Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, March 6, 2016

Stepping Stones

Wow. It's amazig how fast life can go when you blink! I have been fairly good about keeping up the blog and now realize it has been a few months already! Lots has been going on in the Gareau family during those months. We have had ups and downs.  I will do a quick recap and get you up to speed with what has been going on, and especially what Meagan has been doing. She surprised a lot of us this winter and I can't wait for everyone to see her progress.

I came across an opportunity late Fall to bring another dog into the family.  Being that we really missed that "big dog" presence in the house, we wanted a dog sooner than later to be already used to our family by the time the new baby would walk, and the puppies were what we were looking for, we decided to go ahead and commit to taking one of them for our newest family member. We didn't tell the girls, but instead told them we were going to the small petting zoo farm we have visited before. When we got to the farm where we were picking up our new puppy, the kids were absolutely shocked. So much so their reaction was quiet and in disbelief! They thought Brian was just getting a puppy for them to pet so when we told them he was ours to bring home, they were elated. The girls chose to name him Bentley and so he has taken his place in our family quite well. He has big shoes to fill - Dudley was such an integral part of our life. But we have no doubt Bentley will make his own path in the family and be a joy to all of us, especially Meagan.



Prior to Christmas, Meagan's four older sisters competed in the Irish Dance Regionals (Oireachtas) again this year.  They did both team and solo dances and everyone did a wonderful job! Reilly placed 18th and qualified to compete at Nationals.  Kaitlin placed top 10! She also qualified to go to Nationals.  Anna danced her first solos and made it through with two clean performances.  And all three girls along with Maura competed in team competitions where they did a very good job and will also be going to Nationals for teams.  I'm so proud of them, especially since they had to go with Brian on their own since I was so close to my due date.  They traveled on a plane for the first time, had a total blast, danced really well, and enjoyed a wonderful weekend with Brian, my mom (who flew in to help), and all of our Irish dance friends.   

 

 


 

Christmas was great - although I was very very pregnant and had on again off again labor, we had a great time with our family.  Meagan enjoyed opening gifts.  For the first time she was aware at least of the excitement and the "buzz" going on around her and really got involved.  It was so fun to watch her discovering all the new excitements of the season and watch her taking it all in.  She gave us a little surprise as well over the break - for the first time, Meagan started taking independent steps.  One day, she just tried to make it between our couch and Brian's chair... and she was able to do a few steps and then throw herself into the side of the chair.  It was amazing! This trend continued over the break and into January and by mid January, Meagan was moving around our living room or her classroom independent of her walker.  She is really enjoying her newfound independence.  It presents a few new challenges now as she doesn't have great balance, so we are more concerned with falls on the front part of her head (where she is missing skull).  We also have to now deal with a more intangible challenge - her desire to walk even when she cannot or when she tires out.  We love to let her try and walk whenever she can, but, sometimes she tires out and falls a lot, or simply wears out and can't.  And other times there are too many people, changes in the ground where we are, or too many crowds for her to safely or successfully walk.  So we have had to find new ways to deal with her stubbornness .... we absolutely love the drive it's giving her, but at times it can be extremely difficult to help her understand when she does need to rest and use her wheelchair or let us help her. 



Unfortunately, we also had a sad occurrence over Christmas break.  Our beloved adopted cat, Francis, passed away suddenly.  He stopped eating one day and went downhill fast.  I took him to the vet where they tested him for several things.  His white count ended up over 90,000 and his marrow was barely making any more platelets.  It was awful.  I syringe fed him for a week to see if he would turn around, but, he unfortunately started to get fluid in his lungs and so we had to take him to be put to sleep.  He was so young to go and was such a wonderful "bridge" when we lost Dudley.  He helped us get through his loss and we were looking forward to many more years with Francis and Bentley.  But unfortunately, it wasn't meant to be.  It's so amazing how he came in to our lives and just seemed like the perfect fit.  Perhaps that was his purpose... to come to us, help us through Dudley's loss, and then be on his way.  Either way, he was a very much loved member of our family and we will greatly miss our one eared cat. 

 


In early January, things turned positive once more with the birth of our 6th daughter, Cara Maeve.  She came on her own, on her due date.  The whole day was wonderful.  Meagan wasn't too keen on her little sister at first - she doesn't' like toys that move, and in the beginning, Cara was just like a baby doll that moved so she wanted nothing to do with her! Over time, I started easing her in to being a big sister.  I would leave a diaper on the floor and ask Meagan to hand it to me, or ask her to come a little closer for a picture for Pop Pop, and eventually when Cara was a few weeks old, Meagan was fully in to the role of big sister. 
 
 

Cara has been a very happy laid back baby - I suppose she realizes she's #6, so she may as well take it easy and go with the flow.  It's been so fun to see Meagan in the role of big sister - she tells everyone "that's my little sister," and gives her hugs and kisses. We had her baptized at our alma mater when she was two weeks old - it was an incredibly special weekend to see her being baptized in the church where Brian and I first started going to Mass together as college students.  Just recently, Cara has started to smile and Meagan loves to touch her cheeks and watch her react with smiles and coos. 

 
 

The biggest "milestone" over the last several months has been celebrating a very special anniversary.  As of the third week in February, Meagan was able to officially celebrate a WHOLE YEAR with no surgeries, hospital stays, or emergencies.  I can't even believe I am saying that because being at children's hospital was basically part of our "normal."  That has changed a bit, and while we absolutely ADORE Meagan's doctors and the neuro floor nurses, we are happy to say that part of our "normal" has changed for the better.  It's amazing what can happen when she stops getting interrupted and is allowed to just be Meagan and learn and grow.  We know due to her diagnoses and complex shunt system this won't be a forever thing, but, we will take every day past a year we can get.  We are so happy Meagan has been afforded a year to just be Meagan. 

 

Finally, the newest development has been with Bentley and Meagan.  We had considered getting Meagan a service dog, but the schedule wasn't a good match with our family.  So we got Bentley on our own.  Someone asked me if we were going to just have him trained for Meagan.  I had no clue that existing pets could be trained, so I started to ask around.  I called the Children's Hospital Pet Therapy contact to ask if they knew of any local trainers that would work with and existing pet.  They were able to give me several referrals.  I talked to three of them, and finally we decided to have Bentley evaluated at Comprehensive Pet Therapy.  In order to move forward with service training, the owner said Bentley would have to pass a temperament evaluation.  This is because to even embark on the service training journey, the dog (no matter the breed) needs to meet certain personality and trainability requirements. 

I took Bentley to the training center on a Tuesday night.  We met with the head trainer/owner who did the evaluation.  It was very interesting to watch - he did many tasks with Bentley, a few of which were testing friendliness, how he reacted to different positions and temptations, and how he reacted to different intense stimulations (like loud noises or things thrown in his direction..etc.).  After two and a half hours of evaluation, we found out that Bentley passed! The trainer we were working with was a former neuroscience researcher, so when we designed the program for Bentley and Meagan, it was definitely one of those "meant to be" moments.  It was very easy to make goal behaviors for Bentley because the trainer understood many of the intangible needs Meagan has. 

 

All that said, service training is extremely expensive.  Bentley will be away three separate times for about 30 days each living with a trainer and learning what he needs to learn.  In between these board training stays, he will come back home and live with us at which time a trainer will come intermittently and work with us and make sure Bentley is continuing what he is supposed to be doing back in the home.  We started a fundraiser last week to raise funds for tuition to cover two of his three board training sessions - we will also be saving on the side for the third board train.  Needless to say, we are completely overwhelmed with how the fundraiser has gone thus far.  Since we have reached the first board train tuition, we are now able to talk with the trainer tomorrow about Bentley's file and set up the official date he will go for his first board train.  In the meantime, we will keep the fundraiser open to try and work our way up to his second board train amount so we can keep Bentley on a good schedule that will be best for what his behavior goals are.  We cannot say enough how much heartfelt appreciation we have to all our family and friends rallying around Meagan to reach this goal. 

Overall, the last few months have definitely been a line of stepping stones.  Some have been up, and some have been down...but that's how steps go anyway, right? One foot is always in the front, and one in the back as we move.  What matters in life is which foot we pay attention to - the one in the back, or the one up front pushing us to the next point in our life.  If we focus on the back foot, we will never see the potential...however if we ignore the back foot, we lose our momentum that pushes us forward.  Stepping stones are definitely a balance and the last few months have certainly unfolded in that sense.  We are so excited for the continuation of Meagan's journey and what it will bring.  Adding in Bentley's training makes me hopeful Meagan can enjoy more and more stepping stones on her own as she grows.


The link for Meagan's fundraiser is HERE (Help Meagan Get Bentley Service Trained).  We appreciate any donation whether it be monetary, sharing her link, spreading the word, or keeping all of us in your prayers.  I will be updating the fundraising site with facts about Bentley's training, and as he starts, what he is learning.  We look forward to what this new relationship can mean for Meagan's independence, and therefore her ability to do more with her sisters and the family. 



2 comments:

  1. I was so excited to see you posted again! Congratulations on your new beautiful baby. She is lovely. I can't believe how much Meagan has grown and changed since the last time you posted. She has changed so much. Her sweet little voice on the puppy video made me tear up a little. How awesome that she is walking a bit. We had/have the same struggle with our Ellie on stamina and safety fights. She is 6 but just started walking without her walker about a year ago. Even though its better, we still have that issue.

    Also, hooray for no hospital stays!!

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  2. thank you for posting.your new baby is lovely.Im so happy the way meagan is doing and growing it is so wonderful! I will check in again soon the other girls are wonderful aslo you have a great family.

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