Maizie's First Day at the Autism Center

Wahoo! Can you see the excitement in Maizie's face? Today was her first day at the Autism Center. The first day was short. She decorated her cubicle with a few Jonas Brothers posters, arranged her books and played some games with a few new friends.I took the ol' first day of school photo. Maizie cooperated for the first shot and then began chasing me. Notice the large back pack she picked out. She filled it with her lunch box, a Webkinz and a some knick knacks from her room. I am happy to say that Maizie was told to bring anything that would help her feel comfortable. I love this shot because you can see how ecstatic she is. School today did not begin until three thirty so she was antsy all day. Finally, I took her shopping for new school clothes. A great way to pass the time.

Her normal hours will begin around noon. Wonderful! This gives her plenty of time for her morning rest. If she has a CVS episode we won't end up missing school since they typically occur in the morning. To celebrate the first day we went out to dinner at Maizie's favorite Chinese restaurant. Once home she spent some time with the guinea pigs Salem and Zebra. Yes...those are cute lil' gingham dresses the guinea pigs are wearing. We purchased them for Louie's (Chloe's guinea pig) Birthday Party! Chloe & Susie are planning a kicking party. Zebra and Salem want to look their best.

My Foundation Breaks and Other Stuff

Since my last post my foundation had been shook. You know the feeling? You are going along all happy like and then....boom...something happens and you "wake up". Tears flow constantly and you start to think you are going to crack. The entire time realizing that you are blessed while others are suffering. Suffering through what has been a passing worry for me... a fear that I have pushed down repeatedly and buried far away from my conscious self.

You feel like someone has kicked you in the gut. Everything looks different and more intense. I breathe and do the only thing that feels right. I focus on those I love. Or at least that was my intention. Instead I was cranky and tired from crying and lack of sleep. I took most of it out on Joe and Maizie. In other words I was a mess and behaved like a real bitch to the two people I love the most.

I send prayers for those who have moved on from this earth and that those who love them will be comforted and able to awake in the morning and function a little better with each day. Friday I went over to my mom's to babysit my niece Alex. Before I knew it Maizie was begging to have little three year old Alex spend the night at our house. This would be the first time Alex stayed with us. I was optimistic. We took her out to dinner for pizza and she was all wound up. As always she insisted in sitting next to Uncle Joe. Maizie was easily annoyed by Alex and when Alex left Maizie said, "I am done with that crazy cousin nonsense. I am sorry I made her stay Mom." Hmmm....I am sure Maizie did not mean it like that. Adding an ornery three year old to our quiet abode was a challenge for Maizie and me.Alex cried a bit when she was trying to fall asleep, "I miss my mama. I miss my daddy." Even Aunt Marla can't compare to the comfort of her own parents.

Alex instructed me to pat her back in just the right way. After about two hours she finally fell asleep...next to me...in my bed. Sigh. Joe was forced to sleep on the couch.

Let me just say it has been a long time since I have had to share a bed with a toddler. Alex flopped around like a fart in a frying pan. I was kicked, poked, reminded to pat her back throughout the night and she always had to be holding my hand and a few times my hair. It was sweet and miserable at the same time.

At about two in the morning I heard a loud thunk. Alex had fallen off the bed. Whatever adrenaline was left in my adrenals was used up right then. I leaped off the bed and picked her up with superhuman strength and began patting her back before she realized what happened. Whew. She fell back to sleep and when morning came I woke up exhausted.Alex woke up ready to greet the day! "I'm weady to ged up Mara!" Oh....crap. So soon? Are you kidding me? You want to do what? Hold the guinea pigs now?

Saturday we did nothing. I went to bed early because I looked like crap, my eyes were a swollen mess. The clown look is not good for me at all.

Sunday Ryan and Alison were visiting from Jersey. Ryan was born and raised, like me...in Iowa. Then, like me...he moved to Indiana. He worked for my Dad's company for a while with Joe. I think Joe moved to his current company first, followed by Ryan? I get it confused. Both Ryan and Joe are self taught in network/telecommunications engineering. They are gifted and neither have college degrees. They don't need one. In that field you either have the ability to learn it quickly or you don't.

When we lived in Jersey Ryan practically lived at our house. Making friends in Jersey is not easy so all of us country hicks stuck together. Ryan has toughed it out in Jersey. He tries to convince Alison who was born and raised there to move to the Midwest. Alison sighs and makes a look like she rather be anywhere but in this tiny town. Ryan and Joe are in a field where living in the Midwest is nearly impossible. We are lucky to be living here. Traveling sucks and Joe spends a great deal of his time in Jersey still. Tonight I never heard from him so I am assuming he is enjoying a meal at Good Fellas. Again.

Hopefully Alison and Ryan can come up with a unique compromise that works for both of their careers. Maybe a wonderful cabin like home in the country areas of Jersey. There are some gorgeous areas there. Unfortunately, like we have found out...in the country you can't get good, fast, reliable Ethernet. Argh. Maizie took this picture. Ryan was playing with his iPhone constantly. Maizie was playing with mine. Ryan shared a YouTube video of a girl exercising on the Wii Fit Board. Yup, not quite as "nice" as the guinea pig videos Maizie was showing off. Alison is a very patient woman.

Sunday night we went to my sister Marie's house for pizza and DQ ice cream cake. Yes! We were celebrating Daniel's 14th birthday. I tried to get a picture of Daniel but he refused to smile for any of them. He had a nice birthday. Christian asked me to take a picture of his dirty feet again. Too funny.

A few of you have asked how Daniel is doing. He is doing well. Daniel brought his grades back up and is thinking positively for the new school year. His computer is back and it continues to be somewhat of an issue. Whenever I have been over though he has friends over and they are on the move. That is progress.
Today Maizie and I went to Chloe's house for play and out for dinner. They had fun dressing up their stuffed animals and entertaining us with their dance moves.At dinner they both brought their DS's and "compunicated" before dinner arrived. There was lots of giggling and intense concentration. Ah, the joys of modern technology. Susie and I talked and talked and they were quietly typing away. It was nice, very nice.

Savonna Turns Five

Yesterday we celebrated Savonna's 5th Birthday. She is seen above in a white bridesmaids dress that Maizie passed on to her for dress up play. I was sorry to see that dress go but Maizie insisted Savonna needed it since she was too big for playing dress up.

Maizie waited anxiously for one of her favorite things in the world...a birthday party. She lives for birthday parties, especially the birthday cake. We have been blessed with friends who throw very low key parties....therefore successful parties for Maizie to attend. Since everyone has sensory issues to one degree or another we were all more than happy to help Savonna with the stress of the birthday song. She does not like the loud singing. We all whisper sang it instead. Savonna was quite pleased.

We put together our cooler of drinks and walked the long walk (two houses down) to Janeen and Brian's house. Maizie dressed her Build A Bear Unicorn in a birthday dress and insisted on taking it. She must have had some sixth sense that all of the girls would be showing off their latest Build a Bear creations. Susie's daughter Chloe brought her very first Build A Bear. A stuffed orange cat that has been her favorite. It looks very loved. Brian borrowed a bubble machine from some friends but they were lacking in bubble mixture. I ran home in search of bubble potion. I came back with three small bottles that must have been lacking in potency for the bubble machine. The bubbles that came out were few and far between. The room went silent and Joe spoke, "I have a bubble recipe saved on my blackberry. We can give that a try."

Okay. My husband has a bubble recipe saved on his blackberry? Excuse me if I was a tad shocked. A little confused. Brian was thrilled. It only took a few seconds before they were measuring and concocting what Joe insisted would be the best bubble mixture ever. Joe said he had come across the recipe one day and wanted to try making the mixture with Maizie. I wonder when that was? How long had he saved this magical recipe? Did it ever come in handy at his company team building retreats? Very cute.
The mixture was awesome. The machine was blowing out bubbles like there was no tomorrow. Before long Cindy could not help herself and began looking for various kitchen tools that would work for blowing bubbles. First up, a can opener. Then a whisk. The kids thought this was great. Poor Janeen had quite the mess to clean up later.

Chloe and Maizie Looking Cheeky and Haunted Honeymoon

Last night I could not sleep...again. When Joe travels it never fails that I am up even later putzing around the house or more recently trying to advance in Trauma Center. While I was doing that Joe was playing pool at some bar in New Hampshire.

My lack of sleep was so bad last night that when morning came I was laying on the couch and heard the first chirping of the birds. I finally thought to hell with it and got up. By the time Maizie woke up I was on my third load of laundry. At least when I can't sleep I get a few things accomplished. Well, sometimes.
Chloe came over today while Susie visited the doctor. Maizie was into her morning nap when Chloe arrived but woke up right away. Both Chloe and Maizie were kinda sleepy. Maizie, at first was a major grumpy bug. Chloe was good humored about Maizie's bossy and controlling attitude. Thank goodness. Once Susie returned we went for lunch and shopping. At Ulta Chloe and Maizie were getting all cheeky trying on sunglasses.

Tonight Maizie and I were all kinds of bored without Joe being home. Maizie had a major meltdown last night on the way home form the dog park once she realized Daddy would not be home as planned. It was not a good night. I knew I needed to think of something she would really enjoy for tonight. We took off for her favorite fast food, Taco Bell. After that we went to rent a movie. I wanted the perfect movie for cheering Maizie up. I came across Haunted Honeymoon! A Gene Wilder film.

Maizie has always been infatuated with any film Gene Wilder is in. It always fascinates me to enjoy these movies with her. She is on the edge of her seat and becomes very animated. Possibly it is the over acting that she loves or the dark, mysterious colors? I am not sure.I secretly shot these photos when Larry (Gene Wilder) was being buried alive in an old coffin. Maizie moves between laughter and moments of fear as she takes in the "scare-apy" being forced on Larry.

Maizie has an interesting taste in movies. Fred Astaire is a favorite, she has seen Creature From the Black Lagoon at least a hundred times and Abbott and Costello make her all kinds of happy.

Maizie will be quite happy to see Joe in the morning. I have a feeling we will be watching Haunted Honeymoon again real soon.

Puppy Training 101

Maizie is feeling so much better today. I think the increased Topamax helped. Chloe was able to come over and play this afternoon. Joe came home from California just in time for us to attend doggie training class for Stella. Chloe was quite excited to come along. I think she was a tad bored though. Chloe had one thing on her mind and that was visiting the cats the store had up for adoption from the SPCA.
In the photo above the Bull Terrier is named Boomer, just like Chloe's Boomer. Chloe and Maizie got a huge kick out of that. Stella did a great job waiting for Maizie's orders.

She uses the clicker and says, "Watch me!" Stella watches and waits for her yummy treat!

We all looked shocked when a fluffy mutt who barks continually bit the instructor on the leg for no apparent reason. No blood...but he immediately took the dog for some needed 'one on one attention'. The owners looked horrified. I thought they were going to cry at the sight of their dog being reminded that it was not in charge. They admit their dog has been treated like a baby and has now become a tyrant.

Half way through the class Chloe and Maizie were getting very antsy. Joe took them out to check on the guinea pigs, kitties and fish. I worked with Stella on the lesson. The class took over the store's aisles practicing. Our class is quite large. I am amazed Maizie is handling the noise and instruction time as well as she is.

Webkinz Fun on Mother's Day!

Thank you for all of your encouraging comments. I am in a state of shock that I am supposed to be following a program where I need to be in bed by ten o'clock. It has yet to happen. My medicine has not been finished yet so hopefully I will get it in the mail real soon. Now that I know there is something that may help with these darned adrenals....well, I want it now! The sooner the better!

I hope you all had a wonderful and relaxing Mother's Day.
Maizie gave me a beautiful card and a Beagle Webkinz. It is very cute and cuddly. I can't wait to see what it looks like online. Yes, I am a Webkinz addict. There could be worse things. Maizie and I frequently send one another mail and gifts online. I regularly send her food from my online garden. Maizie sometimes forgets to feed her Webkinz. My gift of strawberries and pumpkins is a friendly reminder for her to feed her slowly expanding family.

I recently purchased a swimming pool for my little critter. I earned most of the points playing Quizzy's Word Challenge but over seven hundred dollars of it was from my gardening. How cool is that? Ah, if I only had a green thumb in real life.Chloe likes sending and receiving sweet gifts as well. The photo above is from our Strawberry picking trip last summer.

I thought maybe I would have something sappy and sweet to say on this Mother's Day. But, Joe and I are watching Lost and I should be in bed. I love you all. Sleep well!

Update on Susie, Thinking about Blood Donation and Zoos

Susie, Chloe's mom is doing so much better after her hip replacement surgery. She is happy to be home even if she is only able to be on the first floor. They had to set up a hospital bed in the dining room and she is using a walker to get around. I got to check out her fancy new bedroom today and it was kinda cozy. I can only imagine how frustrating it is not to be able to go up and down the steps. Not to mention she has no shower on the first floor so she has to go to her mom's house to shower. Ugh. Fortunately her mother in law of whom she gets along well with is staying with her for a few weeks to help with Chloe and taking care of the house.

Susie had eight blood transfusions while in the hospital. I have never donated blood but now I am seriously considering doing so. Do any of you donate blood? Why do you donate? I am really feeling the pull. I think it is a miracle that Susie survived such massive blood loss during surgery. Without that blood....well, I hate to even think about it.
Today we picked up Chloe and met Melissa and Alex at the zoo. Our town has an amazing zoo. I grew up in Cedar Rapids, Iowa where our zoo was one block long. The zoo has been around about a hundred years. Old McDonald's Farm is in Beaver Park. I imagine it has been updated considerably. I hope it has. The zoo had a lion, some monkeys in a sad garage like building with no windows, a donkey, goats, ducks and chickens. There may have been some other animals but nothing memorable. As a kid I loved it but I had no concept of what an adequate living arrangement was for any animal.

I remember being able to hear the lion growling from where we lived. That was cool. Back then it had no security. It was free of charge then and still is today. Vandalism happened all the time. The lion was often spray painted and eventually shot to death. At least that is what I remember hearing. I have no reason to believe it was not true though. Very sad. I tried searching for a website of some photos from the zoo and found close to nothing. If we go back to visit I want to go there again.

When we moved here I was in awe. The zoo is affordable, immaculate and constantly improving. We usually go often in the Spring when it is not hot out. You can buy a pass for about $65. Very inexpensive considering how often we go. I am sprinkling some zoo pictures from today throughout this post. Tonight Joe is riding go carts in Boston. His company calls this 'team building'. Sounds like another excuse to go out and have fun. They will probably go to a fancy dinner and then hit a bar after that. Yes, I do get a tad jealous of Joe's ongoing adventures.

He gets to travel often. Sometimes to really great places like Israel. I guess the zoo is as good as it gets for me and lil' Maizie. Sigh.

Chloe Takes us to the SPCA

Yesterday Maizie and I had the honor of taking Chloe to her volunteer work at the SPCA. Chloe was excited to introduce us to her kitty friends. There are four rooms of cats and kittens. Each room has lots of cat beds and interesting toys. Everything was amazingly clean and well organized. We were told to used hand sanitizer in between each room. I had to remind Maizie to keep her hands off of her face due to her allergies. That was easier said than done. This experience was worth a little allergy rash. Inside each room there is a book that has a picture of each cat and information about their personality. Maizie loved these books. She made a point of matching each photo with the cat. There are a few with stories about the cats history.
As you can see Maizie found this information very interesting. After reading the book Chloe and Maizie would spend time with each cat.

I am sure if these Kitty's could talk they would share amazing stories of survival with us. If Maizie was not allergic to cats I bet she would have been wanting to bring one home. Luckily, she knows her limits.
Smarty is seen above loving up to Maizie. This is the cat Chloe warned us about. She came over to us all friendly like so Maizie began petting her. Within seconds she was hissing and scratching at Maizie. A sudden change of heart? Despite her attitude she appears to be one of Chloe's favorite cats to talk about. Maybe in time Smarty will become more trusting. If not, it is good to know he has a safe home at the SPCA.
The orange cat above is named Peter. Peter breaths like Darth Vader. I asked Chloe what that was about and she said he has a cold. I am sure there is an interesting story behind this cat's unique breathing. There was something precious about the sound of it. I wondered if the cat's chances of being adopted were lower due to this interesting difference in breathing? Needless to say, I was drawn to this orange cat with the unique breathing. If we were up for adopting a cat that one would have been mine.
Chloe looks forward to the day when she can have a kitty of her own. Chloe's dog Boomer is possibly a little too excited about cats so her mom has helped her find this wonderful outlet for her love of kitties. Chloe's passion for cats is equal to Maizie's passion for dogs. My other favorite cat was Happy seen above.
After lots of kisses the girls passed out kitty treats. Some of the cats don't trust people and I am sure if they could talk we would understand why. So, giving them each a snack and talking to them a bit helps them gradually build trust towards humans.

Chloe and her mother Susie have inspired Maizie and me to look into working with dogs at the SPCA. The training is pretty intense so I am not sure how Maizie will do. The coordinator said we are welcome to give it a try and see how it goes.

Susie has turned a corner and is finally able to get out of bed after her hip replacement surgery! Almost six days of being in a bed would drive even the most patient a bit crazy. Yesterday Susie had a procedure to block the blood clot from traveling. The massive bleeding and blood clot have brought up some other health concerns that will need to be addressed. It seems nothing is ever straight forward. I am thankful for your prayers. Please pray for Susie's continued improvement through the arduous physical therapy she is now enduring.

I am also thankful for the last seven days. Maizie has not had any episodes of vomiting. She has had three mornings where she required extra sleep but she did not go into an episode. I am keeping my fingers crossed!

Prayers for My Friend

Tonight I have a request. You have all heard of my good friend Susie and her little girl Chloe. Chloe is on the right above.

Susie went in the hospital for a planned hip replacement surgery on Monday. There were complications during surgery and she lost a lot of blood and required several transfusions. Just as she was starting to gain some strength and begin physical therapy a blood clot was found.

Despite this frustrating news Susie's spirits are good and she is hoping to begin physical therapy soon. Chloe is missing her mom. Her Daddy is taking her on daily visits but she senses the stress. Chloe struggles with anxiety and is doing well considering the situation.

Please send prayers of strength and healing for Susie. Prayers that Chloe and her Daddy will sleep well and that their anxiety will be calmed. Thank you.
Yesterday Maizie and I went to the zoo with Chloe. We had a wonderful time. The weather was perfect. Friendship is the bread of the heart.
Mary Russell Mitford (1853)

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.