Catching up...

It's been awhile... but we've had 2 incredibly busy months. Lots of random stuff to update on, and I'll get more in depth in later posts.

Max turned 2! We had a quiet little dinner here at home.. since he won't eat anything out. No breakfast pancakes like the other kids, no birthday cake or blowing out the candles... just lots of birthday hugs and kisses from all of us. 2 years... I can hardly believe we made it. He looks so normal... you'd never know all that we still deal with and worry about, but he's alive and we are so grateful.!!! He's definitely a terrible two now! It's like something in him snapped and he became sneaky and silly and stubborn all at once! He climbs and throws and basically likes to get into trouble. Sounds like a 2 year old to me!

We celebrated Max's birthday again at the March for Babies. Actually, we stood under a tent with 22 friends in the pouring rain until they cancelled the event. But we did lots of media for the March of Dimes that day and most importantly, we raised more than $2300 as a team! It's so important to us to do this... it's one way that we can give back and try to help other families, so that hopefully no one else will spend 123 days in the NICU like we did.

 



Alex turned 5! He wanted a rock star party and we pulled it off. More than anything for his birthday, he wanted new tennis shoes for his birthday... MEGA FLEX... because they have springs. He's been running and jumping ever since he got them!

Ella had a second dance competition and did well. Honestly, I thought she danced better the second time around, but her competition was really stiff! It was tough for her to understand.. she's likes winning, and especially bringing home those awards that she gets to keep for herself... but she's already said she wants to dance another solo next year... so I guess she's learning to face disappointment too.

I've been working like crazy, Troy's mom was here briefly over Mother's Day, Troy is off for a boys' weekend, and next week is Memorial Day! AACK! Where does the time go!? I'm so anxious for school to be over next week, for a new summer schedule to begin, just because it's a little less busy.

Like I said, it's been a few INSANELY, CRAZY weeks!!! But we're starting to see the light at the end of the tunnel. Last, but not least... my favorite photo of the past few weeks.. controlled chaos, as usual... but it's my life and I love it!

Dirty Little Word

Apraxia. When she said it, I already knew what it meant, and while it's not an official diagnosis yet, it scares me. Let's back up for a minute...

Max started speech therapy this week. He was finally starting to babble and make some sounds after the surgery to place tubes in his ears, and we were hoping to get those verbal skills going. His gross motor (big muscle) stuff is going well, fine motor (fingertips and pointing) are slower to progress. Plus, he still only eats crunchy and cold stuff. Nothing warm, nothing that requires as spoon, we have added chewy fruit bites to the mix, but that's it.

Apraxia is this:

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.

What are some signs or symptoms of childhood apraxia of speech?

Not all children with CAS are the same. All of the signs and symptoms listed below may not be present in every child. It is important to have your child evaluated by a speech-language pathologist (SLP) who has knowledge of CAS to rule out other causes of speech problems. General things to look for include the following:

A Very Young Child

• Does not coo or babble as an infant
• First words are late, and they may be missing sounds
• Only a few different consonant and vowel sounds
• Problems combining sounds; may show long pauses between sounds
• Simplifies words by replacing difficult sounds with easier ones or by deleting difficult sounds (although all children do this, the child with apraxia of speech does so more often)
• May have problems eating

So the speech therapist noticed that Max is showing some of the indicators of this. Too early to diagnose, but something we need to work on, be aware of and be prepared for if things don't improve. I think it scares us most, because of the brain bleed he had a birth. It resolved, but we've always known that there could be developmental problems that would come along later, Dyslexia, Autism, and Apraxia are on that list.

We're making flash cards for all the things Max loves and working with him on the sounds he needs to make. We are ramping up the feeding therapy in hopes of stimulating his mouth to build the tongue, cheek and jaw muscles. We are looking at an Apraxia program at a local special needs school which he could start as early as next fall. We are also considering what this could mean for him at preschool and school age, and whether we might need to re-locate at some point, for better educational options for him.

It's all uncertain right now, and the most disappointing part of this, is that we really want him to speak. We've waited 2 years to hear him say "I love you" and that thought of that not happening is well, heart-breaking. But we're not giving up! Max has done LOTS of things that doctors thought he would never do. He just seems to do things on his own schedule, and with LOTS of help. So we're kicking it into full gear around here, doing our part to help him as much as possible. We'd like to ask that you do your part too... prayers for him and his therapists and us and we work to help him reach his full potential would be so appreciated.

We know and trust that God has a plan for Max. If that plan doesn't include normal speech patterns then that's okay, we'll take that sweet smile anyday!! But, here's hoping he'll be talking my ear off someday!

Still photos from the solo dance...

I have most of the stills on Facebook... but these are a few from the stage photographer. She had a fit that I didn't order the one of her leap!!! So I've asked a friend to pick up a copy of that one today. These were our faves!

Tiny Dancer....

She looked so little on the stage... I was so nervous I almost cried but she was cool as could be. She was the very first dancer of the day.... no one else was on stage... no one to watch and then follow what they did. She went up as soon as they called her name and then had to wait for the music. The big girls from her studio were cheering for he while she waited, and waited, just like they've taught her to. (you may need to view full screen... I don't think I can fit the wide screen on the blog correctly)



I know we're biased... and she's only 6... but it was breathtaking for this Mommy! Daddy had tears in his eyes.

The most important thing to me, was just that she didn't freeze on stage or panic and run off. I didn't care if she was first or last, as long as she felt good when she came off stage. And she did...s she came running to Daddy to see if he saw her. (as if he'd miss it)

For Ella, the joy was in the awards. She asked if she might win a trophy and I said, I'm not sure, but I think you were wonderful up there and I'm sure you'll get a pin for your jacket! (which she doesn't have but is wanting because the "big girls" have them.)

She came home with 3 awards and was thrilled. When I put them in our suitcase to haul to the car she asked:
"Do I get to keep them?"
"Yes you do Ella! They are your awards. "
"COOL!"

She made me smile... because she was so pleased with herself. I was so proud of all her hard work, and how special she felt about what she'd done.

New camera/solo rehearsal

Ella has been working so hard on her dances this year. She has 2 group dances and for the first time she's doing a solo this year. I think I'm more nervous than she is... she seems so lazy and laid back in rehearsals, that I wonder if she knows it. But yesterday, she had a small audience of "older girls" for the first time and our girl turns on the charm. She did a great job. All I hope is that she'll remember it and not freeze on stage. She's so excited to do this and I just want it to be a good first experience.

Troy and I picked out a new camera this weekend... for my birthday... so I've been experimenting with it to learn how all the bells an whistles work. I'm not there yet, but it's definitely better than my former "point and shoot" camera. I'll be doing a lot more work with it over Spring Break... so hopefully I"ll be ready for Ella's competition at the end of the month.

In the meantime... enjoy her rehearsal! If the full width won't show up on my blog, you hit play and then double click on the video, you can take it full-screen.

DISCO Diva Daisy and her Daddy

Ella had her Daddy/ Daughter dance this past weekend, an activity for her Daisy Troop.

She and Troy were all decked out and ready to Boogie Oogie Oogie!


Ella told him what jewelry to wear, picked out his sunglasses at the costume shop, and told him he needed to roll up his sleeves, so his gold bracelet would show.

She's already his personal fashion consultant... wonder where she gets that???

"She is our Sunshine!"

Ella made her theatrical debut last night in the Prairie Center Elementary 1st grade musical "NUTS."

They were adorable and really practiced hard. Just look at the first first song of the night, "The Circle of Life." They had so much fun! (I had to link through YouTube, because the files are just too large for the blog!



This show had a fox, a bear, a raccoon, a chicken, a duck, dozens of nuts, rain, clouds, a tree, and the sun... guess where Ella landed? Yep, our little sunshine was the sun! That's why she look so bright mixed in with all the other wildlife on stage.

Most of the kids had one line in the show... Here is Ella's line from Troy's cell phone:



And her song, just check out our little Vanna White!!! I was so proud, and look at those strong arms! (I guess the acro class is paying off)




The music teacher made her prop, but she asked if we could bring it home and "glam it up," which we did. Throw on some gold glitter glue and a few leftover rhinestones from her dance costume.. and voila! the sun shines!!!

I was so proud of her, really of all of them. This was a fun show! Max was mesmerized through the whole thing and gave people dirty looks when they clapped like "hey, my sister and her friends are doing something, hush up!" Alex laughed at every single joke, so loudly, that people around us were laughing at him.! It was preschool humor at it's best I guess... but we all had a great time!