The tapestry of the life of a medically complex family

Archive for the ‘kids’ Category

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.

 

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.

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.

LTR- with Rib Graft Poem Foolery

When your subglottis is narrowed

and various trachea parts are bowed,

a reconstruction’s what you need

an ENT can do the deed.

He first will harvest one mid-rib

And cartilage he’ll have for gib

He’ll graft the narrows, do his best

and then you’ll need some mighty rest.

A day sedated, maybe two,

Until the nurse awakens you.

The stent he placed will take a ride

and in your trachea reside-

for a week or weeks, it will depend,

you’ll hunker down until the end.

Bronchoscopy for its removal

Repeat in a week to assess the upheaval.

The goal is air will better flow

just as it is supposed to go…

Perhaps dilation will be next

until you pass his airway test.

Then with healing finally comes

your voice escaping cross your gums!

Celebration, joy, elation!

Worthy all that consternation.

LTR with rib graft cures

some SGS in trach of yours!

Trach Parents' Prayer

Now I lay me down to rest

2 weeks of laundry as my nest

If I don’t sleep before I wake

I pray for nursing and a break

If I should sleep before new day

I pray this back pain goes away.

 

Please guide my heart and make it true

Watch over all my children do

Please clear their trachs and hold them so

No obstruction from below

Watch over them as they lay sleep

Safe and healthy please do keep.

 

Gretchen Kirby, 11-06-2010

 

Thankful 2010

As we cruise through the first week of November and the challenges and concerns about health for the trifecta and the round-out of the fantastic foursome… I want to take a moment to celebrate the things for which I am MOST thankful.

I have 4 beautiful kids who, regardless of their medical needs and challenges, I love for the sunshine and joy they bring to me. My eldest has struggled with being too young to manage the stress of a first year of college at this time in his life. Thankfully he had the strength to talk about it and eventually withdraw before increasing debt without passing coursework became the outcome. He is a child who lets me know that I can succeed in parenting. He frequently shows the compassionate and nurturing side he has developed over the years when he sits with his young siblings and talks with them about their interests or gives them “pony back rides” in the playroom. I achieved “random hug” status last week by completing the simple task of remembering his Lucky Charms when I went to the grocery store. These tender moments remind me that his wonderful self is still in there, surfacing and diving as he figures out how to navigate his transition to adulthood.

With the twins, I am thankful for their continued resilience, for their seeming increased ability to ward off illness. We have had multiple doctor visits in the local children’s hospital and have been able to avoid contracting the usual “inpatient” events of years past. With my daughter, she has developed a bond with her little sister that involves daily interactive play and nurturing encouragement. She is more likely to be cautious around her trach and has developed MANY pre-reading and early math strengths over the last year. My son is gaining weight (finally!) and his physical and language/communication abilities have improved significantly. He regularly tells his sisters, brother and I that he loves us, participates much more in group play and has begun to be able to mediate his environment better using language over physical means <– oops! SPED speak for less hitting & grabbing, more asking/telling!

My youngest continues to have her physical and medical challenges of unknown diagnoses but she lives her life with sunshine and much humor. Her personality has really grown SO much this year- she is regularly saying goofy/funny things and bobbing her head back and forth like the comedian she is! She has been mostly healthy this year as well and we have testing scheduled soon which will hopefully answer a few of the ongoing nagging questions.

I am thankful for my own health and strength to do all that I do- I DO wish I could do it all a little more calmly at times, but glad I still get it done. I am SO thankful for the healthy and skilled team of nurses we have had over the last year: Alicia, Bass, Diane, Meghan & Sue are resources which have kept my kids on the path of good health without an inpatient stay in 2010 thus far. (Do NOT tell the fates…) The skilled and caring team of doctors that support our efforts also cannot be over-appreciated. I have been blessed SO much by their thorough and thoughtful treatment of ongoing challenges, and quick response to emerging issues so they do not progress to major complications. Our doctors are the best!

It has been another long year but I am thankful for all the blessings that have come along! HUGS to you & yours!