Monday, October 30, 2006

The fear creeps in

After I speak with the pediatrician, it takes me a few days to fully digest the information. I lay awake at night and replay the conversation in my head. I always remember the major things immediately; but less critical things, like the names of certain possible diseases or things to research, they come to me later. Yesterday I had an "A-HA!" moment. I remembered the pediatrician named some disease or condition that involved the term "leuko" when she was talking about demyelination, so I typed "leuko demyelination" into Google and came up with the answer. Leukodystrophy . This scares me. From what I have read, there is no cure for these types of disorders. They are progressive, and they end in...God, I can't even say what they end in. They end in my biggest fear. The fear that whispers in my ear. The fear I try to practice facing in my mind, but can't. The fear that makes me sick to my stomach to dwell on. I can't tell you what that fear is, because I can't bring myself to say it aloud, but you know what it is. Saying it aloud gives it validity and I cannot do that. This is as far as I go with it, and then I will tuck the fear away again. These disorders are just one of the possibilites that the doctors are looking into, there is no need to be fearful yet...but still it creeps in.

Sunday, October 29, 2006

Help me!

I know I have some hospital-veteran readers, at least on occassion, and we are about to gear up for a hospital stay here in the near future. This is the calm before the storm, so to speak. Josh goes back to work tomorrow, and we start with this week's round of appointments, which might end with her hospitalization...if not, it will be the following week. I'm trying to get prepared. And so, I look to you for help in my preparations...even if you aren't a hospital-vet, you input is much appreciated.

What do I need to take care of here at home before we go?

Is there anything I need to do in advance in anticipation of my not being here?

What should I pack and bring with us?

How do you entertain a 20 month old in the hospital for a long period of time, especially when they are running batteries of not-so-enjoyable tests?

Does this sound like a workable scenario?
I will have my mom watch Nathan during the day while Josh works, take him to and from school, and Josh will pick him up when he is off of work, they can come visit at the hospital, and then the two of them will go home. I'm just planning on being there for the duration.

Is there anything I need to know?

Thanks in advance!

Thursday, October 26, 2006

The Sweetest Thing

Well, one of the sweetest things at least. :) Today during naptime KayTar was having a hard time sleeping, but she wasn't quite ready to be awake, so I put her in bed with me. This is a rare event, because the girl likes her own space while sleeping. She ended up falling asleep again and I just laid beside her and watched her dreaming. A few minutes later, she started signing in her sleep! I know some people talk in their sleep, but I had never thought about those who speak sign language signing in their sleep. It was incredibly adorable. She was so sweet, all rosey cheeked in dreamland, signing about apples and cheese. :)

Just so you feel the full effect of her adorable-ness, I'll let you experience a waking version. :) Enjoy!

Why I love this vacation

We leave our room a mess and when we get back, it is clean!

We go eat Ben and Jerry's almost daily...and it is here in the hotel, no leaving required!

We can go buy chocolates at Godiva whenever the mood strikes.

We eat out for every meal.

People will deliver said-food to our room.

All food, chocolate, and ice cream is being paid for by someone makes it taste so much sweeter. :)

We have no obligations, no doctors to visit, no therapy sessions, no schlepping children to and from school.

We don't have to do laundry or dishes or grocery shop.

I took a bath...a real, mostly quiet, mostly uninterrupted, relaxing bath! (of course BubTar was shooting at me with Zurg's blaster under the bathroom door, but who cares *lol*)

We have mandatory nap time...yes, I get to take a nap as well. :)

Josh and I lay in bed together at night and watch mindless crap on television.

We went to Disney World!!


Tuesday, October 24, 2006

Split Personalities

I've received a few compliments on how well I'm handling our news. That is true to a point. I feel like I am two people. One Kyla is huddled in the corner rocking herself back and forth and the other one is telling her to shut the heck up because there is no time for that sort of behavior. She's the one in charge at the moment. I don't have time to mourn what might have been, or become paralyzed in fear over what might be. My job is to take care of Katie, to be strong enough to see her through this, to keep my family functioning like it should. My job is to make sure we have a nice vacation, because this might be the last one for a long while. As I write this, the scaredy cat in the corner says "It might be the last one with Katie." but this is why she isn't allowed to talk.

I don't know what these lesions mean, I don't know why they are there or how we are going to have to handle them. Some people (not doctors) are mentioning brain surgery, which makes the scaredy cat start climbing the walls. "The thought of someone opening up my baby's brain is too much." is what she says as she rocks herself. The doctors haven't given me projected courses of action, and now is not the time to worry about those possibilities...there is no room for needless worying. I know at some point, things will be too much and emotions will come out, but for as long as I can maintain, I have to try. I don't want anyone thinking I am cold towards what is happening, but I just can't allow myself to lower the walls right now. We are at a pivotal point and we all need to stay strong...I have a feeling there is a long road ahead of us.

Monday, October 23, 2006

The results are in...sort of...

After I wrote my post last night, the pediatrician returned my call. She apologized and said she goes out of state twice a year and leaves her pager, and yesterday was one of those days. She said I can have her paged any time, even if she isn't the on call doctor. She is amazing, in case I haven't explained that to you all lately. Amazing. If there are pediatrician of the year awards, I need to nominate her, because WOW. She is wonderful. She said she would call and get the MRI results first thing in the morning and call me. We were walking around the hotel (which isn't a hotel as much as a built in zoo/theme park) when she called. I ran back into the lobby so I could hear, because the waterfall was a tad noisy.

The MRI wasn't clean. She has lesions on 3 of her lobes; both parietal lobes, and her frontal lobe. This explains the speech problems and motor function difficulties. What is unclear is what the lesions are and what is causing/has caused them. She mentioned metabolic diseases, in-utero infection such as CMV, and even stroke. She said there were no calcifications on the CT scan so stroke is unlikely, but not impossible. She couldn't get in touch with our current neuro, but she did contact a friend of hers who is a neurologist in the same clinic. She has been discussing KayTar with him for a while now, and she is referring us to him when we return. She and I both feel like the current neurologist dismisses our concerns and already has his mind made up. She said that when she calls him she has to get everything out in one breath because as soon as she takes a breath he says "Oh, Dr. I think everything will be okay." When I saw him in the clinic I felt like it was a totally wasted appointment because he already had his mind made up. The pediatrician said that she trusts the new neurologist and thinks it is a good idea to get more eyes in there. He will take good care of KayTar because he is friends with her pediatrician.

When we return home, KayTar sees the opthomologist on Monday, and then later in the week we will see new neurologist. After he examines her, she will be admitted to the hospital for testing. They will be doing more blood work, clotting tests, an extended EEG (24 hours), an MRA to look at her arteries/veins in the brain, and whatever else strikes their fancy.

I am thankful the MRI came back showing us something, even though it felt like a punch in the gut. If it was clear, we would be lost, treading water, no place to go. Since it isn't we have a direction, things to look into, tests to narrow things down. I am thankful for this week, the break from everything, because when we come back it starts up in full force. I am thankful for our pediatrician and her genuine concern for us and KayTar. I'm thankful that we aren't quite as lost as we were yesterday.

Sunday, October 22, 2006

Panic in the Garage

We spent the morning packing and preparing for our big trip. We got out the door in plenty of time and everything was going swimmingly until we arrived in the parking garage at the airport. KayTar started sqwaking from the backseat, which is pretty odd for her. When Josh took her out of the car, we both knew something was wrong. Her eyes were rolling around in her head, her head was tilted, and she wasn't aware of anything. I can't explain this moment to you. We both (even Josh the rock) panicked. We are about to unpack the car to get on a shuttle to go to the airport to get on a plane for a 2 hour flight. And yet here is our baby having a seizure, or whatever it is. This is a key moment. We freeze. Josh says "I guess we aren't going." For some reason, maybe because this "vacation" is actually in part, a conference for Josh's job, maybe because I couldn't stand the thought of losing this vacation when we were so close to getting away- I was the one to calm him down and take charge....this never happens. Never. I grabbed his blackberry and called the pediatrician. Of course it is Sunday, so I get the answering service, who pages the nurse, who informs me that my doctor is not on call this weekend. She offered to page Dr. OnCall, but we declined. We've done that the time we are done explaining months of testing to Dr. OnCall, crisis has been averted...or he has something helpful to say like "Gosh, I don't know." I beg the nurse to page our doctor, she does, but explains she probably won't answer. She didn't answer. But while we were waiting on the call, we decided to proceed....hoping it would pass and life would go on, like it tends to do, while simultaneously hoping for the pediatrician to answer our call. Neither really happened, but because we were so far into the process of going, we just stayed the course.

This was a weird episode (like any of this is "normal"). She came in and out of it several distinct times. It was still similar though...eye rolling, head tilting, altered state of awareness. This time there was no pain, but she didn't seem to have the total drunken baby thing going either. I think today was the most "typical" seizure behavior we've seen...but it is all so closely related. Variations of the same. They were close together and very pronounced for about an hour, and then tapered off...but she wasn't back to herself until she woke up after the plane landed, roughly 3 hours after it all began. Its like her brain forgets how to function until she falls asleep and "reboots".

So tomorrow I will be calling the pediatrician, to let her know, and I suppose I'll get those pesky MRI results while I'm at it. Who are we kidding, I'm not strong enough to call and NOT ask about the results.

On a slightly different note, I changed my voicemail message to the following before leaving: "This is the Tar residence. We are currently out of town. If you are a doctor or doctor's office calling in reference to KayTar, please call me on my cell phone at XXX-XXX-XXXX. Thank you." How weird is my life?

Saturday, October 21, 2006

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 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.

Friday, October 20, 2006


"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.

Wednesday, October 18, 2006

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!

Tuesday, October 17, 2006

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 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 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:

Tuesday, October 10, 2006

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 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.

Monday, October 09, 2006

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.

Sunday, October 08, 2006

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. :)

Saturday, October 07, 2006

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 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.

Monday, October 02, 2006

Rapturous Joy


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.