Another Resource

Resources for families dealing with chronic medical and/or disability care can be the difference between tension and relaxation.

Go to www.govbenefits.gov when you have time to enter the portal.  There are different paths to follow here, and completing the questionnaire will take a little time.  There is also a Benefits Quick Search. You never know what you might find.

For those of us who wrestle with taking government benefits and making taxes increase, I like Dennis Miller’s statement:  ’Help the Helpless, not the Clueless’ – or something to that effect.  When we genuinely need help we cannot find elsewhere, hopefully our country/citizens can help us out.

Air Reduction in Blended Food

When making blended food for medical reasons to feed to my “disabled” daughter via her g-tube, there are several goals:

1.  excellent nutrition

2.  adequate calories

3.  appropriate volume

Sometimes it is a challenge to line all three of those up in the same batch of food!  The most difficult one has been appropriate volume.  I feed her 4 times a day at 3 hour intervals.  She is 11 years old and can accommodate 2 cups, or 16 ounces of food in her stomach.

I puree whole foods together with liquid so the food will pass through her tubing into her stomach. Using a Vitamix introduces a fair amount of air into the food.  Over time, this air will bubble out of the food as it sits in the refrigerator.

However, I just read this great information on another site today:

“When you get the Vita-Mix there is a little trick about getting the
bubbles out. Once you’re done blending your mixture, turn the Vita-Mix
down to 2 on the dial and let the blender mix for a little while. Then move
the dial down to 1 and let it mix a little longer. This gets most of the
bubbles out of your mix.”

Word of caution:  the instructions on the blender say to not blend on low for more than 2 minutes as it is hard on the motor.

Having the air released from the food means it takes up less space in the stomach, which should reduce that “too full” feeling, as well as allow for maximum calories per feeding.

Winter is Here and I’m Happy

Kids with disabilities can be especially prone to illness. Our daughter has multiple disabilities and is fed by g-tube for medical reasons.

Fall has been a very difficult season for our household this year.  It is always difficult for me as my allergies and asthma go through the roof. I am so thankful that Little Miss doesn’t have asthma and her allergic reactions are pretty mild.

I may have to change my 11 year old daughter’s nickname to “Little Missed” as the  records show 17 days of school unattended!  We’ve had a variety of illnesses – mostly upper respiratory things.

Two important helps:  Vitamin C and Vitamin D

Vitamin C has helped with all the runny nose, sneezing, congestion stuff.  I crush 1000 mg of Vitamin C (Little Miss weighs 75 pounds and can handle this amount), pour it into the syringe, pull food up into the syringe and give that to her 3 times a day in her blended meals.

Vitamin C is safe in large doses as far as my research can tell but I watch for two things:

1. No response to the Vitamin C within 24 hours means it most likely is NOT good Vitamin C.  I switch to another brand.  Does NOT have to be the most expensive one.

2. Diarrhea means too much vitamin C.  I wait a day and reduce the dosage by 1/4.

Vitamin D is reported to boost the immune system and here in Chicago we get very little sun in winter to build Vitamin D in the body.  Vitamin D is one of those Vitamins that can become toxic in high doses.  Research conflicts but I give Little Miss only 400 IU to avoid toxicity.

So why did we get sick this fall if we are doing all the “right” things?

I prefer to ask “Would we have been much sicker if we had not?”

I think so.  As it is we had no overnight hospital stays and I am very thankful for that!

Granulation Tissue

G-tubes force the body to go to great lengths in its attempt to “close the hole”.  One of the body’s responses is granulation tissue.

Ask your doctor for a prescription for Ciprodex ear drops.  This mom says it worked in two days, eliminating ALL the granulation tissue!

“I have been THRILLED with the results of Ciprodex on Abby’s granulation tissue. She has an awful time with that, and the doc gave us a prescription last week. It cleared up the granulation tissue in 2 days…completely gone! So anyone having a bad time with that, try asking for a prescription for Ciprodex ear drops….it’s worth a shot because it sure made a huge difference for us!
Angela”

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.