Wednesday, February 25, 2009

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.

Friday, February 20, 2009

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.

Sunday, February 15, 2009

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!

Wednesday, February 4, 2009

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.