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!