All I wanted to do today was go for a walk with my kiddos!

Late yesterday afternoon, William's central line IV, AKA his Broviac would not flush. William's Broviac is a central line IV catheter that is tunneled into his body into a large artery near his heart. William has a broviac because he is a chronically ill kiddo that sometimes needs meds and fluids via IV. Since William has very little, weak and frail veins the typical IV doesn't do the trick, leaving him with several painful infiltrations. The Broviac was placed in June 2011 and has a long-term purpose- meaning that we were able to bring William home from the hospital with this special Broviac central line. We had alot to learn about the broviac. It is a HUGE, I mean HUGE risk for infection. This IV catheter is tunneled near his heart, and if any bacteria gets into the catheter and then into his blood he could suffer from a line infection which can sometimes be fatal. In order to keep the line free from germs, we have to change the sterile protective medical dressing over the area of the catheter that hangs outside of William's body. We have to change the dressing under somewhat sterile conditions. Obviously his crib or blanket that he is laying on for the dressing change isn't sterile, but I have  dressing change kits with a slew of items to be as clean, neat, and sterile as possible for the dressing change. A sterile field to lay down in the area to allow a sterile field for the sterile dressing change, a surgical mask to protect my germs from breathing on the area, sterile gloves, sterile gauze, skin protectant, and chloraseptic cleansing swabs to sterilize and clean the skin and catheter. Among a few other things. The end of the catheter has a changeable cap that has to be changed weekly as well. To change the cap, we have to rub an alcohol swab around the tip for 30 seconds to sterilize the area for the new sterile cap. And then daily, if nothing is going through the line, I just flush the line with 5mL of a solution called heprin. Heprin loosens up the blood and keeps it from clotting the line, but even with proper flushing of the line, it could still get clogged. To flush the line, I open a sterile pre-measured syringe of heprin, wear sterile gloves, rub an alcohol swab on the tip of the cap for 30 seconds, let that dry then twist on the sterile heprin syringe and administer.

So- very unfortunately my little man's broviac wouldn't flush last night, and it had an area at the end that was loose and didn'tlook right. I had been instructed by my medical team that if I ever experience problems with the broviac to go to our Phoenix Children's Hospital Emergency Department and that a special team called IV team would come evaluate it. (PCH IV Team is AWESOME!!) This morning we had a scheduled and much needed appointment with our pulmonologist Dr. Panasar in Gilbert. That appointment went well. The plan after that was to go to the PCH ED, get the broviac figured out and come home to talk a walk in this awesome weather with my sweet kiddos. I dropped off Isaebll to my mom at the hall thinking that I'd be back somewhat shortly to go home. Those plans were crushed with an 8 hour ED visit that lasted from 12Noon to 8pm. When we arrived to the ED, it was not busy at all. (I know what a busy PCH ED looks like) A nurse that was not our assigned nurse came into the room and said she works with broviacs all the time (but was not IV team) and that she needed to put a special med into the line to try and dissolve any blood clots. My nurse Tiffani pointed out the weird loose spot of the broviac and the nurse said if it breaks than IV team can fix it because she was really trying to force the dissolving solution into the line. After Nurse know it all (she had a very Miss know it all attitude) was confident that she got the dissolving solution into the line (which Tiffani was confident that the solution did not go into the line properly) the solution had to sit in the line for 2 hours. So 2 hours came and went and the line still wouldn't flush. So by that point I was demanding for IV team STAT. When IV teams Michelle (Love her) came in she immediately noticed the broken weird looking end piece. She said it was not good because it appeared to be broken and could be a gateway for bacteria and she would recommend putting any solution into the line in case it has bacteria in the broken area. Meanwhile Nurse know it all was really trying to shove the solution through the line with alot of pressure. They should have just called in IV team to begin with (Like I asked them to) to take a look at it. After the discovery of the broken piece, we decided to have the broviac removed. Then there was a hiccup in our plan, because William has had his broviac


Broken end of the broviac that IV Team's Michelle cut off for a temporary repair.

Spring Break 2012 days 1, 2, & 3!

The weather has been perfect outside the past few days, and we have enjoyed the first few days of Isabell's Spring Break. Isabell was home from school all last week because she was sick. She has had this gagging cough for so long now. But today was day 3 of Spring Break.

On Saturday 3/10 the kids and I stayed at home most of the day. I did some things around the house and I let Isabell ride her pink car around the driveway for a few hours. A little girl from down the street rode her bike by our house and stopped and wanted to play. I wasn't sure I wanted her to play without her parents around... I didn't even know this little girl! She was a cutie, and I'm sure Isabell would have fun- but who are you are where are your parents!? A guy whom I have never met came over and asked if she was ok over here and he exclaimed that she was his friends kid and they were working on his car. He said if she, Mackenzie was her name, is any trouble to send her down. Um- dude, did I agree to watching your friends kid? So I told him that I was doing some things around the house and that I couldn't watch over her, and I couldn't have her coming inside but I didn't mind her playing in our driveway. So he scampered away. Then Mackenzie kept jumping in Isabell's pink car and it rammed into my house, then again into the recycle trash bin and I kept nicely telling her she couldn't drive the car. My reasoning was because I did not know her, her parents were not around, she could get hurt and she didn't know how to drive it! I wouldn't mind teaching her, but if she got hurt her parents are not around, and I am not taking on that responsibility. So I put the pink car in the garage, and brought out Isabell' bike and Razer Scooter. And I got them a drink of water and a bag of goldfish crackers. They giggled and played- yet Mackenzie was a little bossy and when I was outside with them Mackenzie asked me "What is your deal?" I was shocked that a 5 year old asked me that! What a sassy pants! So then ran and got in the pink car again and drove right into my Tahoe. I was frustrated at that point that this little girl I didn't even know was not listening to me! I ran in front of the pink car and made her stop, and get our promptly. I looked up and another guy was walking towards us. He was giving me a dirty look, and Mackenzie called him "daddy" So I laid into him! I told him that his daughter was told to stay out of the pink car, and she didn't follow directions and now she has smashed into the house, trash can, and then my car. I told him I didn't want her to get hurt while her parents were not around. He didn't say anything but "Sorry" and made Mackenzie go. I would never let Isabell just go off and play with somebody I don't know! But anyhow- William, Isabell and I went out to Macs Broiler and Tap for dinner. Then came home and watched a movie.

On Sunday 3/11 was my step dad, Tom's birthday. The kids and I went up to my mom and Tom's house in N. Scottsdale to enjoy the day. My mom had a veggie tray, hummus and crackers, she made a pot of beans, and they did some yummy ribs on the grill. Some of their friends came over and we all ate some good food. After the food we had some red-velvet birthday cake. My mom got a migraine headache and wasn't feeling great around the time of cake and was laying down. After we had cake, the kids and I loaded up and were headed back home to Tempe by 5pm. When we got home we went on a small walk- I held William in my Baby B'Jorn carrier and Isabell drove her pink car until it went dead at the end of the street and I had to pull it back home! After that, we came in and the kids got cleaned up and ready for bed!

Today, William's nurse Tiffani got her at 7am. After she got here, Isabell and I got ready and took Corbin the dog to South Mountain for a hiking adventure. The adventure was more like Torture Session for me- nut I am glad I went. Isabell was quite the complainer, and right at the start of the not so intense hike she was begging to go home- or go to the car- or go potty- or that she was hot- anything she could think of. She also insisted on holding my hand the whole time, while the dog kept tangling through our feet. What a circus, I am sure the other hikers were enjoying the comedy act. When we got home, William's Foundation for Blind Children Therapist was here and William was very much enjoying his vision therapy session with Miss Amy from FBC. She is so sweet. William loves her alot. Amy sings to William, sometimes brings her guitar and he really loves the sounds and vibrations of that, and Amy also always has the coolest light up toys. William's favorite things are cool light up toys. I am so glad we get services from FBC. After Amy left we just hung around the house all afternoon while Isabell got in another couple hours of Pink Car driving in. Tiffani left at 5pm, and after that Isabell and I went out in the backyard and sprayed off the back patio porches. They were so dirty! It is so clean out there now, and I am wanting to plant some plants and flowers. I didn't get with the program and plant anything in my garden so it is looking sad out there. My Plum tree and Apricot trees are flowering and getting leaves and my chili plants are thriving good as ever. But that is all I have- a couple trees and a couple chili plants. Boring! After it turned dusk outside, we came in and got cleaned up and put our jammies on. I read Isabell half of The Cat in the Hat and she passed out. William has been asleep for several hours now- I hope he's not up all night. Wish me luck!

We are missing daddy, but we have talked to him every night. Isabell has her sad moments where she misses her daddy and it breaks my heart. I hate that Richie has to work so far away from us, but we are all doing ok. We look forward to daddy taking a few days off work and coming home soon. We love him tons! Richard Leon- you are the Best Husband and Father EvEr! :) Bear Hugs from me and the kids! :)

Photos of our week so far...

I can't believe it's March! :)

How nice March 2012 has been for us!

• On Friday March 2, 2012 Richie flew home late so he could join us for the Ryan House Run. William was still in the hospital with a plan of discharging on Saturday the 3rd. We had a very busy weekend ahead of us! We got up early Saturday morning.
• Saturday March 3, 2012 was a Big day. We got up early and went to the Ryan House Run. We had alot of participants that joined in on the fun with Team William for the Ryan House Run. William;s Physical Therapist Denise Labriola ran the Half Marathon (and got a special medal), and William's previous physical therapist asst. Ashley Millikan ran the 5K, along with a family friend Jerry Baker who ran the 5K- and he finished first in his class and got a special medal! Team William started our fundraising campaign in late January 2012, and we ended up fundraising over $$$7,500 for our beloved Ryan House. We were the top fundraising team for the second year in a row! If you aren't familiar with our beloved Ryan House visit www.ryanhouse.org for more info! If you ever have a few bucks to spare, Ryan House is an amazing organization to give to. After the Run, Team William met up at my moms house for lunch and drinks. After we ate lunch and visited with our company, Richie and I went to PCH to get our Prince William! William was still needing alot of oxygen support, and we had planned on just discharging and going home on a much higher flow of oxygen than normal. He is normally on a flow on 0.25-0.5LPM and he was needing around 3.5-4LPM. That is alot more oxygen support then normal, but after his 16 day hospitalization and illness it may take him alot of time to get all the way better and may take some time to ween his oxygen support. When we got there, one of our doctors came in and told me that they did a chest x-ray on William and it looked like he had a pleural effusion on his left lung.This means there appeared to big a big fluid ring around his left lung, and big fluid rings are not good as they can cause a pneumonia or worse. Sometimes a pleural effusion has to be drained with a chest tube that is placed through the chest and into the lung to release the fluid. And another concern that arose during that chest x-ray is that it appeared that William's broviac catheter had moved slightly and it appeared that the catheter was in William's heart tissue. This is not good because the catheter can and could start eroding away the heart tissue. So a couple of things we needed to do to re-assure that there was not a pleural effusion and to ensure that the broviac catheter hadn't moved. So to check out the pleural effusion with better technology, we called for an ultrasound of the lung. An ultrasounds images are more advanced that an X-Rays image. The ultrasound can measure the fluid, and get some better information about the fluid ring. After the ultrasound tech came and did the ultrasound, the radiologist read the ultrasound and explained that the pleural effusion was not that bad- and that he should be fine to go home with some breathing treatments and CPT Q4 while awake. The radiologist took a peek at the images of the possibly shifted broviac catheter and said that the catheters position was fine. So with all our bases covered, we were given the go ahead to discharge! We discharged on 3.5LPM of oxygen, and I was comfortable with that and I had a feeling he would gradually over time need less oxygen when we got home. So we bailed our Prince William out of that place, and brought his cute little butt HOME! Isabell was so excited, and we had a great Saturday afternoon together. Bye late Saturday evening I had William on 1LPM of oxygen, and his blood oxygen saturation's were a perfect 100%. He just needed to be HOME! What a great day Saturday was.
• Sunday March 4, 2012. We had to get up early and take Richie back to the airport so he could return back to work in Houston, Texas. We were not ready for dad to leave! Then on Sunday afternoon my friend Jena and her husband Dirk and their little boy Harper came over and made us dinner. We had a nice afternoon, Dirk used our smoker to smoke his own homemade cured bacon! I gave Dirk a bunch of jalapenos and chili's from our chili plants and he's going to make jalapeno jam out of them! If he hasn't already!
• Monday March 5, 2012. William's home nurse, Tiffani was able to come care for William. William was so happy and had such a great day. Isabell went to school, and had a fun day she said. Although, her teacher sent home a note in her communication report that Isabell wasn't following directions that great in class! This was the first report home of such nature in Isabell's school career! Later Monday night in the middle of the night, Isabell woke up sick with a cough and gagging vomiting. I was up with her for awhile, and had to change the bedding! William slept through all that, luckily! William's oxygen needs had improved even more and I had him on a flow of 0.25-0.75LPM which is his usual baseline. I am so happy that William is feeling so well! He was so miserable when he was in the hospital. I hated seeing him so miserable. He is back to his happy, giddy, sparkly, amazing self.
• Tuesday March 6, 2012. I kept Isabell home from school since she's getting sick again! We had a great day- we just stayed home in our jammies all day!
• Wednesday March 7, 2012. I kept Isabell home again, she has a gagging cough. Her ears are clear, I was worried about an ear infection. She hasn't had a fever, I just hate that shes not feeling great, and I don't want her to miss out on alot of school.
• Today- William had his first outing since he got out of the hospital, Tiffani Isabell and I went to eat lunch at Fuddruckers. We had flyer- 20% of our bill went to an organization called "Branden needs a kidney transplant". Branden is a resident of Phoenix, AZ and he is currently needing a kidney transplant. Follow his story on Facebook- Branden needs a kidney transplant.

I am missing my husband, but I am also glad that he has such a great job. I couldn't be a luckier mommie, and wife. My wish is just that we could all be together everyday!

I hate February's!!

February has been a long month for the Leon Family, even though it is the shortest month of the year! On the 8th, William was feeling kindof miserable so nurse Tiffani and I brought him into the PCH ED to have him checked out. He wasn't tolerating his feeds, and had a week long battle with constipation then diahreah. This was unusual because we had not changed anything- his meds were the same, and his feeding regimen did not change. Since we had not changed anything, I was wondering what was going on in William's tiny body. When we got to the ED, we had some lab work done to check for dehydration. His electrolytes looked OK, but we were admitted for observation. We got William some IV Fluids, and slowly got him to tollerate his G-Tube feeds again. we discharged on the 9th, the next day.

Richie had been working in Arizona since October 2011 after spending nearly 2 years in California working with a company called Mass who specializes in Light Rail. Late December Richie took a job in Chinle, AZ on the Navajo Indian Reservation. When he is traveling for work, he stays in our fifth wheel RV AKA his Home on Wheels. There were not any decent RV Parks,  restaurants or grocery stores in Chinle and the closest RV Park with full hookups that was decent enough to stay at was in Gallup, New Mexico (100 miles away). The kids and I had been traveling up to the Arizona towns Richie was working at so we wanted to park our RV somewhere where the kids and I could come visit. But it ended up being more trouble than good- Richie was working 7/10 hour days and driving 2 hours to work in Chinle, and then driving 2 hours after work back to the RV in Gallup. He would leave before dark, and get in after dark! While working in Chinle in January, his old superintindant from Mass called him and offered him a position as Forman with some other great incintives- yet the position was in Houton, Texas. The superintindant wasn't going to need Richie to go to Houston until February 20th, so we had some time to think it over. We weighed out our pro's vs. con's and even though he would be taking a job so far away from home, there were more pro's than con's for him to take the position. I really like when Richie is working on the Light Rail systems with Mass- one of the reasons being that working as a Journeyman Powerlineman is one of the most dangerous trades in the nation. They work and manage high voltage electricity, climb high heights on power poles to assemble the high voltage lines, and some work is done while flying into work areas via helicopter. I like the Light Rail because most of the work is done while un-energized (almost eliminating the risk of accidental electric shock and death). But Richie will still be working on large line trucks on the train tracks assembling the Light Rail Poles and stringing all the wire and still needs to think safety! And to be offered the position as Forman is so nice. All the people with Mass Electric really love Richie, so it is really great that he got this job offer.

Everything was going pretty good, and then William got sick again on Thursday February 16th with vomiting, fever, and increased oxygen needs. Ricbie was home in transition between his Chinle job that he had just gotten home from- and getting ready to drive to Houston with our RV in tow on February 18th. So Richie and I took William to the ED at PCH and when we drew labs, everything was negative for infection and his electrolytes were OK- but we started IV fluids and he kept needing more and more oxygen so we were admitted to the Pediatric ICU and we were in the PICU for 7 days. All labs continued to come back negative for infection, thank goodness! But as the days went on, his electrolytes were all out of wack and he was requiring some electrolytle replacements and he was needing lots of suctioning with almost unmanageable secreations. Needing alot of one on one care. Richie did take off to Houston on Saturday the 18th and he made it safely and is all settled in for now. William got out of ICU on Friday February 24th and he is doing better yet still needing alot of oxygen support. I just want him to get all better, I want hime home! My mom has been keeping Isabell while I am at the hospital. I have been trying to come home every night and stay at home to be with Isabell and get some rest. William has had some really great nurses and they are all taking such great care of hime and actually letting me get a little break at nights which is nice. Spending so much time in the hospital is super tiring, especially when I want to be at my best as William's best mommie and advocate. I also want to spend as much time as I can with my Isabell, because this is hard for her too. She just wants Bubba home, Mommy home, Daddy home, and Uncle home. She gets a little emotional sometimes, and I don't want her to feel sad! I know it must be so hard for her, her daddy works on the road and shes the biggest daddy's girl AND mommy has to tend to William alot. What a perfect little girl I have, who deserves the world. We just love her more than we can believe! Having the two special kiddos we have leaves us amazed daily. We may not be together all the time, but we are one tight family.

Ready for February to end.

Situation at Hand!

Today I got some news that has my mind racing regarding Isabell's "teacher situation". I'll break it down...

• As many of our Leon family fans know, Isabell has special needs that include and are not limited to Developmental Delays, Physical Delays, and she is hearing and visually impaired. She was born with a heart abnormality called a Vascular Ring and underwent cardiac surgery April 2011.
• At age 6-9 months of age Isabell just was not meeting some of her developmental milestones.
• By age 15 months, she was still showing signs of slow progress. She didn't fully sit up until she was 8-9 months. And she had just started crawling at 14 months. She also wasn't saying any words. Not one. She was so incredibly happy, and such a sweetheart with a voice but didn't say words.
• By that time, Age 15 months- I started to wonder what I could do for Isabell.
• I learned of Arizona Early Intervention
• I called and inquired about Early Intervention for Isabell, and an evaluation was scheduled.
• When therapist (I still know her name but not sure of her spelling) Hailey McMackin with Early Intervention came out to evaluate Isabell and ask questions about her she wrote a report and I later learned that Isabell qualified for Speech Therapy, Occupational Therapy, Physical Therapy and Developmental Specialist therapists. And we got an IFSP.
• Her first DSI was Claudia McLaughlin! We loved her. Claudia introduced us to Sign Language and Physical activity fun in the grass.  Playing with blocks, and learning new textures and a favorite was shaving cream. She gave us fun and new art and craft ideas. These are all things that Isabell needed lot of specialized attention for. Isabell benefited from therapy tremendously.
• At age 3, Arizona Early Intervention kiddos are re-evaluated and if they qualify their file is transferred over to the DDD office and the kiddo goes to a special education pre-school within your home school districts elementary school.
• At age 3, Isabell DID qualify for pre-school and started November 2008.
• Isabell went to preschool for the school years 2008-2009, 2009-2010, 2010-2011. So three solid years of special education preschool. With weekly and/or daily therapies and instruction from a special ed teacher, Speech Therapist, Physical Therapist, & Occupational Therapist. Isabell made amazing progress. In the 2010-2011 school year Isabell's teacher was Miss. Bethany Kurz and along with Isabell's speech therapist Ms Bryna Cruz and School Audiologist a few tests were done and we got concerned about Isabell's hearing. So Isabell had a sedated hearing exam performed that identified that she is mild/moderately hearing impaired.
• At the end of the year, Isabell's school psychologist, teachers therapists and I sat down for our IEP Kindergarten Transition meeting. The teacher that was going to be Isabell's Kindergarten teacher also sat in on the meeting. At the transition meeting we discussed that Isabell would benefit from a special education classroom setting and our district offers a program called the PALS program. I am not completly sure what PALS stands for, but its a specialized special education class for functioning special needs kiddos. After learning of the PALS program and meeting the PALS teacher Miss Michelle I fell in love with the idea of the specialized program fpr Isabell.

Ok so fast soward to Kindergarten! This school year... 2011/2012.

• August 2011 came and Isabell started Kindergarten with her IEP in place receiving services from her PALS class, ST, PT, OT, Integrated PE, and sees a hearing therapist.
• There were 3 teachers- Miss Michelle who was pregnant and due in November who was the actual special education PALS teacher, student helper Tori who was pregnant and due in September and student helper Mr. L.
• In September student helper Ms. Tori left on maternity leave not to return so she was replaced by student helper Miss Carrie.
• In September I had an IEP meeting with Miss Michelle and all our peeps.
• In October- a week before Miss Michelle went on her maternity leave the new replacement special education PALS teacher Miss Amy was introduced to the class. Miss Amy was hired on with intentions of being a temp substitute for Miss Michelle in the even Michelle returns back to finish out the school year after her maternity leave. And if Miss Michelle was not going to return to work then Miss Amy would be accepted as the full time replacement.
•   Miss Michelle later announced she was not coming back this school year.
• Sometime in October Mr. L was transferred to another class so a new student helper Mr. Brad was introduced to the class.
• Things were really going well with Miss Amy and her new structure to the class. She had the kids on an amazing system that worked, and I was seeing more developmental progress in Isabell since Miss Amy has been her teacher. I really liked the way things were going.

Until today...
I got information that Isabell now has another teacher and that Isabell's school/district/board or something to taht effect have dismissed Miss Amy from the class.
I learned that the reasoning behind this was a budgeting reason. It's cheaper to hire a substitute than pay a permanent teacher. I guess the district thinks that since it's this late in the year that it doesn't matter and they can save a buck or two.
Well here is my immediate concern.

• Isabell and her classmates are all special needs kiddos.
• The maximum amount of students in the PALS program should not exceed 12 students.
• These kiddos all require lots of re-direction and special instruction which leads to the PALS class needing and utilizing 2 student helpers. So that makes a total of 3 adults in the classroom per 12 students (if and when there aren't any absences!)
• I have seen Isabell and her PALS classmates in action and I have observed instruction on occasion. The 3 adults in the classroom work to their fullest capabilities to keep their 12 students on task, and needless to say there is never a dull moment. With these children that need so much instruction and attention, the 3 adults in the classroom work harder than a busy construction crew on most days. All to manage My DAUGHTERS SPECIAL NEEDS along with her special classmates.
• I feel like these children with such a high demand in Special Education that have such a promising future deserve flawless structure and stability.
• Since Kindergarten began for Isabell in August- Nothing has been flawless. There has been so much instability, change, and too many teachers filtering in and out of that PALS classroom.
• I am very passionate about providing the very best for Isabell, and making sure all of our goals are being met.
• I feel like our district or deciding board on making yet another teacher change to the PALS program is a blow to the balls to Richie an I as Isabell's parents. Does this mean that our daughter has to suffer because of  budgeting issues?
• These kiddos don't understand all this change, and they don't deserve to be brushed under the rug.
• I would really like to meet the Governing Board or whoever made these decisions. I want to meet the person/people that have allowed the 2011/2012 PALS Program to become such a disaster- and who is continuing to let it be a disaster. I want this person to try and make me understand the reasoning as to why MY DAUGHTER, MY amazing perfect daughter is getting ripped off in the matter of her fucking education. Let's be real, and I'm being real. Isabell is getting fucking robbed of all her potential that I have WORKED my ass off in trying to make sure I maximize her life and education to the fullest extent.

I have alot of questions, and I need answers. I need to observe instruction with the substitute and make sure Isabell's IEP needs are being met as her IEP is a legal document and if they aren't following that document then they are breaking the law. I wish I understood all there is to know about DDD and IEP's, and all the rules and regulations. I wish I had my own personal liason who knows all this info at my beckon call!
I had a quiet week planned, but now it looks like it's going to be filled with meetings with Isabell's school, the district and anyone else that I feel necessary.

Any advise on this matter is welcome.

Team William 2012

We are excited for Team William's 2nd annual participation in the Run for Ryan House @ DC Ranch on Saturday March 3, 2012. There is a section in the registration area to email in and explain why You Run and Participate in the Run for Ryan House event. hre's what I had to say!...

Team William 2012

Well HELLO! I am writing to tell you why we RUN and PARTICIPATE in the Annual Run for Ryan House at DC Ranch. My name is Crystal Leon, and we have formed a special team to participate in the annual event for a very special little boy, my son, William George Leon.

William George Leon was born on November 3, 2009. Leading up to William's birth, we knew William was going to have some health complications. He was only 2 pounds 14 ounces and 14 inches long at when he was born at full term. Our medical team discovered that William had several birth anomalies, and no blood test determined a specific syndrome. We were left to identify all of William's anomalies, and provide medical treatment. On his day of birth, a PCH Neonatologist had a very uneasy conversation with us regarding William and his health condition. He told us he could not make any promises, as he did not know what our new little babies outcome would be, but rest assured that he was going to try everything in his power to do what our baby needed. He was in the PCH NICU for 8 weeks, growing and receiving medical treatment until he as strong enough to go home. During those 8 weeks, we did alot of learning and preparing to take our new medically fragile baby home, and care for him on our own. Our little baby boy was born with several rare anomalies which include and are not limited to cysts on his brain, a coloboma on his left iris, cleft pallet and he is unable to eat by mouth leaving him 100% tube fed, had 4 holes in his heart but over time 3 of the 4 holes closed up and the remaining hole called an ASD (Arterial Septal Defect) in the top portion of his heart is causing him to have a mild case of pulmonary hypertension, fused horseshoe shaped kidneys with cysts on them which are functioning normally other than high blood pressure, and has a hypospadious (A deformity of the male parts) and in which his male parts are functioning properly. When we were sent home, we all did not know what to expect for William;s growth and development but we always hope for the best.

Over the last 2 years of William's life, he has endured 20 hospitalizations and 14 surgical procedures at Phoenix Children's Hospital. He is full care, does not walk, talk sit up, eat by mouth or use the restroom. Most of his hospitalizations were related to respiratory distress until one of his last hospitalizations which resulted in respiratory failure. At that time we had a trachestomy placed into our baby's airway and he had to use a ventilator for breathing support for some time. With all of William;s medical needs- it takes someone to care for him around the clock. Tube feedings, vitals, monitoring, suctioning and maintaining his airway, maintaining many forms of medical equipment and oxygen. Essentially I sleep with one eye and one ear open. We do have a home nurse that comes to help with our little William's high medical demands Monday-Thursday. Those days are the greatest, and I love having the help of a Pediatric Home Health Nurse. Other than the short 40 hours a week that we have a helping hand around the house to manage our medically fragile baby, we get no other breaks. Its full time 24/7/365 care that we as parents have to provide to our son. William's medical needs can limit where we go and what we do depending on how well our little man is doing. We can't just hire the neighborhood babysitter to watch him because anyone that cares for William has to know and understand his medical needs and be able to manage that. We virtually have to keep an eye on him at all times, to ensure that he remains stable. If all of his medical needs aren't met properly he could become very sick and in his limited and compromised health condition the smallest common cold can be compared to a severe bout of pneumonia for William.

In August of 2010- we learned of Ryan House. After touring, William had his first Ryan House Campout in October of 2010. After utilizing Ryan House and discovering all the greatness it has to offer along with meeting some of the most AMAZING health care professionals that are a part of Ryan House we as a family felt like there was a small weight lifted off our shoulders.

 -You mean to tell us that you are going to care for my child, make him comfortable, administer meds, manage his tube feedings, central line care, trach care, and other site care? Bath Him? Play with him? Read him stories? Bring in volunteers that have pet therapy Doggies? Let us REST undisturbed in the Family Suite? AND our whole family can come along? Is this a dream or what!? You call this a short period of Respite- this is HUGE! More than a short break- its rejuvenating. It's like wiping the chalkboard clean. Starting the day fresh. After getting this short period of Respite provided by the AMAZING RYAN HOUSE we feel like we are on top of the world. Caring for our child's high medical demands on a daily basis is very tiring, and something we cannot slack on.

We are super proud to be William's parents, and we are participating in the annual Run for Ryan house to show our appreciation for what Ryan House has done for us. Ryan House is an amazing line of support for our family! We are fundraising with high hopes of reaching our goal- Last year Team William was the #1 team in fundraising as we had the highest dollar amount raised by a team! Ryan House is great resource for our Arizona community who have children with life threatening and limiting conditions. We are thankful to be a Ryan House Family. Thank you Ryan House!

Sincerely,

Richard and Crystal Leon

One Busy Family

It's been another long while since I have sat down and blogged. We have alot of updating to do! The past few months have been great. Lot's of good things going on. I'll break it down...

• September 2011- William had been doing so well, that he no longer was needing his ventilator for breathing as of late August 2011. He is just doing so great. As of late August, we had a follow up appointment with our PCH pulmonologist, Dr. Woodward scheduled for September 26, 2011. Since we had stopped utilizing Vent Support for William at home, I wanted Pulm to see William sooner than 9-26 since he had some wonderful changes in his health- he was breathing on his own, and not requiring oxygen. When I called the clinic, they were fully booked and busy and could not see William until our pre-arranged follow up on 9-26. At that time, our Pulm nurse got orders from Dr. Woodward and over the phone she told me that Dr. Woodward recommended letting William sprint for 5 minutes, twice daily. (Sprinting means breathing on his own, without the vent). I kindof laughed, and said OK! Meanwhile, William was breathing great on his own- other than me monitoring his CO2 levels, I felt he was breathing like a champ, saturating beautifully, and being the tough little man that he is- breathing on his own with NO vent support. SO 9-26 finally came rolling around the corner, and we had our PCH Pulm follow up. At that visit, I wanted to address William's new needs and I also wanted to inquire about a Ventilator called a Trilogy 100 as we were using an ancient dinosaur vent called an LTV 1000. Great vent, as it helped my child to breath- but the Trilogy was so much more technologically advanced. SO When I seen Dr. Woodward, who has a somewhat dull approach, seemed pleased that William was not requiring his vent, but he did do a short CO2 End-Title test while we were in the office and William's CO2 while ASLEEP was on the high end of normal. SO Dr. Woodward recommended at that point that William would benefit from being vented at night only, to help lower those CO2's. OK, so fine, we can do that. SO I asked about the Trilogy, and with no question he put in an order for the Luxurious Trilogy 100. A week later, we got our Trilogy 100. Our LTV 1000 was very loud, bulky weighing 17lbs with a travel battery that weighed 35lbs making it a total of 50lbs of vent equipment to lug around each time we left the house. At night, it was so loud, and the beeps were so annoying. Awe, it was a nightmare dealing with that old bastard. The new Trilogy 100 vent is virtually silent, and so much more gentle on William. SO much nicer to deal with, so luxurious in the world of being a Vent Mommie.
• October 2011- On 9-30 William got a little fever. Since he has a Broviac (Central Line IV) that is a High risk, HUGE risk for infection- each time he gets a fever we HAVE to go to the ED and get blood drawn to check for a potential line infection. UNFORTUNATELY on 9-30 when William got his fever, his blood work identified a line infection. We manage William's Broviac with such sterile care, it was a huge shock, and disappointment to us. We take such pride, and extra special care to manage all of William's special health care needs, and we keep him so clean so that he doesn't get infections. Our medical team encouraged us to keep doing what we are doing, and to continue being extra mindful about the Broviac line care. WIlliam was admitted for treatment of IV antibiotics, and observation until 10-5. We discharged with IV antibiotics and William was doing great. On 10-11 Richie got an opportunity to take a job in ARIZONA! He had been working in California for nearly 2 years, and to work in Arizona again would be awesome! The job was in Williams, AZ near the Grand Canyon. On 10/15- Isabell got in the truck with Richie, and I loaded William up in my tahoe, and we followed Richie while he was towing our RV to Williams. This was our William's first time out of Phoenix! We were going up to help Daddy set up, and  I had to come back home with the kids on 10/16. We all had a great time on our outing to Williams. With the elevation change, William was needing 3LPM of Oxygen- and I fired up the vent for safety precautions. I wanted to make sure he was tolerating tghe elevation change. On Sunday 10/16 Richie had his first day of work, but the kids and I noticed that the Grand Canyon Railway was doing a Pumpkin Patch train ride. It was a for Halloween, and they had a secret pumpkin patch hidden in the Williams Forrest only accessible by train! So the kids and I checked it out. When we got to the Train Station, the staff was incredibly nice and accommodating. I had my togo PICU. Vent, Oxygen, medical supplies and equipment along with my Trach/Vented William and sister Isabell. Everyone at Grand Canyon Railway were very nice, and super helpful in loading us into the train car that had enough room for all or crap. When we got to the Pumpkin Patch we picked out our pumpkins. It was a neat experience riding the old train and spending time with my kids. We ended up going to Williams the weekend of 10/21 and 10/28! My kids are such great little travelers!
• November 2011- Our Fighter, our Bubba, our Buoiii, our Boodie, our Prince William, Sir William, Our Sweet William turned 2 on 11/3. It was a great day, and what an amazing and trying 2 years it has been. It is so amazing to see what my little baby has gone through, yet still be the happiest most content little dude on the block. To see my sons bursts of excitement, his bright smile, and his personality shine like the sun brings joy to my life on a daily basis. The developmental progress he has made despite all of his unfortunate conditions is 100% amazing on every level. He makes me so proud, and I fight damn hard for him. I fight damn hard for both of my amazing kiddos. On 11/14 William had a follow up Fluoroscopy which is an X-Ray recording of the Diaphragm function. He had a Fluorscopy in June 2011 which determined that Williams Diaphragms appeared to be paralyzed. Which is why we chose to have the trach placed, so he could receive vent support since his diaphragms were paralyzed. The follow up exam showed that Williams diaphrahms were moving amazingly perfectly without any dysfunction. SO no wonder William was not needing vent support! YAY! On 11/16 was Richies birthday. He was in Williams working, but we celebrated in spirit! On 11/23 my Amazingly sweet, beautiful, special, unique, Happiest of the Happy Miss Isabell AKA B-Bell turned 6!!! SHe has provided the best 6 years to us as parents. The last 6 years have been nothing but Happy, and Silly times that I will remember and cherish FOREVER! This little girl of ours is one of a kind. Holds no judgement toward any. Is a sweet friend to medically fragile children as she understands them and others do not. Is a breath of fresh air. Brings a happy smile and carefree moments to our life with her contagious giggle. Is always begging for "more" as she giggles her butt off. Anything and everything is funny to B-Bell. She loves to ride the bus to school. She is the star student in her class, of course. She has set a fashion statement with her hearing aids and glasses. They are PINK. She wears school uniforms, yet all of her teachers and staff at her school tell me she is the Best Dressed student- makes me smile! They also tell me they can tell Isabell is really loved- makes me proud! She's caring. She's sharing. She's giving. She's SPOILED! What else could I ask for? I am in complete bliss and considerer myself the luckiest mom in the world to have a daughter like B-Bell. I have so much LoVe for that little thing! And to move on- Thanksgiving was Yummy. We had a small gathering at my moms house. She made dinner which was like I said, Yummy. Thank you Mom and Tom!
• December 2011- The month went by super fast. After William had his Fluorscopy in November, PCH Pulm Dr. Woodward did not get back to me with the results for over a week, and when his trach and airway nurse called me with the results and said Dr. Woodward still wants William to be vented at night while sleeping (Um, Ok- we are not using the vent at all!!) and that we should follow up in February 2012. I'm not sure if PCH Pulm is understanding, but William is not using the vent- so I needed orders for this. Dr. Woodward was not very pro-active, or at least not as pro-active as I need a physician to be that is aboard Team William. So I called another pulmonologist in the east valley by the name of Dr. Kelvin Panasar. I was seeking a second opinion of recommendations for William's respiratory condition. He had an opening for a new patient consult on 12-2! He was glad to meet us, and immediately connected with us. He has a bright personality, and listens carefully. He was impressed that William was off his vent- and to make sure his CO2 levels were staying within a safe range, he wrote an order for a CO2 monitor for HOME! This is a monitor that monitors his CO2 levels while he is sleeping. The monitoring we have done has been going good, and Williams CO2 levels are staying within normal range! The kids and I went to the Ryan House Christmas Party on 12/9 and it was so nice. They had snow, Santa and Mrs. Clause, Hot Cocoa, Cookies, and even some holiday food being served by a chef! Thanks Ryan House for being "there" for my family and families alike. To make a donation to Ryan House Pediatric Palliative Respite and End of Life Care Home visit www.ryanhouse.org this is a resource that we utilize for our Prince William for short periods of Respite. Amazing place, Amazing people. We ended up having a Very Nice Christmas. Santa was good to our kiddos. Isabell got a Pink Cadillac Escalade from Santa and has driven it every day since Christmas- she is totally obsessed with her pink car.
• January 2012- Happy New Year! Richie got laid off in December and was off for most of the month. Then he got a call for work in Chinle, AZ on the Indian Reservation working 7/10's. The closest decent place to park our RV happens to be 100 miles away and it's in Gallup, NM. So he is commuting 200 miles a day for work- which is really tiring for him. They leave the RV Park at 5am and don't get back until 7pm. They leave when it's dark, and get back when it's dark. Other than getting off early a time or two- he hasn't really seen Gallup in the daytime. The kids and I went to Gallup to visit on 1/13 to 1/15. Gallup is not the most beautiful place in America, but not terrible either! From 1/19-1/22 William stayed at Ryan House and Isabell stayed at Grandma Jackie's. I was able to escape, by MYSELF, and go visit Richie in Gallup. He had to work each day, but I got a little away time. On Friday 1/20 I did absolutely NOTHING all day, as I layed in bed the entire day. I watched a movie, and seriously slept like I've never slept before. It was wonderful! The weekend was great, and full of relaxation. On top of that, the kids had a great weekend too. We aren't going anywhere this weekend, going to stay home. We 3 travelers need some home time!

Everything is going really well for us, and we are so thankful for that. William is growing like a weed, and Isabell is getting so grown up. I want to freeze time now. They are so fun right now. William is really trying hard to sit up, and is making so much progress. We now receive services through Foundation for Blind Children. Our FBC therapies have been really cool. Our therapist brings her guitar and sings to William. Really gets his attention, and he loves the music and singing. He has all his life, but lately we are noticing that William really responds to lights and music. It is really cool watching him respond to his environment with all his limitations. He amazes me. Sweet amazing boy he is.

We are missing Daddy, and we hope he can take a few days off soon and come home for some R&R and Family Time. He works so hard for us. Good days and bad days, he always keeps his calm. Always handles things one stride at a time. He is one hell of a family man. He's a strong man, with a gentle hand. Most amazing father to our 2 special kiddos. Has such a special bond with his kids, and thats all I ever wanted for my kids. To have a dad like they have. Mission accomplished, I am a lucky woman to be married to the best husband and father. I'm feeling pretty lucky right now. Yep, I'm a lucky gal :)

Let's make 2012 GREAT!