New Symptoms. What to do.


Over the course of my daughter’s 14.5 year life, we have had new symptoms pop up every couple years. This year was no exception. She began fainting. It first happened on the beach at 8:00 in the morning. If it … Continue reading

G-tube Care and Pointers

Instructions about care of g-tubes was woefully short 9+ years ago when Little Miss got her first one. Doctors, nurses, surgeons, hospitals all fell short in helping us know how to best manage a g-tube.  I have learned many things:

1. Keep it dry as much as possible. Even let the sun get to it once it is healed. At night when sleeping, uncover the area to allow air to circulate.  One of our biggest problems emanated from too much moisture seeping out and onto the skin.

2.  Once the site is healed, bandages and ointments are not usually needed. A “flat”/low profile button is easier to manage than one with a tube protruding.  If ointment is prescribed for hypertrophic tissue, etc. be SURE to get it only on the designated area.  (Yes I have a story about this.  Maybe another time.)

3.  If anything looks strange, have your doctor LOOK AT IT. (Yes I have a story about this also. Maybe another time.) All the verbal description you can manage doesn’t compare to having it eye-balled by a doc.

4.  Check the balloon volume every 4 – 6 weeks. How does the volume reduce?  I don’t know.  But it does.  If it has reduce significantly there must be a leak and it is time to replace the button.  Little Miss’s balloon has 4 cc or ml of water in it usually.  This is enough to keep the whole thing from popping out, without taking up too much space in her tummy. 

5. Insist with your insurance company that you need at least two spare buttons on hand.  We had only one spare years ago and when we had to change the button and the new one leaked we were up a creek.  Currently, we have two at home and one at school. Just in case.

6. Keep an old button and glue it to the tummy of a doll.  You can even punch a hole in with a nail or any of multiple tools and render a doll g-tube fed. This was helpful to our daughter although she doesn’t care about it now, at nearly age 11.  Kids always like knowing they are not the ONLY ones!

more pointers to come…. stay tuned.  If you have any questions, just drop me a comment or email!

Handling discouragement

Whew.. life is hard.  Life as a parent of a child with special needs is harder.  Ongoing caregiving of medical needs is hard. Whether it is therapies, assistive devices, g-tubes, trachs, seizures, wheelchairs doesn’t matter.  It is hard. Very hard.  It is exhausting and lonely.  It is wearying.  

Weary is defined as exhausted in strength, endurance, vigor, or freshness; having one’s patience, tolerance, or pleasure exhausted. Well now that we’ve straightened that out (as if we didn’t know) what do we do??? Burnout is not an option when it is your own child. You gotta be there.

I have found two important tools for myself.  I’d love to hear what you do….

First, I get out. Alone. I walk around the block, talk to no-one. I am an extrovert, but walking around a pond by myself not even trying to think is amazingly helpful to me. I don’t even understand why.  If I cannot get away from the house by myself on a given day, I go out on my deck and hide from everyone.  I have to find a spot where I cannot hear the voices of anyone I know.  It is so peaceful.  

Second, and this is the one I hate the most, I grieve.  Yeah, cry, and get all puffy eyed.  But first I recall all that I am dealing with, all the duties, all the disintegrated dreams, all the losses of every kind. I want to grieve specific losses.

Grieving seems wrong somehow: “I should be grateful.” “Does this mean I don’t love my child?” “Other people have worse situations.”  Yes they do. So what? That’s my honest response. This life with its shattered dreams  and heavy workload is not anything like what I envisioned.  It is filled with hardship and that is the truth. A scale that measures the magnitude of your grief does not exist.  

Yes my daughter is delightful. Yes I love her like crazy. Yes she makes me laugh and I enjoy spending time with her more than plenty of other people I could choose to be with.

  • No she will not ever be able to tie her shoes. 
  • No she will not ever be able to feed herself. 
  • No she will not ever be able to multiply numbers. 
  • No she will not be able to clean her own feeding tubes and syringes. 
  • No she will not be able to manage her own health care. 
  • No she will not be able to have children and raise them. 
  • No she will not ever be safe on her own.

How can  I not cry about that?

Yes I still have lots of fun in my life. Yes I have good friends that I adore. Yes my husband is a wonderful man. Yes my other kids are fantastic. 

  • No I will not ever stop worrying about her. 
  • No I will not ever be an empty nester in the truest sense of the word. 
  • No I will not be able to go back to school later and pursue another line of work. 
  • No I will not have the freedom in the later years of my life that would allow me to travel, etc.
  • No I did not choose this life I am living. 

Is it wrong for me to be sad about any of that? 

No.  I don’t think so. To deny emotions is to hold onto them.  They don’t evaporate. To express them is cathartic and cleansing. Only then can I, can we, take a deep breath and continue on in this life we’ve been given. Only after the catharsis can we help our wonderful brains take over and say “I love this child. I can do this.”

Sometimes it doesn’t feel like we are living life.  Sometimes it feels like life is living us.  That we are the power source for the lives around us.  But we are more than batteries. We are more than the pedals on a bicycle. We are women (usually). We are strong, dedicated, emotional women.  

Whether anyone else sees it or not, we are heroes. Even heroes need time to themselves and a place to let tears flow.

Managing Fear in Medical Emergencies

Emotions in medical crises are predictable and manageable! Expect to feel any/all of the following:

  • Fear
  • Anger
  • Suspicion
  • Helplessness
  • Discouragement

When our body, or the body of a loved one, signals trouble, fear arrives on the scene faster than an ambulance! Fear can be an overwhelming emotion, blocking our ability to make sound decisions and ask good questions.
What do we fear?

  • What might happen
  • A repetition of what has happened in the past
  • The unknown
  • Inability to control the outcome

Fear has a tendency to help us jump to worst-case scenarios. Dread takes over and can move into panic.

Anger is often present. Frustration with a recurring problem, and/or dislike for the feeling of fear can help us to move into anger. Anger is a more comfortable emotion than fear, so we go to anger.  We feel more in control when we are angry.

Suspicion can also arise out of our fear and anger because we wonder whether our situation can actually get better, or will it get worse, how much the hospital or medical staff really knows, cares, pays attention, etc. Helplessness and discouragement arise when we fear we have a limited ability to affect the situation.

All these emotions are very useful! They alert us to the reality of a problem we need to manage. When we switch into management mode, the emotions can recede, allowing us to think clearly.

To switch into management mode, it can be helpful to briefly recall a skill you acquired during your adulthood. For instance, balancing a checkbook, finding a mortgage, painting a room, choosing car insurance , etc. Imagine yourself actually performing that skill. This thought process can help you switch into a more confident, competent frame of mind. Managing a medical crisis, talking to doctors, participating in the decision making process all require a degree of confidence. You do not have to understand everything about a mortgage to choose one. You do not have to understand everything about your body and medicine to make wise decisions.

Here’s an example from my own life. One of my sons at age 6 traveled with us by airplane. On the return trip, his ears hurt to such an extent he could not stop crying. Drinking water, chewing gum, yawning were of no help whatsoever. He was a little better at home, but within two days he had added fever, headache, and stiff neck to his earaches. Of course this all culminated at 7:00 on a Friday night: too late to call the doctor for an appointment! I knew these were the symptoms of meningitis. I was quite scared because meningitis can be fatal within a short time, and/or difficult to cure depending on which type of meningitis is present.

I needed to comfort my son and my husband and make some decisions with the doctors. If my son could sense my fear he would become more afraid, making exams and tests more difficult. I had to calm down. I took deep breaths, focused on being in capable-adult mode and calmed down. The fear was still present of course, but not in control.

At the local emergency room, we began a series of tests. After several tests telling us next-to-nothing, the ER doctor wanted to do a lumbar puncture (also known as a spinal tap). In this procedure, which is rather painful, a needle is inserted between two bones in the spine, directly into the spinal cord to obtain fluid. Examining this fluid determines whether meningitis is the correct diagnosis. It seemed critical to rule out or confirm this disease.

Something inside told me this was not meningitis. I trusted myself. I began to ask questions. I said “No” to the lumbar puncture. It was the right decision. The ER doctor sat down and reviewed the history, reexamined my son and came to an accurate diagnosis. It was not meningitis. Treatment resolved the symptoms within 48 hours and health returned within 10 days.

If I had not pulled out of fear mode, the doctor would have performed the lumbar puncture. Ruling out meningitis through that test, the doctor would still have to sit down and rethink, reexamine my son and find the correct diagnosis.

Take time to breathe and become clear-headed in emergencies. It will serve you and your loved ones very well.

The Zoo

Yup the zoo.  Five 8 – 10 year olds with special needs, 5 adults and two little tag along siblings.  The parking lot is a field of buses. There are hundreds of school age kids at the zoo.  

We walk from the camels to the zebras.Zebra

We walk.






From the hippos and elephants to the lions.

Divin' inWe saw penguins and polar bears.


We just dove in and saw all there was to see! …and then we walked some more. 







It rained a little bit and we got a little wet.  polar bear with fish in mouth

But we kept walking. 








And we saw children stare at our kids, and I mean stare. So how do we handle that?


I guess when it comes right down to it, everybody was staring at everybody and every creature! 


Little Miss went to Partners Club today and came home singing “We are different on the outside, but on the inside we are all the same!”  She just kept walking and singing and she made sense of it. 











Black rhino

Black rhino








I guess sometimes you just have to keep walking and let things sort themselves out.



101_3291No matter how goofy each of us looks, and for whatever reason, on the outside we look different, but on the inside we are all the same.

Which is not to say I am a baboon. No way.

In The Ditch or How this all began….

Beginning at 5 months of age, my  sweet baby daughter had trouble gaining weight. Everything seemed to go well until that point. Four ounces of weight in one month was a huge concern to me. Her primary care physician thought she was just going to be tiny!  He told us to come back in 3 months!  This was unacceptable to me, so I scheduled a follow-up appointment for one month later.  BEFORE AND AFTER PHOTOS HERE

At that appointment she had gained only 1 ounce (instead of 1 to 2 pounds). The doctor stuck by his assessment.

Second and third opinion physicians used words like wizened, malnourished, failure to thrive, etc. We worked with a lactation (breast-feeding) consultant for a few months without progress. We were then referred to a physician at a major children’s teaching hospital. That physician was the head of their diagnostic clinic. This seemed like great news!

He was certain I was too old to nurse (43, so yeah not 25) and started daily naso-gastric tube feedings, since my daughter (now 8 months old) would not take a bottle. She still did not gain weight.  Eight months later, the results had not changed despite numerous appointments, tweaking the program, testing and time.

For reasons unknown to us a surgeon wanted to talk with us. She recommended a g-tube, and said our daughter was slowly starving to death.

The diagnostic clinic doc said it wasn’t necessary, that there was still time to work on the n-g tube. We opted for the g-tube insertion.  When our daughter’s surgical site would not heal the surgeon had us move to a picc line (which failed 4 times) and eventually a central line. Our daughter then gained weight like crazy on hyperalimentation feedings (intravenous feedings that bypass the digestive system and are dumped right into a chamber of the heart).   After 2 months the g-tube site had healed and our little miss looked like a cute little chubby bunny with all her weight!  See the before and after photos here. 

During this time we entered the early intervention program (dept of education program for at risk 1 – 3 year olds), and began seeing an occupational therapist, a speech therapist, a physical therapist, and a developmental therapist.

The O.T. said our daughter had sensory integration disorder (now sensory processing disorder.)  When we provided research on SPD to the diagnostic clinic physician and tried to discuss it, he refused and even said he would not read it. He thought we were indulgent and foolish and referred us to a child psychologist.  He believed that was the only logical cause of the refusal to eat.  Subsequent feeding clinics in different parts of the country have said otherwise.

The primary care physician and the diagnostic clinic physician each made significant errors in diagnosis and treatment. Our daughter has suffered much as a result of these mistakes. Unfortunately, there have been additional mistakes since that time. Some clearly avoidable. We have also acquired three new docs on our team who have been OUTSTANDING!

The thing I have learned from this is to ask lots of questions, write down the answers, the treatment, record statistics (weight, etc.) and get second or third opinions. I trust myself  as Advocate In Charge more than I trust the medical doctors. I do not believe their intentions are malicious, but I think there is a problem in the system.  Doctors are extremely specialized now and there is no Physician Who Knows Everything to oversee a complex case. 

I never leave my daughter with anyone else while hospitalized, other than a trusted and courageous family member. I take the position that I am in charge. Anything that is done to my daughter has to go through my permission process first. I am courteous, professional, and good-humored. Also tenacious. It has paid off. Hospital staff has been surprised at times, but my daughter has received better care since I have become so proactive. 

See my posts in Free Stuff (above).  The keep asking questions and fear  posts have questions to ask the doctors and suggestions on how to deal with the fear that naturally accompanies complex medical issues! 

My girlie-girl is doing quite well now.  We are grateful and happy!