of course.  Mira is trying to sit up...

Ashley's sick now!!!

Unbelievable!  Ashley started vomitting tonight!!!  Her stomach is heaving so much that her puke has become blood tinged, just like Hope.  Seriousely??? 

I don't get it. 

Hope did have a wet diaper today, so I guess she's on the mend.  Not that it matters, we just move the suction machine over to Ashley's couch and keep on going.  Honestly, I'm a little tired of it all.

Coughing

This is just a little update, for those who are wondering.  Hope finished vomitting and started tolerating bits of water yesterday.  Today we've increased her water and she is tolerating all her meds.  She's started coughing up some green yucky stuff and she has not had a wet diaper since Wed.  I'll be expecting a wet one tonight or I'll be worried.

She looks good though.  Nice pink cheeks and a fairly strong, productive cough.

Brodie had his last hockey game today.  Mira is having a nice nap and Ashley is enjoying the couch.  It's a good day to relax.

Hope is sick

I took the girls to RCC yesterday for Ashley's wheelchair fitting, stander fitting, and an appointment to have her casted for the soft boston brace (a brace that will support her torso which is becoming very twisted).  I snapped this pic just before the vomitting began.  I was so pleased to have gotten to the Centre by 9am and the girls were all smiley and cute...so I got the camera out.  A little while later, our nice day turned sour when Hopey started vomitting yucky, blood-tinged puke everywhere. 

If it had to happen at an appointment, I'm glad it was an appointment at RCC because they were great.  Pukey clothes and blankets were washed and dried (yep, they have a wash machine and dryer), and they had some sheets to wrap Hope in while the clothes were in the wash.  In the meantime, we continued with Ashley's appointments.  You can see her below, getting covered in plaster to make the mold for her brace...

All that stuff came off eventually and although I washed her fairly well before I dressed her, she still needed a bath when we got home.  I was a little worried about driving home with no one to sit with Hope.  If she started vomitting while in the carseat, I was pretty sure she would aspirate (which would mean getting stuff in the lungs).  She didn't puke.  She waited until we got home and then started up again. 

So, there we are.  It's just one crisis after another these days.  I'm glad we enjoyed the  previous week of smiles, cuddles and peace to the fullest.  Today Alex got home from another work trip, so I'm glad to have him home tonight so I don't have to sit with Hope alone.





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!