Parenting the special needs...

At A Glance...

This is a blog dedicated to my kiddos, Isabell and William. These amazing kids were born extra unique and one of a kind. It's currently unclear what Isabell and William's genetic disposition is- but they have faced many developmental and medical challenges. They each face their different challenges, but they are so much alike. We really think Isabell and William have the same un
diagnosed genetic syndrome. With a combined 24 hospitalizations, and 20 surgical procedures between these Warrior Kiddos, their needs are extra ordinary, and they are spectacular little children. I am the luckiest mom alive, and we are #leonfamilyaz

As I have time, I like to escape to this blog and give my readers a sneak peek into the window of our lives. Happy Reading!



Monday, February 27, 2012

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.





























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