The tapestry of the life of a medically complex family

Archive for the ‘Twins’ Category

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.

Cool!

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…

“Being” a Family: Our 1st RedSox Game

Some days in our family are completely caught up in the managing of medical care & health-related events. On June 1 2011, we changed the focus completely and journeyed out to enjoy a long-standing family tradition. For generations our family have followed the RedSox and finally the Fearsome Threesome was able to take in their first game at Fenway!

Before the game, we achieved parking magic thanks to some connections with the local police. As we entered the park, I became nostalgic, breathing deeply in the atmosphere of this monumental event for my family. I paused a moment, adjusting the suction bag, oxygen tank and preschooler, and took a second to remember the children who I brought with us in spirit. Being in this place brought them close to me again, renewed my resolve to enjoy whatever part of this event that we were able to attend, and brought tears near the surface at the enormity of this moment.

I am so very thankful my children were well enough to make the trip. I am thankful we had a nurse who could come with us and help out with monitoring the twins’ reaction to the heat. I am thankful to have experienced the RedSox game with all 4 of my children. Sitting there, looking over at the four of them living this experience, I realized that, regardless of future events, they will ALWAYS have this moment together- I will always have this moment. The RedSox were not able to overcome their opponent during this outing, but WE, family of 5 including 2 micro-preemies with trachs and a newly minted adult, overcame some truly remarkable opponents and lived this experience together.

Our family's first RedSox game at Fenway Park

Spring Egg Hunt

Dressed for the quest:

 And they’re OFF!

Taking a basket for a spin

Happy Spring!

Names

As friends have had babies, or gotten pregnant and are expecting, the topic of naming comes up. I find it fascinating the way people name their children- selecting for sound, flow, family history or meaning… People name their children for times of day, times of year, the weather of the day- all sorts of things go into naming kids across my friends & family.

My children all bear names to honor family members who have come before them. My eldest, Liam, is named for my mother’s father William. He was an engineer and a lover of music. My most fond memories are sitting next to him on the bench of his electric organ while he played complex melodies for all of us gathered in my grandparents’ living room. I remember the smells, the warmth… All of that went into naming ‘Liam’ as well as the meaning of the name, a good meaning for an eldest: ‘protector’. His middle name was chosen from a novel in which the hero’s name was ‘Conor’, meaning ‘lover of hounds’, and dogs are his favorite animal so it seems a great choice there too.

My children who have joined my family through adoption have names that bear meaning, as well as honor both their adoptive & birth families. My twins have names that share initials with my parents, ARK for my mother and TJK for my father. ‘Adrien’ arrived with the same first name, meaning ‘dark hair, dark eyes’ in Irish naming. I left her birth name with her and gave her ‘Rosa’ as a middle name to serve as a reminder of a strong African American female, Rosa Parks, who did not allow discrimination and unreasonable limitations define her life. This is a way of life I hope my daughter will be strong enough to emulate. ‘Tavish’ means Thomas, which was my Dad’s name, and ‘twin’ is its definition. ‘Joseph’ was part of his birth name and means ‘god will increase’ so I left it in his name to symbolize my hope for his unknown future. It seems he has risen to the name- being far more capable now than was anticipated at his arrival. I wanted their names to cement their relationship with my family as well as honor their heritage and beginnings.

When Keva was arriving, it was harder to come to a name. She was a beautiful baby and I worked hard to come up with a fitting name. ‘Keva’ is a variation of the Irish ‘Caoimhe’ [same pronunciation], meaning ‘beautiful’. Her middle name she shares with her biological great-grandmother, ‘Catherine’ [pure]. Her great-grandmother has adopted her oldest sisters and raises them nearby. We see them regularly. This woman is raising her third generation of family after raising the kids’ biol. mo., aunts & uncles when their mother died. She too is a strong and healthy role model for her great-grandchildren.

As I anticipate another arrival, I think of names which align with these above. I am working on names that share initials of my father’s sister, or my own sister. Naming will be either initials EPK or JAK. Names with positive messages and meaning are needed, to support this new one as she struggles to thrive here with her siblings in the future. OK all: you have your assignment. First name, middle name combinations, initials either ‘E.P.’ or ‘J.A.’  Thanks for your contributions- & kind words of support!