The tapestry of the life of a medically complex family

Archive for the ‘Feeding’ Category

GERD is SO Much Fun

After a late morning albuterol/ ipratropium round for wheezing break-through, my kids began playing ‘clinic’ with the teddy bears from their beds.

As they prep my son’s bear for a ‘procedure’, my youngest picks him up, places him close to her nose & SNIFFFFFS deeply. “He smells TERRIBLE!” she says before stuffing him under her sister’s nose & asking her to smell.

SNIFFFFFF goes my older daughter. “Ew! This bear smells GROSS! Smell it Momma!”

As she hands me the bear, I realize the leg is moist. Keeping it a good distance from my nose, I sniff lightly.

UGH!!! Vomit. The bear’s leg smells like VOMIT.

Thanks, GERD & overnight GTube feeds. Thanks very much.



A Long & Winding Month

June is here & has already begun to close in as one of the busiest months for getting things done. At the end of the week, we go to a new hospital and the Mitochondrial Disease/Metabolism Clinic for one kid- although they want me to bring along records for my youngest. Last month, about 3 weeks ago, a request for “complete medical records” was made. Today I received records for the ones to be brought along- not one pulmonology note, not one neurology not, not one orthopedist note, none from cardiology… Complete? Not exactly. So tomorrow will be spent calling the medical records department and following up on this & the other request- while I do not have a nurse along for the ride.

The appointment Friday will be tough. I am trying to write a summary list of strengths and concerns. I still feel pretty ambivalent about whether this is truly what we are seeing. At least it is also metabolism- cuz this kid has got some SERIOUS ability to burn calories! Maybe they will have a suggestion that outweighs the GTube recommendation of the GI & Cardiology- maybe they won’t but it’s worth an ask.

The next scheduled appointment is the day when all 3 kids are scheduled to go under anesthesia and have their airways looked at. June 18th will be a crazy-busy day and I have yet to line up hands to hold & rock kiddos pre- & post-op. The appointment may be bound with an in-patient stay overnight- making this a crazy 2-day extravaganza. At least it is at a hospital I 100% trust with the care of my kids so it won’t be as stressful being in 2 rooms if all 3 need to stay.

Closing out the month will be an ACTUAL pulmonary appointment. We have been bundling these with the Complex Care appointments and not really getting much time sometimes. Our pulmo has a great reputation, is easy to talk to and has significant creative ideas on how to treat my kids- but is SO busy taking care of everyone complex in our medical mecca that he is hard to get together with outside his clinic. I will be glad when the month is over and am hopeful the information we get or changes we make will help my kids thrive throughout the rest of summer- & beyond.

How it is Done

The number one question I get from others: “How do you do it?” If you want to know the specifics, you can read about one of the typical days here. But most people are really asking “How do you get ALL of it done? How do you keep going, day in & day out? Where do you get the strength to get up each morning and ‘have at it’?”

My standard short answer is: I just DO. And sometimes not very well… but when it’s a person who really cares, who may have the same things they need to do every day, who might be feeling like they cannot keep on “doing”, I try to give it more thought. Here’s how I think I get through each day:

I am aware of the “big picture” but I work to not get bogged down by the overwhelming list of things, start to “finish”, of every day. I try not to look at everything ahead all of the time- if I do it will quickly overwhelm me. I try to keep really focused on getting the next thing done. I try to remember I am only one person, I can do one thing at a time. I am bad at cutting myself some slack but I have worked to get better at it.

Probably, most importantly, I try to spend part of every day ‘being present’ – noticing what my child or children are doing. Remembering that they have each other for the future. Really watching & experiencing the wonders they really are- looking at how far they have come, the love they show for each other, caring for others. It helps to remind me that, altho I sometimes have a bad day/ horrible parenting moment, my kids really seem pretty ok- sometimes bratty or crazy in their own rite- but then they show me who we really are as a family. Sometimes, when I ready to leave for the grocery store and the twins hug me & say I love you, they call for their sister who they give the same. Something about your 4yo blowing kisses to her sibs to say goodbye, waving & yelling “I LOOOOOVE YOU!” back thru the door- it just lifts you. Days are harder when I don’t have the time to ‘notice’- and sometimes there are lots of those. There is a great blog post about parenting. It’s not exactly about my experiences, but it’s a good reminder to all parents- a quick summary is that we will look back & be happy to have parented, even if not every moment going through feels all that wonderful. (Huffington has that post here)

I always close EVERY day singing “Love You Forever”, 1-to-1 with each kid. And they sing back in their own way- they actually have become good at it. Its my way of telling them, no matter what, at the end of the day, you are the love in my heart- and you always will be.

And whenever I need a reminder of what it’s all about, why it is that I do what I do, I only need look here:

Month of YES

Here we are. February 4th. The day after our nutrition appointment where they asked about my thoughts on placing another GTube. My thoughts: FEAR. TERROR. TORTURE. My son experienced an incorrectly place GTube that no one realized was blocking the exit to his stomach- for 4 YEARS!! He experienced constant, sustained, SEVERE pain that took him until 3.5 to be able to communicate. We have a little over a month until our GI appointment where they will bring it up again. We have work to do. We need new strategies. This post is going to be about “Step 1”.

Step 1 for us is going to be to try to make food in our house more about “yes” & less about force & control. I know for those who don’t have a child with special developmental & medical needs, you are thinking: “Force & control? That’s MESSED up!” And you’re right, it is… But it’s a long & winding “Failure to Thrive” road that gets a family like ours to this place- & we need your support & encouragement, not judgment.

As my 27-week preemie trached twins head to their 6th birthday in March, they continue to have slow growth & development. FINALLY my 4.5y.o. has a “green light” on her exit from the “slow growth & gain” train. Our February of “YES”.

We have 25 more days of February & we are going to try being more of a “yes” family with food.

YES you can have a banana after waffles at breakfast

YES you can have a couple ounces of water first thing in the AM before hi-calorie Peanut Butter Formula

YES we can talk at the table and try to still get food in

YES you can have a lo-cal orange as your breakfast after finishing PBFormula instead of sausages which give you more calories at your “best meal of the day”…

YES to getting milk & food at the SAME TIME vs. “Fluids first, food after”

YES to veggies & meats delivered at the same time at dinner vs. “Meat first, veggies after” (My kids are the ones who see salad as a dessert food)

My goal in the “Month of YES” is not weight gain- that would be nice, awesome, but not my goal. My goal is changing the culture if meals from “torture to be endured” to … anything less noxious- something I don’t yet have words for. Wish us luck. Wish us “YES”.

Thanksgiving Baking

This afternoon’s Specific Carbohydrate baking endeavor is Pumpkin Muffins made with coconut flour. Our house smells AMAZING! Cannot wait to frost them [farmer-cheese, honey & vanilla]. Thank you, Comfy Belly chef!

Here are the bakers!

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…