Our family trip to Edmonton!

We just recently went to Edmonton to see Sienna's CI Audiologist and her pediatrician.

Her audiologist, of course, was amazed with her language skills. She speaks and understands both English and French. We did the usual sound booth test and checked her mapping and everything is good. We'll see them again in 6 months.

Her pediatrician appointment however did not go so well. Despite the awesome fact that Sienna has not been sick with a cold since August, she still is not gaining like she should. After having the flu twice, surviving the hectic holidays and even though the entire family had a cold a couple of weeks ago, Sienna, the allmighty went through it all healthier than ever. She has not gone a month without fighting something since she was born. My husband and I are constantly feeding her, encouraging her to eat, giving her all sorts of food, she only weighs 23.8 lbs at 4.5 years. She did gain over a 1lb in 6 months, when charting her, she is widening the space between her and the bottom of the growth chart. This is just the first sign that she is plateauing, so her next doctor's appointment will tell us lots. As for as height, she is 36", growing 0.5inches in 6 months. We will have to continue working hard at keeping her healthy and getting her to eat.

With Sienna's medical trips, we usually go and come back as fast as possible. This time our family needed some time together so we packed up all the kids and stayed at Fantasyland Hotel at West Edmonton Mall. We had the pleasure of going to a sea lion show, a penguin show and visiting a marine life exhibition. What great family fun!

Happy 2nd Hearing Birthday, Sienna!

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!

1. 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!
2. 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!
3. 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!)
4. 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.
5. She’ll pick up a book and will make up a story while looking at the pictures.
6. She had her very first phone conversation which made sense! With my mom! In English!
7. 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!!

 

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

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

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!!

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

1. 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.
2. Sienna will discriminate between two words with only a single sound difference ex: cat vs hat

Speech Production Goals

1. 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.
2. 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

1. 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?
2. 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!!

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

Enjoy!

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

CI Inconveniences

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!

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!

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!!

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!!

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!

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

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!

Enjoy!

More appointments...

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

1. 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!!

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!

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!!

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

ah

ou

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!