How Do You Explain It?

Looks and questions.  Curiosity.  Little Miss gets fed via g-tube in public quite a bit.  Medically it is the thing that keeps her alive.  She has some “disabilities” but the only chronic threat to her life is her feeding limitation. Kids look – with their little open faces – they don’t hide their curiosity.  Adults are respectful (generally) and not invasive.  Of course we make quite an appearance – a “giant” syringe, a tube going to her stomach, up under her shirt, and this container of what looks like pea soup on my lap.

I’ve come up with a short answer to the looks and to the questions:  Her brain played a trick on her mouth and her mouth thinks it doesn’t like food.

I like this explanation.  Kids and grown-ups alike “get it” and it is a short answer that doesn’t embarrass my daughter and even helps HER understand it more.  It isn’t her fault.  We’ve done everything we can and we haven’t made any significant progress.  I wish it were otherwise, but meanwhile we have to be able to put it in perspective and shrink it down to an understandable explanation.

Need Help at School?

Having an 11 year old daughter with multiple special needs, I have encountered a few road blocks along the way as I pursue the best education the public school system offers. We live in a fantastic school district and have avoided many of the problems I’ve heard abou from other parents.

Right now we are having a problem with transportation issues. A child on the bus screams. SCREAMS at the top of his lungs. My Little Miss has a sensitivity to loud noises and is terrified of the bus since this screaming began.  I now drive her to and from school (12 miles each way).  The transportation department “has no options” for me at this time, but they are checking. My daughter’s teacher is wonderful and is working with the other student and offering suggestions to try so Little Miss can cope.

That’s all well and good if I don’t mind using a crane to lift my daughter into the bus as I am not strong enough to force her onto the bus (nor do I want to).  But there is an alternative:  The Section 504 Plan of the Rehabilitation Act of 1973

Section 504 covers qualified students (qualified means being at an age at which students without disabilities are provided education – so up through high school)with disabilities who attend schools receiving Federal financial assistance. To be protected under Section 504, a student must be determined to: (1) have a physical or mental impairment that substantially limits one or more major life activities; or (2) have a record of such an impairment; or (3) be regarded as having such an impairment. Section 504 requires that school districts provide a free appropriate public education (FAPE) to qualified students in their jurisdictions who have a physical or mental impairment that substantially limits one or more major life activities. Major life activities include functions such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.

Sounds complicated, but basically means that if your child has special needs they are most likely protected under Section 504.

So now what?  I  did a google search using “School district 54″  and the words “Section 504 Plan” and I came up with our school district’s policy document about Section 504 of the Rehab Act of 1973.  It included the procedures (all I have to do is make a phone call) and the people to contact.

I called the transportation department this morning and they will get back to me in the next day or so.  I emailed my daughter’s teacher and she is working on helping to resolve the problem. By the end of this week I will know how much we can accomplish without involving the Section 504 Plan.

I’ll keep you posted.

Reasons to Feed Homemade Blended Meals

When a person is fed via g-tube for medical reasons, or due to a disability, there are several reasons homemade blended meals can be better than formula.

There is no question that formula is convenient. Pop open a can, pour it into a bag, turn on the pump.  Period.

Here are reasons I prefer homemade blended meals:

1. It feels less “medical”.  It is a meal, not a prescription.
2. It is more portable. No IV pole, no bag, no pump. We can go from room to room.  She knows when I call “tummy time!” it means it is time for the next syringe and she comes to the dining room. It is easy to take along in the car or to the park.  We have a few coolers – a soft-sided one with a shoulder strap (the kind designed to keep a six-pack cold at the beach), a soft-sided one on wheels for longer outings, and a hard-sided one for longer trips in the car.  We feed her anywhere, without fanfare.
3. She can eat what we eat. Smoothies for breakfast! Sometimes we just blend up what we’re having for dinner and feed that to her.
4. Listen to the nutritionists:  it is better to get your vitamins right from your food….  my interpretation of that:  whole food is better than formula.  It hasn’t been reduced, extracted, infused, etc.
5. I can use organics for the fruits and veggies most likely to contain pesticides:  nectarines, celery, pears, peaches, apples, cherries, strawberries, imported grapes, spinach, potatoes, bell peppers, raspberries, Mexican cantaloupe, green beans, apricots.
6. I can avoid foods she has no tolerance for: dairy products,  and add the vitamins she needs more of like calcium, omega-3, etc.
7. No constipation.  Eating real food includes naturally occuring real fiber.  No constipation ever for us.
8. When she burps, it smells like the food in her blended meals.  She becomes accustomed to those smells and tastes and that makes her more open to eating those foods.
9. No sour smelling, formula-stained clothing.
10. It costs me far less to feed real food than formula.
11. She gets to feel more “normal” since she isn’t attached to a pump.
12. I get to actually make the food I feed her.  I like that.

What to Feed When They’ve Been Sick

My daughter has been fed by g-tube for almost 10 years – for medical reasons. Her disabilities are largely neurological and her brain confuses her mouth into thinking eating is a bad idea.

Recently Little Miss was ill with a fever and vomiting.  One advantage of a g-tube is that I can give her water and Pedialyte  in measured amounts and frequencies.  This allows me to keep her hydrated and avoid hospitalization if at all possible.

It took 5 days to overcome the vomiting and fever and get Little Miss rehydrated. Then what?  We tried to move to our usual blended food, but she immediately began vomiting again.  Even diluted blended food resulted in vomiting. Waiting several hours and hydrating with Pedialyte in the meantime, we reached another opportunity for feeding.  The question was, what to feed her? Neocate Jr resulted in vomiting. Back to square one. Water. Then Pedialyte. NOW what to feed her?

Ramen noodles: like eating saltine crackers for the rest of us.

1.5 cups of hot water and the noodles and spice packet:   5 – 7 minutes later all of it into the blender. I pour the blended soup into a bowl, I place the bowl in a sink with a few inches of ice water in it. The blended soup cools to body temperature  and is then easy to feed her via extension tube and syringe. It makes a wonderful next step in the journey to regular blended meals.  With the spice packet, the calories total 390.  One day of Ramen noodles – 4 to 6 a day, and we are back on the path toward what WE call normal life!

helpful clamp for feeding

I was visiting a blogger who has been tube feeding her daughter for a couple years. Here is a handy gadget someone should have told us all about:  clamp to prevent disconnects from tubing

I could have used this years ago when Little Miss was tossing and turning all night and the formula got pumped into the bed instead of her tummy!!

Neocate Jr vs. My Recipes

Preliminary evaluation of the COST of Neocate Jr vs. any of my blended meals for g-tube recipes:

over $1000 per month to feed my 11 year old g-tube fed daughter via Neocate Jr.

Less than $300 per month to feed her using my recipes and my super duper blender.

More info to come. I’m waiting for contact from Neocate for more information.

Change and Management

Change is a constant, isn’t it?  I don’t usually MIND change, but when the change isn’t a “positive” change I have to deliberately and consciously manage the change to keep from getting discouraged.

As we continue to slog through the economic downturn I’ve reached a decision.  Our weekly trips to the horse barn are going to stop for a while.  Little Miss gets three therapies on the same day each week at the barn. I have seen improvement in her physical stability, her thought organization, cognition and conversation continuity, her visual scanning and fine motor skills. Her big brother goes out with us and has been taking riding lessons.  They both LOVE riding and being around the horses.

As the steward, or manager, of the household I have to make decisions I don’t always enjoy. However, to parent kids – one with chronic complex needs – seems to require a particularly sagacious management style. Conservation is required.  I have to conserve energy, my own primarily.  A reserve of energy is necessary in order to handle whatever each day brings.  There are always unexpected events (medical or otherwise) that drain energy and patience. I have found ways to make our durable medical goods last as long as possible (link here).  I monitor what we expend and attempt to not overdo (or under-do) anything. Of course you have done this as well- whether it is related to activities, commitments, finances, energy, leftovers, clothing, vacations, etc.

Little Miss has been on a countdown for 3 weeks leading up to the last trip to the horse barn – next Wednesday.  She seems okay with it so far.  I know there will be a grieving period and some anger.  I have to conserve some energy and time to help her through her process. Otherwise I become quite impatient.

I have managed to make a decision to change. I’ll have to manage the process and the results and the potential change of this decision at some point in the future. I’ll have to manage my own energy and emotions as well. This parenting job is all about change and management.  SAHM maybe should be changed to SAHMHM:  stay at home mom and household manager!

Nearly all these definitions from Merriam-Webster Online seem to apply!

Main Entry:  manage

1. to handle or direct with a degree of skill: as a: to make and keep compliant <can’t manage their child> b: to treat with care: <managed his resources carefully> c: to exercise executive, administrative, and supervisory direction of <manage a business>

2. to work upon or try to alter for a purpose <manage stress>

3. to succeed in accomplishing <managed to escape from prison>

4. to direct the professional career of

   well that last one isn’t pertinent YET – who knows?!

Variations on a Theme

In the world of home-made blended meals for g-tube, there are a wealth of options! Generally I avoid foods that will thicken too much or become glue-y, as well as cruciferous vegetables. Recently our family had a wonderful salad with parsley, feta cheese, red onions, garbanzo beans, cucumbers, toasted pita bread and a lemon juice/olive oil dressing. I blended this up for Little Miss and added red kale and cooked ground beef. It worked very well. The cheese did not cause any problems whatsoever.

The added benefit was the joy of feeding our girlie-girl the same thing we were eating and being able to do it on the spot.

Keeping an open mind to possibilities as we feed our kids makes it all easier and less stressful. At least that’s my experience.

G-Tube Feedings and Dentistry

When feeding via g-tube for medical reasons, typically the person being fed does NOT eat orally.  My 11 year old daughter is fed 100% of her calories via g-tube, but she does drink water every day.  It is unlikely she will ever have cavities because of the absence of food in her mouth.

However, we still go to the dentist at LEAST once a year and we brush her teeth daily.  She hates it, but we do it.  Oral health is important to overall health and the evidence of that seems to increase regularly.

We use an organic toothpaste, a teeny tiny very soft toothbrush and we do not brush very long. We count to 20 slowly for the upper teeth and another 20 for the lower teeth as we brush. (That way she knows the end is coming.)  We do not floss as there is not food between her teeth.  Her teeth are white and shiny and it makes for a beautiful smile!

G-Tube Feeding on Recent Travels

Traveling with our special needs princess who is fed by g-tube for medical reasons can be quite an adventure in endurance!

Our recent trip went very well, despite the fact that I forgot a few things.

One of the adjustments to our traveling paraphernalia was the addition of paper plates! As you can see in the photos below, I use them for both resting the tube and syringe as well as keeping track of how many syringe-fulls I’ve given.

after feeding three syringes, it looks like this

at the end of feeding it looks like this

Here’s a closer look at how I notate the process:

numbers denote minutes on the clock and hash marks denote number of syringes given

After several years of giving feedings via g-tube, it becomes mindless. I quickly forget how many syringes I’ve given and when.  At home, I use the kitchen timer and the wall calendar to keep track of when and how many.

On a trip, I mark both the time given (minutes only) and the number of syringes given on the paper plate. Afterwards, I can just throw it away!

I also took an 8″ diameter plastic bowl along and dishwashing soap. This made cleaning the extension tubes and syringes easy, regardless of location. (Hotel bathroom sinks do not seem like the best place to wash her gear.) The bowl is also handy in the car in case of vomiting!  *yuck* Fortunately we had no vomiting on this trip!