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.

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.

Growing like a weed!

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!

Grow...grow...grow!

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!

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

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!