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!