Tuesday, June 30, 2009

Surgery Date

Can't believe it!!
Surgery date is Friday, JULY 10th!
Ummm... that's next week.
Don't have time to get nervous or scared...
Only excitement going on in the StJean house!
Into the Stollery Children's Hospital, July 10th with hearing aids...
Out on the 11th with
simultaneous bilateral cochlear implants!!
Can't believe how fast its gone...
then the real waiting begins for the
Activation day
about 4 weeks later...
Send your thoughts, prayers and strength our way
July 10th marks the beginning of our little girls CI HEARING journey!

Wednesday, June 17, 2009


It's been six weeks since she was last weighed and measured.
Here it is!!
Height- 75cm / 29 1/2" (up 1 cm)
Weight- 7980g / 17 lbs 9 oz.
(this is the most she's ever gained YOUPI!)
Head Circumference- 43 cm
I couldn't believe my eyes when I saw 7980g...
She's finally over 17 lbs!

Monday, June 15, 2009

2nd Round of appointments

We returned to Edmonton last week to meet with the surgeons, with Doris the CI Guru at the Glenrose Rehabilitation Hospital and we also had a Neonatal Follow-up appointment at the Glenrose.

This is it, we have decided to go with simultaneous bilateral implants. And... we have good news... our surgeon told us she has two dates available in JULY for Sienna's CI implant surgery and that we will know this week what day it will be. WOW... we were hoping for before her 2nd birthday, August 28th, but this is awesome. Hmmm.... July... that is just around the corner, so many emotions are running wild...

anxiety, nervousness, fear, but most of all excitement.

Excitement because we can't believe this is happening so quick...
Excitement because we are opening so many doors for her...
Excitement because she will finally be able to hear her older sister's beautiful singing voice...
Excitement because she has been without "ears" for too long already...
We are so lucky to have the Glenrose CI team doing such a great job at looking after our little Sienna.

I found these pictures on Alexander's blog, i am thankful for my ears, and thought you would be interested to see exactly what it is. I actually just copied what Alexander's mom wrote as she explains it so well.

"The implant is more like a powerful hearing aid, although it is very different from a hearing aid. Instead of simply amplifying sound, it creates signals that the brain interprets as sound, making it ideal for people who have little or no hearing. Cochlear implants use a device called an external speech processor, worn outside the ear, to capture sound and convert the sound into digital signals. Those signals are then sent to a surgically implanted electronic receiver inside the head, which tells the implant to stimulate the electrodes inside the cochlea (inner ear). The brain then recognizes these signals as sound. Those that are qualified for an implant must have a certain degree of hearing loss (meaning "bad") or hearing aids will not help them communicate in society. "
This is the internal device
which will be implanted
inside each side of her head.

This is external part which will
stick to the
internal piece
and there is the processor thats sits
behind each of her ears.

Cochlear implants is not a cure for deafness. Sienna will always be deaf however it is a "tool" to help Sienna communicate and live the best life that she can. With hearing aids, she is still in the moderate hearing range but with cochlear implants, she will be able to hear at a 20-30 decibels. Normal hearing is at 10-20 decibels.

We also met with the Neonatal Followup Clinic which included a dietician, PT, OT, a nurse, an audiologist and our pediatrician. We are very hopeful that she will be walking soo. We need to focus on her diet as she is only gaining 3 grams a day and she needs to be around 7-8 grams a day. Her CMV is working against us... so we need to work extra hard at getting those calories in her.
Butter on everything, icecream for breakfast, chocolat's our best friend...
let's load you up!!
Just kidding, we need to do it the "healthy" way!!
As soon as we know a surgery date, we will let you all know!

Friday, June 5, 2009

We survived our week....barely!

Last week, we went to Edmonton for appointments and consultations about CI's for Sienna. Well... by the end of it we were emotionally and physically drained.
HEARING TEST: It all started with a hearing test... only to confirm that her hearing in the right ear is getting worse, resulting in a profound hearing loss. It is still the "better hearing" ear, at 90db, believe it or not.

SPEECH ASSESSMENT: After answering a pile of questions, our speech pathologist had this to say, "wow, I can't believe how much Sienna's doing, she has so much going for her, we just need to get her hearing!" She uses and understands about 10 signs, she has numerous sounds and she communicates very well.
CONSULTATIONS: We went over how they work, risks, expectations, bilateral or not, statistics, reliability... We are still processing all the information they gave us, even a week later.

CT SCAN: Sienna was a trooper, she was sedated, they performed the CT scan and voila, she opened her eyes wide, looking for her mother, 20 minutes later. The hardest part is the fasting, the poking and of course afterwards the waking up thirsty, hungry and a little disorientated.
THANKS AGAIN, to Darcy, Lisa, Matante Yvonne, Darryl and Alanna, you helped make our busy week in the city so much easier.
After all that... it was well worth it because our audiologist called us on Wednesday and told us that the CI comity approved her!!!!!.... that is pending medical review of the CT scan by the ENT. (which we were told, because she could hear when she was born... she has everything she needs for a CI).

OH yeah, to finish our week, Sienna ended up in the StAlbert Hospital. I was up with her all Friday night as she was having a hard time breathing so we brought her to the hospital Saturday morning. A chest xray confirmed she had bronchiolotist. So instead of spending a relaxing weekend at Kevin's brother's, I spent it in a small room with a toddler hooked up to oxygen with no where to crawl.

NEXT STEP... June 11th & 12th, we return to Edmonton for appointments with 2 ENT's, who both perform CI surgeries. We also meet with the CI Specialist to go over the 2 compagnies, Cochlear and Advanced Bionics. We need to make a decision ASAP as to which company is best suited for our daughter. While in Edmonton, we are also have an appointment at the Neonatal and Infant Follow-up Clinic where Sienna will be seened by the PT, OT, Pediatrician, Nurse, Dietician and Audilologist. WOW, another BIG week!
We are very excited however for those who've been through this, we are very anxious and scared too. Your thought and prayers, blogs and posts have helped us get this far!! Thanks for being there for us!