Ready to ring in the new year!

It's been several days since I have posted some updates. We have been busy, and we had a very nice Christmas. The greatest Christmas gist this year was to have William home since he has been spending WAY too much time at PCH lately. Since December 18- William has been sick. Here is a rundown since I last checked in and blogged on 12/18...

• 12/18 Saturday---Took William to PCH ED for fever of 104.5, increased O2 needs, and vomiting. Labs were drawn- they were abnormal but not too terribly too abnormal for William. His Urine was clear, RSV swab was clear, his fever subsided but his chest X-Ray showed evidence of a pneumonia. The ED physicians and I discussed the situation. Other than starting William on some sntiobiotics- They did not have a recommended treatment plan. They told me they did not mind at all admitting him for observation, but they also would not mind discharging him so we could go home, start the antibiotics and see what happens!
• 12/20 Monday--- William woke up wheezing terribly. I called his pediatrician, Dr. Berger at 8am and he advised to start a 5 day prednisone steroid burst. I started it at 9am and Dr. Berger said if William's breathing did not improve by 3pm to take him to the ED. William's breathing improved within a few hours- thankfully! So I just decided that he was going to just stay calm and quiet and try to stay relaxed so he didn't have difficulty breathing or have a wheezing attack. He was not feeling great- poor little buddy.
• 12/21 Tuesday--- My sister in law brought my nieces Lydia and Lily over to play with Isabell. The girls had so much fun on Isabells swing in slide playhouse in our backyard. William also was feeling ok, not great- I was still keeping him quiet and comfy. Lydia stayed the night and we had fun playing and making a killer batch of fudge. Richie surprised us that night and got home from California- we were not expecting him until Friday Christmas Eve! Lydia, Isabell and I all went to bed in my big bed and when Richie got home around 11pm, he seen us all cozy and comfy in our room, so he slept in Isabell's room!
• 12/22 Wednesday--- William woke up extremely wheezy and fussy and irritable at around 3:30am. Finally around 4am I decided to give his dose of steroids- and I all along have been giving him his albuterol treatments. He calmed down by 6am, ans we were able to get back to sleep. We all slept in- Richie and I were so tired this day. William did ok all day. the girls and I went out and did some fast and easy Christmas shopping at Fry's gift card center, and went to Target. Later, My sister in law came and picked up Lydia. I went back to Fry's and bought stuff to do some baking, and made some famous candy we call Christmas Crack- It's so yummy and delicious its more addicting than crack!
• 12/23 Thursday--- I woke up at 3:30am with the mind set to give William his dose of steroids before he woke up and got all wound up and throw himself into a wheezing attack. This plan worked out GREAT! WWilliam ended up having as decent day, as we all did.
• 12/24 Friday Christmas Eve--- William woke up early fussy and wheezy. I got up with him and just held him and patted him until he calmed down and went to sleep. Another morning of sleeping! We were again, so tired all day. I called William's pulmonologist now that today was the last day of his 5 day steroid burst and I did not think he was getting any better yet and asked her if she had any recommendations of things I could do here at home. So she said to continue the steroid burst for a full 7 days, and then we will slowly taper him off of them and see how he does. A huge bummer about prednisone lung steroids is that it helps you breath, but it also weakens your immune system. So now I have to be extra extra careful and good at keeping everything cleaned and sanitized, lots and lots and lots of hand washing and my hands are so dry and ouchie!, limiting visitors, and all that fun stuff to try to get him well and keep him well. I have even put several clinic follow ups on hold with our other specialists to keep William home and safe from illness. But anyway- we had a good day and around 4pm Richie went to his Parents annual Christmas Eve family holiday party to go pick up his grandma and bring her to his Aunts house here in Tempe. I dressed Isabell up in her Christmas dress and sent her over to be with the family. then when Richie returned home around 7pm- I went over to the holiday party to see anyone who was still there and get my B-Bell. (Isabell, that's what she calls herself!!) It was a nice day.
• 12/25 Saturday Merry Christmas!--- Had a great day, William was feeling ok- not very energetic and slept quite a bit. Isabell had fun opening gifts, and so did I! Her favorite toy was her light bright from her Great Uncle G! We are so lucky- we were able to make this Christmas extra special and great. We got so many nice gifts as well- we just LOVE our family, they are the best. Richies parents came for Christmas Tamale and Eggs breakfast and we had a nice time. Then Richie started getting our Christmas Ham ready to bake around 10am. My mom, and her husband Tom came for dinner. My brother was here too, and we had a very nice time. Small, low-key but thats the way we had to do it this year and it was the Best Christmas Ever! 
• 12/26 Sunday--- William was still wheezing, the worst in the AM's of each day. He woke up fussy and irritable and Richie got up early at 5AM with him and I slept in until 10AM!!! 5 hours of sleep=AMAZING.  We just stayed home all day- well that's what we always do! Haha, in the AM I asked Richie what he wanted to do today, and he replied.... Well do you wanna stay home or do you wanna stay home?? Haha- that's our only option! But later that evening he did have to fly back to CA- my brother was here so he sat with William while B-Bell and I took daddy to the AirPlane. It was such a bummer for him to go, our Holiday went by way to fast.
• 12/27 Monday--- William was ok, still wheezy. We had a good day, and we had a visit from my Aunt Marsha in the AM and we had a nice visit.,
• 12/28 Tuesday--- William was ok, still wheezy, but I do feel like he is getting slightly better each day. I sent Isabell to the day care center she goes to, and it is closed for the week, oopsie! William had PT with a new therapist today, and he did great. I only let her do some light ROM and other tactics since William is sick right now. He tolerated it very well, including 2 minutes of modified tummy time!
• 12/29 Wednesday today--- William was pretty good today, maybe even getting back to his happy self- a little more energetic and playful. But still wheezy. Tomorrow is the planned day to stop the steroid burst taper, but again I am nervous to stop the steroid. His wheeze is still pretty bad. And I feel like the steroid id helping. So I put in a call to the pulmonologist again today. Our new plan is to continue all I am doing at home, and to continue slowlyy tapering William off the steroid. So that is where we are today. Tomorrow was supposed to be the last day of the burst, but now Monday is our next projected day to stop the steroids. Gosh, and I sure hope he gets rid of that terrible wheeze by then. Somethings gotta give, really! Isabell had good day, and was trapped inside all day due to the rain. I have been busy constantly cleaning, sanitizing, and keeping this place germ free and trying to sneak in some play time with the kids and resting time here and there as well.

Richie should be home on Friday and we are excited to see him- although he is going to the Fiesta Bowl on New years Day with our cousin Anthony and my brother Lavell! But that will be alot of fun for him. I am hoping William will get to feeling a little better ASAP so I can book him another campout at the Ryan House. I am wanting to go back to California.

I am ready for the new year, and I have made a New Years resolution. I feel like I do great at the job at hand I have. But My New Years Resolution is to become even more organized with William's medical ventures- and most of all I have put his health and check ups as priority and I have put Isabell's health and check ups on the back burner. In 2011 I am going to strive to keep up On Isabell's health, check ups, and strive to become more involved with her preschool class. Isabell is such an amazing little girl, and when I say I put her on the back burner this lat year, she has taken it very well. Always just going with the flow, and never complains. She is always smiling her beautiful smile from ear to ear, accompanied by the cutest and sweetest giggle. I am so lucky to have my little B-Bell. She is silly, but a great big sister- she loves William so much. Despite all William's issues, he is one lucky little boy. He has the best Daddy, sister and mommy and we all have So Much To Be Happy About and Thankful For!!! If I don't check back in before New Years eve, Happy New Year Everyone!!!

Merry Christmas 2010!

Leon Family Christmas Letter 2010

We wish you a Merry Christmas

We wish you a Merry Christmas

We wish you a Merry Christmas and a Happy New Year

Good tidings we bring to you and your kin

Good tidings for Christmas and a Happy New Year

Oh, bring us a figgy pudding

Oh, bring us a figgy pudding

Oh, bring us a figgy pudding and a cup of good cheer

We won't go until we get some

We won't go until we get some

We won't go until we get some, so bring some out here

We wish you a Merry Christmas;
We wish you a Merry Christmas;
We wish you a Merry Christmas and a Happy New Year!!!

This year has been very eventful for the Leon Family! As we rang in the new year in 2010, William had only been home from Phoenix Children's Hospital Newborn Intensive Care Unit since Christmas eve 2009. We were still getting used to our new family routine. William was a special added member to our family, and his special needs required some important equipment and monitors. Richie, Isabell and I welcomed our little William and all of his gadgets and we took to him like he had always been a part of us. We loved him so much, and he loved his home. We had our new routine down pat within no time. During the months of January through April, William had about 2 to 3 clinic follow up appointments per week as we were having our medical team monitor and watch his growth and well being very frequently. During this time Isabell was attending her preschool program at WVES. She loves school. While she was attending WVES I was able  to drive her to school each day and drop her off and pick her up. After the month of April came to an end, my medical team and I had made some surgical plans for William on May 20th 2010. It was a routine surgery that turned into a 14 day hospitalization in the Phoenix Children's Hospital Pediatric Intensive Care Unit involving 5 surgical procedures. Unfortunately, William had 1 hospitalization after another with a total of 16 hospital stays since May 2010 and a total of 11 surgical procedures in 2010- making this year a very difficult year to endure. But wit the emotional support, and an amazing group of family and friends- we fought through all of our battles and with the fact of our little William's health still being in a very fragile state, he is making great progress and getting bigger and stronger each day. Also to add more excitement to our busy summer, Richie took a job with Mass Electric in Los Angeles, CA. Our house was for sale in West Phoenix, and sold with a closing date of June 4th. And our new house in Tempe was being remodeled and the remodeling was still in progress when I had to be out of my old house- during my sons hospitalization in Intensive care. I don't know how we got our old house packed up and sold, and moved into our new place and managed all of the craziness- but here we are 6 month later and all settled into our lovely new home. We sure do miss having Richie gone so much, but he is home almost every weekend. And makes trips home when our little William boy is in the hospital. Isabell is in a new preschool this year here in Tempe and is doing great in her preschool program. She gets to ride the bus to school and that is the highlight of her life. Its all about the BUS! Her favorite color is Pink, and she is the happiest funniest little girl in the whole world and can make any ones day a little brighter. I don't know what it is about my little Isabell, but she is the most special, sweetest, cutest little dollface ever. I am a little partial, but I am serious- between her and her little brother I have the sweetest most precious children who are completely amazing and make this life we live true meaning. We truly are one lucky family- despite all these major setbacks!

One thing Richie and I really missed out on this year was spending time with family and friends due to our fragile situation with our little baby boy. We missed out on fun camping trips, vacations and all those spur of the moment things we used to be able to do. Our lives have changed so much this past year, and it has made us so much stronger as parents and as people. We know we will have our day again- we know William will jump through all these hellacious hoops and continue to amaze us all and overcome all of his downfalls and hopefully we will have some kind of a normal life in the upcoming future. We are more than ready!

I cannot put into words how much we love and appreciate all of our close family- without them we wouldn't be where we are today. Our parents are the best ever, and will do anything for us. My mom has taken on such a huge job this past year, pretty much being my back up body. When I fall behind, or need a little help- she is there  before I even need to ask picking up the slack like its nothing. She just does whatever it takes to help us out, and does it with no complaints and always has the best advise and guidance for us. She makes sure we are all taken care of- one amazing lady. To have the loving family we have been blessed with is the best thing ever, and makes us the strong knit family that we are. Thank you all for being the best ever. Another special thanks to my Aunt Tommie and Aunt Josie who have been a HUGE help this year. Thank you for all you ladies do, your both are amazing. And also to the Rummel Family. What a caring, and thoughtful family they are- and have been there for us for several years. We are so glad to have you in our "family" thanks for being the BEST! And many thank yous to all who have said prayers, sent well wishes, and words of encouragement to us through the year. We appreciate it so much! All of our friends and family's encouragement and kind words have made us able to keep on keeping on. Thanks So Much!!!

We are so excited to spend Christmas 2010 her ein our new cozy home. MERRY CHRISTAS AND A VERY HAPPY NEW YEAR TO ALL!!!

LOVE,

Richie, Crystal, Isabell and Willie





Life is testing the patience of the most impatient person!

When I was younger my mom always told me that when I was being created that I did not wait in the line that was handing out patience long enough because I am so impatient! This is so true,  I am the most impatient person and I tend to throw fits when things don't go my way. Becoming a parent to Isabell tought a few things about patuence, but I was still very impatient!

When William was born- somehow someway I became so patient and calm. I had to. To understand and deal with the stress, worry and dissapointment life brought me- I had to be calm and patient. I had to keep myself together so I could learn all about my fragile little 2 pound 14 oz newborn baby boy with multiple congenital anomolies. I had to be positive. In order to stay positive, I tried to just take in all the good things I was surrounded by- my Husband, daughter, and precious little boy who was the sweetest and cutest little 2 pound 14 ouncer ever. My family. My friends. The wonderful and life saving medical team I chose for my son. All these things were and are something to be thankful for, and happy about. So at once, there was no other option but to ride through this mess on a happy, positive, and patient note.

Now one year later. William's health has led us down a path that we had totally unexpected. I guess you can say that about William- we do not know what to expect with him. BUT this time last year we did not for see 15 hospitalizations and 7 surgeries to occur. Most of the hospitalizations have been related to respiratory distress and after 1 year of so much respiratory distress William's diaphragm is weakened and he now is on an even higher flow of oxygen as of November 2010. His lung damage can relate to COPD. The fortunate thing in William's case, is damaged mungs rebuild tissue in the first 7 years of life. So although the damage is done, he has a chance to overcome his respiratory weakness. So when people see me and see my positive and happy image- this is why. Its because I have to be- there is no other way to be other than miserable and I do not want to be miserable. Again, we have so much to be happy about and thankful for. Each and every hospitalization does take a toll on us as a family, but for William we will do anything. Richie and I have said a million times- if we could take on all his health issues we would in a heartbeat so he didn't have to have another surgery or hospitalization. But on the upside, we have the tougest little boy I have ever met, and he is such a fighter!

Today, we checked back into Phoenix Children's Hospital as William spiked a fever of 104.5 and was congested requiring more oxygen. His body is too weak to overcome illness at home. Especially if he has an underlying issue causing the symptoms. This is when the hospital becomes our best friend- to draw labs, and determine if he has an infection and to check his overall blood enzymes. This will tell us what to treat, and if he needs any special fluids or antibiotics intravenously.

So we were home for 1 week with the little buddy. It has been a very overwhelming week because Isabell is sick with a terrible cold. Keeping William isolated from her is impossible. I had to keep her home from school all week, and her attention span was as long as a toothpick. And she had a fever, has a terrible cough and runny nose. With her lack of attention, she would just roam all around the house whining and coughing and wiping her nose and wiping her germs all over the house. I kept William on lock down- up elevated in his crib at all times trying to keep her away from him. BUT everytine I would turn around she was near his darn crib trying to see what bubba was up to. It was hard because she was not in trouble, but I had to keep getting on to her about staying away from bubba. And this was hard for her to understand. Usually she is allowed to play with bubba all day and all of a sudden she was feeling icky and mommy kept yelling to stay away from brother. So on Wednesday Isabell was getting worse and I had gotten so overwhelmed and my patience was non existent. I had to call for help from my re-enforcements. My hubby flew in from CA and my mom came rushing over. And on Thursday Richie flew back to CA but my brother's job got snowed out up north and he has been home which has been nice.

This morning we were having a good morning, and William was feeling good and playful until 9AM when a fever of 104 and vomiting hit him like a Mack Truck. He had a real hard time settling down needing more oxygen and that is what led us to PCH.

All his labs are looking ok right now, and his cultures are still pending. Still waiting on urine. At this point, we are looking like we are homeward bound, in hopes for him to feel better.

I will have more updates at a later date!

Crystal





“Patience is the ability to idle your motor when you feel like stripping your gears.” Barbara Johnson

Home is where the heart is, WHY are we back at PCH?

The kiddos and I have had a great week at home. William discharged from his 15 day hospitalization on Monday 11/29/10. Although his RSV swabs and labs were negative for RSV, we were convinced that our little buddy had a cold. When we dc'd, we were sent home on a higher flow of oxygen then he had previously been on- now on 0.4 LPM. Since Tuesday, I have had to increase William's flow to 0.5-0.8LPM. He hasn't been congested, or wheezy and I have been giving his albuterol as needed. I spoke with his pulmonologist yesterday and she suggested to give William 2 puffs of his inhaler every 4 hours for 24 hours- bringing us to Saturday, today. And if that worked, to continue for another 24 hours- bringing us to Sunday and then stop the inhaler regimen and see where his O2 requirements are at. So I started the albuterol regimen at 3PM yesterday, and it helped keep his oxygen saturation's above 95% at 0.4 LPM. Woo Hoo.

Later yesterday evening, my mother in law, Phyllis brought some delicious take out from one of my favorite local mom and pop bar and restaurant, Macs Broiler and Tap. They make homemade soups everyday and Phyllis picked up a few bowls of Chicken Noodle soup and sourdough bread. Isabell, Nana and I enjoyed our soup and Isabell went home with Nana for a sleepover at her house.

William and I were enjoying the peace and quiet so much, that after I gave him his 9pm round of meds, we went to sleep! Then i woke up at 2am, to William grunting in his bed. So I got up and checked on him to discover that he was burning up. I took his temperature and he was 103 degrees. His other vitals were normal, so I undressed him, put a cool cloth on his forehead and gave his some tylenol. His temp decreased and we went back to sleep by 4:30am. We then woke up around 8am. He was still a little warm, but his temp was reading 99.6. I thought he was calming down, so I put him in his swing this morning and was going to plan on having a nice day at home. After an hour or so, I looked at William and his face was bright red and he felt so warm again. His temp was 103.7. So now he has two things not looking so good- needing more O2 and a high temp. I was so bummed, but I knew he needed to be seen by a doctor. He is so medically fragile, that I cannot take a risk or chance of trying to let William recover at home. He has such little reserve, and with his upper respiratory issues it is always best to have blood labs done, and chest x-rays to try and avoid and/or treat any pre-pneumonia's or pneumonia's. Or any respiratory illness, for that matter.

We arrived here to the PCH ED around 12 noon. We have had blood drawn (IV in the center of his forehead), and x-ray already. X-Ray showed left lung looks like a little pre-pneumonia- and the signs area ll there. Moving less air in his lungs, increased heart rate, compromised breathing- and just got done trying to fight off an upper respiratory illness from last week! The Ed doc just started some IV antibiotics in his IV. Poor little man has has one hell of a year. His blood labs are not back quite yet, but should be any minute now. We are getting admitted, but I am not sure where we are going yet. I hope William is stable enough to stay out of the PICU this visit!

I feel like we will struggle through this winter, upcoming spring and fall- possibly even next winter with William. I feel like he will fight through any severe respiratory illness, but he is so very fragile and has such low reserve. He needs a good 6-12 months to build a stronger reserve, and make his hospital visits further apart! The bad thing, is when he is here in the hospital fighting off illness, he is not building any reserve. He builds strong reserve when at home for extended periods of time, and William hasn't had an extended time at home since before May- spending most of the summer in-patient at PCH for surgeries, battling illness and more surgeries.  He will get big and strong if he could just make it through the next 6-12 months of battling respiratory illnesses.

Ok, more updates later- I am going to hunt down the doc and discuss William's lab results and plan of care at this point.