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!



Thursday, March 8, 2012

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!

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