A Son Scare

After all of the health issues we've had, both scares and reality, we haven't had the "C" word yet. As I write this, I feel like I'm jinxing us with a near future diagnosis of cancer. Andrew has a lung cancer scare that involved a lung biopsy. I've had breast and thyroid cancer scares - though not quite as frightening as Andrew's biopsy. Everything has come back fine after testing, but the wait was always a challenge.
I'm sure I'm not alone in playing the "what if" game because we aren't exempt from cancer. No one is. It strikes anyone at any time.
When blood work is done, I know that is part of a basic panel. If the blood work is off, it could be an indicator of something brewing in someone's system. I don't get worked up about blood work, ever. I'm more anxious about MRIs and sedation than the routine blood panel.
That strong stance changed when we took Alexander to an orthopedist. Alex was diagnosed with chiari like his brother a couple months ago We need to follow-up with specialists other than the neurosurgeon before we discuss brain surgery with the neurosurgeon. In an effort to rule other things out that are causing his increasing pain, we are meeting with several doctors.
The orthopedist found no abnormalities in Alex's legs. He doesn't think Alex has EDS, the awful disease his neurosurgeon is concerned about, but he also didn't think Alex needed a geneticist to diagnose EDS. I've read that EDS is only diagnosed through a genetic test. I'm unsure what to think about that portion of the appointment but I'll set that aside for now.
The orthopedist said that he was suspicious of leukemia.
WHAT?!!! Wait.... that was NOT on my radar at all. Indicating that leukemia is rare did not help me. We deal with rare in our house every day. We aren't free of rare diseases here.
He discussed the symptoms of leukemia and how Alex fit the symptoms. Fatigue, bloody nose, joint pain, lethargy, and more... pretty much everything but the bloody gums fit. When I asked if we could wait for blood work during the January 20th rheumatology appointment, the orthopedist made it clear that testing needed to be done immediately. (Oh, he was serious about this "C" word)
I had to contact our doctor to have the blood work done.
In the meantime, we met with the neurosurgeon for Gabriel. The NS asked how Alex is doing and when we mentioned the leukemia concern, I honestly thought that he would dismiss it. Instead, he said, "that is a possibility with all of the different acute leukemia."
Oh.... crap. This is even more serious than I thought. So my brain goes to the "what if's" Andrew grew up with a friend who fought and beat leukemia. Surely Alex could fight this too. What if he doesn't win? What if he has an awful cancer making him lethargic and what if we don't catch it in time? What if he loses his hair during treatment? How will my heart survive this trauma on top of the the rest of these problems?
I will need to find strength from the reserves I didn't know existed.
While we waited for days for the blood work results to come back, the "what ifs" circled my head. When Alex got a bloody nose or cried in pain while getting dressed, my heart sank. 

 
Eventually we got the call from the nurse and Alex's blood work is NOT indicative of any problems. It took me a minute to process that we received good news. We hear bad, awful news more than once a year. Not this time - not this problem - it's not ours... I wish it wasn't anyone's battle. I wish those words were wiped out from our vocabulary and from anyone having to hear them.

Heart dissection

We haven't been to a pediatric cardiologist in two years. It was the longest time span since Gabriel was 18 months old. At one point we went every six weeks so this was a nice break. I wasn't anxious about this appointment because Gabriel last had an echo in the hospital in August to check for any side effects from the medication.

As Gabriel gets closer to puberty and the growth spurt of adolescence, the scare of his need for a new valve becomes a greater reality. As the valve grows, the leakage and stenosis Such is the joy of congenital heart defects. I used to belong to a CHD support group but as autism and chiari became a more immediate concern, Gabriel's bicuspid aortic valve became less concerning. Until I have to remember to mention it for surgery or when the doctor orders tests in the hospital to check his heart to make sure his heart is holding up. Then everything heart related rushes to the forefront again. Oh yeah, I AM a CHD mom too.
We went to a new pediatric cardiologist in an effort to have all of Gabriel's specialist in one building. Gabriel had an EKG and an echo done. The leakage is still minor and nothing else has changed.
Thankfully the entire family attended the appointment because it was important to Gabriel to have Alex go through the same tests he completed. It eased Gabriel's anxiety to have some control throughout the appointment. Overall, the kids did a great job. 

While we waited to talk to the doctor, the kids dissected a large plastic heart. We talked about valves and blood and oxygen flow. The past year has been one full of learning about the brain and different sections of it so the kids were very interested in the heart.
An interesting note -- a few years ago, a cardiologist at Mayo told Andrew that all extended family members should have an echo done to find where the heart defect was coming from in the family line. Our new pediatric cardiologist made the same comment and said that someone in the family has it. We've told all of our siblings and parents but few have gotten tested. I guess we may never know which side of the family holds the CHD mystery.

Kindergarten Polar Express

Lane's kindergarten holiday party is this coming Friday. We were able to finish everything the Sunday prior to the party.  It's nice to have an engaged child    

Her party will center around Polar Express.  We printed book marks that say "I believe in you."   We stapled mini candy canes to the back of the book mark. (found here: http://cathedralkindergarten.blogspot.com/)  

 

We made little snowman building kits to give to her classmates. The kits contain three marshmallows, pretzel sticks, and chocolate chips.   We added a topper that says, "do you wanna build a snowman?" (found here: http://prettyprovidence.com/treat-bag-toppers-do-you-wanna-build-a-snowman/)    I also found snowman baggies to use for the kits. 

Lane made a card for her teacher and we added a gift card to her teacher's favorite family restaurant.  I'm thrilled to have one out of three kids holiday class parties in order.   Two to go and we are done with the school stuff! 

Snowflakey

The Elf tradition isn't one I appreciate fully. I don't enjoy getting out of bed once the kids are asleep to make sure Snowflakey the elf has moved.  However, my kids love the magic and they know about the Elf from school.  There is no escaping it unless I want to be a real Scrooge. 

Thankfully our college friend and babysitter stayed at our house for a few days and took over the adventures of the elf.  She did a great job too.  

While Snowflakey (aka Snowflake) only moves locations when I check on him, Snowflakey is far more creative when our friend is here.  When she left our home, she left a cheat sheet with ideas for the rest of the month.  She even left the items to make the magic happen.  

Snowflake brought his ( her?) house one night.  

The kids planted seeds and candy canes grew the following day!

How adorable is this Elf swing?!

A marshmallow angel with marshmallow-men.  The kids ate the marshmallow and Snowflake's house.  

Happy Holidays friends and family!

Busch Gardens

We have annual Sea World passes this year. We were given "free" admission to Busch Gardens through our passes and decided to take advantage of them. Andrew and I went to Busch Gardens over 20 years ago on our first trip to Florida together but we haven't been back since that time.
It was about an hour and a half drive from our home to Tampa. We didn't tell the kids where we were going and they were not thrilled about the surprise. It took a little while for them to warm up to the idea but when they did, they LOVED it.

We took a train ride around part of the park to see the animals. Trains and animals are a perfect combination for Gabriel! They went on several rides made for kids. We watched tigers. My kids have fed goats, horses, giraffes, zebras, emus, and more. Now they can add kangaroos and wallabies to their list! It was a lot of fun to feed the kangaroos and wallabies. They are super soft and gentle while they are eating their vegetables.

If we lived closer, we would definitely frequent Busch Gardens more often. It was that much fun! I think Sea World should gift us with the free admission to Busch Gardens again soon.

Lane's First Concert

Lane had her first holiday concert at school. All of the kindergarteners in the school were included and the cuteness was over-the-top.

Lane's class happened to be in the front and she was in front of where I sat, which was great! Prior to the concert, I told her that I wanted to hear her voice. Apparently she took it to heart because I could hear her sweet little voice over the other students. She also put her entire heart into her performance, which was pretty darn fun to watch.
(On a sad note, these are the events when autism smacks us in the face again. We were unable to attend the concert as a family because Gabriel wouldn't be able to handle watching the performance. I am grateful I was able to go to watch her.)
I look forward to more performances in the future by my little performer!

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.

Halloween Costumes 2014

For several years, we've had themed Halloween costumes for the entire family. This year, the boys, ages 9 and 8, have decided to stray from our theme idea. Since they need to wear the costume, it's only fair to give up my theme idea.
Lane has been more disappointed than I was to switch to individual costumes. She has change the boys costumes to fit her theme, in her mind any way. She thought about being Ariel which means Alex's costume idea is really Ursula. Gabriel wants to be a dog so he becomes Prince Eric's sheepdog, Max.

Alex picked out his costume. His choice? A devil. I am unsure why he chose a devil, it isn't something we talk about at home very often. Alex has told me that another third grade student told him that he has to go to church. In response, he said, "I already know about God, so I don't have to go." I asked him if he would like to attend a church meeting and he has no interest.
We do talk about God, religion, and spirituality a lot in our home. Taking all three children to a church would be rather challenging at this stage of the game. I remember asking the pastor at the hospital how in the world we would take Gabriel to church with his current behavior. It didn't take long for the pastor to agree that it would be nearly impossible to find an appropriate congregation for our family.
In any case, I will have a princess, a dog, and a devil this Halloween. Alex has informed me that he wants to dress up like God next year. I'm glad I have a year to figure that costume out! It's clear that God doesn't look like Jesus either because he wants to be Jesus the following year.

Lunch Mystery

Gabriel has become a picky eater since his hospital stay. I would be the same way after his ordeal with food. Poor buddy.
Our week day routine involves me picking up from school at 12:30. I ask him what he would like to eat. If I fail to ask him, he might ask me for something as we near the house. Since we live 15-20 minutes from town, it adds quite a bit of time to our day to turn around to get him what he desires.
Yesterday I asked him what he would like for lunch as part of our usual conversation at 12:34 pm. He told me that he wanted to go to the restaurant that has movies and pizza. Hmmm... a restaurant that has movies and pizza? I asked, "was I there?" "Yes" he replied. "Was Daddy there?" Then he started getting agitated. "Yes! Don't you remember?" he inquired.
Thankfully we drove past the restaurant and he pointed it out. Pizza Hut was our destination of the day! Andrew and I have taken him to the Pizza Hut buffet once and there are three tvs in the eating area.
There is NO way I would have figured out the restaurant that has movies and pizza if we hadn't driven past it. I'm grateful we drove past it or it could have resulted in a meltdown that is medically dangerous. Unfortunately, I drive past Pizza Hut every day if I don't take an alternate route. I need to remember that alternate route home to avoid a daily trip to the pizza buffet.

No More Toddlers

The kids are past the little toddler stage. While their budding independence is incredible, I long for the moments when they needed me in a different way.  

Lane is usually exhausted when she comes home from school. I didn't waste a second when she asked to on my lap.  She quickly fell asleep curled up on my.  

We were content. 

Elsa Pumpkin

The 2014 holiday season has begun. Lane brought home a paper pumpkin project for school. I've helped create many paper jack-o-lanterns but this one was especially fun.  

The typical jack-o-lantern wouldn't do for Lane. No, she wanted a special one. As we looked through templates for pumpkins online, Lane was thrilled to see printable stencils   

She picked a princess Elsa stencil and we set to work. We cut a pumpkin out of orange paper and added our stencil.  She glued the green stem on top and added glitter for a finishing touch. 

Here it is -- our kindergardener's fall creation.  

Bus Accident

1st Responder Wireless News

ST CLOUD, FL (OSCEOLA) *SCHOOL BUS MVA* NOLTE RD AT CANOE CREEK RD. R53 ON SCN W/ A SCHOOL BUS REAR ENDED BY A CAR, 5 JUV ON THE BUS, ASSESSING FOR INJ. FL56
09/29/14 03:54 PM

FINAL U/D ST CLOUD, FL (OSCEOLA) *SCHOOL BUS MVA* NOLTE RD AT CANOE CREEK RD. R53 ADV NO INJ, CX ALL BUT SQ53 FOR ASSISTANCE CLEARING DEBRIS. FL56
09/29/14 04:19 PM

Two of the five juveniles were my children. Thankfully they weren't injured emotionally or physically. But, seriously, a bus accident?!!

I received a text at 4:09 stating that there was a bus accident and my kids wouldn't be home for a while. I waited for Gabriel's teacher at our home so I was unable to get the kids. 

Andrew received a phone call and he left work immediately. I was concerned about the kids but andrew said that after everything we have been through, he was okay. 

When Andrew arrived at the scene, there were police officers, an ambulance, and a fire truck.  The bus was at a stop sign when a car hit the bus from behind.  The car went under the bus.  Everyone appeared okay. 

Florida law states that someone at an accident scene needs to be seen within ten days by a physician.  Otherwise any injuries can't go toward an insurance claim. To be safe, we took the kids to the doctor and they continue to appear fine 

Caring Bridge

I have updated information about our lives on the Caring Bridge site. Life has become quite a challenge but we are finally figuring out a new routine and a new normal. Please feel free to comment and be updated on this site: http://www.caringbridge.org/visit/gabrielmai
Thank you for your continued support and love. We are all grateful for it.

K and 3

Lane and Alex have been in school for one week.  

They both love school this year and it is exciting to have a kindergardener and two third graders 

Gabriel hasn't gone to school yet since he returned from the hospital on Tuesday.  He says that he wants to go back and wants to meet his new teachers and friends. 

They will all take the bus this year.  Even though it's more challenging to get them up earlier, it's much easier to walk them to the bus in the morning.  There are no arguments about getting in the car, they just walk up the bus steps and wave good bye. 

Wow. You're an asshole

You're an asshole when.... Your 9 year old nephew is fighting for his life in the ICU and you're busy taking selfies at the dentist.  You don't bother to mention his battle. You don't care - why? Because you're an asshole. Yes Erin, that's you.  The selfish bitch that we all know you are and I'm calling you out on it in my blog.  Few people are fooled by you.  If you change and give two shits about your biological family, I will eat my words. But really, if someone is unable to do something for you, you don't reach out to them. 

I'm the one who drove with my three young children when you were very ill.  I cleaned your house full of dog feces and maggots.  I loved planning a shower and bachelorette party for you.  I didn't love when you called me selfish and kicked me out of your wedding as I sat in an ER alone, right before having surgery. 

I did that because you are my sister.  You always will be.  I will also call you out when you're a selfish asshole.  

Gabriel will continue to battle.  And unless you step up to the plate, these three gorgeous children of mine will never know who you are.  Because someone who lies about me having gonnerhea and whatever filth you said, doesn't deserve them.  

Summer Camp

My kids have never gone to summer camp before.  We've done tons of summer activities and they've taken lessons.  We typically have scheduled days to help me keep everything organized.  

This summer required summer camp for Alex.  I found some camps that still had openings and thankfully a good friend had her kids there too.  She (and her husband) were generous enough to drive Alex every day for two weeks.  We are so grateful for their help. 

Alex went to ice skating camp the first week. He enjoyed it. The first day, I gave him money for the entire week.  He spent it all and apparently another child said, " I won't be your friend unless you share your money."   Needless to say, we practiced how to handle such a situation.  

The second week was dance camp with a Frozen theme.  Alex really likes dance and the movie.  He wasn't thrilled that the dance teacher didn't teach him the "guy" moves instead of just the girl portion. He's been pretty spoiled with the only boy spot with his dance teachers at our studio. 

We have two more weeks of camp planned. He will go back to ice skating camp and then he will attend gymnastics camp with Lane.  

It's been nice to hear about his adventures at camp.  I'm really glad he's busy and learning new skills while being social. 

Meningitis

Day 9 post op and Gabriel has been admitted to the ICU with meningitis.  As if brain surgery doesn't illicit enough fear in a parent, now I have to hear that my child has meningitis. 

The neurosurgeon did a spinal tap to determine which type of meningitis he is battling. I was surprised that the spinal tap is performed in his hospital room.  Andrew stayed in the room and ended up assisting in case Gabriel woke up.  

If he has bacterial meningitis, he will be in the hospital for 14-21 days depending on which bacteria it is.  It takes 48-72 hours to run all of the tests so the earliest we can leave is Sunday evening at 7 pm. (It's Friday evening)

All of the beeps and running oxygen and suction swooshing are making me anxious this time.  Actually I'm scared  I'm terrified about what lies ahead of us This is our third stay in the PICU in a matter of months.  The bright lights flash across the screens with numbers and when they go too low, people run into the room and monitors beep furiously. 

This time we have an added bonus: the staff comes in the room in a yellow mask and a yellow protective covering over their clothing. It feels like I'm on a TV set, not a child's hospital room. The extra protection is freaking me out, I can only imagine what my 9 year old is thinking when he sees these people approach him. 

Gabriel's Surgery

When Gabriel does things, he chooses to do them big.  This includes surgery.  Rather than tubes in his ears or adenoids removed, he has major brain surgery. 

The morning of July 15, Andrew carried Gabriel to the car at 5:15 am.  We have taken him to things in during the early morning hours and he simply slept in the car.  Instead, Gabriel told us that he was angry about being in the car at night time.  It was time to quit going so "forward-er" and go home.  It didn't take long before he told us that he didn't want to go the doctor's office. 

Given the situation, it took all my strength not to turn the car around and cancel his surgery time.  The few days before his surgery date, I stared at his beautiful head that didn't have a single mark on it. He would soon have a large incision in the middle of the back of his head.  

We continued to the hospital and upon arrival, I dropped Andrew and Gabriel off at the front doors while I parked the car.  Gabriel threw himself on the ground and yelled at us for bringing him to the hospital at night.  We managed to get to the second floor.  While I registered him, Andrew continued to de-escalate Gabriel.  Gabriel pulled hair, scratched Andrews face, and yelled.  I'm glad there was only one other family in the surgical area with us. 

The nurse called Gabriel to the pre-op room.  He was still angry that it was night time. The sweet staff attempted to calm him down and talked to us about everything.  When it came time to go back to surgery, the staff attempted every trick they knew to get him there 

They decided to skip protocol, dressed both of us for surgery, and Andrew and I escorted him down the hall.  When the operating room doors home, reality smacked me hard.  There were twelve nurses and doctors waiting to perform brain surgery on my baby.  

I held the tears in, somehow, as Gabriel jumped into the wagon. The anesthesiologist grabbed the mask as the three of us rubbed his arms and he calmly went to sleep.  The nurses move him to the bed and we kissed him good bye.  My lovely son awaited his surgery. 

The nurses escorted us out to te waiting room and told us that we did an excellent job with Gabriel.  The also said that most kids that anxious don't calm down like he did.  In a way that made me feel better 

Uncomfortably Numb

In two days we will be sitting in a hospital while our son has major surgery.  The benefits outweigh the risks and in my heart I know Gabriel will come out of this feeling better. I still struggle with the emotions and stress surrounding the situation. 

I've dealt with depression since I was a teenager  I am open about it but I don't tell everyone because depression still has a stigma.  Ive heard other people make comments about themselves or other people. They say things like, "if they would just get off their tush and do something, they will be fine."  "If they look at their blessings, they will see that their world isn't so bad."   These statements, while well intentioned, only isolate the person with depression more.  

I am numb.  With this numbness, I've been worried that I would have crippling depression and we do not have time for depression to hit with a furry right now.  Numb didn't seem to be the correct word.  I still feel things.  I just can't move or stop staring at my handsome little man cub.  Numb wasn't the right word at all 

Another Chiarian mom used the word paralyzed.  Yes, paralyzed is more appropriate.  I am paralyzed with fear.  I am scared out of my mind about the  uncertainty that lies in the days ahead.  I lack control the minute I give Gabriel a last hug and kiss on Tuesday morning.  

I also have a problem asking for help.  I'm a caregiver at heart. I want to help when I'm able to do so.  It's just who I am. Asking for help is a humbling experience for me and one that fills me with gratitude. It isn't easy because I don't want to inconvenience or take advantage of anyone.  I know I will never be able to repay everyone.  Honestly, I hope I will never see my friends in a situation where I will need to step in to help in the same way. 

We have had numerous offers for help for the next three weeks.   We have child care, meals, cleaning, grocery shopping, dog walks, child rides, hospital visits and more covered by our friends and community.  I have friends sending things from out of state.  I have offers for skype and even an offer to fly here. 

I didn't realize how loved we are here In Florida and across the states, until we had such a challenging event present itself.  Thank you for the prayers and the help.  We will never be able to express our gratitude enough.  

Major Surgery In One Week

Next week at this time, we will be preparing for major surgery. Gabriel has been scheduled for decompression surgery on July 15th at 7:30 am. We have to arrive an hour early.
I'm teetering between being numb and bursting into tears today. Neither one will help this situation or make it go away but I am an emotional wreck. The neurosurgeon said, "this is major surgery but it isn't as invasive as removing a tumor." It was meant to put everything in perspective for us but it makes the fact hit home that a stranger will be in my son's head, manipulating his brain.
The surgeon will remove the top vertebrae, part of his skull, and the cerebellum tonsils that are hanging into his neck. There is also a cyst that needs to be drained. The surgeon doesn't know if the cyst was mislabeled and he actually has hydrocephalus. So there's that - hydrocephalus - a buildup of fluid inside the skull that leads to brain swelling.
The recovery could take 2-5 days in the hospital. The surgeon said that children who aren't as complicated, medically and behaviorally as Gabriel, are usually there for two days. It will take a couple weeks until he feels like himself and then he will be completely recovered in six weeks, given no complications.
Please do not give me credit for handling this well or for having more strength than you can imagine. You would do the same thing I am doing and your heart would be breaking apart to bits as you watch your son today, knowing what he is facing in just over a week. You would take on the surgery yourself if it meant he didn't need to do it. You would need support and strength from people near and far. You would feel desperate and weak. You wouldn't be able explain the absolute fear that rocks you to your core when you consider brain surgery for your child.
Yet you would have hope that his quality of life would improve in six weeks. You are an adult and you have to slap a smile on in order to maintain some type of order in your household. You would feel grateful that there is something to relieve his symptoms, even if it isn't a cure. You would fail in your attempt to thank anyone who steps forward to help.
Put yourself in my shoes and think about how difficult it will be to hand my child, my firstborn "baby", over to a stranger next Tuesday so they can remove bone from his head. It could be you. I never thought this would be me. I'm sure most people aren't prepared for these things.