Progress

I talked with a nurse at the University of California San Diego Pediatrics about Maizie's tests and she spoke highly of The Cleveland Clinic Foundation of Ohio. They have a division of pediatric neurology that specializes in child neurology, neurometabolism, neurogenetics and mitochondrial disease. We scheduled an appointment. There are two days of appointments and testing so we will be going on a road trip!

I feel relieved that we have someone to test and sort things out. Joe has done a lot of work at this University so he is familiar with the area and says there is a really nice hotel downtown. I am sure we will find some fun.

Ohio wanted me to fax her records to them so I gathered her testing and reports from St.Joseph's Hospital Department of Neurology in New Jersey. I also sent her recent Occupational Therapy testing. It did not seem like enough. I was surprised to see how little testing we actually have. We have various doctors' letters stating what they believe her diagnosis is...three neurologists, neuropsychologist, four psychiatrists and two sets of school testing. From all of these we know practically nothing and gained most progress from her New Jersey doctors.

I don't know if it was progress related to doctors as much as it was Maizie being at her healthiest. For so long we went from illness to illness. Pneumonia, respiratory infections, allergy testings, hospitalizations from asthma...all mixed in with severe insomnia and behavioral difficulties. To call what she went through a 'behavioral difficulty' is not an accurate description. Maizie was literally inconsolable and on an emotional roller coaster for the first five years of her life. We learned how to grasp the good days, the times when she could focus and enjoy herself. I am so glad I took hundreds of photos to share all of these happy times with Maizie and remind myself of all our blessings.

Joe and I think through home schooling Maizie is making up for lost time. Her ability to play more at age level right now is amazing. We are seeing huge improvements through reduced stress.

Maizie has had MRI's, EEG's and a Sleep Study and none of those testings showed anything. Most were inconclusive due to inaccuracies in testing. For the EEG they wanted Maizie asleep and did not believe me when I said she would be very difficult to get to sleep. The amount of medications they gave her put her into too deep of a sleep making the results pretty worthless. The sleep study just showed that Maizie would not go to sleep and woke up quickly after falling asleep. For a child with autism and high anxiety sleeping for a sleep study was a joke. I regret agreeing to that test. God willing, the testing that will be done will focus on blood and urine. Quick and easy.

The nurse in California warned me that testing and diagnosing is a long process. It can't be any longer than the list of inaccurate diagnosis's we have acquired over Maizie's nine years. I feel encouraged that we are moving in the right direction for answers. I am praying that there will be a diagnosis or an absolute 'no' for genetic or metabolic disorders that may be causing brain damage.

Road Trip & Test Results

We just returned from a trip to visit my younger sister Melissa in New Albany, IN. Her toddler Alex was a cutie. Joe, Maizie and me went with Melissa and Alex to Build A Bear and Maizie made a pink cat. Alex got a baby kitty and enjoyed watching Maizie go through the Build A Bear process.
The weather felt warm compared to Fort Wayne. On the day we babysat Alex we were able to go to a park. Maizie and Alex ran around, enjoyed the swings and we saw lots of geese and ducks. Best of all, we had Zestos! Talk about making us hungry for Spring! Yummy!

The trip was overshadowed with some test results we had in regards to Maizie's health. Her doctor had run some blood tests that revealed some abnormal levels that may reveal a Metabolic Disorder. Possibly this news is a blessing and we will be able to help Maizie attain better health.

Finding help is turning out to be the next challenge. Her doctor did not know what to do about the test results and says he is researching a specialist for us to go to. I want to give him the benefit of the doubt and assume he is carefully looking into where we should go. I am growing impatient waiting for his response. He says what we are looking at is very rare and so it will be difficult to get help. I suppose this battle is once again, the first of many. There are always the lovely insurance company battles to look forward to.

My sister's father in law is a physician and was able to research some articles for us. He said we should research and learn about inherited metabolic disorders and take an active approach to getting help. Joe and I did a lot of research using her test results and came across a hospital in California that specializes in pediatric inherited metabolic disorders. Most of the other places only had services to assist children that had all ready been diagnosed with PKU syndrome or a few other well known syndromes. Since we are needing a definite diagnosis we need to find a place that knows what to test for. There may be some genetic testing involved, but once again, we need a doctor who knows what to look for.

This could be a piece to the puzzle we have been looking for. Maizie's seizures have been fewer but these tests may point to a higher incidence of non visible small seizures taking place. I was so shocked at these results since she has been doing better than ever. A few of the test findings are said to be common in children with autism. Due to the results Maizie's doctor had her go back up on the medication we were trying to wean her off of. It is more than likely working to try and protect her brain from the probable damage taking place. Whatever we are looking at it seems linked to her developmental delays and 'seizures'. Until we get a diagnosis the doctor does not want us to change her diet or anything. He thinks we are pretty lucky she is doing so well and encourages us to keep doing what we are doing.

I did get her an appointment with her neurologist in Indianapolis. It is unlikely that he will have the answers we need but until we can get her into a specialist the doctor thought it would be an okay idea for the neurologist to see her again.

Ironically, on the way to my sister's Maizie had a seizure for the first time in two months. I had just hung up the phone with a friend and mentioned it had been a few months since she had one, we pulled over for gas and within seconds the seizure happened. It was mild and Maizie was fine afterwards.

Joe and I are both struggling with mixed emotions and are frustrated that it has taken us so long to get Maizie a definite diagnosis and help. We want to have the tests ran again and have doubts in regards to accuracy. When no one can explain them very well that certainly creates doubt and confusion.

We appreciate every one's prayers and support throughout what has been a long journey through several different diagnosis's and rough times. As we all know with rough times and challenges comes much joy and blessings. We have a lot to be thankful for.

I debated if I should blog about these health issues. I wish all of my posts could be happy and fun but that just is not the way it is. Having a sense of 'normalcy' is important to us. But, at the same time our challenges in helping Maizie are so much a part of our daily lives that omitting all of the details would feel strange. I have decided to share bits and pieces.

On top of all of this I have been working on my work for my sociology class. I finished the work due for today and have a paper due Wednesday. I am really struggling with fears of not being able to finish school. I need to not worry about it. I just went back to school this last Fall. I had went back when Maizie was three and within weeks she was doing so poorly and had to be hospitalized. I managed to finish the classes but was unable to return until recently.

I had vowed I would not return until Maizie was doing well enough that I could handle the extra stress. Luckily, I have forced myself to only enroll in one class each semester. But, with her needs, homeschooling and my own life it feels like a lot. I really want to finish my degree so I am going to hang in there. I envision feeling very happy and relieved that my degree will add to my ability to find a rewarding job when I am eventually able to work. I have had to accept that I can't be involved in the extras that university art school has to offer right now. That has been hard to accept. When I want to do something I want to do it all. I have to remind myself that my most important priorities lie elsewhere right now.

Happy Belated Valentine's Day!

With Joe in New Hampshire and the piles of snow that made it difficult to go anywhere for a few days Valentine's Day really did not feel like Valentine's Day at all. Not that it is ever a really big holiday for us. But, we do like to give Maizie a few little goodies. Once the car was shoveled out Maizie and I headed to Barnes and Nobles where she was to pick out just one thing for Valentine's Day. Well, that did not work out so well since I saw a few books I thought she would like. From there we went out for Chinese. Maizie's favorite. Maizie and I had a great time sharing pineapple chicken and reading her new book on the world of fairies.

Valentine's Day night I was determined to finish my homework for my sociology class. It took me f o r e v e r. I was so frustrated. I was not even watching T.V. while I worked on it. The two chapters felt like they would never end. The questions I had to answer were tedious and boring. I had to motivate myself with treats. This is a method I have always used and as embarrassing as it is, it works quite nicely. I line up some of my favorite candies. M&M's work best but I prefer red Swedish Fish. After finishing each question or page of reading I eat a piece of candy. Stopping to enjoy it and look forward to the next. Finally, at one in the morning I finished the reading assignment. So, how many candies does it take to finish an assignment such as this...too many! I was determined not to wake up the next day with more of that assignment to complete. However, I still had to post my reflection on the reading and respond to other classmates posts. Argh. This online class is really much more time consuming than listening to lectures. But, it keeps me home where it is warm.

Maizie and I went to the Learning Garden on Thursday to celebrate Valentine's Day with the kids. They made cute bags to put all the treats and cards in. Maizie handed out suckers and little playdoh Valentines. They have the coolest stuff for holidays now. Angie read stories to the kids.

The homeschooling parents meeting was after the party. Truthfully, I had forgotten all about it. There is something about this meeting that makes all the kids get loud and wild. I am sure it is obvious to the kids that we are trying to talk as adults and so it is time to be noisy. I could see Maizie hunkering down in the far corner glancing at me every now and then. Suddenly, I felt panicky and knew we had to leave as soon as possible. The noise and quantity of the people in the small space stresses her out. Maizie came over to me and said, "Can I borrow this barbie dress". Ooops. A big red flag that a melt down was within minutes of happening. I jump up and take Maizie to the back door. I felt terrible I was only able to say goodbye to Beth. Time is of the essence when a melt down is nearing.

On the way home from the party I called the insurance company to see why her medication was being denied at the pharmacy. After that went nowhere I had to call her Dr. and see if they had samples until the situation was worked out. We were down to half a pill. I was getting nervous. The Dr.'s office said they had no samples so we headed home. Right as we get to our street my cell phone rings and it is the Dr.'s office saying to come get the samples right away before they close. I turn the car around and drive all the way out north to get the pills.

I call Joe and ask him to try calling the insurance company. Men always have better luck with these calls. Sure enough, he managed to get a reason for the lack of coverage. Suddenly, after a year of Maizie being on this medication and it successfully treating her, they decide she is only allowed three of the pills daily. Never mind that she has had a positive response from the five prescribed.

We are in the process of weaning her off this medication to see if she can handle a lower dose now that her seizures are under control. But, we can't just jump way down cold turkey. The insurance company insists that Joe needs to request a letter of medical necessity for the prescription as it is written. Okay...so a Dr. writing a script and requesting a certain amount of medication is not proof enough? Amazingly ridiculous. Granted, this is nothing new from our insurance company. Every time it happens I become upset, anxious and angry. I have faith it will work out and it always does. But, the long waits on the phone and trying to get people to help us solve the problem sends me over the edge.

Poor Maizie is in the back seat listening to all of these phone calls. She should not have to hear these conversations. It makes her nervous and she begins to wonder about her medications. I tried to calm her knowing she would no doubt melt down once we were home.

Sure enough, after returning from the long drive and the annoyingly long visit to the Dr.'s office she began to unravel. Suddenly, she says, "I can't take it anymore!" She tells me she hates me and wants to go live in her room forever. She says the party was not fun at The Learning Garden and she misses her old school. Okay, this is where overwhelming guilt creeps in and begins to take me over. What if I have made a terrible mistake in homeschooling? I picture myself going back to the school and begging for her to be immediately enrolled. Maizie is sobbing and repeating that she misses her teachers and friends. I know she had a good time at the party. The problem is her senses are on overload. I need to help her through this and not worry about choices at the moment.

In the car I had given her the three o'clock medications. She had a difficult time swallowing them and she was forced to spit them into her hand, a big nasty pile of wet disintegrated pills. I wanted to cry. Now, her last dose never even made it into her system. It was a good things the Dr.'s office managed to find one pack of sample medications.

So, I remind myself that Maizie has been without her medication and immediately gave her the meds. Within minutes she begins to calm and tells me she loves me and that homeschooling is good. We agree to go hang out in her room, watch a movie and write in her blog.

Today, it is Friday. The Dr.'s office called and they have Maizie's medication figured out, called in a new script and wrote the letter of medical necessity. Yeah! Enough of that worry.

Blizzard Bliss

I can't help it. I really love days like this. I try not to get too excited when I hear that snow is on its way. Whenever I do...it never happens. But, yesterday I decided to get excited. We have all the food, toilet paper and Diet Pepsi we need. The house is cozy and warm. Most importantly, I got all the dog poo picked up in the yard yesterday. All cleaned up for a fresh coat of sparkly snow.

Joe is in New Hampshire. I wish he was here to be all warm in our tiny house together. Joe prefers a cave feel to our bedroom. The blinds have to be closed in just the right way. Carefully, he arranges the curtains so not even a flicker of light is allowed in. Since I was on my own last night I was able to do the unthinkable and sleep with the blinds open! Yes, it is a wild life that I live. I can wake up and keep an eye out for the snow to start.

I must say I was a bit worried the snow would never come. But, by about four a light dusting began. Would it be enough to cancel schools? Now that we home school...why should I even care? Ah, but I do. It is an obsession of a sort. Brings back memories of the joy snow days brought into my life, simply because I did not have to go to school. I began to think that there would not be enough snow by morning for schools to be cancelled. Luckily, some people have enough faith in the weather man that almost everything was cancelled for the day. Now, instead of a winter storm warning it is a blizzard warning. Yes!

Staying in on days like this is the best. The pressure to get out and accomplish things lessens. Maizie and I are still in our pajamas. Heck, we may be in our pajamas all day long. Unless we go out to play in the snow. Which I seriously doubt. I like to look at it, not play in it. Maizie may have different ideas. It is pretty darn windy out there though. I think I will entice her with warm pumpkin bread and cuddling while we watch silly movies all day. I love this blizzardy day!

Just as the pumpkin bread came out of the oven my friend Janeen called. Maizie and I bundled up and walked on over to their house to play. Being the lazy day that it is Maizie stayed in her pajamas. Once to Janeen's we shared warm pumpkin bread. The girls had fun playing. On the walk back the wind was pretty wicked.

I tried to shovel a walkway to the front and side door but did not get very far before giving up. The snow keeps blowing and my back can't take it. So, now we are back inside. Maizie is up in her room playing and here I sit. Nice. Very nice.

It would be perfect if Joe was here too. I realized that we will not be together for Valentine's Day and that really sucks. The last two Valentine's Days we were moving. The first time to new Jersey and then back here again. It feels really good to know I won't be moving this year or any time soon.

Alexandra! Happy Birthday Christian!

We were so happy to visit with my sister Melissa and her baby Alexandra. Baby Alex is signing and saying lots of animal sounds. Her favorite is barking like her dog Cooper. Too cute!
Happy Fourth Birthday Christian! Christian loved his Curious George birthday cake. Christian loved the stuffed puppy his mom Marie gave him. Christian named him Four.

My Peculiar Aristocratic Title is: Venerable Lady Marla the Vehement of Goosnargh on the Carpet Get your Peculiar Aristocratic Title

Deschooling and Home Learning

Homeschooling books talk about the importance of deschooling. They say it takes one month for every year of traditional schooling to deschool. I don't want Maizie to regress so we are doing home learning whenever and wherever it seems to happen.

I am not using any curriculum yet. I have a few things ordered. Even with the curriculum we will be doing the less structured form of learning during the deschooling process. We will not recreate a school like environment here. It will be important for Maizie to experience a sense of creative freedom. She needs to feel comfortable making her own decisions and trust her abilities.

My main concern was helping my social butterfly make some new friends. At school Maizie loved helping and bonding with the children in her special needs classroom. The first couple of weeks she cried wanting to return to school. I had to assure her that we had made the best decision, to trust us that homeschooling would bring less anxiety, more fun and strengthen her skills and ability to learn. We have begun getting together with some children nearby that home school and going to The Learning Garden here in town when we can. Playing with cousin Christian and other friends is always fun too. We visit the libraries in town weekly. Maizie loves to read.

On Wednesdays I have bible study and Maizie gets to help out in the nursery. She really likes to help care for the babies and toddlers.

My biggest fear regarding homeschooling was the dreaded issue of socialization. When people ask about it my husband Joe says, "Don't worry we are in the process of hiring some bullies to come over and properly socialize her." The school socialization she was experiencing was not terrible but it was too much of an overload for her.

Maizie is a singleton so I have the extra pressure of making sure we don't become hermits. Well, I don't know what I was worried about since it seems we could be on the go...socializing...all the time. Maizie requires lots of quiet time to relax and play. When she was in public school there was no time for this. She has come to appreciate playing quietly alone in her room. I hear her speaking and role playing in new creative ways. I am thrilled with this!

Learning continues through review of known skills and creating positive learning activities through play and experiences. Journaling in a blank book has become a favorite for Maizie. We are building self esteem, verbal skills (focusing on describing and having confidence to share thoughts), learning to play alone and discovering her limit for daily activities.

I studied the method of Charlotte Mason and applied some of her ideas. It seems we will follow a more eclectic form of homeschooling. Maizie requires diverse ways to learn material. It is great to have this freedom. Deschooling is strange and difficult. I really want to push her to produce work and make detailed lesson plans. But, I know this would not be a benefit. We will wait and just 'be' for a while. This is hard for me.

The biggest benefit is that Maizie can sleep in as late as she needs. Maizie has always had difficulties sleeping. When in school her anxiety was so severe that she would often awake for hours in the middle of the night. Since starting homeschooling she has only had insomnia once. I strongly believe that by letting her have more control over her sensitivity issues she will increase her ability to handle experiences that are over stimulating for her. With the sleep she needs and extra quiet time she has been handling social situations with a renewed sense of calm and happiness. We still have struggles with transitions but nothing like before. The other bonus here is that we get to sleep too! After almost nine years of never sleeping through the night we deserve it!

It is also a relief to me that with sleep and less stress there will be fewer seizures. Maizie has struggled for so much of her childhood to be healthy. Due to her seizures not being diagnosed until she was six, her intolerance to stimuli, emotional and communication issues Maizie was further delayed developmentally. What a blessing to be able to take this time to enjoy being a child and fall in love with learning. Best of all, we are enjoying spending more time with Maizie.

Remembering Warm Days

It is sooooo cold out! Maizie was going a bit stir crazy so we packed up, picked up a little friend and went to an indoor play area. Lots of wild fun was had, followed by a tasty lunch. Now we are at home and cozy while watching the anticipated Cinderella Three, A Twist In Time.

I feel cold air blowing in everywhere. Our bathroom window is a solid sheet of ice. I am really wanting warm weather. A few days ago Maizie said, "I can't take it! I am breaking in two. I want winter to go away."

Wanting the warm days of summer brought back memories of our summer vacation last year to Canada. We enjoyed fishing even though we never caught a thing. On the way home we went to Mackinac Island in Michigan. We played on the beach and visited a butterfly house. Darwin loved the beach. I will include some pics from the warmer days.

Maizie's Drawing of Herself as a Baby

A First Post

I kinda wish I would have begun blogging years ago. I can only imagine the ongoing saga the last several years would have been. I have always kept journals. Lots and lots of them. I always wonder if I should destroy them but can never bring myself to do it. This is the modern way to journal. I had better get with the times.

I was inspired to blog by a new friend, Beth. I love her blog. It shows such creativity and allows me to see the blessings within her family.

I will start with a brief history. I was born in Iowa and moved to Indiana when I was 16 years old. I have a loving family and feel fortunate to have created my own wonderful family of three. I married Joe in 1994 and we adopted our daughter in 1997. Nothing for us has been easy. We went through four years of infertility before deciding to adopt a baby locally. One of the best decisions we have ever made. Yet, one that posed more challenges than we could have ever imagined.

Our adoption was a difficult one to say the least. Maybe I will share bits of that story another time. Or I am thinking of digging out my old journal entries from back then and sharing bits of those. Maizie was diagnosed as being high functioning Autistic with seizures when she was seven years old. She is so strong, intelligent and has a spiritual depth to her that never ceases to amaze me.

About four weeks ago we made the tough decision to withdraw Maizie from public school and begin homeschooling her. Joe and I had researched and discussed this option for a few years but really did not see it being necessary until the difficult teen years. Dealing with the social and academic stresses of school was too much for Maizie. Too much of our days were spent destressing from school. As a family we felt like school was taking over our lives in a not too nice way. So, we took the leap and I do regret not starting years ago.