A Dad's Dream

Long ago I thought about all the things I would get to do as a dad.  I thought about all the things my dad did with me.  I admired him for all the time he spent with my brother and I (and I still to this day consider my dad to be my hero).  Don't get me wrong, I love my mom but as others can attest, there is something special between a father and son.

When I found out I was going to have twin boys, I dreamt big.  Days of playing soccer, baseball, and golf danced in my head.   Lazy Saturdays watching college football and then playing catch outside.  Riding bikes or just running around the house were all things to look forward to.  And now?  Do I feel like I have been cheated?  Nope.  Not in the least.  It took me awhile to get over the idea that it wasn't fair.  It took me awhile to embrace the idea of being a parent of a special needs (which I don't necessarily like that phrase) child.  But I am there.  I have arrived.  I don't think anyone would question the love Kristi and I have for our kids.  Isaac and Elias Murdock.  Our boys.  We love them unconditionally.  Today is my 36th birthday.  I am thankful for so many things.  But at this moment I am most thankful for being given the gift of patience and the gift of an open mind.

Here's why.  Below is a poem that was written quite some time ago.  But it sums up my experience so far as a dad.  I can't wait to see what is next.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

He's got legs... and he knows how to use them!

Have we ever mentioned that Isaac does things in his own time, in his own way? Because if anyone does things to the beat of their own drum, it's that kid. 

When he was just out of surgery, and waking up from anesthesia, Dr. I (neurosurgeon) asked Isaac to move his legs, Isaac couldn't. Then he asked him to move his toes, and Isaac got super frustrated and said "I CAN'T. I DO IT WHEN I GET HOME." We quickly moved on, stayed optimistic and asked the poor kid 9 gagillion more times over the course of his 12 day, all-inclusive stay at CMH, if he could move his legs or his feet. Each time seemed to frustrate him more. 

Ryan and I went through lots of emotions processing all of this. On one hand, if we had opted to not do surgery, he would lose function of his legs at some unknown point in time, because it was made clear to us that where the spinal cord was compressed, the bone would eventually grow closed, essentially severing his cord. Ryan was the first to say that we needed to think of it this way - we are no worse of than if we had chosen to not go forward with surgery, either way, there was a chance of this happening (one had the immediate chance (surgery), and the other was 100% chance of it happening, just not knowing when).

Then we brought him home from the hospital - talk about gut wrenching. I set him on the floor to play, and he quickly tried to do his usual crawl to play, and quickly realized that his legs did not work. He let out such a desperation cry - and in such a sad voice 'I can't do it.' 

The guilt - oh the guilt. This is something that I did to him by having the surgery. Then the quick move to the thought of we made the decision to move forward to give him the best chance possible at retaining everything he had. I told myself over and over that we couldn't second guess this decision (and really - in retrospect - I honestly still feel that this was done at the most optimum time). Ryan came home from soccer, and then went through many of the same emotions. I'd reminded him of what he'd told me about We've shed tears, had mini melt downs, many hugs, but know that we have to be strong for Isaac.

So take a quick second and think of ALL of those emotions. Then we go to put the boys to bed on Monday night. Isaac had a quick bath to wash the incision, and Eli was taking a shower. I was doing a lotion massage on Isaac's legs, as we'd been shown to do, and all of the sudden - I felt him flex his quads. I yelled for Ryan. I stepped back, and he flexed his legs on his own a few more times, not in reflex to anything. He even flicked his feet a bit! Oh.My.Goodness. We were seeing the hope that Isaac needs to start rebuilding the communication in the motor pathway of his spinal cord. Hope that we'd thought might possibly be lost. Commence tears of joy. Hugs. High-fives! You should have seen the smile on Isaac's face! 

We don't know how much he will regain in his legs, if it will be more or less than what he had before. We have him in physical therapy (which he calls exercise class), we'll be working with him multiple times a day, and doing everything in our power to give him the best chances possible to do whatever it is he wants to do! What we do know is that it's going to be a long road for him, and it will be 6-9 months before we know where he 'stands' (no pun intended!), with what motor skills he will have in his legs. But for now - we'll keep our optimism and keep praying! 

Thanks for your continued prayers and following our family's journey! 

Hugs to everyone! 

And... We're Home!

While I am a bit surprised, based on what we were dealing with just two days ago, we are all under one roof tonight, sleeping in our own beds. We couldn't be more thankful!

Road to Recovery

Whew. The last few days have been intense! Now that he has been moved out to the floor, no more heavy duty pain meds, and mainly off the IV - he is nothing short of high maintenance! Isaac was moved out to the floor on Sunday afternoon, and started out wonderfully. He ate well, and drank about as well as Isaac drinks. His output however, waned considerably. Which brought us to Tuesday night. His stomach was so incredibly distended, we were all in pain on his behalf. He required quite a bit of intervention to get some relief, and we are still working on that. Last night, Dr. S ordered an indepth xray, which showed a large amount of stool in his bowel. He's had some treatments for relief, but unfortunately while he has been able to rid himself of some of the stool, his poor tummy continues to swell.  Isaac has had multiple xrays to try and solve this bowel issue.  We will continue to monitor it closely but it is heartbreaking as you can tell he is in obvious pain.

He has done an AMAZING trick - proving that the sensory pathway to his legs is intact. He still cannot move his legs or his feet, so we still are praying that in the days to come he will show some improvement in the motor pathway but for now we are encouraged by his sensation but obviously concerned about the lack of motor ability.  One of the offshoots of this problem is without the ability to feel his legs, he has considerable problems sitting up.  This means it is difficult for him to be active, which in turn would help his legs.  Ultimately this just means he is kind of in a catch 22.

So, to kind of recap, we are now on day 10 in the hospital, the surgery was successful on most fronts, but terribly concerning is the loss of motor skills in his legs and the increasing problems with his bowels, a problem that should have been dissappating by this point, not increasing.  The original plan was to go home on Monday, though we actually were hoping for Sunday night.  With the GI concerns, that discharge date is certainly up in the air.  We can only hope this little guys insides start working properly.

Thank you again for all the support.  When we know more we will do another blog post, sorry for the delay on this one!

 

Elias Steals the Show

Eli came to visit Isaac last night at CMH, and this was his exciting performance!

Continued Progress

Let me first start by saying that we continue to be thankful for the care and expertise that we have received. We have been blessed by truly wonderful medical team that we wouldn't trade for the world.

Isaac continues to make progress, and is moving his arms with much precision (read: sucking his thumb and trying to keep his nurses from messing with his IV). The doctors continue to be cautiously optimistic about movement in his legs. He responds to being pinched and poked, but still has not moved them spontaneously on his own. Because of the reactions we have seen, we know that the pathway from his legs to brain are there, which is where the cautious optimism comes into play. If he has those pathways, it is very hopeful that his ability prior to surgery will return. This is where our biggest prayer request is at this point - that wee continue to see marked improvement in his legs. He also needs to continue to eat well and drink so that we keep everyone else happy with his diet too :).

To help facilitate the best and quickest recovery possible, Isaac is still in the PICU. They are able to keep a very close eye on his blood pressure by keeping his arterial line in. They are trying to keep his Mean Arterial Number (MAP, or the bottom number of your blood pressure number) right around 70. The reasoning to keep it elevated is that this will help keep his spinal cord well perfused, which will give it blood flow that it needs to help these neuro connections work. He can't go out to a regular room as long as he still has his ART line, so we will stay in the PICU as long as we need to.

As for Eli, he is doing well. He has had a couple of play dates this past week thanks to our nanny, Jaime; and has made a road trip with his grandparents to go see his cousins. He got to have a slumber party in his room with Pops too! Tonight he is hanging out with Ryan... I think they're headed out to Sporting KC for his first soccer game! I bet he can't wait!

Thanks to all of our friends and families for all of the support you have given us. We can't thank you enough for all of the meals, prayers, thoughts, calls and texts. They mean so much to us!

Hugs from us!

 

Continued Amazement

We left off with the fact that the doctors had lost the neurological monitoring of Isaac's legs at the tail end of the surgery. We had a quick consult with Dr. I & Dr. S, and they discussed that it could mean several things. We were prepared to wait until the morning to know for sure what this meant for Isaac. But, of course, you know Isaac - he has his own agenda. It wasn't a full hour later, and the doctors came back down to tell us that he has already moved his legs on his own. That was an excruciating hour, and when we heard they were on their way to talk to us, I could only think that could be bad news.

Not only was it great news, it was amazing. Dr. S said that he pinched him (and that it might leave a mark :) ) and he moved his legs, and then he went ahead and moved them on his own after that. We are so incredibly thankful, blessed beyond understanding with your thoughts and prayers.

Since, Dr. I has been back to see him (we still haven't gotten to go back!), and Isaac has been extubated (another wow!), and Dr. I asked him if he would move his arms, to which he apparently responded with an abrupt "no." He then asked him to move his legs, and Isaac again responded with a quick "no."

We understand this is a a disjointed post, but we have now been back and seen Isaac.  He is understandably cranky.  He is tired, and obviously still a little scared.  However, he is already responding to questions, he is moving his arms and head freely, and whenever he feels like it, he is already allowed to drink and eat whenever he feels like it.  It is truly an amazing time right now.  We know tonight will be a long night, as a cranky little boy + buzzing nurses all night long = tough sleeping conditions.  But, as you might expect, we are incredibly thankful for everything we have been given.  It is a long day, but well worth it as we start to prepare for his transition to the floor (which will hopefully be late tomorrow sometime).

Again, while repetitive, thank you all for everything!