Weekend Get-Away

What lead up to our weekend getaway was complete chaos and stress. Every time we turned we were not sure it would really happen. So many things kept coming up. We had originally planned the trip as a quiet time for us to regroup and have the "last hoorah" so to speak before Isaiah's surgery in November. However since the MIRACLE happened we were even more excited to get away and just have some fun. It has been over a year since we have taken the children anywhere for fun. It was planned perfectly for the end of school conference week for all the kids but Isaiah, who attends Heritage Christian Academy. He would have to miss 2 more days of school. Well worth it I thought. When we planned our trip the plan was for the little Pumpkin to be transitioned back home to his family. However some comlications have arisen in the case and we still have him. I started asking fro permission to miss a visit way back in July nad was not given the yes until days before. Since we do not use respite and there is no one else who could watch him for a long weekend we were a litttle nervous that we would have to cancel our trip. But we finally got the go ahead. Then the court proceedings grew from 1 day to 2 into 3 weeks and kept creeping closer and closer to our time away. We were to leave Thursday after the kids got home (early out for Sam and Amaris, no school for the Burrito) We were packed and ready to leave by 1230. I had taken half of Thursday and all of Friday off of day care (I have 2 booys before and after school every day).
We were packed tighter then a can of sardines. I forgot how much you have to take for babies. and I am a conservative packer. The drive was a little more than 3 hours. The children were very good. Well. Sama is Sam nad we had some issues but over all they all traveled well. We arrived checked in to the cabin unpacked and I went to the store to buy our food. I LOVE staying in the cabins. I have a kitchen, the kids have space to spread out and play games, we can run and play right outside the cabin. Perfect vacation solution for us. (besides I hate hotels, HATE them!) I had the weekend menus all planned out so was not gone long.
We spent the rest of Thursday and Friday exploring around the lake, searching for rocks and shells, 'fishing', and playing on the coolest payground ever. We ate Lupper which is what my kids call it when you eat half way between lunch and supper you know, kind of like brunch. ;0) then we took thekids to the indoor water park. A pleasant surprise, off season prices are half the seasonal prices. The kids all had a wonderful time I tried to capture some photos but the lighting in there was poor at best and I had the little pumpkin, who by the way LOVES the pool. The hotel has halloween activities so we stayed and did the corn maze, well, we attempted t do the corn maze.....the paper said no chracters or actors in the childrens corn maze, scare factor of 0 for the maze. PERFECT we thought, you know the Burrito does not do well in these situations anyway then you factor in unexpected scares and surprises and forget it! Scott and the older kids were leading our line through the doors to the maze as Sam entered the door with the Burrito on his heels a guy dressed as a scarecrow jumped out and as he turned not only did he yell to scare us but he also had a very scary mask on. I almost wish I would of had the video camers. You have never seen a person move in terror as quickly as the Burrito did. That was it, he was done, there was no getting him back in there. Thanks Mr. Scarecrow....and Sam. HAHAHAHA Sam who adamently declares "I am not afraid of anything!!" absolutely flat out refused to participate in anything else halloween. We waived our surrender flags and packed up to head back to the Cabin.
Saturday we spent a lot of time at the lake. It was the nicest day of the weekend the kids even took shoes and socks off the play in the sand and some even braved the waters edge. the little Pumkin napped at the beach. He loves being outdoors. Honestly I can't believe what a good boy he was the entire trip!
Scott decided he wanted to eat at the hotel resteraunt for dinner. (Something I never enjoy) eating out with children is one of my least favorite family activities, which is one of the reasons I love cabins, it eliminates the need for eating out. The view from the table was breathtaking, we watched the sunset on the lake. And for the most part the kids were well behaved. Saturday was the first day/night that it was not too windy for a campfire. We had a nice fire, made smores and told stories. One of my favorite things ever is to sit by a campfire on a beatiful crisp fall evening. Nice way to end our weekend getaway.
Sunday morning we cleaned the cabin, explored the lake one more time then packed the little sardine back in the van.
It was so nice to get away. It was very peaceful up at the lake and made me think of how much I crave that kind of peace in my daily life. I decided I am going to work harder at bringing that same kind of peace home. I crave a more simple life. As soon as things settle down a bit I am going to put a simplifying my life plan into place. One step at a time.
I will post a slideshow of the best pictures soon!

Funny. I was absolutely convinced my reality check had already occurred. Now I am thinking I may have missed the signs or misinterpreted them anyway.
Going back a little to show a clearer picture. Burrito arrived at 5 months old. failure to thrive. he was like a newborn baby, only disconnected with the world. he was so lethargic and glassy eyed. no smiles were shared. no response to sound or touch or sight. he had hit no mile stones thus far. he arrived with intense services in place. OT PT specialists so many doctors I had to buy a book to keep track of who we needed to see who was coming where we were going. he had issues with his head first they thought hydrocephaly then ruled it out finally determined he had an usually large increase of space, empty space in the sub-arachnoid region of his skull. (the area between the brain and interior skull. this increased risk of brain injury so we added more services and a protective helmet. almost right away we began to see progress. little glimmers of hope that a baby boy was inside of that glassy eyed head. I studied failure to thrive, pulled out all the sensory training I had done for Sam, studied attachment and worked. worked hard day and night to turn this baby around. tests. services. interventions. therapies. going out for services bringing professionals in for services. documenting details. learning his little quirks and celebrating his progress. I can not count the number of professionals involved who would see him at 1 month post placement 4 months 6 months a year and even now. the response is always the same. "This can't be the same baby/child!" His overall prognosis went from grim to hopeful within a year. yes we still had obstacles to overcome. yes we still had progress to be made. but no one could deny the amazing leaps of progress he had achieved in such a short amount of time. When you go from failing to thrive disconnected smaller than a newborn baby at 5 months old to cooing and interacting and smiling it is easy to miss the new warning signs that something just may be amiss. It becomes easy to explain away 'little things' that may actually be 'bigger things". I am usually a take it head on kind of girl. give me the facts and a solution and a plan and I will take off running. we had bumps in the road that seemed difficult to manage and overcome but I constantly had this reference in the crevices of my mind of who he WAS and how far he had already come that it was easy to explain things away and ignore them.
it finally hit me one day that things may not be as great super and wonderful as I had convinced myself. I mean looking around me i saw other mothers with same-aged children and they didn't deal with intense tantrums that can't be difused. or the screaming...oh the screaming for hours. hair pulling. my poor baby is 4 years old and never had a haircut. once we came close to needing one he had the loveliest curls and then began pulling again and has not stopped.the eating things like rocks and sucking on fences. not typical I KNOW but ... night terrors never ever not one time sleeping through the night. obsessions with small number of activities. such as Cars from the movie Cars. veggie tales movies and songs. action figures from toy story. baseball. baseball. can't forget baseball. his amazing talent for escaping from ANYWHERE. you can't turn your back for one second. He can unlock locked doors and deadbolts, he can climb fences he can weasel his way out of anywhere any time the notion hits him. and fear? what is that? he is not afraid of anything. curious yes! afraid not so much! the strangest things calm him and set him off. too many people talking at once or someone talking while the TV is on or people laughing as a collected group. all make him crazy he will put his hands tight around his ears and scream this high pitched scream that sounds more like an animal barking than a child squealing. one day we stumbled upon a magic remedy for long drawn out screaming tiresome tantrums that occur anywhere and everywhere. quite simple and yet we never thought of trying before. MUSIC not just any music but crazy rock loud and yes, even screaming music. Queen is a favorite of his he loves Fat Bottomed Girl and We will Rock You. Who knew!? A whole new world opened to me that day. Dominique spent an entire day experimenting with various music and its effects on Burrito. The end result is a CD that is nearly 3 hours long of music that soothes him a progression from the hardest of hard to classical piano at the end. I tell you what. I never leave home without it! I can now successfully go to a store with Burrito and NOT have a screaming melt down that always resulted in nasty whispers and stares from judgmental people. I made the mistake a few time of not having the IPod or CD with me and the tantrum that ensued and grew to epic proportions was enough to teach me a hard lesson! I will gladly sing Fat Bottomed Girl at the top of my off key out of tuned voice if it will bring peace to his little world. We have all kinds of little tricks we have employed over the last 2 years to keep his little world spinning just so.The funny thing is, I never ever entertained the notion that a doctor would say Autism. Good golly I was a house parent in a home for autistic children when I was in my 20's I knew what Autism was and this? My Burrito was not that....was he?? He didn't have the hand flapping rocking or self stimming behaviors at least not to the radical degree I saw way back when....he talks. he snuggles. he is bonded to me. There is something going on but not that.....so I finally followed recommendations and had him evaluated. Lo and behold...he landed his sweet little quirky self on the spectrum. with Pica and Tricholtilomania. (eating inappropriate things and compulsive hair-pulling). Even after the feed back session with the doctor and all her 24 recommendations I still was not convinced. I was still stuck in the place of looking back at all his progress. in 4 short years he has accomplished a million things more than ever thought. I see his life in terms of progress beyond expectation and not in terms of what is actually happening right now. So I was doing a HUGE disservice to my child. I was so blinded by that leaps of progress that I didn't hear the alarms that have been sounding warning us that something is not quite right. I have spent so much time accommodating him that I never realized I could be hurting him too. So I began to study. read. ask questions. search and seek out other parents who parent autistic children and what I am learning and reading and hearing frightens me just a tad. I have been FEEDING his compulsions and quirks with all my accommodating. and what i see lying just over the horizon of the next few years is a mountain I am not sure I will be able to climb. I need to get myself in check and educate myself on how to help my son without over indulging his quirks and obsessions. I need to be trained on how to parent all over again. These quirks are one thing to look at and deal with at 4 years old. But what will happen when he is 9? What will the rages and tantrums look like then? will fat bottom girl still soothe his rage? So please if you witness me struggling in a public forum with a screaming little man don't whisper and snicker about what a brat he is and how you can not believe he would say such inappropriate things at such a young age. don't pass judgement upon my poor parenting and say that I just need to spank him because it is not that simple and there is no magic cure. he picks up on all the most inappropriate things he hears he will not hesitate to announce in the check out line at the local grocery store that he LOVES babooms (boobies) nice! or pop off with an idiot or stupid he is not a naughty little boy. He is Autistic and his mom is trying very hard to figure out how to parent him and help him the best way she can. so the next time you see me or another frazzled mom struggling through a traumatic trip in the store. offer to help unload her cart. offer to push the cart out of the way while she is holding the raging child. smile at her. say a silent prayer. but whatever you do do not judge her. she is likely carrying a load you could not understand...more to come on our reality check as reality checks me! 

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!!