Botanical Gardens and Play

Today Maizie and I went to The Botanical Conservatory with Susie and Chloe. Susie and I took pictures of the girls. We had so much fun. The flowers smelled wonderful. Maizie and Chloe had a blast climbing through the worm tunnel, twirling in their beautiful dresses and checking out all the learning stuff.

Afterwards we went to one of our favorite restaurants Mi Pueblo. Yummy!

Later that day Maizie and I picked up her cousin Daniel to spend the night. I talked him into watching Woody Allen's Love and Death. I can not believe he agreed to watch it. I think he really enjoyed the movie.

A Diagnosis

This afternoon Dr. Parikh called with news on Maizie's tests. There are more tests we are waiting for but a big piece of information warranted a discussion. Here, we now enter the world of genetic disorders. I never dreamed we would be given such a specific answer to Maizie's health issues. While listening to the doctor I was moving between wanting to slide down my chair and cry with grief and at the same time relief and of course fear for Maizie's future.

Maizie has an extra chromosome 6 (trisomy 6...see number 19 on this link). This is complicated and rare. One thing all the doctors always agreed on is that Maizie is a "complicated" child. After nine years of searching, reading, going to specialists, knowing in our hearts that something was not right...we finally have an answer, a diagnosis without a name.
This duplication of chromosome six has 50 to 100 genes within this tiny piece. So, this means that there are 50 to 100 genes in duplicate on this little dot. This little island that has brought us and Maizie so much anxiety..so much pain and yet... here is Maizie. Unique and totally her own lovely, gregarious and beautiful little angel. Chromosome 6 is apparently still much of a mystery. A duplication of this gene however would explain all of Maizie's developmental issues, sensory disorder, seizures, muscle weakness, IGG deficiency and as Joe and I know...the list goes on. There is obviously no cure, we did not expect there to be one. This extra chromosome was there at birth. It is part of her unique DNA design. There are however, things we need to do and look out for in Maizie's future.

Maizie has a heart murmur and needs to have an ultra sound done on her heart and abdomen. People with chromosome disorders often have problems with organs so this will always be a concern. I am relieved we know to look and devastated that we have to.

The good news is that chromosome changes can get better in time. Maizie has improved in so many ways and become much healthier and developed a great deal in the just the last year. She has very few respiratory infections and fights off illness better. We do feel, through ongoing care and prayer that this will only continue. We have always believed this and always will. I would like to think that the worst of Maizie's health struggles are behind us. We have her seizures under control, she sleeps better, can learn when taught in unique ways and has progressed socially in ways that just two years ago we would have never thought possible.
I remember when she was suffering from four to six seizures daily and barely able to communicate or sleep...a few people had told us we would be better off reversing the adoption. Someone once said that putting her somewhere where they knew how to deal with a kid like her would be better for her and of course better for us. I am sure this advice sounds ludicrous to people who only know her more recently. We thought it was bad advice at the time but I can understand where some people may have believed a group home would have been our best hope. A lot of focus was put on what would be best for Joe and me.

For some people since she was adopted it seemed we should have less concern. Like we should just give up, move on and adopt a "healthier" baby. I remember feeling disgusted at this advice. I am proud of Joe and I for never taking advice like that. I can not imagine where she would be now without us. She certainly would not be devouring books, writing her own blog and enjoying her obsession with barbies. I am convinced she would have retreated more into her own world and with anxiety and ongoing seizures Maizie would have severe brain damage.

I am thankful for family and friends that have stood by Maizie and worked to understand her and most importantly, always loved her and knew she was meant to be our little girl. When things have been really bad and people say, "I don't know how you do it?" Well, there is an answer to that. We did it through faith and prayer. We asked God to help us, to help Maizie and we knew that He would. So many people have been praying for Maizie for so many years. It really moves me when I think about this.

I feel like since we first took Maizie home with us as an at risk adoption that we surrendered a part of ourselves to God. We gave Maizie to God over and over again. We said many days, "Please God. We love Maizie and want her to be ours but if she is meant to be with parents other than us we will accept that. We will surrender her to you and love her always." It was the most painful experience I have ever been through. Luckily, God sent her back to us and we have been blessed with caring for her ever since. Those who lived through that time with us know how difficult it was.
That was only the beginning. With illness came frequent hospitalizations and behavioral challenges...once again, surrendering to God made all the difference. When you love a child and lose so much control in caring for them, are helpless in making them better the only true place to turn is to God. Only He will be there with you when you are alone with that child and at your absolute wits end. I like the word 'surrender' and it is so difficult to do. To surrender to God. I can not imagine living my life any other way. I would not want to. One time when Maizie was hospitalized at age three for one of her worst bouts of undiagnosed seizures and insomnia I had found a rock in a store that had the word 'surrender' engraved on it. I bought it and it still sits on a shelf, reminding me that Maizie is God's child.
Being parents we always doubted and beat ourselves up...a lot. But, we always knew Maizie needed us and that we would help her get to a point to where she could be a kid and enjoy it way more than she had been. So much of her infancy and toddler days were spent vomiting from seizures and having endless emotional melt downs from her body feeling so out of sync with everything. But, always there was Maizie there...loving us, showing us total joy and unabashed play, excitement for life, waiting for us to find the right help, the right medications and therapy.

I feel sad that she will struggle with so many things I take for granted every day. I wish I could make it all go away and that she would be healed. I also know that compared to many children with genetic disorders she is truly blessed with her skills and functioning ability. Maizie will continue to fit a mish mash of developmental disorders, PDD, AUTISM, learning disorders etc. This is for us, an answer as to why she never clearly fit any one diagnosis.

Joe and I are glad that we now know it was not a brain injury caused in foster care or from vaccinations or diet. We get questions relating to vaccinations and diet a lot. There are many debates around these topics. Joe and I practically became experts on them. When Maizie was a toddler we did many different diets, "treatments" and had many tests run for allergies, lead poisoning and the list goes on. Nothing helped her improve until her seizures were diagnosed and she went on Lamictal to control them.

Maizie's developmental issues and seizure disorder began at birth, not after her shots. Her problems did worsen over time but only improved through the help of modern medication, our insistence on not letting her retreat into her own world, private tutoring with Jeanne using some of the Lindamood Bell learning system, lots of trial and error with discipline methods, physical and occupational therapy and of course lots of prayer and insisting on having fun as a family no matter what.

Chromosome 6 is not a common genetic difference so I don't expect there to be too much information on it. I believe information is power so this is hard for me to accept. I guess we will study up on DNA stuff. The exact location is even more specific than Chromosome 6 but for simplicity, I will just call it that. I was really hoping we would come away with a 'name' for a diagnosis. I realize though that this information we have been given is a gift and I am truly thankful for it. Having some answers does bring new light.

http://www.livingwithtrisomy.org/

March of 2008
Since this post Maizie has been diagnosed with Cyclical Vomiting Syndrome. It is possible that she is having seizures. We do not have conclusive evidence of seizures but considering her biological predisposition for Epilepsy the neurologist is being careful. It is more likely that what we thought were ongoing seizures was actually cyclical vomiting syndrome. It is common for children to go undiagnosed for years and be treated for seizures instead. Obviously this is less than ideal for a child with CVS. One abnormality has been found in her heart but we are told it is nothing to worry about at this point. She will require another EEG at about age sixteen. Also, her abdominal tests back fine.

Our New Plant

Sunday I picked up a yellow phone book bag that was next to our air conditioner which is near our back door. I figured it had blown there like lots of the other trash I pick up around our home. Feeling that the bag had something in it I reluctantly took a peek. This is a brave thing to do considering some of the trash that winds up around here.

I look in and see a tiny blue glass with a pretty green baby plant in it. I take it out of the sack and look around. Is this a joke? Is there something wrong with this container that someone had thrown it in the trash and placed it so close to my house? There is no way this would have blown behind our air conditioner.

Against my better judgment I take it in the house. Maizie runs over and latches on to the lil' plant. "Oh! Where did you get this? Is this for me? I want it! I like it!" I tell her we can put it on the front windowsill for a while and see what it it grows up to be. She runs to the front door and places it on our front window sill next to the plant she planted last week.I mention to Joe the little plant I found and we all pretty much forget about it.

The next day I am outside with Maizie working in the yard. Our new neighbor kid walks near our air conditioner and is looking behind it, under our steps and begins to make me a bit nervous. I go over and ask him what he is looking for. He says, "I put a yellow phone book bag over here. Have you seen it?" Immediately, I feel my face flush and I feel pretty foolish. I reply, "Well, if you put something on our property that looked like garbage I would have thrown it in the garbage." He runs to his apartment's trash cans and begins rummaging through them. Gross. Finally, he walks off.

Maizie says, "Was that baby plant his? Is he going to make us give it back?" Smart little girl! I have her come inside with me and tell Joe what just went down. We go to the plant and I take a real good close look at it. Oh, my. I must have been blind before. This is a little marijuana plant. Joe begins to laugh maniacally. Joe examines the plant and says he will look it up on the internet. Sure enough, its a cute baby marijuana plant. I ask Joe if he thinks he should call the landlord again or the police. We both stare at one another. No idea how to handle this. Maizie hears the word 'police' and begins to panic and cry a bit. She says,"Don't call the police! The plant is good."

I realize how absurd this must all look to Maizie. We find a bag with a little plant, save it and then suddenly we realize its our neighbors plant and we are considering calling the police. It has to make little to no sense. Do I explain about "bad" plants and drugs or just drop the issue. We down play the situation and move on with our day once again.

Later, we decide to call the landlord who tells us to call the police. I ask for the boy's name and the landlord tells me he will call back with his name at 8:30 p.m. No call. Joe and I once again stare at one another and then stare at the lil' plant.

Thoughts of retaliation and stupid young kids slashing our tires run through our minds. When we first moved into our house three of Joe's tires were slashed. I am not sure if that was a neighborhood rite of passage or what. I envision my innocent self being hauled away to prison on charges of possession. One of those people in prison who really has no business being there at all. That would sooooo be my luck! I laugh to think we had a marijuana plant in our front window for a few days! We both agree to think about the issue some more.

Later that day I am cleaning up the kitchen and holding a bag of trash in my hand. I reluctantly grab the lil' plant, make an executive decision and throw it in the trash. It seemed so sad to throw this living plant into the trash. At the same time it was a relief and seemed like the right decision to make.

I don't foresee our neighbors growing any real profitable crops in their one room apartment any time soon. Hopefully I did the right thing. And, yes these are the same two guys we called the cops on last weekend. Looks like they have big dreams. Not too bright...hiding the plant right by our back door and leaving it there for a few days. I am sure they stashed it there when we called the cops last weekend. Lovely.

Welcome to the Neighborhood.

Don't get me wrong...there are many things I do like about our neighborhood. There are also many things I don't like. For instance, having to keep the desk Sargent's number on my speed dial. The winter has been quiet. In fact, I don't think we made one call to the authorities. Tonight we were watching the movie Crank...great movie. We hear doors slamming and angry fighting. Joe and I jump up and look outside. Oh, yeah! Grab the cell phone! Quickly look for the desk Sargent on speed dial and call the cops. Run back to the window only to see an officer at the neighbors house! Wow. That was fast. Someone else must have called before we did. Next, we call the landlord...it is almost midnight...but, hey he should know every time we have to call the cops. Oh, I guess we did have to call the landlord this winter due to the lovely tenant that vomited all over his own porch, our front porch and between the two houses. I was not about to pick up this disaster! Joe bravely called and insisted the mess be cleaned up before we returned home from church. I have to give the landlord credit...he cleaned it up before we returned. Thank God! My prayers were answered. We are hoping in time this method of keeping the landlord highly informed will force him to find renters that are less...shall we say 'questionable'. Now, my adrenaline is pumping and I can't sleep. It is way past my bedtime! Soon summer will be here and the action around here will blossom. Wahoo. Joe just corrected me...the vomiting episode was last summer because the heat really added to the...shall we say...aroma. The photo above is our house before our good friends John and Cindy Husar got a hold of it. It has been on the house tour since then. Seriously. There are some classy aspects to our neighborhood. No...seriously...okay...fine...I am going to bed! Don't get me started.

Spring is Here!

Today we visited The Learning Garden. We picked up Maizie's cousin Christian on the way. Once there the kids planted bulbs. Christian chose to plant a Lilly of the Valley.

Maizie loves Spring and has been insisting the flowers should hurry up and grow! Maizie and Christian enjoyed watering their baby bulbs. Once done Maizie helped Angie make three for Onika, Moreah and Azriel. We missed them today! We will see you next time!

After the planting Maizie was able to share what she had been working on in homeschooling. They call it the Homeschool Showcase. Maizie was a bit shy about this so she had me show her stuffed puppy and the story she typed on the computer describing it. She had drawn an adorable picture of the puppy too. It was great to listen to kids reciting poetry and sharing their drawings. At one point Christian stood up and took to the stage. He stood there real quiet like. We all waited. Christian just turned four and was not prepared to present anything. He finally said, "I'm scared." and sat back down. We all clapped for him. He was brave just to want to share something. So cute!

Christian came home with us to spend the night. They were a non stop flurry of activity. Upstairs...then downstairs...then upstairs again. I am so tired. Christian helped me make dinner while Maizie played. He was asking me all kinds of questions about our gas stove. He has probably never seen one before. After dinner they got out the karaoke machine and sang Disney Princess Christmas Carols. Ah, the joy of listening to carols...princess carols...in march. Ugh. Anyway, they danced so cute and Maizie was really getting into character. I wish I could have been recording it.

Darwin has to be where the action is. Christian was very surprised to see himself on the little screen. Maizie tried to get him to be the announcer and present her to the audience but he refused. Maizie was singing and dancing so sweet. At one point Christian said, "You are beautiful Maizie." They are so close. I love it.

Time to do my homework...not!

Did I mention that I really don't want to do my sociology homework? Yup...I should be cracking open that 'put me to sleep right now' reading material...but it just is not happening tonight. I will have to buy me a big ol' bag of motivational M&M's tomorrow.

It Spins!

This weekend we are going to see the ballet Cinderella. Little Miss Maizie needed a new dress for the occasion. Kohl's always has cute dresses so off we went. Maizie was in the mood to shop! She tried on six different dresses. Luckily, we had a large dressing room so she could try out the most important dress quality...the 'spin'. It is interesting that some dresses just spin way better than others. She settled on a long, light pink dress. She looks beautiful in it and it is top notch spin quality.

Even though we had a long discussion about where and when the dress would be worn she immediately began insisting that she would wear the dress the minute we got home. Nope. It is for the ballet first and then she can wear it as often as she wants. Suddenly, she insisted the ballet is "now and not next year". Argh. Understanding the passing of time is a big challenge for Maizie. Once home we put the dress in my closet for safe keeping and Maizie apologized for 'begging' to wear the dress. I apologized for my short temper, we ate dinner together and then played a nice game of Yahtzee. Maizie won!

Our Trip to The Center for Pediatric Neurology at The Cleveland Clinic in Ohio

We are back from the Cleveland Clinic's Children's Hospital. We stayed at a Holiday Inn in downtown Cleveland. I must say it was the dirtiest hotel we have ever been in. I spent the first ten minutes cleaning the bathroom in our room. Finally, when I realized it was beyond filthy we called the front desk. They told us no one could clean it since the cleaning staff was gone for the day. They wanted to know if we would change rooms. Maizie was in her p.j.'s ready for bed. There was no way we could move peacefully from one room to the next. It probably would have been just as filthy. Later that night a couple walked right into our room. Apparently they had been checked into our room also. Lovely.

One little known thing about Joe and I is that we worked together at the Luxbury cleaning hotel rooms during college. We know a thing or two about what goes down when it comes to cleaning hotel rooms. I am surprised we can get ourselves to step foot into any hotel.

We woke early the next day to navigate to the Cleveland Clinic. We drove through down town and into an area that looked war torn. There were pot holes we could have waded in. Most everything was abandoned and rather scary looking. About five minutes later we had entered the Clinic area. There were several parking garages joined together with many buildings that went on and on. Luckily, we had our route all planned out. Once into the parking garage we walked in an under ground tunnel to the Children's Hospital. We found the Center for Pediatric Neurology department easy and were called in shortly after arriving.
Dr. Parikh specializes in Neurometabolism and Genetics. He was kind and communicated well with Maizie. He began by asking us questions about Maizie's birth and as much birth parent information as we could provide. Luckily, we met both of Maizie's birth parents and a biological Grandmother so we had more information than most adoptive parents are given. After sharing that information we had to answer many questions about Maizie's developmental milestones, behavioral issues, eating and educational skills. The interview was almost two hours long. The Dr. was very thorough. He explained to us what he saw as red flags in Maizie's developmental and birth parent history.
The Dr. felt confident that Maizie was somewhere on the pervasive developmental disorder spectrum. If this is the case then Maizie may continue to improve over time in many areas. He did agree that she was having seizures that were being controlled well but could improve with an increase in her medication. He ordered lab work to see if the medication could be increased to try and slow down her seizures even more. He thought that Maizie is on a good medication, vitamin and Omega 3 regimen. This made us feel quite relieved since I have done much advocating to keep her on the current medications.

He explained to us about genetics and the role they play in genetic, metabolic and mitochondrial disorders. Maize has many clues that lead to the possibility that one or more of these disorders could be present. The red flags are as follows.
1. developmental delays
2. birth parent history (epilepsy, delays, etc.) leads to possible inherited genetic disorders
3. genetic physical features that are present
4. seizure disorder since infancy
5. blood tests reveal lowered immune system
6. chronic leg pains
7. lack of energy, 'off' days
8. chronic constipation that is not medication related
9. self restricted diet, such as trying not to eat protein
10. a heart murmur
11. chronic sleep disturbances
12. extreme sensory issues
13. anxiety

The second days appointment was a physical exam where he determined that Maizie has four genetic physical features that may point towards a genetic disorder. All humans have one or two of these but if you have more than two it is a red flag that a disorder may be present. They are finding that specific genetic disorders can be present without the stereotypical physical features of a disorder. An example would be Williams Syndrome. Maizie fits some of the characteristics for this disorder except she has none of the physical features. They are also discovering that Rett's Syndrome is showing up in many "lighter forms" than ever thought possible. DNA studies are amazing and revealing more every year. It is good that we will be testing for specific missing links in DNA to reveal if a disorder is present without guessing. So many of the disorders can seem fitting but DNA testing is the one sure way for diagnosing.

Maizie had an urine and blood test that will look for 900 genetic disorders and various metabolic and mitochondrial disorders. As usual Maizie was an angel for this test and picked out a Dora the Explorer sticker that talked about being brave. Very fitting. We will have the results back in four weeks. If nothing is found we will do blood testing for up to three more batches. If nothing is found we will choose whether or not to go further with a spinal tap and a muscle test. There are some disorders that can only be found this way. We hope that we will not have to decide whether or not to do these procedures since they are inpatient, require anesthesia and are painful.

Our second day appointment went fast. Joe and I had a few questions for the doctor and he was very good in taking the time to explain things to us. He had the following recommendations.
1. See a cardiologist to do an ultra sound of her heart
2. See her physical therapist for ankle orthodics to help with her leg pain
3. possibly raise her Lamictal to reduce seizures
4. find an autism specialist to help with behavioral and learning difficulties
5. see her gastroenterologist again
6. Revisit the clinic in six months
7. No food or diet changes needed unless a possible DNA test reveals a disorder where this would be necessary.
8. Consider trying the medication Stratterra to help with attention (this was recommended by her current psychiatrist and we refused,we may reconsider this, it would help with focusing)
9. Do an inpatient EEG. We can wait on this till a bit older or seizures increase.

After the appointment we wanted to do something fun in Ohio. We visited the Cleveland Children's Museum. It was set up like a town for little kids. There was a bank, a grocery store, nursery, doctor's office, bus station and many more fun places full of activities. Maizie loved the giant sand box the best. It was a huge room filled with sand and based on an Egyptian theme. Parents and kids were creating sand castles and pretending to cook. I was happy Maizie was willing to take off her shoes and play. Once in, she did not want to leave.
We also ate at in Little Italy at a great Italian restaurant called Trattoria's. Maizie and I shared a cheese and mushroom pizza. The atmosphere was nice and reminded us a bit of some of the restaurants we liked in Jersey.

The ride home went fast. We were so ready to be in our own beds! We are thankful for everyone's prayers for a safe and productive trip. We felt the prayers! It is a relief to be moving in a direction towards answers. Finally!

Favorite Movies

Annie Hall 1977
Director: Woody Allen

The Joy Luck Club 1993
Director: Wayne Wang

Henry and June 1990
Director: Philip Kaufman
Stars: Maria de Medeiros, Uma Thurman, Kevin Spacey, Fred Ward
Based on the book by Anais Nin

The Lover 1991
Director: Jean Jacques Annaud
Stars: Jane March, Tony Leung Ka Fai
Based on the book by Marguerite Duras

Romeo and Juliet
Director: Baz Luhrman
Stars: Leonardo DiCaprio, Claire Danes

Radio Inside 1994
Director: Jeffrey Bell
Stars: Elisabeth Shue, Dylan Walsh

The Big Chill 1983
Director: Lawrence Kasdan

The Breakfast Club 1985
Director: John Hughes

Pretty In Pink 1986
Director: John Hughes

Whole Wide World 1996
Director: Dan Ireland
Based on the memoir "One Who Walked Alone" Written by Novalyne Price of her affair with "Conan the Barbarian" creator Robert E. Howard
Stars: Vincent D'Onofrio, Renee Zellweger

Wild at Heart 1990
Director: David Lynch
Stars: Nicholas Cage, Laura Dern

Pee Wee's Big Adventure 1985
Director: Tim Burton
Stars: Paul Reuben

African Queen 1951
Director: John Huston
Stars: Katharine Hepburn, Humphrey Bogart

Eve's Bayou 1997
Director: Kasi Lemmons
Stars: Samuel L. Jackson, Lynn Whitfield

Benny and Joon 1993
Director: Jeremiah Chechik
Stars: Johnny Depp, Mary Stuart Masterson, Anthony Quinn

Box of Moonlight 1996
Director: Tom Di Cillo
Stars: John Tuturo, Sam Rockwell

Living In Oblivion 1995
Director: Tom Di Cillo
Stars: Steve Buscemi, Nick Reve

American Movie 1999
Director: Chris Smith
Stars: Mark Borchardt, Mark Shank

The Piano 1993
Director: Jane Campion
Stars: Holly Hunter, Harvey Keitel, Anna Paquin

The Big Lebowski 1998
Director: Ethan Coen
Stars: Jeff Bridges, Julianne Moore, John Goodman

Welcome to the Dollhouse 1996
Director: Todd Solondz
Stars: Heather Matarazzo

Smoke Signals 1998
Director: Chris Eyre
Stars: Adam Beach, Irene Bedard

Lucas 1986
Director: David Seltzer
Stars: Corey Haim, Winona Ryder

Rubin and Ed 1992
Director: Trent Harris
Stars: Crispin Glover

Foul Play 1978
Director: Colin Higgins
Stars: Chevy Chase, Goldie Hawn, Dudley Moore

Magnolia 1999
Director: Paul Thomas Anderson
Stars: Julianne Moore, Tom Cruise

The Glass Menagerie 1987
Director: Paul Newman
Stars: John Malkovich, Joanne Woodward

Evita 1996
Director: Alan Parker
Stars: Madonna, Antonio Banderas

Watership Down 1978 (animated)
Director: Martin Rosen
Stars: John Hurt, Richard Briers

The Secret Garden 1993
Director: Agnieszka Holland
Stars: Kate Maberly, Heydon Prowse
Based on the book by Frances Hodgson Burnett

Sweet and Lowdown 1999
Director: Woody Allen
Stars: Sean Penn, Samantha Morton

Mighty Aphrodite 1995
Director: Woody Allen
Stars: Helena Bonham Carter, Woody Allen

Zelig 1983
Director: Woody Allen
Stars: Woody Allen, Mia Farrow

Love and Death 1975
Director: Woody Allen
Stars: Diane Keaton, Harold Gould, Woody Allen

Celebrity 1998
Director: Woody Allen
Stars: Leonardo DiCaprio, Kenneth Branagh

Crimes and Misdemeanors 1989
Director: Woody Allen
Stars: Martin Landau, Anjelica Houston

Raising Arizona 1987
Director: Joel Coen
Stars: Nicholas Cage, Holly Hunter, John Goodman

Kids 1995
Director: Larry Clark
Stars: Chloe Sevigny, Leo Fitzpatrick

Basketball Diaries 1995
Director: Scott Kalvert
Stars: Leonardo Di Caprio, Mark Wahlberg

Superstar 1999
Director: Bruce Mc Culloch
Stars: Molly Shannon, Will Ferrell

Backbeat 1994
Director: Michael Carlin
Stars: Sheryl Lee, Stephen Dorff, Ian Hartt
About the 5th Beatle Stu Sutcliffe, love story and his tragic death

High Art 1998
Director: Lisa Cholodenko
Stars: Ally Sheedy, Bill Sage, David Thorton

White Palace 1990
Director: Luis Mandoki
Stars: Susan Sarandon, James Spader

Mrs. Parker and the Vicious Circle 1995
Director: Alan Rudolph
Stars: Jennifer Jason Leigh, Matthew Broderick
Portrait of writer Dorothy Parker from the famous Round Table

Twin Peaks: Fire Walk With Me 1992
Director: David Lynch
Stars: Sheryl Lee, Chris Isaak

Sleep With Me 1994
Director: Rory Kelly
Stars: Eric Stoltz, Annabella Sciorra

Dogfight 1991
Director: Nancy Savoca
Stars: Lili Taylor, River Phoenix

I Shot Andy Warhol 1996
Director: Mary Harron
Stars: Lili Taylor, Anna Thompson, Jared Harris
True story of Valerie Solanas

Polish Wedding 1998
Director: Theresa Connelly
Stars: Claire Danes, Gabriel Byrne

Like Water for Chocolate 1992
Director: Alfonso Arau
Stars: Marco Leonardi, Regina Torne
Based on the novel by Laura Esquivel

Grand Canyon 1991
Director: Lawrence Kasdan
Stars: Kevin Kline, Steve MArtin, Mary-Louise Parker

Swingers 1996
Director: Doug Liman
Stars: Vince Vaughn, Jon Favreau

Moonstruck 1987
Director: David Watkin
Stars: Cher, Nicholas Cage

The Waterdance 1992
Director: Neal Jimenez
Stars: Eric Stoltz, Helen Hunt, Wesley Snipes

The Hudsucker Proxy 1994
Director: Joel Coen
Stars: Tim Robbins, Jennifer Jason Leigh

Floundering 1994
Director: Peter Mc Carthy
Stars: James Le Gros, John Cusak, Steve Buscemi

Bottle Rocket 1996
Director: Wes Anderson
Stars: Luke Wilson, Owen Wilson, James Caan

Trust 1990
Director: Hal Hartley
Stars: Adrienne Shelly, Martin Donovan

Basquiat 1996
Director: Julian Schnabel
Stars: Jeffrey Wright
Story of famous artist Jean-Michel Basquiat.

Rushmore 1998
Director: Wes Anderson
Stars: Jason Schwartzman, Olivia Williams, Bill Murray

Dummy 2002
Director:
Stars: Adrien Brody, Milla Jovovich

Eternal Sunshine of the Spotless Mind 2004
Director: Michael Gondry
Stars: Jim Carrey, Kate Winslet, Mark Ruffalo

The Royal Tenenbaums 2001
Director: Wes Anderson
Stars: Danny Glover, Anjelica Huston, Bill Murray, Ben Stiller

Fight Club 2000
Director: David Fincher
Stars: Brad Pitt, Edward Norton

Slums of Beverly Hills 1998
Director: Tamara Jenkins
Stars: Alan Arkin, Marisa Tomei, Natasha Lyonne

Pumpkin 2002
Director: Adam Larson Broder
Stars: Cristina Ricci, Hank Harris

Big Fish 2003
Director: Tim Burton
Stars: Ewan Mc Gregor, Albert Finney, Jessica Lange

Secondhand Lions 2003
Director: Tim McCanlies
Stars: Michael Caine, Robert Duvall, Haley Joel Osment

Gangs of New York 2003
Director: Martin Scorsese
Stars: Leonardo DiCaprio, Daniel Day-Lewis, Cameron Diaz

American History X 2001
Director: Tony Kaye
Stars: Edward Norton, Edward Furlong

Secretary 2002
Director: Steven Shanberg
Stars: James Spader, Maggie Gyllenhaal

Mr. Jealousy 1998
Director: Noah Baumbach
Stars: Eric Stoltz, Annabella Sciorra

Harold & Kumar go to White Castle 2004
Director: Danny Leiner
Stars: John Cho, Kal Penn

Jay & Silent Bob Strike Back 2001
Director: Kevin Smith
Stars: Ben Affleck, Will Ferrell, Jason Lee, Jason Mewes

Waiting for Guffman 2001
Director: Christopher Guest
Stars: Christopher Guest, Parker Posey, Eugene Levy

Quills 2000
Director: Philip Kaufman
Stars: Geoffrey Rush, Kate Winslet, Joaquin Phoenix, Michael Cain

Frida 2002
Director: Julie Taymor
Stars: Salma Hayek, Alfred Molina, Ashley Judd

We Don't Live Here Anymore 2004
Director: John Curran
Stars: Mark Ruffalo, Laura Dern, Naomi Watts

Snatch 2000
Director: Guy Ritchie
Stars: Jason Statham, Brad Pitt

Bubba Ho-Tep 2002
Director: Don Coscarelli
Stars: Bruce Campbell, Ossie Davis

My Bestest Iowa Friend

Yesterday my mom called to tell me my friend Felicia from Iowa had called her house but did not leave a message. Ooops! I forgot to let Felicia that we only have our cell phones now. I called her right away and caught her before she left for work. It was great to catch up with her. We have vowed to write and call one another more often. When we were kids we lived pretty close to one another. Our parents were friends and we all used to get together for dinner and went to a cabin in Minnesota quite a few times together. I have always loved Felicia's parents Jim and Diane. I have fond memories of watching movies on HBO while Diane was painting her pretty toe nails and Jim would be telling us funny stories. Diane cut my hair as a kid. Once our mom's decided to give us matching Little Orphan Annie perms. Oh, my. I wish I had some pictures of us as kids to show here.

Felicia and I were best friends since birth! We went to catholic school together for a while in elementary school but then I switched to public in the third grade. She went straight through the catholic school until high school where we then went to Washington High together. Even when we were in different schools we made a point of seeing one another often. I would pack a bag and walk the mile or so to her house. Sometimes we would meet at St. Matthews for mass and then walk to one of our houses to play. We were always causing trouble in church. Old ladies made a point of reminding us to be quiet. Those were my best times in church! My junior year we moved to Indiana. We have done pretty good at keeping in touch all these years later. I would love to go visit her back in Iowa sometime.

Felicia is married to a nice guy, Greg. He is from Canada. On their way to Canada once they stopped in Fort Wayne to see us. Hopefully they can do that again some day. We had much more room back then in a larger house. Now, our house is so tiny that it is hard to have guests stay here. But, if they are up for it our cozy little house will make room. Having one bathroom will add those special challenges that memories are made of. Right?

Food...Food... and More Food

Today I woke up way earlier than normal. I know...I know...most people I know have to get up way earlier than I do. Hey! I paid my dues with a child that never slept through the night for eight years! So, when she sleeps in till eight...we sleep too. Nice. Okay, anyway...I got up at (drum roll please) 6:16 a.m. Whoa! It was not easy. But, I had somewhere fun to be so it was worth it. I was meeting my friend Holly for breakfast. Holly is our pastor's wife at church. We enjoy long chats at Bob Evan's every couple of weeks. I ordered two eggs over medium, home fries, whole wheat toast and downed three hot chocolates with whip cream. Yum. Holly is so supportive and positive. She is one of those women that just radiates love and a genuine desire to be there for you. I am trying to be more like her.

After my wonderful breakfast I came home to pick up Maizie for lunch with my mom. She had called the night before and invited us out to lunch. A wonderful surprise. We met at TGIF. Maizie enjoyed her usual meal wherever we go, chicken nuggets, french fries, Sprite and ba ba sauce. My mom had a half order of potato skins that looked like a full order. I had some chicken parmesan on pasta meal that was tasty and a few too many diet sodas. Visiting with mom and Maizie was fun. This is the second time I have been to the mall since we moved back from Jersey. The last time was going to Sears looking for pans. I have not actually been into the mall part yet. I hear they have a carousel now. I certainly want to see that one of these days. Thanks for lunch mom! Maizie and I had a nice time.

After lunch Maizie and I went to The Lakeside Learning Garden. I was going out on a limb doing one activity after the next with Maizie. She was seeming pretty tired by the time we got to The Learning Garden. Cindy was there playing her guitar and fun sing along songs for the kids. Maizie participated a bit more today. She is feeling comfortable with the music now. The first time she was afraid the music would be loud or that she would get in trouble if she did not sing along. No pressure to perform which is good. After music she played barbies with Onika. Angie, the store owner asked how homeschooling was going. I really appreciated her encouragement today. Her store has been a great help for us as we begin our homeschooling journey. I bought a few new workbooks for Maizie that I think she will love.

In the car on the way home Maizie told me she was mad at me because I made her walk too much today. Complained her legs hurt. She made me promise we would stay home all day Friday. Now, I bet you anything she will beg me to take her somewhere first thing tomorrow morning. Anyway, tomorrow I am swapping child care with my friend Susie. Susie shops for two and a half hours while I watch Chloe and then I go to Saint Francis to meet with my advisor while she watches Maizie. Hopefully my advisor appointment will be less than fifteen minutes and I can enjoy the rest of my time doing....I have no idea what. Walking my meals off, maybe. This childcare switcharoo worked out pretty good last time. Maizie should be in heaven getting to play non stop Barbies with Chloe who is equally addicted.

Enough about tomorrow. I need to tell you where I went tonight. I met my longest bestest friend Mindy for din din at Casa's. Mindy and I go way back. When I lived in Jersey we had lunch together almost daily via cell phone. Mindy is one of those friends I can tell anything to and she still thinks I am cool. At Casa's she ordered fried calamari. Eeeeeewwww. The texture of lil' octopus legs is just too much for me. I ate a small salad and toasted ravioli. The same meal I have ordered at Casa's since I was in high school. That is just darn sad. I know. I should branch out and try new things. I can't help it. It always sounds perfect and I have yet to be disappointed with that meal.

So...that was three meals in restaurants today. How many calories did I consume? Way too many. Did I mention the left over bagel I had from Panera in between lunch and dinner...a chocolate chip one! After dinner I came right home and walked Darwin. A fast brisk walk before it got too dark and scary out. Darwin was trotting along like a little gazelle he was so happy to be out walking in the warmer air. I can not wait for Spring when I can get back to my speed walks.

Alice In Wonderland

Today we went to The Firehouse Theatre to see Alice In Wonderland. This neighborhood theatre put on a pretty enchanting show. Maizie loved the Queen of Heart's costume. When the play was on the last scene Maizie whispered to me, "Make them start it all over from the beginning...now." High praise. I am sure we will be returning to The Firehouse Theatre.

Apparently the Firehouse is struggling to stay afloat. When we were there it looked like they had a full house. I hope more people take advantage of this community theatre. There is a lot for children to learn through attending plays or acting in one. All great cities have community theatres such as this. We should cherish this gem and support it.

Maizie's Sleepover

Maizie's cousin Christian spent the night tonight. They played barbies, UNO, computer games and danced to Barbie's Mix. Maizie decided to do some Pilate's while Christian played a computer game. Darwin always has to be where the action is. Dinner was plain pasta and mandarin oranges. The after dinner treat was a Cadbury Creme Egg.

Time for bed! Maizie and Christian cuddle into bed early to watch the move Robots. Ooops. I think they fell right to sleep. I hope they don't wake up too early in the morning.

Battle of the Sexes

Last night we walked over to Beth and Mike's for a yummy din din and a ruthless game of Battle of the Sexes. I must say that Beth and I worked well together. She knew most of the answers and I verified whether they were right with my gut reaction. We really struggled with the sports questions. The guys lucked out by drawing a card that sent one of their pawns all the way to the end of the game! They were soooooo lucky!

Now we all know what a panama is. I can't wait to show off my new knowledge of various forms of fancy clothing.

Tonight Joe is going to play the game HeroScape at Mike's. Maizie, me and lil' Christian will be hanging out at home. We took Maizie and Christian to Jefferson Point today for a yummy Enzo's lunch and lots of running play at the kids area. Enzo's is the closest we can find to our favorite Jersey pizza at Bachagaloop's. I love east coast pizza. Joe's pizza is good too.

Falcon

I was sitting in my car out back when a large falcon flew towards my window and then landed in a tree in front of me. It was gorgeous. It really made my day.

Dinner Out

I am looking forward to getting out tonight! My good friend Mindy and I are meeting for food and gab. I can't wait. Maizie is sleeping again and I need to be doing homework. Blogs make procrastination easy for getting homework done.

Phone Call Roller Coaster

We are still going to the Cleveland Clinic and looking forward to this appointment. However, I have to share the roller coaster ride of phone calls I experienced yesterday afternoon.

I was running errands alone while Maizie was with her Aunt Marie. This was to be fun time for me. It did not work out so well. The nurse from Maizie's neurologist office in Indianapolis called. I was expecting this call but did not expect what she was going to say.

The nurse laughs a bit and then says,"Dr. was looking over Maizie's lab results and was surprised to see that her psychiatrist has read most of the results wrong. The results are actually quite normal and there is not much to worry about that a visit with her pediatrician could not take care of."

My response, "Are you kidding me?!"

She explains to me how the psychiatrist had lined up each lab result with the wrong reference range. The actual results that are out of range are highlighted. On the sheet it looks like three black lines across the page. But, if you look really close you can see the name of the test and the number in the out of range column. I am sad to admit I did not notice these highlighted tests.

The tests the psychiatrist was concerned with were not out of range and did not even show up in the out of range column. There are a few towards the end of the report that are easily read as out of range but the first page was a mess of misunderstanding. As psychiatrist read it her Glutamate was 80, reference range was 1-24. When read accurately her range was 80 and the reference range is 5-150. So, she fell well within the normal range on that test. There were several others read wrong like that. The three tests on the first sheet that were out of range were Phosphoserine, Serine and Beta-Alanine. I was eager to get home and look into what these amino acids were all about. Granted, until she is retested by an expert I am taking everything with a grain of salt.

Now, when we first got these results I remember looking at them with the doctor and thinking they were not lining up correctly. But, I pushed that initial gut reaction down and said nothing. I assumed he knew what he was doing. Argh!

I begin to feel my face flushing and I start sweating profusely while talking to this nurse. I feel anger and frustration bubbling at the surface. I know I will either begin to cry or spontaneously combust. Neither happens.

I hold myself together and tell the nurse about the research we did and our plan to see the specialist in Ohio. I am at a loss as to what to think and am filled with doubt and disappointment. This was the first time we had tests that showed anything that may lead to an answer and most importantly an answer that may lead to helping Maizie. Now, I was being told the tests were fine. I could not believe it.

The neurologist's nurse will call me back later this week in regards to Dr.'s opinion on seeing the specialist and the answers about a few of the testings that the neurologist could not make sense of. Oh, and she was going to call Lutheran Hospital because one of the labs showed that it was done via Spinal Tap. Maizie has never had a spinal tap. What the hell?

Once I hang up I speed dial the clinic in Ohio. I knew I put all these numbers in my phone for a reason. I tell the nurse what the neurologist said about how the psychiatrist misread the lab results. Should we keep the appointment with the specialist? She says she will show the Dr. the labs and the other history reports I sent. I hang up expecting days of me calling and begging for some answers. Two minutes later I get a phone call from this nurse! Yes! God is working with me here, I could just feel it. She had shown the doctor everything. He reviewed it and said Maizie should definitely be seen because the highlighted tests that were abnormal could definitely point to something. Not to mention her history of developmental delays, sleeping difficulties and seizures. I thank her and keep the appointment.

Suddenly, I feel relieved and at peace with the world! It is totally strange how you can go from being devastated by some test results, to feeling hope and relief that the findings could lead to a better life for your child Then on to devastation that the results were within normal ranges and everything appears to be fine. I start to think I could live with that but would always worry that none of these doctors knew what they heck they were doing. Then, I go back to relief that the expert still wants to see her and is convinced he can help her.

I have experienced these roller coasters of emotions before. They are exhausting and linger for days. I will wake up at night running the results or current medications through my mind. Worry that we are wasting our time and money or putting Maizie through unnecessary testing. The thing that makes me feel confident with the Ohio clinic is everything will involve blood, urine and genetic testing. Those results...when done and read correctly reveal truths that will lead to a definite diagnosis. This is what we tell ourselves.

As I write this the psychiatrist FINALLY calls me back. It has been nine days since I first called. I explained the misread on the labs to the nurse and she was stunned. She did apologize. It is no use for me to get angry at the staff. I am angry, frustrated and fed up but I learned early on that letting out these emotions to staff or doctors in an unprofessional way gets us nowhere. I act professional and factual. The doctor made a mistake and it does make me angry and doubtful of his skills but he is one of the few that has shown any effort in getting to the root of Maizie's difficulties. I am sure he will be embarrassed when he sees where he messed up.

Ah, the joys of advocating for Maizie's medical care. I am thankful that I deleted advocating with the public school system from our lives. If I was continuing to struggle with the school and medical I would eventually crack up. Our lives have been somewhat simplified.

However, finding time to get out on my own can be a challenge. Today I was leaving to run to the library, GNC and Walgreens. It could be done fast and I figured Maizie would not bother Joe for a short hour. A few minutes into the trip I get a text from Joe that Maizie is 'screaming' and to come right home. This hardly ever happens anymore. When Maizie was younger our days were filled with these long screaming, almost seizure like melt downs. I slowly open the door to the house and sure enough Maizie is sitting in the computer desk chair screaming and crying.

Joe is in the basement trying to finish a conference call. It helps to know what set her off. When I left the house Maizie was playing the computer and was having a difficult time advancing through a part where a kitten has to catch some flowers. I am pretty certain that not being able to accomplish this task sent her over the edge, me leaving may have been a catalyst for the melt down also. It is usually more complicated than just a game upsetting her. Usually, these meltdowns occur with a build up of frustrations or her working very hard to keep herself put together around others. It is rare that Maizie would have a melt down in places other than our home. Of course it has happened, but its not common for her.

Maizie sees me and runs to a corner in the living room crying and trying to hide herself from me. I know immediately that this is one of those times where talking her out of it won't work. I get her the medication that will help her settle. Without it we are looking at a long bout of emotional acting out followed by a depressive state where she cannot stop crying. We have tried getting through these times without the medication and things only get worse. She willingly takes the medication and within minutes she sits on the couch and is able to talk. At that moment she is unable to tell me what made her so upset. She soon falls asleep. Now that she is awake I ask her what had made her so upset. At first she says she does not know. Then, a few minutes later she says she could not get the flower on the game. We both agree that she is not allowed to play the computer the rest of the day.

Discipline is always a challenge when she is unable to cope. Ever since she began having problems at the age of 18 months we decided to treat her as if she knew what she was doing and discipline accordingly. This was sometimes torture for her and us. But, it was always difficult to tell what was within her control and what was not. Lots of kids have melt downs and cry about things. But, with Maizie the crying would lead to intense depression, insomnia or obsessive compulsive like behavior. Even still we wanted Maizie to know that she needed to come up with ways to deal with her low ability to handle sensory stimuli and transitions.

Sometimes we know that we are to blame for a low tolerance level. For instance if I take her on too many errands or to a crowded place with lots of noise. She can't handle much stimuli and we always say,"we all pay a price for pushing her limits". Every day is a constant balancing act of activities. This is something most parents of high functioning autistic children have to learn to handle. Most importantly, we have to continue to come up with ways for Maizie to communicate her needs before the melt down occurs. We still have not figured this out to my liking.

I am anxious to see if this testing shows anything helpful. A lot of the metabolic disorders have similar symptoms to autism, epilepsy and often times they are interrelated. If we could do something with supplements and diet to help I will be thrilled. We have tried many diets in the past but this would be specific for the disorder. Hopefully it would not be as challenging as the diet for children who have PKU. But, whatever it is we could do it.