Cast day #2 Day is here.
It seems like yesterday that we were here having his first cast done. I know that we were so nervous on what to expect and what life in his cast would be like. So far Alex has done exceptional. He had learned to sit up in his cast. We have found that the cast has made him more comfortable. He drinks more in his bottle, and has started eating baby food.
Alex getting his pre op check up.
Having fun before his next cast.
Time to go back. After he turned 6 months, I was able to back with him in the operating room while they put him to sleep.
Sweet baby coming out of anesthesia.
Watching the fishes while waiting for our X-ray.
X-ray time. Hopefully this cast improved his curve even more.
So what is life like with an infant in a EDF cast? Not that hard. It is very normal. Alex does everything a baby would do at his age. He sits up, rolls on the floor, eats baby food.
We make some slight accomodations such as:
* always keeping a waterproof baby bib on, since he does have reflux and is teething. ( I highly recommend Maxey Moo bibs. They are big enough and are waterproof. You can get about 10 bibs for about $20.)
* changing a diaper can be a little tricky, but once you get the technique down it is easy. We pull the diaper up above his hips in the back and then take the front top part of the diaper and tuck it under his cast, then fit the tabs. We then roll him on one side to tuck the back of the diaper into the cast and then roll the opposite end and repeat. So far we have not had any issues with blowouts or pee.
* he wears a Knit Rite shirt, we opted for the turtle neck with sleeve version. Normally when they cast, they put a tank top on. We found the turtle neck with sleeves has helped with under his arms to not irritate his skin. The wonderful Orthopedic specialist Lee, cut the neck part of the turtle neck and used stitch witch to turn it into a t-shirt. I suggest that when they are casted, ask for a second shirt so you can change them out.
* keeping Alex’s shirt clean is actually pretty easy. Once a week we take off his shirt and wash it. We have 2 shirts that we rotate. We are able to take off the shirt, which is pretty easy. I believe there is a YouTube video that can show you. We found that by pulling the shirt in opposite directions on each end, makes it easier to guide through the cast, making sure that it does not bunch up. Putting the shirt back on is a little tricky, you just try to feed it through the open holes and remember to pull in opposite directions to get it through and not bunch.
* washing his knit rite shirt, we use Deft and hand wash. I scrub it in the sink really good and let it soak for about an hour. I then ring it out and let air dry for about a day or two. You would be surprised on how dirty the shirts get, you would never know, the sink is usually extremely grey when we are done.
* bathing him is a little different. Kinda like when they were infants and you did sponge bathing. I use the Johnson and Johnson disposable baby washcloths. I found that they hold less water than a regular washcloth and are really soapy. I place a towel on the edge of our kitchen sink to bathe him. Since his cast covers most of his torso, I wash legs, arms, neck and head. I then take off his diaper and roll the knit rite shirt up and wash his bottom.
*duct tape. Will be your best friend. The hospital actually puts on the duct tape for us. The first time we went with batman. The second cast will be little monsters. You can buy duct tape just about anywhere. I bought ours on Amazon. I usually have a some that we keep around, just in case it frays or comes off. I like the duct tape, because it helps protect the cast from getting wet, plus, you can have a little fun with the design.
* Alex fits in his car seat really well. We were worried that he may be too bulky. He was just fine. With some room to spare. The Doctor seems to think the cast weighs about a half of a lb.
* if you are looking to find info about infantile scoliosis, they best resource for me was to join a Facebook group that was for Early Onset Scoliosis and Mehta Casting. There are a group of parents that help support each other through this journey. Many different cases and great advise. I find the group so encouraging and helpful.
Other than that, life is pretty normal. We just monitor Alex since he is so young, on how fast he grows. They would like for them to stay in the cast as long as they ca, but Alex grew about 4 lbs in about 4 weeks, so it was definitely time for a new one.
His first cast took his curve from 58 degrees to 30 degrees. Hopefully the second cast will be even better.
So far our journey has been positive. Children are so resilient. He is happy and I am so proud.