Friday, July 30, 2010

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!

Wednesday, July 28, 2010

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.

Thursday, July 8, 2010

I'm 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!