Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Friday, September 25, 2009

Say "Ahhhhh"

This week Eliza had another visit with her dentist. Eliza, being the Queen of Oral Defensiveness will not allow a tooth brush beyond her front teeth and even that attempt at brushing is, well let's just say no self-respecting hygienist would count it as tooth brushing. So instead of brushing nightly, only to have Eliza vomit, we visit the dentist pretty often for teeth cleanings and gum checks.

As our gentle readers are aware, Eliza is no fan of doctors. An average doctor visit, without looking in ears or mouth and just a simple stethoscope to the chest, requires two adults to hold her down, in addition to the poor sod (a/k/a "the doctor") who is trying to listen to her chest. One visit with Eliza and any self-respecting male doctor knows to protect his groin area from an assault. As as a courtesy to said men and their groin areas, I take Eliza's shoes off immediately upon entering the exam room, so that the eventual foot jab to the groin isn't quite so painful as it would be with a sturdy StrideRite sneaker. Eliza's technique is something of a Jujitsu Groin Kick:

The dentist's office offers a particular challenge. Basically, I recline on the dental chair, holding Eliza in the Judo position known as HIZA-TORI-GARAMI (9th leglock or knee entanglement):

(as an aside ... I was on the Judo team in high school, so I can in fact perform hiza-tori-garami and many other painful moves on those of you post negative comments).

Once I have achieved the proper form of hiza-tori-garami, Joyce, Eliza's beloved nanny, puts Eliza in a basic head lock:

At the precise moment that the head lock is achieved, Lily, the wonderful hygienist, swoops in with her nifty tooth cleaning machine:

Lily is quickly followed by Dr. B who takes a good look at Eliza's pearly whites before allowing Eliza to break free from the multiple Judo holds. At the end of this invasion of Eliza's mouth (which probably lasts all of ten minutes), Eliza has clean teeth and is screaming "THIS WAY!!!" while pointing to the door.

Does it sound like a bit of torture? Maybe to some, but it is better for the moment than having the wee one gag every night at the sight of the tooth brush.

But the BEST part of going to this particular dentist is that he could give a rat's behind if Eliza screams, yells or even pukes on his floor. In fact, he specializes in treating kids with special needs who may not be overly thrilled about seeing a doctor or a dentist.

I decided quite some time ago that I was DONE apologizing to people, particularly doctors, for Eliza's differences. If it bothers a doctor that Eliza acts differently than his average pediatric patient, then perhaps he or she should have gone into a geriatric practice rather than a pediatric practice. Or maybe hang up a shingle that says "special needs kids need not apply." In any pediatric practice, children will be behave badly, special needs or no special needs. Dr. B routinely has to tell of parents of special needs kids to stop apologizing if their kids scream or throw tantrums. I am glad Eliza has a dentist who isn't expecting an apology for her behavior and who frankly discourages parents from apologizing.


Jenny G said...

I am dreading the dentist visits with my children (both oral defensive too). You have inspired me to get over my own fears and hesitations and get this done.

MamáChanga said...

Oh, that dentist rocks!

I'd like to put the dentist my girls visit into one of those headlock holds myself. He offered us a wrap hold for Pistol's upcoming filling, I think I'm going to let her vomit & kick him in the groin instead.

Hugs & Blessings!

Anonymous said...


I have been reading your blog for a while and enjoy reading it all the time. I have a daughter who had feeding tube all of her life and she is three years old now and we took out the tube 2 months ago as she started to eat little puree food by her mouth but she has been loosing weight recently because she has food aversion and she is extremely scared to look at the food. What food your daughter has been taking?How about her weight?The doctor said because of the tube our daughter was not taking food so we took that out to see but it made thing worse. Is there any good formula(high calorie which does not have milk or soy) do you know?
Thank you.


Anne, Eliza Grace's mom said...


Eliza has never had a g-tube or an NG tube (except in the NICU). I was opposed to it two years ago and am always debating with myself whether or not I should have had had a g-tube placed since things like medication admisinstration would have been easier for Eliza and we could have avoided episodes of dehydration. Did your daughter have a g-tube or an NG tube? What was the reason she needed it to begin with?

When Eliza was an infant she ate pureed baby foods on the typical schedule. Then she stopped, almost cold turkey. For a year or so I could get her to eat yogurt but by age two she refused that. From the age of 2 to 3 she was on a 99% liquid diet. For some time she was on Resource (now Boost) 1.5kcal formula with Benecalorie mixed in. This gave her almost 50 calories an ounce. We did this because Eliza was only drinking about 12 to 14 ounces a day. This past year I switched GIs and we put Eliza on Boost 1.0 kcal (30 calories per ounce). Her volume intake increased to 24 ounces a day so her caloric intake actually improved. She has also shown an interest in food.

I use the term "food" loosely. On a good day Eliza will eat 1/8th of a slice of cheese, 4 cheese puffs, 4 cookies, a spoon or two of peanut butter (with sprinkles mixed in) and two bites of a bagel or crust of bread. She won't eat a puree, but will have an ounce or so of ice cream.

If your daughter is allergic to milk and soy, could you try Neocate with Duocal for extra calories or goat milk with Duocal? How is her weight now?

I don't think there is any easy answer to feeding issues. I have always used the SOS method of feeding therapy for Eliza. There are some behavioral methods, Kennedy Kreiger, that I understand have been successful with weaning kids from tubes to foods. Have you tried any particular feeding therapies?

Feeding issues stink, don't they?

Anonymous said...

Hello Anne,

Thank you so much for writing in details about Eliza's food and the way she eats. My child is in the spectrum so from the birth she had feeding problems. She could not suck and swallowing was very hard so doctor had to put the g tube in her.She has major GI reflux issue. She has been vomiting last three years. We have tried different medicines and different formulas but nothing help. She has been in prevacid for a long time.Liquid is very hard for her to swallow. Every liquid went through her tube but few months ago she started to take little bit by mouth so two months ago we took out the tube and we were giving pediasure but whenever she took the little sip she felt very bad and tried to vomit and I could tell she was in pain so we talked to the doctor and she said may be she was not tolerating milk so I searched in the internet and found out rice/almond milk is good but don't have lot of calories and the children like her ago needs lot of fat in the diet so I have been very much confused what to give her and how to boost the calorie and nutrients. The pediasure also have 30 cal. in one ounce and with tube we couldn't tell how much discomfort it was causing but we saw she was vomiting but we could certainly saw that when she was drinking.If she can't tolerate cow milk product can she tolerate goat milk?She has one feeding therapist but she is not that helpful and I heard about kennedy krieger but taking her would be so hard and now her tube is gone and she is not eating well I don't know what to do.She has severe anxiety and panic issue because of her diagnosis so doing any test would cause her severe trauma and she can't take that.We have been feeling very helpless.I don't know whether the muscle in her esophagus is tight so that's why she can't swallow but how to tell?
You are such a nice person to give me the suggestions and I love your blog and Eliza is so beautiful and smart!Thank you.


Anne, Eliza Grace's mom said...

Hi Kathy,

Has your daughter had any allergy testing done or an endoscopy or swallow study? If she has trouble swallowing liquids there are thickeners that your GI could recommend to add to her milk/formula, like Simply Thick.

If she is allergic to cow's milk, she might be able to tolerate goat's milk. But perhaps you should try something like Elecare or Neocate Jr.? Can you get a referral to a nutritionist? A nutritionist could help you build a diet around the things you daughter can eat and tolerate.

I hope you get some answers soon.

Anonymous said...

u r of d most helpful , inspiring , absolutely wonderful micro-preemie moms , I admire u a lot .My daughter also born at 27 wks but she had IUGR so measured lesser .ur fantastic is allI can say