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.