Emmett's lumbar puncture proceeded normally on Wednesday. All was good and Emmett was back home before supper. It was sort of an exciting trip because we stayed at a hotel Tuesday night with an outdoor, heated swimming pool. We had good weather so we got into our bathing suits and it started to rain. We got down to the pool and it was pouring, but we went in anyhow. The rain was cold but the pool was warm. But as soon as we got in it was like a torrential downpour with hail-like stuff falling. We got out fast!!!
But what was fun has changed today. Emmett has not bounced back like he usually does (we have quite a track history to base this on as he has had either 23 or 26 lumbar punctures). He's in pain and quite uncomfortable. With some medication he was feeling well enough to read a story - this also distracted him from how he was feeling - (see the video story below) but by supper time Emmett was on his way back to BC Children's Hospital. He is being observed now.
Update: Friday morning at 8:41 and Emmett is scheduled to get an MRI sometime today.
Update #2: Friday morning at 11:30 PST. Prepping Emmett for the MRI. He's not a happy camper. The staff at BCCH have set him up with ear plugs, a monitor to watch his favourite show, and talked him through what is going to take place. It's a lot to ask of a little guy!
Update #3: Friday afternoon at 1:00 PST. Emmett watched a Disney movie while the MRI was happening. Josh said he was like a statue he was so still. And the little boy who doesn't even like the sound of a vacuum handled the noise of the MRI equipment well - good thing for video and headphones. That is one step complete - now to wait for the results.
Update #4: Friday evening - Emmett was discharged and is now home in his own bed. The MRI showed a small leak at the puncture site which has already sealed itself. That's what caused the pain. He's a different little boy already. He slept most of today. Thank you for your support and prayers. It's a good thing that it's another four months until the lumbar puncture. Sure hope that it will be uneventful!
Note: Set aside 15 minutes to watch this video.
This is Paper Bag Princess week:
If you have been following Emmett's Journey for a while, then you know a bit about his parents. They are an absolutely amazing couple who are doing everything that they can to be the best parents that they can be. It is quite possible that they may be busier than most parents of a couple of kids. They just happen to have a youngster with a rare disease. A genetic disease called Spinal Muscular Atrophy, Type 1. Did you know that Monday, February 28th is Rare Disease Day. Here's hoping that this blog helps you to be a bit more aware of the challenges that families face as they raise a child with a rare disease.
For example, on Tuesday the accessible van will be packed up with Emmett's power chair (by the way, Emmett no longer sits in a child car seat, but he sits in his power chair. We went to the Sidewinder van conversion showroom/garage/fabrication shop and not only did we get a tour but they showed us how to properly use the special wheelchair seatbelts to keep Emmett secure in his van while staying in his power chair. We will be taking the van back to Sidewinder in a month or so to get some maintenance done on the wheelchair bay. We need to keep it in tip top shape.) but also two suction machines, his bi-pap machine (unlike a c-pap machines one way function, a bi-pap blows in but also pulls out! both ways), his food pump, his back brace, his AFO's and his bathing suit. There is a bunch of other stuff for sure, but the most important will be his bathing suit so that he can go swimming. Oh, and we cannot forget his bunny, Floppity Moppity Bunny.
While there will be swimming and fun, all of the packing of this trip is so that Emmett can get to BC Children's Hospital for his next lumbar puncture and injection of Spinraza. This happens on Wednesday, March 2, 2022. Did you realize that Emmett was one of the first kids in Canada to receive this rare drug for his rare disease. In fact, when he started getting this drug it didn't have a name and it was a blind study that involved just over 120 kids from around the world. It was an experimental drug. And it worked. And it keeps on working and a few years ago was approved for use in Canada. And the BC government has just approved a second drug that can work with people who have the rare disease known as SMA. All because people are aware that individuals with rare diseases need our support. And we need to support the parents and families of these individuals with rare diseases - because the workload is immense.
But in addition to Rare Disease Day. In addition to Emmett's 26th Lumbar Puncture. It is Alisha's birthday! Today, February 27th, 2022.
So today, or when you read this, reach out to Alisha via any means that you have to wish her a happy birthday. I'm not going to say much (and I'm absolutely not saying her age) because I did not ask her if I could write this blog post and I know that this will she will be slightly embarrassed, but this amazing woman who is so dedicated to her family has to be recognized today. She won't tell you about everything that she does. To her, she is doing what any mom would do. And that is absolutely true. But as her mom and dad, we see her going non-stop with both of her boys and do not even know when she sleeps. We love her. Happy Birthday, Alisha. You are an amazing mom and daughter! Love You Forever!
Note: the top photo of Alisha and Emmett is from quite a few years ago. The lower photos are: Alisha and Emmett; Alisha and Theodore; Theodore and Emmett.
Thank you for the tremendous support for the Canuck Place Children's Hospice hosted by the Orange Hippos, AKA Emmett. $3775 was raised and this amount was tripled by corporate donors. The thermometer should have been demolished as the goal was $1000 - but it proved to be very flexible.
Emmett also is sharing his hippotherapy videos with Valley Therapeutic Equestrian Association to present at their Open House. Emmett will continue with Hippotherapy after the holidays. He already has a supply of carrots for his horse, Fiona. (and by his horse, we mean the horse that he rides when he is at a session. Emmett does not have his own horse!)
Emmett has been out at soccer again - and it is great to see how his skill has improved over the fall. We also were able to test out the "new to us" power chair. Emmett gave it two thumbs up. Huge thanks to Sportability BC for making this time and space available!
We hope that you have a very Merry Christmas. Emmett's special project was gifted to Lynne, who is not only one of the donors to the Canuck Place fundraiser, but she's also one of the volunteers at hippotherapy.
Rain has been a serious topic of discussion in BC all fall. You might remember Emmett's October entry into weather reporting. If not, you can see it here.
BC has just finished a third 'Atmospheric River' in less than 2 weeks - and this is after one of the wettest fall seasons on record. Blog readers will remember that our October camping trip was almost entirely drenched in rain. We didn't have this rain gauge up and running for the first atmospheric river. The second one that hit was coupled with high winds and that toppled the rain gauge. But we captured the most recent one (for the record, the first was the worst, the second was not good but it was not as bad as the second one. These weather updates focus on this most recent atmospheric river. By the way, atmospheric river is a term coined in the 1990's although it's really come to everyones' attention this year.
Literally a ton of rain falling in a 24 hour period - and this has been happening over and over again - has been what has devastated BC. In Emmett's words, "Grandpa Roger and Grandma Rhonda live on a mountain that has been turned into an island.", that is because the roads to their home were literally under more than a metre of water.
Some have asked how we are and that is greatly appreciated. Our homes and families are safe. The Sumas Prairie flooding is about 3 kilometres from us. The elevation in those areas is approximately 1 metre above sea level. Emmett's family live at elevation levels from 40 to 50 metres above sea level. We also live on relatively level ground thus are not at risk of mud slides - which have been devastating in the mountain areas throughout BC. The trans Canada highway at Abbotsford has been underwater. Mud slides, washed out bridges and roads, and flooding has literally caused the evacuation of complete cities and the complete disruption of all road and rail traffic to the West Coast. For us, we move on relatively normally. But we have friends who have lost everything. BC is under a state of emergency.
We hope that this helps you understand a bit more about the floods in BC - an internet search will provide many more shocking details.