We push for Natalie

We celebrated Natalie's 4th Birthday a day early! We went to Chuck E Cheese and played, ate mediocre pizza, and spent a ridiculous number of tokens. All the while the anticipation of the MRI ahead looming.

With an 11 am arrival time was a challenge due to the fact that Natalie would have to be NPO 6 hours prior. Since I didn't think she would take kindly to a 5 am breakfast I opted for plan B...keep her up ridiculously late with the hope she would sleep late. Plan B worked like a charm. We woke her up at 0930 and left the house at 10 with no request for food or drink. With her brand new Nintendo DS in hand and a ball of nerves in my stomach we headed down I29 toward the test we have long awaited.

Natalie was not keen on any part of the trip to the hospital. After 10mg oral Versed she loosened up and the Anesthesia crew was able to wheel her back into the MRI room to sedate her further. Approximately (and probably much later) one hour later they reemerge with our very groggy little girl rolling down the halls like a tiny china doll in over-side bed. All the while my heart has been aching for the results.

Shortly after they drop us off in the Post Anesthesia waiting room a nurse reemerges requesting Natalie's parents. We barely made it though the large double doors and can hear the whimpering of a scared and delirious Natalie. They call this "Cevo Delirium". Cevo is the gas they use to help get children sleepy prior to deep sedation and this can cause a type of hysteria when they re-awake...good to know. I scoop her up and rock her on the side of the bed, the crying slowly subsides. Within a few minutes we are cleared to go and are back in our car anticipating a long wait before we hear results.

Around 6:30 pm while sitting down to dinner with the family I get a phone call. It's the Dr. The results from the MRI I back, and aren't as promising as we had all been praying for. Natalie has a cyst/lesion on her spinal cord from level T5-T9 (approximately the level of her shoulder blades), she has a mass on the outside of her spine (the mass I had originally found), a cyst in her kidney, and a cyst/lymph node in her pelvis. In case that was all overwhelming to you don't feel bad it was to the pediatrician also. The spinal lesion was well above the original area of interest, the image of the lump on her spine was inconclusive, and then there were additional incidental findings elsewhere.

While I had been praying/hoping/and begging for benign results, my heart sank with the findings. The pediatrician recommends and MRI of the brain and CT of the abdomen and pelvis. The finding were reported after 6pm and therefore tonight the plan of action is limited to waiting. So we wait.

In the mean time I take the report to a family friend who is an MD that can help interpret the results. After breaking down the report and grasping the gravity of what is happening inside Natalie's tiny spine it appears as though she will be needing a Neurosurgeon.

Tomorrow we push. We push to get her in with the best Pediatric Neurosurgeon we can, we push for additional tests, we push for answers. We push for Natalie.

Excuse me while I take a more serious tone for a moment:

For those of you who do not know already we are in the middle of quite a health scare with Natalie. It all started about 3 weeks ago when I found a quarter sized lump on Natalie's spine when she was getting dressed. I immediately called the Dr. and took her to her pediatrician. This pediatrician ran simple blood work and said he didn't want to see her back for three weeks in order to rule out any possibility of trauma causing swelling. Going with my motherly instinct I called and got her in with a KU pediatrician for a second opinion.

While at the KU pediatrician I reviewed the series of events that have transpired over the last year: March '09 lumps were found on Natalie's head, Natalie's abdomen has been unusually distended for at least the last year, recent developement of the lump on the spine. Dr. Rozina, the newly hired, KU pediatrician immediately ordered an abdominal ultrasound, and MRI of the spine.

0800: Friday June 25th Natalie had her abdominal ultrasound in an attempt to get to the bottom of her chronic abdominal distention.

0530: Friday evening Dr. Rozina calls with results. "Liver enlargement, bilateral kidney enlargement, and spleen is the upper side of norma. Could indicated lymphoma or leukemia." They have made us an appointment with Pediatric Hematology Oncology Monday. In addition to the our appointment at the Cancer Center we had a 0800 appointment for an MRI and additional blood work and urine testing.

My greatest fear was just confirmed. All of these unrelated symptoms could be a sign of every parents worst nightmare. After 5 minutes of shock I gathered myself enough to call my husband and give him the bad news. (Chris was still in Wisconsin with his Reserve unit completing 3 weeks of annual training.)

Fast forward through the most grueling weekend any parent can imagine.

Monday morning: After 2 mg Valium and waking up at 0600 Natalie is wide awake and not having any part of the MRI. MRI mission aborted and we head upstairs to the lab for blood work and leaving a urine sample.

Monday noon: Lunch with my newly married brother and his wife to re-center before our long anticipated appointment at the cancer center.

Monday 0100: Cancer center appoinment with Dr. Kumar. We are reassured that Natalie's blood work is negative for signs of lymphoma or leukemia, she does not have palpable lymph nodes besides the one on her head, she is not displaying classic signs or symptoms of lymphoma or leukemia and the initial plan for a Tuesday morning bone marrow biopsy will be canceled. Dr. Kumar wants a MRI with deep sedation in order to diagnose the lump on Natalie's spine and check for enlarged lymph nodes in her mediastinum, the area behind her breast bone.

Unfortunately the first available appoitment for an MRI with deep sedation is July 7th, our little girls 4th birthday...I guess we will take it. In the mean time we try to live our life as normal and be thankful for all the signs of health that she displays everyday. We are hoping to hear results about this MRI by evening of the 7th. In attempt to streamline the information update I will be posting an update. Look for the update here!

Perv Alert!

The movie Toy Story is an all time favorite at Casa de Smiley. Our boys are particularly enthusiastic about the film and it's characters. It wasn't until recently when Noah and Nathan were fighting over a Toy Story toy that I realized, "Disney has turned my boys into pervs!"
Noah was running through the house yelling at his brother:

"Don't touch my Woody."
"That's my Woody."
"Nathan won't give me Woody"
"You broke my Woody."
"Give me my Woody."
"No I want big Woody" (we have multiple sizes of the toy)

Chris and I just looked at each other and said "Never noticed how weird that name was before." I knew that I couldn't stop the boys because 1. they wouldn't get it the risk of them asking questions was too high, and 2. that would have killed my entertainment for the evening. So Chris and I just sat back as our immature minds soaked up all the subliminal humor the creators of Toy Story must have intended when naming characters. Thank you Disney for an evening of free immature entertainment and making my children sound like complete perverts. Walt would be proud!

Keep your eye on this one!

We have been attempting to potty train Noah this last week. We have ditched all diapers and have vowed to not purchase another bag of diapers ever again! Until today, when Noah decided Toy Story 2 was far more important than making the ten step journey to the toilet to deposit his gifts from down under. Noah was proud of his rather large achievement he left on my bedroom floor while left to run the house naked from the waist down. He marched down the stairs to say "Mommy I POOPED!" When we walked into my room my eyes bugged and I yelled "ON THE FLOOR?" And Noah responded "YEAH, SEE!" You have to keep your eye, and Pull-Ups, on this one.

This only further supports my theory that children are born heathens that have to be tamed by their parents in order to become civilized...Chris and I have dropped the ball on this one!

Casa de Smiley

We sit down every night to enjoy a moderately delicious meal. some stories of the day, and the beautiful sound of at least one bodily function...here's how tonight's events played out:

• Nathan was sharing (a presumed to be made-up) story about how the "Boogie Man" trying to catch him while coming to our room in the middle of the night...cue Chris (aka Dad) calling Nathan out on his story and proceeding to "call the Boogie Man" on his cell phone. Chris had (a very convincing) conversation with the Boogie man about his whereabouts the night before and the time given in Nathan's story. Nathan's face went from a curious grin to a lifeless pale color with now emotion while watching his father question the Boogie Man as if they had been best friends forever. While Chris asked the Boogie Man when he ate at the restaurant he was at the previous night and would he recommend Chris try it next time he eats at this establishment Nathan's eyes began to wander in a panic. The wheels were spinning. Was his dad serious? Did the Boogie Man really exist? This was supposed to just be a story to justify his late night excursion to his parents bed...his plan had backfired and all we had to do was sit back and wait for the confession! I know what you are probably thinking, teach a child not to lie by lying?!? And my only response...I'll be doing the judging here people!
  


• While Nathan sat pondering how he was going to find out the truth behind the Boogie Natalie ripped a fart so loud I'm pretty sure Jesus heard it. While farts are always funny, no matter how mature you think you are, it was not the fart that had me on the verge of wetting myself like an elderly woman with a sneezing fit. Natalie in response to her own fart says "Oh I need to poop like the fart said!" and ran to the bathroom! (I couldn't make this stuff up)



• Natalie sat on the stool with here feet dangling in the air hollering "MOMMY" and Noah responding "YES" Natalie repeats "Mommy" and Noah responds "YES". Natalie cranked up the volume, thinking I couldn't hear when in reality I was not able to respond due to the relentless giggling. On the last go round Natalie screeched "Mommy will you wipe my butt?" and Noah responded "OK!" At this point I stepped in seeing as I am the official butt wiper of the house. Noah had also proclaimed earlier in the night that "My BOO BOO EXPLODED!" He was in no shape to be doing any wiping post explosion...haha (that will be explained in the upcoming post)



• That ladies and gentleman is how an average evening at the Smiley Dinner Table unravels.

That's not normal?

As we drove down the road Nathan began a conversation that I was not prepared for:

Nathan: "Mommy, how do they make electricity? And what is electricity anyway?"

Emily: "I don't really know how to explain that Nathan. You should call Grandpa Peg and ask him." (My kids call my dad grandpa peg)

Nathan: "I thought you said you were smart. I guess you were wrong and your dad is the smart one."

Emily: I just hung my head and said "I guess you're right Nathan." ...internal dialogue (Oh lord! Why does he ask me such hard questions that I can't answer? Where are the questions like "where do babies come from?" I could totally handle that one!)

(Nathan stacking blocks 14 high at 2.)

From a very early age people have been telling me Nathan is "very bright". Being a first time mom I assumed that was just the polite thing people say...but looking back I realize maybe I should have listened. The signs were a little more subtle earlier...like developmental achievements at an early age like walking up stairs alternating feet and vertical jumps. Then there was the stacking blocks 15 high at 2. It was around 3 that THE IMAGINATION took over. It was on a recent car ride to the pharmacy it finally struck me that Nathan is different. (a lot of important stuff happens in our car apparently)

"HLS BLS"

"HLS BLS"...that was what I found on the last page of Nathan's most recent book he made at school. In case you aren't able to decipher his spelling it says "hells bells". (Not bad words in my book) I'm not proud of the fact that my child went to school and regurgitated one of my frequently used frustration phrases, but I sure as hell am proud that he used it correctly. Lets be serious people it could have been worse. He could be throwing these words around irresponsibly and at every opportunity. Perhaps this is the reason his school is testing him for the gifted program. Could it be that his vocabulary is not limited to "poopy" and "oops" but rather he will can accurately explain to you the difference between "as" and "ass" as he did one evening on a quiet ride to get a haircut;
Nathan: "Mommy, did you know 'as' is a good word and a bad word?"
Emily: "Oh really? Can you tell me how?"
Nathan: "Yeah, because 'as' is a good word but 'ass' is a bad word...and 'freakin ass' is a really bad word."
Emily: "Indeed. I'm glad we are clear on that." (Giggling to myself in the dark in the front seat)
Now before everyone starts looking up the number for DFS let me explain my opinion on language with children. Children need to understand that some words carry more heat than others and that there are lots of words to choose from to express yourself. I encourage Nathan to use words to describe his feelings and save the heavier words for really special feelings. I have effectively and successfully taken the thrill out of cussing in a child's eyes. Therefore fulfilling my job as a mother in claiming yet another victim in my quest to kill all fun.