wanting sleep...

Mira is doing a great job eating.  In fact, she's doing such a great job eating that she hardly sleeps.  I get pretty excited if I get to sleep for a whole hour at night!  I shouldn't complain, because Ashley and Hope both slept so much that we had to run ice cubes up and down their legs to wake them up and keep them awake to eat!  She seems to be doing so well, but I still have my reservations and I've noticed some very small little things that keep me wondering...  Hopefully the test results will come in soon.

Hope is back to her normal self with multiple seizures and only able to sit up for short periods due to the secretions and her inability to keep her chest clear.  Ashley is hardly ever happy and we spoke with the Palliative Care Team today about her.  We're going to try another new med.  Every time we increase a med or add another one, she has a good couple weeks and then develops a tolerance to the med.  Then she's back to her 'miserable' self, which is really hard to see.

I'm excited to share these pics from when my sister and her little girl, Teagan, came to visit.  Teagan is 2months old and it was fun to get a photo of the cousins together...

New Baby!!!

We are so excited to tell you that we have brought home our new baby girl!

Mira Zoe Allen was born after 13 hours of labour and no intervention.  For the first time ever, I didn't need drugs to get the labour going, and although I frequently asked for an epidural, it never happened because the doctor was very busy.  So, she arrived in a very healthy state, crying right away and demanding to eat!  She arrived at 10:30am on September 24th, and weighed in at 8lbs, 10oz and 21 inches in length.

We stayed in hospital until we had a urine sample from Mira to have her tested for ASLD.  The staff were fantastic and everything went very smoothly.  Now, we'll wait 7-10 days for results to see if she has the same genetic condition as Ashley and Hope.

Brodie is just LOVING his new little sister, and is frequently found cuddling, kissing and playing with her.  He says he doesn't mind at all that she isn't a boy!

We chose the name Mira because God blessed us with this miracle and the name Zoe means life.  She is our little miracle of life, and no matter what comes, we are so happy to have her and care for her.

Nothing yet...

The girls came home safely yesterday and I was so happy to have them here to snuggle and hold.  They were very calm and happy, obviousely well taken care of during their time away.  This afternoon, Ashley will return to school and she's having a great morning, so hopefully it goes well.

No baby action yet!

Out of home respite

Hope is still doing fantastic, with a lot of coo's and smiles.  Ashley had better days at school on Wednesday and Thursday.  On Friday, I took the girls to their 'sleep-over'.  It's our weekend to have 'Out of home respite' and we're taking the time to sleep in and organize a few areas of the house. 

No baby action yet.

Ashley in school

Ashley had a MUCH better day today, probably because she slept better last night.  You can see her above, waiting for the bus.

She had a lot more smiles today at school and even sat at the table with the other kids to color.  Obviousely, I don't care if she creates anything, I'm just thrilled to see her with the other kids.  Hope came with me again today (to Ashley's school) and was amazingly vocal and full of excitement.  She REALLY, REALLY likes Kindergarten, so we'll have to go visit Ashley at school every now and then.

After school, Brodie read his library book to the girls.  He's enjoying school too!

Ashley's First Day of School

Ashley had her first day of school yesterday.  She was picked up by the bus, right in front of our house.

She certainly didn't mind the bus ride...

 Hope and I met her at school.  She needed to take the bus because I wasn't going to be able to push her in the wheelchair and Hope in the stroller at the same time.  Ashley's EA met her at school and brought her in to meet her fellow classmates.  Then Ashley started crying, and crying, and crying!  She was miserable most of the afternoon, and I spent the whole time explaining different techniques to try and calm her (which didn't work).  It was rather stressful, and I think some of the other little girls wanted to cry, right along with her.  Not a great first impression!  I am going to school with Ashley each afternoon this week, until the staff is comfortable with her seizures and posturing...and crying apparently. 

Hope will come to school too, and unlike Ashley, she loves it.  She smiled and coo'd the whole time.  After all this activity, I'm sure this baby will be wanting to join in the fun too! 

I left Ashley's school early, so that I would be home to meet Brodie who gets off the bus at 3:40pm.  He was excited to beat Ashley home, so that he could see her get off the bus at 4pm.  He gave her lots of hugs and then read her a story on the front step (during which, she cried some more!).  My best guess is that she's tired and wants to sleep, but the seizures are keeping her awake.  She didn't sleep much last night either, and has been horribly uncomfortable all morning, so I'm not anticipating a good afternoon at school.  Oh well, it will give them an accurate picture of what she's like on a bad day.

Appointments and School

What a great day we had yesterday.  You should see Hope!  She's been amazingly alert, with smiles and coo's and even swallowing her secretions so she can sit up in the KidKart.

We had our OT and PT appointments for the girls yesterday (Occupational Therapy and Physio Therapy), and I'm sure this is the first appointment (in a LONG time) where Hope has been anywhere close to alert...

I am so encouraged to see her looking so good and I really hope this continues.  Ashley did well too.  Heather and Marlies were happy to see Ashley looking so good in her Convaid Stroller and we've decided that she'll use that stroller to go to school.  Officially, it was Ashley's last day under the care of Heather (PT) and Marlies (OT) because today Ashley will switch over to the school team of therapists. 

As you can see below, Ashley gave her therapists some nice smiles to say 'good-bye'...

Today at 1pm we will take Ashley to her school to meet her EA (educational assistant) and the rest of the team at the school.  Her first day of school will be on Monday.

Brodie left this morning for his first day of Grade 2.  He was pretty excited, although not too thrilled that we're back to 'school-year rules' of TV only on the weekends.  So much happening, I love it!

Filming...

The film crew came yesterday to interview us and take some footage of the girls and their lives.  It will be used to promote Rehab Centre For Children and help people who donate to understand the kids they are helping.  Ashley was crying right up until the interview and then settled...Yippee!  She actually sat nicely in my lap for the whole interview, although she didn't smile.  Below you can see Ashley in her new stroller.  It's called a Convaid Cruiser, and it fits much better than the other stroller I use when I take her out.  She's growing so tall!

Hope slept through the ENTIRE morning.  She slept through her bath, through getting her hair done, through all the juggling around and manoevering into her stander.  Hope fits into Ashley's kidkart VERY well (this is the special wheelchair that was funded by donations to Rehab Centre for Children), and I think I'll let Hope keep using it.

In fact, she slept the entire day, which is not unusual after she has been sick.  She finally woke up around 7pm, and then she was all smiles and coos.  Of course, we cuddled her the whole evening until we went to bed, and I'm sure she was awake in bed most of the night.  She's sleeping again this morning.  It will take a while to get her back on the normal day schedule.

Better

Hope is better.  She had two wet diapers yesterday, no vomitting and started cooing again despite the many seizures.  Ashley had a horrible weekend, full of crying, posturing and moaning.  She did calm down when we took her outside for a walk.  Not sure what's going on with her, but hopefully a bath and a fun hair do will cheer her up today!

This morning we are getting the girls all 'done up' for their filming.  Rehab for children is filming the girls and a little interview with us, to use for the foundation (help raise money).  They'll be here at 9am, so I better get hopping (it's 7:47 right now!).

Meds in...

Hope kept her meds down today, and the seizures have slowed down and she finally closed her eyes for a bit.  I've got water dripping in slowly and now I just have to wait for a wet diaper.  She seems a bit better now that she's had a little nap.  Ashley is having a 'moaning' type of day, and Brodie is playing with a friend.  Alex is at his fastball tournament, and I'm working on the 'Ashley and Hope Instruction Manual', just in case it's needed when I go to the hospital to have this baby. 

It's a quiet, lonely day...which I should probably appreciate!

still sick...

Yep, Hope is still sick.  She hasn't kept anything down today and she's having horrible seizures and vomitting old blood (as expected/predicted). 

But I actually snuck away for the day.  My wonderful husband suggested that I could still go to the conference today if we asked our repite worker to stay until he got back from his ball game (which was the only game he had today, luckily), and then he would stay with the kids for the rest of the day.  It meant rearranging the hours for respite a bit, but Ashley (our respite worker) was wonderful and said 'yes'.  So I left this morning, and just got back now at 10:40pm, a long but inspiring day.  It was the annual Marian Conference.  There were many wonderful speakers, but I was touched most by the personal account of healing that came only after the individual learned to offer up her suffering to Christ.  Exactly what I needed to remember!  Our suffering need not be for nothing, we can offer it up to glorify God.  Only He can make good come of it.

Thank you so much for the encouragement through email and comments here on the blog. 

Hope is sick again!!!

Well, I have to admit that I am feeling a little down right now.  I've been feeling so great this pregnancy that I had made plans to take the girls with me to a conference this weekend, all by myself.  Alex will be busy with his fastball tournament, and I didn't have enough hours left to get respite for the whole weekend.  I thought it would be fun to listen to the speakers while I held the girls.  Tonight's fiasco reminded me why I don't take the girls very many places.

We packed up the whole family to go watch Alex play fastball tonight.  Ashley didn't just moan, she full out cried, for 90% of the evening.  Hope sputtered and gurgled, but I thought she was doing okay.   Brodie had fun playing with the other kids.   Then the sun went down and the mosquitoes attacked!  What was I thinking???  Ashley cried the whole ride home, and then Hope started puking... A LOT! 

If I'm going to complain...I might as well go the whole distance.  I'm 38 weeks pregnant and for the first time, my back and hips are aching like crazy.  What was I thinking?   I can't take the girls out for two full days on my own.  Crazy.  Well, obviously I am going NOWHERE  now that Hope is puking.  As most of you know, she will now start a series of violent vomitting episodes during which we will see her stop peeing from lack of fluids, start seizing almost constantly from lack of meds (because nothing stays down), and eventually the vomitt will be bloody from constant puking.   And then I'll be depressed from watching it happen all over again.

So...now I've unloaded and I'm staring at this post wondering about the wisdom of sharing it.  I suppose I'll share it and trust you all to understand that 'yes' I have my ups and downs, and that's okay.