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.

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‘Done’? What’s this ‘done’ you speak of?

In the last 4+ years, I don’t think I have finished a single thing. Oh yes, I still somehow manage to eat, get nebs and medical procedures finished throughout the day, but NOT one “project” that I have started has moved to the ‘done’ pile.

The Laundry Mountain is one example. Today:

An ever-growing pile of “to do” that today is nearing doorknob height while I continue to work on Laundry Mtn. 2 located in the basement near the washer/dryer…

I started painting the kitchen – back when the twins were 2 maybe? Thus far, there are painted cabinets, a first coat on the walls around the cabinets- except behind the fridge since it is STUCK between the mid-wall and the over-length countertop installed by previous owners. The trim is still the dark wood or raw surface left by these owners as well… I painted the peninsula counter- it looks amazingly like a stone counter now- and completed the tiling on the back wall behind it. The rest of the backsplash is a cross between the plastic shards I have yet to remove and the ugly glue scarred surface left behind in the area I have gotten to. Sitting on the floor in front of the [shelfless] pantry closet is the box of the remaining tile. The “eat-in” area adjoining the kitchen has about 1/3 of one wall coated in a single layer of the new paint color. It is as beautiful as you might imagine. UGH.

I have 4 drafts orphaned here on my blog that I began writing last week. Some rambling ranting that I need to clean up before sharing, some opening statements of things I need to work through here in the blogosphere, some quotes from other blogging that I want to link & share; all drafts, none ‘done’.

This week I began the drudgery of cleaning up my eldest’s room to re-purpose it so I might get to sleep in a bed for 5 days/week sometime soon. Half the bed is covered by things I would love to yard sale- dusted off, checked for complete sets, price tag stickers… I have a nurse Sunday and could sell some of these things off, EXCEPT: don’t have any cash for change if people come and buy a single item without any. Yard Sale scratched off the list of possible for done. After the banks closed yesterday, and my nurse left for the night, there was no possibility of my getting to a location where I could exchange cash for ones- without 3 medical kids in tow and a suction machine.

I remember ‘done’: a distant, dusty memory of days before complex medical needs. Days so long past I can’t hope to view them with any clarity, nor see the trails that may lead me back to the land of “getting something done”…

Best click publish before this ends up on the pile.

Achilles versus Goliath

I am mixing myths but the battle waged between competing needs is best described by this title. Here’s the skinny:

All 3 of my younger children have special medical and developmental needs. All 3 joined my family through adoption and were “incubated” within the same cocaine-enriched environment until the pregnancy could no longer hold on. The twins were born at 27 weeks and my youngest was born at 33 weeks. Each of them has a variety of GI (stomach, feeding, bowel) challenges, breathing (2 trachs, apnea) issues, and varied motor challenges related to their lack of access to oxygen during their emergency c-section births.

The Goliath of our family are the breathing & airway issues all 3 share. Each of them has chronic lung disease of prematurity and some degree of airway obstruction related to weak tracheal walls. Our home resembles a satellite clinic of our local children’s hospital. We have “Vest” airway clearance systems, nebulizer machines for 3 and back-up, humidity compressors, oxygen tanks, nasal cannula, trach masks, CPAP machine and ambu bags. We need stock in the major airway medication companies and are surely on their “frequent buyer” list- wish we earned points! Currently we have 2 types of hypertonic saline, normal saline for inhalation, Pulmicort, Albuterol, Atrovent & Tobramycin medications in use some part of every week. Singulair & Advair are on hand for oral medication support of our asthma prevention routine. Breathing is clearly the Goliath need of our household.

Achilles, on the other hand, is a simple challenge in walking. The tendons running from the feet up the back of my kids’ legs are tight across all 3 kids. Adrien has the least challenge managing walking, running and moving through space- her tight heel cords are controlled by higher than normal tone in her legs that is just the right strength to help her without hindering. Tavish has tight cords & variable tone in his legs, with low trunk tone. His physical needs are met through regular Physical Therapy (PT) and strengthening/endurance activities we do with him throughout the week. Keva, on the other hand, has the same body weakness, motor planning difficulty and the tightest heel cords of the bunch.

Keva has done “serial casting” and now has a pair of AFOs that were custom-made for her in April this year. At the end of June or early July, these AFOs began bruising the back of her calves and needing adjustment. As we have tried to schedule an appointment, we have been thwarted by the availability of the brace shop, its location, and the needs of Goliath. Today the brace shop called to try to re-schedule for the adjustment and I am again unable to commit to a date or time because we are still battling respiratory illness (flu in July) and working hard to heal all 3 before returning to clinics where they may again pick it up.

Bottom line: in our house, Goliath defeats Achilles each time. No matter the annoyance of the orthopedist, the admonishment of the schedulers, the toe-walking – Goliath always wins.

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>

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