Daily/Weekly Thoughts
Daily/Weekly Thoughts

April 2016

Another Successful Vancouver Visit!

Emmett is One Year and One Month Old today!

There was not a new balloon for Emmett today (Saturday, April 9, 2016), since he just got his Tonka Truck balloon a couple of days ago (Notice this obvious sign of restraint on my part!). Even so, we are celebrating that this is his one year and one month birthday.  Emmett did get lots of hugs and kisses from his mommy and daddy. And in the midst of his babbling we are certain that we heard 'momma' more than once. Big steps for this little boy.

This next image is a picture that you will have to use your imagination to create, because I don't have a pic to go with it. In this image you will see Emmett smiling, and with little paper medication cups on his feet. He knows that they're there and he's moving his feet about. Not necessarily to knock them off, but rather to amuse the nurses and staff at Canuck Place who put them on his feet. Emmett, in his glory at that moment as he was surrounded by four or five staff (they had a down moment in their hectic pace), was loving being the centre of attention. And he absolutely was showing off!

On Wednesday, just a couple of hours after his procedure, Alisha commented that she believes her son to be an extrovert. Josh agreed. They both pointed out how he simply lights up with both focus, smiles, and attention when someone comes into the room - or in this case the area around his hospital bed. Alisha has also observed that he loves the ICU at BC Children's Hospital as he gets so much attention there. Even though the procedure is far from comfortable - evidenced as his heart rate is literally a mile a minute - within a couple of hours he is ready to share smiles with his visitors. Dr. Selby is, of course, his favourite guest and she was at his bedside a few times during his stay. As his neurologist she is key to his care and her enthusiasm towards the movement he demonstrates is hard to conceal. In this photo, Emmett is preparing to break out into a grin and it is literally just two hours after his procedure. From the grip he has on his plastic sock monkey, it's obvious that it was a winning choice! The tiny foam cylinder sticks have been a long time favourite. As his grip on the foam sticks continues to improve, the long awaited episode "The Return of Super Diaper Head Baby" (play the Star Wars theme music in your head) is getting closer and closer to this blog! 

Emmett's dietician has put him onto a new formula. To this point he's been on breast milk and baby formula, but this new stuff has chicken and veggies included. More fibre! Food that sounds real! Exciting times! (I think I will let others change diapers for the next little while!)

 

Emmett is absolutely enjoying the lovely spring weather. And spring at Canuck Place is absolutely wonderful. This beautiful Vancouver property is absolutely majestic looking and is wonderfully setup, both inside and outside, to meet the needs of the children who are patients there. And their parents, also. A huge thanks to the amazing staff at Canuck Place. A giant hug to the visionaries who developed this oasis of calm and quiet for medically fragile children and their parents. And thanks to all who make donations to keep this facility running smoothly.

Now some pics to enjoy!

 

Comments

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Guest Comment 1 year ago
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So glad everything went well! Love and prayers! To Emmett and Family!
Guest Comment 1 year ago
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Today I shared some of Emmett's pictures, videos and progress with a co-worker at Sandowne P.S. whose niece was diagnosed with SMA Type 1 and passed at 6 months of age. Her heart is smiling for Emmett through her tears and she has very big hopes and prayers for his drug trial to continue to allow him to progress.
Frank Ewald 1 year ago
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I'm glad that you were able to share the blog with someone who has also gone through the terror of an SMA Type 1 diagnosis. It is hope! And no matter how strong your faith is, when the medical community cannot offer any plan it is terrifying. This drug is not readily available yet, but as the trial progresses we hope that it will be! Thank you for sharing. Frank
Guest Comment 1 year ago
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Such joyous family pictures. May you enjoy lovely spring days with Emmett. I am sure his smile is a blessing to all who see him.
Guest Comment 1 year ago
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My comment above appears to be anonymously sent. It actually contains prayers and blessings from the Meighens!

Fifth Trial Session

Today, Wednesday, Emmett will be at BC Children's Hospital for his fifth session in the pharmaceutical trial. Please, your prayers and warm wishes are needed by Emmett, Alisha, and Josh. This is very challenging for all three of them.

Emmett will be going through the trial process and the real drug is administered through a lumbar puncture.  I'm cringing just typing that. He will be in the ICU all day. Alisha and Josh will also be at BC Children's hospital all day. There will be many tests, assessments, and specialists to see and they need to see and hear everything. Except, of course, the test procedure during which they aren't allowed to be present.  

The staff at BC Children's Hospital are amazing but that doesn't take away the challenges that they all face. It's been four months since his last session and Emmett is much more expressive now. If he doesn't like something, he can readily express himself. And he doesn't like this procedure. He does, however, love seeing Dr. Selby who is his neurologist. And he enjoys all of the attention. If he is unsure of someone he will act shy and turn his head away, but that does not usually last long.  

He spent last night at Canuck Place, a beautiful children's hospital. Last night he spent almost an hour in the big bathtub there. He was turning 360 degrees, making big waves, and just having fun and wearing himself out. He will be back there tonight. He loves the attention and surroundings there. It is the perfect place for him.

Thank you for reading this blog. Thank you for praying for Emmett plus his mom and dad. Thank you for your concern and warm wishes. On a day like today, the Willms' family really need it.

oh yes, Emmett will be getting another balloon! Count on it. 

Comments

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Guest Comment 1 year ago
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We are praying! xo Uncle J and Aunt CA
Guest Comment 1 year ago
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Hugs and prayers to everyone.
Guest Comment 1 year ago
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Praying!
Guest Comment 1 year ago
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Thinking of you all yesterday, today, and always. Many prayers of hope and healing. Aunt Barb
Guest Comment 1 year ago
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Thanks for sharing. I am praying for you. Pam