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!