A huge thank you to the Getty Owl Foundation. Emmett's name was submitted to an online give-away specifically for families dealing with Spinal Muscular Atrophy. The Getty Owl Foundation was started by parents of a little girl who has SMA - what a fantastic outreach and global service they are providing.
They realize that families with children with SMA are tied to their medical equipment - effectively tethering them to their power source. Alisha and Josh were certainly not sure what their summer would look like. If you know them, you know that hiking and camping in the B.C. mountains is a big part of their life. They knew that a little one would change that, but with Emmett's complex medical equipment it just couldn't happen apart from very short excursions.
Then they saw this give away for a back-up power system to be able to greatly increase the tether. And they are one of six lucky families to receive a battery/inverter system and a getaway quilt to allow them a greatly expanded movement range. We so appreciate the practical way that Getty's family is reaching out to help other families.
Emmett is fortunate in so many ways with his medical care and the great supports available to him in our wonderful province of British Columbia. As Getty's parents point out, there are many out of pocket expenses that add up and are a burden. This device is one that we've talked about but just was not going to happen. And now it has!
Getty Owl Foundation - You Rock!
June 9th - Emmett is 15 months old!
Alisha's Reflections Of The Past Month
"Ohhhhh, he just gave me a kiss on my cheek for the first time!!! You can put that in too." Alisha exclaimed, as we were discussing this blog post just as Emmett, who so far has really only done air kisses, planted one on her cheek.
The moments with Emmett are so exciting. You never know what might be next. Anything in quotes in this entry will be Alisha's words and thoughts - probably typed by her also. There are the typical youngster moments like Emmett filling his diapers and just picking him up means that you will be covered with poop. Then there are the moments when you just want to be like a normal person and take your baby out to mingle with other parents and youngsters - but ... the risk of an infection is simply too great so when you do go out it is with a laminated sign attached to the stroller asking people not to touch. Because people just touch babies and toddlers. There are moments like a plane ride to BC Children's Hospital - an exciting moment that no one wants to experience. And there are moments that just seem to take forever and that no one else understands. There are moments like watching Emmett intently focus upon a bug that is crawling on the grass near him. Seeing him move himself about the pool with so much more activity versus when he is on land. Listening to him laughing in perfect timing to a comment that he's just heard. Seeing him wide awake one moment and then peacefully asleep mere moments later - without any fuss as his bi-pap apparatus goes on. Seeing his techni-colour smile when someone he knows enters the room! And then there is a first kiss and that is just absolutely overwhelming. That is exciting.
Sometimes boys just want to cry!
May 9-June 8 Memories:
"Your Great Aunt Debbie and cousins Julia and Jason came to visit. They were here over Mother's Day and you had a busy day! We had breakfast with Grandma and Aunt Katie, went for lunch at Grandma Rhonda’s, and then had supper again at Grandma Pam’s with the Dippels."
"Unfortunately you weren’t feeling well (This was early in May) and you came down with your very first cold ever. That night you had a low fever, two vomits, a high heart rate, and a very restless night. In the morning you had trouble clearing your throat after suctioning so I called the doctor, who suggested we go to the ER. There we spent hours waiting with you, while you were hooked up to all of your machines. When you were admitted they realized that they could not have a patient with Bi-pap – so had to transfer you to Vancouver."
"It was already 8 p.m. by this time and you were so tired. An ambulance team came to pick you up but they were not a paediatric team so they refused to take you. Then the infant transport team had to come get you – in an airplane! Your first airplane ride, but you slept all the way through it."
"In ICU at Vancouver you already were doing better, but they kept you for two nights to make sure. They confirmed that you had a cold. We are so thankful that you are not afraid of the hospital and that you like all of the staff there! Dr. Selby thought it might take you about 4-6 weeks to completely recover, but we are thankful that it only took about 3! You had to spend a lot more time on bi-pap."
"Grandpa Frank was spending two weeks in Ontario while you got sick, but was very happy to see you when you got home!"
"May 13th was a milestone. It was the last time getting mommy's milk through your g-tube. Now you’re completely on your paediatric formula."
"You got a custom made seat." It has a wood base that allows you to have a variety of reclining positions. The padding and covering were custom fit for you. They took measurements and then made and upholstered it in a van parked in our driveway. You love sitting in this chair. You want to be upright like everyone else, but we have to be cautious as you get congested. "But we've gone for several days over the last two weeks without the need for suction assistance!"
"Last week you got your first ear ache. You were miserable."
"You had your first eye doctor and your first dentist appointment last week. Your eyes look great. Your teeth are pretty cool but you don't have as many as other fifteen month olds. Is it because you don't chew?"
Your dad had his 28th birthday and that was exciting. Soon you will be saying da-da. You've been saying momma for a couple of months now.
In the backyard reclining in the swing, with one foot dragging through the grass! Fun sensation.
"On Tuesday you had a great clinic day at BC Childrens Hospital. Your specialists (neurologist, respirologist, orthopedist, nurses, and therapists) were all very impressed." You showed them how you can clear your own throat - a big step. You still need help, but there are times when all by yourself you clear your own throat. And there were many other things you showed them. Of course, Emmett does have wrist braces to stretch his hands, as they're turning in.
This month had many milestones!
"Got to try out a power chair and drive it around the facility!" We know some of you saw the picture and thought it was Emmett's chair, but it is not. Soon we hope he has something like that.
"Emmett can laugh on command!" It is so funny and his timing is also amazing. It is like he already has a sarcastic sense of humour!
"Emmett can YELL on request!" This is pretty cool.
"He can blow kisses. Make squishy faces. He loves the song Head and Shoulders. He knows and will touch eyes, ears, mouth, nose, finger and toes. And knees. He knows elbow and tongue too." Of course, he knows tongue. And since he has a sarcastic sense of humour, I'm sure he'll be putting this new found knowledge to use soon.
Emmett can hold his elbow up off of the ground (while lying on the floor) for long periods of time.
"Emmett balanced his head - holding it upright - for three minutes. He's learning to better balance and support his head every day." Believe me when I type that this caused more than a few tears. Holding up his head is a literal miracle.
"His grip is getting strong and he can hold onto his toys (when he chooses too) when they are moved around."
"He can sit in his stroller or chair for longer and longer periods of time without getting choked up." Of course, we tend to get choked up watching this!
"Emmett only uses his soother at night or maybe during a nap. He doesn't want it while he's awake!"
Emmett's Favourite Things
"Balloons!" Some balloons last forever while others barely at all. His almost new sea turtle balloon is already losing a ton of altitude.
"Bubbles!" Emmett has a powered bubble machine and loves getting splattered by bubbles - and especially loves if they land intact near enough that he can swat them!
Mommy and Daddy, not so many kisses! "Emmett doesn't like too many cuddles or kisses." He's a big boy now.
"Poking at bugs. Playing with branches."
"Being the centre of attention!" It's tough having a medically fragile little one. More than anything Emmett loves a crowd and, especially, being right in the centre of that crowd. Recently Emmett was at Mill Lake Park where the Abbotsford Run For Water took place. The crowds, the noise, the colours, and the atmosphere was so much fun for Emmett. A huge thanks to everyone who interacted with Emmett but respectfully gave him necessary space!
"Dropping toys on the floor over and over and over again. It's a great game to watch mommy or daddy have to pick it up again and again!"
His favourite song is now "If you're happy and you know it ..." Then insert things that he can do (wave hands, laugh out loud, wiggle fingers, blow bubbles, make a monkey sound, ...). Emmett loves interacting.
"Swinging in the backyard hammock" which, Alisha, is really a swing and not a hammock.
"Backyard pool time. At first it was not one of Emmett's favourite things as it was cooler than the bathtub or the rec centre pool - but it's so much fun that he adjusted quickly!"
Literally, I cannot believe it! Emmett has never been able to support his head and yet, over the past month, we have seen him demonstrating neck muscle strength that we have never seen before. From tummy time as a three month old right past his first birthday. Then at the end of April, while reclining on his mom's chest, he lifted up his head to look at her. And now what you see in this video clip, taken on May 31st.
That's just incredible.
Worried that Emmett hasn't had a new balloon for a bit? That's because we haven't shared this awesome sea turtle balloon that Emmett has been playing with for the past couple of weeks. It's pretty cool!
Emmett still loves his Jolly Jumper! And his posture is so much better than a few months ago.