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.

Approaching the Cliff (New Info on Isaac)

Dear Family, Friends, and Followers,

As many people have been inquiring, Kristi and I felt it was important to post the most up-to-date information we have regarding Isaac's condition and the status of his medical needs.  As many are aware, Isaac has approached the need for surgery many times, and each time we have been told that it isn't necessary at that time.  However, this has changed with the last appointment with Dr. S.  He, along with Dr. I (neurosurgeon) are recommending surgery for Isaac this winter.  They have consulted for quite some time and have to this conclusion for 3 main reasons.

1)  Isaac's spine is not compressed according to all images taken, but is at risk for becoming compressed here in the near future.  It is important to prevent that from happening in order to keep whatever feeling and mobility he may have in his hips, legs, and feet intact.
2)  The spinal cord needs to be untethered from his tail bone
3)  While not emergent, doing this surgery may allow him a better chance at growing (length and weight)

The surgery they are recommending is following:

They will alleviate the probability for his spinal cord to become decompressed by chipping away the spinal column (the bone) to allow the spinal  cord to float back to a more straight line or fluid position, rather than have to navigate through the curve it currently has.  Due to the procedure for decompression, it makes the spinal column grossly unstable, thus necessitating a stabilization surgery for his spinal column through fusing bones, with the possibility of rods as well.  Lastly, they will untether is spinal cord from his tailbone.  Obviously there are many details to this surgery we have not gone over with the doctors.  Needless to say, it will be a lengthy and complicated surgery (though the untethering procedure is quite common - although there could be some complications here for Isaac, as he has some bone spurs on his tail bone that it could re-adhere to).  We will cross that bridge as a surgery date approaches.  In meantime, we have asked for a second opinion on this plan and Dr. S said the following to our request "I think that is a great idea, but I have only one requirement, that whomever I send you to has to be smarter than me".  That made us smile, Dr. S has been pretty unbelievable and we continue to be thankful for all the time and thought he has put into Isaac's case.

After a lengthy discussion with Dr. S, it was determined that instead of sending us directly for another consult with just one other doctor, since Isaac's spinal issues are so rare, he would create a presentation with all of Isaac's MRI's, CT's, and XRays, as well as a write up of his findings. He offered to then send it off to a study group of Dr's that he communicates with regularly from his time at Harvard. This is a huge blessing! We are going to essentially get 11 more sets of eyes to 'look' at Isaac. We think this should get sent out this week.

So, where do we go from here, while we're waiting on all of the other reviews?  Well, the first stop was to see another neurologist, oddly ANOTHER Dr. S.  We have now seen Dr. S from orthopedics (for his club foot), Dr. S from orthopedics (for his spine), used to see Dr. S as a pediatrician, and now are at another Dr. S from neurology!

Anyway, we went to see Dr. S (the new one) in regards to Isaac's motor function and his ability to use his legs.  We learned that Isaac has more strength in his legs than previously thought, that he can detect hot and cold on his legs (he got 8/10 questions right in regards to hot and cold), and he can command his legs to do things when asked.  Now, does he have much feeling in those legs?  No.  Have his muscles developed much in his legs?  No.  Does he have the ability to stand unassisted?  No.  Is that possible in the future?  N......Maybe?  :)  It seems as though Dr. S believes that Isaac might stand/walk with bracing unassisted.  Where does this put us?  We have no idea.  However, Dr. S is hesitant to recommend surgery as there are certainly risks for Isaac losing whatever gains he has made.  But again, Dr. S also said obviously there are benefits to the surgery as well.

Unfortunately, we are faced with a risk versus reward situation in regards to surgery.  It is very difficult to say whether or not surgery will help or prevent further problems.  SOOOOOOO, we're waiting patiently for Isaac's presentation to be reviewed by the other doctors, we know options are going to come back from them, essentially there are three options we could be given: 1)  Agree with Dr. S and Dr. I and recommend the surgery, 2) Disagree and say surgery is not needed, or 3) Say they need to physically see Isaac to make those determinations, in which case we will take him to Boston.

Whew!  That is where we are at.  Tentatively thinking of a winter surgery while we wait for all these docs to consult and come to some conclusion on what to do.

I am sure this post is longwinded and confusing.  It is tough to type as my mind races ahead to another thought or what-if scenario.  Feel free to ask Kristi or me if I didn't do a very good job explaining what is going on.  Thank you to everyone for all the kind words of encouragement and all the prayers that are said for Isaac and our family.  We sincerely appreciate each and every one of them.  We often find ourselves totally forgetting that Isaac has some serious hurdles ahead of him, and forgetting about that is really quite good for us.  We will continue to advocate on his behalf and we hope he continues to show the amazing resilence he has already shown. God has been faithful to us so far, and we strongly believe he will be in the future!

To Twinfinity and Beyond!!!!!!!!!

Love

Medical Updates for Isaac

On Wednesday, we took Isaac to the Spina Bifida Clinic at Children's Mercy Hospital. The clinic is a great place to be able to see multiple doctors all in one setting and it was nice to have all of his providers except for his Orthopedist that is following his spine there to consult with. To give a quick overview, we saw his Neurosurgeon, Orthopedist (for his club foot), Urology, Physical Therapy, Rehab, Nutritionist and a general Pediatrician. The only downside is that his appointment lasted almost 4 hours. That is a long time to try and keep Isaac happy!

From his orthopedist, he will continue to wear his foot brace for almost another year to continue the correction of his right club foot. It will not be essential that he is wearing the brace every night though it will be used more often than not. The explanation given to us was that we hypothetically could get away with bracing every other night, but with a child Isaac's age, it is hard to explain to them why they have to wear their brace some nights, and not others. So in theory, if Isaac isn't protesting, then it would likely be easiest on him, if we just keep the routine the same, and have him wear it nightly. And if we skip a night here and there, no big deal.

From his neurosurgeon, Isaac will continue to be evaluated by Dr. I (who will continue to consult with Dr. S). Our biggest concern at this point is Isaac's tethered cord, from a neurological standpoint. Our questions centered around the risks vs. benefits of the surgery to untether Isaac's cord. Initially, this procedure was to be done in tandem with Isaac's spinal stabilization surgery. As of Isaac's last appointment with Dr. S, the spinal stabilization surgery was tabled until he has a CT and MRI to reevaluate to make sure that the procedure is necessary. We were afraid that his tethered cord would not be addressed, which is why we had these questions. In talking to Dr. I, we just asked what the risks were to not untether the cord. The answer to that is that it is highly likely that his legs and lower trunk function would have a significant chance and likelihood of getting worse, if we do not untether the cord. A better explanation of this and visualization is that imagine as he gets taller, and his spinal cord remains attached at the bottom, it will strain and pressure will be put on it, especially where his spinal column narrows.

However, untethering the cord will be more of a preventative measure. Isaac's legs likely will not gain more strength or use because of untethering, but we would be more or less preventing them from deteriorating any further, and preserving the use that he does have in his legs and lower trunk (including, but not limited to bowel and bladder function).  We can continue to work on gaining muscle in his legs through intensive physical therapy, and working with him in his stander, which we will continue to do.

And finally, the update from urology. Isaac has a bladder that is thicker than usual and a high amount of pressure within his bladder, and could possibly be classified as a Neurogenic Bladder.

In addition the muscles that should work together to allow the bladder to empty are not working together properly. This also increases the pressure in his bladder and does put him at risk of urine backing up into his kidneys, and could in turn cause kidney damage. Dr. G was unsure what the long range implications of these developments will be except that it will range from his muscles learning to work together, to maybe, to the other end of the spectrum which would be a catheter being needed. In the short term, Isaac will start a new medication that will hopefully help his bladder become a little thinner and more elastic. If this happens, it should hold more urine and might allow things to start working together a little more. We shall see. If a catheter is needed, and it is quite common amongst individuals with spinal defects, we will do all of that explaining at that time.

Another visitor that we had was Physical Therapy and Rehab. They mainly wanted to get a baseline of what Isaac can do now, what muscle groups he uses, and note any that he does not. They watched all of the way down to his ankles, and noted that he does move his ankles on his own, not just reflexively. They asked us if we had thought about a wheelchair for Isaac as he gets older. This might be a shock to some of you - but yes, we have had several very indepth conversations with some of Isaac's First Steps therapists, and have begun to cross that bridge mentally. I won't lie. It was a tough bridge to begin to cross. We first started talking about it back in January. I (Kristi) remember a very cold day, spending much of my lunch talking to one of Isaacs therapists on the phone, and working through some of my emotion around it. Too bad she couldn't bill my insurance for that call!!! Since then, Ryan and I have had a few other conversations about it, but hadn't put that much thought into it. Fast forward to this appointment with PT & Rehab, and they asked if we wanted to see a kids wheelchair. They mentioned that it would be a bit big for Isaac, but would give us a good idea as to what is in our future. We said sure, to go ahead and bring it down to our room. As soon as they brought it in, Isaac was chanting "Go, Go, Go, Go, Go..." Very similar to Finding Nemo, when all of the birds are going "Bite, bite, bite, bite, bite!!!" He clearly wanted to sit in it, so we buckled him in. It was almost like it was second nature to him, and his hands reached out for the wheels, and he immediately started maneuvering the chair. The look on his face was priceless. He was SO proud that he could make it go on his own. He even figured out how to turn circles, and go forwards and backwards. All within a matter of about 10 or 15 minutes.

Let me be completely honest. Through all of this - sure there are days and moments that stink. But let me also tell you, that in the instant that I saw the look on Isaac's face, it sure said so many words to me. It is hard to explain, but I really feel like what God taught me on Wednesday was that this is SO not about me!!! This is about Isaac. And to Isaac - that chair is freedom and independence. Isaac needs us to be happy. To be upbeat and to be his biggest cheerleaders. And Eli needs us to set an example for him. We need to be able to lean on one another, so that we can be examples to our boys on how to deal with adversity and disappointment and be their biggest advocates.

Get Off Your Knees - Inspirational Video

I have been thinking about this video for the past two days. One of my college friends shared it with me on Facebook, saying he thought of us when he came across it. What he may not of known is what a chord it would strike within both Ryan and I! So, thank you D & K - you know who you are!

The way that John talks about himself and why he is the way he is - is one of the things that has stuck with me. We spent so much time and effort trying to 'classify' Isaac's diagnosis. While it is very important to know if his condition is genetic (which it isn't), so we'll know about risks for any future children, and for Isaac's children, it isn't entirely important to know why otherwise. Perhaps for research, or prevention in the future - sure, but the way John puts it in the video nails it. For Isaac, it does not matter why or how he became the way he is. He will never race the 100m dash in a track meet, but that doesn't matter. What matters is Isaac's attitude and outlook on life, the way he is. Which, I would have to say, he is figuring out how to cope and how to succeed. It seems that every time a doctor tells us he won't be able to do something, he shows us he will progress at his own speed, and succeed at whatever he puts his mind to.

The other aspect of the video that really hit home for me is when John's dad talks about how he and his wife processed the news. And the gamut of feelings and emotions that they went through. I've never felt that validated in my feelings. There are times that I have a brief moment where I am mournful over things. For instance, the other night I was holding Isaac up so he was at Eli's level, standing so they could hug each other good night. Until Isaac has more strength, I'll never get to see them run up to each other and give hugs. I took my brief moment, but was brought right back to where my mind usually chooses to reside - if Isaac can deal with this on a daily basis, then surely I can too.

The video is a bit on the long side, but if you have the time to watch at least some of it -- I truly think you'll come away inspired!

Kristi

Watch Get Off Your Knees on PBS. See more from WMHT Specials.

 

Isaac for President

Isaac thinks he'd be a great candidate for the GOP, as his great-grandpa Krehbiel told him, but that isn't what this is about! Plus, I am sure Ryan would like to continue to talk to him about the benefits of being more aligned with the middle (or the left. GASP), but I digress.

While Ryan posted a week or two ago about our visit to see Dr. S, and the fact that when we flat out asked "is Isaac going to walk," and were answered with, "not without significant support," Isaac has been laughing in the face of medical science. I have so many different emotions when it comes to this.

More Dancing & Laughing :)

We have more videos of the boys, thanks to their Great Aunt Lisa for always having her iPhone on hand!

Eli getting down, but Isaac shows off his breakdancing skills!

Part of our normal bedtime routine is to put Eli in Isaac's crib, and they'll give each other hugs and kisses goodnight. Last night, they got to laughing so hard! We aren't sure what was so funny, but they sure were laughing hard with each other. And don't worry, they are normal kids, they fight over toys and everything else too. We just don't record that! :P