Sienna's Journey

Happy 2nd Hearing Birthday, Sienna!

2011-08-26T09:08:00.005-06:00

It has now been 2 years post-activation and I have to say she has come along way. If you would have told me that in 2 years , since she was first activated, Sienna would be where she’s at today, I would have had trouble believing you. Here are some stories about how awesome our little girl is doing!

She was eating her plate of supper…I told her in French “Quand tu as fini souper, tu peux aller jouer au parc”, so she turns to her English speaking cousin and says, “When I’m all done supper, I can go play.” WOW!
Just last month, she sang “Frere Jacques” a French lullaby to her great-grandma while her uncle was playing the guitar…she didn’t have all the words or the tune but it was so cute that she did it!
While in the other room, I told Rylee, her older sister, to go upstairs and get dressed. Sibling competition, drove Sienna out of that room and upstairs beating her older sister. (She listens and understands even if she isn’t face to face with the person!)
She sat down for the first time ever through a story about a girl and a boy on a canoe ride. Then a few days later while everyone else is telling stories by the fire, she turns to me and says I would like to talk and tell a story. So we got everyone’s attention and she told the story of the girl and boy on their canoe ride. She was missing parts but everyone got the main idea of the story.
She’ll pick up a book and will make up a story while looking at the pictures.
She had her very first phone conversation which made sense! With my mom! In English!
Many, many more!!!

There are many more moments that I am very proud of…these are just a few!

We just returned from our 2nd year post-activation at the Glenrose in Edmonton and they are just as proud of her as we are. She is still hearing at a 15-20db and all 22 electrodes are working on both sides. We also did a language assessment. First part was in French. She repeated words which I said on the other side of the booth while covering my mouth so she wouldn’t lip read. A French SLP wrote them down as she would pronounce them. There were 3 lists, one list for the right CI, one for the left and then one for both. She did amazing and better when she had her 2 CI’s on, just goes to show how important bilateral is! Then she followed French orders with Mr. Potato Head and missed a few but did well. The last part of our long morning was an English recorded comprehension test. Our audiologist asked if we wanted to try an English test and I said we can just not sure how much English she really understands. Well, she blew us away! Example, the recording would say something like, “Help me with my shoes please!” and there would be a picture of a boy eating, a boy washing his hands and a boy putting his shoes on and Sienna would have to pick out the one that made sense. I can’t wait to get the report back and share it with you. Stay tuned!

Now I’m off to prepare for Sienna’s 4th birthday party! The ladybug celebration is Sunday, August 28th. It’s so exciting to see her face and excitement as we talk about it. She is 4 and NOW understands that her birthday is in 3 sleeps!

She’s GROWING!!

2011-07-14T09:06:00.001-06:00

Here's an update on her health issues.

We've been seeing this amazing pediatrician in Edmonton since January, trying to get her health and growth on track. He said for most people a cold lasts 7-10 days but when a person can't shake it, either asthma or acid reflux or both is the culprit. So, we are treating Sienna for both. She takes QVAR -1puff twice daily to make her lungs stronger and she takes 3.3ml of Prevacid twice daily. When she gets a cold, it lingers for weeks; for example, from January 20th to March 10th, she was sick with a cough and runny nose for 7 weeks out of 8 weeks. She also sometimes gets these cough attacks and then pukes. She was like this until the beginning of May and has been healthy since then until now. A cold is going through our family and of course Sienna caught it and it's been 9 days now that she is fighting it. Hopefully she can shake it fast cause we have a wedding to attend this weekend!!

As for her growth, her appetite is there when she is healthy. These are her measurements from our last two visits at the pediatricians:

March 10th- weight-21.6lbs height-86cm

June 26th- weight- 22.6lbs height-91cm

She is still very tiny as she will be 4 in August and is not yet 23lbs. However as you can see, she is GROWING!!!! She gained an entire pound in 3.5 months compared to last year when she gained a pound in a year and she also grew 5 cm, unbelievable! According to the growth chart, for her height she is following the 5 percentile curb which is awesome cause for the longest time she was way below the curb. As for her weight, she is still below the bottom curb but she is now finally narrowing the gap. Her doctor said, whatever we are doing, keep doing it. You don't know how great that was to hear! It's been a battle with her growth since she was a baby and finally now I feel we are on the right track. Our next pediatrician appointment is in September so until then we are going to fill her little belly and put her on the curb once and for all!!

Sienna’s first year of pre-school

2011-07-12T08:48:00.001-06:00

Sienna ended her first year of pre-school at the end of May and I have to say she made tremendous progress since the day she first began. She spent 2 mornings a week in a colorful, energetic and positive classroom full of French speaking classmates, a teacher and a teacher assistant.

Mme Marthe, her energetic teacher, spent an enormous amount of time preparing enriching and interesting activities, and crafts. She always had positive words and ways with all the children, when they would act out, she would look them in the eyes and say, "Je t'aime!" At the end of the class, every child would line up and take a turn to listen to Mme Marthe whisper kind words in every student's ear. Sienna was always excited to go to school, every night before bed she would ask if she has school tomorrow. You can just imagine our summer holidays, "est-ce que j'ai l'ecole demain?"

Mme Diane, her teacher's assistant, was introduced to Sienna in the middle of January and they hit it off from the start. This was not surprising as Mme Diane is a gentle, kind and has a gift of listening which is exactly what Sienna needs to flourish. She drops down to her knees to listen to Sienna's words, she speaks slowly in a calm voice with great articulation. Sienna and Mme Diane prepared a special box with vocabulary cards used to play games to enrich her vocabulary. Sienna's very lucky to have found these two people along her hearing journey. They both played an important role in her progress.

We can't wait for September when school starts as I can just imagine what kind of leaps and bounds she'll make next year.

Rylee, the older sister

2011-01-26T14:28:00.002-07:00

Rylee is the one who gets left behind when we go to Edmonton for medical trips.

Rylee is the one who stays home with the family…cause Sienna is sick again.

Rylee is the one who gives in sometimes because Sienna can't understand.

Rylee is the one who deals with a frustrated and aggressive little sister.

Rylee is the one who covers her ears when Sienna screams or throws her tantrums.

Rylee is the one who knows how to reason with Sienna to get her to cooperate.

It is so hard to be the older sister!

However;

Rylee is the one who gets to eat candy while her little sister takes her nap.

Rylee is the one who gets to stay up just a little later.

Rylee is the one who gets to really enjoy fun activities like…bowling, sledding, and skating.

Rylee is the one who models how to color between the lines, how to glue and how to cut.

Rylee is the one who helped Sienna come so far and so fast in her communication.

Rylee is the one who has patience when playing with Sienna.

Rylee is the one who understands Sienna the best.

Rylee is the one who helps others understand Sienna when she is trying to tell them something.

Rylee is the one who Sienna will always look up to!

Rylee is the one who will help Sienna reach her true potential!

Thank-you Rylee for being you,

cause I just don't know if Sienna would be who she is today!!

OMGoodness it’s been a while!!

2011-01-04T14:15:00.004-07:00

OMGoddness it's been a while!! First I need to say MERRY CHRISTMAS AND HAPPY NEW YEAR TO ALL. I have been very busy since Kendra came into our world that I have not had the time…or I guess I should say have made the time to blog. Between Kendra's arrival, Rylee and Sienna both starting school, children sick from the common colds, building our new house and Christmas it's been crazy around here. So here it goes!!

Sienna welcomed a little sister on September 14, 2010, Kendra Lou. She is now 3.5 months and growing fast.

Sienna began preschool at Ecole Heritage, the Francophone school in town, every Tuesday and Thursday mornings. She began at the beginning of October and settled in very well. We were well taken care of from the start. Her teacher, Mme Marthe, is an energetic educator who understands children with disabilities especially one with a hearing loss as her son had a hearing loss on one side. At the beginning of December, PUF enabled them to hire a full-time aid for Sienna to help her with her language skills. I am very pleased with the dedication and teamwork involving as many as 6 adults including myself…all working together to help Sienna reach her full potential. I'm in awe to see that these people are so dedicated in seeing my child succeed and will do what it takes to ensure that. However; I am sad to say good-bye to our speech language pathologist, Lindsay. Sienna had weekly speech therapy with Lindsay for almost 2 years now with only a few breaks throughout. What doesn't make sense to me is that because we are accessing PUF funding now, she no longer gets her weekly speech therapy sessions with a qualified speech therapist, one who has worked with Sienna weekly for just about 2 years. Through the school, she is now seeing a SLP from Edmonton who will visit 3 times during her school year. The expectation is that her aid will do her "speech therapy". Don't get me wrong, her aid is eager to learn and wants to see Sienna succeed. It's just that she was doing so well with Lindsay that I feel like we are taking a step back from the speech therapy. I could hire a private SLP who could see Sienna once a week but seeing that we live in a northern rural area, there are none to be found. Since beginning preschool, Sienna has made so many gains and I am very excited to see what kind of gains will come. Apart from the speech therapy that she will receive at school; Sienna is learning to socialize, to be more independent, and to follow classroom routines. School is by far the best thing for her, it's just I wish the government would see that things are different up here in Northern Alberta; we don't have the resources or the qualified people like the cities do.

Sienna has come so far since August, it's not even funny. I look back at her SLP's goals and we have achieved them in so little time. Our goals were and still are:

Speech Perception Goals

Sienna will identify 2+key words in the middle of a sentence. Ex: What is flying in the sky? (key words…flying and sky). 2.
Sienna will discriminate between two words with only a single sound difference ex: cat vs hat

Speech Production Goals

Sienna will be able to correctly sequence the sounds required to produce a C1VC2V word ex: piggy, doggie. Sienna was repeating the initial consonant in the middle of the word like mimmens instead of mittens or moomie instead of movie; words where the middle consonant changes.
Sienna will correctly produce the initial consonant in one syllable words. Sienna is doing much better at this but we often need to have her repeat the word with the correct initial consonant.

Language Goals

Sienna will be able to answer questions about herself. Others would ask her name, or her age and she would look at them with a blank face. Now Sienna is beginning to answer how old she is and what is her name?
Sienna will be able to verbally answer what and where questions. Sienna was having difficulties answering questions; she would just repeat the question. This is expected as we have been encouraging her repeat everything we say for the past year. Now, she answers simple questions and she is actually asking questions herself, like what are you doing? Where's dad? What is that?

She is now speaking even more clearly, so clearly that others besides me understand her. She is playing with her older sister, not just side by side but they actually play "pretend". She is speaking in short sentences like, "ouvre la porte Rylee," "Merci pour souper," "aide-moi mom s'il vous plait." I am so proud of her accomplishments and have to constantly remind myself that she has only been hearing for close to 1.5 years. She does still get very frustrated when she is not understood and tries so desperately to express herself but sometimes I just can't make out her words. She screams and has tantrums when she is not being understood. So I just remind her to use her words, to calm down and tell me what she wants.

We wish you the best of luck in the NEW YEAR!!

Kids, they grow up too fast!!

2010-08-31T21:26:00.005-06:00

Sienna's new headband!! We love them!

Thank-you to Lily's mom for the contact info.

Sienna watching her sister wait for the bus!

Rylee excited for her 1st day in grade 1!!
I'M SO PROUD OF HER!

Sienna and her cousin Jordyn celebrating their 3rd birthday!
Sienna-August 28
Jordyn- August 14

Sienna and Rylee at Sienna's 3rd Dora birthday party!

HAPPY 3rd BIRTHDAY SIENNA!

CONGRATULATIONS RYLEE ON BEGINNING GRADE 1.

Sienna's 1st Hearing Birthday

2010-08-23T22:05:00.001-06:00

Enjoy!

Make an on-line slideshow at www.OneTrueMedia.com

CI Inconveniences

2010-07-30T11:29:00.002-06:00

We have been very proud of Sienna and her progress. We look at her as being “normal”, the miracle of technology is slowly but surely bringing her up to par with her cousins and peers. She communicates well, she is starting to count, she is singing, she imitates our words; she is interacting with her older sister, strangers are beginning to understand her. However it is still very difficult to “deal” with all the equipment she needs to put on day in and day out. From faulty processors, to recharging batteries daily, to constantly repositioning her CI’s around her ears and on her head…it makes our life forever dealing with the inconveniences of technology.

Problems we’ve encountered:

-Presently one of the screens is missing a line…so I need to call Cochlear and figure what to do next.
- Sienna got a hold of her second set of rechargeable batteries that I alternate with, couldn’t find them for 2 weeks. Then one day I found them in the washer after I had washed a pair of her shorts. That stinker! Miraculously they still work.
- Sienna is beginning to wear her CI’s in the vehicle which is great because this is when we sing, we say the alphabet, we see the trains, the animals, etc. However, just this week, my mom took her out of the car and little did I know her CI had fallen on the ground. I thought I had it at home (being pregnant and all, my memory just isn’t there), anyway after 4 hours of looking at home and crying, I finally found them on the ground outside!
- Just in June we had to replace a processor after we needed to remove the battery to turn it off. That’s after we tried two replacement controllers to find out that it was the processor.

We wonder what it will be like later on, when Sienna’s older and she is dealing with these inconveniences. Every once in a while whisper to ourselves, life isn’t fair for our little girl who for the rest of her life will be dealing with all this equipment. Some of the questions and issues we have been dealing with are:

The constant removal of them when she's in the pool or jumping on a trampoline (fun hearing moments she is missing out on)?
How will she take swimming lessons?
Will she ever be able to wrestle around with her sister and dad without having her CI’s fall off?
When will she be able to play independently without me worrying about her CI’s falling off, losing them or breaking them?

All these questions come and go, they soon pass, and the worrying soon subsides as we realize that these very small inconveniences are small prices we pay for giving Sienna the gift of hearing.

We are currently dealing with the best way to have them fit on Sienna to make our lives easier and of course to make it easier on Sienna. We have been using the ear molds with the baby worn set-up which means every 3 months we need new molds, we are dealing with cords and they still require constant monitoring to ensure they are on properly. So for the last couple of weeks we’ve been trying the snugfit with the baby worn and I’m not a fan of it because they bend her ears and they still do no remain in place. So, thanks to Megan, Lily’s mom, I am ordering the headbands that a lady makes which she loves, loves, loves. Can’t wait to try them, we are willing to try anything at this point. If you have any other ideas for our little girl, please share!

Sienna's Specialists!

2010-07-28T21:22:00.005-06:00

These past few months we’ve seen a few specialists in Edmonton for ongoing concerns with Sienna’s health.

Pulmonologist (Lung Specialist)- Since Sienna’s birth she has been sick often. When she does get a runny nose, it develops into a stubborn cough, with lots of mucus which she has a hard time getting rid of. She often would cough so much she wouldn’t be able to catch her breath and would often vomit. We’ve seen the lung specialist 3 times now since December 2009 and since then she has been diagnosed with asthma and found out she was severely allergic to cats and moderately allergic to dogs, feathers and dust. First she was put on QVAR, a daily puffer, for 4 months but was only healthy for 1 month out of those 4. So, in April he decided to treat her for acid reflux with 30mg of Prevacid daily. We were told that acid reflux can be a problem in those who were born premature and with developmental delays. She was healthy for 2 months straight (April 30 to June 20), which is the longest ever. So with taking the prevacid and QVAR daily, she was eating great and staying healthy until….she ended up stayin 2 nights in the hospital at the end of June diagnosed with ITP (idiopathic thrombocytopenic purpura). I noticed her bruising easily and little red spots under her eyes called petechiae. We are not sure the cause of it; which in most cases they can’t confirm however it is usually caused by a virus. After looking more deeply into the side effects of Prevacid, it is known as rare and extremely rare to cause the blood disorder thrombocytopenic. So we immediately stopped giving it to her. We returned to see the specialist last week and we will try without an acid reflux medicine and see if our little girl and remain healthy.

Endocrinologist (Hormone Specialist )- We just finished seeing an endocrinologist in June due to her poor growth rate. In December 2009, Sienna was measured in his office as weighing 20lbs 8oz and measuring 79.5cm. We went back to see him 6 months later, in June 2010 and she weighed 21 lbs 12oz and measured 83 cm. The weight is a little concerning, she only gained 8 oz but grew 4cm in 6 months. So he decided to run some hormone blood work but still remains sure that the poor growth is due to the CMV (Cytomegalovirus) and not a hormone deficiency. On the positive side, she did grow 4 cm and apparently the doctors look at that more than the weight. As long as she is growing…I guess. We just make sure that she eats well, I or Kevin usually needs to feed her and she still drinks a calorie drink at the end of the day.

Otolaryngologists (Ears, Nose, Throat Specialist)- Sienna has always had fluid in her ears but very rarely does she get ear infections. Now with her CI’s, ear infections can be very dangerous and need to be treated as an emergency as the infection can lead to meningitis in CI users. Her tubes are out and so the debate is on whether she needs another set put in or not. Because she doesn’t hear normally, the fluid does not cause any hearing loss however it can increase chance of infection and it may affect her CI levels. So we go back to the Glenrose again for her 1 year activation anniversary and will do further testing whether the fluid affects her CI volume level. I really don't want to have her put to sleep again...

Other specialists who see Sienna are…
Ophthalmologist (Eye Specialist)– appointment is in October 2010
Audiologist- appointment is August 13, 2010.

I'm really hoping that these specialist appointments slow down a little, they have from last year to this year...however, with the baby coming, I really want to limit my trips to Edmonton (4 hour drive)...especially with winter road conditions around the corner.

I'm back...to a stay at home mom!! YOUPI!

2010-07-08T21:46:00.018-06:00

Well the last few months have been… how should I put it…well maybe I’ll skip that part, let’s just say that I am so glad to be done working full-time. With a baby arriving in September, a company needing book-keeping duties, Rylee graduating from kindergarten and Sienna’s appointments in Edmonton, I was busy; there definitely wasn’t enough “zzzzz” in my life. I look at mother's who work full-time with an entirely new perspective, don't get me wrong, I admired them before I went back to work full-time however; you don't truly know what it's about unless you live through it. Fortunely, it was a temporary position and I am very grateful that I can stay home with my children while they are young. So my praise goes out to all you working mom's!!

I have to admit that I enjoyed my time in the classroom, I loved the relationships I built with my students, I loved the creativity and the challenge it brought to my life. However, short lived with it only being 2.5 months, now I am concentrating on celebrating Sienna’s first hearing birthday (Aug 12th,2010), Rylee’s milestones with her 1st swimming lessons and beginning grade 1 in the fall and of course the arrival of our baby girl…yes I said baby girl. This will be 3 for our family and the 8th grand-daughter for my parents. Yikes, that’s a lot of girls!! Oh yes I can't forget that we are building a new home for our family of 5. My husband is a journeyman carpenter and is undertaking the project. With the foundation done, the framing has begun!!

Sienna took a break from her weekly trips to the SLP; so we are very excited to get back into it. Because of the summer holidays, we actually won’t begin our sessions until the 1st week of August. Sienna is improving so much: she is finally saying her full name (before she was missing the beginning), she is attempting new words all the time, and she is getting better at pronounciation. She is communicating so well that I’ve noticed that even those who don’t see her very often our understanding her words. I didn’t think much of it at first until I realized, WOW, my little Sienna who just began to hear a year ago can communicate with others who understand her besides her mom, dad and sister.

The summer is
bringing forth new sounds (birds, water splashing, thunder…) and new vocabulary (pool, birds, bike, outside, garden, strawberries, sandals, bathing suit,...). It is so exciting to see her hearing and speech grow. I sure love the summer time…don’t we all!!

You know she's pretty tired when she falls asleep with her CI's on!! I've never seen it happen!

Yesterday, I celebrated my birthday with my family!! I couldn't have asked for a better day!

March has come and gone!!

2010-04-03T10:00:00.007-06:00

March came and went very quickly. Here is what we've been busy with...

*Sienna and I visited a grade 11/12 biology class to talk to them about cochlear implants, they were very interested and had great questions. I think it is so important to educate everyone around us...as many have never seen anyone with them; never mind some have never heard about it.

*Rylee had her gymnastics funmeet...she placed 1st overall. We are very proud of her! She is my shining star!

*My brother-in-law was in an awful avalanche accident in Revelstoke…he is recovering at home now, so we had taken time to go see him in Edmonton. After such a close call hitting so close to home…you can’t help but re-evaluate your priorities in life and remind yourself once again that no matter how busy and stressful life gets…FAMILY is #1.

*I am preparing for a temporary full-time position in grade 3 starting mid April. I am finishing the school year, replacing a teacher going on mat leave. As busy as life will be for our growing family, I am very excited to get back into my career and get another taste of it before the new baby comes.

*My husband is a journeyman carpenter and one of his dreams is to build his family a new house….well his dream is coming true. This past week, we moved our existing home to another spot in our yard to make room for our new house. We are living with my parents temporarily, until all the utilities are hooked up in our existing house. My husband has been hard at work, he makes me so proud. We’ll probably begin the foundation in the coming weeks.

*Last but not least, my little Sienna is doing so well. For her name, she says “enna” but the other day, at speech, she said her 3 syllable name. Yeah, she makes me smile. Her receptive language keeps growing and she tries and tries and tries to repeat everything we say. It is so cute. She is missing a lot of the beginning sounds, especially the ones she knows like “b”, “m”, “s”, “p”, so we have been practicing on that.

Sorry it has been so long, I will do my best to write more often…bye for now, hope everyone is enjoying the spring weather!

Our family is growing!!

2010-02-28T21:32:00.003-07:00

We are adding to our StJean clan. Rylee and Sienna are going to have a baby sister or brother joining them in September. Kevin and I have always wanted to have 3 but with what we’ve gone through this past year, at one point we had decided that our 2 girls completed our family. Then, great things began to happen, Sienna began to hear, began to speak and began to walk before Christmas so we made the decision to continue our family. We see Sienna as we do any other 2.5 year old, she is learning along side of them and is no different than them accept for she needs “equipment” to help her hear. I can’t wait to see Sienna interact with her baby sister or brother; it will help her development tremendously. As for Rylee, she is a great big sis to Sienna and will be for her new sibling as well.

At our 6 month post-activation appointment, from a sound booth test, we found out Sienna hears at 20db so she can basically hear a whisper. Isn’t this truly amazing! I didn’t really need a sound booth test to tell me that cause I have whispered to her before with her back to me and she has turned around. WOW! As for how the language assessment went, we did a few fun activities with the audiologist to evaluate her perception of speech and not where she is at in her speech development. I will hopefully meet with the speech language pathologist for a formal speech evaluation on our next visit to the Glenrose Rehabilitation Hospital.

Sienna’s personality has changed over the last month. She is more demanding, more bratty, more persistent and yells and cries more and is having more tantrums than ever. Not sure why, she is 2.5 and I know this fits right along with the terrible twos but she has never been this mischievous before. I am wondering if it has to do with her hearing now and her speech development. She is a more confident girl now with her hearing, and she now knows her voice can get her what she wants…yells gets our attention very quickly.
Question for you CI moms-----Are any of you going through this, have you seem a change in personality? I remind her to use her words, I stick to my word cause I know they remember if you ever give in once and I try not to give her too much attention when she yells.

Sienna's immersed in language!

2010-02-11T21:24:00.003-07:00

Ways in which Sienna is immersed in language:

1. I have set my home goals along side of our SLP’s goals. I review them monthly, update it and change if necessary.

2. We have weekly SLP sessions in Peace River.

3. We have alone play time for at least 1 hour a day some activities include playing with Little People (fantastic because we play house and use everyday vocabulary like bath, wash your hands, open the fridge, sit, sleep, work on the computer, etc…), we also dress our dolls (clothing vocabulary), feed her, put her bed, sing to her, we do flashcards, play with farm animals etc…

4. We read to her every day!

5. I sing songs… she is already recognizing certain songs… some songs are Head, shoulders, knees and Toes, Wash your hands, Clean-up, Brush your teeth. I kind of makeup songs to children’s songs that I know.

6. We try to repeat the same vocabulary all day long… example, when it’s time to eat, I have her grab a plate, a cup, a spoon, a fork, etc…. when it’s time to dress, I’ll name all the clothing.

7. We talk, talk, talk! ( I have to remind myself often to use my words to describe what we are doing.)

Because we are in a remote area and we don’t have many resources, my role is extremely important in Sienna’s speech therapy. I am very fortunate that I can balance work with staying home with her. I do substitute teach in the elementary school in Falher about 2-3 days a week which is enough to get me out of the house. A few weeks ago, we visited the Grade 3 class which has studied Sound and Hearing in Science. Sienna and I went into their classroom and I spoke to them about cochlear implants, how they work, what is deafness, why children are and become deaf, etc… I would like to visit the other grades someday as it is educating for everyone especially because she is the only child with cochlear implants in our area. I had their attention for the entire 30 minutes and well my little Sunshine Sienna modeled her beautiful CI’s and she had their full attention too.

**Tuesday, Feb 16th, we go for our 6 month post-activation audiology and language evaluation. I am very excited for this as we have not really had any formal language assessment done so far and it will be very interesting to see where she is. In my eyes, which is really what truly matters, she is doing exceptionally well. I am so proud of her, she is my little bionic miracle!

JTC- Distant Learning- Lesson 1

2010-01-16T20:19:00.004-07:00

We survived the holidays and I have to say it was the best Christmas ever. Why? Because Sienna’s walking, hearing, and speaking; because our children are older and the excitement and joy I live through their eyes is heart-warming; because we were surrounded by family who love us and would do anything for us.

Over the holidays, I finally completed my first distant learning lesson with the John Tracy Clinic. It is free and they are very helpful. Here is what stood out from

Lesson 1 –Informal Assessment.

· Remember to get her attention with your voice.
· TALK, TALK, TALK!! (At the beginning, I was apprehensive about this cause I didn’t want to over stimulate her but I can say now at 5 months post-activation, she is ready to hear it all… in short sentences of course!)
· When hearing a sound- point to the ear and say “I heard that!”
· Keep a binder with sections including Audiological Evaluation, Informal Assesements, etc…
· Do a Ling-Six Sound check daily.
· Always gain evidence about her receptive language and expressive language but don’t make her feel like she is being tested.
· Remember, all children with or without hearing loss, usually don’t pronounce their first words clearly. (I need to remind myself of this.)
· Remember, most hearing children are not understood by unfamiliar listeners when they first begin to talk. (I also need to remind myself of this.)
· She’ll begin with 1 word utterances, when she has between 50-100, she may attempt at producing little sentences.
· Speech sounds differ in 3 ways: duration, intensity and pitch. (They make you aware of this and to check to see if your child is doing any of these.)
· Listening should be fun!
· It takes time and repetition for her to learn that you expect her to listen. (This is so true.)
· They finished it off with some great activities!

Sienna is doing very well. She has about 10 spoken words like mom, dad, Rylee, bye, non, merci, assis, puppy, meow, and many sounds with association like a dog’s bark, a sheeps “baaaa”, an airplane goes “aaaa”, etc… As for her receptive language, she is well over 30 words. For a quiet person who doesn’t talk much, I have to remind myself to talk, talk, and talk. I also find she hasn't been repeating as much as she had been in December, she is stuck on the same 10 words. I've been told that this is a normal part in language development, which is a relief. Hopefully it is just that.

I can’t wait to begin Lesson 2- Reinforcing Behavior (Just what I need for my 2.5 year old.)

Christmas video!

2009-12-19T12:02:00.002-07:00

Enjoy!

More appointments...

2009-12-13T20:21:00.006-07:00

We just returned from Edmonton today, back from a weekend of appointments, shopping and visiting. We had 2 appointments for Sienna.

Lung Specialist- We were told that Sienna’s airways are always constricted which means it takes a lot out of her to breathe right. This did not come too much as a surprise; thus the reason I requested an appointment with a lung specialist. Sienna is always sick. Since a young age, she seems to get a cold easily and often which usually led to bronchiolitis, vomiting when she coughed, inhalers to calm her breathing, and many trips to the hospital. While we were there, he noticed her sides were in-drawing meaning she was having hard time breathing. I could not see this, in my eyes, she did not have a runny nose nor a cough therefore she was healthy. She did get an allergy test and surprisingly she is allergic to cats, dogs, dust mites and feathers. Well now that we know her airways are fragile, we must fix it. Because of her CMV, she has poor muscle tone which he says is contributing to the constricted airways. Therefore we must continue doing exercises to strengthen her trunk tone. Second, he put her on QVAR, a corticosteroid oral inhaler and ventilin daily until she gets stronger. We will return to see him in 4 months.

2-Endocrinologist (Hormone Specialist)- CMV does cause poor growth, however, our pediatrician at the Glenrose recommended that we see a hormone specialist to make sure that we are not overlooking what could be a factor in Sienna’s poor growth. So after a detailed review of Sienna’s history and our history; he came to the conclusion that Sienna’s poor weight gain is not due to her growth hormones but due to her having congenital CMV and to the fact that Kevin and I are small people. We return to see him in 6 months. According to their chart, with her weight and height of that day, she is actually gaining at a faster rate. Yeah! Let’s keep up the trend! She weighs 20lbs. 13oz..

We had a fantastic visit with my cousins, Darcy and Lisa, and our kids played, played, played. They were great hosts and took very good care of us, thank-you!

We also had a chance to visit some friends who we’ve been in touch with since May 09. A mutual friend introduced us because their daughter, Allison, just received bilateral cochlear implants last spring. Since then we’ve been in touch by phone and email so we decided to finally put a face to their friendly voices. We had a great time; it was such a pleasure to meet them and to share our stories.

Seeing that it is -40C here in northern Alberta, yes -40C, which marks the beginning of our cold winter, I am very happy that our next Edmonton appointment ( 4.5 hours away) is in mid February…. hopefully, after the brutal cold has past.

All I want for Christmas … I already have!!

2009-12-09T08:39:00.004-07:00

There’s something different about Christmas this year. I couldn’t quite figure it out until a moment of gratitude swept through me about a week ago.

It’s not about the gifts, it’s not about the stress, it’s not about the go, go go like this time of the year usually brings. This year is different for me because really the only thing that matters is our health and our family. It will be exactly 1 year on December 19th, that we found out that Sienna was deaf. What an early Christmas gift that was!! As I take a look back, I cannot believe what our family has gone through. Today, my little girl is hearing and she is walking (not 100% but it is official), and that itself is a blessing, a miracle, a gift from God. I really don’t want anything else.

I just can’t come around to the entire gift giving thing. It’s just things. Can’t we just be grateful at this time of the year for the gift of health, the gift of family, the gift of laughter? Please take this moment to really be thankful for those gifts which surrounds you. How do we teach a 2 year old and a 5 year old that Christmas is not about the gifts it’s about family? With our actions and ours words, I hope that they see it as we see it.

All I want for Christmas... I already have!

The gift of hearing!

The gift of a healthy family!

Sienna's on fire!

2009-12-01T21:34:00.011-07:00

Just when we get discouraged,

Sienna comes around and makes us proud.

This last month has blown us away.

Her language skills are developing.

She surprises us everyday.

Everyday, I add a word to her receptive language.

She attempts to repeat difficult sounds.

She has about 15 speech sounds

and about 30 receptive words.

When I sing, she tries too, it is so neat.

We had an audiologist appointment this week at the Glenrose Rehabilitation Hospital and they were amazed at how well Sienna is doing. She is just about 4 months post activation and she has a great start on her language development. We did a sound booth test and she is hearing sounds at a 15 db and speech sounds at a 25 db.

Sienna is doing so well because of 2 reasons,

1) She is a sponge, she loves to imitate, she is absorbing it all

2) Her older sister Rylee, she does everything Rylee does, she listens to her, she mimics her every move.

Rylee is my #1 language tool.

Rylee is her #1 idol.

She said it... the 3 letter word!!

2009-11-08T20:16:00.007-07:00

She said it, the word I've been waiting a long time to hear. I started playing a peg board game with Sienna to encourage speech. It goes a little something like this...

I put a peg up to my cheek and say a sound ex:baba

Rylee or a 2nd person will repeat the action and the sound

Then, Sienna takes the peg, holds it to her chin and repeats the sound

then puts the peg in the board!

Fantastic activity...just started it yesterday.

Today, when doing this activity, she repeated

baba

mmmm

Then for the first time, I thought I would try the 3 letter word...

I said it, Rylee said it and I couldn't believe my ears...

Sienna said it, as clear as day,

MUM!

Of course, her father wanted me to try DAD

so I did and she did it,

DADA!

We are so proud of her!

Sienna's hearing progress!

2009-10-27T17:07:00.005-06:00

Well, it'll be just about 3 months post-activation for our little Sienna.

Everyone always asks...so are they working?

Here is what I say...

Yes, my little girl can hear!

She looks right at us when we speak to her!

She looks at the phone base when the phone rings!

She recognizes certain sounds and points or acts it out!

ex: When she hears "eeee" she does a monkey.

She differentiates between sounds... for example a bark and a meow!

She dances when she hears music!

She sings our little song when it's time to wash our hands

(doesn't have any sounds right but she has the melody somewhat)!

She localizes sound!

She can hear!

The next question asked.... is she talking?

Here is what I say...

She is making new sounds, not nessarily the ones we are showing her but they're new sounds!

She does "ou", "ow", "ba" and others with no association to anything, yet!

She just started saying,"mam, mam, mam" when she is whining for me!

Its only a matter of time before we hear her first word!

We are reading to her all the time.

There's never any background noise.

We go to Peace River for speech therapy once a week.

Alot of one on one with her.

Lots of repetitions.

There is one thing Sienna has taught me through all of this, it is PATIENCE.

Wash your hands....STOP CMV!

2009-10-15T13:57:00.010-06:00

As most of you know, Sienna has congenital (born with it) cytomegalovirus, CMV. While pregnant with Sienna, my doctor noticed on the ultrasound that Sienna had an enlarged ventricule in her brain. After many ultrasounds at the Royal Alex, one doctor recommended that we get a TORCH screen done once the baby arrives. This would have meant, Sienna would have immediately been diagnosed with CMV, perhaps given an antiviral which could have slowed down and maybe stopped the virus from attacking. She may not have had severe/profound hearing loss, she may not have had such great developmental and growth delays but the doctors referral was missed; all the doctors under baby Sienna's care did not see the recommendation.

After 18 months of questions, concerns and many appointments, a diagnosis came in March '09 when a dedicated and caring pediatrian at the Glenrose Rehabilitation Hospital and a persistent and knowlegable Infectious Disease Specialist at the Stollery Children's hospital worked together to give us an answer to Sienna's hearing loss and developmental and growth delays. They did a never before done test of her newborn blood (which is kept in a lab in Edmonton for the scientist not the doctors), testing for CMV, which came back positive. I have learned alot about this silent and complicated virus and I continue to learn everyday as I encouter new situations. I would like to take this time to share with you what I know about CMV. My knowledge comes mostly from the website Centre for Disease and Control and from the Infectious Disease Specialist at the Stollery Children's Hospital.

Between 50% and 80% of adults in the United States are infected with CMV by 40 years of age

CMV is the most common virus transmitted to a pregnant woman's unborn child

Approximately 1 in 150 children is born with congenital CMV infection

Approximately 1 in 750 children is born with or develops permanent disabilities due to CMV which is a 0.001% chance that it'll happen to you

Congenital CMV (meaning present at birth) is as common a cause of serious disability as Down syndrome, fetal alcohol syndrome, and neural tube defects yet nobody knows about it

CMV is found in body fluids, including urine, saliva (spit), breast milk, blood, tears, semen, and vaginal fluids

Once CMV is in a person's body, it stays there for life

Most CMV infections are "silent," meaning they cause no signs or symptoms in an infected person

Transmission of CMV occurs from person to person, through close contact with body fluids (urine, saliva (spit), breast milk, blood, tears, semen, and vaginal fluids), but the chance of getting CMV infection from casual contact is very small.

In the United States, about 1%-4% of uninfected mothers have primary (or first) CMV infection during a pregnancy.

33% of women who become infected with CMV for the first time during pregnancy pass the virus to their unborn babies.

CMV is spread from person to person contact (such as, kissing, sexual contact, and getting saliva or urine on your hands and then touching your eyes, or the inside of your nose or mouth)

Women who are pregnant or planning a pregnancy should follow hygienic practices (e.g., careful handwashing) to avoid CMV infection. Because young children are more likely to have CMV in their urine or saliva (spit) than are older children or adults, pregnant women who have young children or work with young children should be especially careful.

Vaccines for preventing CMV infection are still in the research and development stage.

PREVENTING CMV DURING PREGNANCY

Wash your hands often with soap and water for 15-20 seconds, especially after changing diapers or touching saliva or nasal secretions from a young child.

Reduce contact with saliva and nasal secretions from young children by 1) using soap and water or a disinfectant to clean hard surfaces that have been contaminated by secretions, 2) not sharing food, drinks, or eating utensils with young children, and 3) being careful to limit kissing of young children on the lips.

If you work in a day care center, limit close contact with children younger than 2½ years of age, especially if you've never been infected with CMV or don't know if you've been infected.

Because Sienna has congenital CMV, she carries the virus and will for the rest of her life. Most of the time the virus is "latent" (i.e. hiding in different cells of the body) and not being excreted. However, from time to time they will shed virus without any symptoms. It can be transmitted by direct contact or contact with a contaminated object, although the highest risk is with repeated direct contact.

Although the risk is extremely low, 0.001% chance, of having a baby born with CMV and permanent disabilities, it happened to me. I am very cautious when Sienna is out especially around pregnant women. This post is to educate pregnant women on the importance of hand-washing even when you are around your own children because they could also be carrying the virus.

Here are other informative links:

Congenital CMV Blog

Department of Health- New York State

Stop CMV

Please pass this message on and help me spread awareness about CMV.

Grieving the loss of a hearing child

2009-10-02T08:53:00.006-06:00

Just to bring you back to the day we found out Sienna was deaf...

For months we were told that she may have a minor hearing loss as she was very vocal and had also passed her newborn screening test. So after many consultations, we finally had an ABR scheduled, an auditory brain response test where the child is sedated in order to test their brain's response to all levels of sound.

There we were waiting in the recovery room, our ENT entered. She went on and on about hearing loss and that Sienna had a profound hearing loss. She said they stimulated her with sound as loud as they could and there was no response. Kevin and I were sitting there, confused so I had to ask, I just had to..."Is Sienna deaf?" I said it, I said the "D" word, and the ENT responded with "yes." Our world came to an end, we were speechless. This news came on December 19th, 08, just before Christmas. Our Christmas last year was spent grieving, we traveled through all the grieving emotions, one by one. This did not happen overnight, it took a while to deal it. I watched an Oprah episode shortly after and one man who lost his twin brother described it like this...

You have a beautiful picture on the wall of what you imagined your life to be,

For us it was a healthy, "normal" family...

Then one day, something happens

They tell us Sienna's deaf...

You then take that beautiful picture from your wall

You smash it into a million pieces

Grief overcomes your mind, body and soul

And slowly as you accept your new life,

As you journey through the pain

You begin painting a new picture.

We have painted that picture, Mom, Dad, Rylee and Sienna, our beautiful family. Sometimes, I catch myself going through the grieving emotions all over again, so I read the poem below.

I came across this poem on one of my CI mom's blog, Tammy about her son Aiden. She is a truly amazing mother. Aiden is very blessed to have a mother who loves him, who will do everything and anything to make his world a better place. I learn alot from her.

This poem is about what happens when a parent finds out there child has a diability. It is so hard to help people understand the feelings a parent goes through. When first told, every parent goes through a grieving process, we are grieving the loss of a "normal" child. With grieving comes denial, anger, deep yearning, despair and finally acceptance.

Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free

to enjoy the very special, the very lovely things ... about Holland.

Sienna's Activation video, at last!

2009-09-24T20:52:00.008-06:00

Video is from August 11th, her CI activation. What a great reaction!! The big frown, the look around, the arms out and of course the turn to mom, it was just too much for her.

UPDATE:

We have begun seeing our SLP, Lindsay, in Peace River. We go once a week and we have a schedule of activities that we do. Right now it's all about receptive language for Sienna. She is taking it all in. You can tell that she is hearing everything, I just love it when she turns her head to me immediately after I start talking to her. We read to her everyday, we sing songs and we repeat everything...and by the way we have chosen to do all of this in french. We are a bilingual family, we are French Canadians. My husband only began speaking english when he was 6 years old and as for myself, my mother is english and my father is french. I went to school in french and received my Bachelors of Education in french. Rylee is bilingual, she speaks both french and english and sometimes frenglish. We cannot close that bilingual door just yet for Sienna. Our bilingualism is a part of our culture, our identity, our pride. I am a teacher, I believe that with Sienna being immersed in the two languages she will do well. However, I am open to the fact that at the end of the day, if two languages is too much for her, we will drop the french, and english will be her only language. Our SLP researched CI and bilingualism and found out that as long as the CI child is immersed in both languages, it is possible.

Hope you enjoyed the video!

I heard that!!

2009-09-04T08:44:00.001-06:00

I heard that!!

Since Tuesday, since Program 3

She's been giving evident signs that

SHE IS HEARING!!

She just loves to play the piano!!

She dances everytime she hears a song!!

Pepere (grandpa in French) stood behind her,

said her name and spoke

she turned her head

I looked in disbelief

1st reaction to sound

The look in her eyes, her facial expression,

You can tell she is definitely using those auditory nerves

I turn the water on

She points to the water

She points to her ear,

I can not believe my eyes,

Is she actually hearing the water running...

Of course she is,

she has 2 cochlear implants,

It is so hard to believe
It is too good to be true
This is only the beginning

Rylee, the older sister

began kindergarten this week

all grown up

no fear, only excitement

Sienna, the younger sister
misses her older sister
but gets to spend quality time with her mom!

And we can't wait to move up to Program 4, watch out!

She gives that a BIG thumbs up!

Sienna's Zoo Birthday Party

2009-09-04T08:14:00.009-06:00

HAPPY 2ND BIRTHDAY,

SIENNA!

AUGUST 28TH, 2009

ZOO ANIMAL PARTY WITH HER COUSINS

ZOO PARTY

BECAUSE SIENNA LOVES ANIMALS

JUST LIKE HER FATHER;

HER COUSINS SHARED

WHAT SOUND THEIR ANIMAL MADE,

SINCE SHE IS HEARING!!

Our new look!

2009-08-26T21:53:00.003-06:00

new look

new beginning

new found hope

2nd mapping accomplished, one more to go

2009-08-22T22:07:00.007-06:00

I returned from Edmonton yesterday, this time my mother came with me. Thank-you for the company and helping me with my girls.

We went for our 2nd mapping appointment, it went very well. Sienna has worn her CI's without a fight for over a week now. I put them on every morning and she wears them all day except for when she naps and when we travel. She is very cooperative, she actually attempts to push it in when her ear mold falls out. Our audiologist gave us 4 more programs to work through. We do return on September 9th for the last of the 3 initial mapping appointments.

From the beginning, even before we knew she was deaf, I always said she was my little social butterfly. She is very interested in communicating, she reads people very well and she is always smiling. This is why I am so very excited about what she will be able to accomplish now that she has her CI's. I am wanting to begin a routine with her... my own speech therapy at home. The teacher in me is coming out. We are from a small town and our resources are limited. Her SLP is about 45 minutes away and has limited experience with hearing impaired children. She is very interested in learning and keeps in contact with the SLP at the Glenrose Hospital. However I feel like alot of the work will fall in my hands. That is why I am interested in taking webinars, online sessions, correspondence courses ... I just need a few more hours in a day!!

I find I am focusing too much energy in "looking" for those hearing moments, reactions to a sound, her head turning to my voice or any kind of "Aha" moments. Instead, I need to just relax and play with her, let her be a 2 year old. Sound to her right now has no meaning. My voice is just another sound. I can't wait to move her up through to program 4... so we can put her in her optimal hearing range... so she can look at me when I say Sienna. I've been waiting a long time for this.

CONGRATULATIONS TO SIENNA!

She is standing on her own for a couple of seconds.

She is taking a few steps.

She can go to a standing position from a squatting position.

Keep it up, we are almost walking.

The BIG Activation Day!

2009-08-13T08:58:00.008-06:00

The realization has set in that this is really happening. Our little girl has entered into the CI world. How exciting is that!!

My sister, Anne, my brother in law and my niece joined us on this special day. It might help to know that, the Glenrose Rehabilitation Hospital is not a hop, jump, skip away from our home. We are a good 4 hour drive north of there so when my family comes for support, we appreciate it enormously as they took minutes, hours and days out of their schedules to spend it with us. Thank-you.

August 11th will always remain a special day in our lives. Before she was "turned on", our audiologist checked everything and all 22 electrodes are firing on both sides. This is great news as usually there are always some electrodes loss. Sienna cooperated very well, in part because her older sister, Rylee, was playing very nicely with her but also because I had marshmallows for her.

I, nor our audiologist, could not have predicted a better reaction. When the sound first came on, she made a big frown, looked around and put out her arms as if she was saying, "What in the world was that?" Our audiologist turned it off for a minute, we signed "all done". When she turned it back on, Sienna again had the big frown and now she signed "all done". We nodded our heads and said, "Not all done, Sienna, this is just the beginning." She then turned and hugged me, the sound was now scaring her. Our audiologist set the sound conservatively and has given us 4 programs, each one giving her a little more sound. By next Friday, when I need to return to the Glenrose, we should have worked our way up to program 4 slowly, depending of course, on Sienna's reactions. We need to make this a positive experience for her, the last thing we want to do is scare her.

As we walked out of the hospital, we could not help but feel sad. Saddened at the thought that for the rest of her life, she will need this equipment. First thing every morning, she will need to gear herself up to be able to hear the world around her, and the last thing she does before bed is take the gear off. This is a forever thing. When she first got her hearing aids, we needed time to adjust at the fact that she's always going to be different from the rest of the children. Again with the CI's, we seem to be going through those same feelings. A feeling that is hard to describe. A feeling my husband and I both felt. For a moment, when Sienna's CI's were first hooked up, she seemed as though she did not belong to us. "Who is she, really?" This feeling did not last long, we decided to come home that same day. We needed that alone time with her to remind us of who those little eyes belong too. They belong to our little girl who came into our world on August 28th, 07. Our little girl who is comical like her father and persistent like her mother. Our little girl who we will love unconditionally.

The next day, we spent time, fiddling around with her Ci's, helping them stay on her ears better. Her ear molds definitely work better. I remember a mother had sewn pouches on the back of her child's shirt. I'm going to try sewing a pouch on a few undershirts to see maybe if that'll work. I just find the babyworn clips so bulky. This is a learning experience for us, we will take each day as it comes. As soon as I have more time, I will post a video and pictures.

Thank-you to the CI moms out there who have been there for us. We will always need you.

Thank-you for the miracle of technology that is allowing our little girl to hear.

Growing like a weed!

2009-08-05T14:38:00.004-06:00

We went for our regular 6 week weigh-in...

Height: 75.5 cm (0.5 cm longer from last visit)
Weight- 18lbs. 7oz. (up 1 lbs)
Head circumference: 44.5 m (up 1.5 cm)

She is very close to 20 lbs... she is on an upward trend, this has never happened, it always was more like a roller coaster ride.

Our pediatrician at the Glenrose believes that CMV is the probable cause of her growth delay however she does not want to miss anything so she is referring us to the Pediatric Endocrine Clinic for an assessment. They will check her growth hormones which could be causing the delay.

She is getting closer and closer to walking! She lets herself go when standing against something... she's working on her balance.

As for her CI implants, we are less than a week away from Sienna's activiation! Can't wait!

Successful Surgery

2009-07-15T10:30:00.009-06:00

Well we survived probably the most difficult part of the whole cochlear implant process... the surgery. Nothing could have prepared us for the long wait we endured at the hospital on the 10th of July. We were told it was going to be a long day but as the day passed, we couldn't help but worry as our little Sienna was in the hands of our ENT surgeon. Without doubt, we knew she was in the best hands possible, the Stollery Children's Hospital, and in the trust of our surgeon.

We arrived at the hospital at 6:00am, I gave her a kiss goodbye as her eyes slowly closed at 7:45am and then the waiting began. If it wasn't for my parents who hung out with us for most of the day, we probably would have not made it. They are the most understanding, caring and the most unselfish people I know... they are always there no matter what. We love you enormously for that. We finally seen our little sunshine at 6:30pm, 11 hours later. She was lying there, still groggy from the sedation, but alert enough to wave hi to my mom and dad. Rylee did very well with the entire surgery thing. When it was time to go, she kissed her older sister and sang her "Twinkle, Twinkle Little Star." Sienna woke up at 2:00am, she had pulled out her IV and thankfully the nurses decided that as long as we gave her enough liquids, they would not put the IV back. Thank goodness! For the rest of the night, she slept off and on in my arms.

The next morning, the ENT intern took the bandages off. I closed my eyes as he took the bandages off and to my surprise they didn't look bad at all. The incisions look amazing, I can't believe what great work they did. We would have been discharged Saturday morning but she had an awful cough. Because she had a runny nose before the surgery, she ended up developing a cough and she became congested after the surgery. We ended up staying one more night.

We bought maracas on this special day because in about 4 weeks, she will be hooked up and able to hear them!

A HUGE thank-you goes out to

the Stollery Children's Hospital

Sienna's ENT surgeon and her crew

the many emails, phonecalls, visits, thoughts and prayers from friends and family

but most of all...

thank-you

to the angels from up above watching over our little girl!

Surgery Date

2009-06-30T20:52:00.002-06:00

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!!

WOW~

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!

Grow...grow...grow!

2009-06-17T22:50:00.003-06:00

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!

2nd Round of appointments

2009-06-15T16:58:00.011-06:00

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
magnetically
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!

We survived our week....barely!

2009-06-05T15:01:00.012-06:00

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!

The Candidacy Evaluation Continues...

2009-05-24T20:57:00.003-06:00

We are off to Edmonton tomorrow, for appointments, consultations and more appointments...
She is a CI candidate according to her profound hearing loss in both ears however we still need to go through a few more appointments before they tell us that she is definitely a CI Candidate.

Here is what we are in for...

Tuesday-
9-10- Sienna's hearing test (Glenrose)
10-11- Speech assessement (Glenrose)
11-12- CI Consultation (Glenrose)
3:00- appointment at the Wildrose to check Sienna's hearing aids

Wednesday-
9-12 - CI Consultation (Glenrose) (without kids)

Thursday-
8:00-?? CT scan at the U of A where they need to sedate her

Friday-
9-12 CI Consultaion (Glenrose) (without kids)
1-2 Social Worker (Glenrose)
3:00- The Wildrose Audiology Clinic is having a Kids Party for all the kids who wear hearing that they work with.

It'll be a very informative week, we will be reviewing the risks, pros, cons, statistics, etc... of cochlear implants.

We would like to thank Darcy and Lisa, Matante Yvonne and Tracey, in advance for helping us out this week in Edmonton, your kindness means everything to us.

I will keep you posted!

The "joys" of Hearing Aids

2009-05-17T14:09:00.010-06:00

HMMMM.... what can I say about hearing aids?!?!?

For anyone who has a child with them,
I'm sure you can relate!

***Feedback, feedback, feedback

does it ever end??

***seems like just when one is working....

the other gives us problems?!?!

*** "WOW, do they ever taste good!?!"

(she sure knows how to get my attention quickly,
especially when I'm on the phone, or cooking supper....never fails)

" Oh! this is where they go, Mom!"

Besides all of the daily nuissances,

**she turns her head to our voices

**she babbles alot more with them on

**she is now doing the "O" formation with her mouth

and every so often the sound "ooooo" comes out, YOUPI!

**we are stimulating the auditory nerve in preparation

for a cochlear implant

Better Hearing and Speech Month

2009-05-13T15:04:00.003-06:00

I just thought I would share with you that it is...
BETTER HEARING AND SPEECH MONTH
MAY 2009

For over 75 years, May has been designated as Better Hearing and Speech Month. This month provides an opportunity to educate and inform others about the importance of good hearing, the social and emotional implications of hearing loss, and the available solutions for those who suffer from hearing loss. One of the most commonly unaddressed health conditions in America today, hearing loss affects more than 31 million Americans, most of whom are below retirement age.

Raise your hand to support hearing health and take action to spread the word about hearing loss in your community.

Hearing Loss Facts

** 1 out of 10 Americans have a hearing loss - that's more than 31,000,000 people1
** 3 out of 1000 children are born with hearing loss - 1.4 million children have hearing loss in the United States
**Children with hearing loss who are identified and receive early intervention prior to 6 months of age develop significantly better language ability than children identified after 6 months
**15% of "baby-boomers" ages 45-64 have hearing loss

**29% of people over age 65 have hearing loss
** The majority (65%) of people with hearing loss are below retirement age
**It's estimated that 6.2 million people use hearing aids - per the Better Hearing Institute, 5-10% of people with hearing loss do not benefit from hearing aids, but could benefit from an alternative treatment such as an implantable hearing solution instead

"Even a very slight hearing loss can have an impact on your daily life," said Dr. Jerry Punch of the Department of Communicative Sciences & Disorders, and the Oyer Speech-Language-Hearing Clinic at Michigan State University. "Hearing loss is treatable, and there is no reason for anyone to miss all the important sounds of life."

Tiny...tiny...tiny, always will be!

2009-05-07T17:07:00.003-06:00

We just had Sienna's measurements taken,

we do every 6 weeks....

May 5th , 2009
weight: 16 lbs. 8 oz.
height: 28 3/4 "

No weight gain from March 24th but...
she did grow 0.6 cm, YOUPI!

CMV does cause poor growth...
however, I'm sure
her mom and dad's size
may have a little something

to do with her being

tiny...tiny...tiny!

Cochlear Implant Candidate

2009-04-29T09:57:00.002-06:00

We received the news on April 14th, 2009 that Sienna is a Cochlear Implant candidate. We still have a few more tests to do to make it official. She needs a CT Scan, booked for May 30th and she needs to meet with a few more specialist before we can make our decision whether this is what we want for Sienna.

We are researching as much as we can, to find out about the risks, the pros and the cons. It is not easy when this life-altering decision for our girl is placed in our hands. All I have to say is thank goodness for the Internet. I have found all sorts of information through websites, forums and blogs. I would like to thank all of you out there for sharing your stories, your trials and tribulations in regards to your child's hearing loss and cochlear implant. You have helped us out enormously, being from a small town, it is sure comforting to know that we are not alone in this process and that there is hope for our little girl to hear one day.

Sienna's history

2009-04-27T17:12:00.009-06:00

It has been a long haul for the StJean family. Born August 28th, 2007, a month premature, Sienna spent 2.5 weeks in the NICU. In the following weeks, she passed the newborn hearing sreening test. Up until 6 months old, we had no concerns. Then we noticed weak muscle tone and she fell off her growing chart, born in the 10-25 percentile she descended into below the 3rd percentile. We soon began seeing an early childhood interventionist.

From June 2008 until December 2008, Sienna was under investigation, why are these things happening to our little girl? In the summer of 2008, we started noticing her hearing loss. The first wakeup moment was when I returned from grocery shopping, I called her name and she did not respond. She is a mommy's girl, I knew if she had heard my voice, she would have turned without hesitation. By the time we were referred to an audiologist, an ENT, a test was done, an ABR was done... we finally were told on December 19th, 2008, the life-altering news, our little girl is deaf in both ears. Thankfully, impressions were taken on that following Monday. She was fitted with pink hearing aids on January 14th, 2009 when she began to hear.

The Glenrose Rehabilitation Hospital in Edmonton Alberta has played an instrumental part in taking care of our family. We began our visits in December 2008, over the Christmas holidays, someone from the hospital called us everyday, to see how we were doing. After extensive report analyzing, our Pediatrician at the Glenrose suspected Congenital Cytomegalovirus as the culprit for Sienna's health concerns. Just last week I received a call, they did a never before done, high-tech procedure, they checked her newborn blood spot for CMV. It came back positive. It's a relief to know that we finally have found the reason however CMV is a very complicated virus. If you would like more information about the virus, please click on the link to the Centre for Disease Control and Prevention.

Our journey has just begun. At 19 months, we know why, now we need to focus on having our little girl walk and of course having her hear with her two little ears she was born with.