Friday, April 29, 2011

Not so bad

I think Hope is already doing better.  This episode was not so bad.  She still had a lot of dry heaving, but not as much vomitting.  She's still stiff and having little 'sweats' occasionally, but she's smiling and alert.  So, I'll go with that.  She's smiling, good enough.

Mira and Brodie are doing great.  I'm exhausted.

Wednesday, April 27, 2011


Well, that lasted long!  We found Hope in a puddle of puke this morning, but the rest of the day wasn't as bad as usual.  She had some moments of stomach heaving but no more puking.  Maybe she won't be as bad this time.  The other problem is that she's having these little 'sweats' where we find her with beads of sweat on her face, and we remove blankets and she cools down.  But then she's shivering, so we give her back the light blanket...and then she starts sweating again.  I'm not too sure what's up...we'll see.

Here's a pic from last week, when Hope was doing so well.  She definitely has more visual ability than Ashley had, because you can see her smiling at Mira, when we place her strategically!

Tuesday, April 26, 2011

A Happy Easter Weekend

We had a very good Easter weekend.  It was great to leave the city and go visit family at both farms.  Mira and Teagan had some fun when we're at Kyla's farm...chewing on things of course.  Brodie had fun at both farms because he had cousins to play outside with.

Hope did very well.  She had a lot of smiles for us and even seemed to enjoy the travelling.  She only had one little puke on the way back into the city (just to keep us on our toes)!

Hope is still rather stiff and kind of jerky and twitchy.  Her feet have twisted to the side now probably because her legs are stiffened straight out most of the time.  We're still making increases with the diazepam, so we'll see if it helps eventually.  In the meantime, she is very happy.

Friday, April 22, 2011

A good week

Hope has had a good week.  She's been smiling and sweet and full of coo's.  The big change for her is that she is extremely stiff.  It's hard to bend her body to get her in the carseat.  We've started Diazepam, but we're taking it slowly and not making increases very fast.  So, it will take a while to get good results, but this way we won't overshoot and make her too sleepy.

Hope has always been floppy.  It was Ashley who needed increases in the Diazepam all the time.  This is such a big difference for Hope, and we're all noticing it.  We're trying to do her exercises and stretches 2-3 times per day and give her more position changes.  We've been massaging her legs too, and although she loves the attention, it hasn't helped.

Have a wonderful Easter weekend.

Monday, April 18, 2011


Today it has been one month since Ashley died.  What a strange have a child that is not here.  I'm not sure how I'm supposed to feel and sometimes I wonder if maybe I'm not very good at 'feeling', because I actually don't cry very much and I don't feel horrible. 

It's hard to believe that she's actually died and gone to heaven.  Perhaps I have a really strong protective mechanism that stops me from thinking about it.  Or perhaps I grieved for so long, that the cup of grieving has very little left in it.  Does that mean I didn't love her enough while she was here?  But I know that I loved her, and I put a lot of effort into caring for her in the best way I knew how.  Am I feeling okay, because I accepted her death a long time ago?  It wasn't a shock to us, like it could be in another situation.  Perhaps, it is the Grace of God.  It has nothing to do with my strength and everything to do with His!

I've had an ongoing thought that has helped me understand myself and this process.  This journey reminds me of climbing a mountain (although I have never climbed a mountain).  As we climb this mountain we have experienced some setbacks, some struggles, lack of energy and sometimes it feel like we won't make it, but we've persevered.  With Ashley's death, I feel that we've reached the summit.  We've carried her as far as we could and now we can let God take her the rest of the way.  It feels like a victory and we can breath a sigh of relief, knowing that we did not fall down the side of the mountain, or leave our children behind, or even leave each other as we struggled.  God is smiling down on us, as we feel the cool crisp air, and become aware that our arms are now holding three children...instead of four.  The top of that mountain is a beautiful place.

Now, I was thinking that I would get a little rest as we carefully moved down the mountain, but I was surprised when I realized that we are not done.  We may have reached the summit of one mountain, but it was hiding the next mountain and we will have to continue our journey with Hope.  Thankfully, this mountain has a more defined path, and we can use the lessons we learned as we climbed before.  It is not a bad thing to continue on this journey and our steps are more sure now because we have come closer to God.

I was looking for photos of Ashley and wondering what I could share on this day of remembering.  I can't believe that I have no new photos to share, and yet, how could I?  She isn't here.  Well, this is what I have to realize isn't it?!  So, I returned to the 2009 photos, and went to April, where I could find Ashley in her pretty Easter dress.  I remember thinking how cute that dress would look on a little girl who could walk, and now I'm crying...because of course, Ashley is walking now!

Friday, April 15, 2011


Yep, we took a little trip to Emerg today.  While I was out for a bit of respite, my helper, Ashley J., called to tell me that we had a problem.  Hope's G-tube (feeding tube) had fallen out, and yes, Ashley had tried to put a new one in but it wouldn't go in.  So, I rushed home, thinking that I would have 'no mercy' and just shove that thing in (because I had no intention of letting Hope have surgery to get another one, and I just don't go to Emerg if I can help it).  Well, my attempts made no difference.  Hope's stoma had swelled instantly and closed the hole to a very small little opening.  While I was on my way home, I had asked Ashley to find the bag of nasogastric tubes that I still had from years ago.  She found them and inserted one into the hole so that it wouldn't close any further.

So, we packed up Mira and Hope, brought all the meds and tubes and suction machine, and started off for Childrens Emerg (anticipating a long stay).  I was very impressed with our nurse.  She was able to dilate the hole for us, and get the new tube in with very little trouble, and we didn't even have to see a doctor.  She even gave us supplies so that I could do this at home, if it ever happens again.  Back home we went, and we even beat Brodie's bus home.  What a fun little adventure!  Of course, it helped that Ashley J. was able to stay longer and help me with the packing, travelling and unpacking.

Now, Hope is back on her couch, looking fairly comfortable.  I did give her some tylenol because I'm sure all that poking was not fun for her.

We did have a little moment when we checked in at Emerg and I hadn't mentioned that Hope is palliative care.  They check vital signs at the triage desk.  Hope's oxygen saturation was only 91% and her heart rate was 142.  I was sitting there looking at the numbers and thinking, "Oh, that's interesting...I always wondered how her sats were...".   Then I noticed the triage nurse watching the numbers with a look of concern, and then I remembered to mention that Hope is palliative care and she shouldn't worry about the numbers.  She nodded in understanding and then we were promptly moved into a room, where our nurse showed up fairly quickly.  I wonder if they thought they should keep us moving, just in case (Te he... they don't know how resilient Hope is).

Wednesday, April 13, 2011


Hopey is having some smiles today.  Actually, she is having lots of smiles and happy little coo's.  She has not thrown up any food or meds, and she has had a really wet diaper.  Yay!  She's looking good...hopefully better.

Mira has two teeth right now, but is still chewing on everything in sight and drooling like a champion!  We tried to get her to chew on the soother one day, but she didn't like it much...

Tuesday, April 12, 2011

A little step back

Hope's not quite better.  She vomitted up every bit of her meds and water this morning.  She had one wet diaper, but nothing since.  Now, she's sleeping and she's kept her afternoon meds down.  I'm just starting to give her evening meds.  We'll see how this goes.

Monday, April 11, 2011

Hoping for Hope

Hope is following her usual pattern and looking better today.  I gave her morning meds very, very slowly and then set up the pump to deliver a steady (but slow) drip of water into her stomach.  She is sooo dehydrated right now.  Now, we wait for a wet diaper and then I'll breath easily again.

I told Alex yesterday, that Hope seems smaller.  It looks to me, like she has shrunk (he laughed at me).  Her cute little head seems smaller, her rib cage is sunken in and her limbs are loosing that nice plump look.  Of course, that makes sense with all that she's been through since Christmas.  I don't like this 'fading away', and I'm still hoping that I can get her to tolerate more food so that I can 'plump' her up again.  Hoping for Hope, that's what I'm doing.  Hoping that I'm wrong about this downhill spiral.

It's so nice and quiet in the house today.  I have had my cuddles with Hope and Mira.  Brodie is off to school with his 'vehicle' that he made for his science project.  Music is playing and I have time to think and pray.  It is a good day.

Mira is starting to sit up.  Her favorite thing to do is slap at things.  She is not a gentle girl.  She's got some power to her.  I can see already that we'll have fun getting to know her as her personality comes out.  Mira had some help learning to sit, from her cousin Teagan who is a very polite and smiley little role model...

Sunday, April 10, 2011

A good week until...

We had a GREAT week.  Hope was smiling, she tolerated her full volume of formula and she enjoyed all her daily activities.  Friday was Brodie's chapel at school and Hope was able to come with me for that too.  Our respite worker, Ashley J. was along to help...thankfully.  Then Hope had a little 'puke' on Friday night...and I tried to ignore it.  That didn't really happen...right?  Saturday she seemed fine, so we continued with her normal routine, until 5pm when she started puking up buckets of formula which was not digested at all.  Her stomach is not working again!  Luckily, we always have her situated for potential puking (as you can see in the photo above), so we only had a little mess.

Today Hope is looking pretty bad.  Her eyes are puffy, with purple bags underneith from all the heaving.  She's seizing constantly from lack of seizure meds, and she's still vomitting up some blood-tinged emesis.  Yep, that's depressing.  It doesn't matter how many times we see this, it is still awful.

I know it's taken me a while to post, and I'm sorry that you might have been wondering how Hope is.  Thank you so much, for caring enough to wonder about us.  I was going a little crazy this week.  I even had a few moments of panic when the workload felt like too much and I messed up a couple appointments.  I started wondering if this is what grief does to a person.  I wondered if maybe my brain was becoming resistant to the constant pressure and it wasn't going to work anymore.

After much consideration and a lot of venting, I realized what the actual problem is.  I can't handle any external pressure!  I CAN take care of my kids and even my house (if I want to), but I can't take care of anyone else (no coffee dates, no showers, no visiting, no parties, no planning ahead).  And of course, no one expects me too!  We may be feeling 'okay', as I told you but we still need to take time to walk this road of grieving and deal with the moments that come.  So, as of now, I am letting everyone know that I am taking it one day at a time ( because letting people know this, makes me feel better about saying 'no').  I need to feel what each day brings.  If I decide on a particular day that I feel like a visit, then I may say 'yes' to a friend, but I can't plan ahead and have that pressure to show up and ignore what I really need. 

The days when I need to be home alone with my children are coming more often now, and I think it's because Hope is so unstable.  I don't feel like we have a lot of time left with her, and I know you'll understand that.  I'm not going to guess at a time-line, but I will go with my instincts which tell me to concentrate on my family (and even myself) right now. 

Sunday, April 3, 2011

Yeah, Hopey!

Yeah, are finally looking a lot better.  Hope was able to enjoy cuddles and sitting up in her KidKart yesterday, for the first time in weeks.  It has taken her 3 1/2 weeks to recover from the latest vomitting episode and I am so glad she didn't follow Ashley's lead!  It has definitely been a sobering thought, that we might lose both girls in such a short time.  We've been slowly moving out some of Ashley's stuff, which hasn't been as bad as you might imagine, but it would be horrible if we were giving up everything for both girls. 

It might be helpful for people to know that we really are OKAY.  Yes, losing a child is a very hard thing, and we will be dealing with this loss for years.  But we have also been grieving in small doses, for six years, which gave us time to love Ashley and accept her limited time with us.  Nothing was taken for granted and each year was cherished.  So, right now I will tell you that we are feeling fine...but I will reserve the right to change that sentiment in the future.   I just have no idea how I will feel in the months to come.  So, if I start crying for some reason...months or years down the road...I'll trust that you will remember that grieving is not predictable.  Also, it's okay that you may not know what to say to us, because we don't know what to say back!  A hug is always safe.

Now, back to the normal stuff.  We celebrated the beautiful weather yesterday by hosting some of the neighbourhood kids.  You can see Brodie in his Calgary Flames jersey below.  Mira was mesmerized by the hockey game in our driveway!

This morning we went to church and Hope slept through the whole service, but she looked cute anyway!  When we got home, we got her into position for some tummy time and Brodie promptly scooted in to cuddle with her.  He's such a great kid.

Thank you SO MUCH, to those who sent food (but we don't need anymore).  I had no idea how much work and decision making was involved with funeral planning.  The food that came after Ashley died was an incredible help and more than that, it was such a treat.  It was all so, so tasty and I definitely think food is a comfort.  I had no time or energy for meal planning or prep, so it may have been a KD week otherwise.

Just one more 'Thank You'.  We have recieved many e-card notices when donations were made to RCC in Ashley's name and this is appreciated and applauded.  Thank you so much!