Dancing Through Life: Life Modified

This post was written by Michael at the end of June:

Having a child is life changing no matter if your child is heathy or medically dependent. I think for most parents having a medically dependent child is "sad, stressful, and so tough to keep it all going", but, in all honesty, it really isn't as bad as most think.

While celebrating Emma's 2nd birthday in June, I was talking to some of our NICU nurse friends about how things are going on their end. They told me about how many parents and families currently in the NICU could benefit from the things I've made for Emma. Seeing that you can live life "normally" with a medically dependent child. I thought about it and decided I'd write a post about just that.

The NICU is scary for any family. Not knowing if or when your child will graduate from the NICU, dealing with the stress of "hospital living", and just wanting the roller coaster you're on to finally end. I am here to tell you that getting out of the NICU will be one of the best days of your life. I've been told by many friends that most families feel that even when they get home that things will never be the same. That having a child who is medically dependent is the end of anything fun in their lives. Sure they are happy their child is living, but the thought of being stuck at home 24/7 is a saddening feeling. I can say with full confidence that anyone with a medically dependent child CAN live the lives they want to and go to the places they want; it may just take some creative ways of doing just that.

In Emma's case she really isn't too bad on the medical complexity. She has a trach, ventilator, oxygen tank, G-Tube, feeding pump, suction machine, pulse ox machine, and a medical supply bag that goes everywhere we do. Now, for most people with healthy children, this is a very daunting task of getting all of this equipment in the car, stroller, or whatever else you may be using. But it really isn't as bad as it sounds. I know for us, learning all the stuff we would have at home was overwhelming at first and trying to remember it all was tough. But both Rachel and I were dedicated to giving Emma the best life we could so we did our homework and made sure we knew these items inside and out. I can't tell you how many times I heard the phrase, "they also make a medical device for (fill in the blank - stroller, walker, high chair, etc)." I didn't like hearing that because I didn't want bulky, very expensive and barbaric looking equipment for our daughter. One of those items was a stroller they recommended that was ventilator compatible. Well, for one, we had already bought a really nice stroller before she was born and before we knew about the medical complexities that were about to be upon us. But two, I wanted to be as normal as "normal" could look with a medically complex child. I didn't want my child being pushed around in a stroller that was clearly a medical chair. Nothing wrong with those who need one, but personally, we liked the stroller we had already had. So for me it was, How do I incorporate all this equipment to this stroller and still hold my child?

I started with taking some basic measurements of the ventilator I knew we would have at home. Our RT told us we would be set up with the LTV 1150. While I was at the NICU visiting Emma I asked the nurse for a paper measuring tape and took some measurements of the vent. I drew out a basic diagram of what I saw and that way I could go back home and create a faux ventilator place holder using boxes I had laying around. I found a box that was almost exactly the size and went with that. This box would be the base for my template when creating stands and mounts for her stroller. I used an old paper tube that was the same diameter as the oxygen tank and looked up online the oxygen tank size "D" because thats what the RT and I discussed would be a good travel size for Emma, and cut the tube to the length. This gave me a basic shape and size for the tank. I then took a look at our stroller and saw what space wasn't being used when the bucket was in place and where I could put things. Luckily, the stroller we got (City GO by Baby Jogger) had lots of unused space which worked out perfectly. I made a basic 3D bracket using cardboard and did a test fit and then used that for my template to cut the wood pieces. With each piece I cut I would place and test fit it so the next template could be adjusted if needed. I used wood glue and brad nails to lock it all together. I then cut 1" slices of some PVC tubing, cut that slice in half so I had 2 "C" shapes and was able to heat them up with a heat gun and place it over the paper tube I had for the mock oxygen tank. Heating the PVC up allowed it to loosen the shape a bit and got the correct curve of the tank. Once cooled, I screwed it into the wooden bracket. I added a few nylon straps and plastic buckles that would attach the wood bracket to the stroller and added some straps to hold the oxygen tank. Once on, I was able to place my ventilator box, and my paper oxygen tank in place to do a final test fit. Everything worked and looked great. I added some purple paint and a cute decal I made for Emma that says, "Never give up".

That project alone for her stroller mount only took one day to make. It was super easy and quite fun. But this mount has saved us so many times and we are able to now go out and stroll her around town going shopping, out to dinner, or walks around the neighborhood. Another project I just finished working on was her Red Wagon.

For her 2nd Birthday my mom got Emma a little Red Wagon for us to be able to go to the 4th of July firework show (weather pending) as well as many other "off the beaten path" adventures like farmers markets and such. Places that the stroller might not do too well due to the sandy soil we have here. So this was another fun project of figuring out how to make this work for Emma. As some of you may know, Emma can balance in a sitting position on her own now for many minutes at a time, however, she will eventually fall back until we pull her back up to sit again. While this is great and all, having her sit up by herself in a moving wagon going over bumps and dips wouldn't be ideal, and she would likely fall forward or backward. So I knew she needed some sort of chair. I looked around and ended up finding a fairly inexpensive booster seat that you use in a car for older kids. I knew it would be large for her but, I thought it would be perfect. It was soft, had a full harness system and would be great for her to be able to sit up, be strapped in securely, and would sit well in the wagon. I looked online and found Wal-Mart had it for around $30, after shipping. I checked the measurements and it literally couldn't have fit better in this wagon. I was so excited and for the price, you can't beat that. I got it in and was able to mount it with a few bolts and some clips I got from Lowes. I then made a ventilator mount and mounted it to a piece of wood. Again, I used my ventilator box and was able to mock up this mount. Once made, I did a test fit with the real deal and it worked great. I mounted it to the bed of the wagon and did a test fit of all the components. We even went for a rough test ride last week, just for fun. I still had some work to finish on it, such as the oxygen tank mounts and the medical bag mount. I made a few tweaks and it works great. I even added a cute umbrella so she has some shade in the event the sun is out, which is very common in Orlando. I got this over at Academy Sports for $6. It's super cheap and you really can't beat it.

So you may be asking yourself, Why did I read all of this when you've posted about this in the past? Well, the thing is, having a medically dependent child isn't as bad a most people think it is. I honestly think we have things way easier than most of our friends with non-medical kids. Maybe it's our situation, and how we try to stay positive, but it's much more fun and freeing than we thought it would be while we were still in the NICU. You CAN do things to make your life "normal." You don't have to live life stuck inside your house. I know everyones situation is different and may have more complex issues -or more kids- than us, however, thinking outside the box is what helps. When someone tells you, "That's NOT possible," laugh and say, "Just because you haven't figured out how to do it yet, doesn't make it impossible." I've heard people say, "You won't be able to do that" or "You need a special medical chair for this." If you can make it yourself, do it! You don't need to spend thousands of dollars on things you can retrofit. Plus, the more you can customize for your child, the more special they become, because custom stuff is super cool.

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Photos below show the wooden stroller mount/ ventilator holder that Michael made for the NICU in October after they were able to purchase the same stroller we have (City Mini GT by Baby Jogger) so other parents can take their vent-dependent babies on stroller rides around the hospital like we were able to do with Emma in March 2018 when we got back from her surgery in Michigan. The one he made for Emma is painted purple. Also in the wagon photos you can see all of Emma's necessary equipment in or attached to the sides, while her medical backpack hooks behind her seat.