there you go- edit edit edit

Once again, I typed while tired 'TWT'... and left a few things out :-)  I didn't send some poor person a random pic from pinterest... I sent them the message at the bottom of  this post.  The picture was all for me! 

So I'll try not to be so brief tonight- i think my last post led a few people to believe we had RANDOM ticks in our home!! Jumping from the ceiling into Bodies hair <<----- not the case :-)  Bo and his cousin Mark had been playing down by the creek, digging in who knows what, playing with all of God's wondrous creations... and came home with ticks!!! i really, really, really don't like them.  at all.  not even a little bit.  I now know that tweezers will do the trick, YUCK, and that I'm not afraid to set things on fire in the house... just ticks, but you get what I'm saying. no ticks.  I'll burn 'em up.  quick like.   

This weekend we had some of my aunts on my mom's side in for a visit- We attempted a 'girls picture'

Aurelia was kicking and squealing and laughing, which made all of us laugh... ok, I may be grimacing, but ya know, it's a bit tricky to hold on to 30 pounds of wiggling Bell!!

 Abe LOVES it when we  take pictures of ourselves- we reverse that camera and start snapping! 

we take a LOT of pictures...

a Lot a LOT of pictures :-)

I love that he loves it!  

 Bodie  is getting really good with his Nerf guns!  He's also getting REALLY TALL!!! ok, not *really* tall... but he's growing quickly.  My amazing middle man! 

We had a lot of fun with cousin Christopher-  he was amazingly patient, chasing a football/boomerang/airplane at least 756,389,402 times!

LOOK at that face!!! such a clown! 

My cousin Jen and her sweet son Parker surprised us on Saturday and came to join the party!  I miss this girl so much... she's a strong momma. 

This is pretty much how we all felt by this afternoon- so full of fun we couldn't keep our eyes open!! 

The arts and craps project is DONE!! The slot is at the top ...it's a card box...  :-)  I had painted the boxes and tacked the ribbon and flowers on at the beginning of April but had never finished it!  Since the Wedding is next Saturday I thought I had better get it done!! you know you own a penguin ball! 

If you've been around me for more that 45 seconds you probably know that I have children.  Being Generous, if you've known me for more than 24 hours, you probably know that some of my children have special needs.  You may have heard, seen, or read a post or comment about the words you choose... and how the off the cuff use of the word 'Retard' as derogatory slang is  pretty much enough to make my heart stop... for just a second. I think to myself 'how is this ok? who, really, thinks that this word is just fine to use??' It came up again tonight on social media... in a person's post, someone who often comments on my posts from the Spread the Word to End the Word campaign.  so, I calmly sent them a message... worded politely.  

hey! hope you're having a good night- I don't know if you've seen any of my posts- I work with an organization that has a 'spread the word to end the word' campaign. We try to educate and inform people to choose a word other than 'retard' or 'retarded' when they are mocking someone/something... Basically, when you use the word 'retarded' you are making fun of someone, who through no choice or fault of their own, has different abilities- like Abe. People say ' i didn't mean it like that'... when you use that word, your telling your children, your friends, your community, that it's a fine word to use, and that the perpetuation of that stereotype and disrespect is acceptable. Abe can't speak, so I'm speaking up for him. Have a great night.

Then I found the below sign on Pinterest

 a good reminder for me.   I encourage people to speak up ALL the time but find it so hard to do myself.  No more.  

Happy Memorial Day!  Thankful for all who have served. 

TICK

I have field-tripped up a STORM here lately!  At one point I could no longer remember if it was Abe's or Aur's movie- Bo's zoo day or Abe's park- Second Grade Sea Creatures or Kindergarten Celebration.... oy.  

we left the movie after about 20 minutes... not our thing.  Went to see Daddy- so happy :-)

made some crafts... and c.d'.s for the teachers that we love!! We had over 20 gift packets ready to go!! 

middle man's ice-cream!  we had a great time at the children't museum and the zoo! 

highlights!!!

and speaking of hair- we pulled 4 ticks out of Bodie's head... YUCK!!!! they must be prevalent this summer!! 

close

my son, my Abe.... he loves mud.  he makes his own- handy and independent of him, no?  I'm taking the stance that this is building up his immune system. don't tell me if I'm wrong :-)

arts and craps again!  penguin is all ready to go for school ... Abe likes to take his head off, will most certainly let him at 3:10 pm tomorrow.  

remember how Bo wouldn't smile or look at the camera??? not so much any more!  I love, love, my days home with my babies.... I might be ready for a walk  ( to California) by 6 pm, but I will treasure these memories and dog pile snuggles with them.  

cheese!!! We're awake far too early here... but The Husband is busy, busy with end of school year, end of spring season, so we all wake up and hang out to-ge-ther.  

sometimes you just need a snuggle right. now.  My Bell is not too shy to tell me when and exactly how she would like to be nuzzled- see her little hands?  here momma, she says with her sweet hands, kiss my cheek and hold me tight.  love. love. love. 

friends- we are good.  we are taking this medication business in stride.  we are looking toward the future.  we are praying.  we are staying calm and close to one another.  

doesn't mean I don't freak out every now and then... simply means I trust the future to God's hands. 

xo 

in the hallway... keeping busy

too tired for much tonight- 

http://www.change.org/petitions/sponsor-arbaclofen-stx-209-study-for-children-with-autism-and-fragile-x

Because this is how we ride the merry go round.  

together.

over 1000 signatures in less than 24 hours- whether this is the drug for Abe or not... it is a miracle pill for many.  Please read my friend Holly's post below.

3 1/2 years... When a drug trial ends...

3 1/2 years ago really wasn't all that long ago, yet it feels like a life time.

3 1/2 years ago, Parker (who has Fragile X Syndrome) was 10 1/2. 

3 1/2 years ago Parker could barely talk.

3 1/2 years ago Parker left massive bruises on my body daily.

3 1/2 years ago Parker could rarely make it through a day of school without a complete meltdown.

3 1/2 years ago Parker couldn't go to the movi
es.
3 1/2 years ago Parker couldn't go to the pool.

3 1/2 years ago Parker couldn't tell me about his day, his wants, his needs.

3 1/2 years ago Parker couldn't tell me he loved me.

3 1/2 years ago, I took a chance. I enrolled Parker in a drug trial by Seaside Therapeutics. A drug called STX209, later to be named "Arbaclofen"

While it may seem easy to make the decision to put Parker into a drug trial he clearly qualified for, it wasn't. It's scary as hell to make that decision. With this one, the decision was made a little easier because this drug was a tweaked drug of Baclofen, something that had been on the market for years. I knew the long term side effects. I knew, long and short term, it would not hurt him. So, we did it.

Every 2 weeks for 16 weeks we drove to and from Chicago, 4 hours each way, 8 hours round trip. Usually for a 15 minute check up. Sometimes for longer for cognitive testing, paperwork (that damn Vineland takes forever), blood draws, etc.

The first visit it took almost a full hour to get Parker from the van in the parking deck into the Fragile X clinic. I was not not only exhausted but covered in bruises when we finally made it in the door. While many people walked by as we sat on the hall floor together either in tears or pep talking or me trying to remove my arm from his mouth... this was normal to us. Nothing about this frustrated me or was out of the norm. This was just our life, this was the life we knew but were hoping to change.

The drug trial proved to be life changing. It was a double blind trial, nothing changed during the placebo time... everything changed when he went on the real thing. For the first time ever, my son said, unprompted, not mimicking but on his own "I love you mom" (you can read about it here). I held him so tight and cried. 10 1/2 years and worth the wait to hear it repeated over and over since that night.

The drug had received approval to go into an extension - because so many patients had the outcome of such incredible improvement. The extension was to last until we had FDA approval and the drug was available to everyone with the hopes of FDA approval in 2013 or 2014.

During this time, I traveled to Massachusetts and met the incredible and dedicated staff at Seaside Therapeutics. I worked with the press to show the incredible changes this drug made in Parker, tv, newspaper, magazines... all of it. If a phone call, letter or email was needed to the FDA or government, I was on speed dial. I made it happen. Parker was improving every day, even today... he still continues to improve. I often gave the example that Fragile X had left Parker living life in a box with the lid tightly sealed on. This drug took off that lid. It let him out of the box and no matter it took, no matter what I had to do, no matter who I had to call, email, travel to see - even if it meant stealing - I would never make him live life without this drug again. I would never let anyone put that lid back on the box with him inside. I made this promise to Parker.

I was asked during an interview, "Does Parker know that these pills help him?" Every morning and every night, the boy who used to fight taking his medicine asked for his pills. Did he know? Clearly. He knew.

In the past 3 1/2 years, I have watched my son blossom into an incredible young man who is now 14. A young man who still faces the struggles of Fragile X but to a much lesser degree. A young man who rarely ever physically attacks me and when he does, in moments of sheer despair, it is nothing compared to the aggression of his past. A young man who is incredibly active in school, significantly increasing his workload. A young man who can go to the movies, to the pool, to the store, out to dinner. A young man who has become part of our community in many of the same way his friends are. A young man who can tell me when he's hurt, sick, scared, happy, excited, what he wants to eat, what he wants to do, when he is cold, when he is hot, who is friends are... a young man who can tell me he loves me.

I knew that Seaside was having trouble financially. We had seen staff go. We had been told there was financial difficulties. We were told if the study needed to end we would get 4-6 months notice. We never stopped believing we could make something work. Seaside never stopped believing they could make something work.

For 3 days this week, Parker is at Outward Ingersoll with his 8th grade class. He has been doing everything from canoeing, to learning how to tie knots, to first aid, to tracking to climbing walls and walking rope bridges. Today was day 2. For the 2nd day in a row, the young man who hasn't been able to wear jeans since kindergarten has worn jeans to school (long pants were required for this trip). He has successfully with the help of his friends, been a part of every activity and successful. This is something he could not have done 3 1/2 years ago.

Today, as I am getting FB messages and texts with parents who are there witnessing his accomplishments, updates filled with pride, I never saw the email coming that said, "They are ending the STX209 trial immediately."

That's it. It's over. Seaside will be analyzing the date from the placebo-controlled trials and will continue to work for FDA approval if these trial show benefit that is sufficient for approval. So, yes a tiny slimmer of a glimmer of hope but nothing that will happen right now. Nothing that will stop the medicine from ending in the next couple of weeks and in all honesty, from what I've learned of FDA drug trials/approval... I'm not holding my breath.


I am thankful to Seaside, the doctors at RUSH, the study coordinators -they have given me a real look inside my son for 3 1/2 years and I love what I see.

My heart is so broken, hope has been replaced with fear and pain. There is NO WAY I can explain to him why the pills will be gone. There is no way for me to stop what is about to happen. There is no way for me to prepare him, myself, his sister, his friends, our family for what could happen next.

I have to do what I swore I would never do again... put him back in the fragile x box and close the lid. I am so angry that I have dedicated so much time and heart into this... I have convinced other people to start the trial. I talked my best friend into putting her son on it. And now, not only do I have to see the pain of my family, the confusion of my son, the lid go back on his box... but I have to watch my friends go through it too. I have to watch an entire community of people I love and would do anything to make their lives better for hurt. All I can do is watch. I can't fix it. I can't take away the pain. I can't do a damn thing. Nothing.

I am so scared of what the future now holds for Parker. I am pissed off that I know I will have to watch him regress. I will have to watch him live with the confusion of why I am not fixing this.

Parker starts high school next year. A new school. A new teaching team. And no drugs.

There are other clinical trials and I will look into them. That means driving back to Chicago every 2 weeks, 8 hours round trip, $100 in gas each time and a day off work. Not exactly in the budget of a single mom but something I will figure out if the right trial is available. A new trial with an outcome I cannot guarantee to be better. A trail of a newly formulated drug that I will have to go into not knowing how it will affect my son long term.

Tomorrow, tomorrow I will pull myself together and start discussing options. Tomorrow I will focus on hope again for the families impacted by this and a way to help them cope with the - what I can only foresee as devastation - that awaits us as we are titrated off the current drug and left with nothing. We have amazing teams at the Fragile X clinics who will work with us, help us find the next step in the path for our children. They are dedicated and want the very best. I believe in them to help guide me.

But today, today I cry and I can't stop. I have tried. I need to cry. I hurt more than I can put into words. I need to cry. The fear of the pain of watching the regression that could take place is just overwhelming. The fear of losing the young man I've enjoyed so much for the past 3 1/2 years.

For the next few weeks, I will do my best to fight back my tears while Parker is awake. To treasure every single second with him where he can talk to me. To tell as many jokes with him as he can tolerate because he loves jokes more than anything. To talk about the Bulls, the Cubs and whatever sport team he wants until we've covered everything about them. Record every word in my memory and pray to God he doesn't lose his ability to communicate.

My hope right now is that he has matured enough in 3 1/2 years and made progress that was credited to the drug but was really him. Time will tell.

All I can do now is wait... and pray that with this change I don't lose the young man who was let out of that box. He shouldn't ever have to have the lid put back on.

I promised him. I promised him I would never let that happen. I promised him.

I failed. I am so sorry. So very sorry.


To learn more about Fragile X Syndrome visit the National Fragile X Foundation at http://www.fragilex.org/

boy o boy o boy.... my boy. STX209

left field- it came out of left field.   An email informing us that the STX209 drug trial that Abraham has been participating in for the last year is ending... now.  right now.  secondary to funding.  

From what I can gather- there were 2 arms of this study, 1 for Fragile X, 1 for Autism.  The Autism study had loads and loads of participants, loads of backers... and poor results.  Because there was no proof that the arbaclofen made any sort of clinical difference in the lives of these children, the backers pulled their funding.  The compilation of data for the FX arm is not yet completed... preliminary information tells a completely different story- progress, speech, cognition, positive changes in every day life.  

Fragile X, Fragile X, Fragile X.... you still haven't heard of it?  Apparently neither has anyone else.  Fragile X is genetic.  It's molecular in nature.  It's caused by an expansion or repeat of our DNA sequence...  and this drug seemed to abate some of the symptoms- social anxiety, fearfulness, panic.... 

This is a copy of my post from April 11th, 2013

Tonight's spring concert was AMAZING!!! My handsome Bo and his Kindergarten class sang about being green, while Abe and his Second grade class sang about the Ocean and Played Xylophones 

 Last year, there is NO WAY in the world that my big kid would have been able to 1. leave FOR school after 630 pm 2. Get out of the car at SCHOOL when it's almost dark outside 3. Be fired up and excited to be in the classroom with his peers in the NIGHT TIME 4. WAIT in the hallway 5. Stand on the risers with his peers and use his 'go talk' device to participate in the concert 6. Play a XYLOPHONE with his amazing aide and peers in front of a packed gym  7. Wait patiently while the kids in the other 2nd grade took their turn on the xylophones 8. Make it home HAPPY and through the entire process without a MELT DOWN!!! I know i've said it about 5 billion times in the last week... you know why we work so hard with ALL of our children? Why we try EVERYTHING no matter how many times we may have failed at it before???? Why we continue to believe that every single cent we can contribute to research and education makes a difference??? This. this is why. xo

 

So.   I was sad... we've made huge strides this year- we've changed communication devices (advancing to a device that allows for more spontaneous speech productions), we've participated in many many social events that we weren't able to before- a packed gymnasium for a basketball game, chuck-e-cheese for a birthday party, Grocery shopping on a Saturday morning....  I could go on.  I could stay sad.  I could worry.  

Here's my plan 

el-e-phant

i ran... and lifted. and found a small inch of motivation to not eat the entire sleeve of oreos.  

1. baby girl's leg is better :-) 

2. big kid's medicine is evening out :-) :-) 

3. middle man read me a few stories tonight :-) :-) :-) 

This bracelet from Alex and Ani  was part of my mother's day gift: 

"The elephant walks through life with family close by in a loyal and dedicated manner. Extraordinarily protective, elephants are known to stand up for others encouraging the values of camaraderie, perseverance, and unity. With a trunk up for luck, wear The Elephant Charm to inspire others to pursue their passions and embrace the power of teamwork. " 

and when I say it was a part of my gift, I mean I ordered it, gave it to the husband, and was a  joyful receiver Sunday morning :-)  I also love the pajamas, water bottle, and candle  I picked out! 

Have a happy Wednesday- Trunks Up!

birds

This song

When life leaves you high and dry, I'll be at your door at night
If you need help, If you need help
I'll shut down the city lights, I'll lie, cheat I'll beg and bribe 
To make you well, To make you well
When enemies are at your door, I'll carry you away from war
If you need help, If you need help
Your hope dangling by a string, I'll share in your suffering
To make you well, To make you well
Give me reason to believe, That you would do the same for me
And I will do it for you, For you
Baby I'm not movin' on, I'll love you long after you're gone
For you, for you
You will never sleep alone, I'll love you long after you're gone
And long after you're gone, gone gone
When you fall like a statue, I'm gonna be there to catch you
Put you on your feet, Put you on your feet
And if your well is empty, Not a thing will prevent me
Tell me what you need, What do you need?
I surrender honestly, You've always done the same for me
And I will do it for you, for you
Baby I'm not movin on, I'll love you long after you're gone
For you, for you
You'll never sleep alone, I'll love you long after you're gone
And long after you're gone, gone gone
You're my backbone, You're my cornerstone
You're my crutch when my legs stop moving
You're my headstart, You're my rugged heart
You're the pulse that I've always needed
Like a drum baby don't stop beating
Like a drum baby don't stop beating
Like a drum baby don't stop beating
Like a drum my heart never stops beating
For you, for you
Baby I'm not movin on, I'll love you long after you're gone
For you, for you
You will never sleep alone, I'll love you long after you're gone
For you, for you
Baby I'm not movin on, I'll love you long after you're gone
For you, for you
You will never sleep alone, I'll love you long, long after you're gone
Like a drum baby don't stop beating
Like a drum baby don't stop beating
Like a drum baby don't stop beating
Like a drum my heart never stops beating
For you
And long after you're gone, gone gone
I'll love you long after you're gone, gone gone

And if that's not a Mother's Day song, i don't know what is.  And he chews gum while he sings.... amazing. 

thank you, Bob.  

desert: sand :: the last 4 days: ridiculous

Hello there, kind friends- watcha been doing??? We've been busy!!  <----- that's rather repetitive, needless information, however,  it feels even more true than usual tonight. 

I guess I like to keep many, many things in our closets... because when wednesday night rolled around and I had to remove it all- OY!!!! I knew we'd have to have every. single. little. thing. out of the bedrooms... I just didn't realize exactly how MUCH stuff that would be.  

The kids LOVED having all of our beds in the living room- it brought back many, many memories of Christmas in July... no time to explain, suffice it to say that this occurred at Truman, was very fun, and got us in a boatload of trouble.  

This was all fiiiiiinnnnneeee and dandy... Until Baby girl pulled the footboard  (rooms had to be cleared, furniture chaos) of our enourmousfreakingheavy bed over on her sweet legs, and we spent Wednesday night in the ER.  

this is how we look at 4 a.m.... waiting patiently to be discharged home.  Nothing broken, thank goodness!!! still can't run or jump but walks, mostly, without a limp!! Thursday was busy- regional track meet, kids who hadn't slept the night before, etc, etc.... we spent a lot of time  that evening hanging out on the mattresses! 

Friday was work from 5:45 to 9:30 and off to  our Md appointment at Rush in Chicago at 10!! 

big kid and I wore our blue to support some amazing friends with Juvenile Rheumatoid Arthritis.  This little bump that baby girl had made me think of and pray for our friends who deal with severe joint pain and difficulty walking/running/jumping every day.  

We returned home to new carpet, and since the crib had been taken down- it was NOT going back up.  Sweet Bell amazed us, as always, by totally rocking the transition to her big girl bed!!! No tears, no drama, we read our books and she goes to sleep.... amazing.  

Amongst all the cleaning, B came across this card I had saved from our Oregon trip- sweet memories at Canyon Beach!  The Crepe's here were drool inducing.  

Saturday was our 4th annual Mother's day Zoo trip!! This was at the end... the babies were tired ( i say that like it's the reason no one was looking at the camera... hahahaha :-)) We had a wonderful time! 

We came home and the Husband and baby girl crashed- big kid was content to hang out for 20 seconds at a time then would come running to the kitchen to see what was happening with Bo and I!  I take this as a testament to how tired we all were- Bj and Aur slept for 2 hours in a rather LOUD, hectic environment :-) 

We've been using our window markers quite often- this is the message I woke up to Today :-) Middle man is getting better and better at spelling!!  Went to meeting, had lunch, TOOK A NAP * amazing, loved it, want more of it*, then off to Julie's for some Mom's day celebration with the Z side of the family!  

We're transitioning medications... our sweet, happy son is anxious and pinching and grabbing and unable to be calm in his own skin.  i'm sure the chaos in our home helps immensely, said the mom of no child ever.  working on getting it all  back together this week.     pray for us.  

xo 

OooooOooOoOOooooo

Well- there's that.  The house we were looking at was sold less than 4 days after it hit the market.  Not surprised, a bit disappointed. BUT- ( you like 'em, you cannot lie) our ceilings are now painted, our flowers are planted, new carpet in on friday, deck staining on for saturday... yep. Practically a new home here.  

Big kid and I crashed last night- so much so that I didn't even know this photo was on the camera until I uploaded everything tonight!  He's feeling my pulse... or not, who knows, but it makes me smile because he is so, so, so very precious to me.  

Sweet love at the flower shop, making 'BIG BUBBLES!!!! OH WOW!!!!'

a growling tiger!!!! rooooooooaaaaaaarrrrrr!!!  Bodie boo loves to have his face painted!!!  big kid getting bounced all over creation in the back ground :-) 

you don't look like this when you paint???? why not???? geeeesh... and you can't even see the dots on my glasses.  

why aren't i tired at night?  

motivation

paint

we painted our ceiling.   

we didn't argue... do we win something??? I feel like 'home improvements with your spouse' fall into the same category as 'playing spades with your spouse'.... usually you should be on different teams.... simply for safety's sake :-) My father in law painted the edging, My mom came and planted flowers- It takes a village to raise the Zelezniks!!  

We have carpet being delivered on Friday... and a home possibly on the market by Sunday!?!? 

 holy cow. 

I'm cashed out- worked from 6 am to 11am, painted for 3 hours, worked for 3 more hours, ran to B-town, bought some carpet....  which was named weekend escapade....., ran home, ate supper with the P's who had our babies ALL day long, came home, tubbies, night time, painted some more.  

cashed out.  

see you tomorrow, word friends. 

xo

starting again, again.

Hallo- (sounds sort of Australian... which I'm not, but they are all chill, right? they don't worry too much about such a long blogging hiatus.  again. ) 

Working backwards, we've been busy- 

Great Gram turned 96!!!! wowza

sweet, sweet, babies.  tired out and cuddled up.  

can you see the stripes??? I'm a very consistently inconsistent sunscreen applier. 

on the beach- it was AMAZING... and we didn't plan the black and white thing... for real :-)  we're just in sync! but we don't really love in sync or backstreet boys... but we know some people that really, really, really DO!!

my girls.  

my X family- at the walk- from many, many states and 2 countries!!! We raised over $32,000!!!! NO WAY!!! it was amazing.  

talk about amazing?  Friends and family that ordered Papa John's - at work, for lunch, for the entire elementary school's staff, for supper, with us, miles away from us.... the over $1000 we raised for this fundraiser is part of the overall $32K.... speechless! 

good people, everywhere.  The folks at the LPA undertook a massive bracelet fundraiser with us- aren't these fantastic?? We've sold 116 so far... 

and that takes us to today.  More or less.  

a little bit of Brian Andreas- and a thank you to my Angels.... keeping me awake, teaching me about life.

  

xo