My Life Reinvented

Where do I begin after such a long and intense Bloggy Break? Many of you have been keeping up with me on Facebook. If you have not I will remind you that my divorce will soon be final. Maizie continues to talk to her Dad and will be visiting him. That is all I will say about that here.I certainly have appreciated all of the ongoing support. Making the decision to blog again has been difficult. My blogging friends understand how time consuming blogging can be. Not to mention when major life changes are happening one is a bit hesitant to share those with everyone.
After receiving many requests from friends and family I have decided to give my blog another go. I hope that my readers are happy with my return and will stick with me while I get back in the swing of things. Learning to balance Maizie, additional children,family, friends, a partner who is in the military, blogging and my art is going to be a challenge.

I imagine many of you are wondering what the heck has been going on. Where did me and Maizie disappear to?

It is amazing to me how one seemingly tragic change can open up a whole new world that would have never been imagined before. I began communicating with Chris and we fell for one another. How do I express here how in love with Chris I am? There are no words for it. We make a great team and our time together is fun and easy. I began visiting Chris in Iowa and he and his girls came to see us in Indiana. I won't go into all of the details of why it was best for us to make the move to Iowa. There were many factors involved in that decision. I am thankful for my friends and family that helped me move in literally....one day. So much work! Maizie and me love being here with Chris and his three girls. Chris shares joint custody of his beautiful daughters.
I know! Major changes. Maizie and me went from being on our own to sharing a home with a four, seven and nine year old. Darwin and the guinea pigs love all the extra attention! My blog will begin where I am now, where I am happy to be. You all know I am not one to dwell on the past and change does not scare me. I've moved on and we are all the better for it.

Maizie spent one week in the University of Iowa Children's Hospital for pneumonia, increased CVS and seizures. That was by far the scariest hospitalization Maizie has ever had. Chris and I were witness to a new type of seizure during that illness and it was by far the scariest I have ever seen. We were very concerned that she was not going to pull through. The pneumonia was very stubborn. I am happy to say that Maizie is feeling good and has her appetite back. She had lost so much weight that we were forcing Ensure on her every chance we could.

While at the hospital Maizie had excellent care. We were hooked up with top physicians who are going to continue caring for her. I was not looked at like a crazy mother when I told them about her Cyclical Vomiting Syndrome, Chromosome Disorder, Seizure Disorder and Autism. Not one doctor said, "Now....what does that all mean exactly?" No one looked at me like I was nuts when I told them the medications she was on in order to stay healthy. What a breath of fresh air that was! Those of you out there with children like Maizie know what I am talking about. They understood how complicated her diagnosis is and I was beyond relieved.

As you see my header is now, Marla On All That is Dazlious. My last name will soon change back to my maiden name. However, I do not want to move to a new blog address at this time so you will continue to find me here. I have much to share and look forward to catching up with you all soon.

Thoughts on Labeling

When Maizie was a baby and we knew she was not feeling well I remember thinking, "If we just knew what it was. A name. If we had the name of it everything will fall into place. There will be answers. There will be things we can do, things to change, ways to make everything better."

Once we had a "label" I always felt hopeful. I knew that information was power and with it I felt powerful. Over time the first label was not fitting, and then the second, the third, the fourth, etc.

With each label I read books, I studied, I taught others, I interviewed doctors and professionals, I looked for the best help we could find.

Each time...nothing changed. What was I expecting to change? Did I want Maizie to be "normal"? Sure we had medications to try, therapies and behavioral strategies. What exactly was it we were looking for? We were searching for answers to help Maizie feel better. That much I knew for sure. I wanted her to be able to play, to speak, to answer questions, to laugh and run and play. Making it through a day without being in pain was certainly something I wanted for her. I wanted her to have a childhood like I had.

Whatever label we had did grant us a certain power of sorts. It led us to a certain doctor who would in turn give us ideas or medications to help Maizie. Some of the medications helped and some did not. At times there were the doctors who knew nothing, who caused more trauma and damage than I could have foreseen.

All of this I never wanted to put Maizie through. I never wanted to put Joe and me through it. But, it was that way. I can't see it going any differently. The searching, the sleepless nights, watching Maizie in pain physically and emotionally for hours...for days. How can a parent watch that and not search? It is impossible.

And yet. When it gets right down to it...Maizie is just Maizie. She can not be categorized. One can not say, "See! She is just like this child here or that one there. Do what we did for this child and it will help her exactly the same!" Like everyone else in this world Maizie is her own person despite her diagnosis. What works for one child or adult may not work for another.

Maizie's medications don't change who she is. They are not some miracle potion that make her find her words, stop her anxiety, insomnia, migraines and inability to withstand certain noises or situations go away. Her medications are a tool. A tool that must be researched, reexamined and thoroughly evaluated on an ongoing basis.

Maizie is not her medication. She is simply Maizie. A child who is simply that. A child.

I continue to question the labels we use. She needed a label in order to get schooling where she is taught using alternative methods. Labels that determine the correct medications to treat her pain are very important. A label was necessary for her to get proper care in the hospital when the nurses insisted she could withstand having a roommate when it was beyond clear that she could not. I could go on and on. Our lives revolve around these labels. I have fought for these labels and I fight for others to see beyond them.

We rely on labels to move forward. And yet every day I am with Maizie it becomes more clear to me that yes, we rely on these words, these categorizations for help...but she is not at all what they define. Maizie is Maizie. My daughter. A child.

We are a world full of people wanting to put everyone else in a category, a slot, a box. People say, "Oh, if we can just get this one part of this child under control....if we can just figure out what makes this one tick like that when I want so badly for her to tick like this...why can't she be more like this or like that? Maybe if we call it that or this we can make it stop. Maybe we can change her to be more like that child or more like me?"

A label...is a label....is a label. My child has a whole list of her intended labels floating around on charts, graphs, medication bottles and IEP's.

The world wants to squeeze her into a box. Make her fit in. Push her this way and that. I just want her to be a kid. And yet, there they are...the labels. Our society is obsessed with them. I certainly have been as well.Maizie is big into the classification of flowers. She carries a book with her wherever we go. If we cannot find a particular weed or flower in the book she makes me search endlessly for it online. She says, "Keep looking mom. Don't give up. I know you can find it. This flower has to match something."

I took these photos as Maizie was diligently trying to classify a dead Black-Eyed Susan she had picked for me. You can see it all wilted in the background. Once she found it she said, "Yes! It fits in right here. See....this flower is just like that one. It has a match. Did you know that mom?"

Immediately when she said that I was struck with how a flower can be categorized, drawn and labeled. It has a place where it fits, where it grows and it needs a certain amount of water and sun. The list seems so easy. The labels so fitting.

This is not so for my Maizie. Her labels don't define her. They say little about who she is. Bits and pieces may seem fitting.

Finally, I don't seek out labels anymore and I accept that current labels say very little about who she is.

New labels change nothing.
Josephine Lawrence, Let Us Consider One Another (1945)

Sleep...the Never Ending Challenge

After Maizie recovered from her pyloric stenosis surgery at the age of two months I thought everything would become "normal" for her. That she would be a healthy little baby from then on.

One of our many hints that Maizie's health was 'off' came around the age of eleven months. Maizie was unable to fall asleep. Once she finally did fall asleep her slumber never lasted more than an hour before she would be up again. Either full of energy or crying her blood curdling screams that nothing could calm. These screaming sessions lasted from fifteen minutes to a couple hours straight. It was pure torture to watch her scream and not be able to help her. Nothing we did calmed her.
Joe and I began arguing over who was getting up with Maizie in the night. We argued over who was with her more during the day to hear the ongoing screams. Schedules were made to try and share the challenge of trying to help Maizie sleep. We tried having her sleep in bed with us, we took turns sleeping on the floor beside her crib, various music was played, lighting adjusted and the list goes on. Eventually nothing was working and our arguing intensified. There was really no fair way to share her amazingly erratic sleep schedule so we made a drastic decision. A pact was made that we would both get up with Maizie. Together. Every single time.

Of course I still became upset on occasion since I was with Maizie all day. Maizie rarely napped but had long screaming bouts. Once Joe began traveling we had to alter our deal. Getting up together worked for her first four years or so. Eventually long bouts of insomnia had to be divided up. Joe took four hours and then I took four hours. When he traveled I struggled and napped a lot once he came home.

When Maizie was doing well she was a complete joy to be with. I patiently waited for these moments or sometimes string of days to happen and was determined to be present whenever it seemed like Maizie was present with me. It was as if she was suddenly there with me and noticing me and everything was made wonderful again.

Every time Maizie was "well" I thought the difficult periods of time were gone...forever.

Time would pass and I would watch other moms with their kids and ask questions like this?

So...your baby takes naps? How long does he sleep for? Does he ever wake up and scream for hours? Does your baby throw up a lot? Is it hard to get your babies attention on some days? How do you seem so awake and with it when I am so tired with just one baby?

Eventually, I stopped asking the questions because the looks, advice and comments I got in return were too painful. It became evident that my friends were not experiencing what I was with Maizie.

There was never a moment where we had any answers in regards to sleeping and Maizie. Over the years she has had two sleep studies and neither showed anything worth while. It was not until Maizie was three years old and was unable to sleep for three days straight that the doctor's took notice.
Over time Maizie has begun to sleep better. She slept through the night for the first time when she was eight years old. Up until then she would wake up from about one in the morning and stay awake until about four and then sleep until six and stay awake all day. During this time we tried many ways to get her to sleep but eventually we stopped and just let her do what she needed to do during these hours. Sometimes she would color, play or watch cartoons. I remember baking and cleaning the house at three in the morning just to stay awake.

At three o'clock this morning I came downstairs to find Maizie sitting in her favorite chair. She had eaten an entire bag of beef jerky and three Slim Jims. The smell of the meat about sent me over the edge. Both of these foods are not allowed on her migraine diet. We allow them sparingly. I removed all the wrappers, covered her up all cozy like and encouraged her to sleep. She always says, "I am waiting for it!" I feel like I am always waiting too.

I imagine as an infant these long screaming bouts were due to the CVS? A correct diagnosis may have made everything different. And yet, with the diagnosis of CVS, Autism and her extra chromosome 6 we still find ourselves doubting. Are we missing something? Sunday was a really long day. Maizie was in intense pain all day. Monday was a bit better and today was okay as well. She seems tired though. I remember her like this as a baby. Sickness followed by a few days of not really being present in the moment. She is tired. I asked her how she was feeling this morning and she said,"Stop asking me that! You might make me worry and then it will happen." These ongoing bouts of CVS take their toll and insomnia does nothing to help.

When an infant/toddler/preschooler is screaming and in ongoing pain there is a reason for that pain. If someone is telling you it is your imagination or your child is just being stubborn or manipluting...run...run far away and don't look back. Go to the next professional and if they don't listen move on to the next. Never hesitate to fire a doctor, therapist or counselor if they are not taking your child's pain or situation seriously. People will talk about you, say you are paranoid or obsessed. Let them.

Cyclical Vomiting Syndrome

First, thank you for your comments, e-mails and links for support. We do appreciate every single one of them. We are home now and getting settled back in. Maizie is now keeping down food and feeling better but still weak. We have a new diagnosis! Join us in another trip down the yellow brick road to diagnosisville!

The information on CVS (Cyclical Vomiting Syndrome) also known as Abdominal Migraines does not lie when it says determining a diagnosis can be a long and arduous process. The first time we considered the possibility that Maizie had CVS was back when she was about five years old and had a similar string of "episodes". We were searching online and came across it and thought, 'Eureka! This is it!" Well, the doctors all disagreed and we moved on. Maizie was even put through the invasive abdominal studies to determine a cause for the spells. Nothing was found. (Finding nothing is a big ol' red flag for CVS) Eventually Maizie was diagnosed with seizures instead.

Now, we are told that it is possible she still has seizures. We will find out for certain when we begin weaning her off of the seizure medication. A process we will begin once her strength has returned and we are certain this ongoing bout of CVS has ended. A prcoess that will make me nervous to say the least. She has a biological history of epilepsy so the neurologist is being extra careful. The weaning also has to be done very slowly since she has been on seizure medication for years.

Once again we have been thrown for a loop. We researched, saw doctor after doctor...all who agreed it was likely Maizie's episodes were seizures and or migraines. They were all accurate in that they were abdominal. The neurologists and the Cleveland Clinic all listened to our idea of CVS and said it was possible but that was it. There was always a little doubt since her episodes manifested so differently. I think ultimately the confusion with diagnosis came from the way her CVS presents itself. Maizie can have one episode a week and it will only involve vomiting and being very tired for a day. Every where I read this is not really mentioned as a characteristic of CVS.

The GI doctor way back when Maizie was a preschooler told me that children with CVS vomit several times an hour. Maizie's episodes are anywhere from one to six times a day. Of course we saw this same GI specialist in the hospital this week and he insisted that he had given Maizie a diagnosis of CVS way back when and we never returned to see him. Are you kidding me? I would have known if we were told anything about a diagnosis since we were beyond desperate to find help for Maizie. Joe was less than thrilled with the meeting he had in the hospital with the GI doctor but both agreed they needed to focus on the "now" and move ahead to find relief for Maizie. Depending on how this GI specialist treats us at our follow up visit we may be "moving on" to another specialist. If there is one thing I have learned it is to not waste my time putting up with doctors who treat us like we are idiots.

I was confused because Maizie's episodes look so much like a partial seizure. Her eyes blink, she becomes disoriented, fearful, unable to communicate, sweats profusely and the list goes on. It is all followed with a long sleep just like seizures can be. If you look up the postictal part of the seizure that describes what it looks like for Maizie.

It is amazing that we have not seen more hospitalizations in the past few years. When Maizie was a baby/toddler and preschooler she was often hospitalized for dehydration for ongoing vomiting that was often attributed to some unknown source and then they subsided for a long time. We focused on more pressing behavioral and learning difficulties. When I read where some children are diagnosed at the age of two or three I think, "What on earth did we do wrong?!" How was this missed for so many years? You can't help but beat yourself up. Along the way though we were also searching for more than just answers to these episodes. We had ongoing developmental, behavioral and other health concerns that we were trying to find help for.

Many of the parents know who read this blog there are so many aspects to helping your child that some take front and center while others take the back seat. These aspects tend to shift and change as time goes on. When health issues arise the developmental issues go on the back burner for a time. As a parent of a child with multiple challenges moving back and forth between the pressing concerns and the not so pressing concerns is beyond exhausting and many times very confusing. All the while you try diligently to make some sort of balance and sense out of all the areas you are trying to help your child with. Of course you also want your child to enjoy simply being a "child". This, to me is the most heart breaking aspect of working towards a diagnosis. Maizie has spent much of her child hood lying in bed, with the lights low feeling very sick intermixed with very challenging behaviors, depression and learning challenges. Where do you fit "normal" childhood experiences into all of that? It is hard, very hard. But you have to do it. Above all that has been our first and foremost focus for Maizie.

Over the last few days I could see Joe and I going through several emotions with this new diagnosis. At first we were both filled with anger and just felt furious with every doctor we had to talk to. On Sunday after our second trip to the emergency room we were talking to the neurologist and she told us that the vomiting needed to be looked into. She explained that it was not seizure related and that something was going on. I handed the phone to Joe and choked back tears. I could not stand the thought of more testing, of more "not knowing". Once at the hospital again the GI specialist insisted that without a shadow of a doubt Maizie had CVS. The pediatrician and neurologist agreed. I was once again angry and devastated. That passed and then we felt sadness and hopelessness and finally a sense of relief that there is hope now that we know what medications will help Maizie through the episodes. Finally, we felt hopeful and relieved.

The confusion comes in when we realize we have been through this before. The list of wrong diagnosis’s she has been given is long. Very long. So, why does a diagnosis matter? Is this just another wrong diagnosis that we will study and treat her for only to be disappointed when treatment does not work? God, I hope not.

I hear some people speak of never wanting to put a label on their child. I think the labels they are talking about are indeed diagnoses. Why did we search and search for a diagnosis. The answer is simple. Without a diagnosis you can't properly treat the symptoms. Without a diagnosis or a label you can't gain more knowledge of what it is you are trying to treat or accept, sometimes even celebrate.

If CVS is indeed what Maizie is dealing with we now have the proper medications to help her get through the painful, ongoing episodes. For years we have not provided her with pain medications or anti vomiting medicines to make it through. We treated her as if she was having a seizure. Once rested we encouraged her to get up and get moving! I believe pushing her to make the best of the situation would sum it up well. Now, I look back and my heart breaks a little because now we know she needs sleep and lots of it during these times. Maizie will need an ongoing medication to help her avoid the CVS episodes. Stress should be kept very very low. (That we always try to accomplish) The abdominal pain is intense and we did not know Maizie was in so much pain. Did I repeat myself? Possibly, since this for me is the most painful part of all of this. My daughter has been suffering with this for years and we put her on the wrong medications and failed to treat her pain. Of course, live, learn and move on. Once we found new ways to discuss these episodes with her we realize she was having pain all along and it was not being acknowledged or treated. Her inability to communicate pain has played a part in missing this diagnosis for so long.

This brings to mind her diagnosis of autism which affects her ability to communicate. Without this diagnosis we would not necessarily have known to try out Lindamood Bell which helped her learn to speak and read, therefore increasing her ability to express herself. For Maizie the road to the Autism diagnosis was almost as long and torturous as finding the CVS diagnosis. It was not until after discovering her chromosome disorder that the Cleveland Clinic diagnosed her with autism. Doctor after doctor told us wrong information as to why Maizie was NOT autistic. Maizie was said to be too verbal, she made eye contact and was just too social to be autistic. I am not a doctor but I knew from the autistic individuals I talk with that these were certainly not characteristics set in stone for autistic people. Finding someone that would listen to us was a different story all together.

So tonight as Maizie is beginning to smile again and has begun walking on her own I feel that ball of hope welling up within me. Maybe this time we have finally found the answer to her ongoing vomiting spells (a.k.a. seizures). Maybe this year will be the year that when she goes into an episode we will finally know what to do to help her and it will actually help!

I can say that this bout of CVS has caused me to meet my medical goals quickly for Maizie. She had her echo and it came back with one minor abnormality that will need to be looked into when she is older. Luckily, nothing to stay up nights worrying over. This week she had her abdominal ultra sound that came back fine. Maizie has had every blood test known to man in the last three weeks and all have come back normal. We are still waiting on her test results for Rhett's Syndrome and Fragile X that the Cleveland Clinic wanted done....but I finally had them taken so that was an accomplishment! Her 72 hour EEG has been done and led us to the diagnosis of CVS. Her iron pills are working and have taken care of her anemia. All in all, we have made progress. Accurate Diagnosis=Progress. God willing you will read my blog soon and find out that we are out and about again. Hopefully every post will not be about vomiting and searching for answers. I often wonder if I began blogging back when Maizie was a baby...what would it look like? I have lost friends due to our ongoing search for answers. I know some people think we are overly obsessive and some not so cool people even think we make this stuff up and just enjoy the endless drama of it all.

I had one friend say to me tonight, "It is a good thing you have the personality to deal with all of this and get the answers to help Maizie."

I cringe. It is not a personality. It does not matter if I am an extrovert or an introvert, and INFJ or an ESTJ. What matters is that I love my child and I want her to have a childhood. Maizie deserves to be well and happy. Hopefully, my friend, no matter his or her personality would do the same. Maizie has a chromosome disorder, she is autistic and now we are pretty certain she has CVS. All of these make up my lil'Maizie and I love every part of her. I love her autism, I love her chromosome disorder and amazingly enough I love her CVS. Maizie is Maizie and these aspects are a part of her but they are NOT her and yet they make her unique, they make her the Maizie I love. But, through knowing they are a part of her we can assist her in taking these very unique things about herself and moving forward with them. They won't be going away anytime soon.

I will admit that back in the day I was, for a time, "a curebie". Who would not be after every doctor we went to just said, "Hmmm...she sure is a complicated child." and sent us on our way. But, I found the outlook of searching for a cure exhausting and fruitless. Not to mention looking for a cure without a diagnosis is even more exhausting. By the time we got the diagnosis I had come to accept that I needed to change and adjust my expectations. Suddenly, the world seemed brighter and everything shifted slowly. It is weird to describe and I truly believe that only parents who have been there and then experienced that switch to loving the diagnosis can understand. And yet, the best way to go about in finding the correct diagnosis, the correct treatment and the willingness to adjust our expectations and change bits of ourselves (okay, large bits of ourselves) to assist Maizie is not about personality it is simply all about love. Call me cheesy but that is my biggest remaining feeling after this roller coaster of a ride these last several weeks. Finally....an answer. Is it the right answer? Argh! Time will tell! I hate the waiting, the wondering. No, I despise it.

As I am babbling on here I am sure some think, "So if you could wish Maizie into not having these diagnoses would you?" Ah, that is the million dollar question. And what good comes of asking it. Nothing, my dear. Nothing at all.

Video EEG Begins Early and The Mummy!

We took Maizie to the neurologist yesterday and the doctor was able to get Maizie in early to the hospital for the 72 hour video EEG. We were a bit surprised as we were not prepared mentally yet. Luckily, I had all ready purchased some crafts to keep Maizie occupied. She can not leave the immediate bed area except to use the bathroom. I had no idea it would be that restrictive. Lord help us!

Maizie did quite well considering we drove straight to the hospital. She had a difficult time tolerating being touched when they put the sensors on and is obsessing about when it will be taken off. Considering her inability to understand time it is a tough concept to explain. We are going to try and draw up a little calendar to help her.

She had a mild seizure towards the end of having the sensors being put on. I really hope they caught that one! Now, as strange as it sounds...we are praying for seizures while we are there! Without some record of them it is hard to know how to treat them.

Joe and I are taking turns staying with her and expect a few visitors over the weekend. Maizie is such a good sport. She has all ready handed out quite a few stickers to the nurses.

We took our little DVD player and this morning after being woke up at six a.m. for a blood draw (argh!) she has chosen to watch The Mummy. She pointed out to me as I was getting ready to leave a shot of the Mummy with the wrappings on his head. I did not even get that she was comparing her current, "look" to that of the mummies! Oh, my! I will have to call Joe and have him talk to her about that one! This is one of Maizie's favorite movies. She has quite the eccentric taste.

I will keep you all updated. I no doubt will fall behind on the blogs but know that I keep you all in my prayers. Especially those whose children, spouses and some of the bloggers that are going through health struggles right now as well!(you all know who you are:) Miss ya all! Hugs!

Our Morning Seizure Scare

Last night I was trying to fall asleep but just could not reach La La Land. Suddenly, Darwin was standing next to the bed staring at me and pushed his nose onto my head. An intruder? I figured if this was the case Darwin was a worthless guard dog! Does he have to go potty again?!

Finally, I got my lazy butt up out of bed and first checked on Maizie. She had vomited....everywhere. I think Darwin was trying to get me moving to help Maizie. What a good dog! Vomit was all over the bed, dripping down into a container of baby doll clothes, a tote of stuffed animals and all over the floor. Yuck! My poor baby! I got her all cleaned up as she was laying there like a rag doll. My instinct told me it was another abdominal seizure but I was not sure. This flu bug has really made things hard to differentiate.

The next morning when I woke up she was still sound asleep. I took advantage of the time to shower...thank God. We had to go get her Lamictal level drawn as soon as we could so I was running around making sure I was ready.

Finally, she came downstairs and seemed to be doing great. She was happy, took her morning medications and then she began reading a library book about rats to me.

I was listening intently because it was all about people eating rats and it was quite disgusting, therefore very interesting. Then, there was a pause in the reading. I look over and Maizie had the most vacant look on her face that I have ever seen. It was as if she could not look at me or focus on anything. I said, "Maizie! Are you okay?" Maizie said,"Dizzy Mom." The words slurred out very slowly.

I went to where she was sitting and looked at her pupils and asked her if her belly hurt. She said, "I can't see!" Well, that was the kicker. I about freaked.

I called the neurologist and the nurse told me to take her to the ER right away. Easier said than done! She could barely walk yet alone comprehend anything I was saying. I threw on our coats and shoes, grabbed my purse and led her wobbling out to the car.

At the hospital she continued to be non responsive. I kept thinking about my older sister and the stroke she had when she was six years old. Was Maizie having a stroke? Her pupils looked normal but she was not responding even after several minutes. Normally, she is very out of it after a seizure but this was very very different. Everything about this seizure was different.

They got us right back to the room. You could see everyones looks of concerns since she looked so pale, wobbly and her eyes were just empty. Terrifying and heart breaking. I had called my Dad while driving to the hospital and he met us there. Joe has been in Utah all week. I was sobbing when I called my Dad which is totally not like me. I normally hold it all together and then freak out later when I am in the privacy of my own home. Well, not this time. Being up much of the night and dealing with seizure after seizure all week had pushed me over the edge. I could barely answer the nurses questions. I felt embarrassed and did not want to scare Maizie but I could not stop crying! The nurse put me at ease and then once my Dad arrived I was fine.

They put Maizie on an I.V. because she was a little dehydrated. Her heart rate was very high when we arrived and this had the doctor worried. They took labs and they all came back normal. We don't have the Lamictal level back yet though. After about an hour and a half Maizie began to speak and respond appropriately to questions. I was so relieved to see her looking a bit more coherent.

This is the first seizure I have ever taken Maizie to the emergency room for. Maizie was a real trooper. She cooperated for everything and when the doctor told her she was an excellent patient Maizie said, "You are welcome." So sweet. The nurse gave Maizie a stuffed bear that is praying and she was thrilled with that. Later, when we were home and she was getting her energy back she wanted to blog about her experience and typed it herself and even spell checked it and everything. Amazing!

Tomorrow we go to the neurologist in the hopes of getting the Lamictal results back and talking through what has been going on this last week. It is possible that the flu caused her to lose much of her medication increasing her seizures.

Later I asked Maizie what it looked like when she could not see and she said, "The house was moving up and down, up and down." So, I don't think it was that she was 'blind' but that she was very dizzy. The doctor said it was the postictal state that was so scary and intense with this one. I guess so. It had me totally freaked out. Maizie is typically very tired and a little out of it but this was beyond anything I had ever seen before. Seizures are tricky and confusing. No one seems to understand what is going on.

I am so glad we are back at home. I am praying she sleeps all night because I am tired. This week has worn me out. I can't believe we have a three day EEG next week. I don't know where I will get the energy for that.

When we returned home I layed Maizie down on the couch and thought something looked strange about the carpet. Darwin had pulled down the fish food, opened the jar and spread it all around the floor making it look like it had polka dots all over it. I am guessing he enjoyed rolling all over in it considering how it was ground into the floor. He also chewed up another library book. Argh! I thought I had everything picked up but apparently in the rush to leave I forgot a few things. Normally Darwin is quite well behaved. I am sure he sensed something was wrong and acted out. Maizie did stop long enough on the way in to scold Darwin by saying, "You bad bad dog! What will the fish eat now? They might die!" She is such the disciplinarian when it comes to the dogs. Cracks me up.

Joe should be home shortly and I am going to try and take a nice hot bath. Maybe read a chapter of my current book, Zed.

The Bad "Bug" and Mr. Bean Takes A Holiday

Maizie has had the flu. A bizarre flu that appears to come and go. According to the pediatrician it is going around. We have been very lucky in that Maizie has not had an illness like this for over a year. At the same time she is having a harder time due to her seizures which were all ready on the increase.

Now, she is back to having one to two seizures a day along with this supposed flu. If you are one of her loyal blog readers please keep visiting. Possibly, you could dig into her archives. She has some great stuff in there. Currently she is in no mood to blog but she assures me she will do it when she is ready.

Today was a long day. Okay, almost every day since last Friday has been a long day. We are going on day six of this "bug". I am going stir crazy. I actually thought she was over it a few times. Last night she seemed great. That all changed this morning. The pediatrician says this is what they are seeing so I am trying not to worry. For Maizie, he agrees that it may take even longer for her to recover. I called the neurologist and she agreed and added that the seizures are probably on the rise due to losing her medications from throwing up. She wants me to take her in for a medication level tomorrow. Oh, and by the way her MRI came back normal which is good news. I am praying the EEG gives us some very needed answers.

I have been asking Maizie off and on if her belly was hurting or if she was having a head ache. Getting Maizie to admit to pain or describe it is next to impossible. Finally today she said in her most serious tone, "Mom! Don't ask me those words ever again. When I wake up tomorrow you better not say those words! You are an adult. You should know how I feel."

Ugh. She always knows how to put me in my place.

We did get to watch Mr. Bean Takes a Holiday. Maizie loves Mr. Bean. I think Maizie appreciates his unique way of communicating. She often looks at me and says, "Do you know what he is saying?" If I say, "No. What?" She will tell me what he said according to her unique outlook on the movie and it is usually quite cute. I think she understands his movies more than me. There was a scene where Mr. Bean was lip syncing an opera with a kid he was traveling with and Maizie was laughing so hard. I must admit it was quite cute.

Sensory Memories Understood

Chaotic Idealism wrote a post today about 'stress based regression'. I think it is a very important read. We have always considered Maizie as being a child who regresses. Now, after reading her post I see it in a new light. Of course with Maizie's ongoing seizures we do see regression in other forms too that are very concerning for us. But for this post I will focus on the regression that stems from over stimulation, from an environment that is clashing with her needs.

It hits home with something we realized a few weeks ago when we were watching old behavioral video tapes of Maizie. I was appalled to see a few obvious areas of "over stimulation" or sensitivities that Maizie had that we were unable to recognize. I know I should not be too hard on myself but looking back I really wish we would have figured out what was upsetting her and been able to make a few simple changes. I am sure at the time we were making major changes all the time but still....it was really hard for me to watch.
I am amazed and humbled that Maizie was able to tell me exactly what she needed as she watched the video. I was not wanting her to watch the videos. I worried they would upset her or she would view her past differently. She begged me and I gave in. She has been fine since viewing them and taught me many lessons. Of course, keep in mind it would have only been within the last couple of years that she could have watched these videos and communicated with me on what was bothering her. Before that time she would not have had the verbal skills or possibly even the comprehension skills needed.

The first thing we noticed was during her bath time. Maizie was three to four years old in these videos. She would scream from the start of bath time until we finished cleaning her. I asked Maizie if she remembered what was upsetting her so much during the bathing time. Maizie laughed and said, "The water is loud and it feels bad on her body." Whenever Maizie sees herself on video she says things like, "She is sad." or "She is pretty." I know she understands it is her when she was little but she still does not speak of the video as if she is watching herself.

Anyway, when she clearly told me what was wrong with the bath time I about fell to the floor. Duh! What on earth was I thinking back then? Neither Joe nor any professional watching the tape figured it out. We knew the water sensation bugged her but we were oblivious to the noise factor.This also made me realize that she had the hardest time in the bath tub that was large and did her best in a small tub. Her best bath time experiences were when she would beg to bathe but only to play in the water so at those times I never ran the faucet to wash her hair or had to use wash cloths. Now, we use those disposable baby washcloths that are very soft. I know it is not very 'green' but they don't hurt her like regular wash cloths seem too.
Once Maizie pointed out this almost too obvious fact I noticed in the videos that she calmed down almost immediately once we turned off the water. We always kept the water running while washing her hair, therefore causing her to scream and hit at us during the entire procedure. While we watched the video I was horrified at how obvious this was! It was painful for me to watch. I was saying to myself in the video, "Turn off the water and she will relax!" We spent years bathing her in this fashion. All we would have had to do was run the bath water and get everything ready before even bringing her into the bathroom. If we did not want to rinse her hair from the tub water we could have easily filled it from the more quiet sink faucet.

I even noticed that before the bath when she was very upset she would hyper focus and scream about who was going to take her into the bathroom and who would bathe her. She would get very panicky and say, "Mama carry me! Mama do it." Then, during the video I noticed that Joe was the one who was washing her hair and doing all the bathing. Through the entire bath she kept repeating that Mama should have carried her. I really believe this was her way of trying to explain that we were not doing it in a way that was helping her. Had I listened to her I may have carried her in while Joe was getting the tub filled. If she associated Joe with the loud faucet noise it would make sense as to why she was screaming for me to hold her.

I know that looking back can't change what happened then. As Maizie was watching this video and explained why she was so upset I said, "Maizie....I am so very sorry we could not understand what you wanted, what you needed." Maizie smiled and said, "Mama...it's okay. I still love you."

Wow. As Maizie would say when her emotions are getting too strong, "I am melting!"
I also noticed major trouble with transitions during the video. I asked Maizie why she was screaming in the car and refusing to get in the car seat during one of the videos I showed her. She said to me, "The seat hurts." Plain as day! Well, no wonder these major...and I mean huge melt downs stopped once she was able to stop using a car seat. We were pretty much forced to use the car seat however. But, I wonder what we could have done to make it more pleasant for her.

I also asked her in one video why she was so upset with Joe leaving to go to work and me trying to get her in the car. This is what she said, "It is fast. It hurts when it is too fast."

Are you kidding me? I was amazed. I still am amazed. It has taken me a few weeks to process it all. I felt like total crap at having not figured some of these most simple things out. Now, would it have made a big difference if I turned off the faucet and changed the bath time routine? I guess I can't know for sure. Considering how fast Maizie explained the discomfort she felt in the videos......well, I am guessing I would have noticed some improvement.

Now that Maizie is able to verbalize her needs for the most part she is a much calmer and happier child. I do believe that many of her "behavioral" outbursts were her trying to tell us that the way something was happening was not good for her. I do think we were doing our best at the time. However, I will forever think that we should have thought through her routines in a more painstakingly detailed way. Broke down every task into little steps in order to discover what was the breaking point...where could we change something in order to help her feel more comftorable.

Maizie can't always explain why something is not right in her environment. It is sometimes hours or days before we get to the root cause of a serious melt down or fear of something that has taken place. Sometimes there are no answers and we are left wondering what went wrong.

Chaotic Idealism's post reminded me of these times with Maizie. I know looking back that Maizie's "bucket" was full early in the day and we forced her to do more, go more places and see more people. There would be days where Maizie would refuse to leave the house. I would get so upset with her because I wanted her to go to school or to a play date and there she was...huddled in a corner, screaming and holding on for dear life. Friends would think, "How can it be you can't make your four year old get in the car and go to school?" Well, it is true. I could not make her go. Her bucket was overflowing and she had no where to put any new stimulus coming at her. It took me years to respect that about Maizie. I had to change my lifestyle and my expectations of Maizie. Once I did that everything slowly turned for the better.

We still have many many struggles but I look through new eyes when we have them. I ask myself new questions and change our routine, our life style, sometimes even our friends to accommodate. It is never easy but the rewards are wonderful. I wish I would have learned to stop fighting against what Maizie needed way earlier. I wish I would have stopped trying to make her conform to what teachers, friends, doctors or other parents thought she should be like. Or better yet what I should be like in caring for her.

I should have listened to my gut when I thought Maizie had sensory processing disorder but doctors belittled my concerns and led me to seek answers in other directions. Finally, I stopped worrying about getting a diagnosis for sensory issues and read books on the subject and bought products I thought would help. I put myself in her place and tried to see things through her eyes, ears and through her skin. No professional can truly do that, only Joe and I know her that well.

I slowly began to accept that Maizie was a child who needed time alone, quiet, low lighting or none at all, air conditioning, cotton clothing with no tags, small bath tubs, shampooing without tilting the head back, no showers because she feels wobbly, special toothpaste that will not "burn", special foods that do not "stink" or are not of "bad color", fidgety toys, baggy shirts, tight pants, socks that 'feel right', something special from someones house before we leave, transitional objects for the car, deep pressure through hugs, heavy blankets or her squeeze machine, our perfume and scents are best when "Maizie approved", vacuum only when she is happy in her room with the door closed, no new movies or music unless she approves the "newness" of it, cutting her hair when she is ready and willing...not when I want it done, often silence is more rewarding in the long run than listening to "my music" while in the car,smells really can cause melt downs, she truly will learn when her 'brain wants to" (just like she tells me), just because she likes watching something does not mean she wants to participate and that has to be okay, if she says she can't do something it is not necessarily that she is being stubborn...more than likely it is the truth and I need to respect that, just because she can do something one day does not mean she will be able to or want to do it the next, she requires time to determine physical pain and sickness (she needs help knowing when she is sick), changes from one place to the next need to be slow and marked.....and the list goes on and on. What is the most important thing we have discovered and changed? Our expectations. Our attitudes. Our "way" of being. Our energy. Our lifestyle. So much of what we need to change and adjust is not within our daughter, but within ourselves.

Once again, I encourage you to read Reports from a resident Alien at Chaotic Idealism. I continue to learn a great deal from her blog.

"Dazlious"

The day began normal enough. Maizie slept in which was awesome. We were getting ready to go to my nephews house to babysit him for a few hours when Maizie had a seizure. While she was ready to lay down and sleep afterwards she said real sweet like, "Mama, please just go to Christians and take him a happy meal without me." I told her I felt bad going without her but she was adamant. What a sweetheart.

So, while Joe cared for Maizie I took off for Christian's. Once there I had lots of fun playing Webkinz with him. He was so cute explaining how to play his favorite games.

When I got home Maizie was ready to go to Marie's to play with Christian. We jumped in the car and drove back across town to Marie's house again. I was not thrilled with driving back but Maizie had very little social activity this week and I really wanted her to get to play with Christian.

If anything today reminded me how badly we want some answers to these seizures. One cute thing Maizie said today as she was feeling quite sick during her episode was this, "Mom....I have to tell you the truth. I am sick because last night I was moving back and forth in the tub fast. I saw the bubbles in the tub. I filled the cup with water and I just had to drink it. I am sorry. I just had to do it. That is the truth as to why I am sick." I explained that I doubted she was sick from the bubbles. Of course I had to remind her again that drinking bubble water is against the rules.

Tonight Joe and I watched Snow Cake. This movie was amazing. I want to encourage everyone to watch it with an open mind. Sigourney Weaver plays an Autistic woman named Linda who lives with her neurotypical daughter in WaWa Canada. Joe and I have been to WaWa and eaten at the Chinese restaurant shown briefly in the movie. It was fun for us to remember that little town through a great film.A tragedy befalls Linda's daughter and brings a man into the life of Linda. I was so moved by this movie. I cried and laughed and just really enjoyed it. There are some very touching moments. For much of it I could not help but see some of Maizie in this character. The character Linda has a real gift for language and sees such joy in life. I don't want to tell too much because I don't want to give it away. I could be nit picky about a few things but I am not going to be because over all the movie was just down right "dazlious".

Maizie's MRI

Today was the big ol' MRI. We woke up extra early to be sure that Maizie would not forget and get a glass of water or eat her breakfast. When I went into her room she was putting together a puzzle on her bed. Her only light, a flashlight. The puzzle went a lot smoother once we turned on the bedroom light. I have no idea how long she was up before us but I imagine it had been quite a while.

At the hospital we checked into peds and the nurse insisted on using Emla cream before giving Maizie the I.V. It was a sweet gesture but for Maizie this numbing cream is nothing short of torture. Maizie has impeccable manners when it comes to dealing with the medical professionals so she smiled big and tried to stay positive while waiting for the nurse to remove the cream. Whenever the nurse left the room Maizie would say, "When is she going to take this stuff off? It itches...under there...under my skin...I can't take it." She can take the minor pain of an I.V. or blood draw without any difficulty. But, put some mushy white stuff on her arm with tape and she really has a tough time. Next time we agreed we would refuse the white stuff.There were very few nurses on the floor so our very needed nurse had to leave the room many times to answer the phone and help other patients. Some poor kiddo was screaming while getting a catheter. Maizie said, "I think that child is not feeling well." Most definitely not. Catheters are no fun at all.

Luckily, I was prepared with a wide assortment of "Maizie entertainment". She had been practicing cutting out hearts and brought several with her along with some stickers. I pulled out the markers and she began making a card for the nurse, the anesthesiologist and the techs at the MRI. Too sweet. She also brought a little paper umbrella, the kind you put in drinks... for the nurse. She had seen one at a Japanese restaurant and asked if we could buy some. We found them with the toothpicks at the grocery store. For $1.99 Maizie has had hours of entertainment with about twenty little paper umbrellas. Everywhere we go she carries a bag of these umbrellas and passes them out as little gifts. Everyone loves them.

Finally, it was time for the I.V. and Maizie was her usual brave self. She watched the whole procedure. We were all a bit confused when the blood never went very far into the tube. The nurse kept washing it out or whatever they call it and seemed to feel confident it was in there good. Joe and I had our doubts. The nurse had to ask us if we had ever tried the ketogenic diet with Maizie. Argh. Uhhhh...what's that? I have only read every book known to man about seizures. Of course I know about it! We have actually been told not to bother using this diet with Maizie. By three different doctors. Including the Cleveland Clinic. That is not to say they don't recommend this diet to others. Due to Maizie's autism her food issues are a major block to using this diet and most think it would have little to no effect. Anyway, it just frustrates me when we always get "advice" like that. I know people mean well but after nine years it does get old.

Once down to the MRI Maizie handed out her cards. Everyone seemed quite pleased with their hearts. The doctor put in the white creamy medicine to send Maizie off to la la land and amazingly enough Maizie stayed wide awake. Four people began poking around on her arm feeling for the vein and for hardness. Apparently, the first dose of medicine was put into an abyss within her arm.
Quickly, the anesthesiologist began an I.V. in her other arm and began administering the medicine again. I have never seen an I.V. put in so fast in my life. It amazes me we arrived over an hour early to have the nurse do the I.V. when the doctor was such a pro at it.

Maizie slowly fell asleep. Any parents out there familiar with MRI's know the sleeping potion puts them to sleep so fast it is quite eerie to witness. It also moves through their system very quickly and they don't stay asleep very long at all. Initially however, the child goes from looking around nervously to a limp doll within seconds. The nurses always warn the parents since most are reduced to tears at the sight of their child going immediately out. I had witnessed this with little Christian last summer when he needed an MRI. He fell asleep so quickly in my arms it scared me. I was shocked. In our case, Maizie never falls asleep easily. She fights it. A lot. They had to pull her out of the MRI four times to readminister the sleeping potion.

I felt guilty having her put to sleep since the nurse kept saying to Maizie, "You are so good! So cooperative! So brave! A model patient!" And then she would say to me, "Are you sure you need to put her to sleep? She is so good." I had to remind myself that I know Maizie and sitting still for 30-45 minutes with a large plastic "cage" like thing wrapped around her head would not go well. Sitting in a tiny tube would really set her off too. When I had a scan before my surgery I remember almost freaking out and I am an adult. So, I figured putting her out was the best option. I got over the guilt when they began strapping her body down to the table. She would have never tolerated that awake.

While we were sitting in the waiting room during the MRI a woman went up to the scheduler and said she had an order for an MRI. She handed over the script and the secretary just stared at it. The lady went on to say she needed her scan done today because she did not want to drive the hour back to her home. She had just came from the doctor's office and wanted to get her scan done today. I could not help but over hear and wanted to say, "Are you kidding me? What do you think this is...Great Clips?" The scheduler explained to her that they had to call her insurance company and go through the approval process which would take about twenty four hours. The woman's response was, "Well, can you direct me to a place where they can manage to make a phone call today?" I could see the schedulers skin crawling. I know mine was. This was my waiting room entertainment.

The MRI went well and I am pretty certain it will come back fine. It is the upcoming EEG that I am really hoping and praying we get some answers from. We need to know if she is having any more seizures than the ones we are seeing. Is she having migraines and what medication would be of the most help? Not to mention one to two seizures per week is too many.

Her heart echo came back great. There was one abnormality but it would be very rare for her to have any problems with it. The cardiologist said that she will need to be looked at again in her late teens. So, for now we are quite pleased with those results. Thank you Ed and Marsha!

Two tests down and the EEG to go! Wahoo! Almost done. The EEG will be three days or longer. I am starting to get things together to keep us all busy during those days. We have begun the many "talks" to prepare for the EEG. I can tell she is nervous.

Reflections

I began blogging on Monday February 5th, 2007. This will be my 225th post since then! I can't believe it. I was not really sure if I would stick to it and enjoy it but I have really fallen in love with blogging.

I have one friend who said that blogging is a way for people to make their insignificant lives seem significant to themselves. Something like that. Needless to say, I was not impressed and a little hurt by that comment.

Blogging and reading blogs has opened up a whole new world of support, understanding and friendship that I have never been able to experience before. I love reading about all of the children similar to Maizie. I gain ideas and inspiration. Much more so than any counselor or therapist has given me in years. Since blogging I have been able to stop my personal counseling. I used to go mainly to talk about Maizie. I know it drove my counselor nuts and he was always asking me to talk more about myself but I told him that was not what I needed. Lets face it, many of our friends just don't want to hear about what we are going through all the time. I understand that so I paid someone to listen.

Before I blogged I journaled. I have filled many notebooks since we adopted Maizie. Oh, how I wish I would have been blogging back then. People would be in awe at the progress Maizie has made.

I remember writing in my journal with it resting on the kitchen counter. Maizie was four. Tears rolling down my face. Maizie standing behind me, screaming and crying, hitting my thighs over and over again. She had not been sleeping and therefore neither had I. I would just stand there and write what Maizie was doing while it was happening. I needed this break in order to try and help her move past whatever she was struggling with. Most of the time understanding what she needed was impossible. Often, the only respite I had was during this time of writing. I could "write away" her screams. Make it seem as if I was outside of my current world, observing. Sometimes ideas would come to me as I wrote and I would turn around to my very sad, very sick child with a renewed strength. With writing came a power and a feeling of peace amidst Maizie's pain. Writing and prayer often worked together. In a way writing is very much like praying, a working out of issues. Laying it all out for God to wrestle with when I think I can't handle anything more.

This is a picture of Maizie at about age four. No one would have guessed she was struggling by looking at most of the photos. Her main words were, "I like horses." and she screamed most of the day, found it difficult to sleep and was abusive to herself and others. Yup, progress has been made.
In this past year I have written about many happy and wonderful times. There have been some struggles too. We had a new diagnosis for Maizie. This brought a sigh of relief knowing that some of the most revered professionals saw what we saw and want to help Maizie feel healthy and happier. It also brought much confusion considering she is the only child we have found with this particular disorder. Once again, we felt alone and had no idea what to do. The doctor said Maizie still fits the diagnosis of Autism and we agree. This is where we find most of our support and ideas.
For this next year I would like to say I have some great resolutions but I only have the same goals I have yet to complete from last year. Many of them involve Maizie's care. She needs to see the cardiologist. We see a new neurologist that is closer to our home next week and are praying she will handle all of Maizie's medication needs. We will possibly return to the Cleveland Clinic to further investigate why Maizie's seizures are not slowing down. A lot of the same.
My resolution is to do all of these things with grace and love. To enjoy my family, to live life so that I can look back and be proud and feel peace. I also have hope that this new year will bring less pain for myself physically since my surgery.

We have a few goals that we continue to work towards. A bigger house will be needed. Maizie is growing up and needs more space of her own. The dogs need a big yard for running. I am not sure but I think we are itching to live in the country this time. Homeschooling will continue for now since we feel it has improved and enriched our lives more than we ever dreamed possible.

To everyone I wish a New Year full of love, learning, joy and peace. Thank you for your support, comments and for sharing your lives with me.

Joe wanted to pick out his favorite blog post from the year and this is the one he chose. He was pretty upset no one left any comments on it. Oh, well. Check it out if you have time.

Frog. Routine Change. Maizie Loves the iPhone.

This morning started out with my nephew Christian waking me up saying, "Mawa! Watz the passwurd? Watz the passwurd? Mawa!!!!" Ugh. Joe and I gave him a Webkinz frog that he is totally in love with. He came up with the most original and cute name for it. He named it, 'Frog'. At least it will be easy to remember. After getting him signed in and playing Webkinz Maizie made her way to the bathroom all happy and seemingly well.

A few minutes later I go in and find her sitting on the toilet sweating and saying, "Don't get near me! Don't touch me!"I hand her the garbage can and she throws up. Gradually her eyes begin to close and I manage to get her to the couch where she promptly falls asleep. Christian continues talking to Maizie despite her being sound asleep. He is used to her seizures and yet I think he rather think she is just resting and still listening to him than worry that she is not feeling well.

She had been feeling so well. It seemed like days since her last seizure.

For most of the morning she slept while Christian asked me a million questions about Webkinz World. He is working hard to decorate his lilly pad home and was trying to earn enough webkinz money for a tub. All in one morning. I don't think so! It took Maizie days to earn her tub.

We ended up having to cancel tutoring so Maizie could have a more quiet day at home. I was so sad about this since she had finished all of her homework and we worked our buts off getting it done. Luckily, she will be able to make up her session tomorrow.

Mindy came over for a while so Maralyn and Maizie could play. That made the day a bit better for us both. We were able to watch a couple episodes of our show which was a nice break.

This afternoon I was upstairs cleaning up stuff. When I came down Maizie was sitting all cozy with my iPhone. She had this very huge grin on her face. She had managed to look through all the photos on it, scan the phone numbers and watched five you tube videos. I was dumbfounded! Luckily, the videos she found were all dog ones. I think she did a search for dog videos! I am just amazed at how easy the iPhone is to use. Using my cell phone has been one thing Maizie has always struggled with. Now, with the iPhone she will probably become an expert. Now, if I can just get her to be more willing to talk to people on the phone.

Tonight I went to get my hair cut and jumped in the shower once home. Not thinking it was right at bedtime Maizie came into the bathroom yelling, "Whose gonna put me to bed?! Whose gonna put me to bed? I am cold! I have to go to bed! Whose gonna put me to bed?!!!"
Joe had stepped outside with the dogs for just a minute sending her into a 'routine change' melt down. Luckily, once Joe came back inside she allowed him to tuck her in bed. Normally this is a mommy only routine. I am typically not in the shower when it is her bedtime. The hairdresser took longer than normal and such is life. These "changes" in routine are at least easier to manage than they once were. Maizie fell asleep almost instantly. It is amazing how tired her seizures make her.


While I was sitting under the dryer at the hair place I saw an article in a magazine about Heather Kuzmich. She is one of the models on America's Top Model. She has Aspergers syndrome and is from Indiana. It was a brief article pointing out the stereotypical Aspergers traits. I came right home and put the show in to record. I might just make it in time for the finale. Possibly she has been voted out by now I don't know. I am sure there will be reruns. Does anyone know anything about Heather?The last few nights I have had terrible dreams. Dreams with a dead caterpillar and bird inside me. It was quite disturbing. Whenever I have a dream like that I think....gadz...what the hell was that about? What is up with that? I like to think these freaky dreams really don't mean anything. They could be from becoming hooked on the show Dexter.

Anderson Cooper 360 on CNN is about Autism tonight and features Amanda. I mentioned her amazing site in a previous post.

Daddy Does Not Practice!

Every now and then something happens that reminds us how far Maizie has come and how much more we have to learn. Tonight we were doing some math work. It is possible that I had asked her to do too much school work today contributing to her impending melt down. I asked Joe if he would help Maizie with the work while I went to photocopy some papers. Joe agreed and sat down by Maizie.

When I came back upstairs Maizie was gradually melting down. No, I take that back...she was melting down big time! She began screaming, "Daddy does not practice! Daddy does not say the words!" I tried to explain that Daddy understands the work and can help. Eventually Maizie explained or rather yelled in desperation, "It can't be a different person!" Bingo! The two people that do 'sit down' work with her 90 percent of the time is her tutor and me. Not only that we have to use very specific language when we work with Maizie. We meet after tutoring and discuss what we are saying for certain concepts and how to teach them. If we do the math too differently from one another Maizie does not understand and becomes frustrated. After a while we gradually add in more terms to help her be more flexible. You might be wondering why I don't go over all of this information with Joe too. The truth is it takes too long and Maizie is usually too tired to do the work when Joe is around in the evenings. Joe does not have time to study the Lindamood Bell process like I do. Joe and Maizie do things that don't 'resemble' learning at all, like making a rocket or cooking. I need to accept that and leave well enough alone for now, I think.

Maizie continued crying and did something she has not done in months. Covered her body up with the couch cushion and refused to come out. I let her know that we now understood that she does not like changing the people who help her do school work. She began sobbing which lets me know that she accepts that I finally understand.

She then screamed, "The sun is burning me up!" I knew this meant that the living room light was hurting her eyes so I turned that down. She remained under the couch cushion until she suddenly threw it off screaming, "The sun is going to melt my vitamin. I can't take it! You always make me take it!" We have had numerous vitamin arguments before this so I agreed to look for a new vitamin (we have tried many vitamins, she hates them all) that she could tolerate. She continued to be furious and was reaching the point of no return quickly. I tried to give the evening medications to her and she became even angrier. I knew that a few minutes after her medications she would be much calmer and have less anxiety.

I told her again that we would not make her switch who helped her with school work and that we would change her vitamin. Slowly she peered up at me and began moving her hand towards the cup of water. I quickly put the most important medications in her mouth and she took them reluctantly. I told her we understood her and that we were sorry we did not see the changes that we threw upon her. She seemed relieved and took the rest of the medications.
I helped her up to bed and then she asked if she could stay up longer and make a card. I agreed and asked her for a big hug which she agreed to. Several minutes later she calls me up with a card to give Daddy. It says, "I'm sorry Dad. Forgive Me." She wrote it on a heart that she cut out and glued to a piece of paper. I took the card and told her that she did not do anything wrong. I have to reassure her that it is okay that these changes are hard for her and that until she is ready we will work through them little by little. I explained that Daddy loves her and knows that changes like that are hard for her. I had to make her understand that he does not take it personally. She says, "I know ma ma. Just give it to him...okay?" I promised I would and my heart cracked a tad bit more.

Today the tutor had told me that she thinks Maizie's ability to focus has decreased sharply in the last few weeks. I agreed. It was the tutors impression that Maizie is not wanting to work on difficult problems so she is avoiding the work. I did not agree with that. We had taken Maizie off of Strattera thinking it was not helping her focus. Sometimes you have to stop a medication to see that it is working. Apparently it was doing something for her. I had also noticed her not focusing as well with school work and even in playing games, with barbies or whatever. She has been more hyper and less likely to put her words together. Her melt downs have been increasing and my nerves are being shot earlier in the day. Another sign that I usually don't recognize right away. Granted, all of these areas are a struggle for her but in the last few weeks it had been worse.

Add in the increased seizures, a vacation and it is truly hard to tell if it is the medication. My gut tells me she needs the Strattera back so Joe went to pick up a new prescription of it tonight and since it is fast acting I should see an improvement quickly. If there is no change I will have to rethink the medication again. According to the Cleveland Clinic Strattera is the only good option for her low focusing struggles. We had tried other stimulant medications in the past and they caused all kinds of problems.

I know many people out there are against medications. I certainly do not fall into that category. We had tried many alternatives when Maizie was younger with no improvement. It was only when we stopped Maizie's seizures with medication and then eventually added in a stimulant that she was able to focus to learn at all. Some days I feel guilty for the medications she is on but mostly I feel thankful that we have the ability to pay for them and that they work for her. I think medications have to be thought out on an individual basis. There is not a one fits all method for children with difficulties like Maizie has. Especially since her condition is so rare we really have no one to make comparisons with. The closest we have for comparison is autism. She fits all the criteria for autism and yet her chromosome disorder plays a huge role in her seizures and physical struggles.

For Joe I think this is hard. He works hard all day and just wants to spend some quality time with Maizie. Often times we are dealing with a sleepy child who just needs to go to bed. I am sure that hits home for most parents. For Maizie though she takes a lot of her aggression and inability to hold it together out on Joe. I suppose this is because he can handle it. I don't know. Joe wanted to play some games and just hang out with Maizie tonight but that did not go as planned. When she gets this upset she will not even allow Joe near her. For some reason she can only handle one of us at that time and it is usually me. In some regards I feel like her melt down is my fault since I really wanted her to get a few more worksheets done in math. Maybe if I had not asked Joe to step in we would have finished it and she would have moved on to playing with Joe. Or I could have accepted what we had all ready accomplished for the day, instead I pushed for more. Possibly the night would have went much better. I am sure I will be having dreams about it tonight or before I fall asleep I will be debating the scenario in my head and how I need to chill and just go more with the flow when it comes to home school. I guess it is a learning process for me too.

Seizures, My Wild Puppy and My Memory Sucks

Maizie woke up early today. Around four to be exact. My sister Marie was giving me a break and kept her over night. She called me early this morning to tell me Christian ran in to get her while she was in the bathroom saying, "Maizie had a seizure!" Of course by the time I got to her house Maizie was begging me not to take her home. She wanted to go to bible study and wanted to go right then and there! I knew my little sweetheart would be asleep again in a short time so I told her I would think about it and we headed out the door. Once in the car she was sound asleep. We got home and she threw a fit about missing bible study. I felt guilty keeping her home but I knew she would not be able to stay awake. She fell back to sleep watching High School Musical. I layed down too and we both slept till noon. I was sooooo sleepy! I think our vacation and this stress just caught up with me.

Maizie was quite needy the rest of the day. She worked on her "dinosaur dig" from the museum. She loved it. Check out her blog for the pictures. I wish I had a huge one here. I think it would keep her busy for hours on end! There has to be a way to mix up this sand mixture on my own and bury different things in it. That would be less expensive than buying a large one I found for $80. Then she painted the dough shapes she made at Marie's house. I feel like we are losing ground with homeschooling work but what can I do? If she can barely stay awake and function I can't force it on her. That just does not work. I squeeze school work in whenever and wherever I can. So far we are caught up on the required days. I hope we don't get too far behind.
By this afternoon I realized I had cancelled tutoring on a day when Maizie did not even have tutoring. I called the tutor back and left a message explaining my moment of confusion. She is no doubt used to my scheduling goof ups at this point. But, today this was a new low. I feel like my brain is just not working that well. I will call someone early in the day and then wonder if I called them later in the day. Or my mom will call and tell me something and for the life of me I can't remember what she said a few hours later. The doctor said this is the hormone changes and it will get better. Lord I hope so! Joe says it is better than chronic pain. He has a point. Today I realize though that I am going to have to begin making lists. I think that will help me remember what needs to be done and what calls need to be made. There are so many different medical things going on that I just can't keep track of it like I used to. I have never had this problem before so it really kinda sucks. I used to deal with all of this, my university classes and then some. Now, I feel like my brain just can't hold that much information. It really freaks me out.

Tonight we went to my parent's house for dinner. They made Maizie's favorite...tacos. We had a nice time. Maizie and my dad played some pool which Maizie loved. I am not sure who won. I forgot to ask. While we were there her neurologist called and we set up a medication tweaking plan for the next six days or so. If it does not work we will do another sleep study/EEG. Hopefully we see some improvement. I really do not want to do another of those tests.

Keeping the dogs separated has been a real pain in the butt. Stella was spayed and acts like a wild puppy even after just having surgery. I guess she is a wild puppy. She wants to play with Darwin like normal and it makes me crazy. I am so worried her incision will rip open. So, I let them play a little and then put her to bed. I can't wait till she can play freely and go to the dog park. Stella totally needs that intensive exercise.

La De Da Day!

Maizie woke me up way too early...but not as early as three. I gave her breakfast, her medications and sent her back to her room to watch T.V. for "just one more hour" while I slept. I had major insomnia last night and could not sleep. It is great that Maizie is old enough now to actually fulfill my request!

I was surprised when I woke up at 8:30 with a stuffed bear tucked under my arm! This was way later than I usually sleep. The house was silent and I was suddenly worried. I went upstairs and Maizie's room was silent and the door was shut. I could not believe it...she must have fallen back to sleep!

I begin my morning chores, shower, eat breakfast, putz online and look at the clock. It was almost 10 a.m. and she was still sound asleep. She had tutoring at 11. It is just unheard of for Maizie to sleep this late. Last week she had her first seizure in a few months and has been a bit up and down in sleep and moods ever since. Maybe she was making up for lost sleep? I really hated to wake her up but tutoring time was almost here.

I quietly opened her bedroom door to find her cuddled up under all her blankets, the t.v. off and she was snoring softly. I decided I better wake her up. I do not like waking her up. I have the belief that if children are sleeping they need that sleep. I had to force myself to do it.

A big smile greeted me. Thank goodness! We got ready for tutoring and headed out the door. She did great, was focused and earned her 600 point prize today. She was so excited.

Next, I dropped her off at my nephew Daniel's. He just took a babysitting class at the Y and was begging me to let him babysit. Not really in my budget for the week...but, hey...twist my arm. I was ready for some fun time! I called up Mindy and we headed out for lunch and my favorite store...(other than, Von Maur) Target.

Mindy and I went to Cheddars. Joe and I love Cheddars and Mindy had not been there for years. We walk in past a large crowd of people waiting to be seated. We see an empty table in the bar and strut right over to it, sit down and await our waiter.

The waiter comes over and says, "Whoa. Did you guys seat yourselves?" Ooops. Are we not supposed to seat ourselves in the bar anymore? Have the non smoking laws changed the restaurant seating rules? Normally, Mindy and I just grab a seat, any seat in the bar. It saves time. Target was waiting! The waiter explained that they have hostesses to seat you. Oh, my...is that what those people are for???

We enjoy our lunch and then head on over to Target so I can stock up on laundry supplies. Mindy begins cost comparing everything with what she could get at Good Will. "I could get one of those for like a buck at Good Will. Did you know you can get laundry detergent at Good Will? I never buy it, I don't ever go down that lane...but you can!" I was cracking up inside. Yes, Mindy...I will try Good Will soon. You just have to teach me how to look through a rack of clothing for one hour to find one good deal! I don't know how you do it. I think you are blessed with a "good deal gene", a quality I never have possessed.

I can usually get screwed purchasing anything from groceries, cars, pets with severe mental issues and even makeup. Okay, I admit the makeup is totally my fault. I am a makeup snob ever since managing Lancome. I can't help it. I notice a real difference between brands. I really do. And thankfully, Joe understands this little addiction of mine and is willing to sacrifice many hours of his work to pay for my Estee Lauder Day Wear lotion and my must have Clarion foundation. Oh, and most recently my Chanel lip gloss that I lost on my trip to Indy with Susie. I grieved hard when I lost that. I think Susie thought I was really disturbed. I could not stop talking about the gloss. However, Susie asked her mom to get her Chanel Spark (my favorite) for her birthday. Susie did get Spark for her birthday and now she can truly understand my loss.

After my shopping and gab fest with dearest Mindy I went and picked up Maizie. Negotiating the babysitting price with Daniel was an experience. He insisted on being paid by check and made me promise to hire him again. If he could drive I would just have him move in with us and be our personal 'manny', house cleaner and landscaper. Bummer.
Once home Maizie and I found our neighbors car parked in the middle of the yard, next to our sidewalk again. I took the photo above yesterday, today the car was even closer to our house and right next to the sidewalk. Okay, I can not fully put into words how frustrated this made me. I had another million thoughts about what I could put into the windows of his car. I went in, got the dog poop bag and began picking up dog poop outside. As I am standing right next to his shell of a car I was really tempted to chuck a few turds into the car. But, that nicey nice part of me took over and my arms became paralyzed by the idea.

So, I called the landlord instead and asked if they could keep their tenants from parking in the middle of the yard. The good news is she said she would call him and the bad news is that they are going to put up cement blocks so no one can park out back anymore. Okay...that really sucks. We use a small portion of their back yard, near the alley to park one of our cars. We probably will not be able to do that for much longer. There will be no options but busy annoying street parking for us. I could feel the rage and frustration building within me. It took all of my strength not to call Joe and insist on moving us out of this house immediately!

I mumbled a few not so nice sentences and Maizie heard and said, "MaMa we can't move. I want to live here forever and ever with you and Daddy."

I smile and nod as I toss the poo bag into the trash.

Inside, I give Maizie her surprise from Target. I went out on a limb and bought her a cheap pair of flip flops. Maizie is nine and has never been able to keep a pair of flip flops on her feet. Walking in them was always impossible. She often drooled over seeing other little girls in cute little flip flops. She takes after her mommy in the 'shoe fetish' department. We can waste an hour looking at Zappos.com together. I pulled out the flip flops and Maizie said, "But Ma Ma I don't know how to put my toes on that thing!" I helped put on the flip flops which was way more difficult than I thought it would be. She kept curling her toes and pushing against me. Finally, they went on and they are CUTE. She lights up like a Christmas morning and proceeds to walk normally around the kitchen! Yes! My little girl is growing up! She can wear flip flops now. We both celebrated with a picture and lots of hugs. Zappos here we come!!!!!!

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.