Wednesday, March 7, 2018

Why we chose to transition our special needs child to a medical daycare, and how it affects our entire family

Special needs parents become accustomed to being their child’s primary caregiver. After all, no one knows them better than us. We are the ones who have been there for them every strep of the way. Every doctor’s appointment and new diagnosis, every hospital stay and medical procedure, every illness nurturing them back to health, every late night meltdown and every miraculous moment they overcame an obstacle put in their way. 

As our children get older and become ready for their next transitional step, whether it be starting preschool, mainstream school or attending a medical daycare facility, it never gets any easier as a parent to give up more of our caregiving role and put our children in the hands of someone else. However, this is a necessary step and important for the development of the child and the relationship they have with their parents and the outside world. 

Last week marked the start of a new chapter for our almost six-year-old daughter, Alyssa, and our entire family. Alyssa will now be attending a daycare facility for medically fragile children called PediaTrust in Columbus, MS. She gets picked up from school and transported to the center, where she spends the remainder of the afternoon until they bring her home. At the center she receives therapy, works with a special education teacher during a designated time, participates in group activities such as arts and crafts, story time and music therapy. She also gets one tube feeding during lunch time while she is there. 

Thursday, January 11, 2018

How to plan for your child's surgery in 5 easy steps

Hospital stays, no matter the length of time, can be unpleasant and nerve racking. You are already having to deal with stress and worry surrounding your child’s surgical procedure, so the last thing you want to be worried about is something you forgot to pack or plan for. Being prepared will help ease your mind and make your stay a little bit easier. 

In this post I will break down the 5 easy steps you can take when planning for your child’s next surgical procedure. These steps apply to both outpatient and inpatient procedures.  

Sunday, January 7, 2018

How to survive flu season with a medically fragile child

Unfortunately, the best way to survive flu season while having a medically fragile child is to avoid as many situations as possible that put your child at risk of catching an illness. 

Sometimes that requires having to miss certain family events, birthday parties, holiday events, even school and therapy. 

For medically fragile children, exposure to people in a household that have had the flu can be serious to their health. So, it’s extra important to be aware of the people you put your child around when they are medically fragile. 

Yes, it’s hard when any child gets sick, but when children that are medically fragile get sick, it is taken to a whole other level. Unless you have experienced and witnessed your child in such a fragile state, you couldn’t even comprehend. 

I’ve seen my daughter go through way too much already, that if I can do something as simple as keeping her from a person that I know has the flu or a stomach virus or a cold, then I’m going to do that. 

I’ve seen Alyssa go through weeks of being ill and not being able to get out of bed, not being able to keep down her food, not being able to lift her head even on days, because she is so weak and fragile. 

When you’ve seen your child go through something like that it changes you. It makes you want to do even more to protect them. And if that means we have to miss a birthday party or family event, then that’s what we’re going to do. 

What defines a medically fragile child?

Medically fragile children are children that have feeding tubes, tracheotomy devices, need heart monitoring, oxygen, or IV medication administered. It is any child that has extensive medical needs beyond your average care for other special needs children. 

Alyssa is considered medically fragile because of her feeding tube. It is her sole source of nutrition, and because if that her needs can be extra challenging, especially during flu season. 

When Alyssa gets sick it affects her in ways that are so different than the average person when they get a cold or flu, or even a stomach virus. 

She becomes very weak and lethargic. She’s unable to keep down her feedings. She constantly throws up. 

Alyssa is five and a half years old and only weighs between 31 to 32 pounds. When she gets sick and she’s unable to keep down he feedings, she can easily lose a pound d or more during the week span that she is sick. 

She can get dehydrated very easily, and if it wasn’t for her feeding tube, there would be many times that we have had to hospitalize her based off of a simple cold. 

We’ve been fortunate this flu season to not contract the flu in our household, but Alyssa has had her share of illnesses over this season. 

Being sick is no fun!

Friday, January 5, 2018

Navigating the world of a non-verbal child

Having a child that is non-verbal presents many challenges, and no length of time ever makes the lack of speech any easier. 

There are many days I wish my daughter could simply tell me what’s wrong and when she's hurting. I wish I knew how to fix whatever is bothering her at the time. I can see the frustration she goes through, and it breaks my heart. 

We are fortunate that she can say a few words (mama, buba, dada). When she gets really upset and whinny is when I hear mama the most. She will start calling for me, and I just get as close as I can to her and do what I can to comfort her, without even knowing exactly what is wrong. 

She has been getting so frustrated lately that when she cries she starts to gag herself. She will do this for long periods of time, while we are doing everything we can to try and figure out how to calm her down. 

For the most part, I think her crying outbursts are her way of telling us she doesn’t want to do whatever it is she is doing at the time. For instance, the other night when she about to be hooked up to her feeding pump to eat, she started crying uncontrollably. I took this as an indication she didn’t want to eat at that time. 

Instead of having her sit there and cry, I took her out of her high chair and started playing with her. I got her happy and distracted, and gave her time to calm down. An hour or so later I started her feeding, and she did fine. 

Alyssa is just like any other five-year-old child. They all have times when they get tired, cranky, sad, mad or angry. Alyssa has all of those same emotions, but deals with them in a more internalized way. As she gets older I am seeing more of the frustration coming through with her not being able to verbalize her wants and needs. 

Alyssa uses an AAC device (Augmentative/Alternative Communication) at school, therapy and home. It looks similar to an iPad, but way heavier and bulkier. Her teachers can program every aspect of the device, including the words and the background. Over time, Alyssa has made great advancements with the use of her device. She continues to impress her teachers and therapists. 

The AAC device is great for communicating with Alyssa during certain activities, but it is limited to being able to express very basic commands. It is my hope that in time she will learn to use it more effectively, but our current delimma still stands, even with the use of the device. 

Having breakthrough moments when I feel that Alyssa and I can connect and communicate, whether through words or not, is the most exiting moments I have as a special needs mom. I’m still learning how to navigate her world. It is an intricate and exciting world that we are all so happy to be apart of.  

Mommy and Alyssa

Monday, January 1, 2018

Hello World!

Today is the first day of the new year, and with that comes new beginnings and endless possibilities. For me, that means dedicating this year to my personal growth and opportunities that allow me to pursue my dreams. One of those dreams being the creation of this blog. 

For as long as I can remember I have always wanted to be a writer. As a child, I spent my free time writing stories and illustrating them, while dreaming of one day becoming an author. My most treasured possession as a child was my typewriter.

In elementary school, I started a newsletter, and began writing the first of many short stories. In high school, I started the school's first newspaper. I had drive and ambition at such a young age that I was able to carry over into my adulthood. I turned my interests into opportunities to continue living my dreams.