The Paauwe Report

Our continued journey...

Well, here I am, finally getting this update down.  I can't make any great excuses.  I just have to pick and choose what I can accomplish each day.  Unfortunately, I have chosen to do some other things ahead of this blog.  They are worthy things, in my book at least, and you'll learn more about them later in this post.  So, that said, I'm sorry to have kept you waiting even longer than usual.

Avery is attending school 3 full days per week.  She is in a special ed preschool class at IPS School #15.  Everything has gone pretty well thus far and we are happy to report that she has a pretty great team of therapists and teachers working with her.  Her teacher is very clam and caring.  The children literally fight over who gets to sit next to Avery during circle time.  Another brain injured girl can't stand it when Avery is upset.  She comes to Avery's aid, bringing her toys and trying to make it better. She gets this concerned demeanor when the OT works on oral feeding and she has to be assured that Avery is OK.  Even the most rambunctious boy in the class is smitten with Avery.  Apparently he is so calm around her and wants to always sit by her.  Kara, their classroom teacher, has to make them take turns sitting by her :)  They all get excited when Avery giggles or makes vocalizations. Another little boy with CP and g-tube comes up to her and lays his head next to hers or touches her face.  It is absolutely sweet and so comforting that this is the environment she experiences at school.  The head sp ed teacher also adores her and threatens to take her home with her all the time.  She comes in each day Avery is there to get her "Avery" time.  How great is that?

Avery keeps a very busy schedule.  In addition to school, she receives outside therapies.  We go to Riley on Tuesday and Friday mornings for PT and OT sessions.  We also travel to the far north side of Indy on Tuesdays for hippo-therapy at Children's Theraplay.  Now we have to add 3 sessions/wk of speech therapy, as well as 2 additional OT sessions.  It is about to be really crazy!  We are also working with Avery's nutritionist from First Steps, Trina, as a private pay.  She is coming once per month to the house to help guide us through a change from medical formula to a homemade blended formula diet...which we hope will be better for her from both a GI and neuro standpoint.  Trina is making sure that we are getting the proper nutrients, vitamins, and calories in her diet and she is tracking Avery's growth through weight and length.  We are grateful to have her assistance!  We are also set to begin working with a feeding specialist, again as private pay, in home so that we can work towards successful and meaningful oral feeding.  Doing nutrition and feeding as private pay allows them to come to our home for the treatments/consultations and saves us from having to travel to even more appointments.  Even with the expense, it is such a benefit that we appreciate.

Avery  continues to have nursing care through Medicaid disability while I am working and she is at school.  She also has a nurse that spends a few hours with her Friday afternoon so that I can have "respite" time to run errands or work on other projects.  I can't thank these wonderful women enough for the work they do for us each week.  They take such great care of Avery and they adore her!  They are great to our whole family.  We realize how very blessed we are to have them and we are so grateful!

I wish I could report that Avery has made some huge developmental gains, but she hasn't.  This is not to say that she has made no gains...just not a big leap of any sort.  She is still working hard on head control and torso control.  Both continue to get better...but we aren't there yet.  We are hoping that PT, especially the hippo-therapy, will get us there sooner rather than later.  We will see.  She has made some significant improvement in the vomiting/GI world.  We recently added a medication to help speed up her gastric motility (one she had previously been on about a year ago) and it seems to be helping in a big way.  She recently gained more than a pound over the course of 5 weeks.  That has not happened in a LONG time.  She had fluctuated between 26 and 27.5 pounds for about a year.  Last week she weighed a little more than 29 pounds.  We celebrate that success!  It will also help with the oral feeding work we are about to begin. 

On a different note, we continue to see daily seizures and she has some rough days.  We have seen a recent increase in the worst of the seizures she was previously having off and on.  Some days she's had as many as 7-10 of this particular type.  It is hard to see and it is hard to not be a bit heartbroken by them...to feel a bit defeated.  She has gone through so much to still have this many seizures, particularly this type.  Making it worse, she seems to know they are coming and she screams and looks so scared while they are happening.  I grab her and just hold and rock her through them while telling her that it is OK and that "mommy's here, mommy's got you"...but, it is not OK...not really.  I hate them...I do!  I want them to disappear so badly.  Why can't they?  Needless to say, Jon and I are now looking at what is next.  How can we help her now?  This just can't be just the way things are going to be for her for the rest of her life!  I can't believe that...I can't give up hope.  We don't know what the next step is yet...but we will.  To aid us in making any decisions, she recently had a 24 hour video EEG and an MRI.  We will see what clues those give us about our next steps.

Caiden is doing so well in school.  His midterm report was 10 A's and 2 Bs!  Of course, we are very proud of him for working so hard.  To his delight, he is now getting the chance to do even more advanced math with a group of a few other 2nd graders.  He's been talking a lot about that.  He also says that he loves science!  Well, since Jon and I both have science degrees, we find that interesting.  Coincidence, nature or nurture?  He had a Thanksgiving meal in his class this week and I was able to attend the feast.  It was fun for all the kids to eat such a meal together and to talk about all the things they are thankful for.  It's just really great that they are getting these extra experiences.  He has a Winter performance coming up in early December and we are looking forward to seeing all the kids sing and play violin and otherwise perform. 

He recently lost his 3rd tooth...one of the front top teeth.  The other one is now really lose.  I suspect he will be a true "all I want for Christmas is my two front teeth" before much longer.  Right now it looks funny, with one missing tooth and the other shifted over and sticking out.   Jon keeps teasing him and calling him "Hillbilly Caiden"...not very PC or nice, but we all think it pretty funny!   Of course, he is all excited about Christmas...though, he is really starting to ask a lot about Santa...wondering if he is real.  We ask him, do you believe he is real.  Sometimes he says "yes" and sometimes "no".  We tell him that we believe in him, but that Santa only comes to those children that believe.  For now, that's the way we are handling it.  His wish list includes nearly all Pokemon items.  When he likes something, he is ALL about it.  Too bad he is fickle when it comes to these things.  Once it was Bionicles, then Harry Potter, then it was Star Wars, next was Indiana Jones...know Pokemon.  And when he is done with one, he is DONE.  Until then, he memorizes everything about it/them.  Know, if he could just remember what he did that day at school in addition to all of Pikachu's incarnations and powers (or whatever they are called!)!

Jon is still working at INDOT and doing well.  Not a whole lot to report on his end.  He works hard, helps at home and it a great Dad and husband.   We are trying to get the house in shape for Christmas and decorations.  We are looking forward to the opportunity to spend time with family we don't get to see often.  We will be in Tell City over the holidays and we will also be having company at out house over the new year.  We finally get to meet our nephew Jack!  And see Megan and Dave...who was haven't seen for 3 years...holy cow!

We have done a lot of things over the late summer and the early fall.  We took a trip to see Jon's brother and our SIL and nieces at their house on Lake Huron in Michigan.  We had a great time!  We also participated (CRAZY!) in our churches Home Tour for the Fall Bazaar.  Om my, was that a lot of work and craziness.  We we working like mad to get the house is some sort of order to show.  I don't know what we were thinking!  Though, it did make us get some much needed stuff done around the house.  The main bath is no longer navy blue!  A few less projects keeping us from selling the house now. 

I am doing well.  I am still enjoying my work for ASK (About Special Kids).  In October, the grant I work under had some budget cuts so I now work 15 hours per week instead of 20.  We as an organization were not happy about that, but out hands were tied.  I don't mind really, except that I can't get my work done well in that little of time...but, I couldn't do so before even at 20 hours because the need is so great!  Frustrating...but welcome to the world of charitable non-profit work!  It did allow me to move to a home office set-up though...so that helps with travel costs and actually "gives" me more time to do other things since I don't have to leave the house to work!  I do miss seeing all the office-based ladies though.  I've learned so much from them over the last 9 months and I couldn't be prouder to be a part of such an amazing group of women! 

As I mentioned in the beginning, I have been working on some other worthy projects.  First, I have been working on getting the Hemimegalencephaly Family Support Network I created to be fully functional.  I am getting closer and am excited to be preparing to relaunch the website in January.  It has been a lot of work and a lot of HME mom's have pitched in to help.  This project is as much theirs as it is mine and I can't wait to see where we go with it in the future.  I hope that is will be a HoME to all HME families.

The second project is something I have long wanted to see and am very proud and honored to be a part of.  It is an organization call The Hemispherectomy Foundation.  It was founded this summer by a family from Texas whose child had a hemispherectomy for Rasmussen's Encephalitis.  We met the Hall's in Baltimore during Avery's last surgery...they we there for Jessie's consult.  In the midst of all they were going through, they found the strength and the means to start this organization.  WOW!  AS it began to grow, they asked me if I would be interested in a Foundation position as the Specialty Director for Hemimeglencephaly and Cortical Dysplasia.  I was honored, and after some initial thought and reflection, I agreed to sign on.  This Foundation is just what families, with facing or having undergone hemispherectomy surgery, need.  I couldn't be prouder of what the Hall's and their founding team have created and how much the Foundation had grown just since July.  It's amazing really and I hope you will take a bit of time to explore the Foundation website.  If you find it in your heart to offer any financial support (no matter how small) for its missions, it would be a very appreciated gesture I assure you.  It could be as simple as buying our hemi kids-designed Christmas cards...you support a great cause and get some really special and cute cards in return :)

Lastly, I am working on moving this blog to another site...yes, again...I'm sorry.  It is a free site (this one is not), which is significant in our current economy.  I plan to use it to host all the info that is in Avery's website as well...and thus close the www.averypaauwe.com website (also a monthly fee).  Doing this will not only save us money, but create one spot for those following Avery to view updates and information about her.  It will also make it more streamlined for me to manage and update both the updates and the web info.  I hope you will find it to be a good change.  You can prepare for the move to the new site even now...as it is functioning.  Just be fore-warned that Avery's Pages are still a work in progress.  I was first concentrating on getting the current info from the website transferred over.  More updates and changes will be completed in the future.  You can check it all out at www.thepaauwereport.wordpress.com.  Let me know what you think about this move...good or bad.

OK, well I think that I've monopolized more than enough of your time with this post.  I hope you all had wonderful Thanksgiving celebrations and found that you had so many things to be thankful for.  We sure did!  I also hope that this transition to the Christmas celebration of Christ's birth is one of peace, joy and connection to the true meaning.  Thanks you, from the bottom of my heart, for continuing to follow Avery's journey, and the rest of us by proxy. 

Happy Holidays and may you receive many of God's Blessings this season!

With love,
Holly

Our Vote, Your Vote

Dear Family and Friends,

I've struggled for a while with whether or not to "voice" my opinions on this election here and with whether or not I should "ask" you to support the presidential candidate that disability advocates' research, as well as my own, leads Jon and I to support. With the election a mere day away, my decision to finally discuss our beliefs and how we came to our choice here may be mute action. Nonetheless, I feel compelled to do so for Avery and for all the other families caring for a child with special needs. My intent is not to offend anyone, and I hope you will remember that should you choose to read on. Merely, I am sharing another perspective…one that you may not have considered…or one that you may not be able to fully appreciate having not lived "our" life or having not worked with families like ours on a daily basis as I do. Because of the beliefs we carry, the research we have done, the information provided by the leading disability advocate groups, and with the knowledge of what raising a child with special needs is like for us and for other families, Jon and I will be supporting Barack Obama and Joe Biden on Election day. We hope that, if you are still standing in the middle, trying to decide which way to go, that you will consider families like ours when you cast your vote. Because it does matter…it matters greatly to many families like ours. To just pull the lever and think that it doesn't really matter in the end…well, it couldn't be more wrong to think that way. We don't expect you to do so blindly or just because we've asked you to. We hope that you will take a moment to look at the reasoning behind our decision to support Barack-Biden and then take a moment to do some of your own research if you haven't already.

 

First off, I want to address Sarah Palin because a lot has been said about her selection and the fact that she is raising a child with special needs. On the surface, to many without a child with special needs, it may seem a fore drawn conclusion that a family like ours would be drawn to supporting this candidate because of our "shared" experience with her. For Jon and I, and many other special needs families, this is simply is not the case. We have chosen not to support McCain and Palin for many reasons, and none of them have to do directly with our personal conflicts with how she has chosen to proceed at this time in her family life. While I do not agree with her choices as a mother, they do not mean that she shouldn't pursue her personal ambitions or that she would not be a qualified leader. The problem arises when she voices that families like ours will have a friend and advocate in the White House if we elect she and McCain to the highest offices in the land. On the surface, if I take her at her words, that is appealing…I admit…she had my attention at the Republican Convention. However, I question that sincerity and her draw on our "shared " experience for many reasons. She is only about 6 months into this journey, and no matter how well anyone thinks they've accepted things or know where things are going to go…they don't. She doesn't know what it is like to fight the battles that so many families like ours have, and likely never will because of "who" she is. It is so very easy to say the words that so many have been waiting to hear from a politician, especially one who appears to "share" the experience. Our problems with this pronouncement from Mrs. Palin goes even further though. Until recently, she and McCain never made any specific mention of how they would be an advocate to our families in the White House…no policy statements at rallies or in any of the debates. In fact, much of what was mentioned in the debates did more to undermine this statement. Saying something alone does not make it so. There must be plans and action moving forward. And a history of inaction can speak volumes. Recently, Mrs. Palin took to offering some guidance to our families as to how the McCain-Palin administration would advocate for our families. She stated that they would call on all the best disability awareness and advocacy organizations to help them make our nation "better" for families like ours. Again, sounds great on the surface…but, the truth is that these groups have been around for many, many years and available to politicians and administrations as a source of information and guidance on how to serve our families and meet our very real needs. Unfortunately, the Republican Party has not a history of consistently working on significant disability measures or reforms that really affect the everyday lives of families such as ours, and as such, many of these groups do not support this McCain-Palin ticket. In fact, they have supported many policies that make every day a little harder or a little more frightening. To be fair, both parties' candidates have policy sites where you can read about their policies on disability issues that affect our nation. Please read them here: Obama-Biden and McCain-Palin. For a comparison between the 2 tickets plans on disability-issues, please see this document: 2008 Presidential Candidate Positions on Disability-related Issues.

 

It would take me days to fully describe the struggles families like our, and families worse off than ours, go through daily and in the course of their child's lifetime. None of it is black and white…and there are no simple and easy explanations. Without living it, it is impossible to truly know and appreciate. And that it the honest truth. So, here I touch on just the biggest issues, though they all have so many branching issues and ramifications that I am afraid they are rather simplified in explanation.

Every day, families like ours struggle with:

1. Getting their child access to the education they need and in the format they need it as entitled to by law, also known as special education;
2. Getting not only access to heath care for their child with special needs, but appropriate health care that will provide rehabilitative services that aren't limited to peanuts and that doesn't force them to remain in poverty to cover just that child;
3. Having access to the supports and services they need to care for their loved at home long-term (at a significantly lesser expense, even with those supports and services) instead of the state caring for them in state-ran and financed institutions (wait list in Indiana are 10 years long, and in other states, even longer);
4. Having their child valued as a human being and for what they can do, instead of what they cannot do;
5. Having true accessibility throughout our society and meaningful inclusion in it for their children as well;
6. Staying financially afloat with all the additional strains that are placed on their income (which is often limited because they are caring for their child at home and in the community);
7. Maintaining a strong marriage with all the additional stress having a child with special needs brings to it (it should be no surprise that statistics show a higher divorce rate in families like ours);
8. Maintaining our personal health, as most of our energy and resources go towards helping our child reach their highest potential;
9. Staying connected to our "typical" children so that they don't feel cheated of their childhood and starved of our attention;
10. ….etc, the list could go on and on.

 

In Indiana, special education is governed by what is known as "Article 7" law. The Federal Gov't legislates what States must provide, at a minimum, to students qualifying for special education. This Federal law is known as IDEA (Individuals with Disabilities Education Act). States can adopt regulations which provide more…but they can't do less than the Fed has defined. Why is this important? Well, the Federal Government is defining for States what must be provided, as they should or there'd be a whole different set of problems, but not providing all the funding it promised. Now, States are expected to comply with the rules, but without the full monies set aside and promised for such purposes. This is not right. IDEA must be fully funded. Obama has supported this historically; McCain is only recently in support of this, but at a slower pace (5 years until full funding achieved under his plan). Voucher programs that support sending funds to private school placements actually put children in special education at greater risk, b/c they are left behind in the underfunded and understaffed public schools that were abandoned by general education students in favor of these private schools through vouchers. There is no incentive for these private schools to take our children in special education into their programs and provide them with an education appropriate to their needs (as required by law in public schools). Vouchers are nothing more than a band-aid and do nothing to fix the actual issues plaguing our nation's public schools. With adequate funding, our public school can provide the education that our children in special education need and as required by law. Hard decisions must be made and schools must be held accountable, but only after having been given the tools to actually have a chance at succeeding. Parent's must have access to health care for their child with special needs that does not force them to live in poverty to get the coverage their child needs. Parent's must have the support and services to care for their child at home when first needed, not 10 years later.

 

So many of you watched Jon and I struggle with the birth of our sweet, sweet Avery. So many of you dug deep into your hearts and your pockets to support us, both financially and emotionally. Because of that, we survived and even thrived to some degree. What Jon and I want you all to realize is that not all families are like that. Not all families are that supportive. Not all of them have the financial means to help in such meaningful ways. We were lucky to have you all…and blessed that you cared enough. But, every day, there are families like ours, that are not keeping their heads above water…that are having to make decisions that were even harder than ours to allow doctors to remove half of Avery's brain. Families choose to give up their children, not because they want to, but because they have no alternatives. I know that many of you felt that by helping Jon and I, you received a far greater gift in return. The same is true for helping others…even if you don't know them.

 

This presidency is not about race, it is not about gender, and it's not really about age or political party either. I want to point out that none of these candidates have meaningful executive level experience (Palin's current stint as Governor of Alaska could be arguable, but she governs a state whose total population is far less than any major metropolitan US city). It is not always about experience anyway when it comes to the Presidency. It is more often about character and judgment. It is about the ability to bring informed people together to make informed decisions and policies. It is being big enough to listen to a counter opinion and even changing your mind when new facts warrant it. It is about the ability to lead and to think bigger than one's self. It is not about pro-life or pro-choice, it is about preventing the need for such a decision. It is not about pro-guns or anti-guns, it is about protecting innocents from gun harm at the hands of felons or the mentally ill. It's not about marriage between a man and women vs. marriage between persons of the same sex, it is about the right to obtain benefits and visit your significant other in the hospital. It is not about same-sex marriage ruining the sanctity of marriage in our country…it's a divorce rate of 50%+ in heterosexual couples pushing that sanctity to it's limits. In the end, it is about tolerance, understanding and compassion…about doing what is right by each other. It is about taking care of each other, because we do not live in our own little microcosms. What we do or do not do DOES affect others. Our neighbor's child's quality of education does affect us. The financial state of our neighbors and communities do affect us. We are not isolated to only our deeds and our successes and failures. Each sends a ripple into our community and our greater collective whole. It is so easy for us as religious persons to stand up and profess our righteousness through our religious beliefs, without really evaluating if we are truly living the life God meant us to. Did Jesus leave those in most need behind? Did he look at color of skin or place in society as a means to value or devalue others? Did we all not come from the same maker…black, white, brown or red skinned as we may be?

 

Jon and I support Obama because he has a meaningful plan to improve the lives of individuals with disabilities and the families caring for them. Not only is his plan more detailed, but it is also more thught out and better aligned with what families like ours are REALLY needing. We support Obama because he professes and speaks of nothing but unity and of standing up for those who need it most. We support Obama because he has shown that he is a capable leader by answering questions time and again with real answers and with specifics and with an honest and knowledgeable zest. We believe that he is a man of his word and that we would truly have a President who is looking out for ALL of us, not a chosen few. His skin color makes us no difference. His gender makes us no difference. His political party makes us no difference in so far as the person he has shown to be. For Jon and I, the risks to our family and other families like ours is just too great to vote otherwise. In fact, in our opinion, the risks are too high for ALL families for us to vote differently. Taxes are an inevitable. There are some things we must pay for, as a collective good for all. Some things government can do better than we can alone…and some things they must. It is not about higher taxes and more spending. It is about fairness in taxes and about smart spending and smart budgeting. New spending can be offset by reductions in ineffective and wasteful spending, such that no new net spending results. To imply that new spending will increase the overall budget is nothing more than trickery. We believe that Barack Obama has the right plan for America and no matter how many distortions have been made about what he has said, he has continued to say the same things time and again and with the same clarity. If there is any confusion about what he has said or what his plans are, it is from those who seek to distort them for their own purposes.

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.

Are you watching Hopkins 24/7? You should tonight!

Just wanted to let you all know about the Hopkins 24/7 program that is airing on ABC as a multi-episode special.  Tonight it will show Dr. Jallo, Avery's neurosurgeon, helping a child with a brain tumor.  You can check out the info for it at https://www.hopkins.abcnews.com/episodes/5.  The website even features Dr. Jallo's profile on it (https://www.hopkins.abcnews.com/dr_profiles).  Take a look at the videos about Alexis and her brain tumor that are available under his profile.  You can see him "in action" in them.

.

Jon and I watched the episode that aired last Thursday...boy, did it ever bring back a flood of memories!  I could recognize the "sounds" of that hospital, especially the surgery area and the Children's Center instantly, no matter where I was in the world.  I know those are things that will stay with us forever.  We even recognized a couple of the nurses last week.  Honestly, it was odd to be looking in on it from the outside, per say, after spending so much time living it.  We felt so deeply for the families and their journeys.  I guess it is so easy because we know those feeling ourselves...first hand.  Anyway, we just wanted to share this with those of you who have been following Avery's journey and might be interested in seeing the man who has taken Avery, safely, through 3 brains surgeries and the hospital where she has endured it all and where we have spent so many hours praying and hoping and believing that anything is possible with faith and a great team on your side.

So, watch with us tonight, if you can.  It is on at 10/9 c on ABC (following the Grey's Anatomy rerun).

Peace,
Holly

NO GIFTS EXPECTED...

but since some of you have already insisted...and want to know what Avery "needs"...

I put together a little document of items we are looking to get Avery in the near future.  Some are necessary to replace those items she is using but is losing this week when First Steps ends (FS owns them and we must now find our own).  Some are items that will make it easier for us to do some home play/therapy/cause-effect with her.  Please realize that we would NEVER expect anyone to buy her any of these in their entirety...please only consider a gift amount towards their purchase...and ONLY if you feel you must.  We really DO NOT expect gifts for this celebration...it is about celebrating the journey thus far and the possibilities and hopes for Avery's future.  We have received the greatest gifts so far...having Avery with us still...3 years after the devastating diagnosis...and having more hope for her potential than we could have believed at that time.  We are truly blessed by those things!  And we will be more than blessed by your presence alone for the celebration on Saturday.

With that said, click here to see the document if you still need an idea...

Download giftideas2.doc

Much love and thanks,
Holly

YOU'RE INVITED!

Click on the file below to see what to!

Download bday3.invite.pc.97-03.doc

Please feel welcome to join us in the celebration!  We appreciate everyone who has followed Avery in this journey (reaching 3 years now!) so far.  We feel like turning 3 is a big milestone.  Avery starts special services developmental preschool later this month and we are looking forward to this new opportunity that will, along with us, continue to challenge her and push her to achieve her highest potential.  This opportunity comes with a downfall though...it means that she has aged out of the First Steps early intervention program.  This bring sadness because it means we will no longer see all the wonderful ladies that have been a part of Avery's First Steps therapy team...a group of ladies who have worked hard for Avery and who have championed and celebrated her every success and who have worried and fretted themselves through all her medical interventions and continued seizure activity.  To be sure, these woman will all remain a part of our lives in some way, but to not see them every week will be such an adjustment.  They have been so good for Avery and Mom too!  We can't thank them enough for their work and their commitment to the jobs they do!   Please don't be surprised if you see me shed a few tears through this transition.  First Steps Ladies...if you are reading this...Jon and I thank from the very depths of our being for ALL you have given of yourselves to our precious Avery.  Each of you have touched us in profound ways and made a huge impact on not only Avery's life, but our whole family's.  Please accept our immeasurable gratitude!  You ABSOLUTELY always have an open invitation to call...stop by...whatever!  You have been and will continue to be a beautiful part of Avery's extended "family". 

ALL:  Please send me an email at holly1224@sbcglobal if you think you can help us celebrate on Saturday.  We would love to have you!

The children (all have had hemispherectomies) and the Moms on Sunday, June 29th.  2 children/Mom combos missing that couldn't be there on Sunday too.

I promise...I will update in full soon!  For now...just know...We had the most AMAZING time in Kansas meeting up with the other HME families we "know" through the Yahoo group.  I can not put the experience into proper words...just know that we were hugely affected by this gathering and we CAN'T WAIT to see everyone again next summer!  Check back soon for links to pictures (actually, go here for now hmegathering2008.snapfish.com/snapfish) and additional SPECIAL FRIENDS links.  I know that there are so many people who struggle and no shortage of people to lift up in prayer, but I humbly ask you to keep each of these families in your prayers through the weeks and years to come.  It is a long journey, though we all have risen to the challenge so far and are eager to continue rising to it in the many days to come (God willing)!

Love and Hugs,

Holly

I couldn't have said it better myself!

Wanted to share something I across today.  This comes from the UCP site and was written by a mom whose child has Down Syndrome.  As I read it, I kept saying to myself, "this is exactly how I feel", "this is exactly what I want others to know", "this couldn't be more perfect if I had written or said it myself."  I'm betting that a lot of my special mother friends would agree.  Thanks to this mom for putting pen to paper and sharing it for all to see! 

Please don't pity me, my daughter or my family.  We are all just fine.

As I See It…A Parent's Perspective

By a Mother in Pennsylvania

Recently while talking about the stress and whirl-wind activities of life with kids, one of my friends said she coped with her day to day life by thinking of people in the world who have it "worse off than me". She then looked at me and said, "Like you." Now, because I was shocked and totally unprepared for this comment, I stared at her like a deer caught in headlights. I assume that this mother of four under 5, looks at my life as "worse off" than hers because I have a child who has Down syndrome.

Never before have I thought of my life as being "worse off" than anyone else's. Is my life hectic? Yes - I have three children, a husband, a job, a home, and a very sweet little dog. I also have a few hobbies I like to participate in. My children play soccer, baseball and softball, take art lessons and gymnastics, and participate in after-school activities. Do I have extra work to do because I have a child with a disability? Absolutely! Not only do I have to deal with all the normal things kids do, but I also have to know all there is to know about Down syndrome, about Special Education laws, about my son's legal rights, about Estate Planning and setting up trusts, about how to talk with my daughters about their brother, about how to talk with neighbors about Down syndrome, and yes, occasionally how to talk with family members about my son. I also have to deal with the prejudices of others and I have to educate those people - a not so easy task.

But let me set the record straight. We are not "worse off" for having a child with a disability. Our eyes have been opened to people and issues we would never have been exposed to otherwise. As a firm believer in the old adage that things happen for a reason (not to mention, what goes around comes around), let me tell you a few of the ways this child has changed my life. I have become more patient, a trait that has surely affected my relationship with more people than just my son. I have learned tolerance, for those who have different abilities than I, for those who have different opinions than I, for those who look different than I. I have been exposed to a whole new world of people whom I never would have known if not for my son, people who spend their lives advocating for people with disabilities, people who struggle with every movement yet keep on moving, people who get knocked down time after and time yet get up and continue to try. I have met other parents who walk much the same path that I do and have been amazed by their strength and courage. I have opened a door to a whole new career for myself that I would never have noticed if not for my son. I have seen wonderful children learn about disabilities and say, "Okay, but he's still my friend." I have been deeply affected by my own daughters who look at people with disabilities like the rest of the world ought to. I have experienced a love so deep for this beautiful little boy that anyone who dares to cross him should be concerned about me. I am absolutely a better person than I was 10 years ago - without a doubt.

Now, having said all that, would I trade my life to remove that extra chromosome and give my son a chance at a "normal" life? Of course, I would. Most parents in my situation probably would. But don't look at me - or any other parent of a child with a disability, if I may be so bold as to speak for all of us - as "worse off". Our children are gifts to our lives and enrich us in ways no other parent could ever imagine. I don't want to be your mechanism for coping and I also don't want or merit your admiration. I am just a Mom, hopefully a good one, doing what I have to do for my kids. What I want for my family and especially for my son and my reason for writing this essay, is for you to look at him through the eyes of acceptance, not pity. He is a beautiful, charming, sincere young man who has much to offer his friends and family. Instead of looking at people who have disabilities with sorrow or pity - look at them and see what they do bring to you. Look at each person for what they can offer, not for what they can't. Make our community a welcoming place for all people. Learn what you can do. Seek out people who can help you understand - look to non-profit human service agencies for guidance. In my role as Community Relations Coordinator for UCP Central PA, it is my purpose to be there and answer your questions. But you have to ask those questions and you have to be willing to accept the answers. As I see it, my family is not "worse off" than yours; my family is different than yours. And like yours, my family is beautiful.

Inclined to Share

Just wanted to share a "poem" of sorts that I found in a MUMS Newsletter the other day at work...

I Asked God...

I asked God to take away my pain.
God said, No.
It is not for me to take away, but for you to give it up.

I asked God to make my handicapped child whole.
God said, No.
Her spirit is whole, her body is only temporary.

I asked God to grant me patience.
God said, No.
Patience is a by-product of tribulations; it isn't granted, it is earned.

I asked God to give me happiness.
God said, No.
I give you blessings. Happiness is up to you.

I asked God to spare me pain.
God said, No.
Suffering draws you apart from worldly cares and brings you closer to me.

I asked God to make my spirit grow.
God said, No.
You must grow on your own, but I will prune you to make you fruitful.

I asked God for all the things I might enjoy in life.
God said, No.
I will give you life so that you may enjoy all things.

I asked God to help me LOVE others as much as He loves me.
God said...Ahhh, finally you have the idea.

~Author Unknown~

For some reason, this really spoke to me.  Maybe it speaks to you now too.

FYI: I have been working on a website for an HME Support Group and have recently added some content.  You can check it out by clicking on the link on the left side of this blog page.