Going...Going... Gone!

Yes, she is back on planet MM. **sigh**

I had just made that post Thursday morning how good she was doing. We went to lunch at I.HOP. She was a little stimmy before we left, wanting her Nana. We went & picked her up for lunch. She was doing her directions over & over. She ordered her usual. She got upset cause the lady (not our usual waitress) brought her a small glass of milk. 5 minute meltdown. She then ate all of her bacon & that upset her. Another 5 minute meltdown, but got her to stop by giving her the chicken off my salad. She then was doing her driving directions the rest of the time, along with shoulder shrugs & finger flicking.

As an aside to the above part, at the I.HOP we were at, the booths have see through glass partitions. There was a couple on the other side who kept staring, rolling their eyes & making comments. My mom wouldn't let me say anything to them. I so wanted to. I was frustrated and I just hate people who stare. It is so sofa king rude! I found a cool new statement & I want to make it on a business card so I can hand them out:

Keep staring cause that will cure her Autism and then we can work on YOUR social skills.

Of course, I will add a website or some info about autism. I think a shirt for her would be cool too.

When she woke up Friday morning, she was gone. She kept saying over & over "Do I write from the top to the bottom or the bottom to the top? Top to the bottom" for over 45 minutes. I worked Friday & Saturday, so she was with Mom. She said she was hard to engage, doing lots of stims. She keeps asking to go to Dog.wood (her school). Even though I am doing my best to make a good routine for her, it is not the same. It has only been a little over a week and I feel like I made a mistake. I should have fought harder for her ESY. I know it is only a week & I need to give it time.

It is just so hard to have the clarity gone and her routine messed up all at the same time. It was fun while it lasted. Off to do the Super Family Sunday thing.

Keep on Keeping On

She is continuing to do well & amaze. She transitioned back to her MDO (mother's day out) program easily. There were 2 girls there from last year that she remembered. She has the same teacher as well. They were amazed at how much she has grown & changed. I know I complained alot, but Ms. X really did do an overall great job in helping MM.

We finally got casted for new DAFOs yesterday. We are going to try a shorter one & see how it goes. I am excited & nervous at the same time. We also will (finally) be getting AFO socks! Woohoo! The ones with the big toe seperator. She has so much eczema from the DAFOs & I have tried all kinds of socks. Hopefully, the insurance will pay for them. If not, I will. We have to try.

Speaking of insurance, they are driving me crazy! They keep calling me about my hospitalization, wanting details. They are also driving me nuts cause we have had all of MMs appointments come up at once. As you all know, insurance is a pain! I am thankful I have it, thankful mine is pretty good, but boy is it work!

I've still got to get her some new glasses. I am not sure how I want to go about it. I might try the Zen.ni site. Or I just might go to Wal.marx, although I am trying to stay out of there.

My mom & I were talking about how she has been "here" & exploded the last few weeks. We think it is due to her poison whatever exposure. It has obviously sent her immune system into overdrive. Just like when she gets a fever & clears, this seems to be going on. We were joking saying we are going to keep her rashed up from now on. I so wish they could figure out what makes her clear with fever, etc. It would be nice, huh? In the mean time, I am just enjoying her. She is such a sweet kid.

And it Keeps Going!

More bragging here!

We went to the eye doctor yesterday. She did AMAZING! She jumped up in the chair, told them she wanted to see the letters, not the shapes. She didn't even need me to sit in the chair with her. The only time she got upset was when they had to dilate her eyes. That wasn't a big deal. The problem was the nurse wouldn't listen to me about not restraining her. MM HATES to be restrained. If you tell her, prepare her & let her know what is coming, all I have to do is gently hold her hands. Once we got through that, it was only a 10 minute meltdown. She then went back & saw the doctor. He was pleased. Eyes are just a little worse, but he is hoping we will plateau & not need surgery. I will continue to do glasses as long as it works. Not patching for now either. Just drops every now & then for when she starts looking out the bottoms of her glasses. We will dilate for 3 days & see if it stops. If not, then we will have to do patching again.

Then we went to the dentist. We went to the dentist in town who specializes in SN. We were all prepared to go visit & make the appointment for sedation since she is so orally defensive. Well, Miss Thing went right back. They wanted to do a panorex of her teeth. I explained to her about the xray & how to do it. She stood & bit down & did great. We then went back, she jumped up in the dental chair. She hit it off right away with the hygienist. She asked what her name was, what tools she had, etc. The hygienist took the one pointer & MM said "You not gonna give MM a shot are you?". Hygienist said "No, I use this to point & count your teeth". MM opened up & let them count her teeth! Then the hygienist let her touch the brush, etc. MM LET her clean her teeth & paint on the fluoride treatment! The dentist then came in who is a very large, kind voiced man. She shook his hand, asked him to count her teeth. She only gagged a few times. Her teeth look great. We have taken immaculate care of them (his words). No cavities, but her mouth is way, way too small for all those teeth. He said unless she does some serious growing, we are looking at some major orthodontics. Even that news couldn't spoil my mood.

She got her first phone call yesterday from a friend at school. This is the conversation:

Me: Hello?
G: Is this MM's Mommy?
Me: Yes it is.
G: This is G. Can I please talk to MM?
Me: Sure. MM the phone is for you.
MM: Hello? Who is this?
G: It's me, G. What are you doing?
MM: I hanging out with my cousin. We playing.
G: I'm going to give your mommy my phone number so we can play this summer, okay?
MM: Sure. We can play. Mommy its for you, it G.
Me: Okay, G. I've got your phone number from the caller ID.
G: Okay, I will call in a couple days so I can play with her. I live in Knoxville.
Me: Okay, bye-bye.


Too cute! This is the little girl that was MM's peer buddy. We gave her our phone number for summer play date. I was excited she called right away. This little girl also cried cause MM wouldn't hug her the last day of school. She just doesn't hug too often. I got her to give high-fives to her though. MM loves to give high-fives as her way of hugging.

She has really had the best week ever!

How do you top that off?

Nana bought her a DS for her hand/eye coordination & cause she got all Es (which means excellent) on her report card. She picked the My Baby Girl game. She likes to be the mommy. And guess what? She has already figured out how to work the game! :-)

***There was only one downer at the dentist. There were a lot of people there who were foreign. A couple of women were speaking in an unrecognizable language & pointing & staring at MM's braces. I just wanted to scream at them That is RUDE in any language! You can talk all you want, just don't point & stare. I would have thought there would have been more SNK there, but not when we went. It was all typical kids. Note to self, get first appointment of day from now on.***

Best Days EVER!

Well, the title might be an exaggeration, but no lie. Today was one of the BEST DAYS EVER in my life since I had MM.

Why?

Please hang with me while I brag.

My amazing daughter. The one who was born premature. The one who has cerebral palsy. The one who they said would never walk. The one who they then said would never walk unassisted. The one who they diagnosed as having autism spectrum disorder. The one who wouldn't be able to be mainstreamed until third grade. Yeah, that girl.

She completed & graduated from regular ed kindergarten. Not only did she pass, she superseded all of their expectations. She did it! I just want to jump up & down & scream with my fists in the air:

HEY WORLD! SHE DID IT! WE DID IT!

She also got an award at the assembly for being the Super Site Word reader of all of kindergarten. She was very proud of herself. Her daddy went & watched her get the award- mommy had to work. A couple of her classmates got citizen awards for always going the extra mile & helping her. She loves those two girls & tells me so along with that they are her friends. They love her. The school has instilled such a sense of community in those children & really take care of MM, encourage MM and make sure she does what they are doing & gets where they are going. Her teacher made an amazing video of the year that she gave a DVD to each student. I bawled my eyes out watching it. My baby is a big girl now. She is going on to regular ed first grade with all of her supports.

This day has confirmed our choices. We made the right one for her & us to mainstream her from the beginning. The children are used to her & know how she is & they love her just the same.

Her second tooth fell out yesterday (finally) after the permanent one has been in, so the tooth fairy came last night. She only left a dollar this time. I am glad cause we go to the dentist for the first time tomorrow. We also go to the eye specialist in the morning.

I am feeling better. I worked all day yesterday & part of today. I leave early on Thursdays to take her to therapy. She had a great OT session. She cut, glued, colored & wrote her name very legibly. She interacted & made astonishing eye contact. She had water therapy. She moved her arms & her legs in a true swimming motion for 5 strokes. First time ever! Her therapist was jumping up & down, cheering. Of course, this scared MM and she didn't do it again.

While I was in the hospital for the week, MM & Daddy came up with a wonderful surprise. Again the kid with all of the above mentioned stuff has learned to pedal a regular bike with training wheels. Wooohoooooo! Watched her do it for the first time Tuesday. Yes, I was bawling then.

She has told me a million times today how much she loves me & daddy & nana & pop-pop.

I got a great evaluation at work which means a great raise. I got a guardian angel award at work for giving good care to someone. It is a very special recognition to get & not very many are given out.

It has been a good week. I know this is disjointed, but I just had to share my great news. This is one of the best days that I will never forget. Honestly, ranks right up there in my top 5 of my life like the day she was born, getting married, etc.

With this, I will leave the lyrics to the song that the teacher used on the DVD. I had never heard it before & I LOVE it. I am going to download it (even if it is by that kook R.K.E.L.L.Y. )


"The World's Greatest"
I am a mountain
I am a tall tree
Oh, I am a swift wind
Sweepin' the country
I am a river
Down in the valley
Oh, I am a vision
And I can see clearly
If anybody asks you who I am
Just stand up tall look 'em in the Face and say

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it mmm
I'm the worlds greatest

I am a giant
I am an eagle
I am a lion
Down in the jungle
I am a marchin' band
I am the people
I am a helpin' hand
And I am a hero
If anybody asks u who I am
Just stand up tall look 'em in the Face and say

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it
I'm the worlds greatest

In the ring of life I'll reign love
(I will reign)
And the world will notice a king
(Oh Yeah)
When all is darkest, I'll shine a light
(Shine a light)
And use a success you'll find in me
(Me)

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
[*]It's the greatest
Can you feel it
It's the greatest
Can you feel it[Repeat * while:]
I saw the light
At the end of a tunnel
Believe in the pot of gold
At the end of the rainbow
And faith was right there
To pull me through, yeah
Used to be locked doors
Now I can just walk on through
Hey, uh, hey, hey, hey
It's the greatest
I'm that star up in the sky
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest

MM, you have made it!

Sweetie

This morning when I came downstairs:

MM: "Mom, I am so glad you are still here"
Me: "Me too"
MM: "I am so glad to see you. Are you better yet? I love you Mommy. Do you love me?"
Me: "Of course I love you & yes, I am getting better"

This was repeated about 20 times already this morning.

That is the best medicine/healing power of all.

It is so hard for her to have me disappear. She wanted to go to Nana's yesterday, but cried cause she kept saying "Mommy won't be here" implying I was going away again. I hope this anxiety resides for her soon & she realizes it was just a temporary leave. Thanks for all the well wishes.

One more thing in regards to MM. Her poor little legs need a desperate work out. She hasn't been to therapy in two weeks cause I have been in the hospital. Her lower legs almost look atrophied. Her daddy tries hard, but doesn't do all the "extras" like I do. Her feet are so down & inward and keep having spasms. This weekend is going to be lower leg boot camp for her. She is not going to like it. We were also supposed to go for a new casting to get new DAFOs. Hopefully they can get us in this week. She needs new ones quickly.

Poison SOMETHING!

We don't know what it was/is. We all somehow got exposed to either pesticides, poison ivy, poison oak or poison sumac. We have all had rashes & I ended up with a severe allergic reaction, spending nearly a week in the hospital. Needless to say, this hasn't been fun. MM is really out of sorts, from the rash & my disappearance. Poor DH has been trying to do it all & realizes how hard it is. I hope to be on the mend & get everyone back in their routine quickly. Wish us luck. I am so sick of bad things happening over here.