Guinea Pigs, Ensure & Mashed Potatoes All the Time

Last weekend we had the honor of being invited to a very special birthday party for a little sweetie pie named Louie. Louie is the guinea pig above, being held by his loving Chloe. Sometimes you just gotta come up for reasons to have a party. Chloe and her mom Susie went all out for Louie's one year celebration. Of course we had to bring Salem (in the middle above) and Zebra (on the right). Maizie dressed them in their finest gingham dresses while Louie greeted us in his hot jungle gear. Louie did the 'Jungle Boogie' quite a few times while playing with Zebra and Salem and had to be removed from the play area to cool off. Later for cake and ice cream Louie changed out of his jungle wear into his Cowboy gear. He was looking good. Zebra really took a liking to him...except once the food was brought out for the piggies she pretty much forgot all about Louie.Now really, have you ever seen anything so adorable? We just love our little piggies.


Now on to part two of this post. Braces don't mix too well when a child already has sensory issues relating to food. Well, maybe it is not the braces so much as it is the expander. Crap! I just realized I forgot to turn the little crank on the expander again tonight! Ahhhh!

Okay. Getting back to the subject here. Maizie is having a very difficult time learning to eat with the expander in. The two times she has tried to eat food with real substance she panicked. Once the food was stuck at the roof of her mouth she could not focus on anything but getting it out...immediately. One of her teachers at the Center had an expander when she was a kid and said that you kinda have to suck the food out at the top. She explained that food will just keep getting stuck up there throughout the meal. Maizie does not have the patience or maybe a better word would be tolerance for that.

Immediately she runs to the bathroom screaming and crying, insisting I get the food out immediately. Next we spend thirty minutes in the bathroom picking out the food with a special tool the orthodontist gave us. This does not go well. I feel so sorry about the whole thing and wish I could find the right words to explain how to deal with the expander.

The other night I picked up Pineapple chicken at Maizie's most favorite Chinese restaurant in the world. She loves pineapple chicken. This was the meal that encouraged her to start eating again the last time she was hospitalized for her CVS. If anything would encourage her to tolerate food in the expander this feast was it.

We brought the take out home and Maizie was feeling positive. I sat next to her, encouraging her through each bite. She ate quite a bit and seemed pleased. We were on a roll. After a few bites she ran to the bathroom. I tried to calm her. I asked her to consider just leaving the food in the expander and eating some more. Nope.

I acted out a few different ways for her to get the food out. No go. She was angry and insisted she was never going to eat anything again. Here is what she said between sobs and spits of food as I worked diligently to dislodge it, "Mom....I am only going to....eat.....mashed potatoes...and Ensure....don't EVER....make....me eat...anything else...ever again!"

I am hiding protein mix in the mashed potatoes and on a whim I picked up some Ensure the other day. It was a long shot. I told Maizie that Ensure was a great drink that would give her lots of energy for school.

Amazingly enough she said, "For school...it will give me energy? I'll drink it!"

I about passed out. Knowing she is drinking the Ensure allows me to rest a bit easier since eating has become so difficult. The last thing we need is dehydration and an extended CVS bout. Not eating well does not help with CVS. With the stress of her new schedule and braces she has had two CVS bouts in the last two weeks. The Autism Center was still doable since her episodes were in the morning and school is scheduled for after lunch.

Despite it all she is proud of having her braces and is loving the Autism Center.

Tonight Maizie had more energy than she knew what to do with. Finally I cracked and said, "Maizie...please...please be calm!"

Maizie bounced over to me, held my head between her hands with great force and said, "Mom! You gave me too much Ensure! That's why I can't stop!"

Moving At A Snails Pace with Cyclical Vomiting Syndrome

Last night I threw some lettuce and carrots in for our snails and found myself staring at them for over an hour and a half. Either I really am that tired, there was nothing on television, or my little friends were helping me relax. I had no idea time was passing. I found myself saying things out loud like, "Oh...my...God! That is so weird." "What the hell is that?"

Just when I was starting to adjust to Maizie being out of the cyclical vomiting cycle it hit again. Last week she had one day where it hit. Yesterday it happened in the morning but she seemed fine by one in the afternoon. I had a meeting at church and Chloe was wanting to have Maizie over to play so I was happy to oblige. Susie is feeling a bit better after her surgery and was certain she was able to watch Maizie. About forty minutes after I left Susie called and told me Maizie was sweating, out of it and in a lot of pain. Big sigh. Two episodes in a day was not a good sign. I always leave Maizie with her Kytril and Zofran. Susie is great with Maizie. She gave her the medications and assured me it was okay to finish the meeting.
When I returned Maizie was perking up. Chloe was about at her witts end having to wait for so long to play with Maizie. Finally, the girls played. I enjoyed pizza and hanging out with Tim and Susie. With Joe off in California it was so nice to visit with friends. I was beyond surprised when I looked at the clock and saw it was almost eight at night when we left. When the CVS strikes everything slows down to a snails pace. This morning I was hopeful when we reached ten and there was no sign of the CVS monster. Within minutes of feeling this hope Maizie looked at me and said, "I am sorry to say this. My belly hurts." Sigh.

The pain Maizie had today was intense. I called the neurologist and she increased her Topamax by starting a morning dose. Yes, we are still trying the Topamax. It seems that we are having some success with it since she is not vomiting as much with the spells and they have been less frequent. I really don't know for sure if it is the medication helping.

By four o'clock today Maizie began feeling better and wanted to leave the house. We headed off to the dog park. It feels as if Maizie and me are moving in slow motion. We get a little bit ahead and make it to the surface...enjoy some deep and wonderful breaths and then fall back to the bottom again. It reminds me of the snails slowly making their way around the tank. At the top they take in air and without notice they quickly float to the bottom again. But, I will say they do so with beauty and grace. And so we try to do the same.

“In philosophy if you aren't moving at a snail's pace you aren't moving at all.”
Iris Murdoch (British Novelist and Philosopher, 1919-1999)

"Time sometimes flies like a bird, sometimes crawls like a snail; but a man is happiest when he does not even notice whether it passes swiftly or slowly."
Ivan Turgenev (Russian author, 1818-1883)

Do You Like Change?

Our mornings still begin like this....Lil' Miss Maizie is sound asleep under that blanket after the usual morning CVS episode. We are frustrated and at the same time this "monster" illness has become a part of our routine...a part of our lives. A combination of intense belly pain and head pain over takes her.

I am praying she out grows this soon. Most children do. And then again Maizie is not like most children. It has been a little over a year since our trip to the Cleveland Clinic in Ohio. It is very possible we will be going there again.

The picture below is how Maizie looks by six at night. We went out to dinner with Rod and Rhonda and she was able to see her little friend Madelyn. Madelyn and Maizie were discussing adoption together. Since they are both adopted they tend to bring this up whenever they see one another. Maizie asked me what her birth mother did to take care of her when she was a baby. I explained that her birth mother ate healthy foods, listened to country music (obviously this is where Maizie gets her love of Dolly Parton and all things country) and prayed for her and us...a lot. Madelyn likes to point out that she is from the Philippines and Maizie is not. Sometimes it seems there is a little competition between them on who has the most unique birth story. The two of them never cease to amaze me when they bring up adoption.

Maizie has been loving her new MP3 player. She wears the big ol' headphones because they, "feel good". It is quite entertaining listening to her sing as I drive. I especially like the quiet time or being able to listen to my own music.
I sure do appreciate the comments about my new hair do. It has taken some major adjustment. Every time I look in the mirror I am like, "Gadz!? Where is my hair?" It looks quite different to me. I don't know how long I will keep it like this but for now it is fun having a new style to work on in the mornings.

I am all for anything different right now. Yes, it totally clashes with what Maizie wants. That is the struggle. I like changes. The way our day is laid out right now about sends me over the edge sometimes.

I enjoy new challenges, new places, rearranging furniture and spur of the moment get togethers. These things don't seem to go with Maizie's personality very well. If anything..my need for change and the fact that I don't fear it has probably come in handy in dealing with Maizie's ongoing and ever changing health challenges. Accepting change has come in handy when it comes to her education techniques, therapies and social struggles. I am much more willing to move on and try something else. I figure God is trying to teach me patience and how to enjoy the tiny...the subtle, more dazlious moments in my life.

Does your child with special needs like change? Do you?

Fun Friday and CVS Saturday

Yesterday Maralyn spent the day with us. Maralyn was wide awake and ready to go at 7:30 a.m. Maizie came down shortly after she arrived. After eating breakfast they played the computer together. Jeff Corwin online puzzles is Maizie's latest obsession. She loves putting the puzzles together. Maralyn was interested for a little while and then I set her up on her own computer to give the puzzles a try. Maralyn is five years old. I was wowed with her abilities. All day she was surprising me with her reading and writing skills. She also has great "cuddling with the guinea pig skills".

By noon Maralyn was very antsy. Maizie was making a little progress and was almost ready to start the day. Maralyn said, "So....are we just going to sit here all day?" I assured Maralyn we were not going to be sitting all day but that Maizie did need time to relax in the mornings. I am sure that is hard for another child to grasp. Why would Maizie want to do practically nothing when the sun was shining out? Maralyn even went to the front door several times hinting, "Marla...it really is a beautiful day out."

I made the girls lunch and by one o'clock Maizie was ready to leave the house. Maralyn has always wanted to go to the dog park with us. Luckily, I bought our memberships just a few days before. The dogs have been in heaven. Maizie too. She is in her element at the dog park. Maizie asks every owner the name, age and breed of their dog. Her memory for dog names and breeds is amazing. The girls were able to run around with Stella and Darwin for quite a while. When the park gets busy I make them sit on the picnic tables and observe. After all, the park is for dogs...not little kids.

I asked Maralyn if the dog park was everything she dreamed it would be. She just giggled so I am not sure what she thought of it. Maralyn is a dog lover so I assume she enjoyed it. After the park we brought the dogs back home. After I put Stella to bed I came into the kitchen and found the girls laying on the floor with Darwin. They were all exercised out!

Their exhaustion did not last long and the requests for a second lunch began. Hmmm....I really needed to go to the grocery store. Our lunch choices were quite limited. Burger King had the new Sponge Bob toys so off we went. The girls worked together on the Burger King activity sheet. That killed about thirty minutes. Which was nice. From there we went to Fresh Market where I splurged on some beautiful rib eye steaks for dinner.
Mindy and Maralyn stayed for dinner. Joe began the meal but had to retreat to his dungeon office for a conference call. Mindy nervously finished grilling the steaks. Joe prefers to prepare dinner all on his own. Mindy felt the pressure. She did fine. The steaks were delicious.

This morning Maizie was in a very bad mood. Every little thing was upsetting her. Joe took the dogs to the dog park in the hopes of wearing them out for the day.

Maizie fell asleep on the chair but within minutes I knew we were in trouble. Moaning in her sleep is a big red flag for a CVS attack. Before I knew it I was running for the Sick Bear Bowl and once again we are in the middle of a bad episode.

Tonight is the baptism of baby Archer. Maizie wanted so badly to go and at the same time I know she is nervous about the event. Sean and Carol are understanding and agreed we did not need to stay for the hour long service which would have totally put Maizie on edge. Now, I will more than likely need to ask a friend to stay with her tonight. That is several hours from now but chances are even if she feels better the stress of the event could cause an episode at the baptism. Sigh....and sigh again.

More Med Tweaking and A Belly Cozy from a Blogger Friend

Nothing much has changed. Our days begin to get really good about two in the afternoon. Until then Maizie continues to spend a great deal of time hiding under a blanket. Seeking shelter from the sun is her main objective.

Today we went to the neurologist to further work on tweaking her cyclical vomiting syndrome medications. Over the weekend we noticed major changes in Maizie's ability to control herself. She was easily angered and cried uncontrollably for no apparent reason. The hitting returned. Maizie has not hit for years so that was a shock. We had begun reducing the Lamictal so it was quickly apparent we need to go back up on it. The medication was used for what we thought was the seizures for the last few years. Since we began Lamictal Maizie's ability to focus and relate improved dramatically. We were not certain if it was from the Lamictal or from catching up some developmentally. I am sure it is a bit of both. However, considering the rapid decrease in her ability to communicate and increased depression over the weekend we knew something was not right. The Lamictal seems to be very helpful for Maizie to feel happy and able to communicate.

We raised her Lamictal back up and within a day she was feeling much better. The Topomax may be doing something since she has not vomited for quite a few days. She still does not feel well in the morning though and the triggers Maizie has discovered bother her as much as ever. The neurologist raised her Topomax slightly at our visit today thinking that will help her feel better in the mornings since she is at a very low dose. I certainly have my doubts about this but we have to try it. Once the Topomax does not work that will be two CVS/migraine medication trials and there are very few left. The doctor reminded us that because of Maizie's chromosome disorder the CVS will look differently. Please read this post titled A Diagnosis that explains more about Maizie's Chromosome Disorder.

Maizie's anxiety continues to be intense. She is working extra hard to control her environment which I certainly understand since she has been sick for so long. I must say that her need to control everything has become exhausting.

The nights are still her best time. Tonight Joe and Maizie went to see Horton Hears A Who. Maizie has been wanting to see this movie since she heard of it's release date. Maizie has very little concept of time but she loves talking about the release dates of movies. It is very cute.

Tomorrow I am watching her little friend Maralyn all day. That should make for an interesting time. Maralyn seems to be understanding of Maizie's need for alone time and is willing to entertain herself if need be. Mindy is dropping her off earlier than I ever consider waking up. Lord help me! I best get to bed early tonight.

Tonight I got a special message from Jacqui. Jacqui is a beautiful little girl who wants to help her mom make a hot water bottle cozy for Maizie. Both Maizie and Jacqui have cyclical vomiting syndrome. During the bouts they both suffer excruciating belly pain and holding a hot water bottle against the belly helps a bit.
Jacqui is so sweet to think of Maizie! If you have not visited In the Life of a Child please stop by and wish Jacqui well. She is in the middle of a CVS bout right now. We love you Jacqui! This is one of the many reasons I love blogging. If it were not for modern technology I know we would feel so totally alone in our struggle to help Maizie with her CVS. Jacqui's mother Michelle has offered me many tips and comforting words since learning of Maizie's diagnosis. I am truly thankful for her sharing their story.

Maizie Springs Back for the Day....Crossing Our Fingers it Lasts

Today began on shaky ground. Maizie woke up at 4:30 a.m. after having a nightmare in which Joe was taken away by ghosts. By eleven she was willing to go on a few errands. I tried not to get too excited. She happily went to the video store and out to lunch.

The rest of the time Joe and I took turns waiting in the car with her while we went on a few errands. We felt lucky that she was willing to leave the house so early in the day, even if I did spend a while chilling in the car while Joe shopped for a cake pan.

Maizie enjoyed drawing on napkins while we waited and insisted I give each creation its proper praise. As I sat there watching Maizie in the rear view mirror it slowly dawned on me that she seemed different today. She had a spark I had not seen in weeks. Her sunglasses sat on the seat next to her and she was not screaming at me to take her home so she can hide from the sun. I cautiously invited her friend Maralyn over for the night.
We walked the dogs to the park and Maizie was climbing and running! She did not complain of leg pain, the sun or the sounds of the neighborhood kids playing basket ball. I soaked it all in.

Here she is showing off for the camera. Maizie insisted on her shades as a preventative measure. Good idea! Look how she is full of energy. No belly pain, no anxiety or aggression and no depression! All smiles! Yes! I was in awe.
Once back home we colored Easter eggs.
Maralyn ran into a bit of trouble with the blue Easter egg dye. She must have washed her hands ten times tonight in the hopes of removing the dye. I told her dyed hands are a sign of creative energy...that she was a true artist. Maralyn was not impressed.
The girls enjoyed a yummy dinner, popcorn and the movie Enchanted. Now...they are sound asleep. Dreaming about the Easter Bunny. A day to celebrate! Joe and I are holding our breaths and praying that it lasts.

String of Days with my Chronically Ill Child

Do I ever write anything exciting? The last few days are like the long string of days before it. Maizie wakes up, Maizie is pale, sickly, tired, she sleeps or does not sleep, her moods are up and down and up and down, she works a puzzle, I do some cleaning, read some blogs, make phone calls, play with the dogs, walk the dogs, take a nap, give Maizie her medications, debate if she needs her CVS medications and ponder if we will be able to leave the house, Maizie gets emotional again and begins to yell, the dogs go crazy, Joe comes up from his office looking at me like I need to take control of the situation and all I want to do is go back to sleep on the couch and forget about this day...this string of long days that never seem to change.

We made it to Susie's house on Wednesday. Maizie brought a book all about baby animals and before I knew it she was sitting all cozy next to Susie. Together they read the book,page by page. You can see Chloe examining her nails next to Susie. I am sure Chloe was thinking, "Hello! I thought Maizie came to play with me?!" After Maizie had her cuddle time with Chloe's dog, Boomer they went off to play Barbies.Last night I went to the mall with Janeen. I began to feel frenzied. I was out of the house! I was shopping! It was as if my brain was saying, "Must keep shopping while you can!" If I had the money and the time I probably would have purchased a whole new wardrobe, new shoes and whatever caught my eye. But, I did not. Instead I bought a Build A Bear Karate outfit, glasses and bear diapers for Maizie that will be from the Easter Bunny. Now that she can finally manipulate the clothing to dress her animals she is obsessed with doing so. I love watching her dress up the animals in cute outfits and parade them around proudly. I especially love it because for most of the time she is sitting in her chair looking comatose.

We are at a complete stand still with raising the Topomax. It is clear the Topomax is causing major aggression and depression. I called the neurologist and we are raising her Lamictal back up and keeping the Topomax the same until we see her next week. Argh. My instinct is the Topomax is not going to work. Considering how few migraine medications we have to choose from the neurologist is insistent we try it longer.

A few minutes ago Joe approached Maizie with a hair brush, encouraging her to comb through her wild unbrushed mane. He wants Maizie to be up and around, doing something...anything. Joe says, 'I thought maybe if you brush your hair you might feel better." Maizie began to scream and push the brush away. Sigh. Some battles are not worth fighting. I took this picture just a second ago as she was insisting, "Don't look at me! I want to do a puzzle." Puzzles seem to be the only thing she can focus on right now. At least that is a good brain exercise.On Wednesday we managed to go for a walk around the neighborhood. Maizie loves walking the dogs with the coupler. I see dog training in her future.So...la de da, here I sit with Darwin. Blogging another blog as Maizie quietly works on her fourth puzzle for the day. Sigh. I have been getting out more with friends which is nice. I would really like a weekend away. I sense one will be in my future soon. Easier said than done when you consider the anxiety Maizie experiences whenever I leave the house. Some days you have to judge whether or not time away is even worth it. Any one who has a child with a very rare chromosome disorder (Duplication of Chromosome 6 at sub-band 6p25.3),Autism and severe anxiety that is followed by bouts of cyclical vomiting syndrome knows exactly what I mean.

Dragonology and Ongoing Cyclical Vomiting Syndrome

Tonight was another night hanging out at the book store. We arrived about eight and stayed for almost an hour and a half. Maizie found a book called Dragonology that she fell in love with. A map detailing where the different dragons originated held her attention for quite some time.Here she is reading the names on the map to me.
She began asking me why we never see any dragons around our town. Hmmmmm.....I wonder why? I asked her if dragons were real and she took a very long pause and said, "I do believe in dragons." Then she cracked a big smile and we both laughed.Below there was a spot on the book that was supposed to be dragon scales. This amazed her. They were so real!


Apparently she lost all belief in dragons when she saw a drawing depicting a mother dragon breathing fire out her nose across the eggs to keep them warm. As you can see from her expression she thought that was quite ridiculous. Her final words, "Dragons have fire in their noses? Yeah...right!"

Not much has changed with Maizie's health. We had to call the neurologist Saturday. Maizie was in terrible pain on Friday night and was overly emotional and impulsive most of that week. By Saturday morning it seemed as if she was beyond miserable. The Topomax has been decreased and we are going back up on it much slower. I will say that her cyclical vomiting episodes are shorter and not as intense but are still happening almost daily. The neurologist wants to give the medication a good trial period since there are not that many more to chose from. I have been getting a few e-mails from other CVS families. One mentioned having success with a nose spray their doctor prescribed. I am going to mention that to our doctor soon.

Saturday night Maizie had her little friend Maralyn over while I went out with Mindy. This lifted her spirits immensely. Sunday she went to Mindy's house while we went to explore our dream house. She was pale and quiet but seemed to be doing okay. Today she told me she lied and was really feeling pain all day Sunday. Maizie explained she thought we would be sad and mad if she was sick again. Needless to say we are continually confused. Maizie's ability to understand and express her pain has always been challenging.

At eleven this morning I thought we were making progress when Maizie agreed to go on an errand with me. After about five minutes picking out Easter cards together she suddenly stopped and insisted we had to leave. Her belly hurt and she put her hood up over her head and began yelling about the lights. Sensitivity to lights is becoming a big problem. It is a good thing we home school. I don't know how she would ever survive the school day.

I asked Maizie what she would like to do tomorrow. She looked at me and said, "We will wait and see." Too much waiting and watching. Why won't it just stop? It fills me with doubt and frustration. I can only imagine how it makes Maizie feel. Jacqui is struggling with another CVS bout as well. Please keep Jacqui and Maizie in your prayers.

Ten Year Old with Cyclical Vomiting Syndrome Goes Out on the Town!

Today began like every other day since January. Maizie and I sat around. She worked a puzzle while I waited and "watched". Her belly began to hurt by noon. She took her medications and we both napped. Once awake she looked like a different child. I cancelled her hair cut appointment early on in the day. I sadly admitted to myself that there was no way she was going to leave the house yet alone tolerate a hair cut. I need to make arrangements for a hairdresser to visit the house. Joe calls this phase of hair growth the "helmet hair". It is not pretty.

When asked if she would be able to leave the house today she responded, "I'll think about it." Gee...I wonder where she heard that from? After four days of being in the house I was encouraging her all desperate like to venture out! Dinner time rolled around and she finally agreed to dress. After making sure the sun was down she said yes to Target. Thank you God! I tried not to get my hopes up since the night before she had wanted to leave and just as we headed out the door she said, "Mama...I just can't do it." I wanted to scream.

Maizie created a list that said,'Rescue Pet Get It!'. Needless to say she left Target with a Rescue Pet. May I briefly mention that I think they are creepy. You can set them to be a sad dog or a happy dog. The premise is that you are rescuing the dog or cat...a stray. I don't know how to explain quite yet why they bother me. My brain is fried. Oh, well. She likes it. Any motivation to leave the house is good. At this point I would have agreed to any ol' thing she put on that list just to get her dressed and out on the town!

After Target we ate dinner at Cheddars. Yup, we were pushing our luck! Pushing Maizie too. I gave Maizie a Zofran right after sitting down. It seemed to help her. Making it through a dinner in a restaurant was nice! Very nice. Joe mentioned visiting Borders after dinner. Maizie had begun licking her mouth excessively since we left the house. A sign of anxiety. She explained that Borders is "not her favorite" because there are too many kids in the way. I assured her that being a school night the children's' section would be empty. Thankfully I was right! As you can see from the photos Maizie made herself right at home reading Snog out loud. Possibly, this successful trip out of the house will boost her confidence and she will be less fearful of becoming sick from outside triggers.

Joe and I took turns browsing while one of us sat with Maizie. We left Borders at eleven o' clock. Eleven o' clock at night! Did I mention we were out of the house with our ten year old until eleven o'clock at night on a 'home school night'? Unbelievable. Granted, home schooling is done mostly at night now. I want to get advice from the families who have children who are allergic to the sun. I think they may be able to give me some pointers on our new lifestyle. Seriously.

Insurance and A Not So Good Anniversary Date...of Sorts

Today we went to see the neurologist...again. Maizie begins weaning off of Elavil which has brought no relief and is slowly beginning Topomax. Meanwhile, we are weaning her off of the seizure medication, Lamictal which she has been on for a couple years. I have four different medication sheets the neurologist created for adding and weaning the medications. The Kytril and Zofran needed to be refilled also. Kytril is expensive. Very expensive. Once again, we are thankful for our insurance. Kytril costs over a thousand dollars for a month. It is costing us a mere ten bucks. One thing I can say for certain...we get our money's worth out of what we pay for our insurance coverage.

Our neurologist is out of network so Joe is having to mess around with the insurance company. Since we began seeing this new neurologist we owe close to seven grand. This is just since January. Doctors sure do charge a lot for hospital visits. Ugh.

I am so thankful for Joe handling the insurance stuff. I handled it for the first eight years of Maizie's life and about cracked up. Of course back then our insurance did not cover the majority of her medications or doctor visits because it was always classified under mental health care...of which we had no coverage. I had to fight almost every claim we sent in. Some we won and others we did not. I am convinced that some insurance companies know they can wear you down and count on the fact that you will eventually give up fighting certain claims.

We tried to sue our first insurance company and a hospital once for refusal of coverage. That was a waste of time. The hospital we had to use back then had some sort of agreement with the attorneys in the region making it against their best interest to sue for us. We would have had to go to Chicago to find a lawyer.

You reach a point where you have to decide what fights are worth the effort and money. Considering what little energy Joe and I had back then we decided to grit our teeth and pay the hospital bill that insurance refused to cover. I have never been so angry writing out a check in my life. What made it worse was this particular hospitalization was a time when Maizie was very sick and behaviorally out of control. She was vomiting constantly, rarely slept and was emotionally out of control. The nursing staff accused us of dropping Maizie off so we could get a free vacation. Can you imagine? I made a point to stop in and check on Maizie all the time. We were not allowed to see her all the time since at that time she was in a psych hospital. The doctor visited all the time too. At one point the doctor showed up in the late evening and found out that they had refused to give Maizie her bedtime medications and were instead using a holding technique to "force" Maizie to sleep. This technique involved a male nurse holding her down until she cried herself to sleep. Instead, she just vomited all over her self and became more out of control and fearful.

The next day the doctor told me this and I immediately went to the hospital to take her home. We did not want her there in the first place but it seemed like we had no choice and the doctor was assuring us she needed to be observed and we needed to sleep. Needless to say neither of us slept, we just cried. The hospital staff wanted her to stay and tried refusing her release. Finally, we took her home. I called a few days later to request a copy of her file. Can you believe it went missing? No record of her having ever been there. Except for the bill, of course...oh and the sheet we signed promising we would pay if our insurance refused coverage. Hmmm....possibly that is where my mistrust of hospitals began. This is one reason we do not leave Maizie alone...ever...while in the hospital. Granted, psych hospitals are different. Hopefully we would never need to do that again.

Soon we are coming up on a anniversary date I rather not remember. The day our adoption agency removed Maizie from our home and placed her in foster care due to a adoption reversal threat. The birth father wanted her back and suddenly we had no say in the placement of our daughter to be. We did manage to secure a lawyer for this nightmarish experience. I had called several lawyers and all refused to take our case except one. I heard this statement a lot, "Unless the birth father is the devil himself you don't stand a chance at getting her back." We surrendered the situation to God. We have love for both birth parents. Maizie's safety was always our first concern. We insisted that he be investigated and a court appointed lawyer represent our daughter. This lawyer was known to be a 'barracuda' when it came to representing children. She stood up in court and said, "Over my dead body will this child ever be placed in the hands of this man."

The judge listened and within a few hours we were called and asked if we wanted to adopt Maizie. At that point she had been in foster care for three months and we were unable to see her. Needless to say we were thrilled.

Our adoption story is a lot more complicated than I even describe here. It was a long, stressful devastating and amazing experience all rolled into one.

I am not one to focus on a date and make that day miserable for the rest of my life. But, the date this happened is one I think of every day of my life.

Joe and I talk about adopting again and this experience always comes up. It is hard not to fear a similar situation. We both feel like it was a miracle we survived. And by a miracle I do feel without a doubt that God was the one to pull us through. When we surrendered and put Maizie into God's hands I felt such amazing relief. I knew that whatever would happen I would survive and Maizie would be where she was meant to be. Some may think that is easy for me to say now since it worked out in our favor. Maybe it does make it easier? Even still...not a day goes by where I don't put Maizie in God's hands. He created her and knows what we need to do to help her. He pushes us to move forward and keep working. I find comfort in that. I feel stronger for that. It works. If you don't believe it I dare you to give prayer a try. If not...that is cool too. We each come to things at our own time and in our own way. If anyone is teaching me that it is my daughter...Maizie.

Down hill we go...if we were even ever going up?

Today started out the same. Maizie prepares by putting on her sunglasses and waiting for it to hit. In the picture above she is actually sound asleep after the attack.

I guess we were feeling overly adventurous and made plans to meet our friends for dinner at Mi Pueblo. Maizie seemed well and put on her new dress and her Hannah Montana earrings. She even requested a little blush for her cheeks.

We were looking forward to a night out of this tiny house. We arrived and began talking with our friends. Maizie worked diligently on one dot to dot waiting for the little kids to arrive. Only about five minutes passed and she pulled me close to her and whispered, "My belly hurts." I took her to the restroom where she became very angry and insisted we leave at once to go home and get her medicine. Maizie is convinced the smell of mexican food triggered the episode and insists we never go to my favorite restaurant again. Can you hear me screaming?

I slowly walked back to our table. I felt like someone slapped me in the face. I had to tell everyone we needed to leave, that Maizie was having an episode again. We paid for our barely sipped on drinks and went home. Once home Maizie requested her pajamas. I left to run errands and within a few minutes Joe texted me that Maizie was vomiting. I was crushed. I am so beyond crying though. It reaches a point where you just don't cry because once you start you can't stop and worse...you know you will feel like crap the next day because of it. So...I don't cry and I don't wallow in it. It is just our life right now. It sucks though. I move back and forth between anger and overwhelming sadness. Thank god for my antidepressants or I would be a mess.

We called the neurologist and were given the go ahead to give Maizie the medications again since she vomited them out. The neurologist freaked Joe out by mentioning needing to go to the hospital. She agreed to wait until morning and see how Maizie is doing. The vomiting was relentless. After losing another pill she layed and moaned with pain. I gave her the third pill and prayed she could keep it down. Success! The vomiting slowed and she gradually began to be more coherent.

Now, we are watching The Jeff Corwin Experience...Maizie's new obsession. We are in for a long night of insomnia. Wahoo! Despite it all she takes it in stride. Possibly because she knows little else? Can you hear my heart breaking? Thankfully, when she is well we are able to drop everything and make the best of it.

Our Schedule...New Family Members

I have been waiting to give an update on Maizie. Figuring out our new "schedule" and what is going on with her health has been a tad difficult to say the least. The good news is the vomiting, for now...has ceased. The bad news is that she is having just two healthy days a week. The rest go like this....

Wake up around anywhere between six and nine.
Try to eat breakfast.
Watch some television.
I wait and watch for the "signs" which are dizziness, eye blinking and insisting I "turn off the sun". She slides under the big blanket and covers her head. Everything has to be turned off. No television and no lights. The house goes silent.

By ten I will usually know if we will have a functional day.
If the day is not functional I proceed to care for Maizie by giving her the medications to stop the pain in her belly and hopefully stop her from vomiting. I continue to "wait and watch".
Maizie will sit very still and looks miserable, if she is lucky she falls asleep and wakes up later around three in the afternoon.

Once awake she looks like a totally different child (a healthy one) and will say, "What are we doing today?" She never seems to understand that most of our day is gone at this point.
If we can I take her out in the evening. We have begun setting up a few more get-togethers at night for play and dinner with friends. Most evenings though she is content to stay at home and lacks the energy needed to go anywhere. Did I mention she can't fall asleep at night either? So...the evening hours are going way into the night. Even on days when she does not need to nap she will be up struggling to fall asleep until about midnight.

We are still in the tweaking phase of her mew migraine medication so I am trying to keep hope that our lives will continue to improve.

I figured out today that if we had a conventional school year she would have missed over fifty days of schooling since the fall. Ugh. No wonder homeschooling is our best option.

Sunday Maizie was invited by her friend Chloe to visit Science Central. I was so nervous all morning. Maize had a mild "spell" at ten, I tweaked her 'as needed' medication in the hopes that she would wake up sooner and be able to go. I waited until the very last minute and woke her up. Waking her up usually is a disaster in the making. More than anything I wanted her to be able to go out with a friend and have fun! I kept telling myself I would be more upset than Maizie if we had to cancel. I could not stand the thought of Maizie being sad over missing another outing. I do think this lack of activities is harder on me though. I go stir crazy and still have a very hard time dealing with always having an unknown schedule.

I woke Maizie up at twelve thirty. Chloe's parents were going to pick her up at one o'clock. She was slow moving but managed to get dressed, eat some grapes and decided she would go to Science Central. Susie, Chloe's mom reported that Maizie had a few challenges but over all the trip went well. I was so happy!

There has been a couple of new additions to the family. For months Maizie has been filling my phone with You Tube videos of guinea pigs. I was trying hard to ignore her constant pleading for a pet guinea pig. Finally, we gave in. Meet Maizie's new cavies....Zebra and Salem! Getting used to having two guinea pigs to care for has been a challenge. Darwin, our shepherd loves them. He wants to clean and cuddle them constantly. Stella just wants to eat them! Maizie has had a list of new rules to learn in regards to caring for the little piggies.
I must admit that they are the cuddly little creatures I have ever known. Both will sit on your lap for as long as you like. Their little cooing noises are quite comforting. Maizie is smitten with them. Every chance Maizie gets she is holding them, reading about them or thinking about when she gets to hold them next! Below are some pictures of a science project Joe and Maizie are working on. It was great to see Maizie hard at work. Granted, it was night time. But, we do what we gotta do to fit in the learning. Good thing life lends itself to many learning opportunities but structured learning is something we still like to do.

"Kissy Kissy" and Maybe We are on the Up and Up!

My readers are so smart! All three of you remembered my favorite candy! I am thrilled to give the "kissy kissy" award to the following...

1.Angie
2.Melissa
3.Nik's Mom
Enjoy! Please pass it on in the spirit of a, "chaste kiss given to say thank you for friendships and comments in the blogosphere."

Now for an update on this life of mine. Today was the first day we managed to get Maizie out of the house for something other than a doctor's appointment or a hospital stay! Wahoo! It is possible she is at the end of this four week long cyclical vomiting syndrome cycle. I thought it would never end. God willing, I am not jinxing myself by saying we are in the clear for now. This will be the first day where she has gone from looking like this the majority of the day.Both Maizie and Joe were having a hard time staying awake on Friday while we waited for the neurologist. Maizie had been throwing up all morning and could not even walk. Joe had to carry her everywhere. She is not so easy to carry around anymore! Thank goodness Joe is available to help most of the time. We went over Maizie's medications and discussed the tyramine-free diet that she is on. Gradually we will introduce foods to keep an eye on what might bother her. A cycle can begin from stress, the flu, a cold or sometimes certain foods like chocolate. Even though Maizie tested negative for celiac disease and gluten problems we are going to try watching her consumption in that area carefully. There are no guarantees that food will help but it is worth a shot. Notice the big ol' metal bow Maizie has in the pictures.

I found this adorable pink Sick Bear bowl and purchased it for Maizie. Joe and I figured when you have to spend so much time vomiting you may as well have a cute bowl to look at. Maizie loves it.

Hopefully we are on the up and up. Marie and I taught Sunday School today. It is so sad when Maizie can't go to church. I had to leave home with a bag full of craft supplies. For Maizie, missing a craft time is torture! I could tell she was sad she could not go. At the time I left for church she was still in the "iffy" part of the day and we could not risk it. I must admit I was not looking forward to going to church. Explaining what is going on with Maizie is draining. Today, I went prepared. I printed off some brochures on CVS and handed them out when asked about Maizie. Worked like a charm.

Once I came home we all went to Blockbuster so Maizie could take her time brousing movies. She picked out Twitches Too and a Disney movie called Back on Board (something to do with skateboarding). After that we went to the pet store to get a few guppies for the fish tank. Despite being a little wobbly while walking she did great.

Now, we are all cozy at home because it is totally freezing out.

The other night I went out to dinner with Mindy. We had a great time. I so needed to get out! On the way home I drove through one of our flooded downtown streets.
I have never driven through such high flood water before. I figured since the police were pointing the way I could make it through. Considering my sheltered life lately I was quite excited driving through this much water. I decided to pause and see what kind of picture my i Phone would take of the scene. I must say it did an okay job. The river is so high right now I feel a little nervous living where we do.

I hope everyone is having a restful Sunday.