Silly Shoppers

I didn't have anyone to go to Black Friday with this year.  Black Friday isn't as much fun alone so I stayed at home and saved us some money on things we really don't need any way.  Later in the afternoon we took the kids for minor shopping and a late lunch 

We got our Christmas tree.  We had t long discussion about which tree to get.   Everyone had a different idea about the perfect tree.  Gabriel wanted a baby tree.  (Think Charlie Brown type tree).  Alex wanted a fluffy, oval, dark green evergreen.  Lane picked out the eleven foot tree.  After that madness, I was ready to go home without any trees. Somehow we managed to pick our tree out. 

We walked around a store and the kids came up with this look. 

Note: Gabriel's mask is upside down.  

The house was around 63 degrees today. It's definitely cold for us.  Alex commented that this is Colorado weather without the altitude sickness.  He is also unimpressed with the cold water when he turns on the sink. 

Cooking Kid

Only one of Mai children enjoys cooking. It's a lot of fun to watch her in the kitchen figuring out how to make yummy food   Andrew is a better cook than I am and it's adorable to watch their Daddy/daughter time.  

Today they made omlettes and gluten free shortbread cookies (aka rock cookies) this morning.  

 

Some more cute Lane moments that I want us to remember: 

She came home with a pilgrim hat made out of paper that she made at school 

When driving in the car, Lane kept herself occupied by making a map.  

The other day Lane and I watched "19 Kids and Counting" together.  She looked at me and asked, "mom, why do they have 19 kids and none of them have autism and we have two with autism?"   Good question, Lane.  I honestly don't have an answer. 

Autism Speaks Swims

We need to thank Autism Speaks and Mermaid Aquatics.  The boys took two weeks worth of swimming lessons and the cost was covered by Autism Speaks. It's wonderful to see an organization at work through my sons. 

The boys had basic swimming skills but we haven't moved past those basic skills.  These two weeks of lessons taught Alex strokes and different kicks.  Gabriel renewed his confidence and swam in very deep water without a life vest.  He learned how to use flippers and worked on his technique.  

Their lessons were at the same time, and that made it a lot easier for me. 

On the last day, Gabriel jumped off the diving board.  I was so proud of my ten year old for having the courage to try something new!  The photo shows Gabriel with his instructor but he jumped off the board by himself. 

Peghorn Park

Lane had her first field trip last week. I was excited to join her a a chaperone.  I have fond memories of my mom taking me on my field trips in Denver when I was in elementary school there.  (We were at the same zoo less than two months ago that I went to on a field trip!) 

The school is walking distance to Peghorn Park.  We walked to the nature area and listened to a story about tracks. Then the kids decorated a walking stick with colorful tape, string, feathers , and beads.   

We went a short hike to discover animal tracks and animals.  Then ended the four hour field trip with lunch at the playground. 

Ten parents volunteered to chaperone   It was such a great turn out for a first field trip.  Lane is in a great class with a wonderful teacher.  

The field trip was much like the nature center activities I used to take the kids to in Iowa.  I doubt Lane has any memories of it since we moved here when she was two years old but it was a day that jogged some sweet memories.  

Turkey Disguise

Lane had a homework project to complete this week. She had to disguise a paper turkey to hide from the Thanksgiving chef. It is a cute idea!
Lane, in true Princess loving fashion, created an Anna turkey disguise. I was proud of her hard work as she spent a majority of her evening coloring, cutting, and decorating with glitter.
By the way, it looks like a unicorn vomited on my kitchen floor. There is glitter everywhere! 

the Positives

It's time for some positives in a blog because really, my life is full of positive moments. There is a LOT of compost too but that's for another day.
This will start out sounding negative but hang in there with me. I promise it gets better... so many days, I many every day, I feel pangs of what life should be like....what life would be like without autism, and ADHD, and heart defects, OCD, and chiari... and all the other crap we deal with... when I get glimpses into other families lives and I want it. I honestly do. When I was pregnant, I never thought I would have a perfect life or be a perfect parent and mediocre seemed fine with me. If I muddled through it, that was okay.
I see families rushing off for boy scouts and soccer or football. I hear them complaining about the trip to the pediatrician for a fever or a cough that won't go away and I think, "I wish that was me." I wish I didn't have to go the pediatric rheumatologist, pediatric cardiologist, pediatric orthopedist, pediatric neurosurgeon, and pediatric ophthalmologist next month. I wish my life revolved around practices and tournament time rather than co-pays, insurance battles, medication, and Google PhDs.
Well, NEWS FLASH, it doesn't... so time for some positives...

I have three kids, two have special needs and here are some cool things about them, that the average family doesn't get to experience:

1. They are young at heart. It's not from me and my parenting. They just are.... they like little kid things still. As much as I want to fight it and I want them to like things meant for their age, I don't have to deal with the older kids things that lead to uncomfortable conversations and thoughts (yet). Until this past year, my 8 and 10 year old sons watched Mickey Mouse Clubhouse and Thomas the Tank Engine in the morning. We have since moved to Gravity Falls and Sponge Bob.
2. Holidays are still magical. They have NO idea that a fairy, magic guy, or animal doesn't bring them something fun on a holiday. Even if they dabble in the idea that "Santa" isn't real for a moment, it doesn't last long and I am completely and totally loving it.
3. Kids with autism can't lie. Okay, they can but my kids have such black and white thinking that it doesn't happen. They are rule followers and if "god" or "the police" or "teachers" make up the rules, that's it, those are the rules. Nice, right? So when someone tries to contradict my child, I don't have to question who is telling me the truth. Trust me, I know my kids limitations and deficits, but I do not have to contend with lying yet.
4. VANS I buy my kids cute VANS or generic similar brand shoes The boys don't have the fine motor skills to tie their shoes so I keep VANS in business. Why not? They look cool.
5. Sleep overs are an impossibility. I hear about other kids asking about sleep-overs and wanting to spend time with other kids at their houses. Yeah, not a problem. They have ZERO interest. It means that they can't sleep in our bed, with us. (but I won't go there, I'm looking at the positives)
6. They don't care about name brand clothing. Alex favors name brand clothing because he has great taste but he doesn't complain if it's an off brand.
7. I've met some really cool people. Patient teachers, knowledgeable doctors, therapists, nurses, other parents with special needs children, adults with autism -- they have all had an effect on my life. Our neurosurgeon feels like part of our extended family. 
8. I know who my real friends are and who I can count on. I've created an extended family to add to our biological family and we are blessed with knowing wonderful people who will step in when we need them.
9. I've found reserves that I didn't know were possible. The ongoing stress and trauma have made me less judgmental and more understanding of other people's perspectives.
10. I can pronounce and explain huge medical terms and concepts, without a medical background. I understand things most people haven't even heard of before.
11. I don't take child development lightly. I celebrate many milestones with pure joy and glee. He wrote a full sentence! His eyes are tracking! He can button his shirt! These aren't minor developments in our home and that makes some days exciting.

Chiari x 2

Alex was diagnosed with chiari, type 1 a few weeks ago. I knew in my heart that his diagnosis would be chiari because his symptoms are the same. Part of me wanted the diagnosis to know what we are dealing with and the other part of me was hoping it wasn't true. Another chiarian in our family? It's a lot to digest.
He is in pain. The pain in his head, arms, and legs is severe. His fine motor skills have gotten worse, rather than better over the last couple years. It's heart breaking to watch a child in pain and to have no control.
Chiari can cause significant symptoms in patients. The worst permanent problems include nerve damage, paralysis, and fatality. It can be a debilitating problem causing pressure headaches, incontinence, bowel problems, fine motor issues, respiratory issues, and more. My child could have problems walking, swallowing, and controlling his emotions.
It's a lot to digest emotionally. I have two children with chiari malformation. I have two children with autism. I have one child with a heart defect. I have one child with a ADHD.
The neurosurgeon wants to wait before doing surgery. Surgery is the only treatment for chiari and it isn't a permanent solution, it gives hope to slowing the progression of chiari. I haven't even said this out loud to many people. It's painful to write and painful to consider brain surgery on a second child.
I was fine with waiting on surgery because Alex is doing well in school. I didn't want to risk his success academically right now unless absolutely necessary. I also don't have the strength to go through another brain surgery and its possible risks. Even though Alex is more verbal than his brother, he isn't compliant. It won't be an easier process than it was with Gabriel. It might even be worse because I KNOW what can go wrong. I have lived it once before and my heart is still recovering from the trauma.
However, today the school nurse called me at 1:18 because Alex was in the nurse's office. His legs hurt. She didn't know what to do with him or how to help him. There isn't anything to do. The pain medications have huge risks and don't outweigh the possible benefits. This means I have to contact the neurosurgeon and make sure we are doing the right thing for Alex.
We also have appointments for Alex with a pediatric orhopedist and rheumatologist to confirm or rule out other possible issues. We will need to consider genetic testing as well. The neurosurgeon is concerned that Alex has EDS. EDS is a connective tissue disease. I don't know a lot about EDS but I've had my suspicions about it for months and haven't told anyone.
My heart sank when the doctor mentioned the possibility. EDS stands for Ehlers-Danlos syndrome. It is genetic and can cause a lot of problems in the digestive, excretory and cardiovascular systems. Some features of EDS include fragile skin that tears or bruises easily, tearing of the muscles and joints, unstable joints and more.
Our neurosurgeon has only seen a few cases of EDS in his pediatric patients which makes me more worried because to me, it means Alex's symptoms are noticeable to the NS. We will know by last winter what our next course of action is with Alex. I continue to figure out how to manage my emotions and cope with children who have life long serious conditions. The enormity of it slams into my being hourly as the anxiety grips my heart. I want to take their pain away and I can't. This is tough.

ER Visit for Mom

I spent Friday night and Saturday in an incredible amount of pain. It was in my lower right abdomen and it reminded me of ovarian cyst pain I had a couple years ago. My goal was to make it until Monday morning before seeking medical attention. However, the pain became unbearable Sunday night so the kids and Andrew drove me to the hospital.
I spent 9 hours at the hospital and I was finally discharged at 4:40 am. I didn't get any sleep but I was able to get decent pain medication to feel better. I had an ultrasound, CAT scan (that included gross contrast with Gatorade), blood work, and a urinalysis to determine what was going on with me. The nurse told me that she thought it was my gall bladder until I reminded her that I no longer have a gall bladder. Then she determined that I had a UTI even though I knew it wasn't that type of pain. I know my body well and it ended up being a 6x8 cm ovarian cyst. Holy hell does it hurt.
When the nurse gave me an IV, I became an emotional mess. I've also been a compliment, easy going patient but after our hellish summer, the tears exploded. I couldn't help but think about all of the times Gabriel did a "push" of medication as I watched her inject medication into my line. The emotional wounds are far from healed from this summer.
I am feeling better and I think the cyst is gone without complications. I vote for no more hospital visits for a while for Mai family!

Halloween 2014

The winter holidays are here! We started off with a busy Halloween that was a lot of fun and extremely busy.
Our first activity involved Oktoberfest on the other side of Orlando. Gabriel liked the German music a lot and commented on the beautiful young women in their German outfits. Lane enjoyed dancing with her friend and Alex was happy once we found a cool art project for him. The food, activities, and company made it a great few hours together as a family.
We went to Sea World's Spooktacular. The kids dressed up and got lots of candy while trick-or-treating around the park. They received far too much candy that we used to give out to kids at our door on Halloween. The kids enjoyed the characters as they collected their candy.

The Thursday prior to Halloween, the school had a Kindergarten pumpkin patch. The PTO donates large pumpkins for families to carve together. I honestly think it was the only time I've enjoyed caring a pumpkin. It was a lot of fun to watch kids run around playing while eating treats. Parents carved pumpkins while the kids scooped out the inside of the pumpkin. There were fun photo opportunities as well.

Halloween was a busy, active day for all of us. I spent the morning with Lane's classroom helping with the fall festival rotations. The Kindergarten rooms switched classrooms every few minutes and completed a new activity in each classroom. It was wonderful watching Lane's interactions with her peers while doing the fun activities.
After Lane's fall festival, Gabriel and I joined Alex's class. Alex's class had a Charlie and the Chocolate Factory party while watching the movie. The teacher has a chocolate fountain and I set up other things for the kids. I had Wonka goggles and golden eggs for the kids. I also made an Oompa Loompa poster and a contract from the movie for the kids to sign. It was a really cute party.

We were supposed to join our community in a Halloween party I helped plan but it became too complicated to join. We got the kids dressed to trick-or-treat and went out together as a family.
The kids did well but Gabriel's behavior was odd at points. He asked for three pieces of candy at each home. At one door, he told the owner that he wanted to be the first to receive his candy. She told him that he would have to wait because he was the biggest kid and she enjoyed giving the candy out to kids. Gabriel demanded his candy while surrounded by six other kids. She denied his request and Gabriel proceeded to meltdown. It was at this point that I could see a change in her expression, that "ah ha" moment, that "light bulb" went off. Even though he looks like any other ten year old, he's not. He has challenges and something outside of his routine is difficult for him. She apologized and of course, I said that it was fine and really it was fine but it is just another moment when I get slapped in the face and the stink hurts. He isn't like every other kid. He wants to do things like other kids and he has a tough time processing his environment.

The kids seem to enjoy passing out candy more than getting candy. (as long a it isn't a favorite candy) It took a while for Gabriel and Alex to understand that every person wasn't at our home to talk to them. We had hundreds of kids at our house and it was so much fun to feel the excitement. Alex became obsessed with scaring people. It took several trials for him to understand that it's unacceptable to scare younger children.
He wore his creepy devil costume and found the best spot to hide was in our yard. He sat still like a lawn ornament and people didn't see him. He would move slightly or walk up behind someone and scare the jeebies out of them. He mastered the art of scaring strangers by the end of the evening.
Halloween is over and we are now gearing up for Gabriel's tenth birthday and Thanksgiving. We have an enormous amount of sugar from our holiday and look forward to the coming months of celebrations.

Alex's First MRI

Alex has had bad headaches and intense pain in his arms and legs. Alex danced up to four hours a week in class last year and to see him in pain, crying that he can't walk, is heartbreaking. His pain started three years ago when I clearly remember talking to him about growing pains and it has gotten progressively worse. After the nightmare with Gabriel, and noticing that he isn't growing quickly, I asked for an MRI for Alex to check for abnormalities, specifically chiari.
When I mentioned my concern about Alex to the room of specialists who were happily enjoying Gabriel's company during a neurologist's appointment, the room went silent. The first person to speak was the neurosurgeon who said that he would have an MRI done for Alex but it's only a ten percent chance that Alex has chiari as well. I didn't mention that our family tends to deal with rare things.
Chiari is a progressive disorder. Worst case scenario includes fatality, permanent nerve damage, and paralysis. Typical symptoms include leg and arm pain, digestive issues, pressure headaches, and much more. Some people have no symptoms from chiari but when chiari is found on an MRI due to symptoms, it's evident what is causing the pain. There are only a couple medication that can be used to help the headaches but they have strong side effects and don't always work. The cost-benefit analysis often shows that the medications aren't worth the risk, especially in young children.
Alex has never had an MRI. Overall, he has been a healthy 8 year old boy. I explained the machine and showed him pictures. I told Alex that he had three choices in order to get through the MRI. He could do the test without medication, with a little liquid medication, or he could go to sleep with medication.
When we arrived at the hospital, Alex was in a great mood. I noticed that he was extremely talkative. It was much like me when I'm nervous because I get chatty or I laugh in an almost inappropriate way in order to deal with my anxiety.
Alex picked out which movies he wanted to watch during the MRI. The anesthesiologist talked to me about the medication he would use if needed. However, Alex told us that there was no reason for medication. He wanted to remember everything. He also asked me to explain how the machine worked and I couldn't remember enough to explain it to him.
We were called in for the MRI. I sat near his head during the MRI and his eyes darted from me to the movie. He laid still the entire time and didn't need any medication.
It was a neat experience to talk to one of my children about a test and what worked best for him. As much as I didn't want to put Alex through the MRI, it was a neat experience to have with him. I was impressed by his bravery and his interest in knowing what was going on throughout the procedure.