I realize that 2016 came and went and I didn’t put up a single post. 2016 began with what can only be described as a punch in the gut. Let me explain. With the boys being born very premature, we expected to have some developmental delays. Because of this we were enrolled in a program called Babies Can’t Wait. Babies or BCW is Georgia’s early intervention program that is designed to provide screening and therapy services to infants and toddlers up to 3 years old to enhance their ability to develop or catch up. BCW is a federally mandated program under the Individuals with Disabilities Education Act (IDEA).
We started with an occupational therapist we saw a few times a month shortly after they came home from the NICU. She would come to the house and work on a variety of “issues”. I would attend some of the sessions, but often times Chris and I would be at work when she would visit. It was pulling teeth to get a visit report, so I finally got very blunt and asked her what, if anything was she focused on. What were her goals, and how were the boys doing with those goals? I brought up my concerns; sensory issues for Nolan and Landon’s sometime odd walk. We also got a new nanny about that time who had worked with BCW before and she was not pleased with what she was seeing. Our new nanny was a blessing to our family. I contacted the coordinator and discussed my concerns. I asked for a new therapist. The coordinator told me the county was short on resources, and that she always got the best reviews on our therapist, and that I should give her another chance.
At the boy’s 2 year old checkup, our Pediatrician asked about how BCW was going. I shared with her that I was still frustrated, and that the therapist disregarded Landon’s turn out when he walked, his inconsistent gate, and the fact he fell randomly, more than seemed normal. It’s minor I know, but in my gut I knew something seemed off. Our Pediatrician wrote a script for Physical Therapy and said to give it to the coordinator and ask for a PT evaluation through BCW. This slowly got the ball rolling.
With the PT script in hand, I contacted the coordinator once again. She said she would see if she could find a PT with some availability and get us and evaluation, but again stressed that they were low on resources and it might take some time. About 2 months past when she finally called me back to let me know that she had found someone to at least come and do an evaluation. I would have to fill out some paperwork and they would be back in touch to schedule… 6 more weeks. Finally, a lady named Andrea comes to our house to do Landon’s evaluation. She was great! She gave me a ton of things to try at home that may help him, and this was only supposed to be an evaluation. She did recommend him for services; in fact, she recommended weekly visits, but he was approved for one visit a month which would start basically 2 months later. We were now into late summer/ early fall, but he was starting PT and just in time as he was getting worse.
Landon’s turnout was now an occasional limp. He had fallen more frequently. We weren’t sure if he was tripping over his own feet, if his hip was giving out, or if he was just clumsy. Yet, most days were good, very good. We still had our first therapist in addition to Andrea our new PT. The original therapist saw Landon on one of his worst days; he could barely walk… her thoughts on the matter, he must have slept wrong. And with that, I was done with her.
By Andrea’s second visit, she knew it was “something more”, but she wasn’t sure what that something was. It seemed like more than just coordination or strength issues. She had identified that whatever the problem, it was on the left side and causing residual effects on the right hence the inconsistency we had observed. She had a few things in mind that she wanted to rule out and said a pediatric orthopedist would be the next steps. She told me of a few locations that were affiliated with CHOA that she would recommend. We called and got an appointment as soon as possible, January 6th. This would be 3 weeks shy of they boys 3rd birthday. This process had taken me a year, but I was finally getting somewhere.
Landon and I arrived and I filled out all the paperwork. They started with a few X-rays of his hips and legs and then brought us back to wait for the doctor. Landon is typically a good patient, but in my opinion this was not one of his better days. Luckily, we didn’t have to wait long. The doctor came in and began by discussing Landon’s history. He had pulled all of his records from CHOA and fairly quickly jumped to confirming that Landon is a patient of Dr. Reisner (Pediatric Neurologist) and that he had a brain hemorrhage at birth and cyst on his brain. We discussed my understanding that the cyst was nothing more than the equivalent of a freckle and he agreed. He completed his exam in the room and asked if Landon would run up and down the hallway. Landon running at full speed was a sight. He looked very cartoonish and it was sure to bring a smile to everyone’s face. All the nurses stopped to watch and Landon loves the limelight.
Back in the room the doctor in a very nonchalant way asked if I had ever heard spasticity or had anyone be it the therapist or doctor mentioned tone issues. Those terms were not entirely new to me. The therapist has mentioned tone. I was aware that Landon had overdeveloped muscle tone, but Nolan has abdominal muscles. I just assumed when you have no body fat the muscles show through more… right? Well I was wrong.
There have been a few times now that someone’s words have actually taken my breath away. Then came that punched in the gut; I can’t possibly have heard you right moment. “How familiar are you with Cerebral Palsy”
I wasn’t familiar. I had a mental picture, but it wasn’t my child that had just run up and down the hall. So many thoughts immediately filled my head. Was he going to get worse took the top spot. Luckily, the doctor could see the wheels turning and quickly put my mind at ease.
Landon has Hemiplegia Spastic Cerebral Palsy. To break it down, CP is a neurological disorder, likely caused by the brain hemorrhage he had at birth. It is non-progressive! That was a big one for me. Hemiplegia means it only affects one side of the body. For Landon that is the left side. Spastic is the most common type of CP. It means there is a stiffness or tightening in the muscles. The muscles may fight each other by trying to tighten and relax when they should be working together making movements more difficult. He gets tired more easily. We are so very blessed that Landon’s case is extremely mild. The doctor said the best thing we can do for him is encourage him. Put him in sports, let him do everything he wants to do. This is a disability not a disease; it is chronic, but manageable. There are special therapies, he may need surgery if his tendons don’t grow at the same rate as his bones, he may need braces on his legs during growth spurts, all of those things can help increase his quality of life if they are needed. So, far they have not been.
I expected to walk into the orthopedist’s office and leave with something fixable. I have always associated those type of doctors with putting people back together once they have sprained, strained or broken themselves. The shock factor of that appointment was extremely high, but once that wore off. I was able to count my blessings. I have healthy children. Sure we may have more doctors’ appointments than most, but when I look at my boys in their preschool class, they are no different. We have been luckily that in all of 2016 Landon didn’t have a major growth spurts. I imagine when the next growth spurt happens, there will be some challenges. Until then, this diagnosis rarely affects our everyday life.