I like the title a fellow mom blogger chose for her son's blog, Terrible Palsy
For those not dealing with the term Cerebral Palsy (CP, a broad term for a problem with the central nervous system) it is and can be and will be terrible. I had thoughts in my head all last night about a 'what is Caleigh doing/achieved at 1 year' post. I thought I would type it up tonight, but I was sadly mistaken. Not to worry those thoughts are still in my head, but they have been pushed aside by the turn of events that happened today.
Lets begin with a little history. When Caleigh came home from the NICU in March, I read somewhere that we should go see a developmental pediatrician. That they would be able to help 'see' a baby with special needs a little better than a regular pediatrician. So I found one of the only DP's in the area, we had to apply to get an appointment. It was like a private school application I swear! One month later we found out that we had been 'accepted' to see this doctor and our first appointment was 4 months away. I thought wow, everyone must be taking their kid there. It will be worth the wait.
Flash forward to today, 9am as we sit in front of this new doctor. Now let me interject here......all of our doctor's have been with us since the beginning. They are family, they know how positive we are about Caleigh's situation. They are optimistic as well and know how to talk to us about certain things. We aren't stupid.....we know what 'could' happen. Ok, so you may see where this is going...back at the new doctor's office as we sat in front of her my mind raced. She started out slow asking about the last 4 months of Caleigh's development. What can she do, what can't she do, what is our PT doing with her? Then she did a physical exam. Caleigh hated it of course and screamed the whole time. We sat back down and I got Caleigh calmed down. Then the suggestions started pouring out of her mouth. I know I heard them, but I kept looking down at the woman's necklace. It was large, shiny, almost like silver bangles. Then her dress, it was pretty, green and white something I would have worn 2 years ago. She was wearing a white sweater......... all the while I was listening to the horrible things she was saying about our baby. Why was she being so mean? I took every word that came from her so personally. I know it is her job as a doctor to prepare parents and give her opinion on what the truth is, but jeez. The tears filled my eyes, I'm sure they must have looked glassy. Not a drop fell out. I glanced at Eric and his eyes were the same. I recapped in my head the things she said......Cerebral Palsy, Mental Retardation, splints, prone stander, we needed to get genetic testing done, quadriplegic, Caleigh's head is too small, her IQ is too low and she doesn't expect Caleigh to move any further ahead than what her abilities are right now. We are to come back in 6 months and bring our PT with us so that we can order wheelchairs and adaptable equipment to make our lives easier. Easier? Is she joking? She said that she would give it 6 months but she is pretty sure there won't be any progressions during that time. Every alternative therapy I asked about was shot down. Basically nothing will help. Keep her healthy and I will see you in 6 months....... she walked out the door. Now don't get me wrong she did her job, she seemed really sympathetic, but very matter of fact at the same time. She spent an hour with us.
Eric and I walked out of her office shell shocked. Teary eyed and feeling like we had just been beat we slowly put Caleigh in the car. Each of us hugged her and told her we loved her very much. She cooed and made it into her car seat happily. We drove to the Olive Garden and ate lunch. Our second time in a restaurant with Caleigh. She was exhausted and slept the whole time. We cut our lunch a little short, I told Eric I wanted to leave. I was tired of people staring and the room seemed to be too crowded for my liking. We got back in the car and made our way over to Cook's. We had scheduled our neurology appointment for the same day thinking it would be a good fit, but now we weren't sure we could take anymore. We arrived early hoping we could squeeze in an outpatient bone density scan that we needed to get done but the paperwork wasn't right so we were sent away. We made it to the neuro appointment and waited for an hour to do Caleigh's 4th EEG. We just thought we were beat down at that point! An EEG isn't fun while they put all the probes all over the head. There is scrubbing and pushing and Caleigh just wasn't having it. She was screaming bloody murder. Eric and I were all teary again. Finally, I couldn't take it anymore and picked Caleigh up. The tech lady wasn't too pleased, but it wasn't her kid laying on the table with huge tears rolling down her face either. Finally we started the EEG and Caleigh was able to take a small nap. When it was over we went to our neuro appointment. I love our neurologist. We call him Mr. Rogers. We got there and I told him that we went to see the developmental pedi that morning. He says yeah, she talked to me and she won't be seeing you anymore. Huh? Ok. What? I tried to relay some of what she had told us and he basically let it roll right off his sleeve. Like yeah, whatever. He had good things to say about Caleigh. He was excited about her eating 19ml an hour and only being on TPN 14 hrs a day. He was pleased with her head growth but did say that he wished it would grow more. He was happy with her cooing and trying to hold her head up. Just like a Mr. Rogers would do. He did say that Caleigh seemed a little more tight (spastic) since the last time we saw him. He suggested that we go to the spastic CP clinic that one of the neurologists has. At that time we will see a bunch of specialists and they will decide what Caleigh needs in terms of equipment. We will be doing that in October. As far as seizures go, Caleigh's brain waves have "matured" which is a good thing. There is one area in the back left lobe that still has some spikes to it. The Keppra seems to be doing the trick and so far we are infantile spasm & grand mal seizure free. We left his office feeling better about Caleigh's outcome.
Our day was just plan tiresome. I don't think we plan on going back to the developmental pedi. We have enough doctors appointments as it is and why put ourselves through the agony when we can get positive feedback and suggestions at the neurologist. The power of positive. Why surround Caleigh with negative? Sometimes a dose of unsolicited reality is useless.