Celebrating Julia!

Cheese!!! Some new pics of Julia...

2011-12-04T13:34:00.001-08:00

Julia's First Nephew - David James!!!

2011-09-25T14:50:00.001-07:00

On August 7, 2010 Rush and his wife Brittany blessed us with David James Ezell...and what a joy he is!

Julia adores "Va-vid" and has a great time with him. It has been really good for her to have another baby in the family and not BE the only "baby". She helps with feeding, changing, baths and gives him lots of love!

What a great Auntie!!!!

David is loved by all his aunts and uncles...8 on our side and 9 on Brittany's side...5 great aunts and uncles...great grandparents and of course Grammy (Crystan) and Poppa (Robert) and Grandma (Beth) and Papa (David).

Absolutely adore this boy!!!!!

K...I'm an idiot!

2011-09-23T10:43:00.001-07:00

After ALL THIS TIME I got this brainstorm to check the apple apps store. Guess what? Blogger app! Oh, yes!!! Now I can post pictures and text SO MUCH MORE EASILY!!! Yes. I feel really stupid.

Bright side...now I can BLOG! As Julia would say "WOOOO-HOOOOOO!!!"

This is a picture of Julia and her baby "Tim" at church. She sure loves Tim and takes him everywhere. :)

A Long Overdue Update...

2011-09-23T10:16:00.000-07:00

Hello, Bloggerland!

It has been so long since I posted that I truly DO NOT know where to begin. Maybe the best way to start is by explaining my (very) long silence.

Our family has been through a number of transitions in the last couple of years...children have married (3), grown up and moved out (4), and now I am the grandma of the most precious little pumpkin imaginable.

Our lives have turned topsy-turvy with new things (think: dairy goats, chickens, pigs, gardening...or rather re-learning what we know about gardening now that we have gobs of room AND the worlds most sticky, icky clay soil.)

The reason for THESE new obsessions (I mean new HOBBIES) is the wonderful little home we purchased on 10 acres in 2009. We are so in love with our little patch of ground...our little house...our animals...our 7,000 issues of Mother Earth News and Countryside Magazine...SO in love. It is a lifestyle that we have dreamed about for two decades, suddenly plopped into our laps by the most amazing set of circumstances.

I also need to mention that our little place is 30 minutes (when traffic is flowing smoothly) from anywhere. We are rural. Very rural.

As a matter of fact, when I called a couple of companies about Internet service one told me just that. "Mrs. Ezell...you are very RURAL." She said this as though it were a bad thing. (????) The representative from the other company looked us up on the map and laughed. And offered us dial up at an exorbitant price. Ummmmm...no, thanks anyway! (I know, I know...satellite would be the answer to everything but we want ONLY internet...not Internet plus 947 cable channels. Would you believe that if we ask for Internet only the price is HIGHER than if we buy the package -Internet, phone, cable? Crazy!)

To be honest, the lack of Internet didn't bother me for a very long time. I have my handy-dandy iPhone, so occasional browsing or sending/receiving email is possible. Plus we were so completely absorbed in our new lifestyle...breeding, birthing, milking our goats...tending to our rapidly shrinking flock of chickens (THANK you, coyotes, red foxes and hawks)...raising and butchering (yes, you read that right) our pigs...trying to figure out this crazy soil and make it produce something (VERY frustrating!)...heating with wood (yep...as in: our only source of heat)...weddings...grandbaby...that I didn't miss having the Internet. I was too busy learning new things and exhausted (did I mention that all this is A LOT of work? And the sort I'm not necessarily used to...the up-at-dawn-tromp-around-ten-acres-chasing-goats-pigs-and-chickens kind.)

But as time has passed and I've read Tiffany's blog about her lovely Olivia, (Search Elastamom) and Andrea's blog about her beautiful Hailey (Search Living With Cri du Chat) I've realized how much of Julia's life has passed without my sharing any of it via her blog with people who care about us. I read through her website (www.celebratingjulia.com) and realized that it was such a beautiful chronicle of her life...and that it ends so abruptly. There are other blogs or websites about children with CdC that have done the same...they just float around out there in Internet space...and I wonder about those kiddos all the time.

So, I decided to try to figure out how to get back to blogging. The website is completely impossible to update without a full Internet connection to my computer...but blogging...SURELY I can figure out the blogging! And here we are. It is frustrating...I type each word into this phone (with one finger) in "Notes" and then copy and paste into the post box on blogger. Time consuming. But worth it!

Now...about Julia (that really is who this blog is about, though I think it will get hi-jacked from time to time as there is lots of great family news I want to share). Julia is amazing. I am so blown away by her and so proud of her progress that I could burst. I am so completely thankful for all that she is learning...doing...understanding.

If you would have asked me when she was a year old how I would feel when she is eight I probably would have burst into tears. The future was so SCARY! The obstacles SO insurmountable, the very THOUGHT of Julia at 8 was completely overwhelming. Guess what? We are here and it is BEAUTIFUL!

Julia walks, talks, runs, jumps, climbs, tells jokes, laughs, loves to dress up and be "pitty", helps with work around the house (no joke...really). She has an amazing sense of humor and sensitivity to others. She is affectionate, thoughtful, social, and loves to be around people.

She has no ongoing health issues, takes no medications, eats well (feeds HERSELF...though it does look as if a small tornado has passed through her section of the table when she is finished), has no significant eating issues (eats what we eat), sleeps 9-10 hours a night, LOVES school, has VERY few emotional meltdowns, is processing sensory well (although as she gets older there are some sensory issues re-emerging. Fortunately, her original OT (Teresa) and PT (Michelle) have remained close family friends and are so graciously willing to share their knowledge and give us direction...THANK YOU Michelle and Teresa!!! We love you!!!)

Julia has an amazing memory and we do not make a promise we won't/can't keep. If we say she can have ice cream after school it will be the FIRST thing she asks for as she gets off the bus!

All of these things are wonderful and we enjoy Julia and her great personality, her loving ways, her ability to crack us up like no one else can. Maybe it is because we have worked so hard to bring these things out in her. Or maybe it is because there were times when she was younger that we despaired of her ever developing them. Whatever the reason we are hyper-aware of all Julia's progress and thankful beyond what we are able to express for the lovely little lady she has become.

Now. There are lots of other things that are not so peachy. We do our best to downplay these and focus on the things that bring both Julia and us joy. However, to be fair I have to say that it really isn't paradise every stinking moment. (SURPRISE!)

For one thing, I despair of EVER seeing her potty trained. Really. I will probably be changing diapers when she's 20. Not trying to be negative...just real. And this is due in part to her incredibly strong will. If Julia decides she is not going to do something, the heavens may fall around her but she is NOT going to do it. No amount of cajoling, bribing, or begging is going to change her mind. Period. She does have occasional successes on the potty (YAY!) but not enough to count as even minimal potty training. Any suggestions, blogger friends?

Another issue is her desperate need for oral stimulation. She will put ANYTHING in her mouth. It really is scary. And occasionally inappropriate. Like when she tries to lick the people in line with us at Target. Yes. Totally humiliating. Or cars. She has this thing about licking cars. Maybe because they're warm from the sun???? No idea. But it's all bad. Trust me. We do the usual things...chewlery, vibrating toys, lots of different APPROPRIATE temperatures/textures...this problem is ongoing. For years now. And becoming more of an issue the older she gets, as you can imagine. I am at a loss.

Julia is also a huge mess-maker. Just random messes. DO NOT leave her unattended for more than 5 minutes. You WILL be cleaning up SOMETHING. Usually something to do with water. What is it with this irrational attraction to water anyway. Water from any source...any temperature...if it's wet she wants to pour it on the floor. Drink it. Pour it on her head. Dip her "wipe" (red...it MUST be RED...bandana) in it.

Now the "wipe" has become an integral part of our family. Julia takes it with her everywhere. No lie. Everywhere. School. Shower. Bed. Church. She WILL NOT leave without it. She will not get into the shower without it. She will not get on the bus without it. God help us if we lose it.

She recently threw one out the window on the freeway. I would have stopped for it if we hadn't been on the freeway. Really. It's that important to the peace in our home. It is VERY difficult to get her to attach to a different "wipe". Same brand. Same color. One touch...one smell (yes, she smells it)...one taste. In the mouth it goes. If it's not the "right" one it's all over but the crying. Usually I am the one crying. She's screaming. Ok...ok. Slight exaggeration. But you get the point. The "wipe" is an EXTREMELY important part of our family.

And lastly there is some tantruming. And it concerns me because at 8 she stands to my shoulder. No lie. My shoulder. And weighs 70 lbs. Right now it's manageable. In a year or two or ten...not so much. Fortunately the tantrums are not frequent. For that I'm thankful.

Well...that's all for now. There are so many things I want to tell you. Like about Alyssa's wedding. And Victoria's wedding. And my wonderful grandson. And my little place in the country. And many, many of Julia's day-to-day adventures. But I have been pecking away at my phone for well over an hour to share the little I have! I hope all is well with each of you and that life is treating you well. For us, in the great shake-down of life, we find that our good days FAR outweigh our bad days. No complaints here!

Many blessings to all!!!!!! :)

2011-09-19T08:49:00.001-07:00

Yaaaaaaay!!!!!! :)

Julia Solves a Problem

2009-05-06T16:51:00.000-07:00

Julia dearly loves to eat baby wipes. Don't ask me why...we have been trying to figure this one out for years. It must be the flavor since she also likes the taste of soap.

Now...what goes in must come out which is not always pleasant for Julia or the one doing diaper duty that round, so we try our best to keep the wipes away from her. For a long time now we could keep them on top of the fridge and she couldn't reach them...until now. I was sitting in the family room when I heard the sound of a chair being dragged across the kitchen floor. As soon as I saw what she was up to I grabbed my handy-dandy phone and took these pictures:

"I'm not quite reaching them..."

"Just a li-i-i-ttle higher on my tippy-toes..."

"Ahhhhh...SUCCESS!!"

"Oh! Hi, mom!!!!"

So...Julia solved her problem...how to get the wipes. Now I have to solve ours...finding a new place to hide them!

Mock PT Clinic at CSUS

2009-03-19T13:55:00.000-07:00

Julia was invited to participate in another mock PT clinic at CSUS this spring. She has participated in two other clinics several years ago, but has not recently been able to attend. It is very exciting for Julia to recieve this opportunity. Her former PT, Michelle is a professor at Sac State now, and gave us this chance. The clinic began last Thursday, but we were attending Rush and Brittany's wedding :o) and weren't able to be there. Julia was home sick...she didn't even get to be at the wedding :o(.

So...today we met the students who will be working with Julia for the next 2 months. They are Travis and Heidi, and Julia gave them a run for their money today! She is definitely opinionated and was not in a compliant mood. Sigh.

Julia is extremely jealous over Michelle and was NOT HAPPY that Michelle was working with other kids! It's kind of like the school bus thing...we can't convince her that EVERY bus is not HER bus. I don't know how to get her to understand that Michelle is LOTS of kids therapist! She thinks Michelle is hers exclusively.

Here's something kind of neat...there were toys there that Michelle used to bring to our house when she worked with Julia 3, 4, even 5 years ago and JULIA REMEMBERED the toys! It was amazing. I wish so much sometimes that I could get inside her brain and know what she knows...understand what she understands.

I DO NOT think that she is as cognitively impaired as it seems she is. I think she understands, remembers, calculates much more than she is able to express to us.

I TUTE!!!

2009-03-08T22:39:00.000-07:00

This last week we had our church's annual No Limits conference. I help in the hospitality suite and had Julia with me one morning. She was hungry and asked me for a donut. She was very insistent that it be a SHOCK-YIT (chocolate) donut. Wanting her to have something healthy I also put a strawberry on her plate. Please keep in mind that the strawberries were right out of the fridge.

Julia was going to town on her donut when I offered her the strawberry. She bit into it and then said:

"Mom! No! I SHOCK-YIT!!"

Being the pushover I am I gave her another bite of donut and then offered her the strawberry again. She bit down and then pulled away and said:

"No, mom! Berry code!!" (berry is cold)

The neat thing about this is that Julia was able to communicate what she wanted AND tell me WHY she DIDN'T want something. YAY, Julia!

While we were sitting there some people came in and were making over Julia...complimenting her on her dress, hair, etc. After listening to them for a minute or so Julia looked at me with a knowing look and said "I tute!" (I'm cute!)

We all laughed...but inside I was amazed that she could translate their compliments into a positive comment about herself. Distill them down, if you will, and express to me the essence of what was being said. YAY again, Julia!!!

Oh...and she did eat the whole strawberry...after it warmed up!

Reasons to rejoice...

2009-02-25T19:23:00.000-08:00

Just counting a few of our many blessings!

JESUS CHRIST has blessed Julia beyond our ability to express to you! I firmly believe that he has answered prayers, blessed, strengthened, healed and touched Julia's life. Thank you, Jesus!
Julia commicates! A lot.
Julia walks.
Julia RUNS!
Julia is a fully integrated member of our family, church, her school and our community.
Julia has a great sense of humor.
Julia plays games, comments on books read to her, solves puzzles...all higher level cognitive skills.
We are still great friends with Julia's former PT Michelle, and OT, Teresa...for 6 years now! YOU ARE BOTH WONDERFUL and WE LOVE YOU!
Julia has a great school to attend where she is nurtured and challenged.
Julia has a great bus driver this year...thanks Martha!
Julia is cheerful, fun-loving, affectionate and playful.
We just recently re-connected with Andrea and Hailey, who first introduced us to the beautiful side of Cri du Chat.
Julia is loved and nurtured by 6 brothers and sisters, 2 uncles, 3 aunts, 4 grandparents, 7 cousins and a host of extended family, friends and adopted siblings, aunts, uncles and grandparents. I firmly believe that all this love has made the difference.
Julia is creative...just try to hide the baby wipes from her! She will find them. And once she does, she will devise a way to get them!
AUNT OLGA and EMILY!
Julia has a great appetite and eats everything we do. She is 4 feet tall and weighs almost 50 pounds at 6 years old! Her reflux issues have been completely resolved and...
Julia takes no medications!
Julia is able to participate in Project R.I.D.E. (therapeutic horseback riding for the disabled) weekly. She LOVES the horses!
Julia has truly unique relationships with each of her siblings, her daddy and me. It is so neat to watch her positive interaction with each of us.
UNCLE TIM and AUNT KIRSTEN, McKENZIE, TREVOR and NOAH are going to be here NEXT WEEK! We are ALL excited about this!
Most importantly we know that Cri du Chat has not robbed Julia of being a person. It has created a truly wonderful, unique little girl. Like a wise grandma once said about her granddaughter who also has CDC: "While we long for her to have a 'normal' life, we would not trade her for any 'normal' child in the world!" That about sums it up!

Communication

2009-02-17T23:10:00.000-08:00

I have always prayed that Julia would be able to understand, but not just understand...that she would also be able to EXPRESS to us what she understands and how she feels. Lately we are seeing so much more actual conversation from Julia...expression of complete ideas. It is exciting to watch her.

Here are some typical conversations:

Julia: Mom! Pease! 'Mon!!! (Mom...please...come on!)

Me: What, Julia?

Julia: Mom! Nana pay dame! (Mom...Susanna's playing the game!)

Me: Oh, Susanna is playing the game?

Julia: Yas! Mom! Nana Oo-ee-ah pay dame! (Yes! Mom...tell Susanna to let me play the game)

OR

Julia: Mom! Ee-ah ky! (Mom...Olivia is crying!)

Me: What? Why is Olivia crying?

Julia: (Demonstrating on herself) Me pu air! (I pulled her hair!)

Me: Julia! That's not kind! What do you say to Olivia?

Julia: Sowwy. (Sorry.)

Sometimes it's like this:

Julia: (Running to me) Mom!! Mom!! Sowwy! Sowwy!

Me: What did you do, Julia?

Julia takes me by the hand and shows me the mess...towels pulled out on the floor, water spilled, the tub overflowing...you get the picture!

Me: Oh, no, Julia, you made a mess. You have to help clean up.

Julia: K (Okay) and actively involves herself in trying to help. Sometimes I can see where she has already tried to clean up...towels where she has tried to wipe up water, for example.

And finally:

Me: Julia.

Julia: What?

Me: Why are you throwing your books on the floor?

Julia: Cuz. (Because.)

Me: 'Because' isn't a reason!

Julia: Oh. (looks perplexed)

Me: So...why are you throwing the books on the floor?

Julia (looks thoughtful for a moment and then says decidedly): CUZ!

The flip-side is that when she is at school she DOES NOT SAY A WORD!!!! Not a WORD! They are able to bribe an occasional response out of her with fishy crackers or some other edible treat, but Julia does not communicate much outside our family. In fact, Julia will count from 1-10 with very little (if any) assistance as she climbs or descends the stairs at home, but did not meet her school goal of counting from 1-5 WITH PROMPTS for her teachers at school.

While I understand this, it does bother me. I want Julia to be able to express herself to other people as well as her family.

To be fair, I have to note that Julia changed classes this school year. She went from being the most verbal (!!!!) kid in her class to being in a class of kids that is 3 times as large with lots of kids who are older than she is. Many of the kids in her class are not as delayed in regards to speech as Julia is. S0...a new environment, some new classmates (a few familiar kids moved with her last fall too), and new teachers. Add to this Julia's 5 second processing delay between stimulus and response and all of these things conspire together to produce the silence we are seeing at school.

Her teachers are great ladies and they are working hard to get Julia to be more interactive at school. We have recently re-introduced Julia's communication devices (Big-Mac switch and 4 choice switch) in hopes that they will help her communicate more effectively outside our home. I am reconsidering PECS or some other picture-type program that will help Julia's communication.

The bottom line is that Julia DOES communicate! She can express her wants, dislikes and emotions! This is more than we were encouraged to hope for in the beginning and we are so THANKFUL that she is the bright, charming little girl she is.

SHOCK-YIT!!!

2009-02-07T16:40:00.000-08:00

The other day Julia was just tooling around the house waiting for the school bus. She saw the cats meowing at the back door for their breakfast and came to me shouting: "MOM!!! MOM!!! Cat eat!!" I asked her if she wanted to feed the cats breakfast. She emphatically replied "YES!!" This is normally Olivia's job, and she had neglected to tell me that she had used the last of the cat food the previous day. I asked Julia what we should feed the cats and she promptly replied "SHOCK-YIT!!" (Chocolate!) We all laughed and told her that cats don't eat chocolate. She was a little confused about this...I mean, chocolate is her favorite thing ever! Why don't CATS eat chocolate?

Later that day I bought cat food and she fed the cats when she got home from school. The funniest thing is that now and then she will come up to us and say "Cat...shock-yit!) and then she just laughs at herself! She is the cutest little girl ever!

Cookie, please!

2008-09-09T13:00:00.000-07:00

I haven't posted on any of the blogs for almost 2 months. One reason is I spent 29 days in Oregon. (Last of July and most of August!) My kids graciously sent me to visit my dearest friend for my birthday and I spent 19 glorious days with the Kings in Coos Bay. We had a fabulous time! I spent 12 days at home before returning...this time WITH my children...to spend another 10 days. This post is about something Julia did while we were there.

One of the things that we did during the second visit was participate in a Music is for Kidz production at the church the Kings pastor there. Julia was able to be a fully integrated member of the cast and it was wonderful to see her interacting with new children and adults. On Saturday, after a week of practices, we had a pizza party for all the kids and helpers. Everyone crowded downstairs into the multi-purpose room and Amy Jo made the following announcement:

"Listen up everybody...you may have seconds on the pizza, but you have to show an adult your empty plate before you can have a cookie."

There was the normal hustle-bustle of 25 children and 8-10 adult helpers as she told the kids this. Julia did not seem to pay attention to Amy Jo and those of you who know Julia well understand how distracted she is by any visual or auditory stimulation.

Julia got her piece of pizza and sat down at one of the tables to eat. A few minutes she walked into the kitchen and up to Amy Jo and me. She handed Amy Jo her empty plate and then patted my arm. Pointing to the cookies (0n the other counter) she asked me "Pease?" (Her approxomation of the word please.)

We were floored! Julia not only heard Amy Jo's announcement, but she processed it, understood it, and after a 10 minute delay remembered and acted on it! WOW!!!!

Oh...and Amy Jo gave her TWO cookies!!!!!!!!!!

Ite back...

2008-07-14T18:17:00.000-07:00

Today Julia shook her finger at me and told me "Ite back!" She was going to the next room for a book. When she came back to us she smiled and proudly announced "Mama...Oo-ee-uh ite back!" (Mama, Julia right back!)

We burst into gales of laughter...these little things probably don't seem like much to the parents of typically developing children but to us they are pure joy! We are thankful for EVERY BIT of deliberate communication we get from our Julia!

Fetch and Carry...

2008-07-08T12:20:00.000-07:00

Last night Julia did the neatest thing! I was upstairs in my bathroom cleaning and I said to Julia: "Julia, please go down to the laundry room and get mommy the broom." I didn't expect her to do this, but I try to talk to her like I do all the children and involve her in what we're doing. I kept cleaning and she headed out onto the landing. The lower floor was dark and so she came back to me and said "dahk." I said "It's ok, Julia." A few minutes later I heard banging and a triumphant Julia came into my room carrying the broom! As small as this seems these are the steps it took for her to do this:

Hear and process my request
Go out and see that it is dark downstairs
Come back and tell me that it is dark
Go back out and climb down the stairs
Go through the living room, dining room and down the hall in the dark
Open the laundry room door
Turn on the light (I found evidence of this)
Select the broom from our tools that include a mop, a broom and a push broom and several other cleaning implements
Carry the broom back through the house and up the stairs
Present it to me

Pretty awesome for any 5 year old...especially our special one! Go, Julia!

More fun at the park...

2008-07-03T19:06:00.000-07:00

Julia has a great time at the park...

2008-07-03T18:58:00.000-07:00

I uff ooo!

2008-06-02T20:43:00.000-07:00

Two days ago I was standing at the stove cooking dinner and Julia came over and hugged my leg. This is a common occurrence...but what she did next is not. She said "Mom-eee...I uff ooo." To an untrained ear this may sound like a lot of nonsense syllables but I understood them immediately. After working on getting her to repeat "I love you" to me for the last couple of years I know her enunciation very well. And although "I uff ooo" may seem like a long way from "I love you" to me it was clear and perfect!

You stink!!!

2008-03-27T19:01:00.000-07:00

No doubt about it...Julia has this great sense of humor! Today Victoria got Julia up from her nap and she had a dirty diaper. Victoria was changing Julia's diaper and teasing her by saying "Oooh, Julia...you stink!" Quick as a blink Julia yelled back "NO! YOU 'tink!!!" We were all suprised and kept egging her on. Julia got to laughing and telling us that we "'tink"!

Will this behavior be funny in 10 years? Probably not...but today it was hilarious!!!

Julia celebrates Julia!

2008-03-26T11:31:00.000-07:00

The funniest thing happened yesterday. Victoria was browsing through Julia's website. Julia came over and wanted to get up on her lap. Victoria picked her up and kept looking at the pages on the website. Julia sat there for a minute, just grooving to the music when suddenly she became very excited. She started shouting "Ooo-eee-uh! Bay-be Ooo-eee-uh! Meeee! Meee!" She had seen a picture of herself as a baby on the page and identified herself! She was so funny...clapping, shouting, laughing and pointing to herself.

Victoria took her through the pages and she amazed us by identifing -by name- the vast majority of people in the pictures...even folks that we don't know well or see often. It was a very "connected" moment for her cognitively. Not only was she able to pull up the information mentally, she was able to verbally express what she was thinking.

Yay!!!! Go, JULIA!!!

More than a little scary...

2008-03-24T17:56:00.000-07:00

On January 5th I noticed that Julia was running a fever. After several hours of fever that didn't respond to medication David and I decided that we had better take her in to the emergency room. This was not something I was looking forward to...I figured that they would tell me she had the flu and to keep her hydrated.

Thank God we took her in! I will spare you all the details of our 14 hours in the ER, but the final diagnoses was that Julia had a ruptured appendix. At 4:00 PM (diagnoses at 2:30 PM) on the 6th she had surgery to remove her appendix and clean up the infection that had already filled her abdominal cavity. We were so blessed that the surgeon on call was a fabulous doctor...one of the best! And also thankful that the ER physician is a wonderful doctor! She stayed after her shift to make sure that Julia's tests were completed and that she received proper treatment!

Julia stayed in the hospital for 8 days on IV antibiotics. This was a loooonngg time! I stayed with her and did not leave the hospital at all until we went home. Thank God for my great family...my older daughters took care of Olivia and ran the house! Our church family provided meals for us for the entire time that Julia was in the hospital...no mean feat for a family of 8!

One of the great things that happened while Julia was in the hospital was that she was introduced to Greta, a canine companion who visits the children who are staying there. Greta's handler encouraged me to apply for a canine companion for Julia. Julia really does need a watch dog...she gets away from us and one incident even involved the police...that's another post. So, now we are in the planning stages of Julia receiving her very own canine companion! What a blessing! Her companion will help us to keep track of her whereabouts, bring her home if she gets away from us, track her by scent if she is out of sight, protect her around strangers and water and alert us if she needs help.

Many thanks to everyone who sent cards and food, who prayed for and with us, who took my family to church while I was at the hospital, who called and laughed and cried and rejoiced with us. We would not be complete without each of you!

Most of all we say thank you to our Lord Jesus...Dr. Marr told us that "12 hours would have made a difference in the outcome." He didn't interpret that for me, but just the sound of it is scary...thank you Jesus for keeping your hand on Julia! Except for a scar on her tummy you would never know that she was desperately ill just a few weeks ago!

Well...it's about time!

2008-03-24T17:13:00.000-07:00

It has been over a year since I last posted on Julia's blog. Shame on me! So many great moments have come and gone that I know I will never remember...if only I had immortalized them on this blog before they slid away into the ether. Does this mean I will do better next time? Probably not. Time is so scarce around here!

Julia is making incredible progress. Her website is a great way to keep up with her, and only requires that I update twice a year to be current and not feel guilty. However, that update was due in January, and it is March...go figure!

Julia has lost 6 teeth now. She definitely has that little girl snaggletoothed smile. She is not a baby at all any more...except for the diapers. No bottles, sippy cups, binkies...all the paraphernalia of babyhood is gone. I do use Baby Magic Original scent lotion on her after every bath, though, and will continue to do that till she's a teenager! Love that stuff...and I am thankful for an opportunity to indulge!

School is great. Julia is in her third year in Miss Lisa's class. I love the fact that she is with the same teacher's and, for the most part, the same students year after year. She loves school and busses both directions now. She was allowed to attend full sessions starting last fall...a full 4 hours of school daily. When she began at Jessie Baker her attention span and stamina were so low that she could only function for an hour and a half of school every day. Now she goes the whole time and is a fully integrated member of her class.

Speech is improving daily. We are so thankful for all of her communication. Julia is a very persistent and deliberate communicator. She knows what she wants to say and doesn't give up till we "get it". Yesterday David was playing with her and he tickled her under her arm. Julia immediately said (clear as a bell) "Ahm-pit...dad...stop!" We died laughing.

I have always been concerned that Julia would not be able to express to us when she didn't want something. That "no" was something she didn't truly understand. It's funny, but my personal motto has always been "Don't borrow tomorrow's trouble." Spending ANY time worrying about that was definitely borrowing tomorrow's trouble! Julia fully understands how to say "No!" and what it means! We can ask her to do something...give a kiss, for example...and she will shout "NO!" and run the other way. Or we can ask if she wants something...like going outside...and she is quick to say "Yahss!" She will even second-guess herself and change her answer if she realizes she's saying no to something she really does want...like Pepsi! So, our Miss Julia is a great communicator...and we are very thankful!

WALKS ALONE.....November 21, 2006

2006-11-22T18:27:00.000-08:00

On Julia's website there is a milestones page. I created the page in November of 2003...right before Julia's 1st birthday. The last milestone listed is "Walks alone". Over the last 3 years we have watched Julia achieve one milestone after another. We rejoiced when she smiled, rolled over for the first time, pulled to stand, crawled and said her first word.

Yesterday I cried all day. Julia walked more than she crawled or scooted. She walked with no assistance whatsoever...no hand to hold, no walker, no support of any kind. She walked all over the house and over and around obstacles. She even navigated through a crowd of people after church service last night. It is only fair to point out that most of the people stopped dead in their tracks to watch her...it was amazing, and more than one tear was shed. So many people at The Rock Church love Julia and our family, and have supported and encouraged us unconditionally.

I was so overwhelmed to be given this gift the week of Thanksgiving. I feel that as of 11/21/06 Julia is officially WALKING! She has taken many independent steps before now, but never has she chosen to walk (without our encouragement)when she could crawl!!! Yay, Julia!!! Yay, Auntie Michelle!! (Julia's former PT who is still very invested in Julia's progress and has become a part of our family) Also, many thanks to Cheri who has taken over Julia's PT work in the last 2 months.

And most of all, thank you, Jesus! It's no mistake that the song we chose for the milestones page says "Count your blessings, name them one by one...count your blessings, see what God has done!!"

Too sweet for words...

2006-07-11T01:03:00.000-07:00

Always sisters...always friends!

It has been such a long time since I posted on any of our blogs...life is insane for us during the summer! Hopefully, now that Ladies Retreat, Kidz Musical, C.O.D.E. conference and Senior Camp are over, I can get back on track! I wouldn't trade one activity! I am thankful for all that God allows us to do, and for my precious husband who, although he is not a believer himself, encourages us to be involved in many different activities.

Julia is making awesome progress in so many areas! To get the full picture, check out the June update on her website: Celebrating Julia!

Julia is now combining up to 3 VERBAL words in a sentence! Granted, they are word approximations, such as "mo" for "more", but we understand her, and she has finally "gotten" it...she can TALK to us! It is the neatest thing to hear her little voice say "Mo, mama, pease!" We do rejoice over this achievement ("We're so sorry, Mrs. Ezell...but Julia will most likely be non-verbal..."), and are also thankful that her signing vocabulary is now over 60 words, used consistently and appropriately! Thank you, Jesus!

Julia is becoming quite proficient in her walker...but the sweetest thing is when Olivia helps her steer! How blessed we are to have been given such a sacred trust...all seven of them!

The most wonderful friends on earth...

2006-03-19T21:54:00.000-08:00

Adam, Trevor, Kirsten, Tim, Emily, Noah and McKenzie King

This is a picture of our wonderful friends the Kings! Tim, Kirsten and their children, Adam, Emily, Trevor, McKenzie and Noah are the dearest people in the world!

Tim and Kirsten have recently written a parenting book entitled "Helping Your Child Become". This is a timely and wise book that comes highly recommended to Christian parents everywhere. They also do Family Ministry conferences, retreats, revivals and seminars. Their children eximplify all the principles they teach, and I can say first hand that they are absolutely genuine people...no facades here!

The reason I post this on Julia's blog, is because they have been so integral in Julia's development from the first day, and love her as one of their own. (As they do all our children!)

We love the KING family!

Offering Support...

2006-03-17T13:25:00.000-08:00

Aunt Kirsten and Julia when Julia was17 months old

Last week I was asked to speak to a local MOPS (Mothers Of Pre-Schoolers) group about offering support to families who have a special needs child. The leader of the group had gotten our name from the Easter Seals corporate office. Julia is a former ambassador for ES, and is still asked to do occasional events for them.

I was nervous, but comforted by the presence of my dearest friend, Kirsten, who attended with me to hold my cold and clammy hand...even if it was only in spirit! (A word here about our friends the King family. Kirsten is my best friend, and has been for almost 20 years. We have birthed our babies together, sewed together, worked through parenting issues together, laughed and cried together and supported each other through thick and thin. They are Uncle Tim and Aunt Kirsten to my kids, and we are Uncle Dave and Aunt Beth to theirs. Tim is a source of support that we would feel so lost without...they both are extremely aware of our older children and are always "filling their cups" with positive words and loving actions. The King children (Adam, Emily, Trevor, McKenzie and Noah) are like our own...and are our kids best friends. Without the Kings we wouldn't be the people we are!)

The response from the women at the meeting was overwhelming...many do know families with special needs kids, and want to reach out to them, but just aren't sure how. This got me to thinking, and I want to post some tips on offering support to families who have a member with special needs.

I can only speak from my own experiences, so these suggestions may not apply universally!

In our case, the kind of support we needed evolved over time. In the beginning, Kirsten held my hand through everything...doctor's appointments, the geneticist appointments, Alta (social worker), therapy, and educated herself in order to "spoon feed" me info about Cri du Chat Syndrome. I was so overwhelmed by the negative information we had received when Julia was born that she was four months old before I got online to research Cri du Chat Syndrome myself. Kirsten spent a lot of time learning about CDC and giving it to me in bite-sized chunks.

How can you support the families that you know?

Be open and available...approachable. Allow the family to express emotions without having to validate them...just listen!

If you are someone who is knowledgeable about special needs, don't assume that your insights will be welcomed at first. The family needs time to acclimate to the idea that their child is not typically developing. They do not want to be told that this is the best thing that ever happened to them, or that they will love all the new things they will learn. They will eventually come to this knowledge. Right now they need time to grieve the loss of the child they expected to have, and time to embrace their baby and his condition.

Realize that the parents are going to be very focused on the new dynamics of their family. They probably will forget things like birthdays, golf dates, and coffee dates. They are very absorbed in assimilating all the new information they have recieved, and deciding how to react to it. Don't be offended if the conversation is redirected to their situation often. It is what they are thinking about, and most likely, what they are talking about too.

Don't be afraid to ask about the child, how the family is doing, the doctors reports, etc...most families, especially moms WANT to talk about this new journey they are on.

Educate yourself about the disabled child's condition...but don't repeat to the family any negative information you may glean...they have already heard it from their professionals. Try to pull out the positive things. Kirsten was so good about this. She was always trying to find a positive way to look at Julia's diagnoses. Even when all the information we had was negative, she would put a positive spin on her words..."Children with CDC can have IQ's in the 30's, they can learn to walk and communicate, they can live an average life-span, etc.)

Encourage the parents to focus on what their child CAN do IN SPITE OF their disability...not on what they CAN'T do BECAUSE of it. 'Nuff said!

Learning about the child's condition also prevents the parent from having to explain things to you...they are explaining things to EVERYONE...be the exception!

Focus on the positive...no matter how negative the attitude of the parent. Don't be a "Sally-sunshine"...be sincere, but notice the beautiful blue of the baby's eyes, or the soft hair on the back of her neck. All children are beautiful! As Julia's pediatrician told me the day she was born: "God does not make everyone alike, and God makes no mistakes!" This is exactly what I needed to hear. Another comment that was made by one of Julia's professionals that completely changed the way I looked at Julia was made by her geneticist, Dr. Eswara. He told us that "Uncertainty is not a reason for fear. Uncertainty is a reason to hope." Ponder that for a while! It is amazing!

Many special needs children require huge amounts of hands-on time. Help with this. There are many ways to contribute. Ie: taking the child to therapy, working on therapy follow-up with the child in the home, doing household chores, laundry, or providing simple meals. One family brought us KFC the during the week after Julia was born. Another had pizza delivered to our house. It was wonderful not to have to think about what we were going to eat!) Most parents of special needs kids have in inordinate amount of guilt. They feel guilty about the amount of time their special child requires, and how much it takes away from their typically developing kids. Every moment they aren't serving their special needs kid, they feel guilty about not "redeeming the time." (Often we are given a "optimal development" time-frame...get as much progress in the first 3-5 years as you can, etc.)

"Fill gaps" with the siblings of the disabled child. Take them along to the library when you take your kids, to McDonald's for a Happy Meal and a romp in the play area, take a small treat to the typically developing child (game, book, puzzle, coloring book) and take time to enjoy it with that child. Kirsten helps us by taking Julia to therapy if there is an event for one of the older children that conflicts with Julia's schedule. She and her family also babysit so we can do things with our older children that Julia may not enjoy.

Provide older siblings with a "safe" place to express how they feel. My older children all love Julia, and most of them have stated that they want to have or adopt a special needs child when they grow up and have their own families. Three of my older kids want to become therapists, and postively impact the lives of people with special needs. But I can tell you that they didn't start out this way! They ran the gamut of emotions from anger to fear, and I am glad that Tim and Kirsten always have provided them with a safe, confidential sounding board for their emotions.

Help the family maintain normalcy as much as you can. Most families long for their disabled child to have "normal" experiences. Facilitate these...birthday parties, outings, family gatherings. Work to include the special needs child.

A very special Christmas tradition we have is going to look at Christmas lights with Tim, Kirsten and their children. Julia was born on December 10, and I can tell you that the last thing I wanted to do was look at lights that year. Kirsten knew, though that our family needed to maintain some semblence of normalcy. She called me and invited us to keep our traditional outing. I did not want to go and said so. Kirsten was sweet, but insistent. She pointed out to me that my older kids needed to look at lights. That Dave needed to look at lights. That, even though I didn't know it, I needed to look at lights. And that she would be there to pick us up at 6! It was not an easy thing to do...walk and smile and laugh like everything is "normal" but you know...it was just what we needed, and it is one of our few truly happy memories of the first few weeks of Julia's life.

Be sensitive to the child's/family's needs when they visit you. Julia has sensory issues, and needs frequent time-outs from too much noise or visual stimulation. I am thankful for friends who offer us a quiet place to go (a bedroom, or den) and regroup during a gathering. This enables us to take a break and come back and enjoy the festivities. If we aren't able to do this, then Julia's behaviors escalate into a full-blown meltdown and we have to go home.

Rejoice with the family! The Bible tells us to rejoice with them that do rejoice and weep with them that weep -Romans 12:15. The Kings (Tim and Kirsten and their children) have jumped up and down with us and done cartwheels over the smallest of accomplishments...like the first time Julia was able to isolate a finger. She did this by sticking it up her nose. We were still thrilled...after all, we had been working on this OT goal for months! Or the fact that one of Julia's first words was "Puh-puh" (Poo poo.) It didn't matter that she was talking about stinky body functions...we were excited that our non-verbal child was communicating verbally! As usual the Kings handclapped with us and praised, praised, praised Julia's efforts. And, just as Romans 12:15 admonishes, they have shed plenty of tears with us also.

BE THERE...even when you're not. What I mean by this is: be someone that the family feels they can call at any time for any reason. There were many, many times I did not call Tim and Kirsten. There were many, many times that I did not go by their house. But I drew great strength and comfort from the knowledge that I could if I wanted to. Believe me...there were plenty of times that I did!

Supporting families you don't know:

Everyone is different...it's a gamble! Be prepared to be rebuffed...but understand that the good you may do in offering support far supercedes the potential for any embarassment you may experience if the family is not "open" to you.

Don't be afraid to acknowledge a disabled child. The parents are already painfully aware of their child's challenges. They already feel like their child is being noticed. Acknowledge the child in a positive way. COMPLIMENT the child. If appropriate talk TO the child, not just ABOUT the child.

Be patient with responses. Some folks may be very open about their child, others may not be.

Teach your children that God creates everyone different and we are not all the same. Questions are ok...but ask them privately. Tell them to say kind things to or about the child. (Abraham Lincoln once said "If you look for the good in mankind you will surely find it." There's always something nice that can be said!) Kids are naturally curious...it's OK!!! Some of Julia's most ardent supporters are children we know at church. It is rare for a service to go by that Julia is not bombarded by children who want to talk to her, hug her, or help her use her walker. There is no way to measure the ways this has benefitted Julia! She loves those kids!

Encourage your children to reach out to kids that are different than they are, and to value them.

Support programs and fundraisers that benefit the disabled:
Easter Seals
Project R.I.D.E.
Special Olympics...and there are many more!

Learn a few baby signs...lots of disabled kids use sign language, and are thrilled when someone "speaks" their language!

Kindness NEVER comes amiss! Every parent wants to have nice things said to and about their child!

Intentional Communication

2006-03-16T19:31:00.000-08:00

Very early this morning I heard Julia "talking" in her room, so I went in to get her. I took her back to bed with me and as we lay there I began to talk to her about her day. I was amazed at how much she understood!

Me: Julia, do you know what we're going to do today?

Julia: Shakes head no

Me: You're going to go to school!

Julia: (5-10 second delay) signs "school-Lisa (her teacher)-work"

Me: Yes! That's right! You're going to school to see Miss Lisa and you'll do some work there. Do you want to go to school?

Julia: Nods yes

Me: Then do you know what we're going to do?

Julia: Shakes head no

Me: After school we're going to see Miss Stephane. (Speech Therapy)

Julia: Puts her finger in her mouth (her sign for oral motor work) and signs "work"

Me: You're right! You're going to work with Miss Stephane on talking and signing. Do you want to see Miss Stephane?

Julia: Nods head yes

Me: Then we're going to Easter Seals to see Michelle! (Physical Therapy)

Julia: BIG grins and claps

Me: Do you want to go play with Michelle?

Julia: Vigorous nodding and clapping

Me: AND you're going to go swimming with Michelle. Do you want to go swimming?

Julia: Vigorous nodding, clapping and loud vocalizations.

SO...all of this from a child that wasn't "supposed" to communicate much, if at all! HA!!! I am so thankful and proud of Julia!

One last incident:

Last night in choir practice Julia was having a drink from a water bottle. We had to stand and go over a part and so I put the water away. While we were standing she began to sign for "drink" over and over. I told her that I would give her a drink when we sat down.

Normally this would not deter her...she would continue to sign until she got what she wanted. I was surprised when she stopped asking for a drink. It took several minutes for us to finish the part and sit down.

THE MINUTE we sat down Julia tapped me on the arm and signed for "drink."

I'd say she understands...wouldn't you?!

JUST GOTTA TELL THE WORLD...

2006-03-09T21:36:00.000-08:00

Today in PT at the Easter Seals Clinic, Julia blew us all away when she took SEVEN TOTALLY INDEPENDENT STEPS!!!!!! Michelle (PT) was "shadowing" her closely, but she was not touching her AT ALL when Julia walked towards me!!!! Of course, we didn't have the camera handy, and even if we had it happened so quickly I don't think we could have gotten pictures...but it will forever be emblazoned on my memory...trust me!!!!!

I know this doesn't mean that she will be running marathons next week or anything, but it demonstrates so much progress we are thrilled.

Something I am learning is that all of the body's systems are completely integrated and affect one another. Julia's fine motor and speech cannot significantly improve until her trunk is stable and midline is integrated. All of the "fine" skills grow out of stability in the gross motor skills. If all her attention and energy is directed toward just keeping herself upright or balanced there is little left over to focus on speech or controlling her arms, hands and fingers. I realize this is a very rudimentary explanation of a concept I am just beginning to understand myself.

Either way...JULIA TOOK SEVEN INDEPENDENT STEPS TODAY!!!!! HOORAY!!! Handclaps, cartwheels, high-fives and all that!!!!

Oral Motor Tips

2006-02-22T11:06:00.000-08:00

Julia at 17 months with her Chewlery

I have noticed that I am getting a lot of email from Julia's website about oral motor. I wanted to do a post about oral motor and some of the tips that help us with Julia's inappropriate oral behaviors.

These are a few things that have worked for us...Julia is extremely oral and will bite/lick/chew anything she can get her hands on including the cat! She bites herself, pulls out hair to run between her lips, chews rocks if she can get them...it makes for some interesting situations! She also is a dedicated teeth grinder.

We have found that these tips help us to manage the negative oral behaviors, and have been gleaned from a variety of sources...her therapists, various seminars we have attended, and other parents of children with CDC.

While these things may help us to manage the behaviors, I find that the most successful way is to find what is driving the behavior...is she bored? frustrated? angry? Is she "coming down with a bug"? Is she feeling insecure or stressed? These are comfort behaviors...why is she uncomfortable? When I am proactive in discerning her needs and meeting them, we have fewer instances of negative behavior!

So here are some of our tips!

We offer a variety of textures for her to mouth such as: bumpy/smooth hard/soft firm/chewy warm/cold, etc. These are foods and other objects as well.

Chewlery and Chewy Tubes, also aquarium tubing, an 8 inch piece goes a long way!

DENTAL FLOSS is wonderful…she will run it through her mouth for 10-15 minutes at a time…never the whole thing in her mouth…just pulls it through her teeth. We get the minty kind.

Popsicles!

Her vibrating elephant (heavier vibration than the star teether from Wal-Mart) is great when she’s being really oral. A few minutes is all it takes to give her lots of great input and slow down the mouthing.

Crunchy snacks (like crunchy Cheetos or cubes of peeled apple) are great when she’s grinding her teeth (which she does frequently.) Chewing them gives her the same heavy proprioceptive input to the jaw that grinding her teeth does. I think she also likes the sound of chewing crunchy things.

Chewing on a toothbrush is one of her favorite mouthing activities. We also use powdered "Tang" for more input. Just dip the damp brush into the powder...she loves it. I gently brush the insides of her cheeks and her tongue as well.

Nuk brushes, toothettes, tongue depressors, all are good tools to use in the mouth for stimulation. (I use them as taught by her SLP...I don't let her have these items!)

Lollipops and ice cream help tongue protrusion and lip closure.

Foods that we use for different reasons:

Strengthen suck and blow:
Orange wedges
Juice bars
Peanut butter
Popsicles
Lollypops
Lemonade
Tart juices
Food dips (like ketchup and ranch dressing –she sucks the dip off of carrot or celery sticks)

Increasing jaw control:
Toast
Cheetos
Dried fruit (raisins are a favorite and aid in pincer grasp also)
French Fries
Small pieces of chewy candy (well monitored!)
Apples
Cheerios

So...I hope this info benefits someone out there! It sure has helped us!

Project R.I.D.E.

2006-02-20T19:47:00.000-08:00

Project R.I.D.E. is a wonderful program that provides therapeutic horseback riding for disabled individuals of all ages (3 and up.) Julia has been a part of this program since she began school last month and absolutely LOVES her time at Project R.I.D.E.

In addition to helping improve Julia's balance and coordination, therapeutic horseback riding provides her with an excellent source of vestibular and proprioceptive input. The gait of the horse mimics walking motions for Julia, which (in theory) will help with motor planning for walking. (The repetitive motions of her legs moving up/down/up/down as she rides.)

Regardless of how she is being benefited physically, emotionally Julia is having a ball! She loves her time at Project R.I.D.E. and is developing great relationships with her sidewalkers, instructor, the horse handlers and the animal. She signs "thank you" after each session and has learned how to pat the horse's neck to tell him to "walk on." She gets very excited about this and often the sidewalkers have to tell her to "Wait, Julia, Poncho can't walk on right now." Considering that a few months ago she couldn't be in the same area with a large animal without having a meltdown this is great!

Our older girls (Victoria, Susanna, and Alyssa) all volunteer at Project R.I.D.E. at least once a week, and often more frequently. They love the time that they spend working and know that they are helping to make a significant positive contribution.

How blessed we are to have these great resources available to us.

www.projectride.org/ProjectRIDEDesc.htm

OUCH!!!

2006-02-20T18:33:00.000-08:00

It seems that every child has their share of bumps and bruises, but our Julia has over-extended her quota! Due to her poor balance and low muscle tone (she loses balance or her arms give way suddenly as she crawls...she can crawl very fast now!) she has had stitches in her chin 5 times. Most recently Saturday a week ago.

We have all hard wood and tile in the bottom floor of our home. Julia lost balance and banged her chin...hard. After 5 hours in the emergency room we went home with 11 stitches...3 inside and 7 outside.

Believe it or not...this is not the worst part of the story! I took her to her pediatrician on Thursday to have them removed and he felt they needed another day or so to heal. "We'll remove them Saturday." he said. He felt that the scar tissue was still weak and it wouldn't take much to split it open again.

Would you believe that by 6:30 that evening we were on our way to the emergency room again?! Her weak shoulder-girdle gave way and she banged her chin on the floor while crawling. I sobbed like a baby this time...it was so awful...all this blood and her poor chin looked (literally) like chopped liver.

This time they didn't even attempt to re-stitch her chin. The inside had healed to the place that it wouldn't knit together properly (from the first injury), and the only place that would heal together were the edges...which are too weak from all the scar tissue. Sigh. So now Julia has this large football shaped scar on her chin.

Yes...I know that in the grand scheme of things this is relatively minor...but right now it's big to us.

Puh-puh...GOOD GIRL!!!!

2006-01-14T16:56:00.000-08:00

The coolest thing happened in school last week. We have been TRYING and TRYING to get Julia to exhale with the sound for the letter "P", but all she would do is purse her lips...no exhale at all. We have tried all kinds of tricks to get this new sound, to no avail...BUT...!

Last week the letter of the week was "P" and her class did some fun activities. Julia (with LOTS of help!!!) glued and colored all her projects...AND MADE THE SOUND "PUH"!!! Now, I know that some of you may be rolling your eyes at my being soooooo ecstatic over this, but you have to understand how limited verbal language is for individuals with Cri du Chat Syndrome, and HOW LONG we have worked on this sound with Julia. She really likes the other kids in her class and tries to imitate them.

NOW for the cool part...that night I took her home and asked her to tell daddy what she learned in school. She made the sign for "school" and then looked at me. I said again "Tell daddy about school." She looked right at him and said "Puh-puh-puh"! We did a few cartwheels and clapped and she clapped too...she was very pleased with herself!!

Julia has also started to say oo-ee-uh, which is her pronunciation of her name. Miss Lisa told me that Julia had said her name and I was surprised. She says it at home, but not for anyone but family!

A couple of small steps...but a very tangible ones! Hooray for Julia! (And HUGE, GIGANTIC thanks to Miss Lisa!)

SCHOOL DAYS!!!!

2006-01-11T12:21:00.000-08:00

WELL! Julia began school last week and we are so pleased by how well she is doing. She really loves her teachers and classmates and signs for "school" in the morning when she gets up. It is funny that one week of attending and she is already in the routine of things.

Julia attends Jessie Baker Elementary which is an all-special needs school close to our home. There are 167 students enrolled between the ages of 3 and 22 years and all have special needs. The environment is such a warm and comfortable one...I am really glad that Julia was able to get into this program.

Miss Lisa is Julia's teacher and she is assisted by Miss Linda, Miss Karen and a great helper named Marcia. There are 3 other students in her class which makes the ratio of students to staff 1:1! Julia gets lots of personal attention in this wonderful atmosphere and is blossoming before my eyes! I'll admit that as a die-hard homeschooling family it was an extremely difficult decision to send her to school, but I definitely feel like it was the best choice for her.

At church last night a friend commented on how differently Julia was interacting with everyone, and on how her level of attention had increased. It is true. Julia is paying more attention to what goes on around her and is much more interactive with her environment. I think that the walking is making a big difference also...she is using her walker 75% of the time and I think she feels more independent and "in control". I have to admit that I have personally altered my way of looking at her. I don't see her as a baby anymore, and she is responding to our family treating her like a big girl.

So...all of my concerns were groundless...she is doing SUPERBLY well! Thank you, Jesus!

HO~HO~HO...and all that jazz!

2005-12-17T19:49:00.000-08:00

Yesterday I had to take Julia to see the doctor...104 degree fevers and MORE STOMATITIS...auugghh! But we are thankful that this course of antibiotics (sigh) is the first since last May. That is huge! It is a little sad that she's sick during this joyous time. We have so many family traditions that we enjoy every year, and she is missing a bit. We did go and get our tree, and get it decorated. Julia even "helped" a little. Next week we do the holiday baking and go on our annual "Light Tour" with our friends, the Kings.

Well, we had Julia's IEP meeting and it went extremely well. We were given everything we asked for...which is a comfort. Julia will be attending an all special needs school 5 days a week, and have 45-60 minute PT, OT, and Speech sessions once a week. Julia will also be able to continue working with her current PT, which means a great deal to us. Michelle will be Julia's only "carry over" therapist. I am glad that there will be at least one constant thing in Julia's services...she will see Michelle at the Easter Seals clinic during her normal time every week. ES doesn't offer ST once children graduate from the Early Intervention program to the school age program (NPA), and Julia will be seeing Stephanie, a therapist who is currently working with 2 other little girls who have CDC. This is a great opportunity for Julia...but we will miss Nancy dreadfully!

Julia's OT sessions will continue with ES as well, although with a new therapist. We are sorry that Julia isn't able to continue to work with Teresa, who has been so instrumental in helping us understand and manage Julia's sensory integration disfunction, and who has helped her achieve great progress in her fine motor goals. However, we have adopted her as "Auntie Teresa"...I mean, how do you walk away from someone who has worked with your child 1-2 hours a week for over 2 years? I see more of Teresa and Michelle than I do some of my blood family!

CDS services are also not carried over into the NPA program, but Julia's cognitive, social and emotional skills will be addressed during her time at school. We regret saying goodbye to Suzanne, who has made remarkable progress with Julia in the time she has worked with her.

January 3 is the RED LETTER DAY when Julia starts school. I am actually very excited about her attending Jessie Baker and about the wonderful people who will work with her. We have already attended one trial session and Julia enjoyed her time in Miss Lisa's class. So, we shall see!

Happy holidays to all of you in cyberspace...we pray that you and yours are blessed beyond comprehension!

Eye Surgery Update

2005-11-27T00:32:00.000-08:00

Julia's November 1st surgery (to correct lateral strabismus in both eyes) was postponed until the 7th because the hospital where the procedure was originally scheduled didn't have a pediatric intensive care unit. Although this was a little frustrating for us it was better in the long run. The surgery was performed at Sutter Memorial, which is where Julia was born. I was thankful that it had been moved to such a good facility. SMH has always taken such good care of Julia. With the amount of time we spent in the emergency room last year I felt as if we lived there. It's pretty bad when you walk into the ER of a hospital in a metropolitan area like Sacramento and everyone knows you by name! The guy at registration even memorized her birth date! Anyway...having surgery at SMH was like going home! We knew that Julia would receive the BEST care there...and we were right!!!

We had to arrive at the UNGODLY hour of 5:00 AM to check in for the 7:00AM out-patient procedure and do all the pre-op stuff. Julia was a trooper and played up till the time that she was taken away for sedation. The anesthesia was my largest concern...after her little trouble with chloral hydrate I was a teensy bit worried about her "going under." Thank heaven those fears proved groundless...she woke up a little ahead of schedule with a cheerful smile. We were all more than a little surprised. We were in the car going home by 10:30 AM.

Julia's eyes were red (very, very red...it was a little strange to see this blue iris rolling around in a bright red eye!) but she was back to her normal happy self within hours. The red faded over a period of days from red to yellow (like a bruise) and within a week it was as if nothing had happened. We never even gave her Tylenol after the initial dose immediately following surgery. She never fussed or rubbed her eyes much. We did use antibiotic eyedrops for 14 days. We are thankful that there was no sign of infection.

Her eyes are remarkably straight now and they are working together! Her skills have really improved...particularly walking in her walker and (our old nemesis) dropping objects at midline. It is amazing to see her reach out and place an object in a container as if it were nothing...we have been working on this skill for over two years. I suppose that it could be coincidence...or it could be the corrected vision...I don't know...I'll take it either way! It's probably a little of both!

We won't know for several weeks how successful the surgery actually was, but for now we see a definite improvement. We knew going in that there was a 30-40% chance of her needing a repeat surgery to fine tune things. With her level of hypotonicity there is always the chance that the muscles will need to be adjusted again. This is quite typical for individuals with Cri du Chat Syndrome.

I couldn't end this post without thanking Dr. John Tong and his staff at Medical Vision Technology. The level of service that they provide is far above par...they are wonderful. I can honestly say that I had no qualms about having Dr. Tong do Julia's surgery...he really is the best! And a big thank you to Deni who made all this happen on the scheduling end...we appreciate you!!

New stuff...

2005-10-10T20:29:00.000-07:00

Well...there are lots of new "happenings" in Julia's world!

We are gearing up for Julia's transition meeting and subsequent IEP meeting. Although I feel confident that she will receive the services that she needs there is still that "knot in the pit of your stomach" feeling that I get when I think about this meeting. All of Julia's professionals have gone above and beyond to make her transition a positive occasion and for that I am very thankful. So...on October 19 we will meet with the EGUSD and see what happens! I know that thus far every door that has opened for Julia has been right...and the doors that have closed have been replaced by better things. I fully believe that God's hand is on Julia and that He cares about her and all that happens to her. I take comfort in this!

On November 1 Julia is scheduled to have eye surgery to correct her lateral strabismus. This is another biggie...and once again we rest in the knowledge that God is in control of the circumstances! Hopefully after this surgery Julia's improved vision will translate into improved performance in all skill areas.

Julia's progress is remarkable...and we are so thankful! Her most recent evaluations reveal slow but steady gains in all areas. Communication in particular has really taken off...the other morning I got Julia up with the words "Are you Mama's girl?" She looked at me for a minute and then said (very clearly) "Mama baybee!" I asked her "You are Mama's baby?" and she said again "Mama baybee!" Needless to say it made my day! The signs for "Please" and "Thank you" are now fluid and automatic...she is a polite little girl!

Coming up on Julia's 3rd birthday (December 10) has caused me to stop and take a close look at her...in a way that I don't often have time to do. I have spent much time lately pondering all the progress she has made...the developments from being a helpless infant who couldn't roll over or raise her arms off the floor to play with toys dangling from a gym at 7 months to a little girl who climbs stairs, crawls on and off the couch, chairs, beds and pews at church and can walk in her walker for 20 yards. This is nothing short of amazing and I am so excited to see all that she is accomplishing. I am also quick to note that we didn't teach her all of this ourselves...although our love and desire to help Julia is unlimited, our knowledge and ability to help her is limited. Thanks to the many great people...therapists, doctors, other parents, friends, and supporters who help to fill the many gaps!

Till next time...

I lost a friend the other day...

2005-07-12T10:39:00.000-07:00

Really, the truth is that the world lost a friend...a man who cared about the human condition and worked tirelessly to help humanity. It seems that everyone I know is blogging, journaling or talking about Mike English who was suddenly and tragically taken from us on Saturday, July 10, 2005.

There is no way to define Mike...I can only talk about him from my experiences and observations. Since I was a teenager Mike has been a presence in my life...sometimes sarcastic, but always caring, kind and giving...I think that is the word I would use to describe Mike...giving. He gave in every way possible to everyone he could. He gave
time, attention, finances, words of encouragement (and the occasional kick in the behind...always justified), and smiles and touch.

I grieve deeply for his lovely wife Jennifer and their 5 beautiful children...Noah, Chandler, Grayson, Ian and Analese (yes...a little girl after all those boys!!!)

So...a couple of my Mike Moments...

Mike was always took special time for Julia. After a Sunday night service I was praying with Julia...just standing there, not really praying for her as much as holding her as I prayed...if that makes any sense! As I stood there I could feel someone put their hand on Julia, but I didn't look up...Julia is blessed to have people pray for her often. When this hand didn't leave for some time however, I became curious and glanced up...it was Mike, both his hands on her back, his face lifted heavenward and tears running down his face and into his collar. I have no idea what he was asking for...but I have no doubt but that part of her great progress can be linked to the prayers of our friend Mike.

And just a week or two ago Julia was making tons of noise in church. I wearily got up (for the dozenth time) to wheel her little chair out into the foyer till she calmed when Mike met me at the door. He patted Julia on the head and said "You sing, baby...you sing all you want." And to me: "Let her talk...she's ok." Now, both he and I knew that Julia couldn't disrupt the service, but he was acknowledging Julia and her voice, which is not always appropriate but always deserves to be heard...and her way of communicating what she needs/wants. I felt that he was gently reminding me to consider once again what Julia is trying to "say" to me. As I have mentioned in previous posts, communication is probably the largest single concern of families who have a member with CDC.

So...we grieve the loss of a great man today...one who put his God and his family first, and always held out a helping hand to others. I only hope that we can continue his legacy and that his spirit will live on in us...the willingness to reach out to others and touch their lives, whether lovely or unlovely, and to give sacrificially to the work of God and the needs of humanity. I personally am stepping up to the plate...I know no other way to truly honor Mike.

Sensory Diet...what is it?...does it work?

2005-06-09T11:22:00.000-07:00

www.celebratingjulia.com

"The last few months have been very educational for me. Teresa has taught me so much about sensory integration dysfunction, and developed a sensory diet that has worked wonders for Julia.

Julia's sensory issues have gotten progressively worse as time has gone on. She regularly bangs her head on the floor, the wall, the highchair, or against people. She also pulls her hair, rubs her head on the floor or furniture and bites both herself and others. Her eye contact has always been lacking, and her avoidance of eye contact has escalated recently. Hand flapping and sucking continue to be an issue. As always,Julia is extremely oral and seeks out a great deal of oral input...I came into the living room recently and found her face down on the carpet trying to bite it...nothing is sacred...if she can get her mouth on it she will!

Julia began to demonstrate some defensive posturing a few months ago. This includes 'hiding'...like an ostrich...she will bury her head in our laps, under our arms or in a blanket or pillow and stay there as long as she feels overwhelmed. She also assumes a fetal position and becomes very rigid. She does this whenever there is too much stimulation...usually visual or auditory, but occasionally she will 'posture' if she is being touched a lot.

So...what to do? As you can imagine all of these developments were very distressing. Teresa immediately performed a formal sensory assessment to determine Julia's most critical areas of need. Then she outlined a sensory diet, taught us how to implement it, and put us to work. The results are no less than amazing.

Teresa asked us to provide Julia with significant vestibular and/or proprioceptive input and have her wear her pressure vest for 20 minutes every other hour. On the odd hours we do the Wilbarger skin brushing program and joint compressions.

In addition to these hourly activities we continue with massage, although we now only do this in the evenings after her bath. We also build obstacle courses for her to crawl over/through/under/around at least once a day to help with proprioceptive input, and once a day she visits "Dad's Gym" where David spends 15 minutes or so spinning her, "flying" her through the air and doing lots of other vestibular activities, many of which are just made up as he goes along.

We also found that Julia loves "sandwiching", a technique that Teresa first demonstrated for us in the clinic. Teresa will cover Julia with a beanbag and press her firmly into a cushion. The input is extremely organizing and Julia responds very positively to this activity. We do this at home when she begins to "posture".

Teresa gave me two amazing books to read. One is called "The Out of Sync Child" and the other "Smart Moves". These books offer a comprehensive overview of sensory integration dysfunction but are written to the layperson and are very "readable". This only whetted my appetite and I began to devour everything I could find on the subject. One book I checked out of the library is called "The Boy Who Loved Windows". I recommend these books to anyone interested in SID.

Teresa also began seeing Julia in the Easter Seals clinic one hour a week to work on her sensory issues, using the equipment there. This has had awesome results including a reduction of many of the autistic-type behaviors. The more frequent eye contact alone is worth the work we do to maintain Julia's sensory diet and I am thankful to each of her therapists for contributing their ideas and observations.

Once we began to regularly provide Julia with lots of positive sensory input we saw amazing improvement in all areas. Her gross motor improved, her fine motor ( which has always been her most challenging area of development) seemed to blossom overnight, and we saw her communication, both receptive and expressive take an impressive leap.

The Cri du Chat Syndrome Support Group

2005-06-02T22:20:00.000-07:00

The Cri du Chat Syndrome Support Group:

"What is Cri du Chat Syndrome ?

Cri du Chat Syndrome ('Cry of the cat' in French) is a genetic disorder caused by the loss or misplacement of genetic material from the fifth chromosome. It was first identified in 1963 by Professor Lejeune, who also identified the genetic cause of Downs Syndrome. He described the syndrome after the sound that many of the babies and young children make when crying.
This cry, along with some of the other notable features, is so characteristic of the syndrome that a doctor can usually identify the condition before a chromosome analysis has taken place.
As well as the physical features, Cri du Chat causes a varied level of mental handicap. There are a few children who attend mainstream education, but the majority of the children need more specialised education. The long term outlook for children with Cri du Chat is quite good. "

2005-03-23T11:05:00.000-08:00

Julia and her walker.

2005-03-23T11:01:00.000-08:00

Julia and her walker that Easter Seals provided.

Easter Seals is THE BOMB!!!!

2005-03-23T09:59:00.000-08:00

Before Julia was born I had no understanding of the world of disabilities or handicapped individuals. I had heard of Easter Seals, and knew that they were a respected organization that assisted the disabled, but I didn't understand how awesome they were! After Julia's diagnoses we were quickly catapulted into this new world.

NOW...we first give GLORY and HONOR to JESUS for ALL of Julia's excellent progress...however, we also know that He has given men the ability to learn and apply their knowledge for the betterment of others. This is what has happened for us at ES. Julia has the most incredible team of therapists who have helped her make remarkable progress. There are not enough words to say THANK YOU to Michelle, Teresa, Erin, Nancy, Suzanne, and Monica for all that they have done to help Julia and to educate us in ways to help her ourselves!

Julia is the 0-3 years ES Ambassador (like a poster child) for this year and we are having a blast waving the ES flag and letting everyone know how great this program is! Easter Seals is funded, in part, by philanthropic contributions and there are several people who have become supporters of ES after having seen Julia's awesome progress. This is an unabashed plug for this great program! If you do any philanthropic giving ES should be on the list! When you give to ES almost .90 cents of every dollar is used to provide direct services for the disabled...not many programs can say that!

http://superiorca.easterseals.com/site/PageServer?pagename=CASU_giving

2005-02-19T17:07:00.000-08:00

Look at this big girl!

2005-02-19T17:06:00.000-08:00

Julia is Cruising!!!

Yay...Super Progress!!!

2005-02-19T11:46:00.000-08:00

Julia has a website, and something that I don't want to do is try to re-create it here...I guess I see this blog as a sort of online diary I can use to record the little daily details of our lives and Julia's progress.

Along that line, we are very excited about several new developments. Julia is cruising furniture with ease now, and is beginning to transfer herself between furniture or people. This is a happy/sad thing for us...thrilling because we are seeing this skill (pre-walking) emerge after months of concerted effort, and sad because every gross motor milestone that she meets lessens our chances of Julia receiving PT when she transitions out of the Early Intervention program in December. If Julia is able to navigate through her environment when she goes to Pre-school in 10 months then it will be difficult to obtain PT services for her. The downside of this is that even though the rudiments of walking may be in place, much more work will need to be done before this skill is fluid and automatic. I have ambivalent feelings about this. I keep reminding myself that I need not borrow tomorrow's trouble today! And we really are thrilled about every bit of progress that we see.

Julia saw her geneticist for a follow-up this past Monday, and he was truthfully amazed at her progress. We know that it is because of a gracious and loving God that Julia is doing so well. I told him this. I also made the suggestion that her successes ares due to the early intervention programs. While he agreed with me, he also feels that our family dynamics have the biggest influence on Julia's progress. He told us that Julia's progress is due to how we relate to her, and to our following up on the therapist's "homework" suggestions. It is gratifying to be validated by one of Julia's professionals, but we also know our weaknesses and limitations. Jesus Christ is the reason for Julia's progress!!! Because of Him we have HOPE and He gives us the strength to be consistent. What an honor to be trusted with this great treasure!

Julia now has 18 signs that she uses consistently to communicate her needs and wants to us. This is so exciting!

Here is a list:

Eat
Drink
More
All done
Dog
Fish
Cracker
Bath
Sleepy/Tired/Bed
Thank you
Please
Julia
Baby
Nods for yes
Shakes head for no
Waves for hi/bye
Hat
Praise Jesus/So Big (same sign...her use depends on context)

She also identifies several body parts such as:

Head
Hair
Nose
Mouth
Ears
Hands
Feet

In addition to all of this great communication Julia also will initiate reciprocal games like Peek-a-Boo and Row-Row-Row-Your-Boat. The fact that she participates at all is great, but when she initiates playing with us we are always thrilled. She is also clapping and stomping when we sing "If You're Happy and You Know It" and will imitate the spider in "Eensy Weensy Spider."

Well...our 26 month old who would "never walk or talk" is doing great! Thank you, Jesus!

2005-01-27T12:43:00.000-08:00

Here is our Julia when she was 16 months old.

So...what is Cri du Chat anyway?

2005-01-26T20:16:00.000-08:00

In this blog we want to celebrate our precious Julia...our littlest angel who was born with Cri Du Chat Syndrome on December 10, 2002. My name is Beth and I am the mommy of this great treasure and her 4 sisters and 2 brothers. I hope that by chronicling Julia's Journey here we can provide a positive picture of children with diasbilities in general, and those with Cri du Chat in particular.

Cri du Chat is the result of a terminal deletion on the short arm of chromosome 5. This syndrome is characterized by significant cognitive deficit, moderate to severe developmental delay, identifying physical characteristics and a myriad of health issues.

Julia is our 7th child and was diagnosed with CDC at 3 weeks of age. You can imagine how we felt when an internet search revealed that children with CDC live an average of 4 years, never learn to walk or develop speech, and are plagued by many behavioral difficulties. Although new studies are emerging that refute much of the earlier research, the negative information that we found is still the first info that most new parents unearth in their search for answers about CDC.

We have found in the 2 years since Julia's diagnoses that although there are many developmental challenges, there is also much beauty and many successes in the lives of those who have CDC. As one grandmother said of her granddaughter who has CDC..."Although we long for her to have a normal life, we wouldn't trade her for any "normal" child in the world."

We are very interested in meeting other people who may be facing the same sorts of challenges that we are. For more information about CDC please visit Julia's website at www.celebratingjulia.com