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| Chest x-ray |
When we drove through the parking garage we found ourselves parking close to the exact spot we had parked when Ella had her EMG this past July. It was then that we unofficially knew she had SMA...it was then, in that spot, that our lives took on a completely different meaning. As we passed that spot we both looked and a shudder ran through our bodies...we found parking just a few spots away.
We pushed that awful day out of our minds, gathered up our third baby, bundled her warmly (with her "b4SMA" blanket) in her stroller and went to go meet Dr. Lucille Lester, Pulmonary Specialist.
Dr. Lester is fantastic. She is experienced, easy to talk with, and approaches her craft with care, understanding, and with a logical sense about her. We like Dr. Lester and she is now part of Ella's medical team.
Our main focus was to baseline Ella's respiratory system and develop a plan for her so that we can keep her as healthy as possible for as long as possible. Dr. Lester made it very clear, with a soft yet firm approach, that any virus can lead to disaster. We listened intently.
The day to day plan is to keep the germs at bay. This means our whole family must wash our hands religiously. We must also ask anyone who wishes to hold our Squishy to do the same. If anyone has a cold or any virus, Ella must keep her distance.
Included in the day to day plan is a new therapy called "manual chest therapy". Dr. Lester gave us two hand-held cup-like devices made of a soft rubber. There are certain spots on Ella's torso, back, and sides that we are to firmly pound for a total of 20-30 minutes per day (if she does get sick, we will have to perform "manual chest therapy" several times a day). This will cause vibrations in her chest cavity and will help to move any secretions from the smaller branches of her lungs to the larger, more centered branches where she can then cough them out more efficiently (see the video at the end of the blog).
At some point she will need a vest that will be connected to a compressor to do this for her...and most likely a cough assist machine. That, however, is down the road...we will see how she fares this winter. We will be visiting Dr. Lester again in February and every three-months thereafter to re-assess.
The next step was a chest x-ray to baseline her. She was a perfect patient. Dr. Lester was pleased with her lungs. They are clear and have ample capacity in order for her to breathe normally. She did say that her diaphragm was a bit high, but this is to be expected from a person with weak muscles. All in all, the x-rays were great!
Ella has developed quite the personality when we visit the doctors. She melts them with her charisma and always is tolerant, cooperative, and a joy. Doctors, nurses, therapists, technicians, and support staff always give us compliments on how well she does...
...we are so proud of our Squishy~~
