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

The Come Back Kid

Isaac wants everyone to know that he heard all of the conversations today about his legs. He just wants everyone to know he's working on it... here's the proof!

This video doesn't quite show exactly what he had been doing as he was going up the stairs. Of course, once Aunt Lisa started taping him, the performance was off! He would pull himself ALMOST all the way up, and then put his legs back down, stand briefly on his own to reposition his hands, and then finish going the rest of the way up the stairs. He keeps us smiling, hoping and believing that he can and will do whatever he puts his mind to.

Finally, A Post from Dad (and about Isaac's condition)

Well, it has been a long time since I have posted something as Kristi has been the real trooper when it comes to updating the blog and getting pictures to facebook and such. But, I just wanted to take a moment to say thank you to all our friends and family who continue to show us enormous amounts of love and support. It really has been amazing.

So, today (Jan 23rd, 2012) Isaac was back at CMH for a long (and I mean LONG) appointment with his spine doctor, Dr. S. After almost 4 hrs, here is what we can tell you about Isaac and the problems related to his spine.

1. His spine is stable

2. The areas in his spine that are narrowed (see one of our earlier posts if you need to see a picture of his spine) are also stable. (Spine Pictures w/ explanation)

3. He has movement in his legs, and feeling all the way into his toes.

4. He continues to have very little muscle development in his legs which will continue to decrease his chances at walking on his own. We work with him on a very regular basis in his stander and on pulling himself to a standing position.

5. His spine is still extremely narrow in the middle of his back and this most likely means few signals are making it to his legs (though some are). See the CT Myelogram Post explaining this.

6. There is NO surgery scheduled at this point. After a long consultation with his doctor, it has been determined that there is no need to do surgery at this point (but that is still certainly a possibility later this year). Isaac will undergo further CT scans and MRI's this May to determine more clearly if surgery will be necessary.

So, here is the best way I can summarize what we learned today. Isaac is progressing at his own rate, and his spine continues to be stable. Unfortunately, after asking the Dr. point blank about his chances for walking, it is pretty clear his odds are extremely long on walking on his own, unassisted. His doctor told us that he believes Isaac might be able to walk with braces on legs, but we obviously will not know that for years to come. For now, we are content knowing he is safe, happy, and cognitively is doing very well.

As Isaac's dad, and without sounding too snobby or whatever the word would be, this diagnosis is not a cause for sadness or disappointment. Kristi and I are thankful every single day for Isaac being with us, especially considering the initial prognosis we were given. Isaac is a fighter, he has proven that over and over again. He amazes us on an almost daily basis and if the kid is meant to walk, he will. If he isn't, then I believe (and I know Kristi does too) that it was meant to be that way. Isaac will still find a way to do what he wants. God has a funny way sometimes of sending signals to us and I think he is doing some amazing work through Isaac. We continue to trust in Him and in our doctors and are forever optimistic. Anyway, I will jump off my soapbox, I just really needed to express that we will not feel sorry for ourselves and that Isaac is the best son we could have asked for (and Eli is tied with him!!).

Thanks for all the thoughts and prayers, those obviously are working!

First Wagon Ride of 2012

We barely got our first wagon ride in for this year! I had gone on a run about an hour before, and it was nearly 70 degrees outside. I went ahead and fed the boys their afternoon snack, and Ryan got out on his bike for a quick ride. In that time, the temperature had dropped 15 degrees and the sun started to go down... so it was not as warm as I thought it was! So we went ahead and bundled up the boys, and away we went!