Rockin around the Christmas Tree!

Photos of the last few months!

Happy Holidays!

June, July, August & September. So much updating to do!

William, Isabell, Richie and I have been rolling with the punches the past 4 months since my last blog update. We are doing well now, but in the past 4 months we have had alot of changes around here to say the very least! Let me break it down: (I like to make lists!)

• After our 18 day hospitalization in MAY for William we went home and were doing well for a few days. We were in the hospital from May 7th-May 24th, 2011 (last time I posted a blog update, in May was when we were at PCH)
• On May 26, my home health RN for William returned back to work after our long hospital stay. By Friday May 27th, William was becoming frustrated and angry with his Home RN and started needing increased oxygen flow. He did this for a few days, he would be fine and stable, then when his RN would arrive at 9 am, by 10 am he was having a fit. His fits were concerning his home health RN so much that she was basically begging me o take home to the hospital! I completely understood her concern from a clinical aspect- the kid was sounding wheezy, de-saturating needing increased O2. ut the draw back for me was the minute the home RN would leave at 5pm, William would get over his fit. I was able to turn down his flow of Oxygen, and he would turn back into his calm cool and collective self. So this went on for a few days, then I had the nurse not come in for a few days, and William did well. After I figured William would tolerate the RN, I had her come back. William was continually getting sicker and sicker. Each day was ticked off and angry. His pulmonologist (Dr. Drewek, among otehrs from the PCH Pulm division) had William on a prolonged boost of Lung Steroids to try and help him through his troubles. Nothing worked. He hated his home RN, and I wanted her help so bad and all he wanted was mommy. Richie was still working in California, and was leaving for Canada for a 10 day job on June 7.  As William continued to get sicker and sicker and I was recognizing that the lung steroids were not helping and his oxygen needs became greater and greater, I finally took him into PCH ED on Sunday June 12, 2011.
• On Sunday June 12, I had a long weekend with William- worrying about him as I watched him beginning to really struggle to breath. Hoping that he would just feel better. I kept thinking I needed to take him to the hospital, but I was trying my hardest to manage at home and keep him out of the hospital! His baseline oxygen flow is 0.2 Liters per Minute which is a very very low flow of oxygen. By Snday June 12 he was needing 1.5-2 LPM. Not Good! So I packed up, had my mom come get Isabell and I headed to PCH. (Phoenix Children's Hospital) Of course William was admitted, and to the 4th floor monitoring unit for overnight observation and to see what is up wit that increased O2 needs. He had no fevers or signs of infection so we were stumped.
• Monday June 13, 2011- a day I will NEVER forget, although I would like to. At 9:30 am, SWEET Nurse Lauren who was caring for William that day came in to check on William because he was de-saturating a little bit. SO she and I decided to suction him because he sounded junky. During the suctioning he de-saturated so low (to 26%) and we had to turn the oxygen flow to 15 LPM and Lauren called a Clinical Assessment Team Code which means the physicians close by, and physicians from the ICU evaluate the child to see if the incident was severe enough to transfer to the ICU for monitoring or if the child is ok. The team evaluated William, and he had recovered from his episode and they all agreed that if he did it again he needed to go to the Peds ICU for monitoring. Well less than 15 minutes later, he did it again and RN Lauren, PCT Stephen, and an RT who I don't remember I am drawing a blank and I rushed William to the PICU with a special oxygen mask on Williams face called Easy-Pap. We couldn't take that mask off his face, so the RN and PCT pushed the crib down the hallway, and the RT held the mask tightly against his face- while I led the way with our wagon full of stuff. We were finally up in the NEW PICU of the newly built PCH tower- on the 6th floor by 11:30ish. After the PICU team worked all their magic to relieve William- there was no doubt it WILLIAM WAS IN FULL RESPIRATORY FAILURE. Nurse Practitioner who I adore had a conversation with me that I never wanted to hear. It was a conversation where she proclaimed to me that her and her wonderful team of Intensivists, Respiratory Therapists and ICU RN's had done all they could do for William and he was not responding to the treatment at hand. She recommended to me that the best relief for William would to be intubated, and placed on a ventilator for breathing support until we figure out why William is in Respiratory Failure. I wanted anything that could help my baby boy, and anything to give him relief. I also had a brief little pow wow with one of my favorite RT's at PCH (Jimmy James) who has worked with William during several other hospitalizations openly and honestly told me that he felt the ventilator was a good idea. and he felt that William would be ok! That's ALL I needed to hear, So a huge THANKS to Jimmy James. I value that little convo we had moments before I gave the official "Go Ahead" to intubate my baby. 
• William ended up sedated and intubated for 11 days. Richie got home from his Canada work trip on June 17. After having many discussions with our medical team, and having some tests doe on William we discovered that William was not going to be able to breath on his own due to a severely, possibly paralyzed diaphragm. And we could keep him sedated and intubated longer if we wished to see if he would start breathing on his own, or go for the option of having a trach placed into Williams airway, place him on a home ventilator and get him prepared to go home trach-vented. So Richie and I decided that we wanted to go with the trach option. We hated to see him intubated, sedated, strapped down to the bed and miserable. We weren't really able to hold him, and every time he would move around or thrash around we would have to pump him full of Morphine, Atavan, Versed, Choloral, and he was on a continuous Dex drip which they kept increasing the dose, and had a clonodine patch. We hated hated HATED to see our little guy like this. It was the absolute roughest thing a parent SHOULDN'T ever have to see thier child go through.
• Saturday June 2, 2011 -Surgery Day- Our ENT Dr. Milligan agreed to take on the case to place William's trach sooner than later and came in for procedure on a Saturday!! What a guy. Thanks to intensivist Dr. Zorn WHO I LLLLOOOOOOVVVVEEEEEE and adore for arranging this for our William. We love you for all you do for our William while we are unfortunately inpatient at PCH's PICU. So anyhow, SURGERY went PERFECT! and it was sooooooo great and Fantastic, and WONDERFUL to see our sweet baby boys face, see him awakening from all the sedation, seeing a smile, KISSING his cheeks, and holding him for the first time in nearly 2 weeks. Richie and I were a set of Happy Parents that day. ANd our boy was a happy camper, and we immediately felt relief that we made the right decision to trach him, because he was already doing so well.
• Tuesday June 21, 2011. William had a Brain MRI, a follow up from last years MRI to track the large cystic space on his brain. We were hit with some very very very unfortunate news, and there were some unfortunate new findings on Williams MRI. He was diagnosed with BRAIN ATROPHY. Brain Atrophy is not a great diagnosis, it means that the brain tissue is shrinking. There isn't any evidence to tell us how progressive Williams Brain Atrophy will be, so we have decided to make sure we continue to provide him with the VERY BEST that we can, LOVE him unconditionally like we already do, CELEBRATE him every day, and make the BEST memories that we possibly can. We are not going to let his condition or handicap hold us back and we are not going to let this force us to be house bound. There are times that it is better we just stay home when William is sicker than other times, but on the good days we are going to be Up and RUNNING!
• Saturday July 2, 2011- William had his first trach change and we were transferred from the PICU to the 4th floor monitoring trach and airway unit to start our journey of learning all about Williams new trach, and vent and how to care for it. Richie and I ended up learning our new 'Stuff" so quickly that we discharged on July 14th!
• July 14, 2011- We had to ride in an ambulance for our first time home from the hospital after being trach/vented. (Hospital Protocol) It was fun! William did great during our drive home. When we got home, we unloaded and we were so happy to be home! We had already had our supply companies bring out supplies and oxygen etc so we already had everything we needed at home. My nursing agency also had an experienced trach and vent nurse available to meet us at home to help care for William, Her name is Tiffani- and we ended up LOVING Tiffani and asked her to be our full time nurse and it worked out that she was able to be our full time nurse! So she is with us Mon-Fri from 8-4 and she is more than great with our little Man William, and William LOVES her. We have not found a qualified nurse for the weekends, but I am hoping to convincee my nursing agency to let me use Tiffani on the weekends :)

So we have been home ever since, and William is doing very very great.

On August 29, Williams vent battery died when Tiffani and I were trying to get it plugged in- and William was doing great off the vent and breathing on his own. He was like a happy little jumping bean so happy to get off the vent. SO on the next day, I took him off the vent at 10am, and he was breathing on his own, saturating beautifully and in the happiest mood ever! So I left him off the vent until 4pm! The next day he was off from 8am-5pm. Then from September 2nd on- he has only been ON the vent three different nights! MEANING he has been OFF his vent and doing GREAT!!!

Now for Isabell! She started Kindergarten and is loving her teacher, friends and classroom. She gets ST, OT and PT at school and is a great participant I hear.  She loves to ride the bus and she is doing so well. Always the happiest thing ever, and I just love her. She has gotten a cold twice since school has started- I just cant seem to keep her from catching the damn things. You would never guess that she had cardiac surgery in April. I have her in a tumbling class at Swim Kids USA and she loves that. It is great for her lack of strength, stamina and coordination from her special delays. We were having a gal come out to our house 3x a week for private swimming lessons until Isabell got a nasty Swimmers Ear Infection and we had to stop the lessons :(

Richie is back in California for work, and we miss him so much! He is working bear Yosemite National Park. My goal is to get a plan together, and take a trip with Isabell and William out to California to stay with Richie. I hope we can make that happen!

I will try and keep up with my blogging and update again soon! :)

A few months worth of updating...

Hello to all Leon Family fans! We have been so busy the past few months and I have alot of updating to do! In advance I have to warn all readers that I dont have my laptop with me and I am blogging on my touch screen tablet and there may be lots of misspelled words!

Last time I blogged I posted info about the Ryan House Community Breakfast at the AZ Biltmore.  It was a great turnout and I adm glad  I was able to attend and glad to share William's story and show our community how important and how very dear Ryan House is to our family. Check out www.ryanhouse.org for information on the wonderful Ryan House.

February 2011-
William and I stayed at Ryan House Feb 22-25 so I could attend a 3 day Initiative for Pediatric Palliative Care Retreat- IPPC organization www.ippcweb.org. This was a learning retreat for all diciplines caring for children with life limiting conditions. It was an experience that I am so lucky to have been involved in. Learning together with parents of fragile children and clinicians ranging from physicians to nurses to social workers to child life specialists to chaplains. We all got together and learned from eachother- learned how we can BETTER serve and care for children and families caring for children living with life threatening medical conditions. I was invited to go by the Staff of Ryan House. I was able to meet some really great mothers going though similar medical issues with thier children. It was great bonding with other mothers who I could relate to.

March 2011-
•We had an ok and very busy month of March. William had trouble with his allergies and asthma starting on the 1st of March. He had to start lung steroids and pnemonia previnitive antiobiotics on the 10th after seeing Dr. Drewek with pulmonology. On the 16th we consulted with Dr. Leigh McGill to touch base on Willie's hypospadious repair reccomendations. Dr. McGill informed me that he is no longer doing difficult hypospadious repairs and gave me the information to the PCH Urology group and I have chosen to consult with Dr. Michael Ritchie. (we have not seen Dr. Ritchie yet!)

•On March 22 william and I checked into PCH at 8:30am for a Cardiac Catheterization. William was intubated at 11am, cardiac cath procedure from 11am-12pm, and extubated in the cath lab at 12pm (we expected William would need to stay on the vent a few hours and have to come off the vent in the PICU.), went to PACU for post procedure recovery where we thought we would be admitting into the PICU from there for a 23 hour post procedure monitoring since William is so fragile. In the PACU recovering unit, Willie was doing so well that after 6 hours of observation he was doing so well we were able to discharge that evening at 7pm after William's site of the cath was completly clotted off. I was so happy! My boy was doing so well and has gotten so strong and was able to recover from the procedure and anesthesia so much quicker than expected. What a Fighter Man!

•On March 25th we met with CardioThoracic Surgeon Dr. Jefrey Pearl for Isabell and her vascular ring. We made a surgical plan for her Vascular Ring repair and scheduled cardiac surgery for April 18, 2011.

•On March 31st Isabell had a sedated hearing test called a Sedated ABR and we confirmed that she has mild to moderate hearing loss and she is a candidate for hearing aids.

After the sedated ABR I was so sad for my Isabell because it was at that point we confirmed she wasnt hearing well. I just hated hearing the news that my sweet little girl wasnt hearing well and on top of that my husband and I were preparing ourselves for her cardiac surgery. This was a very stressful and fragile time for us and having my husband working out of state was incredibly trying and difficult for us as parents of 2 very fragile and special kiddos. We hate being apart from eachother especially when our kids are sick and needing so much medical attention. But are so proud of ourselves because we know we are great parents to our amazing kiddos and we provide the very best for them. I am incredibly proud of my husband for being the sole provider for us and I am amazed how he is such a great husband, father, provider and backbone of our little family. I couldnt do this without him. Although he has been working out of state for over a year he IS very much my children and I's strongest support system backed by the rest of our wonderful family who have been so amazing to us during lifes trying and fragile times. Times that we need support our wonderful family step up to the plate without asking and HELP.

April 2011
•On the 6th Isabell had a routiene teeth cleaning at the dentist and she did great! She was such a big girl.

•On the 11th we had our first meeting with MGA home healthcare and was admitted onto service ...for the first time ever we will have a home health nurse in our home for 32 hours a week to help care for William!! Also on this day Willie was still having allergy and asthma problems and we had to increase his lung steroid dosage... We were trying to ween him off :(

•On the 12th I had a meeting with Isabells phychologist, teacher and therapists for a kindergarten transition meeting!! I have enrolled her into the Tempe Elementary SMILES program which is a special kindergarten program we all think Isabell will benefit from especially with her hearing impairment and overall devolepmental delays.

•On the 13th We went to PCH audiology dept to order hearing aids and make ear molds for Isabell! Also on this day William and I followed up with his plastic surgeon to talk about cleft pallet repair. We decided to hold off on repair until William has full head control possibly summer 2012 since William is progressing so well. It is a huge airway risk to do repair now.

•On the 14th both kiddos seen Dr. Cassidy, opthomologist for the first time. Isabell is nearsighted -1.25 in her right eye and -.75 in the left and her left eye is completly out of focus so she wears glasses full time now. William is terribly nearsighted at -10.25 in each eye and his left eye wonders and he has 2 clogged tear ducts. He wears glasses full time now and will have an eye procudure for the clogged tear ducts at PCH on June 3.

•On the 15 I had to take Isabell tp PCH for a 2 hour pre-op appointment for labs, & X-Rays and we also took our first ever official tour of PCH.

Richie came home on the 15th to be home for the week of our Isabells cardiac surgery.

•On Sunday the 17th we took William to Ryan House for the week so he could be cared for by the BEST and spoiled rotten!

•On the 18th SURGERY DAY FOR ISABELL! We had to be to PCH at 5:30am. We woke her up and left her jammies at 5am we grabbed a blankie and Richie had the Tahoe loaded with our stuff for our week at PCH. Richie and I were feeling nervous and anxious for the day to get over with already! When we got to PCH we checked in and waited for 7:30 am to roll around so she could go to the OR. In order to help Isabell relax and not have any intence seperation anxiety from mommy to the nursing staff we gave her a dose of Atavan to slightly sedate and relax her. It was funny to see her so silly from the Atavan. She was laughing and slurring her words and was very relaxed. When we wheeled her down the hallway to the OR she was such a big brave girl and didnt cry! Richie and I were so nervous to let her go into the OR for her cardiac surgery!

After the surgery which took about 2 hours the surgeon met with us in the PICU family center to give us an update that everything went very well in the OR, The anestheologist had already extubated her and it would just be a little longer while they got isabell set up in her ICU bed and we could finially see her. We waited for a little while and I walked over to the ICU doors and the nursing staff let us in. I immediatly had tears flowing- Isabell was doing very well but was hooked up to lots of stuff and was very sedated. She had a right side IntraJugular IV line, an Arterial IV line in her right arm and 2 regular IV's one in her left hand and one in her foot. She was hooked up to cardiac monitoring, a pulse oxcimiter, and had a chest tube to drain lymphatic drainage from her left lung which was deflated and moved out of the way for the surgery then re-inflated after proceudre. It is very common to have a chest tube or tubes after cardiac surgery.

The rest of the week went well and Isabell had super human healing powers and recovered so well. She was walking around Tuesday, the day after surgery and eating and playing. We also ended up having a very stressful series of events occur that evening. Unexpectedly that day we were told that Isabell was being transfered out of the PICU and to the monitoring unit here at PCH. A nurse or a staff member of the cardiac ICU was supposed to transport Isabell to the 4th floor at 3:30pm. Her nurse was assigned to another patient and she rushed into Isabells PICU room, unhooked all of her cardiac  monitoring and quickly rushed away to her new patient. At 6pm I recieved a phone call from my husband stating that they were still sitting in the PICU and nobody had even checked on them or transported Izzy to the 4th floor. I was at Ryan House with William trying to prepare dinner for us to take back to PCH and play with Willie. So I called the PICU charge nurse by the name of Lauren, CS for PCH PICU Pod E. I explaimed the situation and I was very disturbed that isabell had gone so long without care, monitoring etc in the PICU so I was demanding an explaination from Lauren as to why my daughter was just left alone in the ICU going on several hours. She proceded to undermine my husband and rudely asked me why he didnt push the call light for the nurse to check on her and notify someone she was there. I was so pissed off and I told her its not his freaking job to do.that and that my daughter was in the Pediatric Intensive Care Unit at PCH and that a half way decent charge nurse would have kept track of her patients better and to go in the room and explain to my husband what in the hell is going on. So Lauren sent a PICU PCT into Isabells room to promptly transport Izzy to fourth floor without offering my husband an explaination as to what was going on. I was even more pissed off then! So I called Lauren back at 7pm to ask her what and why she didnt talk to my husband. She rudely asked Me what my concern was And I very aggressivly explained to her that my freaking concern is that my daughter had been un-cared for in the PICU for over 2 hours and she just had cardiac surgery and that things like that Do Not happen in the PICU and charge nurses Do Not loose track of their patients etc etc etc and I told her she was a terrible charge nurse and that I was embarrased for PCH to have such a nurse in charge of the cardiac ICU and I did not approove of nor appreciate the way she handled this case and I told her im taking her actions to the administration of PCH. And I did. I filled out a 5 page incident report, and had a meeting with Laurens boss. That night when isabell was trying to get settled into her new room on the fourth floor her pain spiked and she became distressed and her oxygen levels dropped to 85-88% & she needed oxygen for a little while and needed a coctail of morphine, atavan and tylenol for her pain and discomfort. I strongly believe that she would have not become distressed if she had been properly cared for and monitored in the PICU. When the distress happened we had to play catch up and get her stabalized. She ended up having a good night. The third day after surgery Izzy was playing in the playroom at PCH and roaming the halls-chest tube, monitors and all! Then at around 3:30pm on that Wednesday afternoon Dr. Pearls NP came in and removed Izzys chest tube and then she was a free woman except for the monitor she was still hooked up to and 1 IV line incase we needed IV access.  She did so well, Richie and I were so proud of how brave she was during her entire hospitalization. She never cried once, with the exception of whining a little bit when she was scared or in pain.

We picked up William from Ryan House on Thursday the 21st after Isabell was discharged and he had a GREAT week. It was great to get home! We had a long four days at PCH.

May 2011
•On May 3rd our little William reached his 18 month birthday! What an amazing little guy!

•On May 5th Isabell got her Pink Hearing Aids!!! What a world of difference I seen in her the very second we put the hearing aids on her. She can hear now!

•On Saturday the 7th William woke up at 2am vomiting and had a fever of 105°. We immediatly went to the PCH ED and we were of course admitted. Willie was dehydrated. His labs showed that his sodium was very low and his pottassium was very high. With Williams complexity, this dehydration really has him down and is taking him a while to recover.

•On Tuesday the 10th was the Ryan House Community Breakfast event and Shannon Rummel my mom and I attended along with over 600 attendees! What a great breakfast event. Again, learn about Ryan House at www.ryanhouse.org

• On the 12th Isabell had a follow up with her cardiologist and he gave her two thumbs up! Dr. Ellsworth will see her once more in six months then he vb plans on sighning off! She is fine from.a cardiac standpoint now. She will always have a heart defect but it has successfully been surgically repaired! So exciting!

•Today is the 20th and we are still at PCH with our William still recieving much needed treatment and being closly monitored. His brain, pituatary gland, kidney and adrenals have suffered from a couple things-being on lung steroids for 2 months straight and the dehydration. So we had to call in another specialist to be a part of our medical team... We now have an Endocrinologist on our team to monitor Willie's adrenals. Nephrology, pulmonology, endocrinology, G.I. And our pediatric surgeon have been active particapants during this hospitalization. We have 16 physicians following Willies medical case for all of his complexity. He is a special one!!!

Well I started writing this blog at 8am. It is now 6pm and im finially finished. Its been a busy day and I only have little bits of time to blog. If I had my laptop it would have been easier!!

I will try and update again sooner than later!

Ryan House Community Breakfast May 10, 2011

Imagine providing care for a child with a life-threatening condition for 24-hours a day, seven days a week. Now imagine having to provide for your family, raise two other children and take care of your sick child. Unfortunately this is the reality for thousands of families in Arizona. Ryan House Community Breakfast will be held on Tuesday, May 10, 2011 at the Arizona Biltmore Resort and Spa. This annual fundraiser allows us the financial support to continue the much needed services provided at Ryan House.

Until recently, there was little help for these families, but in March 2010 Ryan House opened its doors, unveiling an oasis of respite, filled with understanding and care. At Ryan House, families can entrust their child to the certified care team while they take a short break from both the emotional and the non-stop care their children require at home.

The

We, the LEON family have been asked to write a story about William from diagnosis to current to feature at the Ryan House Community Breakfast, as well to be featured on the Ryan House website. We were so excited to write a story about our precious little guy, and I though I'd share it on my blog.

In March 2009 William's mom and dad learned that they were pregnant with their 2nd baby that they had been hoping for and dreaming about. In the very early stages of pregnancy, an ultrasound performed at 12 weeks of pregnancy, some very frightening abnormalities were discovered in our baby. An infalaseal, severe micronathia, and an abnormal measurement of nucal translucency fluid. William's parents were advised to have amniocentesis testing for chromosomal abnormalities, and the abnormalities found on ultrasound imaging led my medical team at that point to think our baby had the appearance of a Trisomy 13 (Patau syndrome), Trisomy 18 (Edwards Syndrome) or Trisomy 21 (Down Syndrome) baby and the future outlook for my unborn baby apeared to be not good at all. After the amniocentesis results came back NORMAL and overruled any chromosomal abnormalities and the results came back XY meaning a BOY!!! William's parents were greatly relieved and excited. BUT there were still the abnormalities discovered on the ultrasound imaging that were discouraging. Although the infalaseal and unusual measurement of nucal translucency fluid were ruled out, there still was a suspicion of abnormalities. This put William's mom and dad around the 18 week point in their pregnancy. The medical team advised William's parents that they wanted to treat the pregnancy as a high risk pregnancy, monitoring the baby with ultrasounds twice weekly until they felt everything was stable, or for the entire pregnancy if needed. The next thing discovered on ultrasound was that William was measuring much smaller than the typical baby during the course of his development in utero and was labeled with Extreme Intrauterine Growth Restriction (IUGR). Week by week, month by month, William was still much smaller than average. This left the Perinatologist's (High Risk Obstetrician) very worried of an early devastating delivery, or even a miscarriage.  By week 36, nearing the 40 week mark of pregnancy, baby William was breach and measuring at 2 pounds 7 ounces in utero. This also concerned the Perinatologist's and they advised to make a plan of delivery at 37 weeks of pregnancy via C-Section. Baby William was considered stable in utero, but was not growing. The hope for William's parents and the medical team was to deliver him and see if he would do better outside of the uterus rather than keeping him in utero for a few more weeks to get closer to the true full term 40 week point.

On November 3, 2009, dad Richard, mom Crystal and big sister Isabell welcomed their new baby boy, William George Leon into the world weighing in at 2 pounds 14 ounces and 14 inches long. He was immediately transported to the Phoenix Children's Hospital Newborn Intensive Care Unit with a special oxygen mask to help support his breathing. Little baby William was born with an unknown genitic syndrome, with multiple congenital anomalies (birth defects) and was diagnosed with a long list of medical conditions. These conditions include: Giant cysterna Magna on brain, Coloboma on left iris, cleft pallet (and fed 100% through his Gastronomy Button, previously had a nasalgastric tube for feeding), mild pulmonary hypertension with an Atrial Septel Defect (ASD), multiple Ventricular Septal Defects which closed up on their own by week 3 after birth, and Fused Horseshoe Kidneys. When William was born, he was not fed any breast milk until he was 2 days old, and received all of his nutrition through an IV. William;s tiny veins could not support the IV nutrition and kept blowing out, requiring the NICU staff to re-poke for a new line multiple times in the first 3 days of his life. On day 4 in the PCH NICU, William went in for his first surgical procedure. He had a Broviac central IV line- a catheter inserted deeper into a main vein of the body so he could receive his IV nutrition properly. By week 2 in the PCH NICU, William was receiving all of his nutrician through his NG Tube (being fed donor breast milk), and the broviac was removed. After this William did nothing but gain weight and make progress towards a NICU discharge. William's mom and dad received the best Christmas present ever in 2009- William was discharged from the NICU on Christmas Eve. He was the most precious Christmas present, and loved going home to finally meet his big sister and be with his mommy and daddy all the time. Having a baby in the NICU was extremely challenging for the Leon Family, but William's mom, Crystal spent every single day at the hospital with William and he also had many visitors from family and friends.

William is now 18 months old, weighs 18 pounds and has quite the story to tell. He had 15 hospitalizations and 8 surgical procedures at Phoenix Children's Hospital in 2010. He has 14 core physicians following his medical case including our pediatrician, a pediatric surgeon, a plastic surgeon, cardiologist, pulmonologist, neurosurgeon, pediatric urology specialist, nephrologist, geneticist, developmental specialist, opthomologist, ear nose and throat specialist, gastrointestinal specialist and the Palliative Care Team at PCH follows William when he is admitted to Phoenix Children's Hospital. He is the sweetest little boy, and has a tiny little smile and laugh that would light up anyones world. He has an amazing big sister named Isabell, who also has special needs and medical issues including a heart defect, she is hearing impaired and slightly visually impaired as well as overall developmental delays. Isabell loves her little brother so very much. The Leon family feels very lucky to have two amazing children, who are so happy despite all their medical conditions. In the life of planning, and organizing clinic outings, surgeries and life itself- The Leon Family make the best of every day with William, Isabell and all the special tools they need for life. The Leon Family also feel so very fortunate to be able to take William to their beloved Ryan House for much needed Respite Care, and feel so lucky that they live in Arizona where this amazing facility is available to the community.

Ryan House Helps Parents of Disabled Children

We stayed at the Ryan House last week and FOX 10 came in a did an amazing little story on Ryan House. This video does a great job showing how great Ryan House is. It shows how much families with kiddos that have life limiting conditions need a place like this in our community.

Ryan House Helps Parents of Disabled Children

There is a fun upcoming event- called The Ryan Houe Run in March. It is a family fun walk/ or a run. I don't know many details off hand, but i will post more information asap. This is a grat way to raise money for our much needed Ryan House which it takes $1.6 million to operate Ryan House yearly and Ryan House relys on donations to keep its doors open to families like mine.

If I could ask a favor to everyone- if you are looking to donate to something much needed in our Arizona Community, think of Ryan House. For ME, for My Family, For WILLIAM. If anyone of my freinds or family would like to know what they can do to help in my time of need- donate to the Ryan House so our family and families alike can catch a much needed break while our special needs kiddo is at one of the most amazing places ever. Check out Ryan House website http://www.ryanhouse.org/ YOU WILL be amazed when you fully understand what Ryan House is!

XoXo

Rub a Dub Dub- Mom quit taking pics of me in the TUB!

It has been a few weeks since I have blogged! I am so happy to say that we have been busy- AT HOME! No hospital stays, and very few clinic visits. Our last hospitalization was December 5-10 2010! After our year of HELL in 2010, I hope 2011 continues on as wonderful as these first 2 months have been. 2011 has been great- I am afraid to say it because I am afraid I will curse our run of good luck, but there you have it I said it. This year has been GREAT. My baby boy has been feeling happy, getting strong and healthy and keeping his butt out of the hospital! He is 15 months old now weighing 15 pounds and is 25 inches long.

You are MY SunShine!

Isabell has also had a great last few weeks. She is loving school. She has the sweetest and most friendly personality, and is such a JOY to call MINE! My neighbor told me the other day that she loves that we are her neighbors because when we are playing outside on Isabell's swinset or just playing in the backyard she loves to hear Isabell's bursts of laughter and friendly and happy personality loudly boasting from our backyard. Her name is Weng-Ling and she grows lots of things in her backyard and she said her plants love to hear us playing outside, that it makes them happy. It was so cute, Weng-Ling is so nice.

Mom's Big Boy

William has really started to become such a big boy lately. He loves to sit up where he can see everything. His head control is getting so much stronger, and I can tell he can see so much more. He just absorbs everything and is one happy go lucky boy.

Love My Girl

I took Isabell tothe ENT Dr. Chapel 2 weeks ago, for her ear tube surgery follow up. Isabell's speech pathologist and Audiologist are still concerned with Isabell's hearing, as well as some other concerns. Her speech pathologist strongly feels like she has what is called a Sub Mucus Cleft Pallet which can affect her speech dramitically making it hard for others to understand her (Which is what we are strongly experiencing currently). Dr. Chapel seemed confident to say he did not see the Sub Mucus Cleft- but our speech pathologist thinks there is something abnormal going on and suggested getting a 2nd opinion by another specialist that she knows (Not and ENT from my understanding). I am very open to seeking the 2nd opinion. AND we are also still in the midst of trying to plan and schedule surgery for her Vascular Ring Repair.

Lookin' Good

Willie boy got a haircut, his 3rd haircut since birth! He has a wild hair doo, look at all the hair I cut off in the background! He is SO HANDSOME! I kiss his cheeks 1,000 times a day! I am so glad he has been feeling so good lately. William RULES! :)

Loungin' in the Grass

The weather has been so mice, taht we spend most of our days outside in the backyard! When I set William up on his comfortable blankets, big sister Isabell wants her spot made up too! William loves it outside, and usually alls asleep!

One Loaded Stroller!

I have been friends with my friend Jena since we were 12, and we try and hang out as much as possible. Her son, Harper is 1 1/2 and the otehr day I went over and picked Jena and Harper up and we had a big day of fun. We had some running around to do and William and Harper were so good the whole day. Isabell was at school- but at lunchtime we picked her up from the Goddard school and we grabbed lunch at Jack in the Box and then drove her to pre-school. It was a good day, with good company.

Princess Isabell

We had to make a royal queen/princess crown for Isabell's pre-school class and this is what we made! She wore it to school so proud, and everyone kept telling her that her Princess rown was beautiful. She was smiling ear to ear and we really had fun making it together.

Happy Valentine's Day!

Isabell's class at Goddard had a Valentine's party, and Isabell was the happiest kid there! They handed out thier Valentine cards etc and ate Pizza! She had such a gun Valentine's day.

HaNdSoMe!

Silly Kids

Richie came home for a short visit this last weekend, and it was so nice to see him. We were really missing him. We are so proud and thankful for all he does for us. We are so lucky- we miss eachother so badly while he is working over in California, and we do wish we could be together more often. We are so lucky that he has the job he has and he stays very busy with the job he does working 6 days a week to make deadlines-but we wish he was working closer to home. Having him home for a weekend here and there gets old. I wish my kiddos could see their dad everyday. It gets boring without daddy around! BUT despite all my hopes and wishes- we are all doing great, keeping healthy. We do have so much to be thankful for, and to be happy about. 

Please keep us in your thoughts and wish and hope that we continue to have Great Days ahead of us. Hope and wish that we get through Isabell's medical issues smoothly, as well as William's upcoming procedures this year. Hope and Wish taht most of 2011 will be spend at HOME!

Update Time!

It has been almost 2 weeks since I have checked in last! I am happy to say all has been pretty well here for us. A few things to rant about, but nothing too major. We had a few appointments for William and Isabell with genetics, pulmonology, cardiology and Isabell even had a CT scan at PCH under anesthesia. Here is the run down...

• 1/10- Met with pulmonology for William. Long story. William is a Physician Only patient due to his advanced healthcare needs. When he was discharged from the NICU we were introduced to a pulmonologist who moved and then we were assigned to one of the Practitioners in the group. After William advanced needs were not being met by the practitioner, my pediatrician Dr. Berger and I decided that we see a physician only. SO- a few weeks ago, one of the pulm clinic nurses called me following up on William's case. She recommended we come in for a visit. We see Dr. Drewek, and we LOVE her. It was recommended that we go to clinic the 2nd week of January. The thing was- Dr. Drewek was booked solid and the pulm clinic nurse recommended coming in to touch base with the practitioner. I was very hesitant to this, but also thought  William was doing well so it would be ok to touch base with practitioner so they can give update to Dr. Drewek. So the nurse scheduled us for 1/10 at 2pm. OK so I arrived at 2:06pm, checked in and the receptionist had a strange look on her face and said questioned me- asked me if I was sure we had an appointment! I was CERTAIN we scheduled for this time. So she called back to the pulm clinic nurse- and long story short, the nurse that called ME to schedule the appointment did not put the appointment in the schedule. So they told me no worries, they will see us. at 2:35 we were still sitting in the waiting room filled with LOTS of people, coughing and sick people. So I asked for a room to wait in. Then the practitioner came in at 2:55. At this point I would have rather re-scheduled instead of waiting- I planned on leaving no later than 3:10 so I could make it home to get my daughter off the bus in time. So the practitioner examined William, and talked with me for less than 6 minutes, and said she'd return in a minute. by 3:15- nobody was around and I didn't have any more time to waste so off William and I went! I had to walk out, quite P.O.'d! I work so hard to keep William well and ome and schedule as little clinic follow ups as possible during cold and flu season to keep him well and our pulmonology clinic- his LUNG specialist put us through this!? It is not easy to take William on an outing. I don't just throw him in the car seat and off we go. Our outings includee preparing a feeding pump in a to-go fanny pack bag, hook up oxygen tanks properly and any necessary monitors. Lots of equipment for outings and I did not appreciate and was not impressed with the outcome of our follow up visit.I put a phone call into the clinic supervisor, who was very sympathetic to the situation and I am glad I spoke with her.We will for sure ALWAYS be physician ONLY! And if Dr. Drewek is booked, she will be asked to look over her schedule with a fine tooth comb to see William- or have him see another great physician if need be. Managing Williams health care team is exhausting!!

• 1/11- scheduled to meet with Dr. Grebe with genetics. She follows both Isabell and William. When we seen her last in Oct 2010 she gave me some lab paperwork to do some more genetic testing for William looking for genetic syndrome called Cornelia de Lange syndrome, as William presents very similar features of this particular syndrome. Isabell presents slight features of this syndrome. If William tests positive, then we will have her tested as well. Also last we seen her in October, she recommended we follow up with cardiology and opthomology for Isabell. We were unable to make it to the office visit on this day because William was slightly wheezy and I did not want to take him out of the hose. Dr. Grebe and I spoke over the phone. Isabell seen cardiologist Dr. Ellsworth in November where he was concerned with her echo cardio gram as it appeared Isabell may have a heart abnormality called a Vascular Ring. And I was unable to get to the lab with William to have his genetics labs drawn yet. So Dr Grebe and I just discussed these things and will touch base after the labs are drawn.
• 1/14- Isabell had a CT scan at PCH ordered by Cardiologist Dr. Ellsworth. Looking for heart abnormality called a vascular ring. We did not have to check in until 11am for the procedure, and her eating and drinking restrictions were not as challenging as i thought. She had to stop eating solids at 4am and could have clear liquids until 10am. Well she didnt wake up until around 7am and coud not eat breakfast. She did ask to eat things all morning- but handles it GREAT when I told her that she had to wait until after we go to the Hand. (she calls PCH "The Hand") When we arrived to  The Hand, she was such a good and brave girl. She even got a Fancy Barbie! I went into the CT scan room while my favorite anaesthesiologist, Dr. Lenox put Isabell to sleep with a mask apparatus. I was able to help TRY and comfort her and hold her arms down because as soon as Dr. Lenox
• 1/15- We went on a family outing! Richie's cousin, Lizz's son Alessio turned 4 and they had a nice little birthday bash at the great park near their house. William just hung in his stroller, and Isabell played with all the kiddos- ate pizza and cake. Also, Isabell started not feeling well again- runny nose and droopy eyes, low energy. And sure enough it seemed to be another cold by nightfall.
• 1/17- We had a nice day, Isabell was still feeling icky. We went on a little outing, and then just stayed home. Richie had to leave back to CA around 5pm. It was so nice having hine home, we always hate to see him leave. Isabell and I stand out in the street and wave to him until he is outta sight. Yelling BYE DADDY! And he waves back at us all the way down the street. He is the best dad.
• 1/19- Isabell had a snow day at school and I was able to go to her school and watch her and her classmates and teachers play in the snow. Each month at the pre-school they have a theme. This months theme has been the Artic Winter. Colors black/white. Concept hot/cold. Letters J,M. All month building up to and learning about the snow day. It was fun to play in the snow in the hot sun here in Tempe!
• 1/20- I had a phone conversation with cardiologist Dr. Ellsworth today. He called me to discuss the CT results for Isabell. The CT did confirm a vascular ring. the ring is encircling her trachea and esophagus. The ring is snug against the airway and esophagus and could be the accomplice to her choking. Isabell is a choker. He also explained that this ring doesn't allow her much room to grow. So together we do feel like surgery is appropriate for Isabell. Good note- this will NOT be open heart surgery. There will be incisions made, but not open chest surgery. I am SO HAPPY its not open heart surgery. So anyhow, Dr. Ellsworth is sending our file over to cardiac surgeon, Dr. Pearl and we will be having a consult with him here in a week or 2 I hope! I am making my list of questions for Dr. Pearl now- my poor B-Bell!

SO, after summarizing all of this, I am out of breath! But the good thing is, we have gotten in some much needed quality HOME time. I am happy to say we are all doing well, and we are holding up well! We still have quite a few tasks on our To Do list, and will be busy. Up coming events and appointments are- William's bloodwork, follow up with ENT for Izzy, consult with cardiac surgeon for Izzy, consult with urologist/ped surgeon Dr. McGill for William, PT on Tuesday mornings, OT on Wednesday afternoons, Izzy at daycare Mon-Wed-Fri mornings and preschool Mon-Thurs afternoons, Williams synagis vaccine, AND TO STAY HAPPY AND WELL! I will update again as soon as I can!

Had a GREAT frist week of 2011!

Glad to report an easy goin week here at the Leon house! On Saturday, January 1st, William woke up for the first time since December 20th without wheezing, and without congestion. Richie and I knew it was going to be a great day, William was feeling more like himself. On New Years Day, our cousin Anthony arrived around 3pm, and him, Richie, my brother Lavell and his buddy left for the Fiesta Bowl. Then my mom called me and asked me if the Rummel's could come pick up Isabell and take her to her house for a fun night. Isabell was so excited to see Savannah- Rick and Shannon's oldest daughter who Isabell adores and is obsessed with, it's so cute. So bubba and I had a nice and quiet night- he went to sleep early and i just watched TV and did a whole bunch of nothing!

On Sunday, Richie had to go back to California- and we were sad to have him go. It is so nice when daddy is home.

Over the week, Isabell started back to her school routiene of attending The Goddard School pre-school/daycare 3 mornings per week, and going to her head start pre-school 4 afternoons per week- where she gets to ride the bus! She had a busy and fun week at both school's. And she spent the night with her Nana and Papa and cousins Lydia and Lily on Saturday and got home on Sunday. She had a really fun time. We are ready for next week. I had to take William to the Los Ninos Synagis Clinic on Monday for his Synagis injection- it's a vaccanation against RSV for fragile babies/infants. And we had a clinic visit with oir GI specialist, Dr. Ursea at PCH on Wednesday. She was pleased with his growth, and stability. This upcoming week we see our pulmonologists NP in clinic and our Genetics Specialist Dr. Grebe on Wednesday. William also recieves his therapies, PT and OT weekly here at home. I need to get my DDD support cordinator on the ball and find us a feeding/speech therapist to do weekly therapies. We are not doing any oral feeds right now, but feeding therapy will be much needed in our future. When our OT came the week before Christmas, she had lost her voice slightly and sounded kindof funny and incase she was getting sick I asked her to wear a mask and to wask her hands real good and she did. I didn't think she sounded terrible- but I cannot be too careful and I don't want anyone sick to come into contact with William or the house!

On this past Saturday my mom brought over Granny Thelma to meet William, Themla is my mom's husband, Tom's mom. Her nad Papa Tom live in Yuma and have not seen William. Papa Tom had a cough and did not come, but my mom brought Thelma over and it was so nice to see her, she is the sweetest ever.

I am ready for the new week!



Photos of our week!

HAPPY BOY!

 Loungin!

Big Sister, Little Brother!