Cold. Refreshing. Lemonade!!!

What a fun way to spend a perfect Spring Day- Drinking Lemonade and donating to a great cause!

Join in on the fun with Team William Saturday April 21st, 2012 from 10-am-2pm!

I am hoping to have multiple stands around town, so let me know if you are interested in hosting a stand!

Think Lemonade!

Cold. Refreshing. Lemonade.

Happy Monday!

Hey Leon Family fans... wanted to write a quick update. I'm pretty tired, but thought I'd share a few things! We survived our busy week last week- it was exhausting. I'll break it down...

• Monday March 19th, when we met with my kiddos PCP to talk regarding William's non-flushing most likely clotted Broviac central line catheter. We also talked about a few pros/cons of port placement. He agreed we needed to get the non-functioning Broviac out- and that it had to be surgically removed to to just consult with surgery. So, luckily I had the appointment set up for early the next morning. THEN as luck would have it, after a great day, William got a fever in the evening of 103. The fever led us right to PCH ED. at bout 8pm I called my mom and told her I needed help with Isabell, and she dropped everything and came right on down to my house to stay with Isabell. I often wonder what I'd do without my MOM! Anyhow, William and I arrived to PCH ED around 9pm. I was so nervous and scared that the fever was due to a infection from the non functioning Broviac catheter. After labs were drawn, we identified that there was no blood infection and we actually discharged to go home- at 2am!! Long night, and our appointment with our surgeon was at 7:45 the next morning. We got home about 2:30-3am, slept until 6am, and left the house at 7am to get to our appointment at 7:45am.
• Tuesday March 20- appointment with surgery. Our surgeon expressed that the current broviac needed removed and that a port placement is an option, nut automatically an increased risk of infection for William because he has a trach and the port will be up near the trach. He didn't jump to make a plan to remove the broviac which needs to be surgically removed- he ordered an ultrasound of William's veins to make a plan for port placement. I was somewhat frustrated, because at that point I just wanted the Broviac removed!
• Thursday March 22- Our clinic visit with our endocrinologist went well, even though William had to get blood drawn and we were unable to use the darn Broviac, so William had to get poked. He did surprisingly well, and actually giggled through his 'poke'.

As of today, we still have no plan of removing Williams non functioning, at risk for infection, and clotting Broviac. I ended up calling our PCP, and surgeon asking, begging, pleading, and reasoning with them to make a PLAN for removal! It's been over 2 weeks since the broviac has been flushed, and is doing nothing at this point but waiting for a clot, infection or worse. By tomorrow I should hear of a plan.... SHOULD is the key word.

This is very frustrating, and I have gotten very frustrated with my medical team whom I very much trust. I have had to be very persistent on this matter, and I feel like I have done so much already to try and make this "Plan of Removal" happen. I had to go into panic, melt sown, hissy fit mode today to get everyone to Listen To Me!!!

Wish me luck for tomorrow, if a plan isn't made, I am going to blow my top!

Spring Break 2012 days 1, 2, & 3!

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

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

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

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

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

Photos of our week so far...

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

How nice March 2012 has been for us!

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

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

I hate February's!!

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

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

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

Ready for February to end.