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.