Hope

My pediatrician spoke with the neurologist yesterday regarding KayTar's seizures and the different possibilities. After observing her in the ER, taking the family history of migraines into consideration, as well as the progression of the seizures; he believes it is "migralepsy". Yes, that's right, "migralepsy". It sounds made up, doesn't it? Migralepsy is exactly what it sounds like, migraine induced epilepsy. They started her on Periactin today, which is actually an antihistamine, but it works as a prophylactic to prevent migraines in babies and toddlers. The theory is control the migraines, control the seizures. So we'll see!

I know this is only one small piece of the total puzzle, and the piece might not even fit, but just HAVING a piece in my hand feels like a miracle! It feels so incredible to be doing SOMETHING. I am so exhausted by standing and twiddling my thumbs while my baby suffers, it is amazing to finally have something to go on, even if it doesn't work out.

This doesn't explain the delays, the eating problems, or the aversions, but it is a start! There aren’t words to describe how wonderful this feels!

On another note, I was referred to a geneticist. The first available appointment is in January of 2007. I took it, but hopefully we’ll have answers long before then. I can’t imagine waiting that long to know.

Video of KayTar-VS-Evil Shaving Cream

This is a video of KayTar and the shaving cream. Isn't it unreal?!? We didn't think it would happen the second time, but it did. Needless to say, we've moved her sensory eval to the front of the line.

Hard Day's Night

We spent last night in the ER. Yesterday evening I noticed KayTar acting a little strangely, so I kept a close eye on her, and pretty soon the telltale head-cock began. That's how her episodes start, she cocks her head to the left and doesn't move it. Even if she is crawling, her head is almost laying on her left shoulder. Then her eyes closed, then they started flickering. I took her in a dark room to hold her and pretty soon after she threw up on me. These episodes last about 30 minutes. I called the pediatrician and she sent us to the ER for emergency head imaging.

We arrived at 9pm; we didn't get a room until 12:30. At 2:30 KayTar finally fell asleep, (she practically passes out once the episodes end, and then gets her energy back after a bit, great fun to have an energetic toddler in the ER for hours on end) and at 3am they did her CT scan. At 4am, we were released.

In the ER we were told she has Dandy-Walker, an unrelated brain abnormality that is essentially a herniation of the brain below where it meets with the spinal column. It does not cause seizures or developmental delays; it was just something they found. It generally isn't problematic; she just won't be able to play contact sports. We were also told that on one side of her brain, the ventricle that drains fluid off the brain is abnormally large, which isn't a problem either, it is just strange.

Today I spoke with the pediatrician and she called the hospital to see if they had a neuro-radiologist in today to re-read the CT scan, and he said that it appears to be normal. Last night she had two obvious abnormalities and today we're told it is normal. That doesn't sit well with me. It bothers the pediatrician, too. She is calling neurology to push to have KayTar's MRI done much sooner if possible. These episodes are progressing and we have no answers. I am also going to ask her to have a third person read the CT scan, just so we know for sure. If someone says normal, and someone says there are problems, I need someone to break that tie for me so I know what to believe.

On a side note, this is the first episode Josh has seen, and it triggered a memory of something similar that happened when KayTar was about 6 months old. We were shopping and she slumped over in the cart, then she acted strangely for a while and kept her head cocked to the side, then after a while she fell asleep suddenly. I had forgotten about it, because at the time, we thought she had hurt herself when she slumped over, but now we think maybe that was the first episode, and she slumped over from the head-cocking at the start of it.

If that was really the first episode, then she had one last August, one in May, then July 27th, August 11th, and yesterday. Lately they've been happening on a two-week basis....it’s quite a jump in frequency.

I really hope that the MRI is moved up and we have something concrete to deal with soon. I don't want anything to be wrong with my sweet girl, but at this point it’s clear that all is not as it should be. She has lost two separate sets of words, the seizures are increasing, and she isn't developing at a normal rate. I just need answers. I want the MRI to show us the problem. I want to be able to help her, but right now it feels like my hands are tied. All I can do is wait. It is such a helpless feeling.

On a different subject altogether, Bubba made it through the night at his grandparent's house without calling us to come home! Since we were at the hospital, we couldn't have picked him up in any case. He didn't even ask to call us this time! We've tried this sleepover thing many times and it always ends in up picking him up. Our boy is growing up!

Shaving cream + KayTar = Vomit

I think a part of KayTar's issues are SPD. Josh and I did spent the morning doing additional research, and we found that she can be affected across the board, in both hyper and hypo sensitivities. We went through a checklist and the number of signs she exhibits is unreal.

This morning we let her play with dry oatmeal (pouring, scooping, throwing) in her highchair and she really enjoyed herself. Josh thought it would be fun to let her play in some shaving cream, too, so he squirted it onto the tray. KayTar touched it, immediately grunted and raised her hands to us to say "Get it off!" and before we could wipe her down, she gagged and threw up. Twice. It was the strangest thing I have ever seen. She vomiting because of a sensation on her hands. I didn't know that was possible.

I know this doesn't explain the seizures or the loss of words, but it does give us another piece of the puzzle. We are going to try it again later to get it on video to show the pediatrician, neurologist, and evaluation team. I am also going to call Monday and see if we can push her sensory evaluation to the front of the line, instead of one of the last things to be evaluated.

Torture at the hands of Barnes and Noble

Today I've been jumping around the Mamalamadingdong blog tour and I REALLY want the book. I went to Barnes and Noble tonight to see if I could pick up a copy and while I was there, the Children with Disabilities section beckoned to me. I briefly read up on Autism Spectrum Disorders, and SPD. Some of KayTar's symptoms (is that the right term? it seems odd here) lean towards an ASD, like her word regression and her reluctancy to interact with strangers, and even family members outside of the four of us; but on the whole it doesn't seem to be a fit. She has several things in common with SPD, but in opposing types. She is oversensitive to textures and foods, but she loves to be touched and cuddled. She loves playing in water, sand, and the mud, which negates the texture aversion from this perspective. On the undersensitive side, she loves to rub her blankey, she loves to be hugged and cuddled (by the right people); but she is very responsive if she is hurt or receives a shot. She does pull her own hair at times and hit herself on the head, which are also signs of undersensitivity. On the muscular front, she was always a floppy baby, she actually kept her head flopped back purposefully for the first 4-6 months of her life. She was the hardest baby to hold. She sits in the W positions much of the time. She isn't walking, BUT she doesn't appear to be clumsy and she has excellent fine motor skills and shows a strong preference for her right hand. And on and on it goes. In SPD, she has characteristics in just about every category on both sides of the fence. Though even if SPD fit perfectly, it wouldn't explain the language regression or the seizures.

Basically, I am torturing myself. I want to badly to understand what is going on, so we have a direction to go. I want to be able to help her be the best KayTar she can possibly be, and I hate that I have to wait so long before knowing how I can help her. The research isn't what is bothering me, it actually helps me feel useful and prepared, but the waiting is really killing me. We still have some scary possibilities out there, and waiting for the results is the most difficult thing I have ever had to do. I am ready to find the answers, whatever they may be.

Different...

A month ago, when Josh and I decided I should stay home with the kids, it was a temporary arrangement. "Just until KayTar is caught up." is what we said. Last night I realized, it might not just be a year, and for the first time I realized I will miss it.

It's not that I love my job SO much, or that I don't LOVE being here with the kids...it's that “my" life is gone. I know that is silly and selfish, and in all honesty I don't mind it as much as I imagined I would. It is just so different. I've lost my social life altogether. When I worked, the kids were in daycare at my facility, so I was able to see them during my free time throughout the day, but I was also able to be an adult for several hours a day. I could discuss things other than Larry Boy’s super suction ears, or which Wiggle's songs are boring. I miss that part, the adult interaction.

I'm also a member of a birth club bulletin board. I've been posting since before KayTar was even born. Lately, I feel less and less a part of things there. Our life with KayTar is just so different than what the other parents are going through. I watch videos of children naming body parts, or drawing faces and it floors me. I see picture of them running around, playing ball, and I can't believe it. These kids are KayTar's age? No way. Josh says things like "Get off of there, you're just depressing yourself." but I'm not. Its not upsetting to see the wonderful things these other children can do. The problem is we don't have much in common anymore. I have made wonderful friends there, which is the main reason I keep visiting and posting as much as I can, but I feel like that time in my life is also slipping away.

I think these are the main reasons I've begun my foray into blogland. I'm hoping to find parents to share this new life with, in a place where we aren't only brought together by our similarities, but also by our differences. The journey is long, and it's nice to be in good company.

The Waiting Continues...

Today we had our ECI consultation for KayTar. Basically, we signed a lot of paperwork and set up a lot of appointments. She has three evaluations (speech, physical, nutritional) scheduled for September, with a fourth (sensory) to be scheduled soon, as well as her neurologist appointment, MRI, and well baby visit. Two months ago, I thought everything was okay. I had some concerns about KayTar's development, which is one of the reasons we switched pediatricians, but I had no idea the depth of the problems we were facing. Her pediatrician had never voiced a single about her development, in the year and four months we had been seeing him. I noticed things here and there that weren't quite right, but because he never mentioned it, I assumed I was being "that mom"...the mom who worries about everything when there is nothing to worry about, the mom who should have the parental controls set to keep her from Googling anything and everything under the sun that could be wrong with her child. When we went to our first appointment with the new pediatrician, she noticed all of the things I was concerned about within ten minutes of being with KayTar. We treated the ongoing constipation she had been experiencing, and set up a second appointment to discuss the delays.

KayTar is eighteen months old. She is still on an all baby food diet, because she cannot tolerate anything thicker than a Stage 2. She loves to "eat" things like crackers or cookies, but she spits out all the pieces. If a piece sneaks by her, she gags and throws up. She cannot even tolerate table foods like mashed potatoes. She is not walking or standing independently. She only started crawling on her hands and knees in the last month. She is currently only saying two words, "Go." and "Sit." She had more words in her vocabulary, but has lost them. She used to say things like "Mama." "Dada." "Bubba." "Dog." "Diaper." but she doesn't anymore. She has just recently learned to play with a few of her toys appropriately, things like her Dino Ball Drop and her stacking rings, instead of just mouthing the pieces or banging them together. She cannot follow commands, ie. "KayTar, come here." or "Roll me the ball, KayTar!" She is still very much an infant in a toddler's body.

On top of the developmental delays, she has begun having seizure-like episodes. She had her first one in May, and we were unsure of what was happening. Her previous pediatrician tested for meningitis, which came back negative, and never followed up. About a month ago she had a second episode, and then a third, two weeks after the second one. They seem to be progressing.

When I walked into that second appointment with the new pediatrician , my whole world changed. There was so much information to absorb that it just wasn't possible...for days after, I kept waking in my sleep, remembing bits and pieces of what she had said. "The delays are significant and we have to find the answer." At this point we are still waiting. We have had blood work taken and results returned. It is not chromosomal or metabolic. We had an EEG while we were in the ER for her third episode. It came back abnormal. I asked our pediatrician what our possibilities were at this point, and she said physical problems with the brain. It could be a structural defect, perhaps something didn't develop right prenatally, or it could be a tumor. We don't know. If the MRI is inconclusive, we still won't have an answer. September will be a long month.

After that appointment, I quit my job. I am now a SAHM, or rather, KayTar's administrative assistant. I keep her calendar and a notebook filled with contact names and phone numbers, along with appointment locations, instructions, and times. I am here to spend all the time I can with KayTar, and my older son, BubTar, and to keep things as normal as I can for both of them. Its amazing how one moment can change the entire course of your life. I can handle it changing my life, but I don't want it to change the lives of my kids. They deserve to enjoy their childhood and not have to worry about big things like this. I am thankful that this experience has taught me how to live in the moment. I don't spend my days fretting over the future, about things I can't control. I spend my days loving these kids and soaking up every moment and memory I can with them, because in the end that is all that really matters.