Tips Picture Outing Preparations

My step-daughter, Hannah (7 years old), has a chromosomal abnormality and has mental retardation. It used to be very difficult to take her anywhere. Hannah loves Barney and watches video tapes over and over again. I wondered how she would respond to just the music so I bought the Imagination Island CD because they are songs that Hannah knows from the Imagination Island video.

By putting the CD player on in the kitchen, Hannah will sit at the table and eat all of her meals, which was very difficult in the past. Often, if she were forced to sit at the table and eat, she would just plain not eat. Now she lives in the kitchen!!

Getting to the point of going out... I bought Hannah a portable CD player and we take that with us when we go out. She absolutely loves it! The player we have allows you to program her favorite songs and repeat them, which is comforting to her. To make things even better, she wears a portable CD holder around her waist so nobody has to hold it for her.

This one discovery has made our life and Hannah's life so much better and easier. Maybe it will help somebody else’s life as well. - A.S., city and state unknown

Besides the obvious "keeping a bag packed," I like to pick up videos and special toys for Tim's sudden and frequent admits. We keep a bag in the trunk of our car, and even when we have to do something like a quick IV replacement at the ER, we have a special something for afterward. It has made Tim calmer, as he is able to anticipate, "When we're done, do you have a surprise?" I often get things at garage sales, so it doesn't have to cost much. It's just the thought (ahead) that counts and helps! - K.H., city and state unknown

My 18-month-old daughter is still unable to sit up on her own unsupported, therefore, restaurant trips are especially challenging. I found a device in a local Babies R Us that you put onto the very unsupporting highchairs in most restaurants and it wraps around the child to help support a sitting position. I have also seen this device in the catalogues "One Step Ahead" and "The Right Start." They are made of cloth with heavy velcro attached. It is very comfortable for my daughter and doesn't look "odd." - F.D., city unknown, NC

As it quite often takes some time to find everything to equip Madeline to go out, I always keep a small sports bag which has a couple of pockets packed ready to go. In it, I keep a couple of old plastic soda bottles with screw caps so I can make a couple of drinks to take (depending on how long we are going out for), her drinking cup which has a screw cap (a Tomee Tippee no-spill beaker), a few bibs or towels, pads (3), small box of wipes for changing, and a larger towel so when she needs changing, I can use it as a change mat (I can't get a mat to fit Maddie, so I must make one from good quality plastic and a soft towel). I also take a brush (she always has wild hair) and a spare outfit, just in case. - T.H., Bristol, UK

My daughter is 4 years old and has multiple disabilities. However, she is very bright and has quite a personality. When visiting hospitals or physicians for routine check-ups, I always take recent photos of her in any equipment she has. The photos are kept in her notebook in regular photo album pages, and I try to keep them updated. A lot of her equipment is homemade and hard to describe, so the pictures come in handy. Also, when sending summaries to new professionals, I add a recent photo of some silly thing she was doing; this helps the new guy not to forget so soon. I also try to collect business cards of all professionals we see and keep them in her notebook as well. This gives me a quick reference to any numbers or names I need. - C.G., Grapeland, TX

My youngest daughter has a very complex and unusual disease; she has Complex IV Deficiency (mitochondrial disease), as well as panhypopituitarism, autonomic dysfunction and CIDP. Here's a suggestion that has helped us immensely:

I have a backpack that I take everywhere with Caitlin. The backpack contains everything that I might possibly need should Caitlin "crash" at the most inopportune time. The pack includes a stethoscope, BP cuff, glucometer, thermometer, stuff to measure fluids in & out, etc., and several little pouches (containing snacks, extra meds, etc.). It also includes a notebook to keep notes in, as well as a small address book with all of my emergency numbers, including our pediatrician's number. The notebook includes five sections:

1) DAILY SCHEDULE - this is one page that includes what and when we do everything that is essential to keeping her stable on any given day.

2) MEDS - This includes a list of meds written as the doctor orders and includes the times and dosages to be given.

3) HOME CARE - This has a list of all the treatments, interventions, therapies etc. that it takes to get her through one 24 hour period.

4) HOSPITAL CARE - It includes do's and don'ts that we have encountered in the hospital. For instance, we use D10 normal saline, instead of D5 half normal saline, for IV fluids. This hopefully keeps us (them) from making the same mistakes over and over again.

5) Last but not least: RECENT MEDICAL SUMMARY AND HISTORY - We try to update a summary, at least yearly. My pediatrician dictates a fairly detailed, but as brief as possible history and summary, geared to be read by a physician in any ER, anywhere, that is totally ignorant of mitochondrial disease, should we all of a sudden show up.

We also keep a chronological summary in here that includes all the vital information, as well as major milestones in her disease. It includes the individual evaluations done for her disease as well.

If you don't need the whole backpack, then the notebook is the key. Most doctors appreciate the info and are a little more eager to listen to parents when you have a little documentation. - J.S., Russellville, AR

My daughter is multi-diagnosed and (unfortunately) frequently makes emergency overnight stays at the hospital. I was finding that in the panic of the moment, I would forget something that she needs...or that I would like, at home. Consequently, once at the hospital, I would discover this and have to wait for my husband or a friend to get the time to bring it to me.

To remedy this situation, I packed a small bag (like a make-up case) for myself that I now leave in the closet by the front door. This little bag has samples of perfume, lipstick, foundation, deodorant, a toothbrush, toothpaste, mirror, comb, brush, contact case, contact solution, a small box of change for the pop machines and some individual serving packets of coffees, teas, etc. I also packed a small bag of the items I would frequently forget for my daughter. Using a small diaper bag, I packed one of her favorite blankets, pj's, some books, a stuffed animal, one of her specially adapted cups and some small, quiet toys. This way, I just grab these two bags on the way out the door.

This has worked wonderfully for me. Going to the hospital, especially on emergency runs, is unnerving enough...now I don't have to worry about forgetting something that at least makes the visit a little more bearable!! I have also found it easier all around if I always check in the morning and evening that her main diaper bag is fully packed and ready to go shopping, to therapies, doctor visits, testings, hospital...you get the picture. - T.L., Batavia, IL

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