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

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

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...

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...

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?

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

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. "

Julia and her walker. 

Julia and her walker that Easter Seals provided. 

Easter Seals is THE BOMB!!!!

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

Look at this big girl! 

Julia is Cruising!!! 

Yay...Super Progress!!!

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!

Here is our Julia when she was 16 months old. 

So...what is Cri du Chat anyway?

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