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!