Rowan's Story: March 2011

Tuesday, March 22, 2011

Sad to be here glad to be here...

Rowan woke up having a kind of rough morning: feeling sick, crying, saying that he wanted to be home now already.

Then he reached for his "Chwissie Wion", hugged it tight and closed his eyes for a minute.

When he opened them he said: "Ok I feel better. Its good to be here and bad to be here. I'm sad to be here and glad to be here."

He said, "Chrissie really is helping me. And at least there are 3 good things about hosipals...toys, bisitors, and getting better."

Thank you Lorraine and the entire Patterson Family, for Chrissie's story and for the jingly "Chwissie" lion to remind him of her. As you can see, good or bad, it never leaves his side in here, especially when he is sleeping. We love you!

Monday, March 21, 2011

"...But today could be better..."

Sorry I haven't posted a blog for a couple weeks. Rowan's been running fever for several weeks with his neupogen bone marrow infusions and then spiked a high fever on St. Patrick's Day, landing us back int he hospital last week. We are still here while he battles a septic infection, with two different bacterial bugs in his bloodstream. He has been getting 6 rounds of iv antibiotics each day. And now he's come down with some type of "normal sickness" while he is here too, and is running a fever again and has a nasty cough. They just did a chest xray to check on that and we are waiting for results. He is supposed to be getting another neupogen infusion here today as well as an echocardiagram to check for colonization of bacteria in the heart wall. Yesterday we had a little mis-hap with his g-tube, breaking off a piece of plastic inside it so we had to remove the end of his tube, clamp him off with hemastats and try to find someone to repair it.

Despite all of this, Rowan has kept his ever-positive outlook. This morning when he woke up, after a rough night of fevers, coughing fits and waves of nausea, Rowan woke up with this wise statement..."well yesterday was horrible but the good thing is that we wake up every day until we die and the new day COULD be better...and today WILL be better".

Gotta love this kid!

Thursday, March 3, 2011

Pancakes for Rowan!

Despite all his dietary limitations, Rowan doesn't really complain much about not getting to eat many regular foods by mouth, even though everyone else around him can. He does however LOVE to smell our food. And pancakes has been the one thing that he says he hopes he can have when he gets in heaven...he just thinks they smell so great. Well I have racked my brain for 2 years, checked all kinds of recipes and natural food stores, trying to figure out a way to make him some type of pancake. So he doesn't have to wait to get to heaven to have pancakes:-) He can't have any type of protien for sure, and no eggs, milk, or any type of flour, etc. So, I have thought about potato pancakes but haven't come up with a way to make them stick together like pancake batter. Well, last week I finally came across a product that is a mix for potato pancakes, but this one only has potato starch to bind it together. I was jumping up and down in the aisle when I read the ingredients. You have no idea how happy I was! Rowan cried happy tears when I got home. I made them and he has been eating them for a week now. Pancakes, finally, pancakes for Rowan!

In Memory of Rowan's 11th Birthday

http://a.co/4bNkv62

*Click the link above to purchase a gift in memory of Rowan's 11th birthday.*

In memory of Rowan's 11th birthday, July 21, we are hosting a virtual birthday party to benefit Methodist Children's Hospital (MCH) in San Antonio, where Rowan spent much of his childhood battling for his life. All gifts purchased through this registry will be delivered in person to MCH on Rowan's birthday, July 21, 2017. The toys will be donated to the Child Life Department at MCH and placed in the new play rooms at MCH for many pediatric patients to enjoy during their hospitalizations. The toys on this registry represent a few of Rowan's favorite things. We all know Rowan had such a huge heart for giving and making the good, so this party in his memory is a way of carrying out his legacy by celebrating and doing the things that mattered most to him. Thank you for being a part of carrying out Rowan's legacy, making the good, and honoring Rowan's powerful life while remembering his 11th birthday on July 21, 2017.

In ICU, post vp shunt surgery...precious angel.

In October of 2010, Rowan started having severe headaches again. He had two spinal taps, just three days apart due to increased cranial pressures (double or triple what they should be). They removed over 55 ccs of excess spinal fluid trying to relieve his headaches. Eventually, when the pain was just too severe and his pressures weren't coming down, he finally had to have a vp shunt placed. When he woke up the next day, he told one of the doctors that he would give him a free autograph for helping get rid of his headaches. A couple days later, he made a sign for me to put in the window of his hospital room, that he says said "Open for business. Autographs $15. Free drink with purchase".

Another battle wound...this one from his Chiari malformation brain surgery.

In January of 2009, Rowan had craniectomy/laminectomy surgery to correct a brain malformation that was obstructing his flow of spinal fluid and causing headaches and other neurological symptoms. They removed a small piece of the base of his skull, shrunk up the bottom portion of his brain, and removed part of his C1 and C2 vertebrae to free up space for the spinal fluid to flow. When we told Rowan that he would be going in to the hospital to get his brain fixed, he thought for a minute and then said, "Will I see Logan (favorite nurse) and can I eat baby ice cubes when I wake up?" When we said yes, he simply said "Ok, Let's do it!"