Isaiah's story.

Why am I always inclined to begin a passage with the word "so" ? I have noticed that lately and am now making a concerted effort to get that habit under control.

We left home around 1245 Monday afternoon. Oh the strategies we employ to keep Burrito's world spinning properly on his little axis, it truly blows my mind! I put him on the bus, packed the van, changed the laundry, washed dishes, cleaned up the before school messes, changed the baby and finally we were off. A quick stop for gas and to cash Dominique's check and we were on the road by 110 not bad all things considered!

It amazes me how good the baby was on the drive up. He never cried once. We stopped once at Medford Outlet to change and feed the baby. I am convinced that little pumpkin would have been content to keep on traveling although he did eat the entire 8 ounce bottle. He only snoozed for about 30 minutes the entire trip!

We arrived at the hotel around 530. The boys were eager to swim and I was eager to relax. The babe and I did just that, we hung out in the room and relaxed while the boys went to the pool. Around 8pm or so we loaded in the van and ventured out to find Mesa Pizza, a request of Dominique. And of course you say pizza for dinner and Isaiah is all over that! Seriously?? Hands Down! Mesa Pizza is the best pizza I have ever had! Oh! My! WOW! I had Pesto Artichoke and Spinach Feta, and was too full after the Pesto Artichoke to even eat the other one! The crust? Oh the crust was delicious! Make note you must try this pizza sometime!

A quick stop at Walmart where I promptly knocked a sign off the display right inside the door! Cody came to my rescue whilst the other 2 clowns laughed uncontrollably at my clumsiness! We bought a few snacks and headed back to the hotel. Shockingly Both Dominique and Cody were asleep before 1030! Baby had a bottle, played a bit and was fast asleep by 11!

Isaiah tossed and turned all night. Nerves I suppose. We got up bright and early and headed off to children's hospitals for testing. Isaiah was excited about 2 things. 1. He stayed awake for all testing. and 2. no needles!

As he was sliding into that huge tunnel of a machine a few things occurred to me. Since I forgot to bring a 'real' book all I had was my Kindle I had nothing to read for a good long time! (I still LOVE my Kindle!!) As I reached up to hold his foot, the only part of him not swallowed by the huge machine. I was flooded with memories and thought. Today was the first day ever that Spikes was not checked in, weighed, measured, wrist-banned, stickered, poked, tested right along with Isaiah. Spikes always rests right on Isaiah's chest and goes through everything his owner does. A very sad day for me not to see the worn fluff of the green Iguana dangling from Isaiah's fingers. At 15 I suppose he doesn't need the comfort of Spikes any longer. I almost asked him about it but decided maybe, just maybe I missed Spikes more than Isaiah might if reminded. Maybe I miss the little boy version of Isaiah. He is 15...FIFTEEN!!! That is CRAZY!

Slowly he is growing away from me. Bittersweet. I am excited to watch him grow surpassing all predictions of where he would be at each age. Sad to know that in 3 years (THREE!!) he will graduate and possibly head out on his own! AAAAAAAAAAAAAAAAAAAAAAAAA!!! (I don't even feel the slightest bit better) ;0) I am not ready to start letting go!

I went from remembering my 9 year old Isaiah laying limp and lifeless in the hospital bed next to my chair in PICU. to imagining whether or not he will allow me to hold his foot when he is 17. And what will that 17 year old foot feel like in my hand while the rest of him is swallowed up by the huge machine. Will he always look so small to me as he slides into the machine?

When the machine FINALLY spit him out, he was pale and shaky. I knew before I saw his face that he had struggled to stay calm through out the process. His feet would shake and his toes would wiggle. My grasp would gently tighten around his foot as I sent the code, 3 squeezes still means "I love you" We sat for a minute while he gained stability then moved to recovery.

Following the testing we had to make our way back to the van through the craziest parking ramp ever built! We wound our way through the streets of St. Paul searching for the office of radiology to pick up all the testing results on DVD to hand deliver to Dr. D. As we wound our way through the busy city streets I was once again flooded by memories of all the many trips we have made. It felt like every where I looked was a memory of a hospital visit. After picking up the DVD Isaiah announced he was HUNGRY! Which was my cue that he was back to normal. The search was on for a pair of shorts (which we forgot) and some food...of course! Quick stop at Target to purchase the shorts for his exams at the Shriner's Hospital later in the afternoon and then McDonald's to fill his tummy! YUCK! I had a salad and a tea. Not too bad I suppose.

We arrived 15 minutes early for our appointment with Dr. D Not bad for such a long stressful day. 5feet2inches tall???what?! That is 4 inches taller than doctors predicted he would achieve over his lifetime! We were taken to our room talked with a nurse and care coordinator then we waited. 20 minutes. 30 minutes. 1 hour. 1.5 hours at which point Mary Pat stopped in to let us know that Dr. was consulting with other doctors about Isaiah and hoped to be with us soon. Some time after 3pm Dr. D came in to the room. Put Isaiah's scans up on the screens, uttered a few fragmented sentences then quickly excused herself saying she wanted to be absolutely sure before discussing this with us.....OK...the last time this happened she brought me a chair asked me to sit and informed me that my son may never walk again....my heart was pounding, my head was spinning, and my phone did not work in the hospital. So it was me alone with my thoughts and Isaiah who was playing a game pretending we were not there at all! Nearly 40 minutes later she returned.

"I wanted to absolutely sure. Before I shared with you. I am SO SORRY you have been waiting, I know waiting is difficult." As she began to navigate her way around the scans on the screen she explained everything we saw. "The syrinx (cyst) in Isaiah's cervical spine is SHRINKING!!" (shrinking...no longer growing!) "What you did not know is that Isaiah has another Syrinx growing in his cord in the thoracic region of his spine. The plan WAS to prepare for surgery to address BOTH syrinx before Christmas. However the tests today show that both syrinx are shrinking. And the fluid is flowing freely, without obstruction, from his brain down the full length of his spine and back for the first time in his life....EVER. So, if it is alright with you, Mom, I will be happy to call him my Miracle Boy and am proud to say I am releasing him from my care. I do not need to see Isaiah again unless he drastically changes or is injured." Then she turned to Isaiah, " Isaiah, I want you to make friends, join clubs, be active in your youth group, golf, have fun and enjoy life! You are my favorite patient ever!" Dr. D made sure I understood that we were NOT being released by orthopedics and there was still a plan for spinal fusion surgery on the table. (that will be tomorrows journey not today!)

We took a picture, gave hugs, and she was gone. There I stood, for what seemed an eternity, in the same spot I had been standing the entire time. When finally, I realized I was frozen in time, I looked at my sweet boy and asked if he understood what had just happened. (I asked because he never talks, never looks up, never engages in the conversation so I am not sure if he is listening.) His look told me he was just as shocked as I was (yay! he was paying attention) I whispered. no. surgery. He threw his arms up in the air and hollered WOO HOO!!! and together we collected our belongings and walked out of the hospital feeling a thousand pounds lighter from the burden of neurosurgery being lifted off our shoulders for the first time in 6 years!!

We left the hospital to freshen up at the hotel and head straight to Legoland at the MOA! What a day! We met my friend Brad for dinner. Brad is an old family friend of my dads. It was nice visiting and made me feel closer to my dad in some way. It is so good to talk with someone who has the same wonderful memories of my dad as I do. The visit was good. We figured out that we have known each other since I was 13! that's a long time!

We meandered around the first level of the mall while Cody and Dominique did their thing.

Returned to the hotel around 830. Boys went swimming again and I bathed fed and put the baby down for the night.

Wednesday morning I arranged for a late check out from the hotel so Isaiah and I could go do the hospital thing again and the big boys could hang out and relax. As I stood by the van before heading to the hospital I was praying. Thanking God for all the amazing things He has done so far. The sky was bright blue with white puffy clouds scattered all about. I looked right above the hotel and saw a black and gray cloud, one dark cloud in the midst of a beautiful sky, then suddenly out of the northern side of the cloud shot a brilliant rainbow! (of course my camera was up ion the room! boo!)

We arrived at the hospital before 9 completed his Ortho tests and x-rays. Met with the Ortho team and finally Dr. G came in to visit with us. He too, showed us all the scans and x-rays. Explaining that the plan had been to do a spinal fusion skull to tailbone. However the scoliosis and lordosis in Isaiah's spine have begun to decrease. He no longer feels Isaiah is a surgical patient at this time. He cautioned us to adhere to the restrictions, participate in physical therapy to set up a home therapy routine, it would be good to join Tia Chi or Yoga, and return in a year. A YEAR!! what?!?! We ended our visit with a consult with the physical therapist who gave Isaiah exercises and talked about the what we will need to do to adapt a car so he can learn to drive! DRIVE?? Isaiah has been cleared to DRIVE!!

Isaiah and I left the hospital feeling as though we had just walked out of a dream.  

 
A miracle is an event attributed to divine intervention. A miracle is sometimes thought of as a perceptible interruption of the laws of nature. 
AKA my Isaiah!

We went and checked out of the hotel. All along the drive I looked around me at the amazing colors of the changing trees everything seemed more brilliant, more vivid than it had even yesterday. I kept thinking how I wished I could take photographs with my mind and print the pictures of today...
I am grateful for amazing doctors who invest their lives in helping to save the lives of children like Isaiah. I am thankful for Dominique who came along even though he hates hospitals just to make my load lighter and allow me to focus on Isaiah when I needed to. I am humbled at the GRACE that God has shown me in the healing of my Isaiah.   
 

preparing for tests @ Children's Hospital St. Paul

I make him crazy!

Waiting for Dr. D at Shriner's

still waiting

Isaiah and Dr. D

Isaiah in his favorite store!

Dominique and Cody

D and C assisting Isaiah in his purchases!

comparing prices...

Dom and Cody in Dom's  favorite store...CANDY!

Isaiah wanted me to take a picture of Woody made of Legos so I made him stand in.

boys hanging out

wish I had time to photograph all the beautiful leaves and the river.

Waiting for Ortho testing

waiting for Dr. G

sick of pictures!

happy miracle boy!!