Casey was born in 2006. If she had been born even a year or two sooner, chances are she would not have survived her birth. If it had been 3-5 years sooner, chances are I would not have survived either. Medicine is constantly advancing. This has put us in an interesting position. We often refer to Casey as a pioneer. Medicine had advanced enough to save her life at the event of her birth trauma, but the rest of the medical world was not quite ready for her.

Early on doctors told us to prepare for the worst, no way could she survive the night (then the week, month, year, etc). After a while her doctors realized that they really don’t know what to expect from Casey. She is the first child they have seen like her so there is no medical textbook to guide them along her expectations. We are writing the book as we go.

Some of her symptoms are things the doctors are able to treat and/or predict, but her overall progression is a total mystery. Often they will try to treat something that they have seen in other patients and Casey will react completely opposite of what they expect. Other times, her symptoms leave the entire room of medical professionals scratching their heads with no idea what to tell us.

As a parent, you want answers. Early on we were set on “fixing” everything. It was really hard to initially accept that we could not fix her. Then to accept that the doctors were learning about Casey right along side of us. Yes, we have a diagnosis, but it really doesn’t mean much. Her primary diagnosis is so vague- HIE (Hypoxic Ischemic Encephalopathy). Some kids with HIE are very mildly impaired, some are more severe and then there is Casey.

The first few times that we took Casey to a doctor and heard “I have never seen this before” or “Hmm, that’s not what I would expect” or the many varieties of that same sentiment, we were frustrated. If the doctor couldn’t tell us what was going on, then where did that leave us? We hear this very often now. I think all of her care team (we are up to 16 doctors now) have said it at one point or another.

We saw something start to happen in these appointments. Yes, the doctors were not able to give us the answers, but they did not leave it at that. Casey’s doctors all started working together, and with us, to try to put the puzzle that is Casey together. They all readily use a new medical term now too, CASEYISM. A Caseyism is a medical term describing a symptom that cannot be explained, predicted, nor treated, and does not pose an immediate threat to the patient. It is our goal to get this officially added to the medical dictionary one day.

Just because we don’t have the answers does not mean we are being left out in the cold. We have an amazing care team that really all want the best for Casey. If you find that your child is also a pioneer, or that doctors just don’t have the answers you are looking for, don’t give up hope. Build a team that will work together. Our team may not be able to come up with the answers, but they will do everything in their power to help us keep Casey healthy, home, comfortable and happy. We have decided that having the best quality of life possible for her is way more important than labels and answers.

I remember it like it was yesterday. I had all of the traffic lights on the back roads timed perfectly. I knew exactly how long I had at each red light to jump over the console, suction Casey, and get back behind the wheel before it turned green. I knew all the places I could pull over if I needed more than a few seconds at a red light. I would sleep for 30-60 minutes here and there waking up for medications, suctioning, diapers, to add food to her continuous feeds, etc.

We had a nurse that would come by to watch Casey for 3-4 hours once or twice a month. We would go on a date and try to spend time as a “normal” couple. Other than these few hours a month we focused on keeping Casey alive. Our health, our sanity, our relationship all took a back seat.

We moved from California to Texas around the time Casey turned 2. Casey has a lot of doctor appointments and I was not able to take back roads or pull over anymore. All transports for Casey from that point on required 2 people- 1 to maintain her airway while the other drove. We HAD to get help; we had to get nursing.

Having a nurse come into your home is not natural. You feel like a failure as parent for not caring for your child on your own. There is a weird phase of defining your roles. Are you the boss, are you the assistant, are you a partner, are you a host? What if I don’t like the nurse? What if they don’t like me? Most importantly, what if they cannot provide the care that my child needs? And there is someone in your house, the privacy hurdle is hard to get over.

Initially we had a nurse that came 1 day a week for 12 hours. She was also new to home health, so we figured it out together. I showed her exactly how I cared for Casey and she did her best to do things exactly as I showed her. She loved Casey and we immediately felt like we were on the same team.

After a few shifts she was able to handle Casey’s needs. On her days we would plan all of Casey’s appointments. Some days I was able to get some sleep. I would run my errands. I even found time to go to lunch with friends and take a break.

Our nurse had to cut her hours back from 12 to 8 after a few months. I was so reluctant to start nursing, but now the thought of losing some of these precious hours was devastating. I decided that instead of losing 4 hours, I would go to 3 days- 8 hours each and find an additional nurse. Of course we had to jump through hoops to get insurance to cover the additional hours, but we managed to get it done.

When we look for new nurses we have learned that they are not all as fantastic as our first one. We go through 3-12 before finding a good fit. Early on I would try to make it work. I would train and retrain and do everything I could before calling the agency to switch them out. Now I have learned to trust my instincts. If they are a good fit I can usually tell right away. The bad fits are not necessarily bad nurses; they just are not the right nurse for us. It’s very important to feel comfortable and trust your nurse. If you feel like you have to babysit the nurse the entire time, it’s not the right nurse. We are clear about what we expect, and we let our nurses know how much we appreciate them.

It was a real struggle to start nursing. Over the years we have added many shifts and have gone through some amazing and some scary nurses. I still wish I had not waited so long. Those first 2 years did not have to be as hard as they were. I also know that having help does not make me any less of a mom. It does take a village, in our case, a very large village.

This article was originally created for and published by Pediatric Home Service

Buying gifts for kids with complex needs can be tricky. Hopefully these tips can help you find the perfect gift for the special little ones in your life.

1. An easy go-to gift that people love to get are Gift Baskets for Women. They are cute, soft and cuddly and you can pick one up just about anywhere. After a kid turns 3-4 (or even earlier) they end up with quite a collection of stuffed animals. For complex kids that are hard to shop for- this is what EVERYONE gives them. Unless the family has said they want or need more stuffed animals, they probably already have more than they know what to do with.
2. Clothes are tricky! For some kids they need access to certain parts of the body (feeding tubes, central lines, catheters, etc). A little girl with a feeding tube may not be able to wear dresses since there is no where to run the line for example. My daughter has skin issues and cannot lay on seems, zippers, buttons, bows, etc without it causing break down and sometimes even open wounds. For our family and friends we make sure everyone knows not only our daughter’s size, but that any clothes for her have to basically be something she could sleep in all day comfortably. If you want to get clothes for a child with special needs, ask the family ahead of time if there is anything you should avoid or look for.
3. Some toys are very loud or bright. For a lot of kids, over stimulation can lead to full on sensory melt downs. Some toys, like this fort building kit, require a lot of coordination to play with as well. If the child you are buying for has limited motion, they may not be able to play with the really cool racetrack you found, they may be better off with something like an ooze tube that they can watch and have someone flip for them from time to time. Or maybe they like light up toys, but have a seizure disorder. You may need to be sure the toy is not a strobe light that could trigger a seizure. If you are not sure, I would suggest asking the family or staying away from toys in general.
4. Activities are fun gift ideas. It may be passes to an activity location (like a park or bounce house) or it may be an activity for the child to do at home (puzzles, crafts, etc). Obviously you would not want to get a pass to a bounce house for a child with limited mobility that is in a wheelchair, but there are a few other things to consider with a pass to an activity. Some kids may physically be able to get around, but they may have compromised immune systems and the family may avoid crowded places (at least during cold and flu season). Or, maybe the child has a sensory disorder and going into a hyper stimulated environment may not be something the child would enjoy. For these kids, if you want to get an activity related gift, you may be best sticking with activities that can be done at home. My daughter has very limited mobility and can not do the activities on her own, but she like to make the color choices, placement, and pick out details on crafts and then we are her hands for her.
5. Movies and music are often great choices for kids. Some movies have great colors that are ideal for children with CVI. Some movies and music can really help to get the kids motivated to communicate and move as well (in what ever ways they are able). It’s kind of like a way to sneak in some therapy. I would just make sure you either include gift receipts with these, or ask ahead. Many families will have a lot of movies already.
6. Books are my FAVORITE go-to gift idea. They are much easier to store than countless stuffed animals, and they are great for kids of all ages and abilities. If the child cannot read themselves, it’s a great bonding gift for the parent to read to the child. Lots of books have fantastic art work that is wonderful for kids with CVI as well. I would suggest asking the family if the child is able to read, and if so, what level. Or try to find books with characters or items the child is interested in. My daughter can not get enough elephant books- fact or fiction.
7. Sometimes I really try to find gifts that kids WANT, but getting a kid something the need is not a bad thing. With complex kids, there is almost always something they need. It maybe things like blankets, drool cloths, travel bags, bottles, therapy aides (like chewy sticks or bolsters). There is nothing wrong with asking the parents what a child may need.
8. If none of these suggestions help, you could always go with a charitable gift. Make a donation to a local child’s charity that helps children like the one you are shopping for. Or maybe the family is saving up for a special brick, star, etc in the child’s honor at one of their favorite places. If that is the case, you could contribute toward something like that.

Regardless which gift you chose, as long as it comes from your heart I’m sure the child in your life will love it. Happy Holidays!