Thursday, April 19, 2012

Esther's Examples ~ Bathroom Etiquette

Esther is going to show us what are the important things to remember in the bathroom.

Esther goes to the restroom.  She keeps her panties on her body, and does not drop them on the floor.

Esther always wipes her secret parts.  And never forgets it is front to back.  And then puts the toilet paper in the toilet and flushes.

Esther does NOT leave the bathroom with her panties down.

After she puts all her clothes back on properly, Esther ALWAYS remember to wash and dry her hands.

Esther hopes that you remember all the important rules, too!!

Esther's Examples ~ Meet the Stars!

I promised a meet and greet of our new stars...and so here are the willing victims of my ever rushing ideas!

Esther.  Our very biggest Star.

Nicole.  Her adoring and yet realistic mama.

Rae.  Her Special friend and co-conspirator.

Anna.  Her Typical friend.

Nathan.  Her however-we-need-to-use-him friend.

Dr. Missus Lady Person.  Jack of all trades.  Mistress of Everything.  She'll be the adult we need in whatever situation.  I asked her, she's willing.


And all that jazz.

Friday, April 13, 2012

Esther's Examples ~ The Birth of an Idea

I've been sewing like a mad woman over the last few weeks...Spring Break slowed me down considerably...but it was worth it!

About 4 weeks ago my brain hit on an idea that has taken on a life of it's own.  I've had such an explosion of ideas in connection with the original, I'm barely sleeping...

Esther is the little girlie in the middle in the pretty fairy hair.  She was my first doll that I've made since I was about 14 or 15.  She is the star of my new project here on the blog.

Elise has hit another sticky patch.  She is having a lot of behavior problems again, due in the most part to Sensory Issues and Communication Issues.  I am trying desperately give her a voice and base that can help her.

There is an idea out there in the special needs community that pictures can stand in for words, in preparing a child for experiences, helping them find "words" that others can understand, in allowing them to express themselves without having to "explain" takes many formal forms, usually in a very simplistic form: stick figures, quick drawings, generic black and white prints. 

Elise likes pretty things.  (Don't we all?)  She already utilizes dolls as "Activity Support" in that she uses them as a few extra votes for things that she wants to do against her siblings and me.  And it occurred to me that I could use them as "votes" in the activities I wanted to see her attempt, do, and avoid.

I was going to do it for Elise and myself.  I was going to get a "Little Elise" doll that I was going to utilize for us, privately.  Then I realized with a shock, that it may not be just my child.  And thought maybe, I'd try for a book...and then thought that if I needed it yesterday, then maybe others might, too.  And I decided to make an attempt at a good, old-fashioned serial.  I am going to aim for once a week...but definitely every 2 weeks.  And I am going to make picture stories of some behaviors that we need to make a point with Elise....and these lovely dollies are going to be my helpers.

My "Special" dollies have the rainbow fairy hair.  My "Typical" dollies have standard hair colors.  There is a Mommy and the other adult is going to play the part of teacher, doctor, therapist, and random needed adult.  There may be new friends added as needed.  But this is where we start.

Since I hope to one day put together a book of my serials, I needed the stars to be original.  They are my own patterns, made exclusively by me, on brown paper bags.  Their clothes will be as well.  I am still working out the brass tacks of their "set" of their adventures and activities.  But I am sure that I will have to wrestle those needs out myself, too, to achieve the goal of being copyright independent.  (Keep in mind, My Lovelies, this brainstorm is protected by intellectual copyright laws!)
This project has been named "Esther's Examples".  Esther will be exhibiting our goals with her friends. 

Esther was not randomly named.  I wanted to have an "E" name, because Elise is hyper aware when names start with the same letter as her own.  I needed her to identify with the star.  I wanted the doll to have a unique name she was unlikely to run into at school.  And Esther is my very favorite Bible story.  Despite the fact that God is unnamed in the entire book of the Bible, you can see his influence in the entire story. 

Also, in this project I am hoping to mediate many of my fears and worries for my child.  It smacks of  one of my favorite quotes from The Patriot, "Stay the course."  Which is what I feel like I am doing most of the time.  One foot, in front of the other...doing the best I can, inch by inch.  Mediating.  Mediating.  Mediating.  And beautifully enough, the symbol of the the quote in the movie, was a star necklace.  Star.  Which is what Esther means.  Could it be anymore meant to be??

I believe that my next post will be show-casing each doll.  And then, "Washing Hands" will be my first serial.  A sink is giving me fits, but I think I've finally got it worked out in my to make it!

And so...Stay Tuned.  And pray for this project?  Please?  I think it could be really good.

Friday, April 6, 2012

Meriah's guest post for Cancer

This is my guest post over at With a Little Moxie.  I was very proud to be a part of her fund-raiser for Cancer research.  It is also a fantastic blog, that I highly recommend, HERE is my favorite post!!  She is still fund-raising, so feel free to GIVE HERE a little more and help others survive so that they can LIVE!

"Some days my daughter's bout with cancer seems like a bad dream, something that happened so far in the past, I question if it was real.  Some days, I will get a tightening across my chest and panic will raise it's ugly head when I see her have a lethargic day, and I can barely keep myself sane and separated from that time in our lives.

Elise is 9 years old.  She has been "cancer free" for 7 of those.  This is a fact that colored so much of her babyhood that it's impact is still being seen.  She is an inspiration for those starting the treatment path.  She is a touchstone of miracles for our friends.  She is a painful reminder to our friends that lost babies who were on treatment at the same time.

When Elise was born, we were completely blindsided by the fact that she had Down Syndrome.  I had passed the blood screenings, and I was only 26 years old.  In retrospect, they kept bumping my due date back because she was so tiny and they went "searching" for her tiny little finger during my second (of only 2!) ultra sound.  All the "little" red flags were completely blown off...and it really should have been looked at closer...but I think it was better that we didn't know.  My husband was in graduate school, I was teaching 7th grade, and we had a gorgeous 4 year old have known would have been such a huge stress and worry for us...we got to enjoy my pregnancy and not panic wondering "how we'd do it".

They also missed that her heart had massive holes in it.  She was in cardiac failure in less than 3 months after she was born.  She had her heart repaired at 3 and 1/2 months, because we simply ran out of time.  Post surgery she was put on a diuretic to keep fluid from collecting around her heart.  But after an unfortunate day when she had a couple of runny diapers, she turned got dehydrated and turned blue.  She got a ride the the hospital in an ambulance.  It wasn't just a mommy panic moment.

They did a blood battery just to make sure there wasn't something else going on and the results came back telling us that she had almost no platelets.  They are the clotting agent of the blood, and the most fragile part of your blood.  At 4 months old, she was a little old for "transient leukemia", but they were willing to watch and wait, because she had minimal blasts in her bone marrow sample.

We took Elise in monthly for a blood draw and a bone marrow aspiration every 2.  She had quite a few platelet transfusions.  But the blasts continued to hold steady, and so we continued to watch.  During which time, my husband graduated from school; he got a real, paying job; and we moved from Tennessee to Georgia.  (Children's Healthcare of Atlanta ranked very high among children's hospitals and had a great reputation in cardiology and cancer treatment.  So it factored very high in our decision-making process.)
4 months after we moved to Georgia, Elise got a scan for what we thought was an eye infection.  It wasn't.  Even though she still had minimal blasts, somehow over the last year, the cancer had collected in the form "liquid tumors" in her sinuses and behind her eye.  The doctor told us that practically, the tumor was about 2 weeks away from her optic nerve.  It was primarily in her sinuses, and miraculously, your sinuses can regenerate.  With that kind of information, we were incredibly thankful that we had been watching this for a year.  If we had not been watching it carefully from month to month, our first clue to her liquid tumors would have been her loss of vision, which would have been irreversible. 

And so we started a chemo program that was still in it's experimental stages.  I had had the time over the last year to read up and research on chemo and Down Syndrome.  Which, frankly, was primarily online medical journals.  There was 21 pages in the Medical & Surgical Care for Children with Down Syndrome: A Guide for Parents book.  And a page by Len Leshin, nets a paragraph.  And in the last 7 years, I am not seeing much more information out there.  As a matter of fact, I would say that the best collection of information for any parent faced with a leukemia diagnosis is other parents.

The fact remains, however, is that even though kids with Down Syndrome tend to be more fragile and more susceptible to cancer, the same "fragile" cells tend to respond much better to much less chemo.  The protocol that we chose had 99% survival rate.  The numbers that our doctor gave us at the beginning of her treatment was that AML leukemia in typical kids had a 30% survival rate at 5 years after treatment to 98% survival rate at 5 years if the child had Down Syndrome.  In less than a year and a half, we went from "Oh, no.  Our child has Down Syndrome, what will her future be like?"  to "YES!!!  Our child has Down Syndrome, she HAS a future!!"

Elise's treatment lasted from February 2004 to September of 2004.  It was all in-patient.  She would receive treatment for a few days, stay for a week while we waited for her blood counts (platelets, neutrophils, and whites) to come back, and then we would go home, in lock-down.  And we would repeat.  The final month of treatment, her counts were so suppressed, that she had to stay at the hospital for a full month.  During this time, we farmed our beloved son out to our parents.  He enjoyed going to "grandparent camp" but we missed him terribly.  He would come home when Elise was stable enough, but that often resulted in the weekend before the next round of chemo.  We talked to him every night, and staying with our parents gave him a measure of normalcy that we could never have given him during that time.  I often reflect that I do not know what we would have done if our parents had not so graciously stepped up and gave him the gift of "normal".  I know it would have been desperately hard on all of us.

My biggest worry for Elise is relapse.  You are never free.  The reason that figures big in my nightmares is that for all that kids with Down Syndrome respond well to lighter chemo, they have a hard time with relapse.  As in, the numbers of relapse survivors bottom out...they were in the single percentage points the one time I was able to find them.  The numbers are similar if they have to go to a Bone Marrow Transplant.  Their bodies really struggle with the chemo required to get them to zero for the transplant prep.  This is where research will be our biggest weaponry.  Our kids are very susceptible to cancers, and in cases like Elise where the cancer sneaks in the back door, the probability of "Round One" working without fail is slim...we need to have access to the "Big Guns", too.

Post Remission, there are several dates that figure in pretty high for relapse.  One year, two years, five years, and puberty.  I am thrilled to mark those dates off.  Elise has celebrated One, Two, and Five years out.  We are on the cusp of puberty, and I hope to celebrate that too. 

Every year, I celebrate her remission date.  September 10.  We have her favorite food and I get her a small present.  We watch her favorite movie and we snuggle her with abandon.  Some years we even have cake, the "mark" years.  She doesn't have any idea why, her siblings have no idea why, but I cannot let the day pass without a party.  It is the day that we were given her back...and the beginning of "mostly normal" in our lives.  She finally had the strength to attempt walking; the energy to start talking, signing, and communicating; the vitality to touch more than just her family with the Muchness that is HER.

If your child presents with any symptoms: petichae, lethargy, bruising, constant illness; do not hesitate to ask for a Complete Blood Count (or a CBC), it will take almost no time and the peace of mind is priceless.  If the unthinkable happens, contact your local Down Syndrome Association or online/Facebook support groups and look for parent of kids who are survivors.  If your child DID survive, make sure that that fact is out there!!  The importance of support and information cannot be understated.  And in our position, it may be the only useful information out there.

"The Club" of families who celebrate their children with Down Syndrome is large and loving.  "The Club" of Survivors with Down Syndrome is smaller, but even more important.  Don't hesitate to reach out!  And ask and hug and educate!!"