A very happy respirologist

Emma was at CHEO again yesterday for a routine follow-up visit with her respirologist.

While she's had a few colds this winter, Emma has weathered them very well and in contrast to last year, we haven't had to rush her to the E.R. in respiratory distress.

She hasn't had a chest x-ray since she was hospitalized with pneumonia last spring, so the doc ordered another one. Although the film wasn't a clear as it could be ('cause Miss Emma was not very pleased about being placed in the contraption needed to hold her still for the x-ray and was hollering her displeasure and squirming to get out), the x-ray revealed some pretty amazing news: Emma's lungs look great! There wasn't any indication that she's been aspirating and the doc saw very little evidence of chronic lung disease or Bronchopulmonary Dysplasia (BPD)! The results were so impressive, the doc declared: "I am a very happy respirologist!"

I am a very happy Mommy.

Emma is doing so well, the doc has decreased her medications (inhaled corticosteroids and bronchodilators) and we don't have to go back for another respirology follow-up appointment until November.

Whoo Hoo!!

And now, à propos of nothing, some recent pics of Emma enjoying breakfast, otherwise known as an applesauce-oatmeal facial:

She likes to move it -- Part II

Diehard Emma fans can find a longer video here (5 minutes, 28 seconds).

... you can't make me!

Emma was back at CHEO today for another swallow study to evaluate her aspiration risk (to see if food or liquid is entering her airway, a potential risk related to her paralyzed vocal cord).

In a Modified Barium Swallow Study, moving x-rays are used to take pictures of a child’s swallow. The child sits in a special support chair and is given foods or liquids that are mixed with barium, a substance which outlines the structures inside the mouth and throat so they can be viewed by x-rays. Barium is a dry, white, chalky, metallic powder that is mixed with water to make a thick, milkshake-like drink.

Emma has had a couple of these tests before, but both times she was an infant and tolerated the procedures very well. Now that she's a "big girl", things did not go so smoothly.

Firstly, Emma was not supposed to eat anything after midnight. Now, for a baby, that is a really long time to go without food. Then, the test was unexpectedly delayed and we were left to wander the halls of CHEO - with Emma in her stroller - for more than half an hour after our appointment time (mostly because it's still RSV season and Mommy is paranoid about exposing Emma to germs/viruses from the other kids in the waiting room). By the time we got into the x-ray suite and everything was set up, Emma had not eaten in over 15 hours and was, as you might imagine, not her usual happy self. Actually, I thought she did really well as she still managed to smile and play with the Occupational Therapist who was helping with the test. I surely would have been a whole lot crankier if I hadn't eaten in that long!

Emma eagerly took two spoonfuls of her apple sauce-mixed-with-barium, promptly spit them out, and made a face similar to this:



Then, we offered her bottle filled with the vile barium solution. Emma gently moved it away from her mouth, shaking her head as if to politely say "no thank you." We offered it again. She, a little less politely, swatted the offending bottle away, more vehemently shaking her head. The third time it was offered, Emma threw the bottle, shook her head, and added a "no no no no no no no" in case we hadn't figured out that she'd rather not have any, thankyouverymuch.



No matter how we tried, Emma refused to take another bite/sip. And we all ended up covered in barium which, by the way, has the appearance, consistency, and staying power of Liquid Paper correction fluid. Emma had it all over her face and hands and in her hair. Tonight, I even found some in her ears. Unfortunately very little actually got into her mouth, much less her throat, so the radiologist wasn't able to see if she was aspirating when she swallows.

We'll probably have to repeat the test again, but I think we'll wait for a while. It's hard to see Emma's face looking like this:



when we're more used to seeing a happy, smiling baby:

Vocal Cord Update

You wouldn't think it would be so hard to find the time to update Emma's blog on a more regular basis, but there never seems to be enough hours in the day....

Emma had a couple of appointments at CHEO last week. On Tuesday we had a follow-up visit with the E.N.T. clinic. We see the specialist regularly to check on her vocal cords (one was paralyzed after the PDA surgery she had at 2 weeks old). Emma had another laryngoscopy in which a thin, flexible fibre-optic tube is passed through her nose to her larynx to see if her vocal cords are moving. Unfortunately, the exam showed that Emma's left vocal cord is still paralyzed (open), and the specialist feels the paralysis will be permanent. It appears that Emma's right vocal cord is compensating well and is moving over to make up for the paralyzed left cord, but her voice does seem hoarse/raspy most of the time. Actually she often sounds a bit like Donald Duck, but we find it quite endearing! :)

The specialist said that Emma might need to have speech therapy to help with her voice quality, and noted that there are also some treatment/surgical options we could consider if her voice quality is very impaired. For now, we're just going to wait and see how her voice sounds once she is verbalizing more.

The other problem posed by a paralyzed vocal cord is that the open cord allows food or liquid to slip into the trachea and lungs. So far, we've been adding a special powder to Emma's milk to make it thicker/easier for her to swallow and reduce the risk of aspiration. It's possible that as Emma gets older, she will outgrow the problem, so we're going to have another feeding study to assess her aspiration risk in a couple of weeks.

We were back at CHEO on Friday for Emma's 4th Synagis injection (vaccine to help prevent RSV). She'll likely have one or two more needles this spring. While we're very thankful she qualified for the injections again this year, we're really looking forward to Spring when the risk of RSV decreases and we can get out of hibernation mode!

For your viewing pleasure, here are a few more pictures from this weekend:

Caught in the Act!

Emma, HVAC technician.



Airflow check!



Which way do you want this one to blow?



Ok...



I want this ON!



Shhhhhhhh...



Yeah, I mean you...



Watching...always watching...