Has it REALLY been that long? YIKES!!!

I didn't realize I hadn't posted in ages! OK-so a quick update-the day of my last post, Keelin ended up in the Emergency ROom with a dislocated elbow. She was just walking along holding my hand and fell down. She put no resistance in her muscles and I heard her elbow go "pop". She screamed bloody murder and I knew we were on our wayto the e/r. Apparently her low muscle tone leaves her prone to these types of injuries. Great..........

In apraxia news, Keelin's SLP has decided that Keelin would benefit greatly from learning sign language. Keelin's brain keeps learning new things, but her ability to communicate these new things is still waaaay behind. She is becoming very frustrated so we need to find a way to help her "speak" to us. In therapy land, this is called AAC (augmentive and/or alternate communication). So we are ordering some Signing Times DVDs and flash cards. I will let you know how it goes. She is also sick with a sinus infection that turns out is resistant to the antibiotic she was on. So she started a new one and we will see how it goes. Cultures from her sinus will be back on Monday. She also has her Gastric Endoscopy this coming Friday at CHOC. It's a general anesthesia procedure so wish us luck!

In Baseball news, Jared's team is 4-0. He is their starting pitcher and he is a rock star! Incredibly athletic and talented. He has a big game against the Yankees tonight.

In glass news....I haven't had alot of time to do glass or update my website. I am working on a large custom order currently. That's always nice-I like those. I am leaving after Keelin's procedure on Friday for a glass and bead expo in Las Vegas. Two days with my glass friend Jen. No hsuband, no kids. Me, glass and gambling! OMG!!!!!!!! ummmmm WOW!!!! I am really looking forward to the break. It's been a long time!

That's all the news that's fit to print. Be good people!

CIAO!

Entirely gorgeous!!!

OK-so Keelin has been a mess today. Speech therapy for her Apraxia was a mess, she was very whiney and not herself. I guess everyone has one of those days..........Mondays-Argh.
These are the pictures from the five good minutes she had today. She NEVER lets me do her hair, but I caught her in a distracted mood and put a super style on her! A bow in her hair and everything!

Then, I got out the camera and caught some amazing candid shots. I love these pics. Star quality for sure. My totally biased opinion!!!

Of course, the hairstyle lasted about three minutes before she asked me to take it down-you know-by yanking it out and grunting at me (uh-uh-uh!). A very insestent grunt. So while my attempt at Keelin Super Model was short lived, I got some great memories!

Everyone, have a super day

Laura

What's happening?

Well-here's a quick update from our incredibly busy lives. Keelin had a CT scan last week, no anesthesia and no restraints. She did it like a big girl and even though she was scared, she stayed still while I sang twinkle, twinkle little star to her. I was SO PROUD of her!

This Tuesday, Keelin has a visit with Dr. Tournay-the pediatric neurologist. We need an update on her head size(as it is too large in comparison to the rest of her) and need to discuss her apraxia dx. Don't know if she will order a repeat MRI. I was surfing the web and ran across a study indicating that large cortical areas are a sign of apraxia. Don't know if it's causal, but if I recall from Keelin's Brain MRI at two months-she had very large cortical areas noted as abnormality by the radiologist. Tournay has the records.

Jared is rocking it out in baseball, He is the starting pitcher and they are 2-0. GO Angels!!!!!!

Keelin's having a cow so that's all for now!

Toooooo Cute

ok-love this picture and blogger lost my original post about it. Damn you Blogger!

Old and Improved

I just listed this Key pendant in my Etsy shop. Love it, love it, love it. I have a had a fascination with recycling old objects into wearable items. Keys and watch faces,,,and soon to be more.

March Madness!!

Hello from Insanity central........

DId I tell you how crazy it is over here? Did I? Just a check in and maybe some new pics soon.....

I did the first show I have done in a looooong time-Dana Point Festival of the Whales........quieter than I would have liked-but sales were OK and I met some VERY NICE people. The total upside is that my Mom, Pauline, watched Keelin for us OVERNIGHT!!! This is the first time the husband abd I have been away over night since Kee has been born. Almost two years. By Mom's account, she did great. Non was worried that she wouldn't be able to tell what Keelin needed because she doesn't really speak but they got along great and all went smoothly. One night away felt like a whole vacation for us!

On the Apraxia front, Keelin is working hard in speech therapy. She gets a bit overwhelmed at times, but tries to find a way to bounce back and finish the tasks asked of her.

I have been wrangling insurance companies and logging too much time on the phone trying to sort out billing messes and get approvals for procedures. Keelin is supposed to have a CT scan this week. We are going to try it w/out a general anesthesia if I can ever get the radiology department and the allergist to quit crossing wires and get her on schedule. Trying to get this done for over a week now! ARgggh!

Jared is doing fantabulous! It looks like he will be his baseball teams "go to" guy for pitching. He is going to be their starter. He is so fearless up on the mound. It makes me happy to watch how he has matured up there and how much he loves the game. With so much going on in our lives, I am glad for some spot of normalcy. It's nice to just watch your kids have fun once in a while! His first game is a week from today.

I am going to be revamping my online store. Just need to get the pictures taken........I know people are looking for new stuff. Sorry!!! I will get there! I miss my glass!

So much more going on-but my world is calling me.....drop me a line, send me a letter, throw me a life ring, I have fallen and I can't get up. Just kidding-I can get up! (obscure commercial reference).

Have a great one all-

Laura

Apraxia of Speech

Well, I have been thinking about this for a long time-trying to settle in to what this feels like. Trying to wrap my head around what our day to day is going to /does look like and what the next few years will hold for our family and our little girl, Keelin.

A short history...........Keelin was born in 2006 after several years of infertility and six In Vitro Fertilizations. It was a long road but we thought the hard part was basically over. At 9 weeks of age, Keelin stopped breathing. Long story short, after a brain and spine MRI, a diagnostic surgery and seeing many specialists (pediatric ENT, pediatric gastroenterologist and pediatric neurologist) Keelin was ruled out for brain and lung tumors and was determined to have low muscle tone, requiring physical therpay and GERD, requiring medicines 8 times a day. Her life was not threatened and we were very happy!

At 12 months of age, while still in physical therapy we noticed Keelin was not hitting her language milestones. We were referred out to a pediatric geneticist for more test. Crazy tests. 17 vials of blood drawn at one time. Scary possibilities. The tests took two months to get back and good news-all was normal. But why couldn't she speak? We then were sent to a speech therapist.

The speech therapist confirmed that Keelin had a significant expressive speech delay. Her receptive skills-what she understood- at 17 months were that of an 18-21 month old. Her expressive skills-what she could say-were that of a 3-6month old baby. We were told to get her into speech therpay right away. Our insurance only allowed a minimal amount of coverage and we had eaten that up on the inital evaluation. We had to see if we could qualify through the state. The state came in and did an evaluation-Keelin qualified as she was definitely behind, but no speech therapists would be available for three months. Keelin would have to wait.

As we waited, Keelin fell more and more behind and grew more frustrated. We knew she could understand us-she just couldn't tell us what she needed. She had some words, but not nearly enough to make her basic needs known. Finally we got referred out to a program with a speech therapist that would come to the house. Earlier this month, Megan-our fab Speech Language Pathologist- or SLP for short-did another round of testing on Keelin. Her receptive language at 21 months of age was now up to that of a 27-30 month old but her expressive language was still at 3-6 months with some skills in the 6-9 month and 9-15 month ranges. Drastically and severely speech delayed.

But with this bad news, was also an answer. Keelin was diagnosed with Apraxia of Speech. Turns out, she has almost all the hallmarks of this disorder. Apraxia is a neuro-processing disorder. Keelin's brain cannot pull up the "files" or "neural pathways" to make her muscles in her mouth and tongue to produce sound consistently. She doesn't imitate sounds unless she has heard them many, many, many times before. She also uses the same sounds to mean multpile things and often times her sounds come out stilted or slurred.

What causes Apraxia is not understood-and Keelin continues to have other issues that complicate her progress. You can see more about Apraxia Of Speech in children at http://apraxia-kids.org . There is such good information on this site! For now-Keelin receives Speech Therapy 2 times a week and occupational therpay 1 time a week. The insurance company is trying to deny continued occupational therapy and I am working hard to get approval for services. Keelin's therapy will be ongoing for several years.

WE are happy to have an aswer and are slowly starting to get into the new routine of our lives. Therapy is alot of work for her and me. I try to teach Kris and Jared what we learned and they are GREAT helpers. Keelin's long term prognosis seems to be good and hopefully she will be able to attend a regular mainstream school when the time comes.

In the meantime- we keep on working, keep on living and keep on finding the things in life that are beautiful. Oh yeah-and I could sure use a vacation!!!!!

Thanks for reading-

Laura