Tuesday, August 31, 2010
Monday, August 23, 2010
Friday, July 30, 2010
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!
Wednesday, July 28, 2010
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.
Thursday, July 8, 2010
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!
Saturday, April 3, 2010
*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!
Sunday, February 28, 2010
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.
Thursday, February 11, 2010
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!
Saturday, January 16, 2010
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
· 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.)