Cast #5 Day

We’re back!!!!!

Yes it has been a long time. Kinda nice. Lots of catching up to do since the last cast. 

Cast #4 had a very short life span. Lasted about 4 weeks if that. 3 days after the cast was put on, we had to go back to CHOA (Children’s Healthcare of Atlanta) and have it cut open on the top and make the belly hole a lot bigger since Alex could not digest food and let his stomach expand. About a week later he started uncontrollably crying. I figured it was teething  it wasn’t. After going through the list of what could be wrong, and not finding anything I had called my Mom. Immediately she heard his cry and said it was a pain cry. She asked me about his cast. Wow, how did I miss that? 

I guess that I try to rule out everything before jumping to the cast. I immediately called the doctor. Thank God for the 24 hour hotline. The on call doctor agreed the cast must be cut off. Now living where we do, I had the option of going to our local hospital or driving 1.5 hours to CHOA. Now common sense would say local hospital, except it takes forever. They do not care what his specialist says, they want to evaluate on his own, we have to go through the ER and wait about 4 hours. It was 10pm at night and I was home with my 2 year old. I could not just pack everyone up. 

So I had seen on YouTube a video on how to cut the Mehta cast off. I knew that many parents had cut off their child’s cast. So I called Mom and Dad and said to bring tin snips, we need to cut it off. About 20 minute later, they arrived and in 30 seconds, bye bye cast.

I felt so bad for little Alex. He was bruised and sore. It is so hard to tell with this kind of cast where they apply pressure since the outside looks straight. Poor Alex was so exhausted that he passed out. 

Since we were going on vacation to Las Vegas and to a waterpark we had opted not to have the cast back on. We were going to give him a cast break, to help his skin, learn some developmental milestones and eating more table food.

So our journey begins. Loved having my squishy baby back, we made the most of it. It was weird to have to buy him clothes since all he would wear was shorts. It was fun to pick out pajamas and matching outfits and even a swim suit. It’s the little things that you appreciate. Alex loved the feel of his skin. I didn’t realize that he had not felt it since he always had a shirt on.  We would have bath time instead of sponge baths.

So just a few pictures of Alex’s 1st Birthday cast free.


 Alex enjoying vacation!

Alex loves eating table food.

Alex has learned to stand and start to walk alongside the couch.

When we got back home for vacation, we knew the squishy Alex would not last forever. We called to get an X-ray to see how his curve was doing. It was 47 degrees. So not great, but not horrible. We decided it was time to have the cast back on. So here we are, cast day #5.

We enjoyed our last bath!

 A little rough, a little sad. Maybe this cast was harder on me than him? I keep having the feeling that he is going to have a hard time adjusting to the cast since he has been out of it for so long. I am praying that he will remember how to stand and walk. I know we still have some warm weather  and hate we can’t really be outside now.  But I know it is for the best.

So what is the design for cast 5? We thought Georgia Bulldogs would be fitting. So we will see how this next cast goes. Not sure how many more there will be. We just need to be patient and diligent and see how it all plays out.

Until next cast,
Alex and Mommy


Cast #4 Day!


It seems like yesterday we were here getting his 3rd cast on.  A lot has happened in the last 6 weeks.

Alex went about 6.5 weeks in his 3rd cast. Around 6 weeks we started noticing him gag, and vomit. It was so bad, that we were in our car driving and he started to projectile vomit and choke in his car seat. I have never in my life stopped a car that fast and jerked it into park and jump out of the car on the side of a road. We also noticed that he would get more irritable, due to being uncomfortable in his cast. He would eat less, since a full belly would make his cast tight. 

With Alex being so young, it is a wait and see kind of game. We never have an accurate idea of how long he will last in his cast. We know from the past that 4 weeks he is good, but around the 5th and 6th week, it is time to come off. This time we did not have to go to the ER and wait for them to take their good ol sweet time. We were able to go to the Dr.’s office. Pretty quick and uneventful. 

I don’t mind having the cast cut off before his next, it allows me time to get his skin back to normal. In the cast he is usually a little bruised and has some skin irritation. We bathe him in baby oil and use Aquaphor all over. I was worried that he might have forgot what a bath was like and scream. He didn’t. He loved to splash and play. His skin usually clears up in a day or two.

I enjoy this time. He is so squishy and huggable and seems delicate. When he is in his cast he is like a Lego baby. He seems indestructible and I don’t worry about him getting hurt. He is easy to handle and comfortable.

Life in a cast is “normal” to us. Alex has learned to scoot on his butt. He plays with his big brother, he chases the cat and tries to pull up on things.  He is normal in most ways. He definitely gets a work out with his cast and moving around. 

The summer time is coming and we opted to not have a cast break. We have changed from the thick grey shirt  to a white thin tank top with flaps to protect his under arms. We also ordered a cooling vest for him in the summer. It gives him about 2 hours of coolness. He loves it. It even keeps whoever is holding him cool also. 

The 3rd cast was able to get his curve to 29 degrees. We will wait to see what the 4th will do.


Cast #3 Day!

it is time agin for his new cast. A little different this time since he had to have his cast taken off  in the ER.  Our casting was scheduled at 10 am this time instead of 8 am. I was a little worried that Alex would be hungry. He did great. We were stuck in traffic for 2.5 hours and was late to our pre-op appointment. Luckily the surgery before us was running late due to traffic also. 


Since my husband was unable to come, my Dad went with me to make the journey.  He was really impressed with Children’s Hospital of Atlanta. We were glad to know that the doctor was going to do his casting earlier than we thought. Apparently the surgery before us was late and they had fed their baby. So surgery had to be postponed for 6 hours. So we got right in.

Alex loves smiling at the nurses and getting his pre-op check up. We get to choose a toy from the toy cabinet. He likes the cars. Then I get him ready in his gown and socks and then get myself ready to go back with him. We see the anesthesiologist and the Doctor and then we head off. Since Alex is older than 6 months, I am able to go back with him and put him on the operating table and wait for them to put him asleep. When is is asleep, I have to go. 




The casting procedure took about an hour and a half. Once he gets back from the casting we wait for him to come out of anesthesia. I let him sleep it off. Once he drinks some liquids and keeps it down, we can have the IV removed and start to go. 



Packed up and ready, we head down to the second floor for X-rays of his new cast and curve. Once we finish there, we head over to prosthetics for them to look over his cast since this shirt had a lot of plaster on it. The cast looked good, so we did not have to trim it. We did switch out the t-shirt for a tank top since the summer will be hotter. 



After all of that, it is time to come home and get used to the new cast. Thankful for a wonderful casting day!


ER Visit to get the cast cut off!

All right, I wanted to make sure that we post everything that you may be wondering in regards to the what if’s. I thought for sure that we would never have to have his cast removed for any reason other than when it was time to change his cast. Well, Lo and behold, the time did come.

Apparently, when it is time to change a cast due to the child growing and it becoming too tight, you need to watch them. The inside part of the cast over time wears down. The padding apparently wears and allows Alex to have a little wiggle room. With Alex wanting to be mobile, I had him on the floor playing with toys on his back. He moved to grab a toy in a way that he twisted himself just enough on his cast where it was pressing down on his right chest area.  I didn’t think to much about it, but when he wouldn’t stop crying and I had ruled out it wasn’t hunger, diaper or sleep, I immediately called the Dr. 

I was already concerned a few weeks ago because it was tight then. After calling the after hours hotline and speaking to a Dr. It was decided that the cast needed to come off. Since our hospital and Dr. Are about 1.5 hours away, I didn’t think Alex would have made the car ride. The Dr. Agreed and said to take him to the nearest place that would take it off. To save time, I called around to a few places to see, just so I don’t waste a trip. Glad I did. No one and I mean no one wanted to take off his cast, even when I told them they could call the Dr. Himself. I had to call back to the Dr. And told them no one would do it. They told me to go to the ER to have it removed and if there were any questions to call them.

My husband in the mean time wanted to just cut it off on his own. I knew that there were some YouTube videos on how to cut it off, but thought it was too tight ariund the area and didn’t want to risk it.

So off to the ER we go. Of course they really had seen many of these casts, let alone take one off. They all kept saying ” we will let the dr decide if they will take it off”. We waited hours for them to look at Alex. He was screaming and belligerent. I had to have the mama bear come out. I am a very patient person, but when it comes to my children and I had waited enough, I snapped at the nurse and told here that if they do not take care of him asap, I was going to cut the d@mn thing off myself. I could have driven to Atlanta myself by that time. 

I hated to be like that, but when your 9 month old baby had been screaming for 3 hours due to his cast, you do what needs to be done. After that, we were immediately taken to a room and very shortly had his cast removed. Happy Alex, happy Mom!

So next time, we will cut the darn thing off ourselves. I will not wait 3-4 hours in an ER. So it may be beneficial to watch the YouTube video in how to remove an EDF cast with tin snips.



Cast #2 Day,

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. 


Cast Day is Here!

Cast day is here! Alex will receive the first of several casts to help correct his scoliosis. Currently his curve is 58 degrees.

Up at 4 am in the morning to get ready to leave for the Children’s Hospital in Atlanta. I don’t think either Tom or I slept much the night before. A little worried about our little Alex and how he would do today. The last time that we were at CHOA (Children’s Healthcare of Atlanta), was for TJ’s torticollis release surgery. They are a great hospital. We don’t mind making the long drive to Atlanta, the care doesn’t even compare to the hospitals we have here.

All the bags were packed, GPS ready and all we had to do was wake Alex up. We felt bad because he wasn’t allowed to have any formula past midnight. We didn’t want him to be hungry and hoped that he would just go to sleep after we got him in the carrier. I let Tom wake him up and change his diaper. He was wide awake, smiling as usual as Tom got him ready to put in the carseat.

All ready in the car. Ready to begin our Journey. The ride to Atlanta is about an hour, as long a traffic is good. We were hoping that at 5am it wouldn’t be to busy. We made it in about an hour, so not to bad, and Alex slept the whole way.

As we get Alex out of the car and put him in his stroller, he gave Tom and I a look that just broke our hearts. He knew that he was at an unfamiliar place. He looked at us like “Mommy and Daddy what is going to happen?” I know he trusted us, but seemed a little nervous. But it doesn’t take Alex very long to get back to his happy self and smile.

Smiles on our way!

Smiles on our way!

When we finally found our way to the surgery floor, we signed it and got him registered. It was only a few minutes before they called us back to get him all checked in and ready for his procedure. The nurse took his temperature, his blood pressure and his weight. He loved having them check his heart beat and tried to eat the stethoscope.

Alex day of 6

We tried to lighten the mood and try and have some fun memories before they came to take him.

Alex day of 3                       Alex day of 2                       Alex day of 5

Once the Doctor came in and answered all of our questions, it was time to get Alex ready in his gown and hat and tiny socks.

He looked adorable. My little squishy happy baby. The doctor’s asked what color cast we wanted. We finally decided on black. We joked around that he could be BatBaby and ride in his batmobile that my dad made.

Alex in gown 2         Alex in gown

The hardest part of the procedure is when they take him back to the OR and you can’t go past the double doors. We had a great nurse named Dina that Alex just loved. I was so happy that I caught the most precious picture of him looking at her. She talked to him like he was her own son. She kept telling him that “Aunt DiDi is going to take good care of you”. So precious.

Alex and Dina            Alex to OR

Alex was in the OR for about an hour. He had a team in there with him.  His two doctor’s, their resident, the orthopedic team and his nurse.He was one of the youngest to be put in an EDF cast. EDF (Elongation, Derotation, Flexation). It is a process where Alex is put on a special table called a Mehta Casting Table. This special table allows the Doctor’s 360 degree access to put the cast on him. They first Elongate him (stretch him out) and then Derotate him (rotate his ribs to be back normal, currently his right rib cage sticks out) and then Flexation (make sure that he can move his hips/legs).

About an hour after he went back, Nurse Dina called and said they were just finishing up on his cast and he would be in recovery for a little while. Immediately after the phone call, both Doctors came in and talked with us about his cast. They were very pleased with their first cast with Alex. They said he looked like Batman and had used Batman tape. We were very thankful that they did not have to cast over his shoulders or cast part of his thigh. They gave us some basic info on cast care and what happens next.

A little while later, the nurses brought in my non squishy baby. He seemed worn out and just coming out of anesthesia.

Alex after   alex after cast 2 alex after cast

It took him about an hour of sleeping when the anesthesia started to wear off. They wanted him to drink some pedialite, but he did not like it. When he finally started to come to, he sucked down a bottle. Then my little non squishy baby started to be back to his old self. Here is one of the first pictures of his cast.

Alex in cast

After the anesthesia wore off, we had to wait to be discharged. After we were discharged, we had to go to the Doctor’s office to have xrays done to see how much the cast reduced his curve. Once we got the xray back we learned that his curve was reduced to 40 degrees. Not bad for a first cast. After the xray, we had to go to Orthotics to have his cast trimmed and fitted a little better.

I don’t know what was worse, the procedure or Orthotics. Once we got there, I guess I did not know what they would be doing to “trim” the cast. That was almost the scariest thing that I had ever witnessed. My little non squishy baby on a table, surrounded by several Orthotic people with goggles on, on top of the table with him, holding blankets over Alex while I hold his hands and a “saw like” device that cut the cast. It was like a moment out of a horror movie. Alex crying, doctor with loud noisy blade that vibrated the cast. We finally got the cast trimmed about 1/2 inch on the top, under the arms and off the bottom.

In the beginning they had a special tank top that he wore. The tank top was made of a special material that had silver strands woven into it to help with moisture and to help protect his skin. We were a little worried that the tank top would allow for the underneath of Alex’s arms to rub. The worker let us know that they did have a turtleneck version that had sleeves that may help. We opted for that. She did cut and sew the neck so it was like a t-shirt. After about an hour there, we were finally done.

Tom and I were so tired and hungry. By this time, it was about 2:30pm. Time to head home. Alex was definitely ready.

ride home

We were now ready for the Journey of how to live with the cast……

Alex’s Last Day Before His Cast

Trying to enjoy my squishy little baby before he gets his cast. It has been a crazy week for us, so I didn’t have much time to worry or even think about tomorrow’s casting procedure.


We tried to make sure we had lots of fun with squishy Alex. Snuggles, Giggles and Rolling. Alex had finally figured out how to roll and roll and roll. I am hoping he will still be able to roll in his cast. Not sure what to expect tomorrow, but feel like I had read as much information as I can and thanks to my new Facebook Group, had a lot of the common questions answered.

Rolling Rolling Rolling

We made sure to have lots of fun with Alex and his bath. We gave him his favorite rubber ducky. This will be his last “bath” until he gets his cast off. We will have to sponge bathe him from now on. I am sure he will be so sad, especially since he loves to splash and splash.

Bath Time with My Ducky

Bath Time with My Ducky

Lots of things to remember for tomorrow. We will be traveling to the Children’s Hospital in Atlanta to have his first EDF cast put on. We need to be there at 6am, which means we need to leave our house around 4:45 am in order to get there. Trying to get diaper bag packed, our bags packed just in case there are complications and we may need to stay. (I am always prepared for anything). Got my checklist of bigger diapers, bigger clothes, bottles, Alex’s favorite blanket and teething toys.

There are so many things that are running through my mind. Praying that little Alex will do well with Anesthesia and that he will be comfortable in his new cast. I guess that Tom and I are not as worried as most parents probably would be. TJ had to have a cranial helmet and I remember in the beginning we were totally freaked out. We had no clue about what life was going to be like with a cranial helmet. After a while, it just became the normal. We really didn’t notice it.

I just prayed that the doctor’s will be able to help Alex and get a good cast. They are not sure if they will have to put the cast over his shoulders or on part of his thigh, due to his size. He is a tiny little peanut.

I am officially a blogger!

I guess I am now an official blogger. Never in my right mind did I ever think I would blog. I never knew why I would even want to blog. Why would I want everyone to see everything I do? Isn’t that what Facebook and Twitter are for? But here I am. Blogging away, intrigued by the art of blogging.

So most are probably wondering why now to start blogging? My son is actually the reason. He was recently diagnosed at 2 months old with EOS (Early Onset Scoliosis) or Infantile Idiopathic Scoliosis. In short, his spine is curved. Apparently this occurs in 1% of babies.

As most good parents do, they research, they research and when they are done researching, they research so more. I wanted so badly to connect with other parents who had similar stories. I couldn’t find much, until I ran across a mother who had been blogging her daughter’s journey with Infantile Scoliosis and a few Facebook Groups. I thank God for her every day and for the groups. It may seem boring to some that she posts everyday life with her daughter, but it meant the world to me. Her blog hosted valuable information to me. There weren’t any books on what it really was like, but she had pictures and stories and answered the questions that we are all dying to know.

So this blog is dedicated to any parents that are looking for a way to connect and learn more from the journey that I am about to begin. I will post the amazing Journey that God has put before us, every step of the way. It also will be a way for me to feel good with the fact that our Journey can help others.