I know you’ll all be jealous, but I just had to share my new phone background wallpaper.

You’re welcome!

Today was the day for Emma’s second Spinraza loading dose and Emma was really excited! (not really)

Mark and Erin’s insurance provider, Aetna, last week notified them that they had approved a full 12 months of Spinraza treatment for Emma so no more worrying about that.. for a while.

While in the waiting area, Emma met another 8 month old SMA Type 1 baby named Audrey. Audrey was at Children’s with her mother, Stephanie, to get her final (fourth) Spinraza loading dose. After today Audrey goes on maintenance and only needs a dose every three months.

Audrey with her Mom, Stephanie with Emma and Erin.
Notice the matching hair-standing-straight-up hair-dos.

Stephanie shared a lot of positive stories and showed us different toys that Audrey likes to play with. She also demonstrated a bunch of yoga moves that Audrey does to help stretch and strengthen her muscles.

Then it was time for Emma to go with Erin and Mark to the pre-op area.

Mom and Dad got Emma ready, then were kicked out as Emma was prepped for her treatment. Fortunately, Grandma and Grandpa were there to help. They all went up to the cafeteria and Erin even bought Grandpa his lunch!

This second dose for Emma was quite a bit easier on the family than the first one. The only small issue was when the nurse was giving Emma her lidocaine shot. Just as the needle went in Emma let out a huge sob and popped the needle out. The second try worked fine and Emma was ready for her intrathecally administered Spinraza dose.

You may remember that the procedure is to remove 5 ml of Emma’s cerebrospinal fluid (CSF) and then inject 5 ml of the serum directly into Emma’s CSF over 1 to 3 minutes using a spinal anesthesia needle. (Aren’t you glad you asked?)

After the treatment she got a bit of Tylenol which worked wonders last time. After a short while in the recovery room it was snuggle time with Mom.

Two hours of observation, smiling, singing and a bottle and we all headed for home.

Emma’s third loading dose is scheduled for Monday, November 27… just after the Thanksgiving Day holiday.

And BOY! Do we have a lot to be thankful for this year!

Emma in her new Aqua Therapy swimsuit.

Emma enjoyed her first water therapy yesterday with her new friend Krista. She did really well and showed off a bit with lots of kicking… something we don’t often get to see on dry land.

Emma and her Mom were in the pool with a bunch of adults with different abilities and their therapists. Emma watched and smiled at everyone and by the end of the session had won everyone over.

The only issue was Erin’s realization that she needs to trade in her “beaches of Hawaii” swimwear for some new aqua therapy outfits.

Emma had a BIG nap when she got home and then did at-home physical therapy in the evening with Mom and Dad and Nicole.

Whew! Tires me out just thinking about all that exercise!

Today Emma got these beautiful flowers from her Great-grandfather, Papa John.

All the way from Canada!

As you can tell, she was very impressed as she LOVES flowers.

Emma’s Auntie Mimi (Amy) whipped up a bunch of these cool “EmmaStrong” wristbands.

They’re the rubbery type of bands all the cool people wear.

You too could have one of these bands. All you need to do is add a donation to Emma’s GoFundMe campaign.

Then send Amy an email at amy.t.walsh@gmail.com with your mailing address. You’ll get your wrist band in the mail in a week or so.

We also have a distributor in Ontario handling all the Canadian orders.
We’ll handle the HST.

Amy has only a limited supply so hurry and order yours today!

(Not available in stores or online anywhere else!)

You may remember the box of goodies from CureSMA that Emma received last week.

One of the few things that the CureSMA organization requested is that we send them a photo of Emma with her stash of items.

Thought you’d like see it all… especially Emma grasping the CureSMA.org flag.

Emma’s Mom had a business commitment today so Grandma & Grandpa got to look after her (Emma, that is).

She had an early big lunch, then a nice long nap and then played with Grandma on the floor for a while.

It may just be our imagination or our desperate search for improvement, but Emma seems to be holding her head up better, holding and grasping things better and just overall seems stronger already.

Here’s hoping.

Many of you have been asking for a nice photo of Emma that you can use for desktop wallpaper, phone backgrounds, prayer circles, etc.

Emma’s mom and grandma sorted through their “couple of shots” and decided this one would do quite nicely.

Enjoy!

You’re welcome!

Emma’s aunt LeeAnn and her little cousin Owen have committed to run 3 miles every day until Emma’s first birthday.

Well, LeeAnn will be running and Owen will be providing inspiration and navigational support from his stroller.

You can read about their commitment and request for pledges for Emma on their website.

You can keep up with their progress on their News link.

Thanks Aunt LeeAnn!

Mark and Erin’s health insurance carrier, Aetna, hadn’t yet approved Spinraza in time for Emma’s treatment today. So Biogen, Inc., the manufacturer of Spinraza, donated the first dose and overnighted it to Seattle Children’s Hospital in time for Emma’s treatment today.

Mark and I actually considered whipping up a batch of Spinraza ourselves since they put the recipe right on the side of the box.

We decided against it… you know… patents, and all.

After Emma was checked in and prepped Dr. Natarajan and NP Alexis Russell took Emma into the OR and performed a lumbar puncture to administer the 5 ml dose. Nurse Russell hit the spot on the very first poke (which is a rarity for babies and first dosages). They delivered the first loading dose of Spinraza intrathecally (injecting it directly into Emma’s cerebral spinal fluid).

Emma will have her next loading dose in 14 days (Nov 14); a third one in another 14 days (Nov 28) and her final loading dose 30 days after that, on Dec 28.  After that she’ll get maintenance doses every 3 months.

There was a bit of a mix-up in notifying Mark and Erin that Emma was waiting for them in post-op, but other than that things were went very smoothly. It wasn’t long before mother and child were re-united. Day ONE on Spinraza.

There was only one, slight side effect from today’s activities…..

 

 

 

 

 

 

 

Emma became a cute pink flamingo… just in time for Hallowe’en.

Thanks to all of you following this for your prayers, kind thoughts and unbelievable support of Mark, Erin, Emma and the family.