1) Moderate to severe food allergies to egg whites and whey (whey and casein make up milk, so since she is allergic to one, she cannot have milk). We believe she is not anaphylactic to her allergies but we keep an epi-pen handy just in case.
2) Eczema (which is typically dependent on how much dairy she has had during the day)
3) Sensory Processing Disorder (SPD)
4) Oropharyngeal Dysphagia (i.e. trouble coordinating oral motor skills, such as chewing and swallowing)
5) Chronic diarrhea (this is most often related to too much dairy, but also if she has had exposure to egg whites. Other times she just has it for seemingly no reason)
6) Chronic aspirator (update on this below). In a nutshell, this basically means that when she drinks thin liquids, a portion of it goes straight to her lungs.
The doctors Emily has seen/is seeing/will see:
1) Pediatric allergist (Dr. Danny)
2) Pediatrician (Dr. Nelson)
4) Pediatric Pulmonologist (Dr. Mannaa)
5) ENT (and soon, a Pediatric ENT)
She has had the following tests done to date:
1) 2 modified barium swallow studies (aka videofluoroscopy)
2) 1 upper GI
3) 1 pH probe
4) 1 pulse oximetry home evaluation (aka sleep study)
This is what we have coming up:
Emily will be seen by a pediatric ENT doc on 9/15/09 up at Denver Children's Hospital. She will then have (at a later date, not sure yet when) what is called a rigid broncoscopy, which will be used to determine the following:
1) whether she has a cleft in her larynx. Clefts are labeled as one of 4 types. Here is a really good link for visualization: http://www.nature.com/gimo/contents/pt1/fig_tab/gimo36_F1.html
2) whether she has a fistula between her larynx and windpipe
3) whether she has Laryngomalacia, or floppy larynx syndrome
If she has a cleft, it is only surgically repairable if it is a stage 3 or 4. Both the fistula and the floppy larynx are surgically repairable as well.
If all of the ENT related tests turn out to be negative, the next route is to determine whether she has a neurological problem. One of two issues stand out to the pulmonologist:
1) Autonomic nervous system disorder
2) Something is "strangulating" the brain stem at the swallow center (which in turn can/will cause swallowing problems).
Today was both a mentally and emotionally exhausting day. We saw the pulmonologist today, who covered with me the course of action moving forward. I want to point out that this doctor is a true God-send. He is one of 3 pediatric pulmonologists in Colorado. He hails from Cincinnati where he is considered somewhat of a pioneer in the studies of children who aspirate. He regularly gives symposiums to other physicians around the country on his findings and research. The pediatric ENT that Em will see in Denver also hails from the same location and has been educated along with Dr. Mannaa on aspiration problems in children. She is a specialist in her field for this problem! YAY for us!! Additionally, Dr. Mannaa informed me that should Emily need surgery to repair her larynx, she will be sent to Cincinnati Children's Hospital to have it done.
I am so thankful to everyone who has kept us in their prayers for this. It is hard to articulate at times how difficult life can be with a kid who, from the outside, looks happy, healthy and is growing. Her problems are all on the inside, and Colby and I have gotten so accustomed to monitoring her every bite and sip that it is now reflex for us. She doesn't always show signs of aspirating (she is what they call a silent aspirator), so that makes it even harder for others to understand her issues.
Regardless, we love our little bug to pieces.
"I praise you, for I am fearfully and wonderfully made. Wonderful are your works; that I know very well"(Psalm 139:14)
Considering summer just came and went in Colorado, my enthusiasm was renewed when I saw our first August recipe for Barefoot Bloggers: Mango Banana Daiquiris!! My only hesitation was how I felt about mangoes, as my experience with one was limited to our last vacation to Mexico. I made plans to visit Whole Foods (since I knew they would have them, and wouldn't have to drive all over hell and half of Georgia in the process).
Problem number one came in when I discovered I only had white rum (and you should have heard my husband yelling at me through the phone, "No! No! No! White and dark rum are not the same!!" as I am just about to pour it into the blender). Hubby lovingly came home from work with a bottle of Mount Gay dark rum.
Problem number two came when I couldn't get the darn mango open. I sliced it like an avocado, only to discover the fruit is ratcheted down to its pit like a vice grip. I will spare you the details (there may or may not have been a curse word uttered, teeth gnashed and threats made), but eventually I decided it needed to be peeled and then cut into wedges off the pit. Note to self: buy frozen mangoes next time!!
Next thing we knew, we were sipping away! The verdict: pretty darn good. Will experiment with peaches next time for sure.
Thanks, Veronica (whose blog Supermarket Serenade I happen to heart) for a fantastic selection!
Here is the recipe:
Mango Banana Daiquiris
2 cups chopped ripe mango (1 to 2 mangos, peeled and seeded)
1 ripe banana, chopped
1/2 cup fresh squeezed lime juice (4 limes)
1/4 cup sugar syrup*
1 1/4 cups dark rum, such as Mount Gay
Mango slices, for serving
Place the mango, banana, lime juice, sugar syrup, and rum in a blender and process until smooth. Add 2 cups of ice and process again until smooth and thick. Serve ice-cold in highball glasses with the mango slices.
*To make simple syrup, heat 1 cup sugar and 1 cup water in a small saucepan until the sugar dissolves. Chill.