September 2015

After a couple of days of wondering, the surgery to implant the G Tube will be happening. Emmett had an IV setup just within the past hour (since 6 p.m.) and apart from the IV will have no other feedings until after the surgery. We don't know what time it will be, except in the afternoon. We're hoping the early afternoon. Thank you for praying for our little boy!

Here's a video clip from Emmett that we took on Tuesday, September 1. Emmett loves an adrenaline rush and, like any grandpa and grandma, Pam and I wanted to make him smile. Since he couldn't effectively use his Jolly Jumper as it took two adults (one to bounce and the other to support his head), a support system for his head was made.  Using a Jolly Jumper Bumper Bonnet (part #401) and a Safety Harness (part #407) a system of rigging was set up that allowed Emmett some fun bouncing time. When Emmett recoups his strength after his hospital stay, I'm looking forward to him having another session with his Jolly Jumper. Huge thanks to John at Jolly Jumper for his interest and support in making this a reality! Thanks to Maria at the Hemming Hut who took my sketches and ideas and melded them together into a workable product.

Again, this video is from a week ago!

 Emmett got a pass! Emmett got a pass! After several days in a hospital, Emmett - with a pass in hand - and parents plus Roger and Rhonda (his Willms' grandparents) and his Uncle Ben, left Emmett's Place and went outside where they had a walk in the park on Saturday. Sunday, Pam and I went for a walk with Emmett and his parents around the hospital neighbourhood. Emmett, bundled up with a wool touque, sweatshirt, red pants, and with a warm blanket close by, was able to be disconnected from the monitors and go out exploring - with the mandate that he was back for his scheduled feeding times. No issue with that - Alisha made sure he was back on time. She follows the rules (didn't get that from me!).

The doctors have told Alisha and Josh that Emmett will rebound after the Gastric Tube (G Tube for short) is surgically placed into his stomach. That will be good because since his episode last Wednesday when he stopped breathing, Emmett has been hospitalized and his strength has been drained. Apart from pulling out his feeding tube the other day, his arm movements have reduced. His smiles have been given out more selectively. He has an infection - not sure what - and has been using all of his strength to fight that. It is possible that the Nasal-Gastric tube (or N-G tube) is causing some of this stress? Or maybe it's something that he got along the way? Whatever it is, this is a concern because they may postpone the surgery to insert the G Tube if the medical team believes that it will be too challenging for Emmett to face surgery. Obviously, after waiting in the hospital all weekend Alisha and Josh want the G-Tube placement to happen. This operation is a normal step for a baby with SMA Type 1. It also means a change in the bonding time between mom and son.

Huge thanks to the Meal Train at Alisha and Josh's Church. Curried Yam and Apple soup. Raviolli. Chicken Stir Fry. Mexican Tamales. Huge thanks to the folks who have made donations to Families of SMA Canada Society (curesma.org) and to the donations that have been made specifically for supporting Emmett. God Bless you. Undoubtedly the care and concern of those who know Alisha and Josh and Emmett is like a giant hug! Those of you making donations and you don't even know the family, wow! Thank you. We are, simply, speechless. Alisha will tell you that doesn't happen to me very often! 

Our hearts were filled to overflowing when we got an email from Angel, who has a foundation called "Hugginz by Angel". This young lady wants to sew a blanket of love for Emmett. Her mission, fulfilled through her foundation, is to wrap critically ill kids and special needs kids in warm hugs to comfort them. You can find Hugginz by Angel on FaceBook. Thank you, Angel. You and your family are a gift from God.

A week makes a huge difference in a little one's life, and we're looking forward to a week from now when we can share the positive difference in Emmett after his surgery. Right now we are waiting, just as Dr. Suess describes in his book "Oh the Places You'll Go". Waiting is challenging. So if you have a moment to relieve some of the tedium that Alisha and Josh experience from time to time, share a comment here on the blog in the comment's section. Or send them a note on facebook or an email. Any posts or emails that come to me, I forward them on to Alisha and Josh. And Emmett. We all love to read to Emmett. Or to just smile and stare into his eyes, like Emmett's uncle Ben is doing.

Spinal Muscular Atrophy, Type 1 is not a walk in the park. It is, quite honestly, Hell. It is even worse than your worst nightmare, but, in the midst of all of that turmoil and pain, there is peace that defies description. There is a firm backbone and resolution to fight and do whatever is possible to improve Emmett's life. There are bright moments. Like Emmett's smile. Like waking up to a full diaper - which means he's beating the infection. Like a walk in the park! There will be challenging moments, but Alisha and Josh are working so hard to ensure that there are many bright moments too. Emmett is feeling much better today. That is a blessing. Life is a walk in the park when our little boy is happy and feeling good!

Emmett will be staying in his room, dubbed Emmett's Place, at BC Childrens' Hospital until mid-week. It will probably be Thursday before he is able to return home. On Tuesday his Nasal-Gastric tube will be replaced with a Gastric tube. This is a surgical procedure and he will spend at least Tuesday night in ICU. There was a small chance that he could have come home for the labour day weekend, and obviously Alisha and Josh wanted to bring Emmett home. They were a bit concerned that they hadn't received results from the sleep study yet, but were confident in their ability to feed Emmett with their newly acquired skills of using the Kangaroo feeding pump and the N-G tube. But it was Friday late afternoon and the hospital didn't have the right feeding pump for the current N-G tube so they couldn't leave. Emmett cannot be fed without that pump. To top it off, last night after his grandparents all left Emmett managed to grasp the N-G tube and remove it from his nostril. Alisha is pretty sure he realized that once he started, this was not something he should have done, but since he is a task oriented little boy he finished the job! 

The N-G tube was easily replaced - well, if you were Emmett or Alisha or Josh it wasn't easy. Don't try this at home, but imagine sticking a flexible tube up (or is it down?) your nostril into your stomach. Emmett would say it sucks! And he is an expert on sucking! From this point on Emmett will not be taking any nourishment by mouth. We knew this would happen but really thought it would still be months - at least weeks - away.

Emmett's Place was very crowded last night as Roger, Rhonda, Pam, and I joined the room. Of course, every now and then a nurse entered the room. Earlier in the day a herd of doctors (is herd the proper term? I understand it was a whole bunch so herd it is) crowded in to observe Emmett, make diagnosis, and probably to learn about Spinal Muscular Atrophy, Type 1. This is a teaching hospital.

Alisha and Josh went for a long walk around the hospital's neighbourhood while the grandparents stayed with Emmett. This was after a meal of hearty, Mennonite soup and bread. Thanks Aunt June - delicious. Obviously, Alisha and Josh aren't eating properly. Aren't sleeping properly. And apart from the hospital to hospital transfer, Alisha hasn't been outside of the hospital since this crisis began. Josh, probably only to feed the parking meter. So a lovely walk through the local neighbourhood was good for them.