Christmas fun!

We discovered the best way to position the girls at Grandma and Grandpa Allen's, is to use the recliner.  It fits both girls and they look so cute sitting together.  Ashley slept a lot this Christmas and when she was awake, she coughed a lot and was kind of lethargic.  But that  meant we didn't have any crying or moaning or screaming...yippee!

We hosted my family for Christmas this year.  The energy level was high with all the  little cuties running around.  Check out the cute little girls with Grandpa...

Mira has started grabbing her toys and pulling them into her mouth.  Very exciting indeed!

Merry Christmas!

It's Christmas Eve and the house feels a little more peaceful today.  Ashley is sleeping right now, still sounding a little congested but she's resting comfortably.  Hope is more alert and has a stronger cough, so she seems to be coming along.  Mira and Brodie are doing great and I'm feeling better.  Alex didn't get sick, lucky him.  I hope everyone is enjoying some memorable family moments this Christmas.

Make a photo album

The Flu!

Well, Hope is managing fairly well.  She's still coughing up yellow stuff, but she's managing to get it up and her breathing is not laboured.

Ashley surprised us by throwing up on Friday night.  Just after we arrived at the hotel in Brandon for my Grandma's Christmas gathering.  She must have had the flu because she threw up again the next morning and was sick the whole weekend.  Yesterday, her breathing was so laboured that I called Dr. Harlos to take a look at her.  She's looking a bit better this morning, but still struggling to cough up the secretions.

To top it all off, I was sick with the flu yesteray and have never been so sick in my life.  Today I am sitting her typing and realizing that I better go lie down reall quick...I still don't feel so great!

Hope

The girls are back from the 'out-of-home respite'.  Ashley did very well.  She only needed two doses of morphine.  When we got her home yesterday, she was content and smiling.  It was lovely.  Perhaps the laser therapy helped...who knows!

Hope stopped vomitting and eventually started peeing again.  She had perked up when she was there, but yesterday morning she was drowsy again.  When I got her home, she started coughing up thick yellow/green stuff...lots of it!  Her chest doesn't sound too good this morning, but she's breathing comfortably and sleeping right now.  The Palliative Care Team stopped by yesterday to check in and take a look at Hope.  It's always helpful to have a second opinion when listening to a child's chest.  I can't say that I'm an expert. 

So, I'm not sure where this will lead, but we'll continue on as always.

Mira is giving us lots of smiles (except when the camera comes out!) and Brodie is a fantastic older brother.  He loves to read to her.

Respite

It appears that Hope is perking up a bit.  She had a bit of vomitting yesterday in the morning.  Today she has started opening her eyes a bit more and she had a little pee.  So, it sounds good.

We took the girls to their "sleep-over" yesterday.  It is their scheduled 'out-of'home' respite.  I've never called so much when they've been gone, as I have this time.  I don't need to worry, because Lonnie & Nathan do a great job with their care and with decision making, but I still need to be in the loop.  Thankfully, they don't mind me calling.  It will be nice to have a break from Ashley's "upset" and Hope's vomitting, though.

Time to recharge!

Hope is sick

This pic was taken in November, when we went out for Cousin Ian's birthday party.  Hope isn't looking quite as good today.  She started vomitting on Thursday, and has been on the couch ever since.  This morning she is keeping some water and meds down, so it looks like she's on the uphill swing.

Ashley had a bad day on Thursday despite the laser therapy on Wednesday evening.  The Palliative Care/Symptom Management team came over to discuss options.  So, the plan is to start morphine.  Unfortunately, the pharmacy did not get the meds out to us last night.  So, we'll suffer through the weekend, and get them on Monday.  This included Hope's Granisitron which she really needs to stop the vomitting.  Hopefully we can manage without it.

Laser Therapy

Ashley is still crying every day, some days worse than others.  We've started taking her to the chiropracter at 5pm in the evenings, three times a week, because she will then sleep well at night.  On Monday we started Laser Therapy for Ashley. 

We go to the Chiropracter office for this, and it is a cold laser, which means it does not burn.  Positive effects of this therapy include; anti-inflammatory action, increased metabolic activity, increased vascular activity and stimulated nerve function.  For Ashley, I am at my "wits end" and am willing to try anything!

She was completely relaxed and even smiling during the 10 minutes of Laser Therapy.  That night, she slept very well and did great at school the next day.  We're going to take her three times per week, for about 6 weeks and see if the results are worth the effort of taking her out that often.

Thought I would share this pic.  It was pretty cute to see the girls all lined up, watching me get supper ready, and then Brodie jumped in there to join the photo.

Our day...

Once a week, we take Ashley and Hope to the chiropractor.  Dr. Dan has been involved with our girls for a very long time.  When Ashley was younger, we would take her every day to be adjusted (it was the only way to get her to stop seizing and fall asleep).  For a while, we even took her twice a day.  There is no cracking or manipulation.  The adjustments help the girls relax (especially Ashley) and keep their bowel movements regular.  You can see Ashley and Hope on the tables below.

Mira had her 2 month check up today (and needles).  She's 13lbs, 4oz and 2 feet tall.  She falls in the 95th percentile for both height and weight.  Yup, I have big babies!

Check out Brodie, dancing with Mira...

Sleepy at school...

Well, we are still trying to get Ashley comfortable and we do have more calm moments.  The last two afternoons, Ashley has gone to sleep in her kidkart while waiting for the bus.  We get a note home every afternoon about Ashley's school day, which informs us that she has been very sleepy at school.  The good thing is that she is sleeping really well at night, and I have no intention of giving that up.  She's having some very intense seizures now.  She gets very red in the face, holds her breath and gets this look of panic on her face.  I don't like it!

Mira is eating and sleeping well.  We'll be going in for her 2 month check-up on Friday, so I'll know her weight then.  No, I have not had her weighed since the two week appt, and I don't own a scale.  All I know is that she is nice and pudgy!

Hope still sleeps all morning.  She's getting too long for the couch (which is her permanent spot), so we're going to have to do something about the sitting room.  The girls take up all the couches when they're all home and we end up sitting on the floor!

Daddy's home

After a week trip for work, Alex returned home just in time to start shovelling snow.  Yeah for me!  We're trying to keep the driveway 'super-clean' to facilitate wheelchair mobility to and from the bus. 

We spent the weekend watching Brodie play hockey, cuddling the girls and shoveling snow.  Brodie has had a lot of fun outside making snow forts.  When awake, Mira spends her time eating and smiling.  Hope enjoys life with little half smiles while drooling on the couch.  Ashley has moments of soft smiles which are interupted by seizures followed by extremely upset crying.  Basically, nothing new, but we're happy to have Alex home.

Rehab Centre for Children

We just got back from an appointment at RCC.  Lauren helped me today and we managed to get Brodie out the door by 8:45am, pack up the three girls, two strollers and one wheelchair into the van, get a coffee at Starbucks and arrive at RCC in time to get everyone unloaded and into the building by 9:30am.  We're getting very good at this!

Ashley was fitted for her new wheelchair while we were there and they used the molding device to create a mold of her back.   This allowed them to form a piece of foam for the new wheelchair that will fit her twisted spine and hopefully provide a comfortable sitting position for her.  It will take a couple months before we get the wheelchair, but the process is started and I'm happy.  Ashley has outgrown the KidKart and Hope is using it.  While we were there, they also adjusted Ashley's Convaid Stroller so that the seat base is now longer.  Ashley really needs to stop growing!

Of course, I forgot my camera, so there are no pics!  Oh well.  We've increased Ashley's Clonazepam twice in the last 10 days.  This made for a nice morning, despite the four major seizures that Ashley had while we were at RCC.  I've concluded that Ashley is not in a very stable state right now, which makes sense because Hope is rather stable and the girls always seem to take turns.

The same...

Everything is about the same.  Mira is doing great and Brodie is enjoying her as much as we are.  Ashley has good moments and a lot of crying moments, so we're still increasing meds, hoping to find the right balance.  She's definitely doing better, because we have more good moments, and more quiet cuddles.

Smiles and Crying

We're lucky to have Mira's smiles to offset Ashley's crying.  We increased Ashley's Risperidone last night, which should have given her a good nights sleep.  She was awake and crying by 7am unfortunately.  This morning she alternated between seizures and very upset crying.  I kept her home from school yesterday because she was so upset.  I sent her today, but I'm not sure if she'll do well.  They have a little room with an excercise mat where they can help her stretch and get some quiet, if needed.

Sleep!

We are definitely getting more sleep now!  Mira is six weeks old now!  She's only waking up once a night, and during the day she's eating a lot and having good naps.  Mira and I saw our chiropractor a couple times this past week, following the little car accident (we were rear-ended), and we're both fine.  I don't have any neck pain or head-aches anymore.

 Hope is doing about the same.  We can get these sweet little smiles from her when we sing to her and play with her hands, but she's mostly sleeping and still has a lot of seizures.

 Ashley is doing fairly well.  I'm getting some very positive comments from her teacher and EA about school.  She still starts crying around 5 or 6pm every day and it appears that she's not sleeping through the night anymore, so we'll be looking at another med increase soon.

 Brodie has a couple hockey games this weekend, and now is telling me that hockey is great.  He scored three goals in the game yesterday (according to him), so I guess this makes hockey a lot more fun.  He wasn't too excited about the practices, but now that the games have started, it's all good.  Katie was lucky to see Brodie's game yesterday.

Friday

It is Friday and we were happy to welcome Alex home after a week away for a work trip.  We were lucky to have Katie, my cousin, here helping us for the week.  We had so much fun working together, and accomplished a lot too (although I've been told not to tell everyone about all the cooking, laundry and cleaning she finished while here...te he).  It was a great week, and we're thrilled to have Alex home.

Teeth...

Ashley lost her two front teeth this weekend, and then lost another top tooth.  Brodie is telling everyone how unfair it is that Ashley has lost more teeth than him!  You can see Ashley in the photo below having her hair washed...

Now we'll have to get used to Ashley's new look.  She had a good sleep last night and went to school very happy.  She's still crying very hard each evening. 

Halloween

Halloween had some added fun this year.  I've never spent money on a baby costume before and this year I did.  Wow, was it ever fun to dress Mira up in her little butterfly costume (which we found on sale of course).  She was so cute and squishy and cuddly.  Too fun!

 Brodie was a storm trooper (Star Wars again).  This is the first year that he got really excited about running to each house.  It was fun to see.

 We carved some pumpkins that we had left from Grandma and Grandpa.

Ashley and Hope didn't get to join in the fun this year.  We have been given a little extra "out-of-home" respite and they were gone for the weekend.  This made it easy to get out and see some friends.  Ashley and Hope had a good Halloween at their respite home.  Ashley had some excitement.  She lost her two front teeth while she's away.  So, she'll look different when I go pick her up.

Alex started a new job last week and today I drove him to the airport for a work trip to Canmore for the week.  On our way to the airport we were rear-ended, and now I have a head-ache!  It was just a minor little bump because we were stuck in traffic, but still rather annoying.  My neck stiffened up and I got a headache immediately, so I took myself and Mira to the chiropractor.  Mira was all strapped in her carseat, so hopefully she wasn't jolted too badly.  The other driver was probably on his cell-phone, because traffic was barely moving and all the sudden we felt/heard a big bang.  Sillyness!  Mira started crying immediately, and I let out a yell from the surprise of it.  Then the neck stiffens and the headache started.  Here we go again, I thought to myself.  Alex was rubbing his neck too, so I'll have to call him tonight and see how he feels.

Ashley's school meeting

We had a school meeting for Ashley today and discussed her 'Education Plan', which I was very impressed with.  It was great to hear about the positive experiences that Ashley is having at school.  The children like to hold her hand, sing songs to her and they even show her their art work.  It sounds great and I look forward to spending another afternoon in the classroom with her to meet her kindergarten friends. 

Many people probably don't realize what a wonderful opportunity this is for Ashley and the kids in the classroom who get to spend time with a child like Ashley and grow up knowing that there is nothing to be afraid of.  Ashley is accepted and loved by the children and her smiles in response to them show her happiness to be involved in the classroom.  Ashley's education plan has goals that are very reasonable and attainable, such as..."Ashley will hold hands with a classmate at least once a day by June" or "Ashley will continue to sit with her classmates at the meeting area.".  Other goals involve positioning, stretching, and movement. 

I am very impressed with the team at the school.  They have excellent ideas to stimulate Ashley and include her in activities.  Hearing their comments about her smiles and positive responses during school was encouraging.  Ashley's EA (educational assistant) has done a wonderful job helping the children interact with Ashley and I feel that we have been blessed to have such a calm, caring worker to help her.

Today Grandma Neufeld is here to help and you can see Brodie in the photo below, reading his books to Mira, Grandma and Ashley.

Mira came with me to the meeting at the school and charmed everyone.  She is doing so well.

Mira smiles and Ashley cries!

Mira is three and half weeks old now and she's been smiling at us for a few days now.  I wish I could have a camera strapped to my head to catch all the precious moments, but unfortunately I've missed the biggest smiles.  I did capture a small smile and I'm sure there will be more to come.  The best part is watching Brodie giggle with her and get her to smile at him.  It's been a long wait for these moments...

Yesterday we had an appt at Rehab Centre for Children.  We met with Dr. Skalsky to assess Ashley's Scoliosis (her spine is significantly shifted to the side).  He told us that this happens with growth spurts, and Ashley has definitely been growing a lot!  We also discussed her discomfort and posturing.  Since Sunday she has been crying and posturing more and more each day.  We've increased her Risperidone today, but the reality is that it won't help for long.  Ashley's irritability and crying is related to the posturing she does (she twists to the left and arches back, stiffening her body).  It's called Dystonia. 

Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.^[1] The disorder may be hereditary or caused by other factors such as birth-related or other physical trauma, infection, poisoning (e.g., lead poisoning) or reaction to pharmaceutical drugs, particularly neuroleptics.^[1] Treatment is difficult and has been limited to minimizing the symptoms of the disorder, since there is no cure available. (taken from Wikepedia)

Dystonia is progressive and for Ashley it is a result of her damaged brain.  Research has shown that there is very little that can be done, so we'll continue trying to help her find comfort with medications that can help her relax her muscles.  It was good to know that this is something common among children with brain damage, and not a result of something I was doing wrong.  One can't help but try to figure out what to do differently when you're child is in agony, but nothing I've tried has helped for any length of time.  And yes, I have explored every angle.  More stretches?  Quiet time? Warm baths? Hot baths? Cuddles? Music? More food?  Different food? Foot massage?  ect...   Nothing works consistently, and her crying is not related to anything, other than the fact that she is worse when she doesn't sleep at night.  So, our first goal is to keep her sleeping at night.  Unfortunately, the Risperidone that helped her sleep at night for a couple weeks has already dropped in effectiveness.  She's becoming tolerant to it already, and we find her crying/posturing in the morning for the past few mornings.

So, there it is.  We'll just put on a smile and continue to pray for Ashley's comfort!

Nothing much...

Mira is three weeks old now and doing well.  Nothing too exciting happening which is just perfect for right now.  We're just trying to get enough sleep and I'm trying to avoid catching whatever illness Brodie and Alex have.

Ashley seems to be sleeping better at night with her new medication (Risperidone), and only starts crying around 5pm, so school is going a lot better.  Hope is having a lot of seizures and drooling a lot, so we're not sitting her up as much anymore but that's nothing new.  Brodie has started hockey and we took Mira to his practice this weekend for the first time. 

Happy Thanksgiving!

So much to be thankful for this year.  The girls continue to bless us with occasional smiles and are able to stay at home with us.  Brodie is happy and well adjusted, learning a lot and showing his compassionate, helpful nature every day.  Most of all, we are so blessed to have Mira join our family and we still celebrate her health and love every small thing she does.

We enjoyed the good weather this weekend by sitting outside, cuddling the girls and watching Brodie sell his pumpkins.  You should see the signs Alex put up..."Farm fresh, organic pumpkins".  We had a lot of customers and Brodie has a full piggy bank.  Thanks Grandma and Grandpa for the pumpkins.

So Joyful!

What an amazing time of joy.  I'm still smiling at the news that Mira is healthy.  She showed so many good signs that I shouldn't have worried, but I still kept myself from hoping that she was healthy.  What an amazing change to be able to hope for the future of my child and anticipate smiles and crawling and laughter and hugs!  It just doesn't matter that I hardly get any sleep.  Mira is sleeping a bit more now, about 3 hours at a time, but only till 5am, and then she's up every hour.  She's so cute though, it hardly matters...

We had a wonderful weekend, celebrating the news with family and friends.  The girls are home now and we'll start getting into a 'normal' routine...hopefully!

Wonderful News!

The test results are in and Mira is healthy!  We are so overjoyed and overwhelmed with so many feelings and hopes that we haven't been able to indulge in for the last two babies.  Every little thing with Mira is so amazing.  What a journey!

We were blessed to have an extra respite weekend for this weekend, so we just dropped off the girls and now have a free weekend to celebrate.  Brodie came home from school and when we told him, we enjoyed a great, big happy dance with Mira.  The message from the doctor came on our message machine, because we went to Brodie's school for Chapel this morning.  How fun that we had just finished singing praise songs and then came home to a message on our machine giving us this amazing news (we've replayed that message a few times!).  God is good!

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.