"Our Little Trooper"

"Our Little Trooper"
"Let me live, that I may praise you!" Psalm 119:175

Friday, September 28, 2012

"Po-ta-to, Pa-Tah-To"

Rowan is finally begining to resemble his normal self today. He even told me, "Now I'm starting to recover like a boss". Yep-that's Rowan:-)
This also means that he is starting to get his appetite back...However small of an issue that typically is for him, it is still an indicator that he is healing. As you know, 90% of his nutrition is recieved through nightly 12 hour intravenous tpn feeds, and 18-20 hour a day daily g-tube, non-allergenic, amino acid, man made formula, enteral g-tube feeds. Otherwise, he mainly eats potato products...one of the only foods he is not allergic to. Well, this is how I just "KNOW" he is starting to feel better:
Tonight Rowan asked me to make him potato pancakes, which for him consists of a mixture of potato flour, potato starch and water, pan fried in olive oil. But, its what he said when he ate them that made me realize how much better he was feeling...
"Mommy, thank you, these are perfect! I know I didn't really want to eat for a while, but now I do, ok? Tomorrow I want easy fries, and waffle fries, and then I guess baked potato. The next day I want baby hashbrowns, skinny hashbrowns, and then those potatoes you made me during the end of the Olympics, when One Direction was playing, you know, those potatoes? Then I guess the next day I want homemade potato chips...if you know how to make those yet, and then I guess surprise me after that, with any other potatoes we have, or any kind you can get."
This child literally recieves most of his food through a tube in his stomach or an iv line in his chest, and during this recent hospitalization and recovery period, he has not eaten anything by mouth for 2 weeks. He has lost several pounds during this ordeal and spent most of his days just laying on the couch, sleeping or hurting. Yet what does he get excited about??? The very limited choice of foods he has in his repertoire...potatoes! Once again, this kid has blown me away with his contentment, and his actual joy, found once again in the simple things...like potatoes.

Wednesday, September 19, 2012

"I can do this, I can..."

Through all the pain Rowan has been enduring over the past few months with these headaches, neck pain and other neurological issues caused by his Chiari, he told us what was hurting, described his symptoms in detail, but never, not once, actually complained or asked "why me?". He is just 6 years old. We would understand it, even expect it from someone his age, experiencing his level of pain. Then, over a week straight in the Pediatric Intensive Care Unit, two neurosurgeries within 6 days, anesthesia, post-op pain and nausea, a ridiculous amount of pain medication, and he still has not once actually complained. Not only has Rowan not complained, let me tell you some of the unbelievably selfless words that have come out of his mouth...
When someone here was telling me that it must be hard for me, sleeping in a chair for a week, being away from the other kids and Brian at home, Rowan looked sad and said "I guess that's really my fault, I'm the one who is needing her to be here with me."
When we had to tell him (multiple times) "Sorry, it's not time for more pain medication yet honey", he simply held his head and neck and said "Ok, I guess I just need to try to heal myself."
Again, when he wasn't allowed more pain medication just yet, but he was obviously hurting, he would squeeze his eyes closed tight and tell us "I can do this, I can".
Every time we try to rotate him to the opposite side of his body on the bed, to prevent stiffness and cramping, you can see him cringe, you can tell he wants to cry out in pain, but he just balls up his fists and grits his teeth and lets us move him, saying "ok, careful, thank you, ok can I lay back down now?"
Those of us who have been in the room when he says things like this are brought to immediate tears, almost brought to our knees. If he can endure such immense pain with so many setbacks and multiple restrictions, how can we really complain about anything in our daily lives? I know I can't. I am humbled and amazed by this kid, day after day, especially in the worst of his days. I hope he inspires you even half as much as he has me. I hope none of us find anything to complain about for a while. I hope we all say "I can do this, I can."

Thursday, September 13, 2012

"Which new pajamas will I wear for surgery Mommy?"

So as most of you know, Rowan is back in the Pediatric Intensive Care Unit at the hospital once again. Last week's brain mri and flow study showed the continued presence of a large Chiari malformation with blocked cerebral spinal fluid. He had a scheduled shunt revision/exporation surgery yesterday to try to rule out the shunt as the cause of his extreme headaches, neck pain, and other neuro symptoms. That did not end up being the apparent cause however, so Rowan is scheduled to go back into the operating room Monday for a more aggressive Chiari surgery which will include the surgeons cutting into the covering of his brain and sewing a dura patch into the lining in an effort to relieve pressure from the Chiari and open up the flow of csf once again.
This all sounds pretty heavy, right? Especially for a little boy who just turned 6 years old. And even more so for a little boy for whom this makes surgery number 52 and number 53. Well not for Rowan. For Rowan it's as simple as "Which new pajamas will I wear for surgery Mommy?"
This is a picture of Rowan the morning of this week's shunt surgery. He woke up happy as could be because he was wearing hand-me-down pajama pants from his big brother that he had never worn before. He said "These pajamas will give me all the love I need for surgery!"
Look at that face. No fear, no sadness, just joy that he was about to try to get his head fixed and that he could wear new pajama pants (that weren't even new:-)
Today when Rowan heard the surgeons discussing the surgery for next week, he simply said "Well, at least Cindy just bought me some new pajamas, so I can wear those this time and that will give me love for this brain surgery too."
It's the little things that matter, which Rowan constantly reminds us of...little things like new, and even hand-me-down, pajama pants:-)