The tapestry of the life of a medically complex family

Archive for July, 2011

Birthday Gifts for an SN Parent

This week, our children’s hospital featured a post on their blog about things you can do to support a parent of a child with special needs. The post stimulated me to write about what I wish for for my birthday:


A wish list from the Mom, of kids with special needs

Does not include a teal blue box or collegiate-grade of tweeds


My dreamy gift tomorrow could cost nary a cent

A telephone, a short car-ride, and time with me is spent


A person with a weed-whacker who braves the overgrown

Who weeds the bed out front, and trims the flora sewn


Do you do laundry? Or could you play, be fun?

If you could sit & play a while, I could get some laundry done.


Can you pick up prescriptions? Almond milk? Vanilla for our cake?

If you brought meat & veggies o’er, I’d take the time to bake.


But you need not even venture out, to show me that you care

Reach out, e-mail, accept my child, remind me that you’re there.


A Quiet Week

This week is a “quiet week” – 4 days no nursing & only 2 doctor appointments, 1 for each twin. O sure, the doctor appts we are going to are genetics (results) and an ECHO with cardiology follow-up, but it’s only 2 trips in- and one of them I will have a nurse.

Maybe its just that the next 46 hours are covered with nursing. Maybe it’s that place of denial where a parent needs to live to get through the stress of waiting for testing to see if your 5 year old is suffering from pulmonary hypertension… Maybe. But this is my quiet week.

Sunday as it Should Be

Awaiting lobster pita salad beachside with my youngest.


Amazing Songs

My kids really love the chorus to Bruno Mars’ song “Just the Way You Are”. They sing it in the tub, to each other & to random important individuals in their lives- including our pediatrician. The wording & tune may be a bit off but the sentiment melts your heart when one of their beautiful voices directs it at you.

On the way home from some doctor appointments on Friday, my youngest opens up in song, singing: “… cuz my bwuddah is amazing, just the way he iiiis…” at the top of her 3y.o. lungs.

To which my 5y.o. daughter, Adrien, replies: “Really? Really, Keva?? I don’t think so.” ( in a PERFECT imitation of my disdain when she does something out of bounds…)

Keva then begins a rendition to her sister, singing: “cuz Adrien’s amazing just the way she is…”

And Adrien replies during her song: “Now that’s more like it. That’s appropriate.” ( to incredulous jaw-drops from both the nurse & I…)
Then she adds: “Singing to your ‘bladder’ is not appropriate. Sing that to people.”

<swerving in traffic as we roll with laughter>


The evaporative cooling vests turned out to be amazing. “Activated” with some cool water, they kept Tav & Adrien cool enough to ride their balance bikes on the bike path for 20 minutes before resting- in 85 degree F heat. SO happy we have a tool to help with this. The fearsome 3some had a GREAT time.

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Curative Diet- Who Knew?

This week my twins’ ORL took a look inside their airways during a bronchoscopy. The pictures were remarkable in their differences from last year. Last year’s view of the airways included irregular raised bumps all over the inside of the airway- completely gone now. The upper regions of the lower airway now are smooth & pink-colored. No more red, raised inflammation is present anywhere high along the larynx. I have never seen this on any previous viewing.

It makes me wonder what the culprit has been in the past. What “poison” [to their system] was I feeding them for 4 years that has been removed on the “specific carbohydrate diet” we now follow? There are SO many things we have removed, SO many food changes we have made- what is the one that has helped clear the irritation in this airway region? WHY are there “no allergy” results on their allergy panels that have been run? CLEARLY there was something producing this irritated, red surface view of the past- and it is now gone.

Just one aspect of the multiple questions raised during our medical tour this week…