Lockdown

With his initial (greatly regretted) toothfairy transaction, BubTar bought a new to us XBOX game. I know video games and children are a hot topic, but this isn't what the post is about. Josh is a gamer; BubTar likes to play in tandem when he can, so we keep child-friendly games around. We are very picky about what he is allowed to play, though. This game is still just a bit too hard for him, if we are being honest, it is a little too hard for ME, because he has matched my sad video gaming prowess. If he needs help when playing, chances are greater that I will use up his extra lives while assisting, rather than make any sort of progress.

This has been a great source of emotional turmoil as of late, resulting in a total grounding from all gaming systems due to the emotional overload it is creating. I will give you an example:

B: (screaming) I can't DO IT! IT'S TOO HARD!

M: Why don't you turn it off and come back and try again later when you don't feel so upset?

B: No! I don't want to turn it off. I want to do it! It isn't about winning, its about PRACTICING.

M: Well, then you need to get yourself under control, because you can't play if you continue to scream and cry. It isn't worth getting so upset.

B: I'm so upset because I'm LOSING!

M: I know losing upsets you. If you need help, you can turn it off until Dad gets home and he'll help you.

B: I want to do it now. (crying now)

M: If you want to keep playing, you need to control yourself. I can try and help you, but you are getting too upset and it is supposed to be fun. If you aren't having fun, you need to save it and turn it off.

B: (screaming and crying) I can't control myself! I'm SAAAAAAAAD!

M: Either you turn it off, or I do. It is time to turn it off if you feel this sad.

B: (sobbing) I'm not sad anymore.

M: You're still crying, buddy.

B: I just can't stop it.

M: Well, then we're turning it off and you can try again with Dad later.

B: (sprawls himself on the floor, crying hysterically)

M: You know you aren't supposed to act like that. You need to calm down and go do something else.

B: (crying on the floor)

M: If you can't calm down, this is the end of playing for the whole day. It isn't good for you to get this upset over it.

B: (crying louder)

M: This is your last warning, Bub.

B: (screams)

M: Okay, no more today. You need to go up to your room and working on calming down.

Yesterday, this happened again, although he turned it off himself and went to cry quietly in his room. He came out of his room and said:

B: You know, I am sad and crying.

M: I know, but you still can't play. It isn't good for you to get so upset while playing. That is when it stops being fun. Does Daddy cry when he has a hard time with a game?

B: YOU KNOW I AM NOT DADDY. WE ARE NOT THE SAME! (total breakdown)

I almost died. All I could manage at that point was an "Oh baby, come here." and I let him cry in my lap. It was just such a grown up thing to say. The way he said it, I don't know. I saw him standing there at sixteen, having the same discussion with me. "I am not Daddy." Ack. I saw myself, crying in bed, telling my dad, "But I'm not like them, we're not the same." It made tears well up in my eyes. Once he was done crying, I explained that I wasn't trying to say he was like Josh or that he needed to be like Josh, I was just trying to show him that when you are ready to play video games on your own, you are also able to control your emotions. We know to walk away when we start getting too frustrated. He needs to start thinking about how he feels and walk away when he starts to feel like it is too much. He can always come back or get help later. If he can't stop playing when he feels too frustrated, then I'll have to step in and remind him...but we want him to learn to read his feelings and know when the frustration level is too much. This isn't only applicable to a video game, but extends to all areas. He has that perfectionist streak and it causes these type of scenes over and over, the only difference is the issue he is struggling with.

He felt better, I felt better. Josh got home and helped him with his trouble spot and life went on. But I was left with this sudden shell-shocked awareness that he has an entire internal monologue that I don't know about, all sorts of important to him ideas and feelings that I am only privy to when he decides to share and that thought is kind of mind-blowing for me.

****

B: What is lockdown?

M: What?

B: LOCK DOWN. What is it?

M: Uhhhh.

B: We practiced it at school today and it is call LOCKDOWN.

M: You practiced lockdown?

B: Yes.

M: You tell me what it is.

B: Well, we have to close the door and the windows and go sit on the carpet and be SO quiet. What is it? Why do we have to practice?

M: (thinking, how do I explain lockdown without bringing up terrorists and students with handguns?) Lockdown is when there is a school emergency and the teacher needs you to be SO quiet and do your very best listening.

B: What do I do if there is lockdown and I am in the bathroom?

M: Uhhh...

B: I know! I stay IN THE BATHROOM QUIETLY. But if it is a FIRE DRILL, then I go outside with a Big Kid.

M: Yeah, that sounds right.

B: And what if we are in the hallway? Where do we go?

M: Do you know?

B: Inside the classroom we are next to.

M: It is very good that you know all this.

B: Yes.

M: (having a panic attack)

Holy crap. My five year old is learning lockdown procedures. He goes to a small, private school in our area. It is easy to forget that I really am sending him off into the world every day when it just feels like an extension of home. But I am sending him off into the world...a world of lockdown drills, of having to know how to handle himself in very real emergencies. A world that I don't know that his five year old self can handle yet.

Wordless Wednesday: Birth

On pediatricians.

During last week's re-evaluation, our caseworker said, "And who is Dr. Ex-Pediatrician?" and I audibly groaned. Everyone in the room laughed and there was a chorus of "Oooh, that bad, eh?" and the like. I explained, "He is our original pediatrician, the one who kept assuring us things were just fine." And the caseworker said, "Let's just get him out of her file, okay?" And so we did. It has been long enough that he no longer has any necessary information on KayTar, although he still has not released her full file to either ECI or our current pediatrician. That conversation, coupled with Lisa's recent exposition on the less-than-professional medical professionals she has encountered, reminded me of something I've intended to write for a very long time.

Last June, we saw our current pediatrician for the first time. She immediately told us:

KayTar needed an ECI evaluation, for significant delays.
KayTar needed a neurological work-up, including an MRI.
KayTar needed medication for her chronic constipation.
KayTar needed to see a specialist for her feeding issues.
And we needed to get her on health insurance before we started all of this.

This was after being the room with KayTar for possibly 15 minutes, that is how obvious these issues were. KayTar was such a sickly infant, that we never went more than two weeks without a visit to the old pediatrician. He saw her plenty, and always assured us things were fine. He just wasn't looking at her.

To get KayTar on insurance, we had to have our pediatrician fill out a form. Since ex-pediatrician had her records, he was the one to fill the form out.

(click to make larger)

I only edited to remove identifying information and add in the pseudonym. I left the signature, because it can't be identified in any way. The letter it resembles isn't even in his name.

There were six questions, and he answered every single one of them incorrectly.

She does have genetic, congential, and developmental abnormalities. Not just one, but all three from what we gather.

She is in therapy four times per week; developmental, occupational, physical, and speech.

She has seen eight specialists; neurology, genetics, gastroenterology, developmental psychiatry, ENT, feeding disorders, ophthalmology, and audiology.

She has had multiple outpatient procedures; two MRIs, two CT scans, and two outpatient EEGs. As well as a hospital stay for a diagnostic procedure.

She takes Miralax daily, but in the past year she has been on two additional daily medications, in conjunction with the medications she takes during an episode.

And after reading the previous five explanations, six kind of takes care of itself, doesn't it? Clearly she has medical conditions that require ongoing follow ups. At the time he signed this, he had also allowed her to fall so far off the growth curve that it took us a very long time to fix it.

Sigh. It is over now, and had been for so long, but it still irks me that he blatantly overlooked everything about her. I asked him on multiple occasions about her development, her weight, her constipation. We were assured it wasn't a problem. How could he miss for seventeen months what it took our current doctor fifteen minutes to see?

She had her first episode when we were seeing him. I rushed her to his office and he said, "Maybe it is meningitis." He took blood work to test her white cell count (no LP, even though HE SUGGESTED MENINGITIS) and sent us home. He promised to rush it and have it back by the next day. When I called the office in a panic the next day, the nurse told me, "That takes a week to get back. Sorry." I called several times that day, and even left him and voice message. Eventually he called me back, clearly never having heard my message. It wasn't meningitis, of course, but in that moment I didn't know that. It boggles my mind how something that could have been so serious was handled. Regardless, there was absolutely no follow up done. He never even attempted to explain what had happened to her. It wasn't meningitis and that was all there was to know.

Evening of the first episode.

In the first six months of seeing the new pediatrician, I must have thanked her a thousand times and that was exercising self-restraint. I sent a few small gifts, too. I just could not contain the gratefulness I had for her. It was always met with, "Really, I'm just doing my job." but I don't know if she really realizes how rare it is to find a pediatrician who does the job with such dedication and skill. She changed our lives, KayTar's life especially. She is where she is today, because of our current pediatrician. Without her, I hate to think where we'd be. Sure, we still don't have answers to many of our questions, but it isn't for lack of trying. I could not dream up someone who could do a better job of managing KayTar's care and helping us through all this. We really hit the jackpot in finding her.

We were referred by a friend (whose blog I would link you to if it weren't private, Hi Amy!) and I almost didn't give it a shot. The office is almost an hour from our house, and there are plenty of pediatricians within a ten mile radius. But Amy's daughter had been fairly ill her first year, too, and I thought if the pediatrician could keep up with her, she could keep up with KayTar, too. I didn't expect much. I wrote a list of all of my concerns and printed it up. I brought records of KayTar's intake. I documented everything. I was ready to push for answers, but I never had to. She met KayTar and took notice, without much assistance from me at all. She saw everything, without me making mention of it. It was a huge day for us. A turning point. At the time I felt relieved and horrified all at once. I knew things weren't right, but the extent of it, I had no idea. It was the day my life changed for what might have been seen as for the worse, but in reality it was better than we ever could have hoped. The progress we've seen is miraculous, and I don't doubt for a second that we owe a great deal of it to our current pediatrician. And I still cannot thank her enough.

Plus, she's taught KayTar some mad medical skillz. ;)

Much better, indeed.

She did well last night, only waking once after I posted. She vomited again, but we were able to soothe her back to sleep. She slept right on through until 9 this morning. She's had a good morning, slightly more demanding that typical, and a bit more lazy, but that is to be expected. She has grabbed her forehead on a few occasions and say, "Eyes hurt." They've been dancing of their own accord still, but nothing else is happening, thankfully.

This morning she called out, "Mama!" and I went in her room to check her. She said, "A bah-wul (bottle) a-milk? Lay down a-pillow. OKAY!" Which roughly translated means, "Please fetch me a milk bottle while I lay here on this pillow." I did, of course, and she then told me, "Go sleep. Close door. Goo-night." Which translates to "Get out, I'm going back to sleep now."

She ate yogurt this morning, although she wouldn't go for any table food, sadly. She's been drinking well and all in all everything is just fine. The episode passed without too much fanfare and I'm feeling lucky today because of it. She's had ragers in the past, so when they don't hurt much, it makes me feel better. It is still stressful and sad and I never feel relief until we are sure it is over, but it is easier when it doesn't put her in unbearable pain. Yesterday most of her discomfort seemed to stem from the eye movements and nausea rather than any real pain. Whatever the case, we're just glad it is done.

KayTar performing an interpretive dance entitled, "Pain, Pain, Go Away."

In retrospect, I realized I double-jinxed us all. On Saturday, I openly discussed the recent lack of episodes. Then Sunday, I took down the blankets we had put up in KayTar's bedroom windows to darken it, because I was tired of seeing them there. I may or may not have said, "She hasn't had one in ages, why are we leaving these things up?" Ack, ack, ack. Roughly 6 hours later, BAM. "Here is the episode you requested." I'll learn one of these days.

On a BubTar note, he received an award at school today! Every day, the teacher gives out an award, different awards on different days, I think. Last week he received "I Did My Best Today!" which was nice after having a day last week where he was in a spot of trouble. Tpday, he received "Quiet as a Mouse!" which we had given up hope on. He just isn't a quiet kiddo and we were perfectly happy that he was doing his best, whether it qualified as being quiet as a mouse or not. But then today he surprised us! What a good boy, he is. He especially likes that the whole class claps for him when he gets an award. Kindergarten is a hit so far! You know, except all the germs. I had a meeting with his teacher last week and she just bragged on him. He's doing great academically, and he's really only been in trouble the one time, so far. His favorite thing about Kinder is the science experiments they do each Friday. On Community Helpers day, he told her that he wants to be a babysitter, because he is SO good with helping with his sister. And he's right, he is an excellent helper. His teacher told me "He just has the sweetest little heart, I'm enjoying him so much in class." She also mentioned he's having a bit of trouble paying attention, although it isn't affecting his learning. We've always known he can be a bit of a space cadet from time to time; he comes by it honestly, Josh can be one, too. She said she would watch it closely to be sure he doesn't start to miss things in class, but Kindergarten is definitely off to a good start and we are so proud of our big guy.

Quiet is evidently his super SECRET power, the one he can't use in front of others. ;)

It was a good run...

69 days, no episode. Until today.

I had stopped thinking about it, stopped wondering every day, "Is this the day?" I even felt far enough removed from it that yesterday I discussed how long it had been. I didn't even know how many days exactly, because I had stopped counting. We used to live by the calendar. Every 15 days we knew what would soon be happening. A long break is deceiving, it tricks you into thinking it might all be over. I know all about the medical jinx, but my hope just got away from me.

She's had pretty concentrated eye deviations for the past 5 days, but we don't even know what those are. We're still waiting on the EEG results from a month ago.

Tonight, we went to eat dinner with Josh's family. KayTar was having a blast running around (well, her version of running) with BubTar and Josh's littlest sister. She was being social and silly and fun, all the things she should be. Then she walked into the living room, her eyes darted up and over, like that have done so many times this week, and she slowly fell to her knees. She laid her head on the carpet, bending as though she might be in prayer. She stayed there for a moment and then she stood up and drunkenly staggered to me. Her limbs were uncoordinated and her gait was choppy and much wider than normal. She collapsed into my arms and squeezed me, nuzzling her head into my shoulder. She held on for dear life for another minute or two and then got down. She sat on the floor and played with a toy, but soon slumped over and wanted to be held.

"Do you need me to hold you?"

"Hold you?" Her drunken eyes flitted up toward my face and she tried to raise her arms.

I held her and she burrowed in once more. She broke out in a sweat, her whole head suddenly damp, and her eyes started rolling. She was having difficulty opening them and keeping them open. She was incoherent. She started to gag and whimper, she couldn't lift her head. My in-laws packed up dinner for us and we left. KayTar cried and vomited on the way home. She asked for a napkin for her face, poor dear.

We gave her medicine when we got home, and after emptying her stomach, she fell asleep. She is resting here in the dark beside me right now. I just hope she can sleep through.

Earlier today, eating dry cereal for the first time.

This Kid...

Ate 1/2 of a breakfast sausage, along with a stage 3 oatmeal and fruit jar for breakfast;

Ate 3/4 of a cut up hotdog for lunch that she fed to herself, using a fork;

Stuck her hand right into cake frosting;

Didn't throw up once today.

And the parents rejoiced.

[I know she's had these little leaps before and they haven't stuck, but it is so exciting for us, regardless. We do think one of these days (maybe today!) it will start to stick and the more days she is willing to attempt it, the better. You know the old saying, "Practice makes for reduced oral sensitivities." Wait, maybe that isn't the old saying, but it does have a nice ring to it, doesn't it?]

Edited to add:

This morning she ate a yogurt (as per her usual) with an entire crustless piece of wheat bread cut into squares.

For lunch she ate an entire cut up turkey dog, plus roughly 3.5 ounces of REAL chopped up green beans (as in, NOT PUREED) with ketchup.

Holy freaking crap. This is blowing my mind.

A Wordy Post on Words.

BubandPie asked a question regarding the ability to relate experiences in the comments of my previous post (if you haven't read it, you might want to read it before this one). I started to answer her in email form, but it grew of its own accord into a blog post. I hit on a few examples of the subtle shifts in KayTar's language and I thought it might be helpful to share. I still don't think my explanations can really give an accurate picture of how different her language skills are, but it might just give you a peek at what it can be like.

The skill of relating experiences covers a broad area. Basically, it has to do with their ability to relay a story to you. For example "BubTar hit me!" or "KayTar go (went) outside." KayTar cannot do this, but she does something that almost mirrors it. Remember when we went on the walk the other day and I said she continued to talk about it? That was a true statement, but she was not talking about it to us, she was talking to herself. She wasn't trying to relate the experience, she was replaying it for herself, word for word as it happened. "I see cat! Where cat? Meow." and so on. An observer might say, "She's telling you she saw a cat! That counts!" but it doesn't actually count, because she is just rehearsing the exact same scene to herself. That falls under echolalia/scripting rather than relating experiences; my hearing about it the experience is just a by-product from watching her recreate the scene for herself. We are in no way involved in the equation, unless I had a part in the initial activity, then she will expect me to repeat my lines, or echo her lines. She never purposefully relates and experience to me. She doesn't know how to, and truly, she doesn't feel the need to do so.

Remember in the Party in My Crib post where KayTar conveyed to me what was happening? As in, "Fall down! Mama! Fall DOWN!" when her Chicken went MIA? What I didn't include write is that I went in her room due to her crying out "Chicken! WAAAAAAHHHHH! Chicken!" about 10 times before that exchange. I found Chicken on the floor and said, "Oh no. Did Chicken fall down? Yes, Chicken fall down. Can you say that? Say 'Chicken fall down.'" and had her copy me each time I went in. It eventually evolved into "Fall down! Mama! Fall down!" because she knew that is what I wanted her to say. She wasn't spontaneously telling me what happened, she was repeating what I taught her to say to elicit a response from me. If I had said, "Did Chicken fall down?" she couldn't and wouldn't respond with "Yes." she would parrot "Fall down." (which you will notice are the last two words I said, not a spontaneous reply either) because she doesn't understand what really happened, she just memorized what she is SUPPOSED to say. Much like when she says "A-gah ka-sanks." when she tries to give me something and I prompt, "What do you say?" she adjusts it to "Take it!" because that is the expected set of words for the occassion, not because she really grasps the meaning.

Another difference I've mentioned before is that she can't answer the questions, "What?" or "Why?" even with the aid of her scripting. She just can't fathom it at all. She just parrots the questions right back at us. It makes these conversations fun:

Her: Help.

Me: Help what?

Her: Help PLEASE.

Me: No, help please WHAT? What do you want help with?

Her: Help please.

Me: What are you doing? What do you want me to do?

Her: Do.

Me: Do you need help?

Her: Help!

Me: Why do you need help?

Her: Help.

Me: Do you want me to help you?

Her: Help you!

Me: No, Mommy help KayTar....what?

Her: Help KayTar.

Me: Help KayTar what?

Her: Help KayTar please.

Me: What do you need Mommy to do?

Her: Mommy-a-do.

Me: Show me.

Her: Show me.

Me: I don't know, baby.

Her: *long pause* Help please!

Me: *pulling hair out at roots*

She has recently started to come up to us and say, "Walk!" and walk away expecting us to follow her. She glances over her shoulder to make sure we are following and then she takes us to what she needs or wants. She can't do it when asked, "Show me." or "What?" but she takes action of her own accord because of the deficits in her verbal skills. The action is not tied to any words, it just stems from her reaching her frustration level with the lack of communication and has learned that making us follow her is easier than trying to use words she doesn't truly understand. I'm trying to attach words to it for her, by saying, "Are you showing me?" (to which she replies, "Show-n me.") while we are walking or "What do you want help with? Oh! You want help with your puzzle. Say 'Help with puzzle!'" Eventually she will make the connections.

I know it sounds incredibly picky and perhaps like it shouldn't matter at all, but it extremely important when interacting with her. There is a forced/halted feel to our interactions. I have to say the exact same things to get a response. It feels like she and I are in a play everyday where the lines don't change. The action sequences change, but the same lines are applied no matter what. Or, like I've mentioned before, it is like talking to a foreigner who has a mental English translation dictionary full of "helpful phrases" that are used over and over. It is a huge list at this point, large enough to fool people into thinking it is fully understood, purposeful speech, but it is still largely regurgitation.

An example of a conversation she only understands one way:

Me: What is your name?

Her: Name.

Me: Who are you?

Her: A-jou. (are you)

Me: *touching her chest with my pointer finger* Who is this?"

Her: TiTar! (KayTar!)

Explaining this makes me feel kind of neurotic, like I am looking for something to be wrong when there really isn't. BubandPie hit the nail on the head the other day in this post, "I feel vaguely embarrassed, as if I've been revealed as some sort of Munchhausen-by-proxy mother, seeking attention by obsessing over her child's minor quirks." But the truth is, there is something wrong, it just hides itself well. KayTar has mastered "Fake it 'til you make it." This causes problems in a myriad of ways, because unlike 6 months ago when she had only a few words and her delays were obvious, now they are subversive. It takes a very detailed and close look at her to realize what she is doing. Her echolalia is not the meaningless repetition of a word over and over for self-stimming purposes, it is intricate. She has hundreds of memorized scripts for various situations and has learned to use them well without really fully understanding them. She does understand certain things, I don't mean to imply she is completely clueless with her speech. However, for each thing she does understand there are two to three additional things that she can give the appearance of understanding without really grasping it. The biggest issue will be qualifying for district services, I'm going to have to push for a really thorough evaluation or it could easily be missed. The ST said if she doesn't continue to receive services it will definitely affect her academics. She also said that most people will continue to think KayTar is age appropriate and therefore have unrealistic expectations of her abilities. The girl puts on a good show! It reinforces how intelligent she is, because even though she really doesn't understand language, she has found a method to use it as a tool in spite of that. Most toddlers understand more than they can speak, KayTar speaks more than she understands.

This morning we had the following exchange:

Her: Tiny! Tiny duck.

Me: Is your duck tiny?

Her: Tiny duck.

Me: Is tiny big or little?

Her: Wittle.

Me: Is tiny little or big?

Her: Big.



And this one as well:

Me: KayTar, get the remote.

Her: A-mote. *mimicking button pushing with her thumb* (I don't know if this is an actual sign or not. LOL.)

Me: Can you get it? It is on the table. *pointing*

Her: Table *pointing in same direction, but at nothing*

Me: It is black, see it?

Her: See it.

Me: Can you get it?

Her: Get it.

BubTar: Here's the remote, Mom.

He gets tired of our jabbering at times and steps in to "help". The point of course was not my inability to get the remote, it was to see if KayTar could figure how to follow the command, even if I had to continue to give additional clues or even walk over and put my hand on it to help her find it.

The solution is of course, continued speech therapy, as well as continued work with her at home. The goal is now to teach her concepts rather than word absorption; instead of getting her to just say "Blue block." I need to ask, "Is the blue block INSIDE the box or outside the box?" or "Are the fish in the water or in the sky?" or "Do birds fly or swim?". When reading books, I need to ask, "Is the boy jumping or sleeping?" She also suggested taking a series of photographs when we are out and about and print them later for KayTar to look through with us while we give her words to describe the experience, "We went to the park. KayTar went down the slide. We saw a flower. We walked home." She said initially, she will regurgitate, but eventually the concepts will sink in and she will become competent in in her speech. Right now, if I had to give a percentage of her vocabulary she truly understands, I'd have a really hard time. She understands 100% of labeling...but concepts are much lower, definitely below 50%, maybe closer to 10% even at this moment in time. I'd say out of everything that comes out of her mouth in a day, she truly understands an average of 50% of it, maybe. These are super rough approximations, though...definitely not scientific in anyway.

In spite of this, she surprises me at times. Last night she had her half empty block crate and she said, "Fish-e-water! Splash splash!" clearly pretending her hand was a fish and the crate was a tank. Later she held her hand like a fishing pole and said "Fishing! Reeee big fish!" and held her hand up like she had caught something. And still later, she pretended the crate was some sort of trough and she pretended to eat out of it much like a pig...this one evolved into it being a box of sandwiches, "Mmmm. Sa-wich! Eat it." Whether the words are from something she has previously witnessed or not (I have no clue if they were), she came up with the imaginative situations all on her own, pretending that something clearly meant for one thing served several totally different purposes. She played out several different scenarios using the same prop, with no suggestion from anyone as to what it might be. This is the first 100% spontaneous imaginative play I've ever seen her engage in. It was pretty amazing. Today she did it again with Legos and the top of the toybox. The Legos were a car, and the toybox was the road. "I racing. Vroom vroom. Racing." She also called the living room a "playground" and pretended to go down a slide and swing on a swing, exclaiming "Wheee!". New things are emerging all the time for her.

Does your child engage in imaginative play, such as pretending to care for dolls? Yes!

Again, if you finished this, gold star! I don't know how much sense it made for people who haven't actually interacted with her, but it was the best summary I could give of what her verbal deficits are like and what they mean for us in day to day situations. It all still feels very jumbled and blurred, but I hope this made things a bit clearer. I didn't include examples of her accurate speech, because I was trying to represent the portions that stand out as abnormal. Her speech is not 100% abnormal, and I don't want to mislead anyone into thinking it is. I also don't mean for this to downplay her verbal explosion in any way, because that is extremely exciting and we couldn't be more thrilled about it. This is just the other side of the coin for her, what it means to have a vocabulary that exceeds her understanding and how it plays out in her daily life. It is important that I learn to explain these things, because soon, I'll be explaining it to the district evaluators and a new set of therapists and teachers. I hope by that time I've learned to say it in fewer words. ;)

Evaluation Time!

Last year, age 19 months.
(Bold denotes qualifying delay/atypical development)

Cognition: 15-17 months; 2-4 months behind
Expressive Language: 13 months; 6 months behind
Gross Motor: 10-11 months; 8-9 months behind
Fine Motor: 18 months; age level
Social: 16-18 months; 0-2 months behind
Self-Help: 16-17 months; 2-3 months behind


This year, age 31 months.

Cognition: 31-32 months; age level
Expressive Language: 28-29 months; 2-3 months behind*
Gross Motor: 25 months; 6 months behind
Fine Motor: 31 months; age level
Social: 31 months; age level
Self-help: 24-26 months; 5-7 months behind


Long story short, KayTar will continue to receive services until she switches into the district in February. Everything will remain the same with the addition of HI services. HI services are hearing impaired services with a teacher from the district. I was told it streamlines the transfer when there is already someone from the school involved in KayTar's therapy regimen, and because she qualifies for this, it is the best way to start the transition. Her delays are slightly smaller than they were last year, except for self-help which has actually gotten larger. She still qualifies in the same areas, regardless of the slight shifts.

*Expressive language was the tricky one. The therapist who evaluated her is not her normal ST, but she was extremely thorough and knowledgeable. She was able to identify those areas of KayTar's language development that nag at me. There is a feeling of something being not quite right, but for me it is hard to really pinpoint. I attempted to do so in this post, though. She said that to the outside observer, someone who is not trained as a speech therapist or who does not work with KayTar daily, she will appear to have normal speech abilities at this point. KayTar accomplishes this through an impressive use of echolalia and scripting. She is catching up in number of words and length of sentence, too. But she does not have the following skills:

Relates experiences using phrases
Answers open ended questions

The fluidity of language does not flow through her; it is cut and pasted from prior instances.

She also has articulation difficulties when using multiple words. It all become one word. Like "What color is it?" it all comes out together in a blur, because she thinks of it as one word. "Whacasit?"

She can't follow multi-step commands or understand concepts that are not concrete, either. A good example of this is her hearing tests. Most children by this age are able to be tested in a sound booth, but because KayTar cannot understand the instructions or respond reliably, it nulls the test.

It is all very intricate and difficult to explain, but the good news was that a new therapist coming into contact with KayTar for the first time was able to see it without my mentioning it. When people interact with KayTar remark that she is caught up speech-wise, I alway cringe internally, because I know that things aren't quite right, although they might appear that way to the casual observer. It makes me feel a wee bit neurotic, to say, "Well, not exactly." Trying to explain it is difficult, especially when I can't articulate exactly what is or is not happening properly. Suffice it to say, the ST said to keep up the speech therapy and that twice a week will be excellent for her. She also highly recommended the HI program as well, since they tackle speech as well. She made a few suggestions for the transition into the district and things to request at her IEP (like an FM system).

She's doing great, though, and making strides. Having all of her ECI therapists here, with the addition of two new ones was great fun. KayTar thought it was party and she had a blast going from one to the next; playing, laughing, and cuddling. They oohed and ahhed over how intelligent she is and bragged about her reading and phonics skills. It was nice to hear them all discussing her with such pride. A year ago, she couldn't stand them for the most part, and now they are great friends. It is heartwarming to watch. All in all, it went really well.

Last year. My slumpy little baby.

This year. Big girl!
Among her vast and varied accomplishments, she has also grown an impressive head of hair this year.

Party in my Crib, 12am.

KayTar used to have one and only one lovey. Her Gee.



Then she fell in love with Dolly in a toy aisle at the store and she was added to the list of Must Haves.


Dolly sporting her heart monitor (she actually has a heart on her dress, directly under the monitor) and hospital bracelet.

Soon after Dolly was added, KayTar found Bunny in the depths of the toybox. Bunny was BubTar's as a baby. Bunny is a pull-string musical toy, who happens to be Peter Rabbit. It hung on BubTar's crib and played for him nightly, and then eventually was tied to his toddler bed where it continued to serenade him...poor Peter was discarded sometime around his move to the twin bed he now inhabits. KayTar decided Bunny was also a Must Have.

And thus, the Bedtime Brigade was born!

On day outings, we typically only bring Gee, because she always requires Gee. Bunny and Dolly can stay in the crib some days, other days they have to come along. We're never really sure how it will play out. We just make sure everyone gets tucked into bed at night and life runs smoothly for the most part.

Well, last night, KayTar used her burgeoning verbal skills to request additional bedtime friends, here is the guest list to the Party in her Crib:

Gee
Dolly
Bunny
Baby
That One Bunny (different from Bunny)
Chicken, the tiny Rooster from the top of her Little People farm
Duck
Fish

Chicken kept jumping out of the crib, causing KayTar to cry out, "Fall down! Mama! FALL DOWN!"

Baby kept crying, causing KayTar to shout, "Stop crying. Peep! Goo-night Baby."

Duck and Fish took turns hiding underneath Gee, causing KayTar to lament, "Duck?! DUUUUUUCK! Where? Where DUCK? Fiiiish! Where? Where FIIIISH?"

That One Bunny kept hopping onto the dresser, mysteriously, "That One Bunny? Geeet it!"

Gee wouldn't stay on her feet properly, "Gee! Peet! GEE! Mama! Peet! Peet!"

Thankfully, Dolly and Bunny were exhausted from their full day and went right to sleep. I can only imagine what mischief they might have gotten into.

And so, essentially, I went in and out of her room roughly 30 times between laying her down and the time she actually fell asleep.

While exhausting, I am getting a kick out of this sudden leap of cognitive and verbal skills. It is quite a window into her world, and I wonder how frustrating it has been for her to not have the skills to communicate these seemingly silly, but important to her things before now.

I think the late night also had quite a bit to do with the inhaler. While it is still proving helpful in avoiding the nightly coughing fits, it is not helping her sleep. I think it is making her feel jittery. I know my inhaler always does that to me. The first few days she slept like a champ, finally back to a normal bedtime, but I think that was pure exhaustion from not sleeping well for week prior. Now that her body has filled the reserves, she is having a rough time falling asleep. She takes a dose of her inhaler directly before nap, and it has taken her over an hour to fall asleep for 2-3 days at naptime, and a dose directly before bed and we've seen bedtime scoot back and hour or two as well. There is nothing to be done about it, really. With medicine every four hours, it doesn't leave much wiggle room. If she doesn't take the next dose on time before sleeping, she won't sleep anyway. She still sounds fairly awful when she gets to coughing or exerts herself too much, so dropping the meds isn't an option. She will adjust, as she does to all things, and until then the party will continue.

Care to join us?

Sleeping off the Hangover.
Participants, clockwise: Duck, Baby, That One Bunny, Dolly, Gee, KayTar
Not pictured: Bunny (possibly hiding under Gee), Fish, Chicken (who likely jumped out of bed again)

Warning: All night partying may result in loss of pants.

Or maybe she just soaked through her diaper at 2am. ;)

****

We have her great big evaluation today, the entire therapy team comes here to evaluate at once...so wish us luck!

Sunlight Peeks Through

The weather is finally tolerable here, at least in the evenings and mornings, and so tonight KayTar and I decided to go out for another early evening walk. Yesterday's was such a big hit, I'm still hearing about it. "See cat. Where cat? Cat! Meow!" You'd think she'd never seen a cat before, but I guess repeated exposure doesn't make them any less marvelous to admiring little eyes. Perhaps it is the elusive quality of cats that draws children in, they are frequently in sight, but rarely in reach. Dogs on the other hand are all too accessible. BORING. When we were in the hospital last time, they brought dogs around for pet therapy and KayTar would have none of it. "No dog! Bye!" in her shrill chirp. I think she would have preferred feline visitors.



We looked around for orange kitty, but he was out carousing. The breeze was blowing and the sun was just warm enough, so we walked back home to invite Josh and BubTar to accompany us to the nearby park. It feels like it has been months since we've been outdoors, like the camping trip was our last hurrah and we've been snowed in since then. Instead of being trapped in the house by the external force of snow, we were trapped indoors because of the internal force of illness. It was so nice to feel the sunlight on my skin. KayTar made it three or four houses down the block before descending into the grunt-like breathing that signifies she is having trouble getting enough air. I had to scoop her up against her will and carry her the rest of the way.


Last Thursday she started having difficulty breathing, she was grunting every time she took a breath, her skin was retracting around her ribcage, she couldn't manage to drink her bottle and keep up with breathing simultaneously. We watched it on Thursday, because her color was good and we saw a bit of improvement after naptime, but she wasn't doing good enough by Friday for us to chance the weekend. The pediatrician said she was wheezing and her left lung sounded a bit worse than the right. She gave us a script for an inhaler and spacer mask and KayTar has been taking 4 puffs every 4 hours. The first four times she took it, she emptied her stomach all over me, but now she is an old pro at it. "Messin time? Count!" Because we count her breaths while we hold the mask on. She plops into her Baby Papasan willingly and takes her medicine like a big girl. It has made such a difference, not only with the apparent breathing difficulties, but at night, too. She is finally not coughing until she vomits at night, and she is going to bed at a decent hour again. I hate to think she's been having breathing problems for a month and I only just caught on. Ack. But she is sounding better now, so that is what matters, I suppose. She still sounds junkie in the morning and anytime she exerts herself, but for the most part she is doing well with it. I think we overdid it by going to the park, because in spite of the medicine, she's been having a rough go of it this evening. She has been coughing and grunting quite a bit, even though she had just had a dose of medicine an hour before we went outside.

We had a good time at the park, lots of swinging and sliding. We stayed just long enough to get a quick fix and then headed home. Even though, it was a bit much for KayTar, we still enjoyed it. Just being out in the sun together for a bit felt good. It felt healthy, even though we aren't quite there yet.

Overheard yesterday...

After vomiting all morning, BubTar begged for a cracker. He threw them up. He begged for more crackers, so we gave him one and told him to eat it so slowly. About ten minutes later, he called me in to the Quarantine Room. He said, "Mom! I prayed to GOD and asked Him to not let me throw up this cracker! AND I DIDN'T!"

He didn't throw up the rest of the day. At bedtime he whispered, "Mom, I think it's a miracle!"

****

KayTar and I went for a walk yesterday. It was a short walk, because she started having coughing fits after about 10 minutes, but it was lovely outside. And she talked the entire time.

"I see tree."

"See leaf."

"I see cat. Meow."

"Where cat? Ight dere!"

"Reeee big tree. Touch it. Touch reeee big tree."

"Grass. Ground."

"Big car."

"House."

****

Last night Josh and I were watching a National Geographic program called "Inside the Living Body". It was discussing the chemical aspects of choosing a partner, how pheromones send signals about a person's genetic makeup to be interpreted by the other person's olfactory senses to decide whether genetically a person is a good match for you, considering genetic markers to make the best possible match for your children, health-wise. Josh looked at me and said, "Well, one of our noses wasn't working properly, obviously."

Ain't that the truth.

[Almost] Silent Sunday: The Streak Continues

[His*]


[Hers]

*Stripped bed and non-matching pajamas brought to you by Vomit, my friendly morning wakeup call.

Pausing for Beauty

Let's rewind a bit, shall we? Sunday I had several hours to myself, reading, enjoying coffee, getting a haircut. Monday night, I went out for coffee with friends, no children. And then Tuesday, I received the most beautiful gift. The beauty of the gift was only outdone by the beauty of the heart that gave it.


These arrived on my doorstep Tuesday afternoon when everything matched their beauty. KayTar was healthy, I had been able to take a bit of a breather, life was realigning itself to some semblance of normal, and the flowers were the beautiful icing on the cake. I thought my heart would burst.

And then, as it always seems to happen, KayTar started to get sick and the dark cloud crept in once more. I felt overwhelmed immediately. The good; the beauty that I had found in those few days vanished as quickly as it had come. But the flowers were blooming, bigger and brighter each day in spite of it all.


Each time I enter the kitchen, where they sit perched near the window, I pause to look at them. At times, I pull them down off the counter just to feel the weight of them in my hands, the weight of someone's thoughtfulness right there in my kitchen. The kitchen is the first place I go each morning and usually the last place I visit each night. Each day, the flowers whisper good morning and goodnight. When KayTar wakes in the night, I stumble in, half-blind to get her a drink. The flowers wink at me, through my squinted, tired eyes; reminding me that beauty exists even here, in the wee hours of the morning...even when everything else sleeps soundly.







The rustle of the leaves, the velvet of the petals, the vibrancy of the colors work together to speak out to me in a voice I recognize, saying, "The beauty is always there, you just have to remember how to look for it."

And I whisper back to them, "Thank you. Thank you."

Nightly Ritual

We stood in the bathroom, debating whether medication was the route to go.

"If we give it to her, she's just going to throw up. She just took a bath and drank some Pediasure."

"If we don't give it to her, she's going to cough until she throws up. That will mean new pajamas, new sheets, another bath, and several more hours of wakefulness."

"I don't know."

"Well, we need to decide something."

"I don't know which is better."

"We just---"

Just then, the child standing between us vomited onto the bathroom floor, effectively ending the matter at hand.

"Yicky yicky."

"Did you throw up, sweetie?"

"Frow up. Yicky yicky. 'Cue me." (excuse me)

We scattered in the well-worn way we always do. Nearly mechanical, we can do it in our sleep. I fetched the wipes, Josh stripped her down. He wiped her off and passed her off to me. He scrubbed the bathroom floor, while I finished cleaning her and went to get a fresh pair of pajamas.

"Not DAH ONE!" She said, shrill with conviction when she surveyed the pajamas I chose. "Poinkoink one." (pink)

"This one? THIS pink one?" I asked, showing her the other options.

"This one?" she parroted, unsure, watching me for a clue.

I tried one of our word games, "Which one?"

Her face lit up in recognition, "Which one, which one? A dah one!" pointing at one pair of pink pajamas.

"You want to wear THESE pink ones."

Shaking with excitement, "Poinkoink ones!"

Once she was in her bed, quietly watching a LeapFrog video on the computer (vomiting makes her too wired for sleep, but activity just gets it going again), I collapsed onto the sofa next to Josh and picked up my novel. I felt Josh peering at me, through the back of it and looked up to meet his eyes. Every bit of silence in the room screamed, "Will is always be this way?" Instead, he spoke.

"How does it even happen?"

"I thought we'd have ten days at least, with the antibiotics shot in her system. I know it doesn't do anything for viruses, but you'd think we could get TEN DAYS."

"Does BubTar bring the germs home, without ever catching them himself? Other than the rash, he hasn't been sick. And well, KayTar, she's been sick since he started school, is there anything to be done about it?"

"Just wait. It will have to stop sometime, won't it? She can't just stay sick for 10 months of the year."

She cried out, ending the conversation. Josh went to check on her. I remembered BubTar needed a load of laundry done and went to start it. Josh pops in with KayTar's pillowcase and shirt, the coveted poinkoink one.

"Toss these in, too."

"She threw up again?"

"A little, not too bad. It only got on the pillow."

He left to finish tending to KayTar. I let the washer top slam of its own volition.

"Dammit."

Around 11:45, we turned out her lights and huddled quietly on the sofa. Going to bed is too hopeful, too risky, too agitating when you might be stripping beds and cleaning vomit in a few minutes. I went back to my book; he played a video game on mute.

"Ten days..." I whispered, from behind my book. "Couldn't we have had ten days?"

He patted my leg to say, I know, I understand.

Minutes passed.

Quiet prevailed.

We staggered off to bed.

Recent Developments

After my last post, Kristin noticed my mention of KayTar playing with playdoh, and I realized that I haven't given any sort of developmental KayTar update in ages. We are seeing so many emerging skills, that I would be remiss in not filling you in!

Occupational therapy: Because KayTar's fine motor skills are one of the only areas she scores on target for, her OT consists largely of sensory therapy. A typical session generally consists of an activity she is resistant to (playdoh, shaving cream, or finger paints) and an activity she craves (like time on the swing or in the ball pits). In the beginning, KayTar was fully resistant to certain things, to the point of gagging and vomiting at the mere touch of it. [If you are a newer reader to the blog, you can click this link and it will show a video of KayTar gagging, because there is a dot of shaving cream on her pointer finger.] Since we switched her OT from dedicated feeding therapy to a more board spectrum sensory therapy, we have seen huge improvements. While participatory, she always reaches a point when she is finished. She balls her hands up and refuses to touch anymore. Our goal is to get her to touch it one more time after she reaches that point. Then we put it away and she gets to wash her hands and splash in the sink. Always a good reward. Now, we paint almost every day at home. She begs to do it. Playdoh is also slowly becoming a favorite, especially on her terms. At home, she uses toy cooking utensils and cookie cutters, so she doesn't have as much skin contact as she does in therapy and she is able to control her level of comfort. Shaving cream, though, while we are seeing amazing strides, she reaches her point of no return with that one much quicker than the others and she does not desire to touch it outside of therapy times. But a year ago just a dot of it on her skin would make her vomit, so the fact that she will now pick up a basketball with shaving cream smeared on it and toss it through the hoop, is a miracle. This growth in her tactile sensory tolerance levels has not yet translated to her eating habits, but everything comes in baby steps. In fact, she had strep last week and it didn't land her in the hospital. It never got to the point of full refusal of food and drink and her senses never went so haywire as to induce vomiting if we opened food packaging in from of her, so I do think slowly, we are making progress that matters.



Speech therapy: She recently switched from a once a month visit from an ECI therapist to a once a week session with a private therapist. We will be seeing her twice a week, once an additional slot opens up. In the last week, we have seen HUGE improvements with KayTar's speech. I think she is probably approaching the verbal milestones expected by the second birthday, but for her, it is wonderful. Here are examples of new things she is saying:

In the car, driving to pick up BubTar, she said "See that?" while she pointing out the window.

She now says, "Help, please." when she needs help. Many time she starts out whining, before we prompt her with "What do you say?" and then she remembers how to ask.

Instead of her gibberish phrase, "A-gah kah-sanks." that she used to say when trying to hand us something she no longer wants, she now says "Take it!" but we generally have to prompt her for this response.

She is able to mimic 2-3 word sentences if we present them to her, such as "I want milk." or "Help me, please."

She is willing to repeat longer sentences if we feed them to her one word at a time. "I want a bottle of milk." She repeats each word individually after we say them, but she can't say it all as a sentence typically.

While her typical sentences consist of two words, like "Help, please." or "More milk." or "Sit down." or "Play cars." She will occasionally say a longer sentence. Today while playing Don't Spill the Beans (which she thinks is called "Spill Eggs.") she said, "Oh no. Eggs fall down." which is monumental in KayTar speech. She was mimicking what I had said the previous time the beans spilled, but parroting or not, she is making very real strides. The more she repeats these phrases, the easier she will be able to use them herself when the situation arises. She still struggles with questions and does not understand things that are not concrete. But new things seem to be emerging every day for her, and it is definitely exciting. Yesterday, her developmental therapist commented on how rather than simply naming objects with her words, she is beginning to interact with people through them. It is so true, and I think that is what is most exciting about it all. Instead of being an island unto herself, she is actively trying to engage us, using speech among other things. She will bring the ball into the living room and tell me, "Sit down. (pause) Please? (pause) Play ball. (pause) Kick!" or walk up to me and say, "Walk!" and start walking so I will follow her. Typically we end up in the bathroom and she says, "Brush teeth? Purple? Little Einsteins?" She loves to brush her teeth, her toothbrush is purple, and the toothpaste is Little Einsteins. So, while she isn't developmentally on target, she is able to communicate not only her needs to us (food, drink, sleep), she is now able to communicate her wants to us as well. It is pretty special. Sometimes I feel like she is a foreign exchange student with a little KayTarese/English dictionary in her head and she has to look everything up before she says it. She memorizes important phrases and uses them over and over, just like I would do if I was in a foreign country. The flow of conversation does not come easily to her, but even so, she is learning to operate within those confines and let us know what she needs and wants.

Physical therapy: She is walking, of course, since 25 months. She is not running, but walking quickly. She attempts to jump, but her feet usually don't leave the floor. She's gotten them both maybe a half inch off the floor maybe five times out of a hundred? But she is trying! She is getting better at squatting, although it is still difficult for her. She can go up the stairs, while holding someone's hand and using her dominant leg, she struggles more with trying to go down the stairs. I think she is probably the farthest behind physically speaking. When we are out at parks or the Children's Museum or even the grocery store, I see babies roughly 1 year in age consistently outdoing her. But she is progressing, no matter how slowly. There were times that we wondered if she'd ever walk at all, so slow going or not, we are still incredibly happy.


The day she received her walker, last December.

Developmental therapy: Her ECI caseworker is also her developmental therapist, and we just love her. We were supposed to get shifted off her caseload a couple weeks ago, all of her Tues/Thurs appointments were, but instead she changed us to Mondays. Awesome. In DT, she basically plays in developmentally appropriate ways. I think KayTar gets to call the shots just a bit more than she does in her other therapies, but whatever she wants to do, it is used to specific purposes. I think I've learned the most in developmental therapy. Watching the therapist interact with her and use so many little things to teach her different concepts helped me realize that we can do the exact same things with her, and we have been for a year now. A year! I can't believe it has already been that long. Because DT is across the board therapy, there aren't any specific achievements that aren't already listed in the other areas.

That's where we stand for now. Next week she has a big ECI evaluation and so I'll have lovely numbers and statistics for you all then. Whatever the numbers say, she is doing well. This time last year, I had a non-verbal kiddo who was scarcely crawling and not interacting much at all. This day, one year ago, I was preparing for her very first specialist appointment. I was terrified. The ground had been knocked out from under me and I didn't know how to stand again. This has been a year of marked development for both KayTar and myself. She's been learning to live in my world, and I've been learning to live in hers; the one filled with doctors and hospitals and therapists and tests. The world where things don't always come easy, questions don't always have answers, and we don't always hear what we'd like to. But when I scoop her into my arms it doesn't matter whose world we are in, it just matters that we are together.

Makings of a perfect day...

KayTar is, dare I say it, 100% better today. Okay, 95% better, because it appears she has a little virus on top of the strep that is causing quite a bit of sneezing and producing copious amounts of snot. She wet 4 diapers before before noon today, which is a vast improvement from yesterday with a total of 4 all day. She took in 14 ounces last night before bed, which made all the difference. Things are good. And so, today, I took the opening to make my escape.

Once the kids were down for nap, Josh and I, ahem, spent a little time together before I cut and ran. First, I went to the bookstore, grabbed a coffee, and sat down and quietly thumbed through a couple of PostSecret books. Once I had finished them, I put them back and perused other areas of the store, happening upon a novel that piqued my interest. I generally have difficulty choosing books, especially books I have no prior knowledge of, but this one grabbed my attention in a rather subdued manner and so I picked it up. I sat down again to read just long enough to get a feel for the book, to be sure it could draw me in, that I could connect with the characters that lived within the pages, and then I purchased it and left. From there, I went to the hairdresser, where they had a splendidly long line. Splendid because I had a brand new book with me and there were no small people vying for my attention while I waited. By chance, I ended up with the hairdresser I really like, but I always forget to get her name. From there, I swung by the grocery store for some Pediasure and returned home.

I had only been gone a few hours, but it exactly enough. I just needed to be off-duty, to have no one else to look after for a bit, to sit in the quiet and just exist. When I got home, the kids had finished napping, KayTar had eaten a yogurt, and everyone was happy. I walked in and KayTar said, "Ind it! Ind it!" which means, "Found it, found it!" which then translates further to, "Found you, found you!" We played ball, colored in her coloring books, and then by made and pretended to eat some delicious Playdoh cookies. You should hear her attempt to say delicious. Almost as adorable as when she attempts to say adorable. "Dory-bul." Now she is resting and enjoying a Pediasure, the boys are outside playing, and I am, of course, blogging, but not for long. I have a sofa and novel calling out to me.


Life is good.

Wisdom and Worry

I was mid-diaper change and ran out of wipes and asked BubTar to fetch the diaper bag for me.

Me: BubTar, what would I do without you?

BubTar: Well, you and dad wouldn't be parents and KayTar wouldn't be here so you wouldn't even need the wipies, Mom.

Me: Wow. That's deep. I just meant you are a good helper.

BubTar: Well, yeah.



****

In StrepWatch: September2007 news (I have to put the month in so it isn't confused with StrepWatch: January2007 or StrepWatch: May2007), KayTar woke up without a fever! She has taken in about 8 ounces of clear fluids and a jar of green beans. She had a wet morning diaper and has wet a second since then. She has diarrhea, but isn't vomiting. She felt better for the majority of the morning, but I think she overdid it and it hit her like a ton of bricks. After her bath, she stayed perfectly still, wrapped in her towel and cradled in Josh's arms. It is so uncharacteristic of her, that it really hits home how poorly she is feeling. But still, it was so sweet.



She is napping now, but I just peeked in on her. She hasn't touched her bottle and her diaper is dry as can be...four hours now. It isn't too long, not nearly, we were at the twelve hour mark when we finally conceded to go in last time, but I like to find at least a dampened diaper when I check her. I'm sure once she wakes and drinks, that will change...but it all feels like so much a precarious balancing act with her. Things can turn in a blink. If she wakes up and feels worse, she won't drink and in turn, she won't pee and then the clock will just keep ticking. I know, I know; I'm worrying about nothing and everything. But to me, it feels like preparation and prevention, and that is how I cope. Nothing is critical at the moment, and yet, I know it could be...I feel it looking over my shoulder, waiting; the memory of the last experience casting its shadow over this one. And so I busy myself tracking her intake and output, charting fevers, pushing fluids, making notes, because really that is all I can do. The rest lies with KayTar and I have to trust that this time, her body will step in and take what it needs.

***

Edited to add: She is did better post-nap. She waited a total of 6 hours to wet a diaper, but since then has wet another. She refused fluids when she first woke, but later decided to take about 4 ounces and two jars of food! She's still having diarrhea, but not to an outrageous extent. So all in all, I think everything will be just fine. I think that she turned that proverbial corner this evening. I hope she did, anyway.

And no one else has shown symptoms! The incubation period is generally 2-5 days, so we have a few more days before knowing for sure if we've escaped, but so far, so good!

[I really hope I'm not jinxing myself here.]

So, we went to the doctor...

It is FECKING STREP.

We went in to have her looked at before the weekend and the pediatrician did a strep swap just in case. It was positive. She got an antibiotic shot, because she refuses oral meds and then starts refusing anything we offer orally out of distrust. When BubTar had the antibiotic shot, it took several days to help him feel better, so having the medication in her system does not mean we are out of the woods. What woods, you ask? These woods. I hope that she continues to drink, because that is where we get into trouble. I hope it doesn't get that far this time. I think we caught it early, which is good.

But damn, right?

Our week:

Monday: Holiday
Tuesday: Pediatrician for BubTar's rash
Wednesday: Audiologist for KayTar's failed ABR
Thursday: No appointments, high fever
Friday: Pediatrician for KayTar's fever.

Oh, and last Friday we were at the pediatrician's for KayTar's well-check and immunizations.

Ack. I think we've filled our quota for a while. At least, I hope we have.

Photo of the culprit, courtesy of Encarta.

102.5 at 8:30

You know, just to keep with the theme. It is lower, you'll notice. Her small warm body is in my lap as I type this. She would like you to know the same thing I told Julie at her place this morning, "G say guh." Oh, and also? "T say tuh." In case you didn't already know. At least, the fevers aren't disrupting her newly learned phonics.

Yesterday, her fever stayed largely between 102 and 103.5 (at its highest). We got it down to the 101s only once, with a one-two punch of medicine and bath, but it quickly climbed and we couldn't repeat the lowered temp. She was, and is, drinking well enough, so I am pleased. She took in about 24 ounces over the course of yesterday, which is good. I don't think it is the Dreaded Strep, because if her throat was hurting I think she would be refusing fluids. Thankfully she is not.

I went to bed at 11, anticipating the fact that she would wake when her medicine wore off about 1am, but she never woke and I slept right on through until morning. It was quite lovely.

I'm still on the fence about a pediatrician visit. Other than the fever, some lethargy, and a bit of the body aches when the fever spikes ("Hurt. A hurt. Hurthurthurt."), she seems to be faring well. She's drinking and sleeping well enough. She is crankier today. I have a call into the nurse, just to get someone else's opinion. We shall see.


This morning, wearing her "It's fun to be one!" first birthday t-shirt, which still fits one and a half years later.

103.7 at 1:30

Yesterday, we had an ABR that went horribly. In case you don't know, ABR stands for auditory brainstem repsonse, and it is a hearing test for KayTar. You have to sedate, and long story short, after 3 hours and 2 doses of sedative she still wasn't asleep. So we had to leave and reschedule. This ABR was supposed to be done at the end of June, but has been rescheduled twice. Now it is scheduled for November.

We were there from 12-3:30 and the traffic was awful coming home. People were driving like idiots, the roads were packed, and it was raining heavily. By the time I got home, I was drained. I think I fare in these appointments pretty well, but there is something tiring about being fully on-duty, 100% devoted to entertaining a small person nonstop (not stopping for food, even though I hadn't eaten since breakfast, not for pottying because I could not leave her until she was sleeping), that is draining. We went out to dinner as a family, which was the first time I've been out of the house for anything other than a doctor or therapy appointment or hospital stay in three weeks or so. Once the kids were in bed, so was I, although typically I stay up later to feel like I've had a bit of alone time. I was just too tired for alone time.

Around 1am, Josh woke me because KayTar was talking over the monitor. Not fussing, just talking, and I said, "The sedative probably messed with her sleep schedule, if she isn't crying, just let her be." And so we dozed off again. 30 minutes later, I awoke to sobbing, "MamaMamaMamaMaaaaaaaaaaaama..." over the monitor. When I went in to check her, I could feel the heat radiating off her little body. 103.7. I woke Josh and sent him to the pharmacy for acetaminophen suppositories, because we couldn't find our last one anywhere, and I took her up for a bath. After her bath, we gave her medicine and she is watching a Signing Time from her Baby Papasan right next to me. She feels slightly cooler, although I don't want to do her the injustice of a second rectal temperature unless I feel it climbing, especially when she also had to endure a suppository. If your child forcefully vomits out medication, you have to find some way to get it in. This is our way, unfortunately for KayTar. Although, she prefers it to the oral route, her sensitivities and aversions are just too strong to tolerate it much. I sure wouldn't prefer it, though.

I put an email into the pediatrician. Generally, a fever this high makes my mind go straight to the bad place and I bring her straight in, but because BubTar has that [possibly] viral rash, I wanted to run it past her before coming in. And also, I think that 3 appointments in less than a week constitutes as stalking and I'm trying to avoid that. KayTar has no rash, though. Only a high fever with a (un)healthy dose of lethargy on the side.




And so, it is 2:57 and I am blogging...because, at least for my sanity, blogging is the best medicine.

A Milestone, presented in digital media.

Make video montages at www.OneTrueMedia.com

I've never in my life seen him this excited. Not at Christmas, not at birthdays. Never. He is beyond ecstatic.

I thought he was sobbing earlier when making those squealing noises, but when I asked what was wrong he said, "I AM JUST SO EXCITED!^1,000,000 (yes, that is meant to be excited! to the 1,000,000th power, but my superscript isn't coming out so clearly).

He has been bouncing around and shouting "LOOK! I CAN TALK WITHOUT OPENING MY TEETH NOW!" and "LOOK! I CANT BREATH WITHOUT OPENING MY TEETH NOW!" which I supposed he never realized he could do before. But there is just SO! MUCH! EXCITEMENT! in his little body, I fear it will spontaneously combust.

And me? Well, it sure does happen fast. Kindergarten last week, lost baby tooth this week. My boy. He is growing up, and he is so very excited about it. Truthfully, at times like these, his excitement about it all far outshines those motherly pangs of babyhood gone by. Nights like these you remember forever, not for the days gone by or for the shedding of a tiny tooth that began forming in my womb all those years ago; but because of the contagious excitement of one little boy, who isn't quite so little anymore.

***

Edited to add: He woke up at 6am, thrilled with his money from the tooth fairy. I sent him back to bed for a bit more sleep. When he woke up at 7am, he was sobbing because "I want my Toothy back!!" Yes, he named it Toothy. He doesn't want it back in his mouth, I think he wants it has a collectible. But he's broken into sobs twice over it today already. Losing a tooth is quite the emotional rollercoaster evidently. The highs and lows of growing up.