August 11, 2006

Josh woke up and went to work like any other day. KayTar and I had to wake earlier than usual, because BubTar had spent the night at his grandmother's house and we had to pick him up. I loaded her into the car, sleepy-eyed and pajama clad to meet my mother-in-law at her place of employment for the BubTar hand off. She seemed fine. Sleepy, of course, but fine. We went in the school building, gathered BubTar and his things and headed off for home.

Once we got home, I plopped her on the living room floor and went to make BubTar breakfast. When I came back in the living room, she was behaving strangely. She couldn't seem to pick her head up off the floor. Her eyes were closed, but she was clearly awake. She wouldn't respond to me. I picked her up and she was a dead weight. She tried to open her eyes, but they just rolled back. Her head was stuck in a sideways position. She didn't look right. She started vomiting. I called our new pediatrician and said, "I think she might be having a seizure, but I'm not sure." She said to come in. I called my mom and she came over to ride in the backseat with KayTar. We dropped BubTar at work with Josh. By the time we got to the pediatrician's she was sleeping heavily.

As I was signing in, the receptionist said, "We have a room waiting, you can go right back." The pediatrician came in immediately and looked her over and sent us to the hospital. The exam sheet from that day said, "Developmental delay, dysmorphic features, new onset seizures. To Children's Hospital." Off we went. The pediatrician called ahead and we were immediately put in a room. The resident came in and took her history. There were so many questions. I answered the best of my ability, but I had no idea how to know what details were important enough to be included.

I was supposed to be getting ready to go on a beach vacation with my parents and instead, I were sitting in a hospital room, my world upside down. My dad came by on the way home from work. I told him it was fine to take my mom home, since she had no car and asked if they would pick BubTar up from Josh at work and keep him until we were released. I told them to go ahead and get ready for the vacation, if nothing else they could take BubTar and let him enjoy it. While both my parents were there, I left the room long enough to use the bathroom and get cash from the ATM. I had to walk across the indoor bridge to get to the ATM, and I remember passing the chapel. I thought, "How long will we be here? Is this somehow the beginning of the end? Will I be in there praying for her one day?" I remember passing sick kids and wondering if that would be us. I remember my eyes filling with tears and walking briskly to the bathroom to compose myself. I remember being afraid. We'd been to the emergency room before, for pneumonia and RSV, but I'd never felt like it was a preview to the rest of my life. I had always known we would go home and life would be normal again. I didn't know that anymore. It had only been weeks since we had seen the pediatrician and found out things weren't right, and now here I was, standing in the hospital hallway and I didn't know if anything would ever be right again.

Once everyone left, another doctor came in and asked the same questions that the resident had. I remember discussing Blue's Clues with him, although for the life of me I can't remember the context. He was a Steve fan. I liked that about him. After he left, KayTar finally started to rouse and about that time a horde of doctors descended upon us. I have never, to this day, seen so many doctors in one place. There were at least ten, maybe closer to fifteen. I felt so small and overwhelmed. There were even more questions, there were white coats and notepads, stethoscopes and sympathetic smiles. KayTar colored happily while I spoke with the doctors, effectively ignoring them. She used to ignore everyone. They did a cursory neurological evaluation and asked more questions. And more questions. Finally he recommended an EEG and gave me his card. He said he needed to see her in clinic. He also told me she needed to see a developmental psychologist for a full evaluation and gave me another card. I woke up that day with only a pediatrician. Six hours later, I had a neurologist and developmental psychologist and I had met more doctors in two hours than I had ever seen in my life. As they were leaving, two of the female doctors who had been whispering among themselves hung back. One said, "Those markers, they don't write on anything but the paper! How cool. Can I try it?" I said, "Sure, and she scribbled in KayTar's magic book. She whispered, "Wow." and giggled. I giggled, too. It was the most normal I had felt all day.



My sister came by to keep me company a bit later. She went down to the EEG lab with us. KayTar did not care for the EEG much. I had to told her down while they put the electrodes on. Then I had to lay with her in the dark, willing her to sleep after she had just taken a post-episode nap that lasted for hours. It was so stressful and as soon as she was asleep, I had to wake her again. Neither of us were happy. I was so emotionally exhausted, I could feel it in my bones.



We went back to the room to wait for results. Josh arrived sometime after the EEG was done, he had a migraine. He came in and slumped over in a chair. Before my sister left, I ran to get McDonald's from the hospital restaurant. I hadn't eaten all day. And then we waited. And waited. Finally, the resident came in and was about to explain the results when our room phone rang. It was our pediatrician. She had already spoken to the hospital and was calling to give us the very results the resident was there to give. She was so on top of things that she had beat the hospital staff to the punch. It was one of several times that day that I was reminded that we were in very, very good hands. Eventually we were released and I sank into bed that night more tired than I had ever been in my life. The next day we did meet my parents for the remainder of the vacation.



But that day, that trip to the hospital, it was the beginning. That was the day this crazy journey of ours started. The day that it really sunk in that this life, KayTar's life, our life, was different. We already knew that things were not at they should be, but this was the day when the rubber hit the road. The first time that our feet were firmly on this new path. This was the first time I looked out at the rest of my life and saw nothing but the unknown. This was the day that changed me. When I walked into the hospital that day, I knew I was a parent, but when I left, for the first time I truly understood what that meant.

This is my day late, dollar short submission for yesterday's Hump Day Hmmm. The subject was "The Journey" so I couldn't resist, even if it meant being a little late. Click the link to check out the other submissions.

Transference.

I am a procrastinator by nature. This began in school, of course. I've never completed a project more than 24 hours before a deadline, at least not once my parents began leaving it to me to get things done. Homework was often done in my car before school or inside my desk in another class. Though, I was always an excellent student, even half-assed work generally garnered an A. This has transferred to life, to the workplace. I need my employers to give me, what have been called "drop dead dates" or I can't organize my workload. I need to know the final moment something must be completed, and then I organize accordingly. Instead of working towards a goal from the beginning, I try to time it from the end. This has now transferred into blogging, evidently, because today is the day after Hump Day, and here I am with a Hmmm.

School. It's a timely topic. My son just started Kinder this week! He is attending private school, a half-day program. There are a few possible topics built in right there. But that isn't what I'm going to discuss. My other child, my baby KayTar, will be, most likely, starting school herself in February.

My baby! In public school!

It sounds distant, doesn't it? February. But in October, we have our first meeting with the district. Next month, she has her very last ECI evaluation. Services will continue, but only until the switch in February.

We never intended to deal with the public school system. We decided to put the children into private school before there were any children in existence. It was a given for us. Financially, it is a stretch, but it is worth it for us. Then came KayTar, and not only will we have to enroll her in public school to allow her to get the assistance she needs, we have to do so when she is 3. On her third birthday, specifically. In six months. And I am wholly unprepared. It was difficult for me to send my capable, social, five year old to school this week, and it is only a half-day program at the same school he attended last year. I can't imagine dropping my three year old KayTar at public elementary.

First, the school district will review her paperwork that is transferred from ECI. Then they will do their own evaluation of KayTar's development. This will stand alone, not affected by reports from ECI or from her current private therapists. It will only be what they observe during the session. Her team leader/developmental therapist said, that with her hearing loss, motor function and speech delays, along with the feeding disorder, she will likely qualify for the classroom setting, half-days, 5 days a week. As she said that, KayTar read a word out of the book they were looking at together. Her therapist looked at me and said, "But don't let her do that in the evaluation. I don't know if they'll buy it if they realize she is reading." I think she was half-joking, but it concerns me for two reasons. First, I can't control when she reads. We were driving down the road two days ago, and passed a Work Boot store, and she pointed and exclaimed, "Work!". The list of things she reads it still growing, and it cannot be controlled. Second, I don't want to ever have to downplay her strengths in order to have her weaknesses addressed. Yes, I am fully aware of her capabilities and incapabilities. I have a realistic view of what she can and cannot do, and I know that she needs services to fulfill her educational needs, whether she is reading or not. I want the school and the teachers who are working with her to accept this as well. I don't want her to be disqualified from receiving assistance for her deficits, because she is ahead in certain areas, and I don't want her strengths to be ignored in favor of her weaknesses. I feel that this will be a difficult balance to achieve, and that is worrisome. It cannot be remedied by private education, at least not in our area, because even the best schools are not equipped to handle children with any sort of substantial differences.

In February, as I've mentioned, we lose her amazing insurance. All other plans that we've looked into do not cover private therapies for children with developmental delays or disabilities past the age of three. No coverage. If she does not qualify for services through the district, she will fall through the cracks. I am so thankful for the Birth to Three initiatives that have provided such excellent services for us and others like us, but age three is not when these issues end. Private therapies cost a pretty penny, and right now, she receives (from both ECI and private therapists):

Developmental therapy once per week, 30-45 minutes
Physical therapy once per week, 30-45 minutes
Occupational therapy, once per week, 1 hour
Speech therapy, twice per week, 1 hour each session
Nutrition evaluations, once per quarter, 45 minutes

There will be no way to continue a load like that without assistance. And none of these therapies are frivolous, they are all necessary for her to continue. So, I hope that when the time comes, the district will decide she qualifies for their programs. Our fate is in their hands, essentially.

For those of you with older children, who have navigated the murky waters of the therapy to district transition, how did you manage it? Is there anything I should know? Wisdom about the IEP process? I have many books to read, but I know that in the end, personal experiences are much more valuable that anything that I can read in a book. If you've got it, lay it on me.