And today went a little something like this...

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Today was one of the scariest days in my almost 7 year career of being a special needs mom. I'd have to say that I handled what this day threw at me like a pro.

I had the day all planned out today, I was going to accomplish some chores and get ready for William's PT to arrive for therapy. We also had an appointment with our favorite Pulmonologist (Dr. Kelvin Panasar) and we were super prepared for that and excited to see Dr. Panasar and his staff. I needed some RX refills for William, and to touch base with him regarding all Wild Man's superhero like progress he has been making in the past several months.  

William didn't have PT until 11am so therefore we had no rush this morning. William woke up around 5am, but I continued to snooze until 7 am and Isabell woke up around 7:30am. I made her breakfast and we played for a bit. At 9am I put William in his High Chair and buckled him in. He loves to sit in his high chair- I think he really feels like a big boy in it. Anyhow- I always put him in his beloved highchair when I am doing things around the house. Like taking a shower. Sounds pretty simple, right? I had Isabell fed, and entertained. She was sitting on the couch playing with her Tab. William was securely buckled in his favorite spot- so I told Isabell that I was going to take a shower (like I always do) and off I went. Within 3-4 minutes into my shower Isabell came into the bathroom and was playing in there. I thought that was odd, so I asked her what she was doing. She said she was playing and Bubba fell. I asked her "Fell on the floor? Is he on the ground?" and Isabell said "Yeah" like it was nothing. I bolted out of the shower and ran into the living room where I found the High Chair EMPTY- buckles unbuckled- and William was face down on the hard floor. I swooped him up and took him to my room to try and sooth him, and make sure he was ok. He was crying so hard, harder that I have ever seen him cry. William is always a happy camper, so when he cries something is really wrong. And with his trach- not much sound comes out when talking or crying. He was crying so hard that I could hear his intense cry through his trach. Which is not normal for William. I knew he was injured. I laid him on my bed to check him out. He wasn't bleeding. His head felt shaped differently than normal. William still has a very fragile head from his health condition. He still has a large soft spot that will most likely never close, along with his brain atrophy which means his head and brain are so very fragile. I kept feeling his skull and it felt weird to me. I knew I was anxious, and in the heat of an intense moment and I didn't want to over-react. I hooked William up to our pulse oximeter which monitors his heart rate and oxygen levels. William's normal heart rate while awake is 100bpm-125bpm. and when asleep his normal heart rate is  89bpm-95bpm. So this means the lowest I have ever seen his heart rate was 89bpm. When I powered on the pulse oximeter Williams heart rate was 77bpm and dropped to 63bpm. I had William on his daily required flow of oxygen which was 0.75lpm. Very low flow. The pulse oximeter was reading that William's oxygen saturation's were  92% and after a moment his saturation's dropped to 59%. My home liquid oxygen tank goes up to Max flow of 6 lpm. Since William's saturation's were dropping so much- I blasted him with oxygen by cranking my tank to 6 lpm. His saturation's jumped up to 100%. Good. Now the low heart rate was freaking me out. He was closing his eyes, and becoming limp. Then he would jolt and cry and wiggle his arms etc and his heart rate was going up from the 70's to the 90's. Up and down. So I knew I needed to keep him awake, I really felt like he was trying to loose consciousness. Meanwhile, I had to dart out of the shower in which I had not even completed to address this issue. After spending 10 minutes or so evaluating William, I called my mom because I knew I needed help with Isabell and I needed to get William to Phoenix Children's Hospital. My mom got here in no time, and I was afraid to drive to PCH myself, so I called 911. Paramedics were here in no time. They quickly came into my bedroom where William was and hooked him up to their monitors- asked questions and told me they can transport  William to Cardon's Children's Hospital or County. I don't have anything against Carson's, but I let the paramedics know that William has never been to Cardon's. I explained that he obviously has intense medical issues, and he has had 23 hospitalizations and 14 surgical procedures at PCH and that I felt that we had enough time and I recommended to drive a few extra miles and transport us to PCH. They all agreed. I said we will not go to County! We got to PCH about 10:30am. We went right into Emergency Dept room 6. The resident doc came right in within no time, and said a CT scan was wise. He rushed over to his computer- and put in an order for a CT scan with Radiology. Our ED Nurse Tiffany got us packaged up and down the long hallway of doom we went to radiology. (I call it hallways of doom because we had to rush down that long hallway last year when William was in Full Respiratory Failure trying to get to the PICU as fast as we could- NOT FUN!) CT scan was done is about 3 minutes! And back to the ED we went. Within 30 minutes, the resident doc came back in to talk to us. The CT scan showed that William does have a Non Displaced Skull Fracture on the back of his head. He said his brain looks good, and the rest of the skull looks good. No swelling. William is in pain, but we have been advised to treat with Tylenol, and he should be fine. We do have a follow up plan with Neurosurgery to make sure the skull fracture heals up properly.

In case you all are wondering- I had to get dressed in a flash when the ambulance was coming. My hair was dripping wet and in tangles. I threw it up in a matted pony tail and threw on some clothes as fast as I could. I knew the paramedics would arrive and want to load William up and Go. Of course I wanted to go with him in the ambulance. So, I am feeling like a Super Trooper today. With everything is disarray, and me getting transported to PCH in the middle of my lax morning routine I'd have to say I am pretty exhausted.

My mom had to call Richie to tell him what happened since I was taking care of my boy. Richie had a panic attack because he is 1300 miles away from home- and was scared for our little fighter. I was super scared as well. He was ready to leave work and fly home immediately. We decided for him to stay at work until I got to PCH and seen what the 'damage' was. After the resident doc said kiddos with fractures like William;s are ok to discharge and go home- I called Richie and told him not to worry and he didn't need to come home. William was ok. He is still sitting over there in Texas worrying about us though, and that is hard. We are not loving being apart right now, but we know we will get through this and be ok. He's the best dad, and I hate that he's away especially when my kids are sick, injured or not doing well.

Thanks to our Army of Helpers who jumped ship and offered to help us today. Isabell went with her Nana and my mom helped me get William home. We had lots of well wishes from Friends and Family and we appreciate that so much. We are doing great tonight, and William is doing fine. He is in pain, and I have been giving him Tylenol every 4 hours. He tries to be happy and social, then he remembers that he has a head injury and cries his sweet innocent little helpless cry. It's heartbreaking.

Isabell was upset with herself after the incident, and cried and cried. I didn't freak out at her, I remained calm- but after I started evaluating William and things got intense I could tell she realized bubba was hurt. And she did not like that. She loves her bubba so much, and tries to be such a helper. She is still learning her boundaries, and also being a stubborn big sister. This afternoon she was so sweet and loving to her bubba because he has a BooBoo on his head with no blood. She is obsessed with blood- so she keeps asking me if there was blood. No, there was no blood.

Off to bed I go, Hi-Ho, Hi-Ho. Zzzzzzz.

Laying in the grass, after a lil evening swim!

I don't know what normal is!

Excited & Bummed :-/

I started packing our bags today- we are headed back home tomorrow! Our 6 week visit to Texas with Daddy has come to an end. Richie is flying home with us, but is flying right back on Tuesday. I am happy to go home and get back to our life routine of therapies, playdates, and all the things we do at home. I am bummed that our time with my husband and life here at the tailerhood went by so fast. Isabell and William have had such a funtastic and all around fun time with daddy. Isabell is a total daddy's girl, and has been glued to his side for 6 weeks! And William has been the happiest camper I have ever seen. We have had a perfect time with no health hiccups during our time in Texas. I am so proud that we are doing so well and I have been able to travel like I have with Isabell and my fragile little William. Richie has been traveling for work since 2008. There are times that we aren't together for weeks (there have been times 7 or even 8 weeks that we have been apart) when Richie's away traveling for work. When I got pregnant with William in 2009, we were faced with an intense medical journey. Richie worked at home for a short while in 2009 and 2010. Then early 2010 worked in Los Angeles. He was able to drive home on the weekends often when he was working in LA, but he also worked most weekends. In October of 2010 I was able to leave William at Ryan House for his first solo visit. Isabell and I drove to LA, and we spent a few days visiting daddy. We went to Disneyland, and that was fun. After the project was completed that Richie was working on in LA, he chased work in Northern California. In September of 2011, work popped up in William's, AZ and he was able to work closer to home until the end of November 2011. Richie was working 7 days a week on that project, and during that time William was doing so well and we were able to drive up to William's, AZ (4 hour drive from Tempe) every weekend that daddy was up there. It is so awesome that we have our home away from home (our RV that Richie 'lives' in while tramping). It's comfy and cozy. In Feruary 2012 Richie got a great job offer and he jumped on the opportunity- even though it was all the way over here in Houston, Texas. We are thankful that he is able to to have such a great job with a huge possibility of advancement with long term stability. So we are making it work! And look at us, we were able to take this rare trip half way across the U.S.! Traveling with our Isabell is a breeze, but traveling with our William took some extra planing. Leaving behind our intense weekly therapies, 16 physicians, and our home town children's hospital was a tad nerve racking, but so worth it!!! Isabell and William are my perfect little travelers rather it's driving or flying. We had so much fun here in Texas. We loved doing our tourist thing, and had fun at the museums and zoo we visited. The people here aren't as friendly as I though they'd be, but we still had some fun.

I have some more packing to do, and I better get with it. More updates to come after our flight back home. Wish us luck for no setbacks at the airport, and no delays with our flight!

Let life happen!

I love my girl.

My Isabell is the most amazing little girl, and has something incredibly special about her. Her sweet and innocent little personality touches all who cross her path. I am more than lucky to be her mom.

On November 23rd, 2005 at 7:43pm, Isabell Maxine was born weighing in at 4 pounds 9.5 ounces and 16 inches long. She was tiny and perfect. Her umbilical cord was wrapped around her neck at birth and they medical team took her to the incubator/warmer to clean her off. Proud new Daddy, my husband Richie got to put her first diaper on. Her beautiful bright little eyes stared at him the whole time. After the staff quickly evaluated her, and determined she was ok they wrapped her in warm blankets and handed her to me. Being a brand new mom was something incredible- but being a brand new mom to Isabell Maxine Leon was the Best Ever. Richie and I were so in love with our tiny little Pumpkin Pie. We spent Thanksgiving in the hospital that year since Isabell was born the day before.

Isabell was super tiny, but doing great. She had jaundice and had to get her UV Therapy to improve her biliruben levels before we discharged. We were only at the hospital for 2 days and Isaebell was doing good enough to discharge. We were so excited to take our precious little tiny HOME!

When we got home and settled in, I enjoyed the lazy days of staring and gazing at Isabell. I held her all day, and adored her in every way. When we met our amazing Primary Care Physician Dr. Kevin Berger for the first time he was surprised that she was so small and gave her two thumbs up otherwise. After a few months went by and Isabell's growth and weight gain was appropriate for her, she was consistently in the -10 percentile range under "Normal". Dr. Berger mentioned that if her growth remains steady then that is good- but he wasn't sure if she would have any developmental issues as she grows and we wondered if she would catch up to the "Normal" range eventually.

By the age of 15 months, Isabell was meeting some developmental milestones and was the sweetest, smiliest and cutest little baby. She ate well, slept perfectly. She was the definition of a perfect baby. So well mannered, social, friendly and had such a sparkly personality. Even with all these amazing qualities- there were some important milestones that she hadn't met. She wasn't talking OR walking yet. I am a stay at home and very pro-active mom and I was doing all the mommy things that moms do. Play dates, Kindermusic, reading books, singing goofy baby songs, making silly faces- the whole nine yards. Isabell and I had a hay day playing hours on end and she would always just laugh her sweet laugh and smile her sweet smile. Still with all these fun things we were doing, Isabell was not saying any words. She was vocal and would coo and make funny sounds. Never any words. Isabell was active, but didn't roll over very well until she was 3 months old. She also didn't sit completely on her own until she was 7-8 months old. At 14 months old she finally started crawling. I had concerns that she was delayed and I went to see Dr. Berger for our 15 month well check. We decided to cover all bases, and he recommended seeing a Genetics doctor, Audiologist, Neurologist and Cardiologist and get their opinion on her delays. When we met our amazing genetics dr, Dr. Grebe, she evaluated Isabell and thought that it was possible that Isabell may have a genetic disorder and thought blood work could determine if this was fact. Isabell had genetic blood work done which came back normal. We met with a Neurologist and he recommended an MRI to evaluate her brain. The brain MRI was normal. We met Dr Bryan Sandweiss, Cardiologist, and he performed a series of heart ultrasounds and EKG's and an innocent heart murmur was detected that didn't alarm his at all- and recommended a follow up in later development. The audiologist we met at PCH sent us to ENT Dr. Chapel after a failed hearing test. After severe fluid buildup was discovered on Isabell's eardrum- we had tubes placed. Her medical evaluation was nearly perfect. But still I felt that Isabell had some significant challenges with her development.

Around this time I learned of Arizona Early Intervention from my cousin Amanda. She was able to get a contact name and number for them. I had NO IDEA what early intervention was, or who I would be calling. So after getting the phone number I called into Arizona Early Intervention having no clue what an amazing organization I was calling into. After some confusing conversations, I was directed to a person who organized a developmental evaluation for Isabell. Arizona Early Intervention was sending a qualified developmental specialist to my home to evaluate Isabell and her developmental progress. When Isabell and I met Developmental Specialist Haley McMakin- she determined that Isabell had significant developmental delays and would benefit from Speech Therapy to work on her speech, Occupational Therapy to work on her fine motor skills and Physical Therapy to work on balance coordination and gross motor skills. We started in home therapies at 18 months of age.

By age 3, Isabell qualified for a special needs pre-school program. She had PT, OT, and ST at school and her Teacher specialized in working with special needs kiddos. Isabell made an amazing amount of progress, but still wasn't talking.

At age 4 Isabell was still small and petite. She was doing great, but still had her challenges. She was still physically uncoordinated, and had overall muscle weakness. She wasn't writing her name, or coloring that great which meant her fine motor skills were very delayed. Her teachers and I thought she should get a hearing evaluation again. We seen our ENT, and her tubes were out. She had fluid on her eardrums again and failed her hearing test. Our ENT placed a second set of ear tubes and sent us back to PCH to have the Audiologist check Isabell out and and the Audiologist recommended a Sedated hearing test. The sedated hearing test determined that Isabell had mold to moderate hearing loss and would benefit from hearing aids. During this time frame, I also took her back to the cardiologist for a follow up from her visit when she was a little. We did a heart ultrasound and our new cardiologist Dr. Ellsworth discovered that Isabell had a Pulmonary Ring and needed to have it surgically repaired by a cardiothoracic surgeon. A Pulmonary Ring is a very potentially life threatening condition, as the ring was encircling Isabell's trachea and espohogus potentially cutting off her air and/or food supply! Isabell was a choker, and maybe this was why. So we scheduled for cardiac surgery in April of 2011. Surgery went well, Isabell was a perfect patient and recovered like a champ!
After surgery Isabell seemed to have much relief as she was immediately no longer a choker!

Isabell had always been a good eater, and always remained small and petite. That is until now.

I am having an incredibly hard time with this- and I am going to commit to helping my little girl reach her maximum potential with all the limited abilities she has. Isabell has gained alot of weight in the last several months, and the extra weight is not helping her make any progress when facing her physical challenges. She went from being petite and small, to the opposite end of the spectrum. Before this gets completely out of control, I want to do all that I can to change this downward spiral. Food has become an incredible obsession for Isabell. In Isabell's current state of development, she is quite obsessive over everything. Primarily food. She is really smart, but has trouble communicating which is challenging when she is obsessing over things. From food, to putting a certain outfit on- it can be a battle when the obsessing begins. Most times it starts first thing in the morning. It gets super tiring repeating myself 1000 times to an obsessive child. An obsessive child that is otherwise perfect in every way! NO I am NOT partial to her! Ha. Well of course I adore her in every way- she just makes me work really hard. My primary challenge now is to cut the food obsession. I also need to learn how to get her on a really great healthy meal routine.

We have an incredibly busy life, and my kiddos require alot of special care. I have gotten used to quick unhealthy meals, and serving high fat/high sugar/high calorie snacks. We love chocolate milk, and I am a sucker for milkshakes. I am not one that loves to be in the kitchen, and I don't feel like I am very creative when it comes to mealtime. I am wanting to change this, for the better. 

To the awesome Dad of my awesome kids.

My kids have an awesome Dad. We all like that guy. He's a keeper- that's for sure!

Special Needs Mom... A look inside.

One year Trachiversary, and Life is GOOD!

One year ago at this time, our little fighter Wild Man Willie was inpatient at Phoenix Children's Hospital. It was a 35 day hospitalization we will never forget.

Last year Richie was working for MASS Electric on the LightRail in Los Angeles and had been away from home for a while. The project came to an end in May 2011. MASS had a short 10 day project June 2011doing some repairs on a train system that was in Canada- and Richie had an opportunity to go on the short job that paid well. All travel and meals were paid for by MASS. So Richie left for his adventure early June 7th I believe.

For several months William had been so fragile, and had several troubles with respiratory distress. We were on and off lung steroids, been in and out of PCH, using more oxygen via nasal canula that normal, and our suctioning needs had increased. On June 12, William had a really rough night the night before and my mom came over to keep Isabell while I took William into PCH ED. We were at a baseline rate of 0.4LPM of O2 at that time and William was needing 2LPM and really struggling to keep his oxygen saturation's up(struggling to breath). He had no fever, but looked miserable. When I took him into the ED, I explained that William wasn't himself and gave the staff the rundown. He was admitted for observation since he is so medically fragile, and since his oxygen requirements were so high. All labs were negative for infection, and hid blood work did show that his CO2 levels were elevated. We got settled into our room in the late evening of June 12. We had a good night, I was able to get some sleep. William needed 2LPM of O2 all night, and was otherwise stable. Sleepy, congested, but seemed comfortable. On the next day June 13, we were half awake for shift change at 7am. William was receiving respiratory treatments every 4 hours and the nurses were checking on him alot for desaturation episodes. At 10am William had a small desaturation episode. Our nurse the Adorable and Wonderful Lauren (On the Trach and Airway unit) came in to check on the Wild Man. He sounded congested, so Lauren attempted to deep suction William (through his nose) and William gagged and turned purple and blue. His oxygen saturation's had dropped to 30% and we cranked the oxygen as high as we could to a flow of 15LPM. William's saturation's did not come up very quickly, and Lauren was calling for HELP. The hospital has an intercom system, and the Clinical Assessment Team was called in to asses William. Within seconds a group of about 12 Physicians, Practitioners, Residents and nurses were in our room. William had recovered and was back to his 2LPm of oxygen (still higher than normal, but lower than 15LPM!) and the assessment team decided that he may be ok- but they would get a bed ready in the PICU incase of another episode. Within 30 minutes later, William did it again. He turned blue, and it was so hard watching my baby struggle to breath. He was such a fighter though. The assessment team said to bring William over to the PICU. We gathered all the stuff we needed, and RN Lauren, PCT Stephen, and and RT (drawing a blank, I don't remember which of our amazing RT's were with us) rushed from the old building of PCH, 4th floor- to the New building of PCH, 6th floor! What an adventure. The crib William was in was not in great condition, and the wheels didn't roll that well. It took all of Lauren and Stephen's might to push the crib down the mile long hallway of PCH that we had to rush down- while our RT was holding oxygen securly to William's face. I was running ahead with a wagon full of our belongings. William really wasn't doing well by that time, and we got into our PICU room in a total rush. We tried numerous interventions to stabilize William's breathing- and nothing was working except continuous albuterol, with  positive force pressure of Oxygen via mask at 20LPM. He was responding to the positive force pressure of oxygen and albuterol, and was saturating at 100%- but someone had to hold it securely to William's face, and keep the albuterol going. Which we couldn't do forever. After doing so for about an hour, the team pulled me aside for a QUICK gathering. We recognized that William was in FULL RESPIRATORY FAILURE, and all efforts being made weren't working 100% to our advantage. There was nothing else we could do to restore William's breathing at that point, OTHER than placing a n INTUBATION tube down William's throat- sedate him and use a ventilator for breathing support in hopes that his lungs will regain strength after they rest.

During the midst of all of this happening, I managed to get ahold of my mom and she was able to get to the hospital immediately. I was there all by myself, and my husband was in Canada. I had talked to him as well, and it was just extremely HARD to be apart at that time. In the position we were in, it was nearly impossible for Richie to return home at that moment that William went into Respiratory Failure. He was going to be back from the trip on June 17- and him being away was super torturous. I am so thankful my mom is so supportive, understanding, ALWAYS there, and just amazing. She was there holding my hand, kissing her grandson who was fighting for his life, and taking care of the world around me when I could not. All I was focusing on was my baby boy, and how I WAS NOT ready to say goodbye to him. He was fighting SO HARD, so I fought with him.......

When our medical team looked at me and said "What are your wishes?" I said "PLACE THE TUBE!" And they asked me if I was staying in the room, and I told them no that I am placing all my trust in them since William was an extremely DIFFICULT Intubation- and would be out in the waiting room with my mom. I knew they would have a difficult time intubating him, and I knew that they would be successful after a challenge. I don't think I could be there in the same room to watch the difficult challenge, watch my baby fight for his life, and watch the chaos of the Interventionist Nurse Practitioner RT's and RN's struggle at a successful intubation. Sure enough- It was such a difficult task after the NP had tried intubating William 2x, the interventionist tried 2x, and they had to call the on call anesthesiologist to come in and intubate in which he did so successfully on the second attempt. After 6 attempts at intubation- the Tube was Successfully placed!

The team came out in the waiting room to get me, and my mom so we could go back to our Wild Man Willie's bedside and be with him. He has been sedated already, and was getting some much needed rest. He was getting breathing support from a mechanical ventilator- and with all the medical 'stuff' all hooked up to him, he looked incredibly comfortable and peaceful. Made my heart slow down just a bit after going through all that, BUT I was still hurting that my little boy was fighting so hard.

William was intubated for 14 days. Richie returned home from Canada on June 17th, and came right to the hospital. Each day William was needing more and more sedation meds to keep him calm, comfortable and to keep him from pulling his ETT Tube out. William had a special test done that determined that his diaphrahms were not moving, and possibly paralyzed from going into respiratory failure. The team came to Richie and I to share that information, and we discussed that William's lungs may be paralyzed and taht we can continue to keep him sedated and on the hospital ventilator and see if he takes a turn and starts breathing OR we could explore the options of having a trach surgically placed into William's airway and give his breathing support through a home ventilator and take him home after he recovers. We made some quick decisions and chose to go with the trach placement. OUR ENT came in on a Saturday June 25th and placed William's trach. Surgery went quick and successful.

William came back from surgery- and we were able to see our little man AWAKE and he looked even more comfortable. We were immediately able to start weening William off of all the sedation meds he was on. He was more and more awake and looking so cute. The trach, vent, and circuit scared the crap out of Richie and I becasue we though we would never figure out how to manage all of that equipment! Within a day we were feeling comfortable with all of the stuff, and started holding William and handeling him with his new gear so we could get used to it! We had to stay in the PICU for one more week, until he had his first trach change. When having a trach- you have to change it to a new sterilized trach each week. The first trach William had was sutured into his skin- so our ENT had to come to the PICU for our first trach change to untie the sutures and place the new trach. He was also checking out the stoma, and evaluating William;s airway. After the trach change, our ENT gave us the go ahead and go to the stepdown unit to the Trach and Airway unit where we would learn to care for William with all his new gear and where William would continue to ween off of all the drugs he was on while being monitored 24/7. We were told we could expect another 30-45 days in the hospital for this process. We transferred out of the PICU on July 4, 2011.

We spent days following our transfer to the trach and airway unit "Nesting". Richie and I spent nearly every second in our little hospital room with William learning all we could learn about William's new trach, and vent. It takes alot of education to learn how to care and manage a trach and also the vent. William also had another Broviac central line IV placed, and we were keeping it for long term access which also meant we had to learn how to manage and care for the Broviac.

In 10 days, we had checked off on all the items on our list to learn before we take William home with all his new gear. When the staff said it takes most families 30-45 days to check off on all the things we had to learn to care for the trach and vent and we completed it in 10 we were so proud of ourselves. The Trach and Airway said we set a Unit record for sure, and they were so proud of Richie and I for being such proactive parents. Richie and I both were so eager to learn and perform all it took to care for William. From suctioning the trach, bagging William, changing the circuits, doing a trach change, flushing the broviac, administering IV meds, cleaning and organizing equipment- Richie and I were in to together.

On July 14, 2011 we learned all we needed to learn, and William discharged from the hospital. We took our Fighting Fighter Wild Man Willie HOME!

After being vent dependant for all of July at and most of August at home- William started breathing all by himself with no vent support, nor oxygen support on August 27th, 2011. To keep William;s CO2 levels down, we still used the vent at night until mid October 2011. By that time William was fighting the vent, and I stopped using the vent 100%. William only needed oxygen here and there.

Fast forward to now- and I am SO excited and proud of where we are. For our one year Trachiversary- where the care we provide for William has dramatically increased and our work is more intense, I can say we are BETTER off now that we have ever been. William has traveled all over Northern Arizona, he has been to New Mexico and loves car rides. We have been able to visit Daddy since he travels 100% of the time as a Journeyman Lineman. We have even taken William on an airplane to Texas and we have been here in Texas for nearly 6 weeks. I have William's respiratory needs so under control, and I am proud of my hard work to flawlessly care for William and all his intense medical needs. I am proud that my husband works just as hard- to provide EVERYTHING for us, and is the best dad, and most pro-active dad I know when it comes to taking part in the needs of his medically fragile child.

Enjoying my freedom as an American

Happy Independence Day.

Travel Update!

Howdy Leon Family Fans. We have been in Texas for 35 days, and we have 13 days left of our 6 week getaway. We have been busy spending time with Richie and checking out the sights around Houston- while trying to keep cool from the heat and major humidity!

Richie got a Smoker BBQ and on Sundays we have "Smokin Sundays"- Richies smoked meats are killer. To be quite honest, everything Richie makes is super killer. I always tell people, he could make you a plain jane turkey and cheese sandwich and it would be the best turkey and cheese sandwich you have ever eaten. He has such a magic touch when preparing meals. He made these stuffed jalapenos the other night and they were hot as hell, but so incredibly delicious.

We went to Nasa Space Center Houston a few weeks ago and it was neat to see the Space Center. When we were out on our Tram Tour it started raining. We got to the first building to tour. All the people on the tram train unloaded and we went into the building- it was the command center where they have mockup versions of many space ships etc. We even got to see real live space rover's. When we were inside the building, it started raining so hard, ad lightening. We were unable to re load onto the tram train due to the lightening warning and we were stuck in the command center for 1 1/2 hours! After that, we were unable to finish the tour because we had to hurry and get back to the main building. What an adventure!

The kiddos and I went to the Houston Zoo on June 21st. It wasn't that hot out that day, but was very humid! We were there for 3 hours. It was so beautiful at the Zoo, lots of trees and awesome animal exhibits. Our favorite part were watching baby elephants play and wrestle in a large pool of water. They kept dunking each other, and tackling each other. Cutest thing ever.

It has been interesting going out and about by myself with the kiddos here in Houston. Loading up all William's gear takes lots of extra time, and effort. The travel oxygen we brought with us is big, heavy and bulky. The Wheelchair is big, heavy and bulky- and is in 2 pieces. Everywhere I go, I have to attach or detach the top portion of the wheelchair and load that into the truck. Then fold up the bottom wheelbase portion of the wheelchair and load it up. Loading up takes alot of time and patience- not only with William, but with Isabell too! Richie's ford truck that we are driving is taller than my Tahoe and Isabell struggles to get in, and most of the time struggles with buckling the seat belt. So to get ready I go out and start the truck so it can cool off, and load my personal gear (purse, phone, drink, food etc) I round Isabell up and anything that she wants to bring in the truck with us (a drink, toys, food etc) I hoist her into the back seat and I get in to buckle her and get her set up. Then I round William and all his gear up (feeding equipment, suction machine, ToGo bag, O2, toys, and the prince himself) and I hoist William into his car seat. Buckle him up, throw all the gear in. Then I load up the wheel chair - break it down into 2 pieces and hoist it into the bed of the truck (unless its raining, in which I then put the top seat portion of the chair into the front seat of the truck). I bet y'all were wondering how I did all that- and BAM, that's how!

One of our favorite places we have visited has been the Children's Museum of Houston. We have been there twice already, we loved it so much. Isabell got to play, and interact with many of the awesome interactive exhibits they have. They have this miniature kid town where kids can play and pretend. William, Isabell and I really enjoyed the kid town. We used our imaginations, played, laughed and had a ton of fun.

We also went to the Houston Museum of Natural Science. I really enjoyed it, but didn't get to see it all because it was incredibly boring for the kiddos. Totally a place where you CANT TOUCH anything. Doesn't work well with my Isabell who touches everything! We did get to take a special tour at the museum featuring real stories and artifacts from the ship Titanic. I enjoyed that, but I had to drag Isabell through it telling her NOT to touch a thing! (She touched almost everything- I am sure the museum staff wanted to kill us!) We were not there for long, but enjoyed our time together. If it weren't so hot and muggy out we would go out and walk around the city more.

Last weekend we went to Galveston. The beach there was so dirty, and it was kindof stinky there! It was raining alot on Saturday, but we got to walk around a bit and see a few things. There was  Carnival Cruise Ship docked there with people loading up onto it, so that was neat to see the Cruise Ship.

Richie has the 4th off, so we plan on sleeping in and spending the day together. Over the weekend, we are going to go to Shreveport, LA. The drive over there is beautiful, and it will be nice to get out of the trailerhood for the weekend.



I have something that I want to rant about....

To all my friends and family-

Having a special needs child has changed my entire outlook and perspective on life. I was once that person (like most of you) who would see parents out and about with their special needs child or children and just stare. Not staring out of disrespect per say, but staring like they were different or something. Staring because I didn't understand. 

Now that I have a child with many special health challenges and different abilities than the average bear, and I am the one who is being stared at everywhere we go. I would like to help the world understand people like me. I encourage our audience to say HELLO. I encourage those who are staring because we look different, or because you don't understand to make eye contact and smile. It's ok, we are human too. Parents like me like smiles, conversation, and even a helping hand at times. Instead of scurrying along to get where you are going, hold the door open for us at the store if you see us coming. If you see a mother of a child who is wheelchair bound, keep in mind that it takes everything in her might to manage that wheelchair and the child in it who may not be able to care for oneself. If you see her out with her child in that wheelchair, make her day a little easier by holding the DAMN door open for her, say hello and ask her if she freaking needs help! Most of us special needs moms will say "No Thanks, we got it" and that's because we have gotten used to doing it all by ourselves.

Many parents who have children with special abilities and require so much do not venture out that often, and rarely get to have a normal day. It takes alot of patience and preparation just to leave the house depending on how much equipment and gear the child requires. It is also hard to take a child out and about who is immobile. They are heavy, need diaper changing, among other things that require constant care. When you ever see a family like so out and about (at the store, county fair, Disneyland, etc) keep in mind that they are only trying to live life as normally as they can while being different. Would it be so hard to lend a helping hand when they are struggling through the door? Would it be so hard to smile at them and say "Hello"?

Don't be ignorant. Educate yourself, and surround yourself with knowledge on the matter. To better understand us special needs families- volunteer at your local Children's Hospital. Volunteer at local organizations that specialize in caring for children with disabilities. Learn how hard it is to care for these amazing children, but how they are just as human as you and the average bear. They just have different abilities than most. Connect with their parents, and let them know they are doing a good job! It makes their day.

I have to share the sweetest thing. We are here in Texas, and we have been hanging out with Richie's co-worker, Bit's family. He has a really great wife named Dawn, a 10 year old son named Cole and a functioning special needs 4 year old named Reya. The first time I went over to visit them at their house while the guys were at work- I pulled up in the driveway and Cole scurried out to greet me. He asked what he could help with, and helped me unload everything in the truck including the heavy wheelchair and oxygen tank and even helped Isabell out. And he didn't stop helping until he knew were comfortable. I have never had a 10 year old be so kind, helpful, understanding and respectful.  And hey- I am not throwing anyone under the bus here BUT many of my very own family members have not even been so helpful and understanding. I am so glad I met Cole, he's a good kid- and is setting some amazing examples to the society we live in. It's because he is the older brother to a special needs child.

So here is to all those friends and family of mine who don't have a special needs sibling. I want to spread awareness about understanding people with special needs. Understanding people with special abilities. Understanding that we are not from another planet, and we love to connect with people. We do not love to be stared at, pointed at, and made fun of.

When people are continuously staring at me and William it takes alot of my might to just smile back. I would love to make smart comments to them like "Take a picture, it will last longer" BUT how can I spread awareness that we are HUMAN like you if I am always attacking the staring audience? I don't say things like that to people, I just hand them a Team William business card- and sometimes hand out a Team William wristband which has links to our Facebook page, and a link to this blog. I hand those out to share our story, and share how we are living life to the fullest. We have hopes, dreams and goals too- they just are extra special when caring for our special children. It takes extra time and patience to achieve hopes, wishes and dreams when your the parent of a special needs child.

I recently had a jackasaurus approach me to tell me that it was disturbing that I left my William sitting in his wheelchair outside of an RV while I went inside to look inside. Here's the scene... We went to the Houston Boat Show and luckily there weren't many people there, so it wasn't busy. In one area of the showroom was some RV's. Richie, Isabell, William and I scurried over to look at the RV's, and we popped into one to check it out. Obviously, wheelchairs cannot go inside. We parked William outside the RV we wanted to look at, and popped inside for 5 minutes. Meanwhile I was chasing Isabell back and forth and I glanced at William 5-6 times in the 5 minutes. After I was done looking inside, Isabell and I walked around the outside of the RV and then I got William and started to push him along. An older man, who I have nick named Jackasaurus, approached me to tell me how disturbing it was that I left my child sitting out in the middle of God Knows What. For those of you that know me, I wouldn't put William in danger or harm if MY life depended on it. NOR was he left in an area alone with no supervision. I responded to the jackasaurus that I am sorry I have offended him, but my child is perfectly fine and to mind his own business and scurry along. He proceeded to call me a Fucking Bitch. being that I am the feisty gal that I am, and this jackasaurus was in the wrong- I hauled off and hit him as hard as I could in the arm, grabbed him by the arm and told the guy "I would like you to meet my husband and tell him what you just told me" and I yelled for Richie who came running out of the RV so fast! By that time the jackasaurus was yelling "Assault" and Richie asked him what the hell his problem was and the jackasaurus had nothing to say. This guy popped out of nowhere, seen something that he thought he should take charge over- and was mouthy to the wrong special needs momma. I have fought tooth and nail for William, and have gotten this far with him in his last 2 1/2 years, I'd have to say that I am doing something right. Anyone who is disturbed by that can go fly a kite. We immediately left the Boat and RV show with no visits from Security or the Law. We realized we are better than that, and I hope that jackasaurus had a bruise to remind him of what a HUGE Jack Ass he is.

So to all- I am now and forever going to be passionate about spreading awareness. Spreading awareness NOT to be ignorant! Spreading awareness that some people need to set their ego's aside, and stop being ignorant to the fact that People with Disabilities are PEOPLE too.