It's SO hard to imagine that this was 5 years ago now!
So although I haven't blogged about this in years (usually the annual Ronald McDonald Meal of Love dinner night), I thought this was a significant event to record and remember.
Sarah just posted the following:
"We've been sharing with him our journal from his illness since he's old enough to understand now. He takes long pauses and blinks a lot. He chose to wear a camo jacket today because he "fought a really big illness." He's a survivor but certainly couldn't have done it alone". ♥️
Here is William today (at the Ronald McDonald Home) on the left, with my son (whose older) on the right. So you can see William is strong, healthy and loving life and living it to the fullest each day. And giving his parents a good run for their money with all the energy he has!
So all of you who follow here on this blog know of Williams story. Just in case you don't you can go here...
But we were so happy that Sarah has worked hard (despite our very busy lives) to make sure that we have had the opportunity to give back to the Ronald McDonald House where they stayed when Will was so sick and were treated so well during a difficult time.
Basically what we do is once a year go in and provide a dinner and raffle with prizes for the patients and families that are currently staying at the RMH. We are able to meet families from all different walks of life and all different locations, but all here during a trying time! So to give back feels like a blessing and there is almost always tears.
Will sitting by the prizes...
Above is Nurse Kristy and her son Owen! She was one of Will's FIRST nurses (at his LA hospital stay) also came with her son for support and to help. How darn sweet is that! THANKS Kristy!
We are able to get donations for most of the food and then we also pitched in to bring and/make some. We also bring games and toys for the kids, which makes the raffle a fun part of the night.
Sarah's mom Sue bringing treats to the table.
Nana, William, and Boppie (Danny's mom and Dad)
Sue and William
Claire, Ella, and Danny getting raffle tickets drawn
I about cried watching this sweet little patient have so much fun playing with my Ella and William. The kids just treated her like another kid (which is perfect) but I could tell she was so excited to have other kids to run around and be normal with. It touched my heart and made me count my blessings for sure.
Will insisted he have his picture taken in this car...
Which really made me smile when I found this picture from last years dinners post...
Here's the whole crew from 2013!
Me and my Ella were the only ones from my family able to make it this year...
but I did let all my kids get prizes. I thought it would be good for them to see these items going to a good cause (although it was very difficult for them not to get everything they picked, they each got one thing)....
We are SO beyond pleased to announce that Will is doing SO well! All of his labs came back within normal limits again! Hallelujah!! So that means no need for meds:). 3' 3" tall (90% percentile) & weighs in at 37 lb 9.6 oz (93%) ...and of course is loving life!
Will at the Fire Station
Wearing his Batman cape at the Zoo. He insisted on it and although to some he may appear as a ragamuffin, he warms people's hearts (especially Danny & Sarah's) and they are incredibly grateful he is alive and SO healthy, as are WE ALL. It is more than they would have ever dreamed to ask for!
He is also talking more clearly daily and makes us laugh all the time! He tells me several times a day he wants to play baseball when he gets big or that he wants to go in a race car after he gets big. He has had a backpack packed for several days for his sleepover at Asher's (cousin) house for when he turns 5 (clearly time is not easily conceptualized for him).
We are still working on not screaming when he wants something and he is a DETERMINED boy.
He loves learning and reading and loves to do homework when the big kids do theirs. He is a big helper when he wants to be, but will often says "I'm too busy" when I ask him to clean up his toys!
REMEMBER THIS?! What a sweet boy and how far we have come!
You can go here to see Sarah's original post. But in case you don't follow her personal blog, wanted to be sure to share...
I rarely give up sleep to blog, which is why I am always behind, but tonight I cannot go to bed until I about the important anniversary today is. One year ago was one of the hardest days of my life on earth. My son looked like this:
I wrote in my journal the following: I awoke early again Friday, July 15 and prayed that I would accept whatever God’s will was for our family, that day especially. I walked into William’s small room to find a plethora of doctors and nurses. It appeared that his dialysis fluid had stool in it. They had already done xrays and were waiting for confirmation of a bowel perforation. The surgical team came in to consent for surgery. Dr. Ford was the surgeon on call that day. Every person in the room said, “you have ‘the Man’ doing the surgery today.” We met him preop, he was kind and humble with a soft spoken French accent. Danny came in to me signing the consent and was livid that it had gone all night undiagnosed. I felt grateful it was Dr. Ford on call and wasn’t upset with his care. William went off to surgery and we headed to the chapel to pray, study and cry some more. We had planned for Hayley to have breakfast with my mom and bring the kids back, we were so grateful they weren’t there yet. We spent the morning reading, taking care of business from home and continually praying. At about 11 am we wondered why he wasn’t out yet and were then informed that they had completed the surgery and were putting in a dialysis catheter. The kids and Hayley arrived. Thank goodness she could stay. We met with Dr. Ford. He explained that approximately half of William’s lower intestine (the right and transverse colon) were extremely necrotic and because of that the PC cath tip had poked a 2 mm hole in the colon. The placed a temporary ileostomy with a mucous fistula because the rest of his colon was still ischemic and they were unsure of its viability in time. He told us the ostomy would have to stay 2-3 months and then we would be “put back together.” When asked about his future with half a colon Dr. Ford responded “I expect him to be President of the United States; actually, I expect more from him than that.” He drew a picture of colon to show us exactly what happened and also told us people live their whole lives with no colon so even if he lost it all, he could still have a happy, fulfilled life. So many emotions went through us. It was the first day I really lost it. I have never enjoyed ostomies and now my son had one?! Also, William’s anatomy was forever altered and the future was so uncertain. I went up to ICU to see him. His dialysis changed to CVVH, a gentle continuous dialysis. His belly was so swollen and he had a large incision down his stomach. He was also sedated and on a respirator. It was too much for me. I left to take the kids out and let Danny and his family spend time with William. That day was particularly difficult to manage our emotions. Our family was there and didn’t understand everything, were suffering themselves and at times were not as sensitive as they could have been. It taught us we needed to be patient with others no matter how we were feeling and that we should never focus on ourselves. That really helped. The kids, Hayley, Wes and April walked to an art park nearby and walked around. Carter fell going up the steps and for forty-five minutes proceeded to say that he could not walk because of a broken leg. I tried everything and Wes did as well. Eventually, I got him to admit that he could walk, he was just sad everyone was focused on and talked about William. I felt like it was a normal reaction from a child and had more patience with him after that.
It was a difficult day a year ago. Today, however, my son looks like this: and we learned and grew so much through our experiences last summer.
While staying at the Ronald McDonald house, various groups brought in "Happy Meals" to the residents (and often our guests too). One group was a family who had stayed their previously and we realized that it would be great to be able to go back and do the same thing. They had raffles and made it feel like a party so we tried to do the same thing. I have never fed 90 people myself and felt a little overwhelmed at the task but, fortunately, we have great families who helped! We are also very grateful to Fresh and Easy, who donated a ton of chicken and discounted the rest, and to Juan Pollo, who discounted beans and rice for us!
Now, on to the cute pictures. :)
Grillmaster Papa with a whole lotta chicken!
Wes and Danny at the grill
The final handsome grill master, Eric :)
Claire, Peyton, Will, Ella and Carter all enjoying Ronald
The serving area before the food was placed. Sweet Sydnee who is due with our niece in one week can be seen at the back of the photo:)
Raffle prizes we all brought
Playing at RMDH--he's the only kid who hadn't been there before
Looking up at a CHLA hopsital, the same kind he was transported in
The dining room full of guests
The highlight of the night was definitely meeting the families who are staying there. We aren't sure why this little boys are casted but he sure is sweet. We also met the family of a 17 year old boy named Brian who is battling leukemia at CHLA right now. They were so kind and skyped him in his room. William said "hi" and "get better soon" to him. Brian's 13 year old sister was his bone marrow donor! It is inspiring to see the hope, courage and optimism of many families.
Us skyping with Brian
A smiling, happy courageous young man!
One of the dining room decorations
Our little family after the dinner
All of our family who came and helped! Thank you again!
We drove by and waved to CHLA. It is such a wonderful hospital!
One final picture of cute blondie cousins!
I thought more than once tonight of Matthew 25:40 which says "Inasmuch as ye have done it unto one the least of these my brethren, ye have done it unto me." Serving others brings great joy to our lives and we are happiest when we are thinking more of others than ourselves.
William is a handful but we are so grateful to have him as part of our family. As I reread what Dr. Ford said of his potential for greatness in his life, I feel assured that he is growing and learning and will eventually stop screaming so much. What a difference a year makes!
It was a year ago today that William was diagnosed withe.Coli 0157 h7 which led to HUS (Hemolytic-uremic syndrome) and, subsequently, caused complete kidney failure for 13+ days and the surgical removal of approximately 60% of his colon/lower intestine.
William went from Yosemite Valley, to a clinic, to Madera and from there he was airlifted to Los Angeles (Children's Hospital LA). Eventually he made his way to Kaiser Sunset and then on to Kaiser Fontana. There were many times when we thought we were going to lose little William; updates went from good to bad, and bad to good, sometimes on a daily basis.
It was one year ago that miracles began to happen and healing began to occur, albeit slowly. People came out of the woodwork in support of Will and his family. They were simultaneously worried about William and overjoyed at the love showered upon them.
In time, William's kidneys began to function again, at least partially, about a month after they failed. This was the first sign that he was pulling off a miracle. The doctors were optimistic but cautious at that point; Will's upper intestines were still outside his poor little body but his kidneys were still the primary concern.
Approximately two months after his initially hospitalization, William was "put back together again" and his kidney function looked vastly improved despite sustaining an unknown amount of permanent damage.
Finally "Baby William" was released from the hospital and after a return a few days later, he has only been back to see his nephrologist, Dr. Tong, for check ups and to say hello.
TODAY William has been told that within 3 months he should be off ALL his medications and should continue to grow and develop like any other child of his age.
TODAY he has some big scars on his tummy that stand as a reminder to us all of what we went through, the faith, prayers, and support we have felt throughout this trial. And a reminder of the gratitude to God for miracles!
Thank you for being a part of this journey with us and enjoy these sweet pictures of William TODAY!!!!
For a beautiful synopsis of his little life and recovery you can watch this beautiful video.
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