Daily/Weekly Thoughts

January 2018

Saturday Morning Update: Day 2

At 1 a.m. this morning (Pacific time) Emmett was moved from Emergency to the ICU. In typical form, he would just fall asleep only to be awakened in order to get checked. It's all par for the course in a hospital. His lungs are still relatively clear. He did get deep suctioning once over night but that was all. His fever seems to have broken. When he could sleep free of interruptions he wouldn't, of course.

We will add updates here as they are available.

12:30 PST Update

Emmett has RSV - Respiratory Syncytial Virus. It is a very challenging illness for a medically fragile child. RSV will likely affect every child at least once before they're two. Well, Emmett will be three in March and this is his first bout of RSV.

RSV's first symptoms are very similar to the common cold. Fever, reduced appetite, runny nose, cough, and wheezing. Healthy people just assume that they have a cold and in a week or so they're better.

Emmett is more comfortable today. His bi-pap is being supplemented with oxygen. Josh writes that they now just wait while Emmett fights this virus!

Comments

  Validation Code
Guest Comment 2 years ago
Site Visitor
+1
Poor Comment Good Comment
We are praying and will continue to pray - for sleep and healing for sweet Emmett and for peace and rest for Josh and Alisha as they watch over Emmett.

Emmett has a Bug!

Emmett has had a rough 18 hours and is now in BC Children's Hosptial.

It is now Friday evening. He perked up for about half an hour while watching Daniel Tiger's Neighbourhood and the thought of a van ride - which means Woody the Cowboy, Buzz, and all of the rest of the Toy Story characters. Of course, Alisha and Josh absolutely love Toy Story. It has been burned into their memory! Even the sequels. We need a new Toy Story simply to give Alisha and Josh a break. That perkiness didn't last very long. He is sick.

We will give you updates as we are able. Right now Emmett, Alisha, and Josh obviously covet your prayers and well wishes.

Hard to say exactly what it is: he has a fever, the chills, and his chest is very sore. Right now he is in the right place and Alisha and Josh are with him! In the blink of an eye he went from being fine to being ill.

Emmett has a bug. It is probably one of the ones that Alisha and Josh work so diligently to protect Emmett from getting. We know that some people think that we go over the top with our reactions and that if we just let the kid be that his immune system would toughen up. But it won't. Seriously. Emmett is medically fragile. It is realistic to assume that he will always be a very fragile kid. An atypical kid. 

A typical kid gets a bug and keeps on playing. Mom's and dad's might wipe their kid's nose every now and then, but life goes on. That same inconsequential bug gets Emmett. And he's down and fighting for breath. His usual non-stop chattering has stopped. His bi-pap machine is on around the clock. He barely moves and isn't interested in his toys. His oximeter - yes, he has his very own oximeter - is on and monitoring his heart beat and oxygen levels. The alarms don't go off very often unless he is sick. Then we hear them. And everyone goes running to help him - even faster than they respond in Gray's Anatomy. (BTW, I don't really like Gray's Anatomy but it is better than The Good Doctor. Goodness, Doogie Howser, M.D. is/was better than The Good Doctor!) His suction machine, which is never more than a metre or two away from him, gets an overtime workout. The spare suction machine is not too far away.

So if you have the flu or a cold, you will understand why we give you wide berth. See me using hand sanitizer after shaking your hand - don't take offense. I'd do the same after shaking my parent's hand. You see, I don't want to be the one who carries that minute little bug to Emmett.

Comments

  Validation Code
Guest Comment 2 years ago
Site Visitor
+1
Poor Comment Good Comment
Praying for Emmett to get better, for the doctors and nurses to help, for Alisha
Guest Comment 2 years ago
Site Visitor
+1
Poor Comment Good Comment
Love to all. Just said a prayer for all of you especially Emmett and will keep praying. Weíre thinking of you. Thanks for the call yesterday Pam.

Crushing A Huge Milestone!

CRUSHING A HUGE MILESTONE!

When you're told that your child will never be able to support the weight of their own head and never, ever be able to sit up on their own it is a crushing blow. Even though you're already sort of prepared for it because you know that your little one has missed so many milestones that a baby usually reaches. Fast forward a couple of years, a number of doses of the wonder drug Spinraza, a ton of prayer, endless hours of support, encouragement, sometimes tears, and here we are. Emmett is Crushing this milestone! Look at this little boy sitting by himself with no pillow supports holding him up. This is absolutely a first. Emmett has sat on furniture with back support. He has sat on the floor with lower back support. This is the first time he has been sitting with nothing supporting his lower back. Little ones with Spinal Muscular Atrophy - Type 1 simply do not sit on their own! Of course, there are pillows not to far away to protect him when he falls. Because he will fall. He describes falling as 'going bonk' on his head! And then he laughs. Spinraza is a miracle drug - it's like Emmett has received a touch of God. A drug that can rebuild the nervous system so that messages can move between the brain and muscles absolutely is a miracle.

Emmett is wearing his custom back brace in all of these photos and video clips. This back brace, visible in this photo, is a recent addition to Emmett's lifestyle and it is very important to straighten his spine and reduce the risk and effect of Scoliosis. This brace does not hold him upright - it only supports his spine. This in turn makes it more comfortable for him to sit. 

This brace is fitting to Emmett's torso. It's a two piece unit with the first piece fitting around his torso. The second piece goes around and has velcro straps to hold it in place.

When sitting alone Emmett's core muscles are doing all of the work to hold him up. You can see that when he loses balance then he's going to fall over. The brace is not holding him up. 

Of course, there is something else at play here. Emmett is focused upon a YouTube video. As he rarely gets to watch TV that is a huge attraction and absolutely makes him work hard to stay sitting so that he can watch. Fortunately for all of the adults, Emmett has left Paw Patrol behind and Daniel Tiger is now the number 1 video attraction.

Of course, Emmett's custom wheelchair is getting even more use now that the back brace is here. Emmett found it too uncomfortable to sit in for any length of time as his upper body would compress the lower portion of his torso. With the brace, Emmett is sitting in his chair for up to an hour a day. First thing in the morning he asks for it! This video was taken after about 45 minutes in the chair so he wasn't too eager to demonstrate how he can move it by himself but he certainly can. Backwards is best.

Comments

  Validation Code

CTV News Clip - Spinraza for all

 

Emmett loved seeing himself on TV. He is a very bright and alert little kid, but I really cannot say that he knew that he was on the provincial news. He did, however, absolutely want to have the clip reviewed and watch it over again and again. He also recognized some of the other kids in the video - some he's met before while for some others this was the first time. 

Emmett fits the recommendations that are currently being reviewed by local provincial government here in B.C.  This is not merely a disease that affects children. Type 4 is adult onset Spinal Muscular Atrophy. Type 3 may not be identified until into the teen years - although it is usually evident at a much younger age. Then there are Type 2 youngsters who are identified early by the fact that, while they can sit up, they are unable to walk. As you can imagine, there are a range of ability within each of these types. Emmett is Type 1. Not all Type 1 individuals will meet the narrow recommendations.

The teacher (and perfectionist) in me wants to clarify. Kids and adults with SMA have perfectly fine muscles. The problem is that the message between the brain and the muscles is not transmitted. Thus the muscles atrophy. This drug, Spinraza, essentially creates a pathway that allows this message to get to the muscles. This is why this drug is so fantastic. And so fantastically expensive. But when governments, most importantly our Canadian government, around the world start discussions with Biogen, they will be able to get the price to a much more realistic figure.

This is why we need and want you to write your local MPP and your province's Minister of Health. See yesterdays post for that information.

Emmett has a couple of cameo's in this clip. Watch for him! He was asked for an interview but he declined! He just wanted to play!

 

Comments

  Validation Code