The Paauwe Report

This and That

Hi again.  Hope your weather is as beautiful as ours is today.

It has been a busy couple weeks as usual.  We are trying to find our groove with school schedules and therapy schedules and work demands.  I think we are getting there slowly.  It all just takes time.

The weekend before last, we had the opportunity to tour the Lucas Oil Stadium, new home of our Indianapolis Colts. Thanks to a generous co-worker of mine who shared some tickets with us...we enjoyed the time together and the chance to spend the day downtown.  It was very exciting to see the new stadium and to see so many other people excited too.  I've included these pictures so you can see it too.  It really is cool...would love to be able to take Caiden to a game there someday.  He had a good time checking the place out.  Say it with me now...GO COLTS!!!
 

    

 

Avery continues to progress.  We started with private PT today and we are so excited about it!  While we miss First Steps and our therapists, this is a new chapter and we are excited about the possibilities.  Avery's new PT, Ellie, is FANTASTIC with her.  She worked her very hard today, which is what she needs, yet she was so very calming and loving with her.  As Avery's Mom, there is nothing more I could ask for.  Once we begin seeing Ellie twice a week, I have no doubt that big changes are gonna come and Avery is going to make some more great progress in her gross motor skills.   To that end, I have also placed her on the waiting list for Hippotherapy.  We have heard so many great things about this therapy and we are anxious to get started with it too.  Please pray that a slot becomes available soon and that it will work with our schedule to take it.  We have also scheduled an evaluation with an OT that specializes in feeding and oral motor therapy.  We are very excited to be getting to work with her!  Please pray for her to have the wisdom and skills to help our Avery keep progressing in this area too.  And pray that we will be able to afford to have her on our team, as she is a private pay therapist right now.  We are willing to "pay" to have one of the best...not to mention the comfort and convenience of her coming to our home instead of having one more appt. to travel to.  Next on our list is to get Speech therapy lined up and to get a nutritionist to follow Avery and help us move to a blended diet instead of the mass produced formula she is on.  I can't help but believe that she would do so much better on a diet of real foods (blended to be put down the G-tube) than any of the formulas produced for G-tube feedings...especially from a GI and vomiting stand-point.  We certainly know it will be more work...but worth it in the end???...we hope.  We need the help of a nutritionist though to make sure we are getting all the nutrients that she needs into the diet and to make sure she keeps gaining weight and growing.  We also have to get on the schedule for vision therapy with our former First Steps therapist.  Thank goodness...she also does private work and bills insurance.  She has already done such great work with Avery through First Steps and we can't wait to continue that.  Right now, we are STILL waiting on various equipment to arrive...some of it ordered long ago. I will never understand why it truly takes so long to get some of these things!  Our children could be making more progress and gaining more skills in that time, yet they are held in this holding pattern by all the red tape.  Yet to arrive are her pediatric wheelchair (though it looks like an adapted stroller), her Tumbleforms Tri-Stander, her augmentive communications devices, and her new bath seat/support.   Then, we need to start working on the other items we still need to get. 

It is most definitely always ongoing work and follow-through for her needs, as well as ours. Can you believe I spent 3 entire hours on the phone last Friday just making and rescheduling appointments (medical, eye, teeth and therapy) for her and for Jon, Caiden and I.  Mind boggling and exhausting to boot.  Anthem isn't going to like us much in the next few months!  Between eye exams (all of us), dental exams (all of us) and the many medical appts., we keep chugging along and trying to find "fun" time as a family.  It's harder some days than others, but we somehow make it work most of the time.  What more can we ask for really?  God is so very good to us and we are so thankful to have all these resources and skilled doctors to help Avery and the rest of us and for all the friends and family who continue to support us emotionally, spiritually and physically.

Thanks for checking in on us again.  I hope your week is good and that you get the chance to enjoy some great times with your own families.  

God bless!

Holly

The Cool School Days of Summer and Family Update

Hi.  I'm finally sitting down with a little time to write the update I've been promising.  I intend to do a better job from here on out, shooting for at least weekly updates.   That is my intention anyway...life has a way of  happening though and the weeks seem to fly by these days.  It's a reasonable thing to shoot for though.
( A little sibling love)

School is in full swing now for both Avery and Caiden.  I think I mentioned in a previous post that Avery would be starting special education preschool when she turned 3 years old.  She started on July 21st and it is going fairly well now.  A few of this kids have become fast friends with Avery and really interact with her.  That really does my heart so much good.  There were a few problems and hiccups to begin with, but I think we are getting to a good place and in a routine now with school.  And the school has gotten their act together, slowly but surely.  She is attending full day (9 am -3:30 pm) on Monday, Wednesday and Thursday and is receiving an hour each per week of OT, PT and Vision services, as well as 45 mins/week of Speech.  I can't stress enough how much work we put into being prepared and educated about the transition from early intervention (First Steps) to the public school system and Indiana's special education law so that we could best advocate for Avery.  Yet, still, the process was so tiring and stressful.  It is no wonder that so many parents are worked up and scared over this time in their child's life. I feel so incredibly blessed to work in a position where I can help make this period of change and adjustment a little easier and less stressful for some families.  Lord knows these families have enough "natural" day to day stress in their lives.

Caiden's first day back was yesterday.  We went to the school open house on Monday and met his teacher(s)...his classroom teacher, as well as the music, art and Spanish teachers.  It was thrilling to see everyone so excited about the new year and the new school.  His teacher, Miss Millholland, seems really great and she is so estatic about this year and teaching these students.  Caiden was excited about school starting back up and the opportunity to make new friends and be in this new school environment.  I think this school is going to be so good for him...the perfect fit for his personality, learning style and abilities.  We are just so pleased with how things are going already.  He's getting daily Spanish, plus Art and Music twice a week.  The school's musical focus is on string instruments and choral performance.  He gets to learn to play the VIOLIN...in 2nd grade...now that is pretty darn cool!  He's been excited getting off the bus each day and already has made a couple new friends!  If you are interested in seeing more info on his school, you can visit the website here. 

Avery is still making progress, though it is always slower than we'd like.  Nonetheless, we are so grateful for every little bit and still hold great hope and faith that there is much more to come.  We can see our daughter shining through more and more each day.  Being off the phenobarbital has made a big difference in her awareness level...and that is so promising to see.  Though, the down side is that we may be seeing a little more seizure activity as a result.  It still pains me and troubles me that she is continuing to have daily seizures and that some still physically affect her (head jerking, arm and leg stiffening and tremmoring).  She seems to be particularly seizure prone with the slightest illness...even without running any significant temperature.  She and I had colds the week before last, and she was having so many more seizures...I found myself being emotionally transported back to the per-surgery days when she was having so many each day.  I just want so badly for them to be gone...b/c there are always more risks for kiddos having seizures...and that makes me worry about the future more than a care to.  I want to enjoy each day and not worry about the next so much.  What peace that would be!...though, it is entirely unrealistic I know. 

We are scheduled to be back in Baltimore for post-surgery follow-up and neuro check up in mid-October.  I think we have a lot to talk about.  What is next?  Can we get her of more meds?  At what point to do we throw in the towel on getting seizure control?  Can we ever?  Do we need to try another  med?  We have started to see that the Ativan really effects her.  It's effects were previously masked by the phenobarbital...but now that she is off that we see some "new" things with some of the meds.  Not real sure that the Keppra doesn't make her a little moody as well.  Needless, to say...we need to get our thoughts and questions together and have a real in depth discussion when we are out there. 

Home nursing is going so well too right now...actually, has been going well from the beginning.  She has a great team of nurses on her weekly schedule and on her back-up list.  Did I mention that they actually attend school with her too?!  More nurses want to be on her regular weekly case than we even have room for (it's been continuously filled)...so they are settling for being on the back-up list.  It sure is comforting to know that they've all been so impressed by Avery and not turned off in any way by Jon and I that this is their response to meeting her and our family.  This is such a blessing...one I say so many "thanks" to God for each day!   It is such a great comfort...hard to imagine I was once so worried about leaving her in a "strangers" care.  None of them are strangers after a few hours.

We had a great big 3rd birthday bash in July.  All Butterfly -themed as you might have guessed by the invite...complete down to her Butterfly-ed dress and hair clip! It seemed appropriate given all the changes a butterfly goes through b/f coming such and all the ways Avery has changed...not to mention the natural beauty and splendor they posses...again much like our Sweet Avery.  It was so exciting to celebrate that milestone and reflect on all that Avery has endured in those 3 short, yet very long, years!  Thank you to everyone who came to celebrate with us and to all who called-in or mailed-in their birthday wishes for her.  I have to say, she didn't know what to think about all the people singing "Happy Birthday" to her.  She was on auditory alert for that!  I even made the Butterfly cakes and decorated them myself.  Not terrible for an amateur?  Even made Butterfly cupcakes too!

I know that I have said THANK YOU to everyone on Avery's First Step's team, but I can't say it enough!  These ladies gave so much of themselves to our daughter and for that we are forever indebted.  We MISS YOU ALL TERRIBLY already!  We take solace in the fact that you continue to help other kiddos in need and that Avery's place has been taken by another child who'll benefit from your gift's.  May God help them to flourish in their abilities with your help, as well as in their spirit!

SOME OTHER GOINGS ON:

The Hemispherectomy Foundation was recently created by a family (Kristi and Chris Hall) in Texas whose daughter just had a hemispherectomy for Rasmussen's (we actually met them following Avery's last surgery while they were at Hopkins for their initial consult there).  This excites me deeply b/c it has been something that I wanted to create for a long time, but the timing was never right (The DRIVE to do doesn't always equal the TIME to do).  They have put so much great effort and thought into this and I believe that is is going to be a great resource for any family whose child has a diagnosis for which a hemispherectomy is recommended or even considered.  Who better to learn all about such surgery, outcomes, questions, etc. than the many families who've already walked that path...and those who've also just begun the journey?

I have been working hard at getting resources together for inclusion on the HME support network website I created to help other families navigate the world an HME diagnosis brings with it.  This was my answer for trying to help other families when I couldn't quite take the bigger leap to do what the Hall's have now done.  I hope to have many new links, more information and more resources up in the next couple of weeks.  It is great to see interest already and already be adding members to the membership list.  Please, let me know what you think - thoughts, suggestions, errors, concerns - if you take the time to check it out.  Email me at resources@hemimegalencephaly.com.

Jon and I continue to do well too.  We actually welcome the return to school and the semblance of routine it brings.  It has been a really busy and FAST summer.  We just attended my 15 year high school reunion and really enjoyed getting to see and catch up with so many people.  It is amazing the things some have gone on to do.  Next, we are planning to travel to northern Michigan to FINALLY see  Brian, Shaynee and our nieces, Ryan and Reese, and their "new" home.  They've only lived there for 2 years now and we still haven't visited!  I know, we have had a little on our plates the past two years...but it will be nice to finally be able to make the trip.  My nieces are not going to know who I am anymore!  Other than that, we are looking forward to a more low-key (hopefully) Fall season.

Thanks for checking in on us again.  May you all know joy and peace as the Summer draws closer to a close and may God sustain you through any and all struggles in the days to come.

Cheers,
Holly

   

Tropic Thunder...a movie you should miss!

Hi again.  I know I owe you all an Avery update and I will do so very soon.  Right now, I have this pressing issue to share with all of you following Avery and our family's journey...

There is a huge push right now within the disability world to boycott this movie...and I have to agree with the drive behind this movement and with the piece I've copied to share with you below.  Please consider boycotting this movie and send the message that some things are really off-limits.  Each day our differently-abled children are made fun of by others, looked at with pity, and/or viewed as less of a person than their typical peers.  Nothing makes me sadder than that...than to think of the way some may view my SWEET and PERFECT (in my eyes and certainly God's eyes) Avery.   I know there are many looks and comments to come in our future, but I do dare to dream of a day when she is accepted for who she is and as she is without societal discrimination.  How can we ever expect that to happen with movies like this sending the message to adults, and even more horrific, our children's typical peers, that a person with a cognitive disability is acceptable fodder for jokes and a good comedy expense?  Aren't we better than that?  If you think so...please say so with your pocket book...don't reward the movie maker and actors for this dehumanizing work.  

What 'Tropic Thunder' Thinks Is Funny

By Timothy Shriver
Monday, August 11, 2008; A15

I've been told to keep my sense of humor about the film "Tropic Thunder," which opens this week. Despite my requests, I have not been given the chance to see the movie. But I've seen previews, read about it and read excerpts of the script. By all accounts, it is an unchecked assault on the humanity of people with intellectual disabilities -- an affront to dignity, hope and respect.

Consider this exchange:

Ben Stiller's character: "There were times when I was doing Jack when I actually felt retarded. Like really retarded."

Robert Downey Jr.'s character: "Oh yeah. Damn."

Stiller: "In a weird way, I had to sort of just free myself up to believe that it was okay to be stupid or dumb."

Downey: "To be a moron."

Stiller: "Yeah."

At another point, about acting like a person with intellectual disabilities, they say:

Stiller: "It's what we do, right?"

Downey: "Everybody knows you never do a full retard."

Stiller: "What do you mean?"

Downey: "Check it out. Dustin Hoffman, 'Rain Man,' look retarded, act retarded, not retarded. Count toothpicks to your cards. Autistic, sure. Not retarded. You know Tom Hanks, 'Forrest Gump.' Slow, yes. Retarded, maybe. Braces on his legs. But he charmed the pants off Nixon and won a ping-pong competition. That ain't retarded. You went full retard, man. Never go full retard."

I worked with the Farrelly brothers on a film on this topic. I know about edgy comedy. I'm also told that movies are equal-opportunity offenders.

So here's an equal-opportunity response to the equal-opportunity offenders:

People with intellectual disabilities are routinely abused, neglected, insulted, institutionalized and even killed around the world. Their parents are told to give up, that their children are worthless. Schools turn them away. Doctors refuse to treat them. Employers won't hire them. None of this is funny.

For centuries, they have been the exception to the most basic spiritual principle: that we are each equal in spirit, capable of reflecting the goodness of the divine, carriers of love. But not people with intellectual disabilities. What's a word commonly applied to them? Hopeless.

Let's consider where we are in 2008. Our politics are about overcoming division, our social movements are about ending intolerance, our great philanthropists promote ending poverty and disease among the world's poor. Are people with intellectual disabilities included in the mainstream of these movements? For the most part, no.

Why? Because they're different. Their joy doesn't fit on magazine covers. Their spirituality doesn't come in self-help television. Their kind of wealth doesn't command political attention. (The best of the spirit never does.)

Sadly, they're such an easy target that many people don't realize whom they are making fun of when they use the word "retard." Most people just think it's funny. "Stupid, idiot, moron, retard." Ha, ha, ha.

I know: I could be too sensitive. But I was taught that mean isn't funny. And I've been to institutions where people with intellectual disabilities are tied to beds or lie on concrete floors, forgotten. I've heard doctors say they won't treat them. I know Gallup found that more than 60 percent of Americans don't want a person with an intellectual disability at their child's school.

I've talked to people with intellectual disabilities who cry over being insulted on a bus. I've received too many e-mails from people who are devastated not by their child's disability but by the terror of being laughed at, excluded and economically devastated.

It wasn't funny when Hollywood humiliated African Americans for a generation. It's never funny when good and decent human beings are humiliated. In fact, it is dangerous and disgusting.

This film is all that and more. DreamWorks went so far as to create a mini-version of Simple Jack and posted it online. The studio has since pulled it down, realizing it had gone too far, even in an age of edgy, R-rated comedies.

So, enough. Stop the hurtful jokes. Talk to your children about language that is bullying and mean. Ask your friends, your educators, your religious leaders to help us to end the stubborn myth that people with intellectual disabilities are hopeless. Ask Hollywood to get on the right side of dignity.

I hope others will join me in shutting this movie out of our lives and our pocketbooks. We don't live in times when labeling and humiliating others is funny. And we should send that message far and wide.

The writer is chairman of Special Olympics and a columnist for washingtonpost.com's On Faith discussion site.