Spinal Surgery Thoughts and Updates

Isaac had a full MRI and CT Scan back in May, to which the results were what we found to be astounding. Dr. S, his main Orthopedic Surgeon, positioned him in different ways to attempt to detect gross movement in Isaac's spine. We waited and waited on these test results. Finally, we received a call, and the most detailed information that we had was that "There is no gross movement in Isaacs spine. Dr. S is not recommending surgery urgently at this time."

To which we'd internally translated this to mean that Isaac would not need a spinal stabiliation surgery. However, that assumpton was just that, an assumption.

It was the first day of our summer vacation in late June/early July, when we received a call from Dr. S's nurse, letting us know that we'd need to set up a consultation with Neurosurgery and Orthopedics, to discuss the future path for Isaac, and his need for surgery. To say that we were taken aback would be an understatement. For those that have been following Isaac's story from the beginning know that we had been prepared for surgery from the very beginning, but it had always been pushed off. Initially, it was because of weight, then because he was functioning fine, and there were no presenting factors to warrant surgery, and then, after the last course of tests, we thought we'd "made it out of the woods" and were escaping the surgery altogether.

We scheduled our next appointment with Neurology, and Isaac 'performed' for the doctor, and was able to detect hot/cold correctly on his feet 8 out of 10 times. Based on other tests or quizzes the doc gave him, we were told that Isaac would 'likely' have control of his bladder and bowels. HALLELUJA! (Side note - we've had several victories lately in this realm - Isaac asked tonight "I go potty and get a sticker?" - Sure enough, SUCCESS!)

Isaac then had another MRI and CT this fall, and following that, we met with Dr. I from Neurosurgery and Dr. S from Orthopedics, and our course of action was set out before us. We had a very involved "family" meeting with Dr. S and Dr. I, as well as one of Isaac's First Step's providers, Nicole. We learned what we already knew by now. Isaac needed surgery, and it needed to be sooner rather than later. The surgery is now being proposed to be preformed in two steps, rather than one. The first surgery is scheduled to last about 5-6 hours, and involves placing titanium rods on either side of his spine, that will attach to his uppermost rib and down to his pelvis. This is for stabilization, and they will be lengthened each year (which means repeated surgeries). The second surgery, which is currently scheduled for later this spring, and it involves the resection of the spine. This is necessary, as Isaac's spinal column gets very narrow, and makes several turns, and in the same area, his spinal cord is thinned to a few fibers. The goal is for him to maintain the uses that Isaac has today, and to keep him from losing function. It is not out of the realm of possibilities for him to gain functionality, but that is not the goal of the surgery.

So, here we are, the night before surgery number 1. Very thankful, anxious, peaceful, humbled, amazed, prayerful, and many other descriptors.

A Note From Dad

A Note From Dad

It has been quite some time since I have posted to the blog as usually Kristi and I are making a post together or she has found time to write a few by herself (I have no idea how she finds the time, she is amazing that way).  Anyway, I really have been doing a ton of thinking here leading up to Isaac’s surgery on Tuesday and thought writing a blog post of all my random thoughts could be rather therapeutic.  It has been a long road to this point, and I really do believe that we are just now making a turn onto the highway.  And while going faster forward is good, there certainly seem to be more pitfalls to avoid. 

                  Kristi and I made the decision to go ahead with Isaac’s surgery for many different reasons, reasons I am not going to get into on a public blog, but suffice it to say, we had lengthy conversations on this topic, weighed the pros and cons, and ultimately decided this course of action was best for Isaac.  We know it will difficult for him, and I can only imagine the questions he will ultimately have about his condition, but I am confident we will be able to explain to him our rationale and that he will understand (even at this young age) that we are doing what all parties involved believe is the very best for him.

                  I worry about Isaac during surgery, I worry about Isaac after surgery and in the days and weeks he will be in recovery.  I worry about Eli missing his big brother, I worry about Eli and how he will react once Isaac is home.  I worry about my wife, who has done so much through all of this, I worry that she is pulling a heavier load than me, and I desperately want to shoulder more of the burden to help her out.  She needs that, but more importantly, she deserves that.  The number of times that she is able to remember things that need to be done for the boys (outside of their normal schedules) is truly astonishing.  I don’t know how she does it.  I really don’t.  Not only can she do all that, but she continues to plug away at work, sometimes working well into the night to try and get caught up so she can do something for our boys the next day.  I love her, she is inspiring. 

                  I worry about our families, who have been so good to us.  They continue to support us and we will never be able to repay them for this.  Tim, Laine, Roxy, John, Brett, Katie, and Duke have been absolutely awesome.  The number of times they have stepped in and allowed Kristi and I a break is off the charts.  Thank you.  My parents, Kevin and Debbie, who look after the boys whenever we need them too and who have spent countless hours having dinner with us we can never thank you enough.  The boys love the trains by the way!  To my brother and sister-in-law, Russ and Andrea, I am always amazed how you call at just the right time, or have something awesome to say just when we need it.  We sometimes don’t do a great job of keeping people updated, but you guys have always come through and we appreciate that so much.  We have to do better (meaning Kristi and I) of getting out to Manhattan cause we love hanging out at your place and letting the boys play.  To Lisa, you have absolutely terrific to us and we can’t ever say thank you enough.  You come over at a moment’s notice, and routinely spend time with the boys, especially when Kristi would have had to spend the night by herself due to me having soccer or basketball games.  Thank you.  To Dale and Sue and Cassie, you guys have never once waivered when we asked to drop them off so we could go to our church small group.  You have come to our when needed and it is always fun to have you around.  And even though there was a small issue, Colorado was absolutely a blast.  We had so much fun and it was so nice to get out and see you all there, we can’t thank you enough.  

                 To our extended family (and I will forget people here and I apologize) Lynne, Mike, Erica, Carrie, Paula, Monica, Kathy, Cathy J, and anyone else who has helped us through these first 3 years, thank you so much.  Our support network is unbelievable.  To our friends, Jennifer and Kenny, Casey and Abby, Marty and Meg, Cassie and Bryan, Hannah and Paul, Maureen, and anyone else who I am sure I am forgetting, thank you for being around when we either needed someone to talk to, or a fun night or day on the town.  We appreciate you all.  To our small group at church, you guys are invaluable, even though we don’t get there often enough.  We routinely think about you all, including those that aren’t with the group anymore.  Thank you all for helpful prayers, and for just asking, “how are you”?  We really do appreciate that so much.   Like I have said, I am sure I am leaving people out, and I don’t mean to.  

                But I want to finish by thanking our caretakers of Isaac and Eli.  Nicole, you are truly amazing and we are thankful for having you for this journey from the very beginning.  I know Isaac has given you fits, but he wouldn’t be where he is today without you.  To Jaci, you have always been so helpful in getting the equipment Isaac needs and for pushing him to do more.  Thank you for all your help.  To Sherri, thank you for helping with Isaac’s eating issues, we know we are quite done with this problem yet, but hopefully we continue to make progress.  To Amy, I am going to blame you (in a fun way!) for Isaac talking ALL THE TIME.  Thanks, I think!!!  J  To Dana, thanks for assuring us that Isaac can grow on his own curve, we continue to hope he can make strides and you routinely have had the answers that get him going again.  So, thank you so much for that.  And finally, thank you Jaime.  I would guess you didn’t sign up for all of these different complications that come up with Isaac and Elias.  But, you have done so much for them that it would be impossible to recount all the ways you have helped these boys.  We rely so heavily on you and you always come through.  Thank you so much.  We know these next couple of months will be taxing on everyone and we are thankful to have you to help us through them. 

               You know, Isaac and Eli are really amazing little guys.  They give each other hugs, they talk to one another all the time, and they are learning to play together (which is awesome to watch).  But more than that, sometimes I just take a step back and just smile (kinda to myself!) because these are our boys, MY boys, and they absolutely have a daddy who will go to the end of the earth for them.  I want them to have everything (within reason of course).  I want them to dream big, and I want them to always support one another.  I had someone at my school the other day tell me to not worry, the docs know what they are doing.  But I kindly responded it is my job to worry about my boys, and I don’t mind doing that.  No surgery is routine for a 2 ½ year old.  I don’t buy that, but I am confident in our medical team.  I want Isaac to get better, it is that simple.  Our definition of better is probably skewed a bit, but I do think this surgery will make him better.  I am so excited thinking about what the summer will look like in our household.   It is certainly true that Kristi and I have been getting a little more anxious as what we hoped would never have to happen will indeed occur.  However, maybe having this surgery and the subsequent one in February will be a blessing.  It will allow us to know that after it is done, this is our Isaac, and we can help him reach his full potential.  I am sure it will be a tough road, but I am looking forward to their 3^rd birthday and these next few months are hopefully just a speedbump until that party.  

  

Christmas Vacation, Christmas Vacation

We were so fortunate to get to take a quick get away between Christmas and New Year's with the boys and Gigi and Pops. We went out to Winter Park, CO and visited Ryan's Aunt and Uncle (affectionately referred to as Aunt Susie and Uncle Dale by the boys). We took a van and all 6 of us rode out there together. It was really nice to be together, get away for a few days and the boys got to go on "tay-cation" (as Eli referred to it)!

Ryan got to ski with Dale, Sue and Cassie, which was lots of fun for him. Ryan hasn't been skiing in several years, mainly due to the fact that the last time the two of us went skiing, one of us ended up needing an ACL repair, and lets just say it wasn't Ryan. He got to ski two days and traversed blue and black trails all over Winter Park and Mary Jane.  He did not fall one time (which apparently is more than can be said for Dale and Sue!  hehehe).  The weather was beautiful and it wasn't too cold to even take a couple of trips up the Panoramic Express lift to the true top of the mountain.  I've been a bit reluctant to hit up the slopes!

The boys and I bundled up one afternoon with Gigi and played outside in the snow. Much to my surprise, Isaac HATED being out in the cold, and we couldn't get Eli to come back in! Eli kept telling us "My hands wawrm. My hands weally wawrm."

First Trip to the Mountains 

Snow Angel Eli

Flying with Gigi! 

Isaac - much happier inside! 

The last evening we were there, we had an impromptu ladies night out, and went tubing. Yes, you read that right, us daredevils went tubing after dark. It was SO much fun!

Elaine and Kristi

Susan, Elaine, Kristi, Cassie and Emily

We did lots of celebrating while we were there. We had Dale's famous chili to celebrate my birthday, Gigi and Pops took us out to dinner to celebrate their anniversary, and we had a tremendous taco bar to celebrate Cassie's birthday.

We had lots of wonderful food, lots of fun, and so many memories. Family truly is the best, and so glad that we got to spend this time together.

 

Reflection

We have some other light hearted posts to update on funny Christmas stories, travels, and day to day life. But I am feeling compelled to write about what's on my mind right now.

When asked "Did you get what you asked for Christmas?" I feel as though I have become so harsh and cynical. My immediate response is "We had a great Christmas with our families, and our boys are healthy (relatively) - it was great!" While inside, all I can think is "No, I did not get what I wanted. I want two physically healthy boys. I don't Isaac to endure surgery, I don't want him to struggle to gain weight. I don't want Eli to have to ask if food has soy, egg, or dairy in it. I don't want to have to make sure that I am not putting more emphasis on Isaac's condition and Eli feeling left out. I don't want to have to advocate to health care providers to the extent that I am physically sick on my children's behalves. But, these are all things we do. I could go on, and on, and on with stories of the last year (mainly), but in the end - we are where we are. We are here for a reason. Ryan and I may not know the answer as to why we are here, but God does. And, I firmly know that we are here in this place, at this time for a distinct purpose. And, while I have spent my fair share of time wallowing and questioning recently, I was reading a friend from high school's blog, and it hit me squarely between the eyes. All of the time that I am spending questioning, asking why, and fearing the future - I am forgetting the most important thing of all. Where is my praise to God for blessing us with these two HILARIOUS, precious, innocent, loving, caring, boys? I was quickly reminded that I need to accept the blessings daily that God has given, and be present at all times with Ryan, Isaac & Eli. Never take a day for granted, live in the moment - don't wish them away.

Happy New Year!

Halloween - Part 1

The boys had a fabulous Halloween. We'll post part 2 later, when we have some of the video links and pictures uploaded from them trick or treating. For now - watch the boys and their over-zealousness at passing out candy. I think we have a couple of future ballpark vendors on our hands!

We hope you all had a Happy Halloween! 

- Ryan, Kristi, Isaac & Eli

Kids say the 'darndest' things..

We have now entered into a phase I think we all enjoy - listening to kids say the silliest of things.

1. We have multiple therapists that come into our home throughout the week. It just so happens that our OT, Nicole has a student that comes with her, and this student's name is Patience. After dinner one night last week, the boys were being quite demanding - "water, water, water, water, water, water, water..... music, music, music, music, music, music.... louder, louder, louder, louder, louder....." AYE. To which I respond sternly to.. "Eli, where is your patience." Eli responds with, "She went bye-bye with Nicole."

2. Ryan and I, the coffee aficionados that we are, often stop at our local coffee shop. The boys know that when we turn left out of our neighborhood, we are more than likely going to get coffee on our way somewhere. Sometimes they ask us to order them coffee (to which, of COURSE, we say okay. And we return with a cup of ice for them). Sometimes, they throw a fit and say "NO COFFEE." as in, "no soup for you."

3. Isaac and Eli can spot the McDonalds arches from miles away. We know this because all of the sudden we start hearing, "Fwench fwies, fwench fwies, fwench fwies..."

4. If Eli finds a speck of ANYTHING on the carpet, it is promptly brought over to me, and he says, "Mommy needs to vacuum," as he nods his head, as if he's commanding me to do so. Which, is odd, because he hates the vacuum. When the vacuum cleaner comes out, he grabs on to Isaac for dear life, because Isaac does not exhibit fear of the vacuum. It's funny and sweet that Eli tries to rescue Isaac from being sucked up.

5. Eli likes to clean (see #4), or at least he likes for things to be clean. Lately, he has been dumping food off of his plate and high chair, because the normal punishment is to clean up. Last night, I trumped him. He dumped, and instead of making him clean, or turning him away from the table, he had to sit in his chair, and watch me clean it up. You would have thought this was the world's worst punishment.

6. If Ryan or I have on running shorts or if either of us looks like we might or have already exercised, we are greeted with a "Mommy go running?" or "Daddy yucky. Take a shower."

7. An oldie, but one of my FAVORITES. Eli had a hard time saying "ear." It always came out sounding like "ew" (rhymed w/ goo). That was super cute. But then, when you asked him how many, he would look at you and innocently say "two ews." Makes me melt! He grew out of this probably at about 20-22 months old.

8.  Isaac FINALLY has started to show some signs of hunger (this has been something we have struggled with for a LONG time), anyway... instead of saying that he is hungry, he asks, "See somfing in da fwidge? Somfing ewse?" or if we are not at home, "Daddy? Cwackers in diapah bag?"

The Decision of a Lifetime

Very soon (as in probably within the next 10-14 days), Kristi and I will be meeting with the doctors and neurosurgeons and other pertinent people to have a candid discussion of surgery possibilities for Isaac.  We have received opinions from doctors from a Harvard study group and from Boston Children's.    Basically it boils down to the following options:

1) To do a complex procedure to decompress his spinal cord, then stabilize the cord and untether the cord from his pelvic bone.  All of the details of this surgery will be discussed but as you can probably gather, it will involve some risk.
2) To only untether his spinal cord and continue the waiting game
3) To opt to not do any surgery

There are so many questions Kristi and I have about these possibilities that it would be impossible to address them all here.  Suffice it to say, we are worried, anxious, and any other synonym for the fear of the unknown.  Isaac has come so far, yet we understand the need to continue that progression.  However, we struggle with the concept that this progress (and continued progress) comes with risks.  Essentially we face the following questions.

1) Will doing surgery give Isaac a better chance to function normally (whatever normal may be) and does that better chance outweigh the risks of what would most likely be a complex surgery?
2) Does this surgery need to be done in order to prevent further injury?  And if so, again, does the surgeries risk trump the damage that could be done without it?
3) And of course, what are the risks to Isaac with this procedure?

It is hard for us to think about all these things as we continue to see our little boy progress and be such a brave little soul with all the different therapists and appts he routinely has to go to.  We also struggle knowing that we have to make this decision for him, that he is unable to make this decision on his own.  I so very wish we could just look at him and go, “what do you want to do buddy?”  But, that is not our reality.  We will get the best information possible and make the best decision possible.  Scary.

Kristi and I continue to talk regularly about this upcoming decision and what we think is best for Isaac.  It keeps us up at night, it invades our thoughts at random moments, and at times, makes us sad to think of what could have been.  But, with each new conversation, each new piece of advice, and each new hurdle conquered (by us and Isaac) we gain strength.  Our little boy, who looks and plays like almost any other toddler (except not as tall!) is a medical miracle already, and we are hopeful for a few more.  We will trust in our doctors, our family, and ourselves, and of course, in Him.

On a personal note, I have tried over the course of almost 3 years (from the time we knew he had an “issue” until now) to always stay positive and not really think about the “what if” scenarios.  I find this more and more difficult with each passing day.  It has been weighing on my mind for quite some time now that Kristi and I have to be the voice for Isaac.  We have to think about how this upcoming decision will affect him 10 or even 20 years down the road.  We have to try and make predictions on less than reliable stats (as Isaac’s case is so incredibly rare).   It is hard to see recommendations from world class doctors on the East Coast continually say, “his case is much more severe or complex than our closest examples”.  I think about my love of sports and how I can best portray that to him.  And in those moments, when I know he might not be able to play soccer or golf, or baseball, it does unfortunately make me sad.  But, I also see how he lights up when solving puzzles or problems.  And of course, he LOVES music.  And so, we will go into this next round of meetings with an open mind,  hopeful that our little boy will continue to prove us and doctors wrong.  We love our boys so much and Kristi and I continue to be a stronger couple through all of this.

Please say a few prayers as doctors come up with the final recommendations (we know, this has been a long waiting process).  I think Kristi and I would also ask that you say a prayer for Elias as well.  He has been so sweet through all of these things (don't worry, they both do act like typical 2 year olds too!), and he sometimes has to take a backseat to Isaac.  Eli is the best little brother Isaac could have ever been blessed with.  Thank you to everyone for all your support and help, it means the world to Kristi and me.