Being real. Friends, familly, apes, and kids.

My attempt at the latest family photo:)

Stress. In all areas of my life. I guess that is the best way to start this blog out:) But hey who doesn't have stress? This blog is more a form of therapy for me today. I have been stirring all of these thoughts and emotions around in my head and heart over the past couple of months and hesitated on posting my thoughts, but here goes.....

Friends. Thankful for the handful of true friends that I have. The friends who stuck by me when I had my first born son at the age of 18. I was a clueless teenager raising my greatest accomplishment in life. My friends who would come over to my little Modesto apartment and sit with me on Friday and Saturday nights instead of going out and partying because I had my little Jer bear to take care of. My bestest  friend ever who would meet me at the 5 points Denny's in Modesto at 2 am while I was on my break from my second job just to get some coffee. (She isn't just my best friend, but my children's aunt; Family) My friends who I didn't talk to for months at a time because I was so consumed with the stress of life, kids and a bad marriage who are still here to this day if I need them. I am thankful for my friends who have stuck out our friendship and have taught ME how to be a good friend (maybe not the best always but I am really trying).  I truly don't know where I would be without them. The friends I have met along the way to this point in my life... who would do anything for me or my kids... I can't even begin to express what that feels like. They listen to my stupid pointless rants, make me laugh when I need it or when I don't, don't get upset when I go weeks without answering texts or calls, understand that I am so busy that sometimes I can't even think. My friends who I have not met yet, but have made since having Mason. I can't wait to meet you all someday.  Friends. I love you all. 

My family. Some are blood, some are not. Thank you. Thank you for your support, when I haven't always made the smartest decisions. For being the best grandparents, papa and nanas, uncles and aunts, funmas and etc. I love you all. 

Apes (as my close friend says it). Apert Syndrome. I hate the sound of that word. I hate the thought of that word. I hate going to the doctor and having to give a repeated diagnosis of what Mason has. (This is not to say I am not grateful for those doctors educated in craniofacial specialties, but there are very few who say, "oh hey I know what Apert Syndrome is.)  Insurance companies. I hate you all. I hate spending hours of my day on the phone with you explaining why in the hell you should cover this and that, and being transferred from one person to another and getting the run around for sometimes 6 hours a day.  I am expressing all of this because I know EVERY other mother/father of a child with special needs feel all of these angry feelings. It's not all "oh he said a word today" or "he made this progress" or "he finally lifted his head at 16 months old". These are real feelings. I feel so angry sometimes. I don't question why I have Mason. I question why I go to BJ's, and every adult in there stares at him like he's a science experiment. The awkward feelings of ADULTS staring. I rarely go out anywhere I don't already know people, so when I go out into the god forsaken public, I become very aware of how terrible human beings are. I only wish they knew how awesome Mason was. That he is probably the coolest almost 2 year old there is. That I am so proud of his older brothers normalizing him. I wish I could shout out about his best new trick (getting into the somersault position but not flipping), or how he just started walking and is the best at it. I proudly walk that boy around, but people of society, please don't think that your snarl looks and quieted conversations about my baby don't get to me. To the mother holding her precious little baby, you would feel the same way if I called your precious little baby ugly. Friends. I love you for always loving my kids and proudly walking them around or being around them always. 

Jeremy. My oldest son. He is so amazing. Mason looks so much like him. Jeremy proudly calls Mason his little brother. He loves every Apert child I have shown him on facebook as if he has had a forever relationship with them. He thinks Henry from Turlock is the coolest kid he has ever met. Callie Anne from Arkansas has the prettiest eye lashes he says. He can't wait to meet her when we visit my grandparents sometime soon. Mary Cate will marry Mason, and he tells Mason all about Mary Cates pretty bows. Jeremy is so compassionate. He is protective. He treats Mason no different than Brodey (second brother). He wants Mason to be tough. Jeremy and Mason have a bond that is so special. 

Brodey. My second son. Almost the big 6. He plays cars with Mason, wrestles him, pulls him in the wagon at scary big brother speeds and would punch a kid for picking on any of his siblings. He is my fighter. Not necessarily physically, but will definitely make his opinion known. 

God really blessed me with having my older boys before I had Mason. He blessed Mason. Mason needs his big brothers for the rest of his life. 

EXHAUSTION. Some of the closest people in my life don't understand my exhaustion. They dismiss it as kids, and for a long time I did too. But it's not. I work. I have 4 kids. While my two older kids are at school, I am working my part time job as an insurance biller (sarcasm), finding the next best doctor who can perform the next surgeries or getting 2, 3 and 4th opinions on Mason's surgeries.  Mason's weekly therapies (he has 4 in home therapies a week), driving to San Francisco a regularly 1-3 times a week for his appts. When the older boys get home from school the day officially begins. We have baseball, and we all love it. Jer is a stud and Bro is just adorable. The babies chill out at the field, and we watch them. I can't wait until Mason is playing t ball, or moved up in to competitive baseball and feeling huge accomplishments of hitting that base hit, or sacking the quarterback in his football games. I CAN'T WAIT. Anyone who knows me, knows that I love sports, and love my kids playing them. I am thankful for the outlet that it gives them, and all of the things that the coaches teach them. I can not say enough about the Galt Jr. Warriors and how amazing the latest coaches are. I can't wait until Mason plays. I know he will be safe from kids making fun of him, and will instead be encouraged by his team. 

Positive notes. MASON IS WALKING. He walks everywhere really. He loves the freedom it has given him. He is so good at it. I couldn't be more proud. 

So this post wasn't suppose to be as much negative as it is my way of showing we are real and all feel. So keep your head up mamas, and put on your smile and carry on. But when things do get too tough, turn to the friends you have. Thank them. We have been given a special calling, so embrace it. I embrace every moment of motherhood. Snap a million pictures and thank God every night for giving me the strength to get through another day. I would do absolutely anything for my kids, and would do every day since Jeremy was born over and over again if I had to. No regrets. Just real emotion. 

One love

That baby has a big head.....

Our Family in San Francisco

I feel inspired to write tonight after an incident that happened this weekend. It actually happens more than I would like it to, but this weekend really "erked" me, and I hope that my post doesn't come across as a rant. Lol. Because that is not my intention. 

We went to a birthday party at Sky High over the weekend, a local indoor trampoline place that my kids LOVE. While sitting there playing with Mason and Marley a group of little girls came up to to Mason and said, "That baby has a big head! What happened to him?" Now this isn't what bothered me, because I welcome ANY opportunity to teach others about Mason's differences and show others how awesome he is. What bothered me was their MOTHER who said, "That baby has something wrong with him," and scurried her children away like he was the plague. If she would have stayed just a bit longer, I probably would have given her a piece of my mind, kindly. :) What the heck is wrong with people!

This has been weighing on my mind for the past couple of days and I can't seem to shake it. I DON'T want to go on about it, but I encourage all parents to EDUCATE their children. Not everyone is the same. We are all different, aren't we? Tonight we started reading the book, Wonder, as a family. So far so good. This is a great book for families to read to their school age children. I especially recommend it to families of cranio kids who have older siblings, or younger siblings in school. EDUCATE. 

On a more positive note, Mason is taking itty bitty steps! It seems like this week he has become more and more determined to walk! He will take a few steps from one person to another. He is also becoming quite the little show off when it comes to standing alone:) His new favorite trick is trying to do a somersault. He gets on his head with his booty in the air and waits for the push over from a big brother, or mommy/daddy. He is signing "more", "no more", "please", "eat", "thank you", and we almost have "help" down. Every time I start my little pitty party about whether Mason is going to be as smart as my other boys, or if he will ever talk, I have to remind myself, "hey, he can freaking do sign language." haha. 

On Friday Mason is having some more scans done to check the pressure/fluid on his brain. We will then have a meeting with Neurosurgery after to talk about the possibility of having a shunt placed. Then next week we meet with the plastics team.

I am feeling so grateful this week for my two older boys. I feel like Mason was given a special gift of having two older brothers to teach him everything. I picture Jeremy driving Mason to school when he's older, Brodey teaching him out to fish, Both of them demanding that he play in their front yard football games, and wrestling matches. They adore him, and treat him no differently than any other 18 month old kid. I feel so complete with these little boogers:) Until next time....

Some pics

This was the very first time I got to hold Mason

The bond that Jeremy has with Mason is unbreakable

My babies. The boys loved going to visit it the hospital

Brothers

Mama and daddy photo

The beginning.

Mason at 3 hrs old with transport team

Hi. I am Casey Freitas. Mother to Mason Fluty, and this is his story.


WOW. So It's taken me 18 MONTHS to sit down and actually begin blogging. I first and foremost want to express my gratitude to everyone who has in some way helped out thus far with Mason. Whether it has been financially, fundraising, family, a simple text asking about him, or about the rest of the family, and the friends who have been absolutely amazing through this all. Thank you! My first post I mostly want to give just a back ground on Mason's story. I think a huge reason I have been procrastinating doing this is because of all of the emotions I get when thinking back to the day he was born.  But here goes....

On Nov. 21, 2010, Michael and I found out that we were going to have a baby. We were so thrilled. At our 20 week appt., We learned that our baby would be a boy. Michael being 1 of 7 boys, was so excited that he was going to have a little man to carry on his last name. The doctor told us our baby looked great and was healthy. I questioned him about my little boys hands and how they looked as if they were in a fist in every picture. He said, "Babies do this in the womb. Don't worry. He looks great."  I had an easy pregnancy, until at 36 weeks I began having contractions. They decided they were going to do a c section because my contractions were very close and I was far enough along, but before doing so they wanted to do a quick ultra sound. As they did some quick measurements, the doctor said, "His head is only measuring at 32 weeks." They gave me medicine to try and stop the contractions and decided against the c section because of the odd head measurement. I STILL thought everything was ok, and that my little man just had a small head (he he).

The following week my doctor did an amnio to check the lung maturity, because I was indeed 37 weeks and I was almost guaranteed a healthy baby. Tests came back positive, and we were good to go for a c section with in the hour!! I was so nervous, and excited. I couldn't wait to hold my little boy.

As I laid there in the operating room with a friend, we anxiously waited for them to pull Mason out and show him to us. But as I heard him start to cry, the doctor looked over the blue drape and said, "Your baby has a chromosome disorder." My reply, "What? That's not a funny joke." He then looked over again and told me that Mason fingers and toes were fused. I instantly burst into tears and was in a cloud of confusion. I began talking out loud like a crazy woman. "A syndrome? 50 year olds have babies with syndromes. Where is he? Let me see him. Did I drink too much coffee during my pregnancy? Did I do something to cause this? Let me see my baby. Why can't I see him?" Someone responded, "Your baby is having trouble breathing." I was in a sea of emotions. Finally they brought him over for barely a second and showed him to me. He was perfect. His fingers and toes were not visible, but I immediately fell in love with him. But I looked a bit closer and realized something was wrong with his head. "What's wrong with his head?" The nurse walking away with him said, "Nothing, sometimes this just happens when they are in the womb, it will start looking normal soon." I knew that something was not NORMAL about his head. They whisked me away to recovery. The NICU doctor told us that Mason's syndrome looked like what he thought was "apert". So in between throwing up in a tub from all of the anesthesia, I was googling this syndrome called apert. Pictures were scary. Very scary. I read what I could, and it didn't look good for Mason.

They finally took me to my room, and told me that an intensive care transport team  from University California San Francisco (UCSF) hospital. They would be a better option for taking care of Mason. My nurses name was Tulip, and I can swear to you I almost laid this lady out in my hospital room. She first came up to my bed ( I am still vomiting to the point of barely being able to talk), and shows me Mason's newborn hand prints, and says in her extremely broken English, "I don't know what wrong with doctor they didn't get hand all way. It look like blob." I said, "His fingers are fused, that is why it looks this way". Then she told me (obviously not educated on my newborn infants syndrome), "Why you baby in NICU? Some times baby just born can't breathe from being in there too long. He come soon." I began telling her that my baby was being transported to UCSF and I hadn't seen him yet and I wanted to go to NICU to see him. She told me that I would see him later. THAT WAS ENOUGH FOR ME. I began getting out of my bed, 2 hours post op, throwing up and pretty much began crawling down the hall. Until TULIP realized that I was serious. She then told me I could go for 15 min and that was all. I finally got to hold my little boys hands. They were so cute and so fused. Michael had been with him since he was taken to NICU and he told me he was so happy and that he loved Mason so much, which was a huge relief, because I was still thinking that Mason's syndrome was my fault.

So recapping thus far. Mason's hand WERE weird in ultrasounds. His head measured smaller because of that shape  and he was off to San Francisco.

Michael and his dad went to San Francisco the next day to stay with Mason until I could be there. My doctor let me go the following day. I finally got to hold my baby.

Mason stayed at UCSF for the following month. Michael spent the weekends there, but other than that I drove EVERY DAY 2 hours there, 2 hours back. Just to hold him and make sure Jeremy and Brodey, Mason's older brothers were able to hug and kiss on him. They adored him immediately. We had meetings with this team, and that team, and students and genetics, and so on and so on. I still look back at that entire time as a time of mass confusion. I remember getting the news that Mason had all 10 finger and toe bones. I was so excited, and just figured that was something that we could fix later on. There were lots of sick babies at UCSF. Sick babies went to that hospital because they were so good, but it was always so sad to be there.

Coming home. Mason was on oxygen for the first 4 months home. Because of his abnormal airways he couldn't breathe. So I lugged that thing back pack tank everywhere. Football practice, mall, store.

I could go into all of the details of every surgery and every little scare but there will be plenty more sooner rather than later I fear, but to sum it up Mason has had 2 cranial vault reconstructions, 2 finger/toe release surgeries, and tubes put in his ears. We are preparing for his next surgery, which will be a shunt. This will drain fluid from the brain to his stomach and hopefully stop his hydrocephalus. We should be having scans done in the next week or two, and will have a better idea of surgery date after that. He is also having a sedated hearing test on Thursday to adjust his new hearing aids perfectly to his hearing loss. We go to San Francisco almost weekly for appts., sometimes more. I arrange all of these appts while my older boys are in school, so they are never bothered by them, because after all of the appts., real life/or what I can my real life is still happening.

Mason continues to develop, behind most, but steadily trucking along. He has an early intervention re-evaluation this next week to measure exactly where he's at. I am so proud of how far he has come, and look forward to watching all of his progress.


I mainly wanted to start this blog for two reasons: Apert awareness, and venting my feelings. Some days are overwhelming and exhausting when it comes to Mason's care. I swear, like a friend told me today, fighting the insurance companies is a part time job on top of everything else that comes along. I have spent countless hours on the phone with ins.

I want to thank ya'll for taking the time to read my blog. Think I am cut out to write a novel? he he