Daily/Weekly Thoughts
Daily/Weekly Thoughts

December 2015

Merry Christmas

Merry Christmas!

Alisha, Josh, and Emmett are so thankful for the support, friendship, and love that you have given their family this year. It has meant so much to them. What a fabulous outpouring of love, prayers, and positive thinking. Each and every contact is so appreciated. Thank you and keep it up - short notes via social media are ideal! On this day they are celebrating the birth of Jesus - the babe in a manger who is the reason we celebrate Christmas.

Christmas eve was a great time and a full Willm's house. Josh's parents, brother Ben and grandparents (Emmett's Great Grandparents) came over after their Church's Christmas Eve Program. Alisha, Josh, and Alisha's sister Katie went to Level Ground's Christmas Eve program while Alisha's parents (one being me) stayed with Emmett. Then everyone gathered at Emmett's Place for a noisy game of Catch Phrase. While Emmett welcomed everyone into his home, he quickly fell asleep inspite of the raucous party in the living room.

 

Every parent celebrates so many things with the birth of a child. Likewise, Alisha and Josh are celebrating with Emmett. Celebrating Emmett's birth and life. So many things have happened that it is hard to keep up - and hard to keep you updated. Emmett is doing very well on his Bi-Pap machine (similar to a sleep apnea machine for adults). At the same time as this machine arrived, Emmett was approved for overnight nursing support. This has been a great relief - as everyone was getting stretched thin due to lack of sleep. Not only the challenge of a restless nine month old, but also one who is connected to a feeding pump, an oximeter, and now a Bi-pap machine (which in itself requires constant monitoring). 

Emmett loves the Christmas season. While he wasn't thrilled to meet Santa Claus, he is absolutely mesmerized by the lights on trees and houses (we may have to keep them up longer than is socially acceptable!). British Columbia, unlike most of the rest of Canada, has been having snow! It hasn't stayed where Emmett lives, but from the expression on his face we can tell you that, like his mom when she was little, Emmett does not like snow! We are sure that this will change, but at the moment it is stuff that falls on his face and he disapproves. He does, however, love when the cameras are out and he is the centre of attention! He searches out the paparazzi. The question is, will he like his presents Christmas morning or will he prefer the wrapping? My vote is the wrapping.

Emmett got one of his Christmas presents early. It is a specially designed swimming ring that securely fastens around his neck - supporting him in water (a pool or a full bathtub) - allowing him the freedom to move his limbs. We've said before that he loves water and this gives him freedom like nothing else. Before you begin to worry about his safetly while using this, it has the full approval and support of his physiotherapists. In fact, last week Alisha and Emmett were in the pool with two physiotherapists who were checking him out. It is wonderful to see him twist and turn; make kicking motions with his legs; backstroke movements with his arms.

There are so many facing challenges this Christmas. We share our love and prayers with you. We hope and trust that you reach out and accept support - it is available in every community. We know some of your stories but obviously not all of them. Alisha and Josh are community care-givers. Now they're also the recipients of care from others and it is such a blessing. We cannot say thank you enough!

Emmett is a gift from God. The best Christmas present ever! 

Don't forget to click on the pictures to expand them!

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Guest Comment 1 year ago
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Merry Christmas and much love from the Bender family! xoxo
Guest Comment 1 year ago
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May the Lord bless you this Christmas and give you a healthy New Year! Merry Christmas! Love
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Happy New Year to all of you. We trust Emmett's will be a miracle one. Love, Esther

Super DiaperHead Baby Stays Home!

There is no question, the winter doldrums and cabin fever have struck in beautiful British Columbia. The promise of hardly any snow was smothered today. Smothered by the falling of large, fluffy, white snowflakes. What is happening with BC's weather? We Easterner's were promised cool summers and warm winters. The past two summers have been blazing hot with heat waves that, such as this past summer, caused Super DiaperHead Baby to cast off most of his costume and only wear his diaper. And not the one on his head! In fact, if he could get away with it he would wear even less than that. And winters? Snow today in BC yet well above zero in Ontario! Has the world gone mad? We have no answers for serious questions like that because Super DiaperHead Baby could care less about getting into a debate about weather, politics, or anything else. His task, to share his magic touch with everyone. To brighten their lives when they feel like they're stranded like an alien on a strange planet. When that happens, Super Diaperhead Baby is there in a heartbeat to reach out and touch you! To make you smile again. To make you realize that there is so much joy in life!

In everyday mode, Emmett does many things like every other baby does. Such as filling his diapers and peeing on stuff. As a result this creates a huge amount of laundry which must be washed, dried, and then folded. Of course, grandpa doesn't really do much of this but he was the only one willing to allow his photo to be taken. Emmett, of course, always wants his photo taken. So here in our made up story I'm dealing with the tedious and never ending chore of putting away clean laundry. Of course, I don't realize that Super DiaperHead Baby has snuck into the laundry basket. His sleeper cape was in the wash so he wasn't able to fly about, but somehow he got there!

Of course, as soon as I found Super DiaperHead Baby then all of the challenges and frustration of doing laundry vanished as Super DiaperHead Baby's smile burst out of the laundry basket - with a few giggles that he had been able to surprise me. However, he was a little bit put out as his favourite sleeper/flying cape was not in this load. It was in the next which wouldn't be done until after his bedtime!

 

Bursting out of the laundry basket and scattering all of the nice and freshly laundered clothes all across the floor, Super DiaperHead baby made me giggle and laugh. And then we left the scene and probably grandma and mommy stayed behind to clean up the mess that we had made. It was time for Super DiaperHead Baby to revert back to his normal baby self, have a bath which he absolutely loves (on the other hand, Super DiaperHead Baby absolutely abhores water! It simply makes his costume look and feel horrible. His head becomes so heavy!), and then go to bed.

 

Stay tuned for the next episode - Super DiaperHead Baby Awakens!

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Bit by Bit!

"What is REAL?" asked the Rabbit one day ...

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you."...

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once ... or bit by bit?" (asked the Rabbit) ...

The Velveteen Rabbit by Margery Williams

Today Emmett is nine months old. He will spend most of this birthday as he spent his eighth month and seventh month birthdays, in ICU at BC Children's Hospital. When he comes home he will have another helium balloon to add to his collection (no, it won't be as big as the last one!) I almost typed that it's not because he's sick, yet that's not right. At the same point, he is NOT sick. He has a genetic disease. It is simply part of him. Emmett is! Rather, it is not because of a crisis that he is at BC Children's Hospital but it is the trial. He will be going through the fourth part of the ISIS Pharmaceuticals experimental drug trial today. If you are new to Emmett's Journey, you won't know that the babies who get the placebo will go through a sham procedure that mimics the real thing while the babies that get the real thing will receive a lumbar puncture. And it hurts.

It hurts Emmett. Alisha. Joshua. It hurts everyone who has had the privilege of holding and cuddling Emmett. I dare say it's hurting everyone who is reading this! Yesterday Emmett had a shot to prevent RSV (Respiratory Syncytial Virus) that can be very serious for high risk babies. It was his second shot for RSV and he didn't mind it at all. Then he had blood work done and he expressed his outrage. It hurt. Emmett. Alisha. Josh. All joking and fooling around aside - Emmett is a medically fragile baby and not only the world, but also the hospital, can be a dangerous place for him. Alisha has Emmett behind barriers fortified by disinfectant and she and Josh are virtually keeping him in isolation to ensure the safety of his health. Cold and flu season is terrifying for a family whose baby, on the best of days, is already struggling to breathe. Have a cough - we'll be vacating the area quite quickly. That is real!

And today is the fourth session since the beginning of October in this clinical trial of this miracle drug by ISIS Pharmaceuticals in which, after every session, we all are asking "Is It REAL!" Your prayers and warm wishes are coveted - this will probably happen around 12 noon Pacific Standard Time.

But no one will tell us! After all, it is a clinical trial. A blind test. A secret test. One that is taking place around the globe with babies who are dying from Spinal Muscular Atrophy Type 1. Just over a hundred babies get to take part in this test. Emmett is one of the lucky SMA Type 1 babies that was selected - he met all of the criteria. So he, in what can be a cruel world, is a lucky one. Of these lucky ones in this study, one third receive a placebo. Two thirds receive the real drug. A drug that is designed to regenerate the dying nerves in the baby's spinal column so that instead of their muscles atrophying due to the message not getting through, the muscles return to life. What also hurts is knowing that many babies and families don't even get a chance for this trial. And that friends - that have been made along this challenging journey - may not be getting the real thing. Is Emmett? No one will say, but like the Skin Horse who with wisdom saw everything that happened in the nursery, we are scrutinizing Emmett's actions in his nursery and believe it is Real.

Bit by bit, not all at once, we have been chronicalling his improvements in this blog. I've said before, babies with SMA don't improve and yet - is this real - we are seeing improvement. A return of movement and strength that Emmett demonstrated in the summer. And this week there were his ankles. His ankles are cute! There - I know you were waiting for me to say cute. Because I cannot help it. Emmett is cute! His ankles are cute. And this week he was rotating his ankles and feet. Not just up and down toe extensions, but rotating them. This was and is very exciting because this isn't a return of movement. It's brand new. Emmett has never before rotated his ankles. And then there's his frowny face - it's not because he's upset or hurt. It's because he can do it! We love it! Is it REAL? Does it HURT? Absolutely - but the Skin Horse and the Velveteen Rabbit will tell you so eloquently and, I'm positive with strong English accents, that it is so entirely worth it! 

Alisha and Josh are so strong and they so love their precious little boy. The hurt that they go through during every one of these hospital visits is beyond description. Like the Velveteen Rabbit, they'd do anything that they could to avoid these uncomfortable things happening and yet, right now, they are enduring the hurt that bites and tears at them while Emmett undergoes these drug test activities because, bit by bit, this is becoming real. And the words they heard that indicated that there may be as little as six months (yes, that's what they heard in August) for their baby with this diagnosis of SMA Type 1 are being pushed further away. It's getting brighter and the load is slightly easier to bear. Especially with so many friends and family helping to bear the load. Bit by bit, what appears to be a miracle is unfolding right in front of our eyes. One ankle rotation at a time. We will continue to pray without ceasing for this little angel!

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praying and sendi g loads of love your way!
Guest Comment 1 year ago
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We are praying for you all, especially Emmett. xoxo Aunt CA, Uncle J
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Excellent post Frank. Love and prayers to all of you. God bless you Emmett. Uncle Greg and Aunt Mary
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That was brilliantly written, Frank. I'd forgotten about the Skin Horse. Thanks for the reminder. :) - Richard W (again)

SDHB Returns!

Super DiaperHead Baby was working out in his private lair in the mountains. Even heros like Super DiaperHead Baby have to exercise to stay in tip top shape. Super DiaperHead Baby finds that moving his arms about on a regular basis is a great way to exercise. He doesn't really need the weights, they're more to impress the ladies than anything else. Like every other superhero, Super DiaperHead baby is almost always surrounded by ladies when he's out and about.  Here, however, in the calm and quiet domain that is his private lair there is no audience around (except the photographer and paparazzi, of course)! Without his superhero costume, he's just like every other baby with SMA Type 1. But with the costume - the diaper on his head, sleepers buttoned around his neck but otherwise flowing in the wind, and no pants but his bottom fully covered by a diaper - Super DiaperHead Baby can do anything he or you could imagine. It was about this time that he got a message (was it telepathy? a beacon shaped-like-a-diaper beamed into the sky? or does he just have a really good mobile phone plan?) that his mommy was getting swamped by paperwork.

Sure enough, Super DiaperHead Baby was right on the money because, through the superhero technology he has in his superhero lair (that's secluded in the distant mountains) he could see the look of frustration on his mommy's face about all of the paperwork. He sensed that she was about to give up and that is not something that he could allow. Super DiaperHead Baby knew that part of the problem was that daddy had the MacBook and mommy was once again forced to use the Window's laptop. Which can be frustrating even without bills and stuff like that.

Tossing the weights aside like they weren't even there (and in actual fact, they weren't there. It was a foam bar that was about 30 cm long and Emmett can toss it easily).

 

Blasting out of his secret lair, Super DiaperHead Baby flew around and over trees without even noticing the mountains surrounding him. He wasn't bothered by the weather or the music that was playing in the distance - although he prefers classical to hip hop or rap. Super DiaperHead Baby really doesn't appreciate rap at all.

But, flying at speeds that would bring tears to a mere mortal's eyes, Super DiaperHead Baby arrived at mommy's and as I drew in my head and was turning around, down the chimney Super DiaperHead Baby came with a bound.

 

 

Of course, Super DiaperHead Baby was travelling so fast that mommy didn't see or hear him coming. She was still bemoaning the fact that the MacBook would have made life so much more bearable. Super DiaperHead Baby had some kind of guidance system because he truly never looked where he was going. Instead he was focused upon ensuring that his photographer captured his best side! Yet, in spite of not looking, he never crashed into anything - except maybe a helium balloon or two. 

 

 

Super DiaperHead Baby's super power is causing everyone around him to forget their worries and concerns. Typically they are so caught up in enjoying being with Super DiaperHead Baby - giving him lots of cuddles and kisses - that they mess up his costume. But that is of no concern to Super DiaperHead Baby. He doesn't care what he looks like as long as he can make others smile and laugh. Which in turn makes him smile even more and, if you're really lucky, you'll get a small giggle out of him! This costume mishap, with the tab being out by his face, made Super DiaperHead Baby wonder if this would perhaps improve his aerodynamics while he's flying at super fast speeds?

 

His eyes, how they twinkled. His dimples, how merry! His cheeks were like roses, his nose like a cherry! Don't be deceived because he's chubby and plump, he speaks not a word, but goes straight to work. With the diaper tab pushed a little bit back from his face, Super DiaperHead Baby's work was done. Laying his finger aside of his nose, and giving a nod (more like side to side, cause he cannot nod yet), up the chimney he rose and then, sleeper cape flowing in the wind, soother close by, and diaper planted handsomely on his head - off he flew back to his secret, secluded, and very distant lair in the mountains!

Thank you, Super DiaperHead Baby! Until the next time!

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Super DiaperHead Baby has a wonderfully creative Grandpa! How delightful to share the fun. I can imagine Emmett was all smiles! We are praying for Super DiaperHead baby :-) and for all of you. Rebecca and John
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Thanks for sharing Emmet's journey with the church family - Precious little one!