The tapestry of the life of a medically complex family

Archive for the ‘Twins’ Category

2 Years & STILL Screwed

Two years I have sacrificed my health, any semblance of life outside the playroom, having clean laundry on any kind of regular schedule. Averaging 4.5 hours of sleep a night, but never consecutive. Clawing at the soil on the edge of our cliff, trying to hang on. Eating oatmeal 2 meals per day while feeding the kids what they need for health & growth.

FINALLY I refinance. FINALLY I find a grant source to support some of the ingredients for my son’s whole food formula. And, in the last week, finally finding nurses for night time so that I may possibly learn what it is to sleep 5 hours at a time… With the 3 shifts I have on 2 weekdays, I might be able to grocery shop with just ONE vulnerable kid in tow…

And the insurance is dropping hours from my nursing schedule. If I have overnight nursing, I can’t have day shifts. If I use day shifts, it’s back to no sleep… WHY is it that we never make headway? Forget winning, how about having the opportunity not to FAIL?

:’(

Memorial Day Modified

Often families of a child with special healthcare needs will celebrate holidays or family events in ways that are different from others. My family has 2 children with trachs, one on full-time oxygen, & another who has severe asthma & heat & exercise intolerance. These health characteristics change the way we celebrate but do not lessen participation- different, not less.

For Memorial Day, we spent most of the day indoors, away from the heat & smoke from our neighbors’ fire pits. We grilled steak on the Foreman & made salad & veggies on the stovetop. We paused during our day to learn about the purpose of the day & talked about our family veterans to honor their memories.

It was a fun day, with many of the features of traditional celebrations throughout the USA. Just as your celebrations differ from the neighbors, we did it our own way.

Hoping your Memorial Day was a fun, family event. Thank you to the Veterans who have sacrificed for our freedom.

20140601-121453.jpg

20140601-121509.jpg

20140601-121532.jpg

Creating & Building

My Dad has been dead 18 years this summer. He had a favorite sweater I remember especially well. This week I made it into a house-warming birthday gift for my youngest brother. Favorite sweater, handknit by Mom, will soon become a coordinating item. I love to upcycle.

20140212-112428.jpg

The kids had some adventures in creating this week too. There are Valentines to deliver and Tic-Tac-Toe to play. Trachs, kids & hammers…

20140212-112638.jpg

20140212-112652.jpg

20140212-112706.jpg

20140212-112720.jpg

20140212-112733.jpg

20140212-112746.jpg

New Year 2014

2014 came in with an illness bang. Lower sats across the crew & 4L of oxygen for one were the elements of my New Year’s Eve celebrations. 2 days of 6-hour scheduled nebulized medications seem to be working their “magic” & today lung congestion is rampant but oxygen requirements are back nearer to baseline. I am really hoping this is the “turn” of this illness & we’ll be down to 8hr meds & oxygen baseline by the weekend.

This year I hope to blog more- not to high a bar considering there were only 45 posts last year! Be prepared fir updates & poems & cuteness. :)

Hoping for a Happy & Healthy New Year for all of you & yours.

My “Big Kids” of 2014

20140102-114210.jpg

Homeschool Choice

To the doctors and others who judge my decision to homeschool:

It has come to my attention that there is some confusion about the reasons I homeschool my children. You are familiar with the medical reasons (trachs, illness susceptibility) but may not be aware that my choice is also based on the “whole child” needs of each of my children. In addition, it is in part supported by my knowledge of and experience with the US public school system’s structure & variability. For the purpose of this note, I will focus on what is right about homeschooling for my children.

Homeschooling allows for individualization of curriculum and instruction for each of my children. It allows my gifted & talented learner to stretch her abilities at her own pace, my middle ability learner to make age & grade level progress, and my challenged learner to receive appropriate instruction to move skills forward more rapidly than would be possible in a large group setting. It allows me to address developmentally & academically (MA Curriculum Frameworks) appropriate activities within a topic that captivates interest & keeps my kids motivated to keep moving forward in all curricular areas. Each of my children is learning at a good pace, demonstrating the success of their homeschool program.

With regard to social skills, my 3 children span less than 2 academic years in age. Unlike peers enrolled in traditional schooling who spend close to 5 hours a day listening to an adult or completing individual tasks at their desks, my children spend much of each day discussing interesting topics, playing interactively & encouraging each other’s learning. Although they are ‘familiar’ play partners, there is little predictable about their daily play choices & interactions. My child with an autism spectrum diagnosis is encouraged, challenged, instructed and drawn in to dynamic, sustained social interactions daily. Because they are supervised by both nurses & myself, they are regularly exposed to different levels of structure & independence, across different activities. In addition, local cousins (there are 4) visit regularly to participate in play as health allows.

Every day of the week, each child has structured & adult-directed learning activities, individually & in a group. Each completes familiar learning tasks independently, with new curriculum, on multiple days a week. They are read to, read silently & read to each other nearly every day. They do yoga, play ball games, swing, slide & run about daily. Because of their heat intolerance & health, they do tend to spend more time inside than out but have balance beams, an indoor swing & a loft slide for active indoor play as well. Homeschooling allows for spontaneous “field trips” to the beach, historical sites, birdwatching, the aquarium & movies.

As their health improves, medical status changes &/or I return to paid employment outside the home, I will continue to homeschool. I have the skills & intention to homeschool through high school or until such time as one of my children makes a valid case for their individual transition to a private or more traditional school environment that we can afford. Homeschooling is a family value that far exceeds any medical reason to do so.

Apple Picking September 2013

Friday was the day we went to pick apples to make our favorite fall gallettes.

20130929-180051.jpg

20130929-180115.jpg

20130929-180140.jpg

20130929-180202.jpg

20130929-180244.jpg

20130929-180316.jpg

20130929-180336.jpg

Another FIRST

What a fun family first!

20130408-202049.jpg

20130408-202102.jpg

20130408-202115.jpg

20130408-202125.jpg

20130408-202135.jpg

20130408-202144.jpg

20130408-202201.jpg

Follow

Get every new post delivered to your Inbox.

Join 65 other followers