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!