To know? Or not to know?

The MRI went well! I was dreading the IV, because they have such a difficult time finding a vein and drawing blood, and the veins in both of her hands were shot from Wednesday. The nurse put the IV in her wrist on the first poke and all in all it was a lot less traumatic than the blood work. They wrapped her good hand so she couldn't tear at her IV, because she HATES having anything stuck to her. She tears off everything, bandaids after shots, stickers, she was even able to take off her hand wraps on Wednesday.

Here she is trying to pull on her IV with her wrapped hand:


Once we went to the MRI prep room, the anesthesiologist gave her the shot of the magical white medicine through the IV- KayTar let out half a yelp and was out like a light. It was so amazing! The whole thing took about 45 minutes and then we were called back to recovery. While she was still under, her heart rate dropped a couple times and her O2 levels dropped as well. Her heart/lung monitor alarms went off three or four times. It was a little scary! But as soon as she woke up everything went back to normal. She jabbered all the way home and has been perfectly fine. All in all, I'd take an MRI over blood work any day.

We don't have any results. Because we had the MRI on a Friday, our doctor won't have the results until Monday, and we will be out of town from Sunday to Saturday. I want to call the doctor on Monday to get the results, but Josh wants to let it be until we get home. He thinks the vacation should actually be a vacation. I don't think he wants to get bad news and have it ruin the week...or get a clear result and be frustrated the rest of the week. On the other hand, I don't know if I can actually make it through the week without knowing, when knowing is only a phone call away. Last night I was so exhausted, I've been living for yesterday for two months now, and having it finished was such a relief...I know we still don't have the results, but having our part finished was such a load off. I haven't felt that tired in months...it felt like I was off duty in a way. It was a good feeling. It is a good feeling. Maybe I'll try and hold on to that feeling and make it through the week. Maybe.

Anticipation...

"So tedious is this day
As is the night before some festival
To an impatient child that hath new robes
And may not wear them"

The MRI is this afternoon.

You LOST her blood?!?

This morning I was awakened by a phone call. Of course I made Josh answer it while I pretended to sleep, but he nudged me and handed me the phone and it said Children's Hospital on the caller ID, so I took it. It was the lab. Evidently, when I took my poor sweet baby in last Wednesday they "routed one tube of blood incorrectly" and by the time they found it, it was too old to test. So I had to take my poor darling in again today. She was stuck two more times. Since last Monday, she has been stuck 5 times, all for the SAME blood work...and Friday she gets to have an IV for her MRI. I am so very sad. She looks like a tiny burn victim or a very cute boxer, I'll let you decide.








They offered to send a phlebotomist to my house...but I really didn't want to invite that kind of trauma into my home...and I also feel like the workers are at the Children’s Hospital are as gentle and as kind as they can be with her. We've turned it into a bit of a date, we go eat lunch in the cafeteria (which has yummy food like Chick Fil A), KayTar pretends to eat fries while I actually do eat my fries. We watch the waterfall for a bit, then we go visit the fishies (she tried hugging the fish through the tank today, it was very sweet). Last week they were having a carnival, so we went to visit the clowns and she got some neat stickers. And we wrap it all up with a nice round of needle poking and we are on our way home. It is still miserable, but it takes a tiny bit of the edge off, at least for me. I know she's having a little bit of special fun before the really awful part happens.

On a completely different subject, our dog jumped up onto BubTar last night and knocked his tooth loose! It was such a weird freak accident. I think he's going to lose it soon, he can't stop wiggling it. He's horrified that it is wiggly, but he just can't stop himself. I'm sad my baby boy is going to lose his first tooth already!

A glimpse of the past

The delete key has been a bit overactive lately. I can't seem to control it. You see, I haven't really been missing, I've been writing posts, leaving them on my screen all day stopping to reread them several times per day, and then eventually hitting the delete key. I think I've been mildly depressed, which is probably why I keep coming up with crap that deserves to be deleted. *lol* So I'm committing this time...this post will survive!

Last week, Josh pulled out the old camcorder (this isn't going where you THINK it's going, you dirty people) and transferred the contents of the tape to the TiVo so we can put it on DVD and he can reuse the tape. The tape was wonderful, it was footage covering BubTar's third Christmas (he was 2 years old) when I was perfectly and plumply pregnant with our dear KayTar, all the way through her birth, up until she was about 8 months old. BubTar was adoarable! He just made me MELT. With his gruff little baby voice and delicious baby fat, I almost cried with joy at seeing my dear baby boy again. He was hilarious...he was obsessed with talking to himself in the viewfinder, we have about 35 shots of the side of his head as he leaned in CLOSE to the viewfinder to talk to the "udder BubTar" (translated to mean "other"). I was shocked I could still understand his garbled BubTar-ese...Josh kept looking at me for translations. It was amazingly cute. Even the way he said KayTar's name was glorious.

KayTar was beautiful, as always, but rewatching this old footage we realized something...all was never quite as it should be with our sweet KayTar. In one video, she spontaneously gagged and threw up (it looked exactly like the shaving cream reaction, it was weird)..the way I reacted made it seem like she did this often. In a segment from when she was about 5-6 months old, she was laying on our bed, not rolling or sitting or crawling, just laying looking at her hands in thay very newborn way. Her cousin was crawling all over her and looking at her and babbling at her, and KayTar just laid still examining her own hands. From the dialogue, I could tell my sister was maybe a little concerned and just joking about it...and I was jokingly defending her...at the time maybe I knew something wasn't quite right, but we just thought she was taking her time, as apposed to our BubTar who was always advanced. It difficult to compare two children, especcially is one is advanced. I think that is why it took us so long to really decide to push for answers with KayTar...for a long time we just thought she was just taking her time, and it seemed "off" to us because BubTar went so fast. Of course, now we realize that wasn't the case. I asked friends from her birth club to post videos of their children at the same ages we had clips of KayTar, just for comparison purposes. The babies were largely sitting up during the period KayTar was still staring at her little hands, and cruising by the time KayTar was very wobbly staying propped in a sitting position for long enough to snap a picture. The videos of last November of the other kids, looks just like KayTar now.

It was a good discovery for us, lately Josh and I have spent quite a bit of time discussing things and one of the topics is whether it has always been this way, or if it happened all of a sudden, now we know...it has always been this way. I think the gap has grown more as time has passed, and it finally became something obvious, something we couldn't overlook anymore. I wonder what might have happened if we discovered all of this earlier, if we had been able to help her earlier what sort of difference it might have made...but I realize that doesn't matter. This is where we are today, and we are doing all we can do for her. There is no reason to look back at what might have been. StupidPedi might have to do some looking back, though...if we ever get a diagnosis, I think Josh is going to force him to do some looking back...the kind of looking back you do when you are being sued for negligence or malpractice. Pediatricians aren't only supposed to keep their patients well; they are supposed to make sure their development (physical and mental) is on track. He let every bit of this slide for over a year, and he also let her fall off the growth chart. He perpetually told us everything was fine....he disregarded all of our concerns. The month after she had her first visit with our new amazingly wonderful pediatrician, he filled out a form that said:
"KayTar has no birth defects/congenital/genetic/metabolic/or developmental abnormalities.
She has no conditions requiring therapies (speech, occupational, physical, or psychological).
She has no conditions requiring a specialist referral or consultation.
She has no conditions requiring a hospital stay, outpatient procedure, or surgery.
She is on no daily medications.
She has no medical conditions or illnesses requiring ongoing follow-ups."

Do you see what I mean about disregarding everything? It worries me that the man is still treating children, and more kiddos like KayTar are falling through the cracks. He might be a good doctor, but he isn't a good pediatrician. Josh doesn't get fired up often...but I don't think he's going to let go of this one.

On a lighter note, here is a picture of my BubTar from the land of yesteryear, all chubbly-bubbly and beautiful:



And one more of my very favorite part of the video, the meeting of BubTar and KayTar:

An affair to remember...

I'm having a secret love affair. With KayTar. Our days are filled with appointments and activity, but the nights are ours.

If you knew us, you would know that we are sticklers for bedtime around here. We can give and take maybe 30 minutes around bedtime, but it is a constant in our lives. We round them up and tuck them in, and enjoy blessed adult television time. Last night I was in the bedroom hanging up laundry, and I heard a sweet little voice on the monitor. She had been in bed for an hour and hadn't fussed at all, she was just babbling to herself, or maybe to her blankey, I'm not sure. I couldn't resist. I told Josh I was going to check on her and when I entered her room she popped up and starting giggling and clapping. That sealed the deal. I scooped her up and danced around the room with her. She snuggled and giggled some more. Josh heard us laughing together and came in as well. He hugged her and talked to her, and then he put his t-shirt on her. She loved it. Since she was up already, we decided to bring her back to the living room. She was being totally adorable. So adorable it made bedtime disappear. She stayed up for about an hour with us, just being adorable and letting us bask in the warmth of her smile.

Yesterday was awful. KayTar napped from 4:30-7:45 in the evening after we came home. Once BubTar went to bed, I snuck KayTar out for a late night Walmart run. We needed batteries, so I used it as an excuse to kidnap her and take her out past her bedtime. She was so silly and wonderful while we were out (although I think she was a bit confused about why it was dark). She asked for Cheetos (point, grunt, sign "eat") so I bought them for her. It felt so rebellious! We were out past bedtime AND buying junk food. I even opened them for her in the checkout line. After the day she had, I would have bought her a pony, I think...so the Cheetos were a reasonable request. She nibbled on the sides of the Cheetos, like tiny corn on the cob. She even swallowed some (although much of it was spit out). She signed to me to ask for more. We had a blast.

Our days are filled with testing and therapy, but our nights are filled with swoony baby love, complete with sloppy baby kisses and belly laughs. We aren't throwing bedtime out the window, I'm sure tonight it will be back to normal...but its nice to know we can throw it out once in a while and fill that time with special time just for us. An hour filled with sloppy baby kisses and belly laughs now and again is better than the best therapy. :)

Here are some photos of our secret evenings together:

Wearing Daddy's shirt and sitting in the block tub


Wearing BubTar's hat


This one just cracks me up...what a face!

Could you make that sweetness go to bed? I don't think so.

Blood work makes me SAD

Today was a big day! We went to the Feeding Disorders Clinic downtown at our usual hot spot, the Children's Hospital. The doctor was amazingly friendly and great with KayTar...she was also quite the talker. I really enjoyed the appointment. She was very informative and even gave me some tips for navigating my insurance and the school system in future years. She gave me some snappy comebacks for therapist who doubt the validity of her issues, because the school system doesn't provide "feeding" therapy. She referred KayTar to a private SLP/OT through the hospital who will do an in-depth evaluation and set up therapy for her. The doctor said our goal is to have her eating normally by Kindergarten. Wow. Even though I know much of this could be long term, I didn't realize it would take so long to get her to eat normally. Kindergarten seems light years away.

On the way home, I suggested to Josh (yes, he came to the appointment, his very first!) that we might want to knock the blood work out today, too, so we stopped at the lab. IT WAS AWFUL. It is always awful. Pulling into the parking lot makes me want to barf. Looking at my sweet smiling baby girl as we walk in the building to her doom, makes me want to barf. Actually waiting in the room for the phlebotomist makes me do a little apprehensive dance. And since Josh was there with me, I did a good bit of repeating "I don't want to do this!" and burying my head in his shoulder. Holding her down while they stick her makes me cry. AWFUL. They stuck her once, and WIGGLED THE NEEDLE AROUND. A LOT. I thought I was going to pass out. I was holding her down while they tortured her. If someone had wiggled that needle in MY arm? They would have left the room with a black eye. But poor KayTar had to take it. So sad. The ladies put the tourniquet on her other arm and started pressing and rubbing, but they gave up before sticking her. They couldn't find a viable vein or get any blood. We have to go to the Children's Hospital on Wednesday to have the pro's take care of it. One bonus? We get instant results. No waiting 2-4 weeks to get answers. But it means I have to hold her down again on Wednesday, and I don't want to do it. At all. Ugh.

Lead Balloon

What is wrong with me people? Seriously, I'm sure you guys come here to listen to me freak out, and I haven't really been filling your needs in my last couple posts. Far be it from me to deprive you, so here goes.

The lead poisoning thing has be FREAKED. Seriously. Our house was built in 1962, pre-lead paint ban. KayTar is never unsupervised, unless she is safely in her crib, so she doesn't have the opportunity to have a nice paint chip smorgasbord. I know she's not eating paint chips…because HELLO! KayTar eating? No. And eating something called a "chip"? Definitely not. If it was paint chip puree in a stage 2 jar, maybe...but otherwise, no. My initial thought was that in all likelihood, it is not lead poisoning. But when I mentioned it to a family member, the least alarmist family member I have, no less, she substantiated it. Wow. Of course I then hop on to Google, because you never find anything but good news on the internet (right?) and start reading. Turns out you can get lead poisoning from all sorts of innocuous things....dust, water from pipes soldered with lead, soil from areas with houses painted with lead paint.

We've lived here for KayTar's entire existence. Conception to this very day have all taken place in this house. Now I think, have we been poisoning her? When I was drinking tap water while pregnant and nursing, was I hurting her? When we made formula with tap water, were we hurting her? Dear Lord, when we boiled her bottles in water were we poisoning her? (Heating water actually causes lead levels to RISE) What about bathing? When we track dirt from outside into the house on our shoes, and she touches the ground and later sucks on her hands, are we poisoning her?!? Do you see how this is going? Now I feel like the house is killing us all, and I have absolutely NO evidence to support that, except the year the house was built. We haven't even done the blood work yet. While we are waiting on the testing and results, I'm wondering if we are harming her by being here, does that even make sense? If the tests come back positive, I'm going to kick myself for staying here...even though, as of right now, there is no actual reason not to stay here. I doubt it is lead poisoning, logically, I doubt it...but in a world of uncontrollable reasons for KayTar's various difficulties, this is the only possibility out there that I feel that could have been controlled. And that fact alone will provide me with endless guilt if it ends up being our diagnosis. Ah, the joys of parenthood. ;)

Successful Sunday

Today has been productive! Amazing! I can't remember the last day I felt productive. I scrubbed the bathroom, I've done several loads of laundry, and this is the best part- I went on a bicycle ride. That's right. I got off my lazy duff and exercised! Isn't that shocking? I was shocked.

It was wonderful. I don't know what possessed me. Maybe it was the fall weather (ha! not where we live). Maybe it was my sad bicycle sitting alone in the garage. Maybe I was that bored. Whatever the reason, I did it. And I enjoyed it. My legs burned, my lungs burned, my brain screamed "Get back to the couch! What are you doing to me?" but as time passed I thought less and less about anything except pumping the pedals and feeling the wind in my hair. Those thirty minutes are the longest time I've kept myself from worrying about KayTar in months. It was just me and my bicycle.

I got home, turned the fan on high, collapsed on the floor in my bedroom and felt like I was going to pass out. I laid there for 20 minutes with nothing at all in my brain. It was wonderful. Then I hopped into the shower. By the time I was out of the shower and dressed again, Josh was almost done cooking dinner for us. I should do this more often.

Home Sweet Home

This weekend was a girl's weekend out. We were going to watch a dance competition, sleep in, eat out, watch movies...all without husbands or children. Well, I didn't go. When it came down to it, I couldn't leave KayTar. She hasn't had an episode in a little over 2 weeks (HOORAY!) but I couldn't escape the worry that she might have one over the weekend. I don't doubt Josh's ability to handle the situation, I think either of us could do it in our sleep at this point, but I couldn't bear the thought of being hours away when she went through something like that. We aren't even sure what is happening during the episodes, they have changed once already, and I worried that if I left, something might change again and make them scarier or more dangerous, and I couldn't leave.

I was lectured for my decision, about how I need me time, about how I have to take care of myself, about how I need time away. Those things are true to a point...but the emotional stress of leaving her right now would far out weight any benefits. If I worry as much as I do when I am in such close proximity to her, imagine how that would increase given a few hundred miles? My head might spontaneously explode when we reached the city limits!

So instead, I have watched endless hours of TiVOed shows and episodes of Law and Order: SVU. This weekend has been the most restful one I've had in a long time. Friday night I was exhausted after our pediatrician visit, but Josh begged me into riding with him to a tool store...he said "Please! I really want to talk...I promise it will be fun." and I said "When did you turn into a woman?" but I went anyway. You know what? I did have fun. We got home and vegged out together, which was also nice. BubTar spent the afternoon and evening with his grandparents, so it was just the two of us and KayTar. Yesterday we left the house once, to pick PupTar up from being spayed...they rest of the day was spent lazing around. It has been glorious. I can't imagine that my trip out of town would have been any more restful than this. :)

Just the facts

We had a whopper of a pediatrician appointment yesterday and I was given so much information that it will be impossible to both provide you with said information and also whine about said information....and because I can't whine to you if you don't have the information...I am providing you with the lovely information in this blog and I'll come back to whine later. Don't worry...you know I'm good for it.

Let's start with GOOD news for a change. KayTar has grown 2.5 inches and gained 3.6 lbs since we switched pediatricians (the end of July). Something tells me that if StupidPedi had been doing his job, she wouldn't have fallen off her growth chart in the first place. She is now almost back on track and we can go down to one PediaSure a day, instead of two. YAY!

Poor baby got 3 shots because StupidPedi let her get behind...and she has to get 4 more in 6 weeks!

She is being referred to an ophthalmologist because certain metabolic diseases show up in the eyes. (after she told me that, she looked at me and said "This is what we start trying when we don't know what else to do.")

The neurologist has requested blood work to test for lead poisoning. The pedi has requested uric acid blood tests. So on Monday we get to go back to get blood drawn and I HATE it. Honestly, I feel like an awful mommy for days after. It’s been the worst test by far...even worse than the EEG.

She asked me about high cholesterol in our families, and so I think maybe after this next round of visits/testing, we may get referred to a cardiologist in case the episodes are being caused by lack of blood flow to the brain.

She told KayTar that she is the biggest mystery she's ever encountered as a doctor. Josh said if they end up discovering some new condition he wants it named after KayTar. *lol* She also said at her child's last PTA meeting, she pulled aside another parent who is a neurologist to quiz him about KayTar. She's really got them stumped!

She said she can't give me a 100% on it not being a tumor, but things are looking good for it NOT to be a tumor. Steady head growth, nothing major on the CT scan, ect. She said we're still waiting on the MRI before we are 100%, but she was able to reassure me some.

After we go back in 6 weeks, she will present her to the chief of pediatrics at the Children's Hospital. She wants all the info she can get before that so she has her bases covered. In 6 weeks we will have been to the Feeding Disorders Clinic, had the MRI, finished all the blood work, seen the ophthalmologist; that coupled with the neuro's information, the CT, and EEG, she should have quite a bit by then. We'll just be lacking the Genetics appointment which isn't until January 2007.

She said KatTar's muscle tone is good, but she still seems to have a lot of muscle weakness, if it wasn't for the loss of words and the episodes she'd think it was a musculoskeletal problem...but throwing in the other stuff, it's not a fit. She said most kids who are behind like KayTar are really floppy, but she has good muscle tone, she just can't seem to coordinate things properly.

Josh has been asking me if she'll ever be able to talk (especially since we're working on sign now he is wondering if this is permanent) and so I asked the pedi for him and she said she can't say. She said she might never talk...but we don't know. She said that will be the hardest thing if they can't find what it is that is going wrong, we'll never know what she's capable of or what to expect for her.

I asked if she will be prone to losing her sign words like she has lost spoken words and she said that it will be interesting to see, because she's unsure because she doesn't know why the words are disappearing.

So we don't know a whole lot still, just more testing and waiting. But the MRI is the Friday after next, and that will be a load off.

And here's a picture of my beautiful girl, just to lighten the mood.

Rapturous Joy

SHE SAID MAMA-


And then she reached for me from her daddy's arms-


And then she hugged me and giggled-


And then my heart grew three sizes, just like the Grinch.


Excuse me while I melt into a puddle of love. :)

Ode to KayTar

Inspired by a couple posts, I decided to talk about all the wonderfulness that is KayTar. I spend so much time writing about the negative, because outside of the blog realm, I don't discuss it; that in the blog realm, I spend little time praising all of the positive that I have been given in my little KayTar.



KayTar is a sweetheart. She is such a little lovebug. She may not care for strangers, but she totally makes up for it with the love she pours out into our little family. Her brother is her best friend, and he loves her just as much. We've never had problems with sibling rivalry between the two of them. In some ways, she is the easiest child. She rarely fusses when we are at home, and if she does, it is only to let us know that she is tired or that she needs some alone time in her crib. At night, we put her in her crib and she goes to sleep. She doesn't night wake, she sleeps in until 9:30 (glorious 9:30!), and she is in no rush to get moving in the mornings. I have been able to enjoy her babyhood so much, I feel like I was given a double portion of sweet baby-goodness. Her brother was ready to be grown up from the time he left the womb. He was three weeks old and standing on my lap. He passed his milestones early; there was scarcely a babyhood to be found. Every new thing KayTar does, we savor because we know it was hard won. We have time to enjoy each new thing she learns because they aren't so piled up on top of one another that it becomes one large lump of accomplishments. This morning she signed "More food." when she wanted her breakfast and we didn't ask or prompt her...she just told her daddy she was ready to eat. It was like a miracle. We took so many things for granted with BubTar, but KayTar has taught us how special each individual accomplishment can be. Nothing comes easy to her, and we are challenged daily to help her become the very best version of herself. We are becoming the best parents we can be because of her. We had almost a full year and a half before she started exploring the house, we would put her in the living room to play and she never wandered off or got into anything she wasn't supposed to. She plays on her own so well and has never needed anyone to entertain her. She is not clingy and she does not whine. She does not have tantrums, and we never have to discipline her. One of friends said it this was, "She is easy in every way she can control; the ways she is difficult she has no control over." and it is so true. In every way that she can help, she is the most wonderful kiddo on the planet. She is both my easiest and my most challenging child. I can't merge the two and say it balances, because it doesn't work that way. But I can say I wouldn't trade our KayTar for anything, and that what we are going through right now is a small price to pay to have someone so wonderful in our lives.

What Not to Say

There is a point when you know your strength might fail you. For me, my brief panic attack reminded me that perhaps I can't do this all on my own. Without you, my dear Internets, I would not have an outlet for the emotional portion of this journey. I feel unable to discuss the feelings attached to the events unfolding in my life with those actually present in my life. If I do have a particularly low moment and reach out for a helping hand, I am always met with a well-meaning response that is of no value to me. People say things like, "God is in control." You all don't know me that well, but I do believe God is in control....but I also know that it doesn't keep crappy things from happening in our lives. Really.Crappy.Things. God being in control doesn't change the fact that something is wrong with my baby, and nobody knows what it is. People are also fond of saying "Everything will be fine." Unless they are human MRI machines (how cool would THAT be?!?), who are also trained on reading the MRI results, then they cannot tell me everything is fine. It feels so patronizing. I think I'd prefer "Suck it up and deal.", because at least it is HONEST. Or "I don't know what to say." Or "I'm thinking of you." Or "I can imagine it is difficult." The point is, they don't have to say anything; I just need them to listen. But the things they choose to say shuts the door on any further communication.

Let me clear something up, I am not walking around with a bleeding heart, shoving it in people's faces. I am talking about people who in the past have been great sources of emotional support for me, and now that I need the support the most, it isn't there. I am not talking about crying in front of people (Lord, no.), I am talking about calling someone very close to me and saying "I'm kind of freaking out here." and being met with what is a well-meaning, but semi-crushing response.

I worry, because I do feel like perhaps the strength is starting to run out. If I am met with crushing news at the end of all of this waiting, I don't know how I will handle it, if all my strength has been used up already.

PS- Thanks for looking at my bleeding heart every time I shove it in your faces, you guys are the best. ;)

Falling Down

I spent part of the weekend putting together a montage of a few short videos I took during KayTar's last episode, complete with text slides labeling the main symptomatic behavior exhibited in each clip. I emailed it to the pediatrician and she emailed me back today. She asked me a lot of questions. It is hard to read emotion in an email, but to me she seemed a bit more worried, or I might have been reading into it, I'm not sure. She said she is going to present KayTar to the chief of pediatrics and the Children's Hospital. She also said that after seeing the video, she is starting to think about other diagnostic possibilities. She didn't mention what those possibilities are or why the video made her decide to present KayTar to the chief...that coupled with the fact that she asked so many questions made me panic. Actually panic, I think. When I read the email, I felt like I was falling down really quickly on the inside. I received it right before I had to pick BubTar up from school. My chest felt tight the whole time I was in the car and when I tried to breathe in deeply, I thought I was going to be sick. Thankfully, the feeling passed.

The chief of pediatrics at a Children's Hospital is what you might call a "big gun", and I am wondering why the video made her decide to pull out the big guns. I wonder what diagnosis she is thinking about now that would prompt such a decision. After seeing the video, does it rule out migralepsy? Does it make another diagnosis clearer? I feel more confused than I was. When I sent the video, I thought "Will she be able to note the change in behavior, since she doesn't see KayTar on a daily basis? Will she even know anything is wrong?" I was worried that the video wasn't going to show her anything that was helpful in diagnosing. Now I am wondering what part of the video sent up red flags? I have been describing these in as much detail as I can for months. Was I describing them wrong? Was there something key that she is seeing that I haven't mentioned? Have I accidentally lead them in a different direction than we should have been going? There are so many questions running through my mind, and I don't have an answer for a single one.

Grins and Giggles

Today I am going to pretend to be normal. I agonized about various KayTar related things all weekend, and I want a vacation from it today. (which means I'm not going to tell you that the tabs open on my Firefox browser say things like "Brain Tumor Society: Patient Resources" or "eMedicine - Migraine Variants") I'm going to create a wonderful post filled with pictures and videos of my sweet little children, and wait until tomorrow (or possibly tonight) before unloading all the worries that are balanced precariously atop my shoulders. So let's get started!

Edit video online at onetruemedia.com

There....that should do it.

Piece

I spoke with the pediatrician today. I love her. She has such a calming effect on me, it is really miraculous in itself. She called the hospital and confirmed it was their mistake and that we are going to have to live with it. She said they are AWFUL at making up for their errors, but great at what they do. KayTar has a clean (which in itself was disputed) CT scan, which makes her ineligible for a rushed MRI. They don't see it as urgent. I asked her to call and see if they could give me a spot next week and bump someone up to my old appointment (a non-barfer). She is checking on that as well as calling a doctor friend of hers who has opened up a private MRI practice. He does accept pediatric cases, but she is unsure whether they have the ability to sedate. If they can sedate, she can get an appointment there next week. So all hope is not lost.

I explained that the main symptom KayTar exhibited on her Wednesday episode was drunkenness, and asked what part of the brain that would happen in and if that gives us any new clues. She said the cerebellum controls that type of thing, and it is actually fitting with a basilar migraine, which fits in with the whole migralepsy diagnosis. This makes us BOTH feel good, because we haven't quite been comfortable with the neurologist's diagnosis and the fact he has his mind made up. I looked up basilar migraines and it pointed to information on transient ischemic attacks . The symptoms for transient ischemic attacks are eerily similar to what happens to our dear KayTar, right down to the dizziness and head tilting and weakness in one side of the body. This scares me, because these are called mini-strokes and are caused by blood being cut off in part of the brain. They can signal a real stroke is coming. When I first found this information I was so excited. It was like "Yay! We're not all crazy, and we're actually on the right track.", but now I'm back to worrying. She is so young and vulnerable. We've let these things run their course every time, what if that was wrong? What if it is damaging her brain because of the lack of oxygen? Honestly, we couldn't get to the hospital and into a room before they are finished, they usually aren't more than an hour and the hospital is 30 minutes away and the ER takes forever...but I can't help but wonder. The thought of a diagnosis out there makes me happy, it does. She is just so young to be going through this...it makes me sad. What if we have been making the wrong decisions for her? What if this will permanently affect her? I feel so lost in all of this. I feel like our hopes of getting an answer have been lifted and dashed repeatedly. I feel weary and worried. I want to know what is wrong so badly, but I am a little afraid of the answers as well. If this is a piece of the puzzle, it is wonderful. We can start making informed decision from here on out. If this is the right piece, the meds WILL start helping. If this is the right piece, it can explain so much. If this is the right piece, maybe we can finally have some peace.

No MRI?!

I started this post earlier, but I was a wreck and decided not to subject you all to the ravings of my overly emotional self.

Today was supposed to be my day off. My carefree-clean-the-house-do-laundry-forget about-all-the-KayTar-drama-for-24-hours-day. Well, I'll spare you the suspense: IT WASN'T.

Last night KayTar had another episode. It has been LESS than the usual two weeks. They are getting closer together. I dreamt about hospitals and ER's and CT scans and MRI's. This morning I woke up and stumbled to the coffee pot turned it on, then I realized the kids were both awake. BubTar was watching Playhouse Disney and had put Blue's Clues on his computer in KayTar's room for her. Usually I sit at my computer and drink my coffee while reading a few blogs, and I enjoy the blissful quiet. Not so much today. Almost directly after finishing my coffee, the phone rang it was the Children's Hospital on caller ID so I assumed it was the Feeding Clinic. YAY! But it wasn't. It was the MRI schedulers. There was no YAY. The lady on the phone informed me that my daughter is not eligible for a Saturday MRI because she has a history of vomiting (because of the episodes). They do not have an anesthesiologist on staff on Saturday (nurses only) and they can't sedate someone with a history of vomiting. Dandy. They pushed my MRI back a MONTH. I have to wait another MONTH, and my child is getting worse, not better. How can they do this? The only thing that has gotten me through the past month was looking forward to that MRI. Its been my freaking mantra "Just wait until the 23rd. You'll know on the 23rd." and I don't think I can do that for another month.

So I called the pediatrician's office, and immediately started crying (you don't know me that well, but I hate crying). My pediatrician was out of the office today (of all days) and I told them my story and they transferred me to referrals. The nice lady said to try another hospital for a quicker appointment (I told her to hold on about 3 times in the course of our short conversation to choke back tears and suck it up a bit). I called said-hospital and talked to a nice man for about 20 minutes regarding scheduling, then he took my insurance information and said "Oh...hold on." When he came back he said "You can only come to our hospital if Children's Hospital does not have the ability to DO a procedure, even if you have to wait for it." DANDY! So my hands are tied and my baby is getting worse. When my pediatrician gets in tomorrow, I will call and see if she can do anything, or if she thinks the neuro can push to get it sooner. I'd take a hospitalization if it meant we could get this MRI done. What if it is a tumor? It seems to be progressive, whatever it is, and the longer we wait the scarier it is. Yesterday the therapist said her head measures too small for her body, but she was satisfied when I said that we had an MRI on Saturday. We think she might have lost her third set of words...we haven't heard "sit" or "go" in weeks. She is down to zero words...but she has learned 1 word in sign. (yay!) I just kept saying "Don't freak out...wait for the MRI..." but now I don't have that and things are piling up in my mind. I'm swinging at the end of my rope here and it's killing me just to wait until tomorrow to talk to the pediatrician....I don't think I'll make it through another month of waiting.

Killer week!

I woke up this morning and realized this week is going to kill me. I can already feel it in my bones, and that's never a good start. Today in itself is a headache, because I have a parent/teacher meeting (which I already rescheduled once) at 3:00 which is also pick up time for BubTar. I ran through all of my various options all morning, agonizing about rescheduling or asking for more help from my already overtasked family and finally found a solution. I am picking him up early enough to drop him at his aunt's so I can run back to the school to have the meeting (it's 15 minutes both way *sigh* it could be farther, though). Luckily KayTar took her nap, so she will be nice and perky the afternoon instead of cranky and tired.

Tomorrow we have her regular DT appointment at 1pm, and at 2pm she has her PT evaluation. Someone will have to fetch BubTar for me because I won't be able to leave the house until 3 or later and he is released at 2:45. We also have a PIA meeting tomorrow night (its our school's PTA type thing).

Wednesday at 10am she has her nutrition evaluation, which means I can't drop him off for school because I will be here with KayTar.

Thursday is FREE! FREE!! YAY! I can clean my house and do laundry.

Friday KayTar had a well-baby visit to finish up her shots, but I rescheduled it because of our plans on Saturday.

Saturday=MRI DAY!!! Yay! This is better than a free day, honestly. We're all just dying to see the results. Her doctors' faces light up when we mention it. They are chomping at the bit, as are we. It feels like Christmas. Everyone is hoping to see SOMETHING that will give us a clue. The main point of interest is her language center, because she has lost those 2 sets of words and there is such a wide gap between receptive and spoken language levels. The biggest worry is it coming back totally clean...because then we're still every bit as lost. But at least it is here...we'll have it out of the way on Saturday. *sigh* I cannot wait.

Somewhere in there I am supposed to hear back from the feeding clinic to get our appointment scheduled. Well, I'm off to fetch the BubTar from school so I can scurry back to the meeting!

I'm sorry I cut them off.

That is something you NEVER want to hear from a 4 year old. Luckily, he only cut off his eyelashes on one eye. I didn't know what he had done, so I said "What did you cut off?" And he said "My eye Fings." He was very sorry. Evidently those little manicure scissors just scream to be use for giving your eyelashes a trim. He has, erm, HAD the most gorgeous eyelashes! He was so very embarrassed that he cried when it was time to go to the in-laws for dinner. "I don't want them to SEE me!! No, let's just stay here as a family." as he sobbed into my t-shirt. We told him we already made plans, and he had to live with the consequences of cutting off his lashes. We also told him nobody would notice but he splayed himself onto the couch and sobbed, "I don't want ANYONE to see me until they grow back!" So Josh said "Why don't you just wear your eye patch, buddy?" He popped up of the couch and said "Heeeeeey, that's a GREAT idea." so he wore his eye patch the rest of the night. In the car on the way he said "I hope nobody asks me about my eye patch." so when we got there and ran in telling everyone to ignore it. His grandma wanted to get him to show her so she could tell him it was no big deal, but when she asked why he was wearing it he shied away and said "I don't know. I don't want to take it off." It was really hilarious. He was so self-conscious all night, until he snuck into the kitchen when Josh was the only one in there and asked him how it looked and Josh said "Yeah, they're growing back in, just a few more days." (LIE!) And then BubTar got a boost of confidence and yelled "HEY EVERYBODY! EVERYBODY! I CUT OFF MY EYE FINGS, BUT MY DADDY SAID THEY GROWED BACK!" and he ran around showing everyone, who all said things like "You can hardly notice!" "I can't even tell!" So he was able to leave the eye patch at home today, thankfully. This morning he started asking about shaving...I think we need to keep our bathroom door locked from now on. :P

1 step forward, 3 steps back

I spent the better part of today preparing for the neurologist visit. I had to get BubTar ready for school and drop him off, which took up most of the morning...but once that was over I focused solely on preparations for the appointment. I put Katie down early, so she could get her nap and be perky for the doctor. She did not WANT to nap. I heard her babbling and laughing and rolling around in her crib almost the entire time I was getting ready. I gathered all the paperwork. I packed the mother of all diaper bags, with enough entertainment to get through a 6 hours plane ride. I had blocks, nesting cups, coloring books, a magnadoodle, Goodnight Moon, flashcards, and the iPod with 2 episodes of Blue's Clues and 1 episode of the Little Einsteins. There was no way she'd be fussy while we waited. I printed maps and put them ih the front seat of the car. I put the diaper bag in the car. Everything was ready but KayTar. So I watched the clock and at the exact right moment I went in to get her. She was asleep. Finally. And she had pooped. So, instead of seamlessly transferring her from her crib to the car, I had to change her diaper and wake her up completely.

We arrive at the neurology clinic and all I had to do was sign in. We went over by the pretend fish tanks and KayTar was happy as a clam. When our restaurant style pager went off (3 minutes later), she was very disappointed to leave her new fishie friends. Luckily she was distracted by the blinking lights on our pager.



The appointment itself was kind of unnecessary. I think we could have just as easily done it all by phone. He had his mind made up before we even came in. He said the meds can take up to 2 months to work, so we will probably see more episodes. He still believes it is migralepsy. He only asked me a few questions, and examined KayTar for a few minutes. It wasn't all a loss, though. He is referring her to a developmental psychologist. Evidently she is GOOD. She doesn't see patients on a regular basis, she mainly does research, but he said he's calling in a favor for KayTar. We are being referred to a Feeding Clinic as well. She will see a gastroenterologist, occupational therapist, speech language pathologist, and a dietitian there. He said EI does very basic evaluations and we need something more conclusive with KayTar. So now we're playing with the big dogs, I suppose. We also have another neuro appointment in December. And he told me to keep the genetics appointment in January.

I feel like everyone has these suspicions about what is going on with KayTar, but no one is telling me. Everyone feels there is more to the puzzle, but they aren't telling me what they suspect. Nobody is looking at our diagnoses and saying "That explains EVERYTHING! Good work." They are saying "KayTar needs to see this additional specialist." or "Let's try this." It is maddening in a way. Sometimes I look at her and think, is all of this necessary? Is someone just going to tell us one of these days, "Oh sorry about all of that, she's totally normal." but I don't honestly think that day is coming. I think the day when someone finally tells us something it might be quite different than that.

Oh, and we never opened the glorious diaper bag. So much for being prepared.