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Date: 4/11/2017 9:55 PM EDT

Featured on the by Shelley Colquitt, mother of two daughters, one who spent time in the NICU as a result of a rare disease.

I was excited and scared when we finally got to bring our youngest daughter, Mighty Z, home from the hospital. It had been six long months since she had been born with Congenital Central Hypoventilation Syndrome (CCHS), and during that time she had been trached and vented. Before the hospital would allow us to bring Mighty Z home, they prepared us to care for her and taught us how to troubleshoot problems that might arise. Her doctors and nurses made sure we understood how important it was to keep Mighty Z, a baby who had been intubated and was still trached and vented, away from every contagious “bug” that tried to bite her. RSV, the flu or even the common cold, could result in not just sickness for Mighty Z, but in her death.

Photo credit: Colquitt Family

Handwashing Is No Joke

As Mighty Z’s primary caretaker, it was up to me to keep her safe in a sneezing, coughing, runny-nose world, and I took that responsibility seriously. After her long-awaited homecoming, everyone who graced my threshold was interrogated as to whether they had a fever, a cough, the sniffles or anything else that might land Mighty Z back in the pediatric intensive care unit (PICU) before being allowed inside our home. Those who gained entry to the foyer were requested (instructed!) to remove their shoes and sanitize their hands before they could go any deeper into the house. Despite my precautions, I knew it was impossible to keep all contagious illnesses away from Mighty Z, and I lived in fear of one illness in particular, RSV.

Educate Yourself About RSV

Though RSV infection can occur in people of all ages, preemies, infants and very young children are particularly susceptible. Older children who are infected with RSV usually have only mild, cold-like symptoms such as a cough, stuffy nose or low-grade fever, while infants under age one are more likely to experience more severe symptoms that result in trouble breathing. A child who has been trached and vented, or even intubated for even as little as one day, has scar tissue from those procedures in the lungs. That scar tissue makes such children especially susceptible to having an ordinary childhood illness become something substantially more catastrophic than it might otherwise.

Outbreaks of RSV begin most often in the fall and run into the spring. The virus is spread through tiny droplets that go into the air when an infected person blows their nose, coughs or sneezes. In general, RSV symptoms usually appear 4 – 6 days after coming in contact with the virus.

Symptoms include:

Bluish skin color due to a lack of oxygen (cyanosis);
Breathing difficulty or labored breathing;
Croupy cough (often described as a “seal bark” cough);
Nasal Flaring;
Rapid breathing (tachypnea);
Shortness of breath;
Stuffy nose; and,
Antibody Shots Buy Time

Even healthy, full-term babies and toddlers can wind up with a breathing tube and on a respirator due to RSV, and her doctors knew what it could do to a child like Mighty Z, who had scar tissue in her lungs as a result of the respiratory treatments necessary to care for her rare disease.

In order to help keep Mighty Z RSV-free, her doctors prescribed monthly Palivizumab (Synagis®) shots for her between the ages of 6-months and 24-months, after which point her doctors felt she would be “out of the woods” and better able to fight infection. Synagis®, a man-made antibody to RSV, is costly both to obtain and to administer, as it is typically given in the Synagis® clinic at a pulmonologist’s office. In my experience, it costs approximately $1,500 per dose now compared with about $3,000 per dose 10 years ago. Because of the cost, our insurance didn’t want to pay for Mighty Z to get monthly Synagis® vaccinations, and it was only after much arguing that I persuaded our insurance company to pay for the cost of the antibody itself. There was a catch, though, as their agreement to pay for the antibody cost was conditional upon my agreement to administer the vaccinations to Mighty Z myself, instead of taking her into the pulmonologist’s office every month to get shots.

After we negotiated our agreement, once a month our insurance company sent a syringe and two vials to our door. One of the vials contained powdered Synagis®, and the other contained sterile water. I mixed the powdered Synagis® antibody with the sterile water to reconstitute the shot, drew it up with the syringe, and then gave the shot to Mighty Z once a month.

Although giving Mighty Z her monthly Synagis® shot was almost unbearable (giving your own child a shot is even worse than watching someone else do it), I did it anyway. Even though Mighty Z and I both hated the shots, I knew she needed them.

RSV is Serious Business for Respiratory-Compromised Children

Photo credit: Colquitt Family

When Mighty Z turned two, I was over the moon! Not only had Mighty Z doubled the one-year life expectancy her doctors had foretold when she was initially diagnosed with CCHS (Yippee!!), but also I would no longer have to give her Synagis® shots (Yay!). Unfortunately, my elation about no longer having to give Mighty Z monthly shots was short-lived, as she became infected with RSV after only a month without shots. Though she had to spend the next two months in the PICU fighting for her life, Mighty Z won her battle. Looking back now, I believe that Mighty Z survived RSV infection at age two because of the precautions undertaken to keep her RSV-free until she was old enough and strong enough to win the fight.

If your child has ever been either intubated or trached and vented for any amount of time, tell your guests with sniffles that you’ll see them later. Require those that make the cut to take off their shoes and wash their hands, and put on your chemist and nurse hats to administer RSV shots if prescribed by your doctor and that’s what it takes to get the cost covered. In short, if your baby has ever been considered medically fragile, sometimes you’ll have to do whatever it takes to increase your child’s chance of beating the bugs.

MedImmune – RSV Protection – This website, which is sponsored by the maker of Synagis®, provides information about RSV including who is at risk, how to prevent the virus, and when RSV season occurs.

Shelley Colquitt is the mommy of two beautiful girls, Lauren and Zoe. Her youngest daughter was born at 40 weeks. As they celebrated the success of the labor and delivery, her baby stopped breathing. Later she was diagnosed as having a rare disease that only at the time (11 years ago) 163 babies in the world had. Shelley had to learn to take care of her baby, who had a trach and was on life support machines 24 hours a day. Not only is Shelley busy with her two girls and works very hard to keep her youngest chronic medically-complex child healthy, she also volunteers at a shelter for abused/neglected children and as a teacher’s aid for globally delayed children. Follow her journey at her blog: Confessions of a Sleep Deprived Momma.

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Date: 4/11/2017 9:38 PM EDT

From the blog page "Lindy's Lemonade":

A few months ago. I was going through some papers while two of my children were sitting in the living room with me. (It was time to get rid of…oops did I say that out loud?…It was time to give all the art work, school papers and whatnot’s that I had saved over the years to each of my children. You get to do that when your children move out.) I came upon some letters I wrote years ago when I was advocating for my oldest daughter to be allowed into the regular school system while we were living in Bermuda. I read them and chuckled and then read them out loud. I think it was my son who said, “Geeze Mom you were hard-core back then.” Hard-core, me? Na, I just never took no for an answer.

Seriously though I never really realized or thought of myself this way before. But maybe one has to be hard-core when one is advocating for someone who doesn’t have a voice. I knew that the best environment for my daughter was one that would give her the most opportunity to learn in and for us that was in the regular classroom setting. It was here, in the typical classroom environment that she learned how to deal with the realities of life. She was not sheltered or put in a bubble where things were made easier for her. I wanted her to learn how to make friends, how to deal with enemies and how to be appropriate and of course inappropriate like all the rest of the kids learn when they are going to school. This right of passage that should be available to all children was denied to my daughter because she was born with an extra chromosome.

My journey into the role of advocate began right at the birth of my daughter. I was thrust into the world of needing to lend a voice to her from the get go. I learned on the run and made many U turns along the way but in the end I felt that her “voice” was being heard. Our journey while living in Bermuda was not the first experience that we had in trying to get others to see the value of our daughter being placed in the regular classroom setting. As I said, right at her birth, when she was just a few months old I lent my voice along with many other parent’s voices who were advocating for laws to be changed so that ALL children had the same rights and privileges to attend school and receive the same educational experiences. Those laws were changed and when it was time for my daughter to attend school she did have the legal right to attend school just like all the rest of the children….however the interpretation of this law was subjective and interpreted to suit the needs of particular schools and school boards. When I began to push back and try to use this new law as a precedent to get my daughter in school the words “lack of funds” would come out as an excuse about why my daughter was not allowed to be placed in the classroom where her peers were being placed. This term became to be a very dirty phrase for me and one that would instantly get my blood to boil. Let’s just say that I became pretty efficient at letter writing and having meetings.

We ended up leaving Bermuda because we received a letter from the then Minister of Education stating that he had the right to place Christie in one of their Special Schools. Remember this was a few years ago and policies may have changed in Bermuda since then. While living there I met many people who had the same point of view as I did and I lent my voice to theirs to try to get policies changed but we as a family didn’t have the time to wait for this change to happen. For us, placing our daughter in a school that was not a regular school was not an option so we packed up and moved back home where I began the fight for her to be able to attend her local school. We moved back home, where there was a law in place….I just didn’t know that I still had a fight a head of me.

The path of choosing to advocate for someone is not an easy one to maneuver. In fact at times it can be down right difficult, frustrating and in some cases the path becomes so obscured you don’t know where to place your next step. During this journey I came across many people who were ignorant and narrow-minded. People who were more interested in hearing themselves talk than helping, people who were more interested in the power of the position they held instead of using that power to help. However, I also came across many more people who were willing to change, who were willing to learn, who were willing to try something new, and who were willing to take risks. I met wonderful supportive people and made many friends along this journey that outweighed those “other” sorts.

Would I choose this path if I could have a do over? I’ve asked myself this question a few times especially lately now that my daughter is grown and living away from home. Would I do it all again. Yes I would. She is who she is today because of the experiences she has had, the negative and the positive. Like all people the experiences we face shape and mold us into the adults that we become. It’s just when some of those experiences are negative that we have a choice to make…are we going to learn from those experiences and move on or are we going to allow the negative aspects of those experiences to change us into less than what we are able to be? I have to say that one of the beautiful qualities that my daughter has taught me is that one has to move on from the negative, forgive and continue to love no matter how much an experience has hurt. I wish that I could bottle up Christie’s hugs so that the World could feel how much each and every one of us is loved.

…lend your voice…


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Date: 4/11/2017 6:03 PM EDT

We are sharing this helpful article from the My Child blog on, originally published Feb 14, 2017.

Raising children can be a full-time job. Many parents appear to have it all together, other’s not so much. Habits can create a better routine for behavior which leads to a better grip on the life you and your child lead. Do you have positive and helpful habits when it comes to being a parent of a child with special needs? We give some ideas for helpful habits that will make parenting and helping your child much easier.

Maintain Support Systems

Parenting can be hard at some points and you shouldn’t have to face it alone. Maintaining a support system that you can turn to will make you feel less alone on your journey. A support group can provide you with resources to help you and lend a listening ear. A support group of parents who are on your same journey may give you ideas to tackle a problem differently. These support groups can be found in a Facebook community or found offline. A parent should have a support system not only found in a support group but also with friends and family.  Do you maintain friendships? Keeping close friendships can help with your health and overall happiness. Friendships are there to support you, share special moments with and can help you vent when times are hard.  They provide a life outside of the home and can create better connections in your everyday life. We are all busy so you may go periods of not meeting up with your support system. Keep connections alive by taking time to stay connected with a quick phone call, email or text. If you are always the first one to reach out, do not let that stop you.

Do Your Own Homework

Become an expert when it comes to your child’s special needs. Conduct your own research often when it comes to the latest developments and findings. Not only by reading the latest articles online about programs and therapies but by being an investigator in their daily life as well. Keeping tabs on what is happening in your child’s life leads to a better understanding in what you and others can do to help improve it. It can create better discussions on what can be done for your child in school, the local community and to their health. Decrease gaps in parent-teacher relationships by meeting more often with your child’s educational team to have greater knowledge about what your child is learning, areas they need to further develop in and to aid in building stronger ties with your child’s daily environment.

Take Time Out

Everyone needs a break from time to time. Make sure you are taking time out for yourself to recharge. Carve a spot out each week for you to do something you enjoy. Are you keeping up with your self-care physically and emotionally? Being a parent can sometimes mean putting your child’s needs before yours. However, you can not be your best when you are running on empty. Physical self-care includes getting enough sleep, eating healthy and receiving regular medical care. You may have a lot of doctor appointments for your child but that doesn’t mean that you should be neglecting your own health. When your health suffers or you become sick, the ability to take care of your child will suffer as well. Emotional self-care includes working on relationships, saying no to extra responsibilities, spending time with individuals, enjoying a hobby and giving yourself quiet time.

Create A Safe Environment

Creating a loving and supportive environment will positively impact your children forever. Do you encourage your child or praise them? This will help them develop a healthy and positive attitude and self-image. Gossip about your child so they can overhear. No not the bad gossip, let your child overhear you the next time you tell a grandparent on how well they did with their latest school assignment. When your child talks to you do you listen and provide helpful feedback? Children need to feel safe when confiding in you. So they will feel it is okay to come to you when something is really troubling them. Be sure to take their feelings into consideration when providing feedback. Give them a safe environment free from negative criticism and they will feel more comfortable in opening up to you when things go wrong or a challenge arises. The way you speak to your children provides them with an example on how to treat others and how to treat themselves. Show your children that you care for them even when you disagree with their behavior.

Becoming a parent can change you drastically. Your life and your habits focuses in on a singular purpose, your child. It creates a tighter bond that you ever thought possible. Life with a child can be meaningful, fun and chaotic. However, you should never get too busy to take time out to care for yourself or carve out a spot from your day to make them feel important. Creating helpful habits can improve the bond with your child, a better understanding of their education and a healthier lifestyle for yourself.

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