12 Tips for Better Doctor Visits with Kids

We have a lot of experience with doctor visits, so here are some tips that we’ve learned the hard way. My present to you.

• Try to schedule first thing in the morning. The doctor will (hopefully) still be on schedule, you’ll have shorter waiting times, and there will (usually) be fewer people in the waiting room sneezing and coughing all over you.
• Dress your child in clothes that are easy to remove. Nuff said.
• Bring another adult whenever possible. I know - hard to do. If my husband can’t come, I sometimes call up my sister or aunt who live close by. It’s a lot easier to listen to the doctor and ask questions when there’s someone else there to help with your child.

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Psychmamma is the contributing editor for Special Medical Needs. She writes at Psychmamma where she covers life with Jenna, her "spunky little two year-old who was born with a triple intestinal atresia." Her blog is also the home of Special Needs Sundays.

G-Tube Issues

When we brought Jenna home from the hospital, our pediatric surgeons strongly recommended a surgery to place a “button” for gastronomy feedings. We resisted, naively believing that her feeding issues would resolve in a few months and that we could manage nasogastric (NG) feedings (a tube inserted in the nose that goes to the stomach) until then, avoiding the need for surgery. It wasn’t long until we realized that NG feedings were very hard to manage with a wiggly infant. Placing the tube took two of us and was a horrible and tension filled ordeal; the tube had to be taped to her face, which resulted in raw, broken skin; she would pull the tube out (accidentally or purposefully), which meant starting all over again and created huge issues when there was no one there to help me; she eventually started gagging up the tube, so that even after it was placed correctly, she would essentially cough it up so it was going in her nose, but coming out her mouth - not good. So, we decided to have the surgery for g-tube placement and decided to use a low-profile, Mic-Key gastronomy tube from Kimberly Clark. Here’s a link for a video that shows how the button sits so close to the skin that you can barely see it under clothes, and how it works.

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Psychmamma is the contributing editor for Special Medical Needs. She writes at Psychmamma where she covers life with Jenna, her "spunky little two year-old who was born with a triple intestinal atresia." Her blog is also the home of Special Needs Sundays.

A Day in the Life

I've been wanting to do a day in the life of Caleigh for some time now. I finally got inspiration from Ellie's parents when they blogged about Feeding Gut Girl.

Back when Caleigh was getting over 24 doses of medicines a day I didn't even have time to think about journaling our day. We barely made it day by day and just keeping Caleigh's schedule back then was good enough. Now that things are going so well and have calmed down a bit I have time to breathe and think about what we really do on a daily basis.

It all starts at 6:30 or 7:00am, Caleigh wakes up. We get up, turn off the Apnea Monitor, change her diaper (that inevitably leaked everywhere), proceed to change all the bed sheets and strip her down to her new fresh diaper. We give Caleigh's seizure med, Keppra, & Ursodiol, liver med, through her g-button about 7:30.

Caleigh plays on the floor while we work on waking up, coffee or green tea is a must at this point.

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Caleigh's Corner is a guest blogger for Bridges.

Breastfeeding and Feeding Pumps

Before Jenna was even born, I knew that I wanted to breastfeed. I won’t go into all my reasons here - that’s another post all together - but when we learned about the extent of all of her intestinal issues and her problems with feeding, I immediately assumed that my hopes for breastfeeding were dashed. I’m so thankful I asked and that we had fantastic doctors and nurses who were encouraging and accommodating. I learned that I could express (i.e., pump) breast milk that would be used through her feeding pump so that she could still get all the nutritional advantages I wanted to offer her through breastfeeding even though she wouldn’t get it directly from me. I began pumping immediately so that she could get the benefits of colostrum, and it wasn’t long before my milk production was far exceeding her rate of feeding. I carefully labeled and froze everything I expressed, and the nursing staff worked with me to use the “older” milk first, so that nothing was being wasted.

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Psychmamma is the contributing editor for Special Medical Needs. She writes at Psychmamma where she covers life with Jenna, her "spunky little two year-old who was born with a triple intestinal atresia." Her blog is also the home of Special Needs Sundays.

A Word From Dad

Hello, and thank you for reading on Hope's journey. I just wanted to add some of my thoughts. Hope's journey with short gut is unique, because we chose to forego extraordinary medical intervention. The hardest decisions that we as parents will ever be asked to make, are those that affect the lives of our children. We would like other parents to know that it is okay not to do everything that the doctors suggest. Facing the prospect of losing a child was the most difficult and trying time in our lives.

The consensus of the Doctors was that without medical intervention Hope would live two to three weeks at the most, that she would never gain weight, and she would die of malnutrition. Knowing this we decided to trust God, and brought Hope home under Hospice care. We prayed, not knowing if our prayers would be answered, but having faith that they would.

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Hope's Journey is a guest blogger for Bridges.

How Do I Explain?

How can I explain what my life is like to people who don’t have a child with special medical needs? Is there any way they can even understand? I usually don’t even like trying to explain it, because it seems so daunting and I don’t want to be misunderstood as whining or complaining. I explained before that I really don’t feel like I deserve more kudos because I have a special needs child. If you ask me how I do it, I’ll tell you, “The same way that other parents do - one moment at a time.” And I have lots of support and love. I’m really not complaining. However, there ARE many things about my life and the lives of other parents like me that you might not realize or understand.

For some reason, today I feel the need to give it a try. Maybe because I’m hoping that others will understand, at least a little bit, and that maybe a little bit is better than none. Maybe because I have a friend who lost her special needs baby this week after only eight months of life, and my heart is hurting so much for her because I DO understand (at least a little bit) what life was like for her. And how much her heart is hurting right now. Maybe I’m seeking a small measure of validation. Not for myself so much, but for my friend and the many others like her who are dealing with issues incredibly more serious than we are. For whatever the reasons, here’s my stab at a describing some things from the life of parents of children with special medical needs that you might not realize or have given much thought to before. (Because I’m a list sort of person, I’m putting it in list format, and, by “we,” I mean parents of kids with special medical needs in general, and our family more specifically).

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Psychmamma is the contributing editor for Special Medical Needs. She writes at Psychmamma where she covers life with Jenna, her "spunky little two year-old who was born with a triple intestinal atresia." Her blog is also the home of Special Needs Sundays.

Network Spinal Care

Let me just tell you that laughter is definitely the best medicine!

Eric, Caleigh and I went to a Network Spinal Care doctor the other day. Our Feldenkrais practitioner suggested we try another therapy to compliment hers. She suggested Homeopathy, BodyTalk or Network Care. Her thought is that our bodies are holding in all the stress of the past year and a half. If we don't get rid of the stress then it will be difficult for Caleigh to move forward past her pain and trauma. Any tension that Eric and I are holding in will be transferred to Caleigh and she feels that from us. I'm stressed, I know, so it made some sense to me and anything that is relaxing at this point is worth a try. After reading about all of them we decided to give Network Care a try. It is done by Chiropractors and seemed to be the most 'medical' of them all. Here's a brief summary.....gentle touches along the spine that help release the tension. It uses your bodies own energy to heal itself. You can look at the associations website, but let me tell you, it can't explain what happens and what you see.

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Caleigh's Corner is a guest blogger on Bridges.

How Do You Do It?

I frequently get comments from other mom’s asking me, “How do you do it?” referring to taking care of Jenna’s “special needs.” (She has a MIC-KEY gastrostomy “button” that we attach a feeding tube and pump to several times a day. This is currently the only way she “eats.” The picture above is her wearing her feeding pump in a backpack with a tube feeding her.) I’m always a little bit taken by surprise by the question. I guess my answer is, “The same way every mom does it.” Just like I rarely think of Jenna as “different” or “special needs,” I rarely think of myself as different from other moms. Oh sure, I have those moments of feeling sorry for myself or feeling sorry for Jenna. I wouldn’t be honest if I didn’t ‘fess up to that. BUT, those moments are few and far between and I try to chase them away as soon as they come. The fact is that, just like most moms out there, I take one moment at a time. That’s right. THAT’S the secret!

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Psychmamma is the contributing editor for Special Medical Needs. She writes at Psychmamma where she covers life with Jenna, her "spunky little two year-old who was born with a triple intestinal atresia." Her blog is also the home of Special Needs Sundays.

Psychmamma's Story

Psychmamma is the contributing editor for Special Medical Needs. She writes at Psychmamma where she covers life with Jenna, her "spunky little two year-old who was born with a triple intestinal atresia." Her blog is also the home of Special Needs Sunday.

I’m a midwestern, SAHM of a spunky two-year-old named Jenna. My blog (and pen) name comes from my background and training. We didn’t think I could have children because I have severe endometriosis, and we had happily settled into the idea of being childless. (Ha!) I was in grad school on my way to a Ph.D. in Clinical Psychology, specializing in children, when our pregnancy surprise happened. I had completed all my classwork and requirements, and was ABD (all but dissertation) and a 1-year internship away from the goal. When problems developed with the pregnancy leading to 3 months of bed-rest, I took a leave of absence from the program, intending to return after Jenna was born. When we learned the extent of her problems and the care she would require, I completely withdrew from the program to stay at home with her. It’s a decision I have never regretted.

Jenna was born with birth defect called a triple intestinal atresia, which, in plain English, means her small intestine wasn’t formed correctly and wasn’t fully connected. She had surgery when she was only two days old and ended up with only about half the normal length of small intestine. She spent three months in the NICU and developed chronic lung problems somewhere along the way. She has done phenomenally well and is a typically developing two-year-old in every area except for eating/weight gain and being more susceptible to serious respiratory problems. She has a g-tube that we feed her through, although she can eat by mouth if she’s in the mood or hungry enough. Currently, she'll only eat popcorn and homemade fruit smoothies.

So, I have a Master’s Degree in Clinical Psychology and I “practice” every day with my own wonderful daughter. I can honestly say that parenting is the hardest job I have EVER done. It’s also the most joyous and rewarding one, and I wouldn’t trade it for the world. I love to read, coffee and chocolate are two of my favorite things, I'm not a morning person, and I'm afraid of chickens. If that's not enough information for you, check out 101 more things about me here.

I write to connect with other stay-at-home moms and to have a journal of my own experiences. Plus, writing is like free therapy, and you can't beat that. I have a weekly post on Sunday that addresses some of the issues we’ve gone through and things we've learned from Jenna's special needs. Hopefully, the information and experiences I share will help to make someone else’s journey a little bit easier.