Last Day of Summer

On the last day of Summer, when your non-verbal child tells you that she is sleepy and wants to go swimming....

That is exactly what you let her do!

And you enjoy every last minute of it.

Music Prep

On Friday, I took Caleigh to our first music prep class at TCU. It didn't go well. We made it through the hello song, Caleigh even waved twice, which she doesn't do. As soon as the song was over she lost it. Alligator tears, puckered lip, totally upset. I took her out in the hall to calm her down and it actually took longer than usual. Once she was better we made it back in. I stood with her and bounced, bounced, bounced trying to make whatever song they were singing somewhat better. If my bounce slowed the lip would emerge. During the last, drawn-out note she lost it again. We went back in the hall and I had to stay as far away from the room as possible because she was upset even hearing it through the door. When the class was over I told the instructor that it just wasn't going to work. Hopefully we can still get a refund at this point.

Music and Caleigh are a very complicated thing. From the week she was born there was classical music playing in her isolate. The girl has been listening to music non-stop since then. As I type this, we are listening to the sound track of Glee. She's grinning from ear to ear. Caleigh's life IS a soundtrack.

I noticed a sensitivity to certain tones at 4 months old. We were in one of the day-rooming in rooms in the NICU. It was around Christmas, quiet, and I was humming and singing Silent Night to my very sick baby. Right there her lip puckered out and she lost it. I stopped singing immediately. To this day humming anything is bad news. Caleigh sticks out the warning lip shortly before breaking down so there is a chance to recover before the full tantrum. But still, what mom doesn't rock and hum to their baby? I had to constantly remind myself not to hum.

I'm going to be the first to admit it, I can't sing. So I thought my kid couldn't stand my singing voice. To try and prove that wrong, we've tested the theory with Eric, Mimi and Uncle Heath with similar results. It wasn't just me.

Groups of people singing to Caleigh with no background music, i.e. Happy Birthday song, has always ended up with a breakdown until this year. There was a hint of a lip pucker but we made it through.

The handful of times we've attempted going to church it ended very badly. As soon as the organ or microphone comes on she losses it.

Caleigh likes the ukulele, but not the guitar. If it's within a song she doesn't mind. She likes Lady Gaga not Celine Dion. She enjoys kid's voices. Loves just about any Pop song out there and yes, puerto rican rap. I am fully aware that I lose some serious parenting points for that one. She seems to love the fast Spanish talk. The list could really go on and on. If I'm going to sing, it better be with the music and Lord knows it better be an upbeat song.

So I'll leave it up to this....Caleigh is extremely sensitive to certain tones. It seems that some tones actually hurt Caleigh and throw her nervous system off. It seems she's more comfortable with conversational type of tones, but who really knows? Caleigh is a music critic. She knows what she loves and when she finds it she is incredibly happy.

And they thought she would never....

So I mentioned earlier that our speech therapist didn't think she was challenging Caleigh enough and wanted to revise her goals. When we met with her this week she brought one of those 'wonderful' standardized tests to see if Caleigh is totally age appropriate in speech-cognition. I was apprehensive.

She blew through the 2 yr old section and only missed about three things on the 3 yr old section. Those three things were mostly related to fine and gross motor issues and my lack of trying. For example, completing a 3 step non-related process, i.e. go pick up your toys, rub your belly, drink from your cup. I can honestly say that I've never asked Caleigh to do 2-3 things in a row. I will now.

Plus you get your whole 3rd year to reach all of those goals. Caleigh just turned 3. So she's ahead of the game so far thanks to the iPad & Proloquo2Go and a pretty amazing brain.

After she was done with the test we tried some little cards that explained situations.

The cards were set up like this:
One card had a picture of a lady with a seat belt on and two children with belts on behind her. They were floating in air. The card said "your mom drives this"

Then we would show Caleigh two more cards. One was a picture of a ring and had the word below it. The other was a picture of a car with the word below it.

Caleigh picked the car.

Q. Your mom drives this
A. Car

All together Caleigh did 8, she got 6 right. She missed, You unlock a door with this; we use the garage to enter our house so she hadn't seen that before and You wash your hair with this; she looked up and smiled a clever little grin and chose hat instead of shampoo. I'm thinking she did that on purpose. Caleigh knows what shampoo is.

Those cards and Caleigh's quick responses were amazing to me. She's been listening and picking up on everything.

On a side note, I did finally receive the school district's evaluation after I sent in a certified written request. They consider Caleigh Mentally Retarded by their test numbers and their evaluation.

Getting that packet made me realize that Eric and I made the right decision in homeschooling Caleigh.

Fun Things

1. Caleigh's glasses 'seem' to be staying on better. We are still going for weekly adjustments though. If we keep her active then she doesn't pull them off as much. Got to keep those hands busy.

2. Our new speech therapist had a light bulb moment with Caleigh. I was asking Caleigh to touch the blue key on the piano. She did it. I asked her to touch the green key. She did it. Orange, Red, Yellow & Pink. She did it. Our girl knows her colors. The therapist looked at me and said " I think we need to re-work Caleigh's goals. She's a smart girl." Yes she is.

3. Monday we had our orthotics lady come out to check on Caleigh's AFOs. They have been leaving marks on her feet, and they look way to short. She re-casted her for a new pair which we should receive in about 3 weeks.

4. Monday the DME people came out to do some more adjustments on Caleigh's equipment. They adjusted the stander...again and adjusted the wheelchair....again. Maybe the second time will do the trick. Everything looks good right now. We also talked about a toilet seat for Caleigh and we decided to go ahead and get the ball rolling on the paperwork.

5. On Wednesday we went to the neurologist for our yearly check-up. The appointment was plain with no excitement. We discussed seizures and meds and he told us that Caleigh didn't need to be on the meds if she isn't having seizures. Agreed. We showed him the iPad and Caleigh told him that "I need kisses mommy please." He giggled, shook his head, I gave Caleigh kisses. He was happy to hear that we ordered the powerchair. He noticed that Caleigh's left calf is getting a little tight. Hopefully with the new AFOs that can get worked out on it's own. He also had the same reaction that our GI did when I mentioned that we were working on potty training. It was kind of a disbelief, giggle, smile. It was funny to watch....again. Overall, he said that he was very impressed with Caleigh's receptive language. We go back in six months to visit again.

6. On Thursday I met a friend for coffee and we ended up going to test drive the Honda Odyssey Mini-Van. It was pure bliss as far as mini-vans go. Yep, I just said that. It really got me thinking about a ramp van and getting around once Caleigh has her powerchair.

7. Yesterday was Friday. Eric worked. Our nanny had the day off. It was just Caleigh and I. It was so incredibly nice. We went swimming twice. Once in the morning and then again in the evening. We dried off floating on the hammock both times. We watched movies. We listened to music. Caleigh took a nice long (for her) nap. While she did that, I washed and vacuumed out the van in an attempt to make it look and feel as shiny and new as the Honda I drove one day earlier. I think the only thing I'm missing now is that new car smell and a van payment. The day was so relaxing I wish we could have at least one of those a week.

Weekend Recap

On Saturday, Caleigh and I loaded up and headed to Dallas to walk in the United Cerebral Palsy 1K run walk roll. I got out of bed at 5:45, all by myself, to achieve arriving on time. Brownie points for mom. Caleigh and I both are not morning people.

We showed up, met our friends, and proceeded to walk & roll. Unfortunately, the event was probably the worst organized route I've ever seen. At one point we had to push the girls up a very large hill, with mulch, roots, & rocks in the 90+ degree heat. A couple of nice guys helped push us up the hill while we were working on pushing the chairs. The course was a mess and we were told to go the wrong way. I'm pretty sure we finished first. It was even their 15th year. Oh well, always eventful. All was well in the end.

We chatted with some other parents, had some balloon animals made and stood in front of the BEST invention ever to grace 100 degree Texas heat.... A bucket of water.....with a fan attached. Caleigh loved the cool mist. She did great in her chair and I would say she sat in it 90% of the time while we were there. All time record.

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Sunday was the big Birthday for Caleigh. 3.0

I didn't get a lot of photos. Mainly because my small camera decided to croak right before the party. It was the point and shoot camera I bought on the way to be admitted to the hospital just 3 short years ago. It lasted 3 years to the day, go figure.

Caleigh did great with the crowd in our house. She didn't break down over the happy birthday song. All that hard work and preparation the week before really paid off. We ate "make your own strawberry shortcake" and she even had a few bites of pureed strawberries. She helped me open all the presents. She even pulled on some wrapping paper. Gift bags don't really give you the fine motor practice anymore. So the few that were wrapped she enjoyed tugging and ripping. I'm happy to report that she didn't even have one meltdown. Caleigh is really growing up in so many ways and behavior is a biggie. She was exhausted by the time everyone left. Eric and I put our just barely 3 year old to bed about 30 minutes early and she slept all night long. We did too.

Everyone can't seem to get over how big Caleigh is. Here's a picture of me holding her. I'm 5 foot tall on a good day. My drivers license says 5'2. I might have been fibbing when the DPS lady asked me my height or maybe I was in heels. It seems unclear to me now. Anywho, 2 inches doesn't matter, right? I'm just hoping Caleigh's height is a happy medium between mommy's 5 feet and daddy's 6'1. Yikes.

We had a great weekend. A full weekend. A weekend shared with family and friends that we dearly love.

3.

I just can't believe that our little baby girl is 3 years old today! Caleigh is no longer a baby she is officially a BIG GIRL!

Tears of Joy and Tears of Triumph hang in our hearts today. I've found myself weepy this week and looking back at old photos.

At 3 years old you are still touching lives and taking names.
You are making more and more sounds, all day long.
You love to "sing" with your favorite songs.
Music makes your world turn.
Your favorite color is Blue.
You are blowing people away with your iPad skills.
Your luscious curls are the envy of all straight haired little girls.
You know your barn animals, body parts, basic colors & so much more.
Most of all you know exactly what you want and when you want it!
You sit on your pretty pink potty like such a big girl.
You get shy in new places and around large crowds.
Sitting all by yourself gets better everyday.
Your wiggle crawling is so much fun to watch and cheer on.
You look so chic and stylish in your purple glasses.
Your love of swimming combined with music is exciting.
You love it when Daddy makes the ZZZZZZ sound while we brush your teeth.
You sleep in your own bed all night long just like a big girl should.
Toy Story remains your favorite movie.
Dora & Strawberry Shortcake are coming up fast.
Sesame Street is still our morning staple.
Doing things "all by yourself" is your favorite and the most motivating.
Your smile lights up a room and our hearts yearn to see it each and every day.

Today you weigh just a few ounces shy of 30 lbs and your 34 inches long. You are wearing 5T tops & 4T bottoms in the waist not the length. You already need a personal tailor! Your teeny tiny feet are a size 4 which equals the size of a 12 month old. Your definitely taking after your mommy on that one.

This morning when I woke you up singing Happy Birthday; you smiled SO big it filled my soul. This birthday is going to be the best yet. You know what your birthday is. We've practiced singing the Happy Birthday song all week long and we've talked about your party for days now. We have a small party set for this afternoon. It's really going to be special.

Happy Birthday Big Girl! Your 3rd year is going to be the healthiest and best yet! Mommy and Daddy Love you SO much!

Wednesday Bedhead

Caleigh's bedhead is something to be seen. It actually looks halfway decent in these pictures. Her hair is growing mostly up and not so much out. I'm pretty sure a thick, twirly mohawk is in her near future. I'm on the hunt for the perfect hair product to tame those curls. My no chemical rule is making my quest a little more difficult. For now, leave in conditioner will have to do.

Birthday number 3 is closing in. My self confidence in teaching my own kid is hanging by a thread. Estimated homeschool-pre-school start date is August 30th. The list of things to do is mounting and I'm starting to feel the stress. If school isn't enough, I've got 29 things on my To-Do list not counting the shopping list! Yes, I just stopped what I was doing to count...

The Classic Weekly

August in Texas is definitely here. I took Caleigh to OT the other day. We were inside for maybe an hour. We came out and I got Caleigh all strapped in. The temperature in the van said 117 degrees outside. On the 30 minute drive home it only cooled down to 108. August in Texas.

So we've been laying low this week when possible. We just don't want Caleigh getting too hot or dehydrated. She's done well so far with her fluid other than a tube malfunction Wednesday. Were not sure how much we actually fed the bed that night and how much Caleigh actually got. It's not the first time that's happened and I'm sure it won't be the last. Oh well, I'm chalking it up to a toddler refusing her peas and carrots that day. Natural fluctuations in feeding.

The beginning of the week started off rocky with Caleigh not sleeping. Her allergies have been slowly getting worse and by Sunday night we all got about 2 hours of sleep. Caleigh has been grinding her teeth terribly and telling us she is sleepy all the time. It took me awhile, but I finally put it all together. Monday afternoon we went to see our Pedi. She switched Caleigh to Nasonex and told us to slowly wean her off of Zyrtec after 5 days on the Nasonex. After about the second day on Nasonex Caleigh was sleeping well again. The grinding has gone down and the sneezing has gotten better. Caleigh isn't always so tired either.

While we were at the Pedi I showed them a rash on Caleigh's back that wasn't going away. It had been there for 3 weeks. Not really getting better but not really getting worse. It didn't seem to bother Caleigh. They gave us a hydrocortisone foam and three days later the rash was gone. The thought is that maybe Caleigh came in contact with a latex pool float or something like that. Who knows, she has such sensitive skin.

Going to the pediatrician and talking about medicines made me think about the amount of meds Caleigh has been on and is on now. Caleigh is on the least amount of meds I think she has ever been on. She gets the Nasonex for allergies, Sulfasalazine for ulcers and that's it in the medicine category. We also give her milled flaxseed for fiber and good omegas, oreganol oil for bacterial overgrowth and a multi vitamin daily. We also give a pro-biotic every three days. At the height of Caleigh's medicine schedule we were doing 24 doses of meds per 24 hours. It was crazy! I'm not sure how we kept everything straight. It's so incredibly nice to have her on just a few meds. It's a major accomplishment.

Caleigh's glasses have become the newest pain in our lives. She's figured out that she can take them off. She pulls them off...I put them on...she pulls them off....I put them on. You get the drift. Countless times a day we play this game. When we aren't playing the on/off game, I'm usually cleaning them so that she can actually see. We've already gone to get them adjusted once and I am planning on getting them adjusted again this coming week. Somehow Caleigh already scratched one of the lenses too. Probably on a toy. There are pros to the glasses and the biggest one is that Caleigh is definitely seeing better. Another bonus is that random strangers are treating her older then they have before. It's interesting. She's not a baby anymore, but people always treat her like one. Maybe the glasses will help that. It's only been a week so who knows.

Potty training is going well. Caleigh has told me that she needs to use the potty (on her iPad) a total of 4 times and actually went. Sometimes she will tell us that she needs to use the potty when she wants her diaper changed because we do change her diaper after she sits on the potty. Smarty pants, it's a closer choice on the iPad and she doesn't have to reach as much. We went to the store the other day to get some of our pre-school stuff laminated. I promised Caleigh she could pick out some stickers. I went to do the laminating first. Caleigh threw a small fit. I kept her calm by reasoning with her and talking about the kinds of stickers she could get. When we were done laminating she picked out some shiny smiley face stickers. She held on to them all the way to the cash register and didn't make a peep the whole time. Those are her special stickers for when she tells me that she needs to go. I had to make a larger potty chart because Caleigh already filled up the first one. Caleigh is now going regularly when she first wakes up, before nap and before bed. If I'm good and we are home, I will set her on the potty throughout the day too. There for a while she would go every time I sat her on the potty. I was beginning to think that she just always had to go, but the other day she stooled after sitting on the potty for quite some time and a little coaching from mom and dad. I think she has control, I'm hoping. I do know one thing...I need to be the one in training. I need to be more consistent, but I've decided that potty training will be apart of our pre-school program and I will get serious about it then. Overall, Caleigh is still loving using the potty and she is doing a great job!

This coming week will be the countdown to Caleigh's 3rd birthday. I can't believe she will be three. Geesh, how time flies.....