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For anyone who knows a child that has autism, you know how hard it is to get them to look at the camera AND give any kind of smile!

12/21/09

Well, we've done quite a bit since the last post. My mother came down for a visit for a week to help me get better organized before Lily's sister gets here in March. Lily just LOVED being with her Grandma and often preferred her to me, which is a definite first but also a welcome break! Her Grandpa came into town as well and Lily was so excited to see them both in the same place (a first for her) that she promptly made introductions. She took "Papa" by the hand and brought him over to Grandma and said "Papa...Grandma" and made them shake hands. It was very cute.

The following week, Lily and I went to NY to visit family for the week. Lily was a complete angel the whole time! Lily really seems to excel around family, so I planned this trip after the last time we went to NY. Lily was very engaging and so excited to be around everyone. Everyone could see the difference in her from the last visit. Lily has been really into the movie "Elf" which was great because it's a favorite in my family. Lily's vocabulary and speech often comes from her favorite shows and once she knew what phrases she could say to entertain everyone and make them laugh, she wouldn't stop! Her eye contact and interaction with everyone were incredible. She really wanted to be sure that everyone in her audience was enjoying her performance so she made sure to eyeball everyone and for anyone who tired of laughing after the 5th take, she would look at them and say "Laugh!!". Even on the plane ride to NY she was using her "Elf" words and phrases. She really enjoyed bothering the woman behind us who was clearly trying to sleep. "What's your name? My name is Buddy!" was her favorite phrase. She also liked to tell her "Hi!" over and over again. I tried to occupy her with a DVD and as soon as she put the headphones on she looked at the lady and said, "May I help you?" (McDonald's influence perhaps?") I think my greatest surprise about the plane ride was the fact that we were right by the engine, so it was VERY loud, but it didn't seem to bother her. The noise was even louder in the restroom though and she made it very clear while we were in there that she wanted OUT.

Lily got to play with all of her cousins and they all just love her so much! Lily asked to go home almost every day though, usually upon waking in the morning. One morning she looked at me and said, "Mommy, let's go home." other mornings I wouldn't get the full sentence, I'd get "Home, Mommy". Lily got to experience snow for the first time! She could NOT get enough of it. The first thing she did was pick it up and throw it. She soon figured out how to make snowballs and LOVED making snow angels. Every time we were traveling from one place to another she was always so distracted by the snow that I had a hard time getting her in the car.

After we finally flew home she had a rough adjustment period. She tantrumed quite a bit and seemed to get frustrated quickly. Luckily that subsided after about 3 or 4 days. She LOVED the Christmas tree that Daddy had set up for when we arrived home. She kept bringing us to it just to stare at it and declaring, "Christmas Tree!" She loves it so much I have actually seen her try to hug and kiss it too. She has been taking some of her own toys and trying to "decorate" the tree with them.

We went and saw Santa this week. My poor girl. I wanted to prep her for that ever popular question of "what do you want for Christmas?", so we talked about it and she decided on "Tinkerbell Toys" and I went over that question with her a few more times before she saw Santa. Well, he never asked and she assumed that Santa was going to give her Tinkerbell toys, so she cried when we were leaving the mall and again when we got home. I felt so bad! She has no way of understanding that Christmas is not here yet.


Lily's preschool class had a Holiday party and the kids sang songs and Santa came for a visit. It was truly adorable. When the class walked into the room they went to their seats and each child scanned the audience for their parents. Lily looked around for a while before she finally spotted me and the look on her face when she did made my heart melt. From that moment on I knew that I could never miss any events like this because she would just be so heartbroken if she didn't get to see me. She was so excited that she immediately got up and ran to me. After going to sit back down she kept looking at me with the best smile and waving.

The last time I was there and the class sang songs, she just sat there with her fingers in her ears. She didn't do that this time!! She actually participated (as much as she could, there were a couple of songs she didn't know because we had been in NY) but what she didn't know she swayed to and clapped along with a huge grin on her face. She even looked at me and said "Sing Mommy!". It was wonderful.

Lily just continues to blossom and everyday astonishes me with new words, sentences and skills. Her imaginative play is one of her best attributes. I LOVE to watch and listen to her play. The other day she sat her stuffed animals around their table (a square pillow) and set up a tea party for them. She then fed each of them their "cake". I have a reindeer headband for Lily that I put on her stuffed piggy bank. She started calling him "Dasher" and tried to ride him around the living room, lol.

I can't wait for Christmas day. It will truly be a great time watching Lily get all excited and opening her presents. She has been having such a great time with her Nativity scene and loves all the Christmas stories that we have been reading to her. We will celebrate Jesus's birthday with some cake and this year she will actually be able to sing "Happy Birthday" to him. A birthday party and christmas all wrapped up into one. It doesn't get any more exciting for her than that, (or for me)!

We celebrated a wonderful thanksgiving with friends and Lily is no longer sick and will be going back to school on monday, yay!
One thing I forgot to mention on the last blog that Lily did was that she "read" anthony a story. She did pretty well for her first time. It was a board book from CARS and she turned each page and said something for each page.
Lily was especially rambunctious today, so we went to Jungle Bounce (bounce house place). Unfortunately we had to turn right around and leave because she couldn't handle the noise that the machines made that blew up the equipment. She wouldn't stop plugging her ears and literally asked to go home (I want go home). At least she's communicating using more words now (that in itself has greatly improved the last few days), but it was very heartbreaking that her sound sensitivity is keeping her from an activity that I know she's always greatly enjoyed. I'm not sure how to help the situation. It's been a while since we've been to one of those kinds of places but we've been more times than I can count and it's never bothered her before. I wanted to bring her to a carnival that they were having locally and now I'm thinking that we're going to be needing to think about noise level before we go anywhere. Just another thing...

11/23/09

Lily, as usual, has been excelling. She has been doing a lot more "typical" behaviors and is continuing to blossom. Now she really tries to engage people and even likes to do things to make you laugh. She routinely looks at strangers and says "hi". She is definitely coming out of her own world to meet everyone, not just people she cares for.

Her school had an event for Veteran's Day that I attended with her. As she was sitting on my lap, she would routinely look up at me and say hi with a big smile on her face. At one point I wasn't looking back at her and she cupped my chin in her hand, turned my face to look at her, and said, "You like this?". Oh what a proud moment! Not only was she "experience sharing" with me the whole time, but she actually wanted to know how I was feeling. This is a HUGE deal for her! What a milestone! Since then there have been other times when she has asked me if I am happy ("mommy happy?") or commented to me, "mommy is happy" when she sees me smile. Lily has also been adding my name to her requests if she gets ignored, as if it reiterate that she is indeed, speaking to ME. She also has been saying "ok" in response to questions or requests on my part, instead of repeating what I say to her (which she's still doing, just a little bit less lately).

Today we went to the park and she seemed to really enjoy being by the water and looking at the ducks and turtle. I love it when she makes her own comments, like "brother, sister!" when she was pointing at the ducks, or "Squirt! Dude...Totally" when she was looking at the turtle (you'd have to have seen Nemo recently to get that comment).

The other day I told her that I love her and she looked right into my eyes and said, "I love you too Mommy!" It's just one of those things that is probably taken for granted by so many parents. I started BALLING my eyes out when she said that to me. It has been my greatest gift. Another thing that she has been routinely doing is saying "good night mommy" before she goes to sleep at night and for nap time (without my saying anything first). It's just so precious to me.
On a funnier note, she has been known to talk as she is falling asleep. Her latest is yelling, "chickens! chickens! chickens!" while giggling. Hard to believe she wasn't awake. Makes me really wonder what she is dreaming. Another time she was asleep and seemingly woke for just a moment, looked up and point and yelled "fire truck!" and then passed back out again, lol.

Lily has been continuing to follow directions better and we were even able to play a game as a family! We played Craniums Hullabaloo and Lily seemed to really enjoy it. Lily is able to communicate her wants much better and has been requesting things routinely that she hasn't seen for a while (a toy or a movie). This is great because she is growing out of her own little routines and expanding on the things she enjoys and is not fixating so much on any one thing.
She also has been calling our attention to things and saying "look at this" or "watch this".

Before Lily started school she was doing pretty well with the potty training, and for the first couple of weeks at school (not at home though) she routinely went. She has boycotted the potty all together now, which for now is ok, particularly since she is on day 12 of diarrhea! I'm not sure what is wrong. I tried the BRAT diet (no success) and a special probiotic her Dr. prescribed. I even had her stool tested and everything came back negative. My poor girl had the worst diaper rash, though thankfully with a prescription, that has cleared up. She's been waking in the night with full diapers and then doesn't want to go back to bed, so that's been hard too. Luckily she still seems to stay hydrated, has been eating well and has kept a pretty good attitude through it all.
One good thing that happened with it was when she first started with the problem, she was sitting on the couch and exclaimed "go pee, go pee!" so we rushed to the bathroom and she went, though what came out was not what she had expected. The good news is she recognized that she had to go and told me!! Yay!!

Lily seems to be understanding (to some small extent) that her little sister Meadow is in mommy's belly. She's even been giving her hugs and kisses! I'm wondering how things will be when she sees her for the first time. It will really make life interesting when there'll be the two of them to contend with. I'm really starting to look forward to it more than be scared by it, which has me feeling much better!

10-30-09

Lily has adjusted quickly and is doing very well at school! The school is totally wonderful and I feel so blessed that she is able to go there. It really is the perfect place for her and has yielded some wonderful results! She is listening better and is able to process information faster. Her eye contact has improved and she is following directions much better. Her speech is better (she is able to have much longer word utterances). She still has difficulty communicating with actual sentences, but that will come in time. Some of that is just about getting out of the habit of communicating with just a few words and some of that is about us having to enforce her use of sentences more often and waiting for her to ask.

Her teachers love her and she loves them too! They sing songs, do crafts and have a lot of field trips and special things that they do and I am happy that I can be a part of all of it! Last week we went to the pumpkin patch and a picnic in the park. Tomorrow (well, today actually) is their fall festival where all the kids dress up in costume and have little games and activities planned where the parents can come too. Lily likes going to school and I am so happy! It has given me some time to catch up on some appts. and things and has been nice to be able to schedule dr.'s appts. in the am and not worry about having to bring Lily or ask for a sitter.

Lily seems to be much happier and I am enjoying her more than ever! Anthony told me that last weekend she was hiding and yelling "Help!" over and over again in desperation. He ran to her as fast as he could in a panic and when he found her she smiled at him and yelled "SURPRISE!"
Gotta love it.

10/17/09

My little girl turned THREE this week! I can hardly believe it! We had a great time celebrating with family at Chuck E. Cheese the night before, a wonderful day with friends the day of and a happy little girl who LOVED opening all of her presents!

I went to an eligibility meeting for Lily that evaluated her to see if she qualified for state services. We went over all of her scores from all the testing that she had had done. She did not qualify for special education (wouldn't have put her in that anyway), she did not qualify for OT services (no surprise there), she did not qualify for speech services (shocking to me) and because of her cognitive scores they were on the fence as to whether or not they would be giving her any kind of services at all! The speech therapist really went to bat for Lily (I initially did not like her at all in previous meetings, but sometimes a hard ass comes in handy! Actually she was quite nice to me during the meeting and it was great to hear everything she had to say, I have to say I agreed with her on most everything). In the end it was Lily's diagnosis of autism that got her services. Without it, she would not have qualified. This is very sad to me. She's come VERY far and I am so proud of all that she has accomplished, but she still has so far to go. What is wrong with the state? She so clearly needs services. How many slip through the cracks? What if I had not gotten Lily diagnosed?
We put together her IEP (individualized education plan) and I was very happy with it. We set up all the goals that we would like for Lily to achieve as well as giving input as to how Lily learns best to give her teachers something to work with. They told me she qualified for an inclusion class that is very close to home, yay!

Lily will be starting preschool on monday! We checked out the school and it seems perfect. I heard wonderful things about their preschool program.
Lily will be the only child in the class that is on the spectrum (there is one other but they are part time), there are 5 typical kids and 5 developmentally delayed kids, with 3 teachers. Lily loved it there and threw a tantrum when it was time to leave :) I spoke with her teacher at length and she was very surprised Lily didn't qualify for speech, especially since her IEP has 2 speech related goals. She told me that she would basically be pushing Lily through the back door for her to get some extra help with the speech therapist there. I will either have her go 3 or 4 days a week, depending on how she does. I'd love her to just go M-W and have off th/fri, but I'm thinking this may be really good for her, so I'll just see how it goes.

One other great thing that Lily has been doing: today she watched herself in a video and said(a few times)"Hey, that's me!", which is fantastic that she did not refer to herself as "Lily".

10/7/09

Well, we got our second opinion from another neurologist regarding her medication. The message I got was, she's on a low dose and why change something that is working? He seemed surprised Lily was diagnosed moderate autism and said she's looking good, he thought she would have been diagnosed PDD (a lesser diagnosis on the spectrum). I got the impression he sees a lot of kids that are severely autistic since he seemed shocked that she could follow a command (I guess even I take certain things for granted now, just another reminder of just how far she's come).
Lily is starting to have quite an imagination. She pointed in the air and said "Look! Bees!" I said, "wow, look at that, their are so many!" she then said, "Bee's fighting!" smiled, and ran away.
Lily turns 3 next week, I can hardly believe it! She has been doing so well. Preschool may be in her future soon, we'll see what they say at our meeting tomorrow.

10/5/09

Lily has been excelling in so many ways! I have taken her off her antifungal for a couple of reasons (Dr. did not want her to continue her current one, and an old one we tried that we wanted to try again kept her from sleeping even with her sleeping medication). I want to try another suggestion for her yeast build up, but right now she is doing so well I don't see a need to change anything. The theory is once off the antifungal she should regress due to yeast build up. I'm not sure how long it takes for that to occur, I think it's different for every kid but I've seen no signs of regression and it has been a week so far.
Recently, she picked up Anthony's hat and said "that's Daddy's hat", she put it on and in a deep voice said, "Hello Baby Girl...Hello Mommy","Can I have a kiss?"
I had tears streaming down my face it was just too funny! I've always told Anthony to stop bothering her for kisses, lol.
She's also been telling me about things she's been doing. She doesn't use a lot of words yet, but she's initiating it on her own! She has also been wanting to call me on the phone when I'm at work and she is getting very good at communicating. We use to have to prompt her for what to say, but now she is doing a lot of that on her own. A couple of days ago she got on the phone and told me, "Park...slide" to tell me she went to the park and went down the slide. And then told me that she loved me :)
Yesterday Anthony had trouble putting her down for a nap and he was getting angry with her because he would tell her to lay down and go to sleep and she would put on her "anthony voice" and parrot everything he was saying. She ended up crying for a long time, stopped and then went over to Anthony and said "I'm ok" "I love you" and gave him a big hug.
We took Lily to the park the other night and she kept trying to point stuff out to us, saying "look!" (she was really loving nature) "trees up sky" (the trees were VERY tall). We went by the water and she saw the lilly pads and said "Frogs go?" that was her way of asking me "where did the frogs go?" since she assumed they should be with the lilly pads. Then she saw a duck and started yelling, "Hi Duck!!" several times and giving him a great big wave.
She has had such an easier time to communicate and has really been initiating conversation more. She has also been processing information a little better.
She's also been singing the songs she loves so much with different rhythms and tones. She thinks it's fun that she can do things "her way" if she wants to. Just now instead of singing the itsy bitsy spider, she said it out loud without singing, as if she was telling a story.

Several months ago Lily asked me for a baby sister, by coming to me out of the blue and saying "Baby Sister?" it was actually one of her very first questions (or maybe she was telling me what was to come). We weren't trying to conceive but weren't exactly preventing, just trying to time things right so that it wouldn't happen. Well, we weren't very successful (for the long haul, it did work for a while!) and surprisingly conceived a month later. Well, I have been feeling as though I have been carrying a boy. When trying to get Lily down for a nap she would accidentally kick me in the stomach and I would tell her "don't kick your brother!" and she would be adamant and say "kick S-I-S-T-E-R!" and she probably corrected me at least 3 or 4 times. Well, we just found out that we are indeed having a little girl. My girl has some serious intuition, or she is getting some inside information from someone, lol. She'll have her sister around mid March and yet another journey will begin!

9-28-09

It's been awhile since the last update and a lot has been happening. We went to NY to visit family and Lily surprised me and did pretty well. She really thrives being around family, though it was hard on her at the same time. It was very tiring for her to not really have much down time, trying to process new input all the time. She took a little while to adjust and when we got home she really regressed quite a bit(nonresponsive, in her own world) and it depressed me a lot. Hard to blog the negative. I think she was on input overload and that was her way of dealing with it. She really made great strides while we were there though, so I'm going to try to plan another trip soon.

Lily's grandparents came for a visit and she just blossomed with them around. I'm not sure why she is so attached to family but she had her best week yet while they were here. Great eye contact and responsiveness, it was wonderful to see. Of course now she's back to being where she was with those things, but continues to do some small but wonderful things. Since the last post here are a few things:

• She was in time out and called out for me, so I told her I couldn't talk to her while she was in time out and she said, "But WHYYYY?" Which has been her third why question that I've heard, so I'm excited about that.
• She was with Anthony at the pool and said "Baby started crying" after just that! She really has her "ing" and "ed" words down, which is great. At this point any sentencing coming out of her mouth is great to hear.
• She's been more actively playing chase and her singing has really increased, as well as her speech and articulation.
• Lily always had trouble with thinking about things in reverse. She could always fill in the blank with things like "the pig says oink" but when asked the reverse "oink says the ?" she would say "oink", but can now say pig (as well as all the other animals)
• She just recently started asking "mommy, what's this?"
  

Lily had her second eval for preschool and I just recently got the results back. They redid the tests she got originally last year for autism. She's apparently doing much better because in 2 of the 5 categories she showed no signs of autism (her creative play is right on track and she showed no physical stereotyped behaviors for autism). She scored in the normal range for her cognitive skills. She also scored in the normal range for speech, which surprises me, but I'm happy about it. Though she scored in the normal range for speech she showed a sever pragmatic language disorder.

Her speech therapist believes that she she has an auditory processing disorder, which I've known she has, but she believes that's her main problem and causes the rest of the problems that she has like her echolalia (repeating you word for word instead of answering your question), her lack of social skills and the hold up on her speech (she can talk but not have any kind of back and forth dialog with you, though she has her own dialog with her toys when she plays). She's like a deer in headlights when you ask her questions or say anything to her, she has no idea what you are saying at that moment so she'll repeat what you say back to you because she's trying to process what your saying (kind of like if you repeated a math question back to yourself because you are trying to figure it out), she knows she's suppose to respond but doesn't know how and also because she's been taught to "parrot" everything we say, it's how we got her talking in the first place and got her over the speech apraxia but she's also doing it out of habit. When asked simple yes or no questions she'll echo what you say instead of responding. "Do you like that?" is one I'll hear her echo a lot, but she won't echo questions she fully understands, like "what color is that?" Or "how many are there?" (she'll count them out loud for you) or "which letter is that?"
Those are concrete concepts for her that she gets. She doesn't understand questions like "what's wrong, or what's the matter?" or any number of different things. A lot of times she'll actually go through the goodbye process and not realize that that person is leaving until they are out the door or close to the door and then realizes it. It just doesn't process. Kind of like having a short conversation with someone while you are into a tv show, only to remember what was really said when you reach the commercial and think back on it. A lot of the time she is on autopilot.

Here's what I pulled off the net:
An auditory processing disorder (APD or CAPD) is a disorder in “how” auditory information is processed in the brain. It can be thought of as a “listening disorder” not a hearing disorder. The problem is in the brain – not in the ear.

Symptoms
The symptoms of APD are extremely varied, however, some of the most common are:

• Children who say “huh” or “what” frequently
• Children who don’t look or respond when their name is called
• Children who give slow or delayed responses to people talking to them
• Children who mispronounce typical word sounds
• Children who have difficulty following oral directions
• Children who misunderstand what is asked or said to them …these children usually answer off topic or don’t answer at all.
• Children who are easily distracted or become confused especially when there is background noise
• Children who avoid loud noises (cover their ears) even around common household noises
• Children who show delays in acquiring language
• Children who evidence difficulty learning phonics, reading and spelling

Symptoms of APD can actually be seen in infancy, however, they usually become noticed at about age 18-24 months.

8-19-09

The cute things are just growing now! Last night I told Lily if she ate her steak that she could have a cookie. She looked at me and said "Popsicle, ok?" Oh, how she is learning the art of negotiation ALREADY!! She was eating and spilled some on the floor, looked down at it and said, "It's ok" (she clearly understands that messes are the norm around here, lol). While we were eating she pointed to each of our drinks and said "Daddy's drink, Mommy's drink, Lily's drink!"

She has had such a great couple of days with her speech. She has been talking actual words nonstop. She is constantly talking with her toys. Today she found one of those horses on a stick at the dollar store so she's saying "Giddyup Horsie! Horsie Ride!" Then she rode it from the car to the front door (all the while saying giddyup, lol). She then proceeded to throw it on the roof of her "fort" (it's her climber, but we put a blanket over the top) and then said, "Help!!" followed by "I'm coming Horsie!" Then when she reached him, "Come on, come on, follow me!!" and brought him back down the tower. At the store she actually wanted TWO of those (one of each color) and I told her she could only have one, so she picked the brown one. I could see her mind working as she kept looking at the other one and I reminded her that she could only have one. As I began to push the cart away she said, "mommy too?" as she pointed to the other horse. I told her nice try, but "mommy" did not need a horse.

While we were at the dollar store I solved one of those great mysteries. Lily has been saying "Coco Bana" from time to time and I've had NO IDEA what in the world that was. Today she saw something at the dollar store and said "Coco Bana, Coco Bana!" and was pointing frantically. I was so excited I pushed the cart closer to her point and sure enough, there it was...a Kung Fu Panda coloring book, lol.

We had her evaluation yesterday for preschool. We still have to go back in a couple of weeks for a follow up, but I was glad that she stayed very true to her typical self. They seemed extra impressed that she was able to amuse herself so well, which I thought was funny because they had her play in a room that was FULL of toys. Of course she had to check out everything! It was a little embarrassing and out of character for her to have answered this one question...
They were taking things out of the pretend fridge and asking her what they were. They got to this white bottle that was presumably suppose to be milk (though she doesn't drink that and it didn't look like the gallon-container she would be use to seeing in our fridge) and when asked what it was Lily responded with "Beer" LMAO now, but it was quite embarrassing, especially since we don't drink Beer in our house and she's never even said that word before! I assume that will be the first of MANY embarrassing moments.

8-16-09

Just wanted to update on a few cute things Lily has done today. This morning the hubby told her "Good Job!" and she turned around and said "good job, give me five' and ran over and gave him a "low five", it was very cute. Later Lily was playing with her stuffed dog and was pretending that it was giving her kisses and she said, "aw, that's nice"
In the tub she was playing with her Dora toys and she was talking with them and making them talk back! She was saying "Do it again?" with Dora saying "Sure!" and then of course she was talking with Boots as well and making all kinds of commentary. Lily is taking speech by storm and I am loving every minute of it!

Lily Clip

Here's a clip of Lily trying desperately to swim after the camera so she can take a look :)

8-13-09

Lily of course, continues to do very well. Her speech is, in my opinion, remarkable for how far she's come in what I feel is a very short time considering the obstacles that she has been able to overcome. Yesterday I put her on the phone with my sister and told her to say "Hi Aunt Sonia", not only did she say that, but she added, "How are you, how are you doing?" I was floored to say the least. The other day we were washing her hands and she said "Too hot! Colder!" We were at the pool yesterday and before we left she continuously said "Bye" while waving to a group of teenage girls, (who sadly didn't even look up at her) but it was just another moment where she didn't need to be instructed as to what to do in a social situation.

I have kept Lily on her medication without altering it, even if sleep has been effected. I'm finally back to sleeping in my own bed!!! This has been a huge accomplishment, but also a very necessary one (Lily is a very "active" sleeper). I would not have been able to do it without Lily being on the trazodone though.
Lily still wakes in the night, sometimes putting herself back to sleep after some babbling, sometimes staying up for 2 or 3 hours. But when she has been up she does understand that it is time for bed, but sadly she just isn't tired. I try not to get up with her (been having the hubby do that if necessary, she seems to get too excited when she sees mommy...oh darn, lol).

Lily's been tantruming more often if she doesn't get her way, one typical two behavior I wouldn't have minded avoiding. Part of it is our fault. When she began being able to tell us what she wants, we would give it to her. This really helped reinforce Lily's drive to continue to learn and push herself. There comes a time though, that she can't always have ice cream.

In just two short months our two-year-old, will be a three-year-old. Seems so hard to believe!!
Next week she will have her evaluation for preschool. I really feel that she is ready for school and would greatly benefit from it. Depending on what our school options are, I may end up putting her in a regular classroom and tell them that she has some speech delay. At this point, I would be surprised if anyone would mention anything to me that would imply that she had any other difficulties other than some developmental delays. Lily doesn't understand a lot of basic questions yet, which may raise a flag, but other than that she's coming into her own.

8/7/09

Lily has been doing great so far, now that we have her back on her meds. I don't know how to taper her off them without putting her through hell, so for now I'm keeping her on them. She has an evaluation in a couple of weeks to test her for preschool and I really want her to have a placement that fits her needs. We can't afford for her to be having an "off" day, otherwise we could get a bad eval. I want to make sure that she is placed where kids have a higher skill level than her so she can learn from them.

Lily is talking up a storm now, though she still struggles with being understood sometimes. She's really trying to overcome her apraxia. She's been able to say big words now (earlier this week she said "I'm accomplished" and today she said "Madame Blueberry") and is starting to say a lot more spontaneous commentary, like "Awesome!" Now sometimes she will actually call my name to get my attention before she says something. The other day when we were at the pool she wanted to hang out by a group of teenagers, so I let her for a few minutes and then swam over to relieve them of her and she pointed at me and said "my mommy" and looked at the girl she had been sitting next to, as if to introduce me.

I've been excited about a couple of things that are starting to emerge for Lily. I've been trying to teach her the concept of "where" as in a location (friend's houses, home, the pool, the store, etc.) Whenever I would ask her "where are we" she wouldn't understand the question, but last week she answered me as I asked her when we got to my sister's house, she said "Aunt Sonia's House!" and the other day I said the same thing when we arrived home and she said "Home!"

I've also been trying to teach her "what do you see?" so she can point to things outside that she sees and share them with me, as I often do with her. She's starting to grasp that question as well. It's difficult for kids on the spectrum to understand "what, why, where, how" among others, but she'll get there.

I've been wishing for the time and energy to do more updating. Lily has not been doing well on her new medication lately. Lily's body make-up has always been different than the typical (big surprise). With her, it generally takes very little to effect her, but on the flip side she gets use to things quickly as well. We started her off on 25mg of trazadone and though it did not help her sleep for long, she woke up saying "Happy, Happy!!" and was in a great mood just a few hours after taking it. Since it is an antidepressant, antianxiety medication, it really did it's job. The problem was, every 5-6 days I would have to increase her dose for her to stay level, otherwise her body seemed to go into a depression, as if she is going through withdrawls. Increasing her dose has been fine. She's been doing well and sleeping most nights (she has been averaging 6-8 hours). Unfortunately, she is at the most medication that she is allowed and since I can't increase it she has been completely miserable. She's been crying ALL the time and telling me that she is sad and she's not eating or sleeping well at this point. I have no choice but to wean her off of the medication, so we started to do that a couple of days ago and it has been even more of a nightmare. Now with the lower dose she's not sleeping and is feeling so awful. She comes to me for comfort that I can't provide. I can't change how she's feeling on the inside and it makes me feel horrible. She's been especially clingy lately and gets upset if I go or am gone for too long.

On a more positive side, Lily has been able to say more words (though just recently with the depression it has decreased). Last week we went swimming and she told my sister "Sonia pool too" because she wanted my sister in with her, but my sister didn't have her suit on so she couldn't comply...so Lily said a very forceful "IN". She has been using more words together. Instead of just saying 'again" for things, she'll usually say what it is as well, like "Word World Again", so I can play her show over when it is done. I also heard her say 'I kick it" as she was kicking the door. She has been "showing" me things on her own lately, which is new skill for her. Typically children start to do that by 12 months. We're trying to improve her joint attention, which has been difficult. I was hoping once we got her sleeping that we could start some new therapies to help with that, but it seems I'll just have to wait yet again, at least till she's back to her regular self. I spoke with the neurologist office about giving her some medication that is strictly for sleeping, so if I can get that and it works, that would be great...so that's my new prayer.

7-12-09

Lily loves to hang out by the pool!

Here is Lily trying to sing the song "Poker Face", one of her new favorites:


Lily has been FINALLY getting some rest. As a result she is flourishing even more. We're still not on the best schedule, she goes to bed usually between 12-2am in order to ensure she will sleep through the night, but we're finally making some progress! Her new medication for sleeping has been allowing her to actually get some DEEP sleep, which is very new to her. It scares me a little because she really is out for the count and her breathing seems really shallow but she wakes up feeling refreshed and happy...what a concept! She is really talking a lot more and we are really excited about all her progress.

6/25/09 update with pics

Lily is doing wonderfully. We had another visit to her neurologist on the 15th. She informed me that Lily's sleep issues (as well as apnea episodes) could be a result of low Ferritin levels that showed up on her bloodwork. Her recommendation is to bring up Lily's Iron levels. It's possible that Lily may sleep better once her numbers get better, so we've put her on an iron supplement, but it could take awhile for us to see any improvement. She recommended that we put Lily on a "sleeping pill" (Trazodone). This medication is typically used as an antidepressant, antianxiety medication, but is sometimes used to treat insomnia. From what I understand it is not approved for use in children or adolesceonts. It can also take some time to build up in your system before it starts working (about a week).

I was a little concerned in giving this medication to Lily. Part of me says, trust the doctor, but the other part of me says, trusting doctors is what gave Lily autism, so I'm leaning more on trusting God to give me all the "mommy instincts" that I need....so Lily's been on the medication for a week and is doing fantastically on it. She's still not sleeping regularly, however, this medication has turned Lily around in SO MANY WAYS. It's been a great gift. Her speech is remarkable and she is just SO HAPPY. From the very first dose she was a different child. She actually walks around saying 'Happy, Happy!" as if she has never known what it felt like before.
She is so much calmer and is able to relax and enjoy small things. Her attention is better and she seems to look at things differently, as if she is seeing the whole picture now instead of just pieces of it. I am so enjoying her joyous mood! She's not like that all the time (who is) but she definately is feeling better than before and it is making her progress so quickly. I'm not sure if the neurologist secretly thought this medication might help in other ways or not, but it has been wonderful. Lily has not climbed on anything except the climber that we bought for her...this in itself is a HUGE thing!

We went to speech therapy today and her therapist IMMEDIATELY said "this is NOT the same girl, what did you do?!!" I told her and she said that she was very interested in calling the neurologist because she just could not believe how different she is. Her eye contact and facial expressions are much more animated and she really has a greater desire to interact with others. She's able to speak so much better that the speech therapist said that when she gets tested again she may not qualify as delayed enough to receive services (if we lived in hillsborough county, pinellas apparently has higher standards thankfully).

Lily has really been able to get her feelings and wants acrossed for the most part. Last weekend before I left for work I told Lily that I needed to go to work and she slumped her shoulders down and made a sad face. Then she held onto me for dear life and said in a sad voice,"cry". She was such a big girl, no tantrums or actual crying, just an understanding that I had to go, but her wanting to let me know she didn't want me to.

The other night Lily was saying "House" very adamently. I asked her what she wanted and she said 'bye, bye", brought me to our foyer, pointed to my shoes and said 'shoes on". I told her she needed shoes as well, so she put her shoes on, picked up her diaper bag, said "bag", handed it to me, said "car keys" and "bye, bye" again as she opened the door. Unfortunately, it was 11:30 at night. I'm not sure she was expecting it to be dark out because as soon as she opened the door, she just stood there, lol. We went for a walk around the building and she pointed to the pond and said "water" and pointed up and said "sky". I'm still not sure just who's "house" she wanted to go to, lol.

Tonight a friend of mine babysat Lily and I was able to drop her off and Lily just gave me a wave and said "bye, bye! Love you!" It was the most wonderful feeling! Before we even went I asked her if she had wanted to go to her friends house and she remembered who it was and got very excited and jumped up and down and quickly got ready to go (that's another amazing thing). She usually will mimick my animation and get excited to go places but only because she's excited for "something" that she thinks will be fun, never anything specific. On the way to the car she said "Megan's House!!" and was giddy over it.

Lily still has a ways to go, but I could never have imagined how fast she would progress. Every night we pray for her to continue to astound us, and she does! Everyday is a gift and there seem to be more and more 'highlights" to my days. It's bittersweet though when I think of other families who aren't as fortunate to see such fast progress. It's really heart wrenching to me that there are other children struggling much more than Lily is. I only wish that weren't so. I fail to understand why that happens and what can be done about it. I know how truely blessed we are and I don't take anything for granted. We all celebrate small victories.

6/13/09

Well it has been quite some time since the last post. We've been very busy with lots of different day to day things. Since the last post we've had a visit with Lily's DAN Dr. which was promising. Her urine and stool tests came back better than before, but still a lot of yeast. We changed antifungal medications (for the third time). Since stopping the last antifungal Lily has really improved in several ways. She is much less hyper, has a greater attention span, etc. That antifungal really did a lot to her system. I hate trial and error, but there really is no other way.

Lily has not had any seizures that I have noticed, though shortly after the last post she did wake up gasping for air twice during one of her naps. This could be sleep apnea or seizure related. I happenrd to be looking at her when she did this, both times crying afterwards but able to get right back to sleep. I don't know how often she does this, but she does often wake up crying in the night (and always has).

We've cut down on her therapies, because at this point I believe that her sleep is her best medicine for improvement. For whatever reason her body doesn't seem to let her sleep more than 3-6 hour stretches, which she gets usually in 2-3 stretches in a 24 hour period. I hate waking her everyday to go to therapies. I think we will ultimately be doing just tuesdays and thursdays. Lily now says "mine" and seems to understand the consept. Lily has been talking up a storm and is putting 2 and sometimes 3 words together on her own. She still struggles with the apraxia but is able tell you things she wants and can be understood by mommy and daddy best, but her clarity is getting better everyday. Lily is routinely telling me "no' and protesting lots of things as two year olds often do. She is tantruming more for stupid things likes diaper changes, getting dressed and she HATES to take a bath and cries quite a bit in protest.

Lily is doing great in the pool and that seems to be a good, fun way for her to strengthen her core. We spend time in the pool most everyday. Lily's imaginative play has also increased and it is so fun to watch her. Her therapists continue to be very impressed with her progress.

I'll update more soon and put some pix up within the next few days.

5-21-09

Lily had her eeg a couple of days ago. It went better than expected since they let her watch a DVD on my lap after she was hooked up (THAT part was a nightmare, poor girl's face, neck and chest are full of broken blood vessels from screaming and straining while she was held down). It was all done within a half hour. They said they got some really good pictures (whatever that means). No seizures in that time frame. The neurologist seems to think that Lily might have a sleeping disorder where she wakes up paralyzed. I'd say that's consistent with what I have seen (I've actually walked in on her screaming and seemingly unable to move, which I had then perceived as some kind of seizure). I can imagine that would scare her to hysteria and explain her behaviors, but I'm also thinking there must be something else going on, as she takes 2-3 days to recover from these episodes. From what I've read, sleep paralysis is common and supposedly doesn't do any damage. ?????

The neurologist mentioned also putting her on some seizure medication to see if the behaviors I'm seeing during the day will go away, as a way to test if those are, in fact, seizures. I have mixed feelings about that. As her mom, I'm fairly certain that she is having those during the day (though it's been more sporadic). But I've also noted that her daily seizures have usually followed a "big seizure" (which now I know is probably not one). So does this paralysis somehow neurologically trigger these seizures, and if so, if we can somehow cure this sleep disorder will it make the seizures go away?
I guess I'm getting ahead of myself. They took more blood, AGAIN (poor girl has had more blood taken from her than I think I have in my life) and I guess we'll go over the results at the next meeting in a few weeks.

Here are some of Lily's latest:

• Now Lily says "Pip, Pip, Peeyay!" for "Hip, Hip, Hooray!"
• She can say "I love you"
• Her favorite show is the 'International Super Spy' Backyardigans episode, and I've actually heard her say 'International Super Spy' (they sing words in the show, so she does too. It's easier for her to sing than for her to talk, because it's slower and gives her more time for processing), but darn that apraxia I haven't heard it again, but she does say 'super spy'.
• Lily loves "Bob Bob", which is "Sponge Bob". Not something I like to encourage (I can't stand sponge bob) but when she makes a specific request for him after I ask her what she wants to watch on tv, it's hard for me to deny her since she rarely makes such specific requests.

We had our yearly followup with Early Steps and her service coordinator said that Lily has made the most progress in this past year than she has ever seen! I know that Lily is doing wonderful and really achieving great things. Despite her struggles, she perseveres. She inspires me. Isn't it suppose to be the other way around? LOL

5/13/09

Well, last week was horrible. It's hard to keep up with updates, but since we're up (it's 5am, Lily woke up at 3:45) I figured now would be a good time! Lily had another seizure on the 5th and it reeked havoc on her system. I wasn't home for it, but anthony said she was actually shaking on the couch for that one. Anthony said it lasted 9 min. The days that followed did not go well. She seemed to regress a lot in her speech and demeanor, then out of nowhere her speech improved and greatly surpassed where she was at.

She says a lot more spontaneous words now and can even sing "Baby Balooga" now! She now also can count to 10 on her own (she still skips #1) and can sing the alphabet (she still skips alot, but has the idea). Today I pointed to different objects and animals and she surprised me by identifying them for me (verbally). She seems to really be finding her voice, she's trying very hard. And FINALLY she can say "mom"! It sometimes still comes out "Mob", which is better than "Bob". She is constantly singing along with her favorite tv shows and even doing little dances that they do while she is singing.

We taught Lily the answer to "how old are you?" she now says 'two", but we made the mistake of trying to teach her "what's your name' at the same time, because she'll either answer "two" or "name", but we're working on it :)

Lily is a total fish in the pool and can literally swim (with her swimmies) all over the pool and get out on her own via the ladder as well. She now really loves the pool and actually tolerated getting splashed in the face when the other little kids were jumping in. She enjoyed their company so much that she just kept that smile on her face and took it (several times). Before we went to the pool we asked her if she wanted to go and she said "pool, pool, pool!!"

Over all some major progress. She's been sleeping better if we put her to bed between 12-2 am. Tonight she went down at 10:15pm, which is why we are up. Won't make that mistake again anytime soon!!

Lily is 2 years and 7 months today. In 3 months she will be evaluated to see what preschools she qualifies for. Then I can check them out and pick one. I went to a seminar tonight on Sensory Integration Dysfunction. It was very interesting. I knew a good portion of the information, but of course there were things I didn't know as well. For those of you who don't know what that is, it's when the brain does not properly process the messages that the body is receiving (that's my own simplified definition, but there's a lot to know about it because it effects every kid differently). This is most often the reason why kids need occupational therapy. Lily requires more "input" than most kids. One example would be when she does her spinning. It takes her a million times longer than me to get dizzy. Her brain does not process dizziness. Her body responds to the spinning (by throwing up sometimes) but her brain did not register that there was a problem. Most people would get dizzy and stop, which would prevent the vomiting, but not Lily. Of course that's just a small example. She has alot of other issues that are addressed at OT as well.

Next week we see the neurologist. PLEASE PLEASE PLEASE, pray that they will find something on the hour long eeg that they will have to do so that we don't have to do the 24 hour one! I don't want that trauma for Lily if it can be helped.

Thank You!

5-1-09

We've been very busy, but we've been sleeping better! Unfortunately Lily has been having a lot of seizures lately. She had a rather big one last week on the 20th. The past few days she's had quite a few of her smaller ones. Yesterday was perticularly bad. She had so many I couldn't even keep track and she was totally miserable. She had them before, during and after her therapies. One of her speech therapists got to watch one. She felt compelled to time it, I think it lasted about 4 minutes or so (I didn't ask, I was too busy trying to comfort my girl). She always comes out of it really upset. I called today and made her an appointment for a neurologist. We get to once again have another hour long eeg before they'll see her. My anxiety is in overdrive in anticipation of the horror that will be that hour.

Lily's speech has improved a lot. She has a much easier time communicating her wants now. She is now doing this rambling thing where it's like she is talking her own language and every now and then you'll hear a word you recognize. It's very hysterical to me. When Anthony was letting her out of time out she went on and on like she was trying to explain to him why she had felt compelled to once AGAIN climb on the entertainment center. You'd hear jibberish, then K? then more jibberish, then K? Then yes, then more jibberish. She's very good at singing her songs now and fills them in better than ever (when she wants to, which is another story entirely)and even does the hand signs when appropriate. She knows most of her colors now and all of her body parts (we finished up with wrist, ankle, elbow, etc.) She was saying the word "cock' for awhile and would go around singing it. We couldn't figure it out until this morning when she saw a duck quacking on tv and started saying "cock, cock, cock" for "quack, quack, quack".

Lily continues to do well with her alphabet and is now learning her numbers (thanks to her Leap DVD's) Lily is swimming all by herself now (with her swimmies). She can swim to the middle of the pool and back now and really enjoys floating around. She can't say the word cold but does say 'brrr" when she needs a towel to warm up :)

Lily is officially two now. I say that because she refuses to listen or follow any kind of direction, even though she CLEARLY knows what you are asking her to do. She gets this look on her face that says "who are you kidding?" followed by a shit-eating grin (pardon the expression). It's very frustrating. Today at the pool, my sister sang the ABC's and ended it in french. Lily looked at her and said "no", then proceeded to sing the song the 'right" way. It was very funny. She's really turning into miss independent, I know better attitude. I guess that's what this age is about, I'm just hoping it goes away soon!

4-16-09

Well, per usual Lily is doing well, though not sleeping (which is also per usual). Last night she FINALLY went down around midnight, only to wake at 3am as if she had a full night's sleep. She wouldn't go back down until 7am, which meant I had to call and cancel her therapies...again. She slept until 1:45pm and it through off the whole day. I'm wondering what tonight will bring, she went down around 10:20pm.

Daddy is still recovering from shoulder surgery he had last week, and will be in recovery for awhile. He will be home with us for at least another couple of weeks. I think Lily is really enjoying having him around, though she has a hard time understanding why he can't pick her up or dance with her.

Been awhile since I've updated, I will highlight a few cool things:
Daddy was talking to mommy "in code" by spelling out the word apple, which afterwards Lily promptly said the word outloud.
Lily is sounding out words she sees, STOP on the stop sign, DOG, and everything else she sees.
When Lily asked me for her BABA (bottle) she followed it by a dramatic B-A-B-A (several times) as if I needed further clarification as to what she was asking for.
Her speech is starting to become more clear on some words as her sound for "e" is emerging.
She now knows more colors (red, green, white, yellow, blue) we're working on others. I can ask her "what color is this?" and she'll tell me, but her speech is soft and slurred when she isn't confident, but mommy still knows what she wants to say.
Lily has become quite the snuggler, and I couldn't be more happy about that!

Lily's attention span is great now. I am so shocked when she will actually just sit on the couch and watch tv! Her new favorite is the show "Word World" that plays on PBS.

We went through a yeast "die off" period last week. Her antifungal medication really helped with several things. She doesn't seem to have any of her stimming behaviors anymore, though she comes up with new variations every now and then. I think it's mostly her just being two though. Lily's eye contact seems to be right on now (unless she's busy with something).

I plan on having her reevaluated soon. I think she's come so far but it's hard for me to tell on some things because of the speech apraxia, and I know I'm biased since I'm the mom anyway. I don't want to underestimate what she needs. I have to plan for her preschool and pick the right one for her. She'll start when she turns 3. She's come so far in the past 6 months, there's no telling where she'll be when she's 3, but I have a meeting next month for her transition meeting to discuss preschools and such. I need to check out which schools are available, what they offer and where she would fit best (same as all parents, really). I feel like this will really be a hard decision and if I have her reevaluated it might help me to assess her strengths and weaknesses and make the best choice for her. I never knew being a mom would be this intense!

pics and clip 4/4/09

Lily is doing great. We're working on some things to help her to sleep at night. No seizures since 3/23! We get her blood work results on monday. Not sure what to expect with that. Yesterday Lily picked up my keys and actually said "keys". She is such a bright and shining star. I love to watch her continued improvement everyday! She now points to all letters of the alphabet and can make almost all their sounds. Yesterday we went to Barnes and Noble and she pointed to each letter and sounded out every letter of "thank you" that was on the trash bin. She LOVES her letters!

3/27/09 Horray!!

There's a lot to report, but the overwhelming message is that Lily is doing AWESOME! We started the anti fungal medication yesterday (to get the yeast out of her system). We have seen immediate results! We were warned she might turn into a "devil child" while she is detoxing, but so far all we have seen is a HUGE spurt in her speech and overall interaction. Her attention span also seems to be improving. Today she has said all kinds of words, and instead of her usual portion of the word, she is actually able to say more whole words now (not to mention spontaneous words)! This was my hope for this particular medication and it is working!!!

I am very excited and have very high hopes for the immediate future. We started Lily at an additional OT office a couple of weeks ago because I was worried about insurance coverage (we are at our limit for visits this year and the new office cost is covered by the state). I spoke with our insurance and supposedly the new autism bill kicks in after our visits are capped, but they couldn't give me anything in writing to guarantee this, so for right now I'm going to wait and see if they will actually pay. So for now Lily is having OT 5 times a week (4 hours). I really love the office that she has been going to, but this new office seems to offer some great things as well. I think the combination of the two will be wonderful for Lily and she really seems to enjoy going there.

Lily went 12 days seizure free. She had a more intense seizure on 3/22, waking from a nap at about a million degrees, inconsolable for 10-15 minutes followed by her turning ice cold and then her temperature went back to normal. She had a much milder seizure the following day, but none since. I have been really racking my brain to figure out what is the trigger for her. I'm thinking it's exhaustion. She doesn't get enough REM sleep, because she's always up in the night, except following a seizure. When she's having seizures she sleeps better because they wear her out, but then they start again when she's not sleeping as well from not having them. We started giving her melatonin during the day for naps, so she now takes close to 3 hour naps. I think that probably really helped to keep them away. The day she had her seizure she was in the sun playing for 2-3 hours at the pool. I'm thinking that maybe the sun wore her out a little as well, I know everyone there really felt as though they could use a nap!

We started Lily on magnesium, to help her metabolize her B6. It is suppose to help her sleep so I've been giving her some at bedtime but it makes her restless instead. This shouldn't be a big surprise to me, since she had the same reaction when I increased the epsom salt in her bath (it also has magnesium). So now I will alter when she gets that during the day and see if that helps. We tried her MB12 shot again, at half a dose after her 1 week increase of folic acid, but she still did a lot of spinning, so I haven't given her any additional yet.

All in all I must say that Lily is doing so fabulous. She really is losing her diagnosis. Children CAN recover from autism (though not all do), we are just so blessed to be able to watch it happen to our little girl.

3-19-09

Lily is really so much fun to be around. Her eye contact and social interaction have improved so much that I would think it would be hard to distinguish her from her peers in those regards. She does however still have her autistic traits. She spaces out and it is hard to get her attention, particularly when we are outside. She is still spinning and doing her "eye thing". Other than those things, speech is her biggest hurdle and really sets her apart from the rest of her peers. It hurts me that she cries to me and can't let me know what's wrong, but she really tries hard to get her wants communicated. I have to keep reminding myself of how far she's come and how fast. The past 6 months have really been a testament to what the Lord can do.

Lily has been bustin' a groove more than ever. I really think dance will be a big part of her life. It's a way for her to be able to express herself, since the words haven't developed yet. Today she did something AWESOME. She made a train out of her blocks and pushed it along the floor and said "Choo Choo". Pretend play just can't be taught, and this is a very big milestone for her.

Lily has been doing pretty well with a fork. We've been doing the "time out" thing. She seems to understand the concept. Yesterday she was in the refrigerator (again) after she had already had a warning (she just likes to stand in there for some reason) and when I started to yell at her and she immediately grabs a pudding and hands it to me, like "I came in here to get this" and so I ask her if she wants to eat it and she says "ssss" (that's her yes). She doesn't even care for pudding that much, it was a left over from the one she didn't want earlier! But she ate half of it anyway, acting as if that was her plan the whole time. (it did get her out of the time out I would have put her in!)

We went for more blood work a few days ago. We'll get all the results on the 6th.

3/12/09

Lily has been sick with a cold lately (us too) so her whole schedule is off (not that she really had one, but it's been wackier than usual). I've been contemplating getting her evaluated again to see where she is at since she is doing so well, but I don't think it would satisfy anything except my own curiosity. She hasn't had many seizures lately, thankfully.

We brought her to see the wholistic dr. again on 3/9, and he explained all of her test results from her stool and urine. It was a lot to take in, and I'm still trying to sort things out. They took some blood too and will have to take more next week to satisfy all the testing that is needed. They did find some yeast, so we will be putting her on some antifungal medication, as well as increasing her folinic acid so that she will better tolerate her MB12 shots. I may eventually try the diet with her, but we'll see. My first goal is to get her off the bottle, we'll see how that goes.

She is back to sleeping really crappy now. Last night she was up from about 2:15am to about 5:45am. So she slept from 8:15pm to 2:15 then from 5:45 to 10:45. Total sleep time is ok, but not an ideal situation! She went down for a nap today at 4:45pm so she won't go to bed till late tonight, but at least if she goes to bed late she has a better chance at sleeping through. Yesterday we did no nap (because she got up at 11am after another similar night) and it didn't help her sleep at night. We've tried every schedule there is, nothing seems to work...at least not for long. She was funny last night though. I was soooo trying to sleep and she was doing everything she could to get me to stay up. As I drifted in and out of consciousness she would open my mouth wide with both hands and hold it open with all her might. She would roll on me, climb on me, tickle me, and the best one...kiss me (she woke me up with 5 in a row!). She really does try to fall back asleep, but even with the melatonin it is useless.

She hasn't had many seizures at all this week. We've been home a lot more though I'm not sure that has anything to do with it. Though maybe the lack of seizures has been triggering her horrible sleeping pattern? When she was having them a lot was when she'd sleep well. I guess that makes sense. I have to make her an appointment with a neurologist, and more than likely have a 24hr EEG done. I want to avoid that at all costs. The hour long one we did was the worst hour of my entire life, and I could just not imagine doing that for 24hrs, though if we could capture her sleeping would probably be a good thing.

Anyway, Lily is doing very well with her eye contact and experience sharing. She really seeks out my company. She's sought me out before to help her with things or to use me to get what she wants, but lately she has just been taking me to where she is to just sit with her. She is doing well on the potty, though it'll be a long while before she's potty trained. She amazes me daily with new skills and understanding. The other day she put away all the silverware, all by herself. She has been throwing appropriate things in the garbage (on her own) and can follow two step directions usually fairly easily. She still hasn't lined up any more toys!!! She has shown no interest in any of her figure sets except for her mickey ones that she plays with in her Mickey Club House (which she uses very appropriately). She has been spinning more and dragging her head across the floor(that's a new one) and of course is still looking at her hands a lot. She seems to substitute one action for another. All in all, steady progress.

3/4/09

Lily had a pretty good day today. No nap, but not crabby at all, except for the usual tantrum here and there (as is with any two year old :). I was wondering why she had such a good day with no nap and then it dawned on me...not one seizure today! Then I tried to think of what the difference might have been but I couldn't think of any. She was up from 7:15am to about 8:30pm-ish and was not crabby and ran all over the place the whole day! What a difference from yesterday (she awoke from her nap with a small seizure and was a huge challenge the rest of the day). She either has good days or bad, there doesn't seem to be much of an inbetween. One amazing thing I did notice this week is that she didn't have any interest in lining up her toys! This has been such a staple in her daily routine since as far back as I can ever remember and now, nadda! She has been spinning more, but when she goes to OT or to the park she seems to be ok with that.
Lily can now count to three (sort of). If you say one, she'll say two and a few times has said three but mostly when you ask her to say three she'll say go, lol.
Please keep praying that the seizures go away and don't come back!

3-1-09

On wed feb 25th Lily had a small seizure while we were in speech therapy. The therapist definitely thought something wasn't right, we both were thinking the same thing. It didn't last long but Lily seemed very tired after therapy (she had just woken up and had slept well the night before) and was out of sorts the rest of the day, wouldn't take a nap and was generally very crabby. It's hard because I really just wanted to bring her home for the day, but of course, I had to bring her to OT.

We started her MB12 shot on thurs. the 26th. Results: waking up for the day at 5am friday, 5:30am sat. and 5:10am sunday morning (today). Napping has been at a minimum, if at all. She wakes up in good spirits, seems more refreshed....it's just FAR too early! But she did sleep through about 9 hours each night. Maybe I'll try to put her down a little later so she sleeps till 6. She has been spinning like crazy, which she hasn't done for a long time. I think she had another seizure on friday and Anthony said she had one today (possibly 2). Due to the spinning we upped her folinic acid to two capsules starting yesterday (that is suppose to help I guess). We are going to stop the shots for the next week and keep on her increased dose of folinic acid and then maybe start again. (writing this info is really just record keeping for me).

I bought her some new books and VOILA, she actually will sit and listen to the story and seems to enjoy my reading to her. This is a complete first for the girl who is a speed page turner. I have actually had to tell her to turn the page some of the time! There really does seem to be something to this theory of new stuff = showing new skills. She doesn't sit and listen to stories with her thousands of other books (and hardly ever did), just the new ones.

We have been having Lily watch The Letter Factory(a DVD that teaches about the alphabet and the sounds that each letter makes) and she has been loving it and participating in a lot of the letter sounds. She's also really getting good at acting out parts of different shows or movies that she loves, especially Madagascar 2. It's really very comical.

2/24/09

Lily has been doing well in all areas (unusual, but true!) She's sleeping and eating better, understands more, follows direction more, is speaking more, etc. Anthony has been working with Lily on "I love you", and always says "Daddy... loves... Lily" (with some gesturing). Well the other day he said "Daddy...loves..." and she pointed to herself and said "Lily". It was very cute.

She's always showing increased interest in the potty and seems to be beginning to understand that she has to take her diaper off to use the potty.

Lily is singing up a storm (she often sounds like someone singing a song who doesn't know the words so you just hear some mumbling) and the other day for the Mickey Mouse Club House theme said the "S" "E" part of m-o-u-s-e.

I bought her some new toys and sure enough, she is playing more appropriately with the new toys than she is her old toys! Go figure. She has been loving the new doll I got her that came with little accessories and she has been feeding it and putting it on the potty and trying to get the baby to play with it's little rattle, etc. I got her the mickey mouse club house and she was using mickey to work the buttons and levers in the house, go down the slide, etc.

She now takes her cod liver oil like a champ. We start her MB12 shots tomorrow. I'm a little nervous about it, I don't want to do it wrong and I don't want it to hurt her. She a pretty tough though and it really is tiny shot. I'm excited to see what improvements she'll make from that, if any. She'll get that every 3 days for a while.

We had another RDI meeting tonight. I'm really learning a lot through that and it keeps me in check a little bit to where Lily should be. I see her so much further ahead now, but it reminds me that she has a whole lot farther to go yet and keeps me motivated to work with her on things. We are being given suggestions on activities to do with her and how to interact to develop her social skills more. It has been really beneficial for us.

2/20/09

Lily continues to do well, as usual. I've been thinking for awhile that she has seizures from time to time (silent seizures) because there have been times that she blanks off for a minute or two and has a blank stare that I can't change and then just kind of snaps out of it. Since the EEG came back negative I haven't thought much about it, even though I don't think they could have ever gotten an accurate reading while she screamed bloody murder for an hour. A few days ago I think she had a mild one in my arms. She was being very cuddly and as I was holding her her limbs began to jerk. Not hard, but it went on for more than 5 minutes and during that time she was whimpering. Afterward she was very tired and she passed out on the couch (a first for her and completely out of character). There's really nothing that can be done for it, so I'm trying not to concern myself. Meds would reverse all of her progress and would alter her state of being so at this point since it's not bad we'll likely leave things alone. I really wouldn't want to put her through another EEG, it was so traumatic for her. I just pray that if she is having seizures that they stop or at the very least remain mild. It's very common for autistic kids to also have seizure disorders and my aunt is epileptic but I'm hoping everything is just a coincidence. I'll talk to her doctor about it in a couple of weeks, but I don't think there will be any action to take.

A couple of days ago Lily walked into the kitchen, pointed to a banana, and said "nana". After I gave it to her she ate half of it! The ironic thing is I think she just asked for it because she could. She wouldn't touch bananas before that and hasn't since, lol. Shortly afterwards I was trying to feed her some dinner and she tried to push me away and said "oh" (which is her "go"). So her communication is bitter sweet at this point. She's really starting to be a great pointer now and will point to EVERYTHING that she wants.

I've learned/realized from one of her speech therapists lately that as Lily needs new stimulants as her skills grow. She will not play with old toys the same as she will a new toy. For example, she has baby dolls at home that she could care less about, but when she was presented with one in therapy she couldn't get enough of her and was feeding her and cuddling her and putting her to bed, etc. She will play with her toys the same way she always has, but will only use new skills on new toys. This makes sense to me. We've been trying to curb spending so I haven't really bought her any new toys for quite some time I was use to getting her things every week. It's hard not to when you see something that might spark something in your child so that they will learn and grow. We have to engage her in more play with toys but she won't do that with old toys. She's just going to want to continue her patterns. So I'm going to have to get creative and come up with games that we can play together but creativity is certainly not my thing, so it's gonna be hard. I'm open for suggestions if anyone has any, otherwise Walmart will continue to get more and more of my money, lol. We really need to step up her pretend play because it will really help her speech develop faster.

Lily's eye contact has gone down quite a bit. Her speech therapist says that it is because she no longer needs the visual with the audio for processing. I guess it makes sense, but I'm still not happy about it. I've been making her look at me when she has a request but sometimes she will throw a complete tantrum because she doesn't want to. It almost seems really hard for her at times. I need to think of creative ways where she doesn't have a choice while at the same time creating an environment where I don't have to ask her to look at me. Fun stuff.

I'm realizing more and more how much Lily really loves music. She sings, hums, dances (or sways if she's in the car) and tries to play her own music with her instruments. I really need to look into some music therapy for her I think. She's so happy when there's music playing.

Today I went to use the bathroom and Lily followed me so she could go too. It was really cute, but she still doesn't understand that she needs to take off her diaper before sitting down to go.

Lily's been eating a lot more candy lately and really needs some variety, but she's been taking her cod liver oil. I'm so proud of her! I hope I'm not jinxing myself, but she has been sleeping better. Though I had a hard time opening her bedroom door the other morning because she was sleeping propped up against it, lol.

Lily made a clear choice today for the first time (this was a very big deal for the girl who wants it all!). She wanted to bring her toys and her blanket into the office and I told her she could only take one or the other with her. She took a moment, looked at both and decided on her toys. She left her blankie in the car.

2/15/09

Lots to update, so I will list some random stuff:
Lily is cutting yet another molar...need I say more? She has been eating a lot of Popsicles (and can even say popsi now) and her appetite hasn't been the greatest. She no longer will eat almost anything dairy related (except ice cream). Yogurt and cheese use to be her thing, now she will not have any of it. Funny how toddlers go through these phases. Now she likes poptarts and cereal. We've added Cod Liver Oil to her regiment of supplements. Needless to say she doesn't care for it (it's suppose to be strawberry flavored, but Lily's face tells me otherwise). I've had a hard time giving it to her, but Anthony did pretty well this weekend. I bought some treats for bribing. She's really into lollipops, and I gotta tell you I think she really deserves one after 2 teaspoons of yuck!

We had upped her Epsom salt baths to two cups, but she got really wired after a bath (it's suppose to do the opposite) so we cut it back to 1 cup and she's doing well with that. Her speech is improving, though never as fast as one would like. We are trying for two word phrases now. She is routinely answering yes and no questions, maybe 40% of the time, which is good for her. Now she can go to the fridge and look inside and I can point to things and ask if she wants some of this or that and she can tell me yes or no! She does the same thing with her toy cabinet when she is picking a toy, which is great.

We bought her the new Madagascar movie, which has been a HUGE favorite of hers. She dances around and wanted to watch it over and over. The other day when it was finished she actually said "again" and I asked her if she wanted to watch it again and she said "ya" (that's her new word now). She is getting much better at getting her point across, but still has a hard time when we have to tell her no for anything (complete tantrum). Since she can't ask why, I like to try to explain it to her automatically and it sometimes helps.

Lily has been using the adult potty every day now (1-3 times)! I put her on it if I think she might need to go if I notice her diaper being dry for awhile. Sometimes I'll ask her if she needs to go and she'll go right into the bathroom herself or else tell me no. I'm not pushing too much though. I'm letting her take the lead on that one, I'm just trying to guide her a little. She actually seems proud when she goes and wipes herself too. One time when she was done she made a great attempt at saying "paper" and pointed to the roll. I had to send in her urine and stool samples recently, so this whole potty thing really came in handy.

Lily is starting to be able to follow a point really well and for long distances too. We went to the playground the other day and we were at one side and I asked her where her sippy cup was and she was able to remember where it was and go and get it on the opposite side of the playground.

Lily is starting to label things a little. I tried to give her a banana and she said "nanan". She also was able to name one of the Dora characters in a book and said "Benny", which is huge for her not only because of the labeling, but because she has such a hard time saying "e".
Lily went to her friend's birthday party today. There were pony rides and a petting zoo and she had an absolute awesome time!

2/3/09

All things went well with the new doctor we saw. He is really great and I am very comfortable with him and everything that he is recommending thus far. I know he will play a great part in Lily's recovery. We are on a new schedule of things. Increasing some things I'm already doing, as well as adding some new. We go back next month for followup and will get some results of some testing then (I have to send in some "samples"). Also they will do a blood test when we go back.

Lily has been doing fantastic as usual. I'm excited that she will actually follow some direction now (when she feels like it of course). For example, now if I ask her to throw something in the garbage, she actually understands what that means and does it! Tantrums are becoming louder and more energized (I didn't think that they could have even done that!). She is routinely answering "no" (or "oh" as she says usually) in answer to questions. She has a harder time with "yes" but she manages it on occasion (just the "sss" part of course, with a big forced head nod). She is now routinely coming to get me by taking my hand to where she wants me to be, either to just be near her or to help her with something, yay! I've been trying to teach her to use her words (as best she can) instead of crying. The other day she started to cry about something, stopped herself and came and asked me for help. I was overjoyed!

Today she did NOT want to take a nap and took matters into her own hands....and climbed out of the crib. So we took the side off the crib and I bought a bed rail. So far, so good (it's 1am currently). She fell asleep during prayers (thank you melatonin!). She could still wake up, but I am thankful for small favors :)

And here is the grand part of the day.......Lily used the BIG Potty, all by herself!! She was stripped down to nadda in anticipation of a bath. She went into the bathroom and we assumed that she wanted to get in the tub, but instead she raised the lid and climbed up and went! We were surprised she didn't fall in!! It was a very proud moment. I'm just glad that she isn't afraid of the toilet.

Here's hoping she'll sleep through the night! I better get some zzz's while I have the chance.

1/29/09

Lily's separation anxiety continues to improve greatly. I'm so excited about her new found comprehension. Seems with a little notice and some explanation she does better at most things. I didn't explain a whole lot to her before because she was never able to understand, but finally she is understanding things now! We went to the park and she wanted to bring her blanket to the playground and threw a fit when I told her she couldn't. Then I explained to her that she was going to be playing on the playground and would need two hands to climb and that no other kids had their blankets. She then let out a little whine and put her blanket back in the car HERSELF. I was so thrilled! Today I had to do a similar thing with some toys I wanted her to leave in the car. Tonight, I told her that I didn't know where her CARS puzzles were, so if she wanted to play with them that she would have to find them herself. She went right to the cabinet and found her puzzles. It's so thrilling to me, though a little sad at the same time.

At playgroup today she did very well playing with the other children and listening to me as well. She has also been searching me out whenever she has a problem, which is fairly new.

Tomorrow we have an appt. with Dr. Berger (he's a DAN Dr., which stands for Defeat Autism Now). I'm anticipating a list of supplements to try and also some lab work being done in the near future. I'm excited about all of that because she has responded so well with the supplements that she has been taking so far, so I'm hoping for more of the same!

1-25-09

Lily has been doing wonderful. Her speech is continuing to improve, now she is able to do two sounds (one right after the other) with prompting. I’ve learned it helps to break up the word, like AAAA----PUL (for apple) and it makes it easier for her to say. She’s starting to say more without prompting. The other day she was trying to carry a bunch of her characters and couldn’t hold them all so she gave one to me and simultaneously said “ep” which for her means “help”. She has finally started to say “no” sometimes when asked to do something! I must be the only mom around here that gets excited when she tells me “no”, lol. I actually wish she would do it more often so I wouldn’t have to ask so many times!

Anthony taught her the sound “pssstt” so that has been her sound of choice recently. That along with snoring while pretending that she is asleep, lol. She knows what it means to be quiet and when you tell her to be quiet because someone is sleeping she will put her finger up to her mouth and say “shhhh”. She can also make a happy face when you tell her to (she laughs while she does it) and sometimes will give you a sad face when you ask. She can now correlate tired with sleeping, hungry with eating, and thirsty with drinking. Her separation anxiety is still improved, but still needs work.

The battle of wills continues daily, sometimes taking up to 20 minutes to get her from the car to my door (getting her out of the car takes the longest because she tries to crawl into whatever space is farthest from me and get into a ball to make it nearly impossible to pick her up). I try to look at her power struggle issues in a positive way. It means that she has a deeper understanding of who she is and what she wants and her stubbornness has been an asset to her so far. It’s so hard to remember that though! She is getting heavier everyday and it’s difficult to have to physically move her out of areas that she does not belong (on top of the kitchen table or counters, for example) over and over and …..over again. Or places in the store, or running right for that pile of dog poop! The scenarios that my day encompasses are endless!

We’ve recently had a lot of family visiting and that has really been great for Lily. Though she can get over stimulated if too much is going on, she really enjoys interacting with everyone and gets excited to see them.

I recently did a little video taping of Lily for my sister and noticed something that I thought was interesting. She was watching her favorite show (Yo Gabba Gabba) and they were giving directions on how to be a dinosaur (where to put your hands and so on). She was very good at following direction, but towards the end she paused what she was doing to get a closer look at the tv and seemed to have stopped listening and following direction, but had about maybe a 5-8 second delay in finishing what was asked. They had moved on to another clip and she turned around with her arms in position and roared like the T-Rex. I know sometimes it takes her a long time to process information, but this gave me a new perspective on her and how she may operate sometimes.

I bought Lily a set of Cars puzzles (she’s really been into that movie lately). They are 6 piece cardboard puzzles and there are 4 of them. She can now do them all by herself, even when given all the puzzles together. We have been playing more with play dough recently, but she’s still been snacking on it. Not sure how to stop that, as she doesn’t seem to mind the taste.