6 Feb
I hate the times when I’m nearly done feeding her, she gags because she has a hair in her mouth and the whole feeding ends up on the floor.
Not only do we have to wash her, change her clothes, clean the floor and whatever else has gotten the splashdown, but we have to start the feeding schedule all over again! Sigh. Frustrating!
5 Feb
27 Jan
Little Miss wants to keep her newly cleaned teeth white and shiny! She gets her toothbrush out and sorta, kinda brushes them. Reminds me of air kisses.
I look at her. She looks back. Pauses, ”I have to be very careful of my teeth. They are fragile.”
Me: Really, honey, teeth are VERY strong! Like bones!
Her: Strong? Really?
Pauses again.
“Hey Mom, what does ‘fragile’ mean?”
25 Jan
Clean the syringes, make the food, check the tubefeeding groups, journal, blog, doctor appointments, feeding schedule, life skills, anxiety management (hers not mine), nutrition, sensory exercises, loose teeth, transition to junior high…
the list goes on.
and on.
and on.
I’m tired of focusing on it, of managing it all. Tomorrow I am taking the day off. I just don’t want to think about ANY of this stuff. Just for one day.
or maybe a week.
24 Jan
Little Miss went to the dentist this past week. $450 out of pocket, but that is not the story this time.
Since she eats nothing, or next to nothing, by mouth, there is virtually ZERO risk of cavities. We still get her teeth cleaned once a year to make sure all is well.
Dr. Wonderful-Dentist said “Her other front tooth (see photo for the one tooth in front look) is VERY close to popping through! Her smile will be so pretty! 
AND she has six loose baby teeth!”
Today Little Miss complained of her tooth hurting. Yesterday when she complained, an ice pack took care of the pain. Not today! Tylenol didn’t help either.
Little Miss moaned and paced the floor. She stopped suddenly and gagged twice. Little Miss then sighed heavily and smiled! The pain was gone!
We had heard something skitter across the floor after her second gag. We looked around and spotted a little white thing on the floor half way across the room. YES! It was her tooth.
Extraction by gagging, followed by a smile. I’m going to tell the dentist about this new method. Maybe she’ll use it with other patients!
9 Dec
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.
8 Dec
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.
5 Dec
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!
10 Nov
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”
16 Sep
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.
Crossing the bike trail with....