The tapestry of the life of a medically complex family

Archive for January, 2011

Lessons from the Specific Carbohydrate Diet

I have many friends with kids who are sensitive to various foods or food components. They often ask about the diet we follow and find it too cumbersome to try to implement in their daily lives. That’s just how I felt when I began, but today in our house it’s just the “new normal”. I wanted to list a few of the things I have learned being on the diet that may help others to begin to adjust things without feeling overwhelmed.

1. Making homemade yogurt is CHEAP and EASY. I stir together and boil the milks I plan to use for the batch, stirring occasionally and shutting off the heat as soon as it boils. I stir occasionally (every 20-30min) while it cools on the back of my stove for 90-120 minutes. I add a cup of organic plain yogurt, whisk & then culture in the yogurt maker for 24 hours. The 2qt. maker makes almost enough for a week for us all. Easy-peasey.

2. Pancakes can be made from almost any mashed/pureed fruit and eggs. Mash a small banana, add an egg, cook like small pancakes. You have effectively deleted grains, gluten and lightened carbs. We love pumpkin here so we use pumpkin, honey & egg some of the time. If it sticks or doesn’t “seem right”, I add another egg.

3. Nut flours add calories. Many of our kids are struggling to put on weight. Nut flour can be added/substituted and add significant calories to a dish- PLUS it tastes great. White flour: 455 calories/cup. Almond flour: 672 cal/cup.

4. Baked peanut butter, honey, an egg & some baking soda make a delicious brownie-like dessert food. My kids call it peanut butter bread or “tannies” and even Tav will eat it!

5. Focusing on the veggie & meat parts of a meal effectively complies with SCD in almost all cases.

6. “Food rules” such as to “what to eat when” don’t apply with SCD. They need not apply in anyone’s way of eating/diet. Waffles for dinner is totally acceptable.

7. Bread can be made in the microwave! And it’s pretty good!

8. Cutting a loaf of bread can be done the “long way” to transform a short loaf into sandwich bread.

9. Meat sandwiches can be crafted on lettuce leaves- voila ‘wrap’.  SO yummy!

10. If I can do it, anyone can.

 

Category:

Feeding, kids, Preemie, Special Needs, Trach

Baking and Yogurt and Children, Oh My!

Because we are on an alternative diet [Specific Carbohydrate Diet], all foods are made from scratch- raw foods crafted into spices, sauces and meals. With a grain-free, starch-free, additive-free regimen, my kids’ skin is clear of eczema, vomiting is kept to a minimum and weight-gain has become a regular occurring phenomena across the triple threat. The only pre-made foods we get away with are salads [without dressing] and Larabars of the fruit & nut variety – not chocolate because it is not SCD.

Each Sunday begins like any other day, 2 nebs per twin, 1 neb per youngest, almond milk/formula time, breakfast… then the food prep begins. I have worked out my week so that yogurt-making is often due on Sundays. Boiling 8-16 cups of whole milk and 1/2 & 1/2 blend, letting it cool to 110 degrees before adding plain yogurt as a starter and beginning the 24 hour culture process in side-by-side yogurt makers. Tomorrow early afternoon we should have enough yogurt to get through a week, before making more next weekend.

Breads, waffles, muffins & meatballs are all made with almond flour or almond meal in our house. On Sunday and/or Monday I try to bake a loaf or two of bread so that a couple days/week my girls can have sandwiches like other kids. My favorite bread recipe is from the http://www.scdrecipe.com website for bread you can microwave- it smells funny when baking but makes great sandwich bread if you cut the loaf in half and slice lengthwise to make 3 slices per half. Yep. SIX slices of bread per loaf- why I have to bake more than one day each week. I have found GREAT waffle, muffin & scone recipes on the scd recipe site as well as in a grain-free cookbook I use as a guide for much of my cooking. [Everyday Grain-Free Gourmet]

I follow a blog or two whose focus is cooking grain-free. I have some recipes from http://digestivewellness.blogspot.com that I am wanting to try. Coming soon to my kids will be the “one pan chicken nugget dinner” she has crafted and perhaps some of her other dinner fare. Crafting all food from scratch is another part-time job in addition to all else there is to do for kids with complex medical needs, but it is SO worth it when the alternatives are continuous appointments and invasive repeat surgeries.

Category:

Feeding, kids, Preemie, Special Needs, Trach

My Foster Adoption Journey

Growing up I lived in a house with 2 brothers and 2 sisters. We were close in age, shared chores, clothing, treehouses and other adventures. Growing up in this family, we learned to share, debate, laugh, entertain ourselves, ride horses and be responsible for ourselves & others. Our parents may not have agreed with every chosen path, but they provided the guidance and support to get us where we wanted to go. As I grew I knew I wanted just such a family- a group of kids who played with each other, fought with each other, resolved differences and became friends & support to each other as adults.

My life went partially as planned: I earned degrees, worked, lived, loved and had my first child. I raised him as a single mother and spent some time looking and waiting for that person to share parenting of future children with… I have yet to find him. Eventually I decided that my desire for that larger family, that group of kids to annoy & delight each other (& me), was not dependent on my other goal of adult companionship. As a child, I had watched Wednesday’s Child on Boston television and KNEW, even then, that I would eventually adopt children from foster care to expand my family. It was time.

After completing my home study, moving & then revising it, I connected with a wonderful adoption worker through MA DCF. She helped me submit my information for consideration for some sibling groups available in MA while I continued to look through online photolistings for children who would somehow speak to my heart. I knew what I wanted: a sibling group of at least 2-3 kids, children younger than my son, children I could love & support and, most importantly to me, children who may be considered “difficult to adopt” because of their race, history or developmental needs. I knew my limitations- there is only one of me- and I let my worker know the conditions that seemed too much for my life and situation.

One day in January 2007, I logged in to the MARE website photolisting (http://mareinc.org/MARE-Online-Photolisting.html ) and, tucked at the bottom of the page, among a group of pictures of sibling groups from MA, I found this picture of 2 infants. Clicking on the picture to enlarge it and find out more, I looked closely at their chubby cheeks and saw the tracheostomy tubes nestled under their chins. Having worked in early childhood special education, including one year in an award-winning program with children who are technology dependent- I recognized the tubes under their chins and knew what this meant about their ability to breathe without medical support. I knew what the need for care meant, what the time commitment could be, what the medical follow-up & advocacy needs might be- and I KNEW that I wanted to be the resource for these children. My social worker was surprised by my interest but knew to trust me in choosing to submit only on children that I thought I could provide for. I was matched with them in February and the week after their first birthday, I went to a disclosure meeting and had an opportunity to meet them.

Trachgirl was the shy one, leery of new people, remembering the hospitals, the doctors, the people who come in and out of her life; she a safe distance during our first meeting. She warmed up later in the visit and played peek-a-boo in my arms on their nursery floor. Trachboy, less aware of a reason to be fearful, lay in my arms, looked up into my face and cemented their places in my heart. As he nestled into me, nuzzling my arm and falling asleep, I knew there was no hope of turning away or turning back- I had found my children. We had found each other.

After regular visits, a bunch of training on their daily & emergency medical care and a solo overnight at their foster home, Trachboy & Trachgirl came home to our house where they joined their older brother then 13.  My oldest adjusted well to the twins’ arrival and continues to amaze me with his capacity to accept his brother and sisters as full-fledged members of our family.

When the twins were 17 months old, a younger sister was born and she joined our family the week her big sibs turned 2. I remember the day her social worker parked her car out front and walked my precious new bundle up the stairs. My youngest lay in my arms and the twins touched her face, held her hand, and brought toys to show her. I scheduled a family photo for that afternoon, knowing full-well I might realize quickly that there was NO WAY I was ever going to get out of the house again! The pictures were a big success, all four kids looking intently at the camera, a smile from the teen at how crazy his Mom truly was. For some time, this is the completion of our family. One day there may be others who join, related or not, but for now the craziness feels full, real, rewarding.

It has been a journey, laden with challenges and celebrations, hospitalizations, surgeries and periods of wellness & activity. It has been worth it.  It has proven the greatest and most thrilling adventure of my life. I hope that my children will have the opportunity to learn the many lessons I was taught living in a large family. I wish them all the success, friendship, strength and happiness that I have had the fortune to have experienced. I encourage everyone who can, who has the resources, the energy, the love for children and the desire for a strong family to consider what they may have to offer a child from foster care, who may have no one else.

Category:

adoption, foster children, kids, Medicine, Momma making, Preemie, Special Needs, Trach, Twins

A Map of Me

So, I mostly write here about my kids- since they dominate the essence of the tapestry of my life. They dictate the events, the timelines, the tonal qualities of the day-to-day. Today is a fairly good day. After the 7 scheduled AM nebs we are headed into only the first saline neb and it’s nearly 12:30p – great sign that the inhaled antibiotics are working! There I go AGAIN!

Anyway, I grew up with 4 sisters and brothers in a “typical” Irish-American New England household. My 2 sisters and 2 brothers all fall into the grouping I would refer to as “my age”- there being just under 7 years between my older sister and youngest brother. I shared a room with my younger sister and, although we had very different interests as we got older, we have been very close throughout life- until the adoption of my children… but that’s another post!

I was second in line by age but really took the “eldest” role- being only 18 months younger than my older sister and pacing her developmentally. We were kids who spent every day outside, played Little League baseball, and took care of a mini-farm full of animals including: horses, pigs, chickens, dogs, cats and sometimes sheep or steer.  We had a garden that my Mom took primary care of and used it as our snack cabinet for carrots and other veggies much of our summer.

Our home sat on 7 acres, behind other street-side houses, hidden from the road by trees and the barn. It was about 1/5 mile uphill on our driveway from the road and the driveway was paved a few months after we moved in. That driveway was a serious source of amusement and adventure- cruising down it on bikes, rollerskating on the back parking area, shoveling it before my parents bought a small tractor with snow blower & plow capacities. I remember the many times we went to school with matching skinned elbows to the person we rode down to the first turn in the Radio Flyer wagon, risking life & limb!

Growing up in this family, we learned to share, debate, laugh, entertain ourselves, ride horses and be responsible for ourselves & others; animal feeding, bedding and watering were our chores from an early age. We were encouraged to do well in school. Conversations about college were based on the “where you would go” tenet, not “if”. Each of us was encouraged to work to our potential and succeed at the career we chose for ourselves. Our parents may not have agreed with every chosen path, but they provided the guidance and support to get us where we wanted to go.

It wasn’t “perfect”- lest you feel I came from some idyllic upbringing. My father was a “red-headed Irishman” and we often determined winners at our table by the person who yelled the loudest! It was the 70s, when spanking was an expected and accepted form of discipline- a message we very clearly understood. We fought with each other, ruined each other’s toys or belongings, but worked it out- SUCH an important skill to bring to adulthood.

My 2 sisters were dancers and singers, my 2 brothers were adventurers, farmers and tree-house builders. There were several different tree forts we built together and played in along with neighborhood kids. My favorite outdoor adventures centered around play on this groping of large rocks that we called “the mountains” when we were kids. One rock was probably about 4′ high by 10′ long, with a hollow indentation at one end- we called this one “Moby Dick”. The other grouping was much larger, with 6-8′ facades we climbed, scaled or slid down, picking our snacks from the blueberry bushes that grew atop them. Looking back, the good far out-weighed the challenges or turmoil. We have grown into a close-knit group of adults, with frequent family contact and regular family get-togethers.

These good memories are probably what has led me to adopt a sibling group out of foster care. I have always wanted to adopt. I remember seeing Wednesday’s Child on the Boston news each week and thinking these children needed and deserved a home. I knew young that my family would include children adopted from the US Foster Care system. I had no idea these children would have the current cluster of needs and strengths that I deal with on a daily basis, I only knew that my house would be filled with children and I would parent them to the best of my ability.

Before I expanded my family through adoption, I completed education and special education degrees. I worked for private agencies, public schools, research projects and with state education departments, designing and providing training and technical assistance. I supported families, school teams and service providers in their quest to provide better services for children along the autism spectrum. It became my career, my true love. But still I wished for more children, brothers and sisters for my eldest to have in his life into late adult-hood, after I pass through crotchety old womanhood into the next place. When I left a research position as they re-structured their grant, I decided it was time.

When my children joined my family, they brought with them challenges, trials, but also strengths. It has been a struggle at times to provide the balance needed to keep my eldest supported in his changing needs, while managing the needs of many wee ones.  It has been worth it. I hope that my children will have the opportunity to learn the many lessons I was taught living in a large family. I wish them all the success, friendship, strength and happiness that I have had the fortune to have experienced. Life as a family continues to be a challenge but I hope their hindsight provides them a view of the same map my parents gave me- Thanks, Mom & Dad!

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Uncategorized