Until the next update -
Tuesday, January 15, 2013
Surgery Update #1
Nothing to update other than surgery is going as expected. The Operating Room nurse called us to update, and we asked if they could let us know what part of the procedure was taking place. She responded that from her view, there are is a camera over the field, but the doctors heads were in the way... She did offer to interrupt to find out where they were in the procedure, but we quickly said that wasn't necessary. She did offer to have more of an update for the next call. :) We're all in good spirits, and we certainly appreciate all of your thoughts and prayers!
Until the next update -
Until the next update -
Pre-Surgery Update
So far, as surgery goes - Isaac got a dose of Versed at about 7:30, and went back to the OR at about 7:45, so we are about 45 minutes to an hour behind schedule. He went back with a smile. Hopefully another update in a couple of hours or so.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Phillipians 4:6-7
Monday, January 14, 2013
Say A Quick Prayer
Thank you to everyone who has sent us a kind note, email, text, phone call, etc. We really appreciate all of the support from everyone.
Isaac's surgery will start early Tuesday morning, and we're hopeful that he'll be out of surgery by mid to late afternoon. We do plan on keeping the blog updated as we receive information, so feel free to check back for updates. We also plan on keeping our gathering at the hospital tomorrow small with our families.
Again, thanks, we will update as soon as we know the outcome or have any other pertinent details.
All we ask for everyone who knows about Isaac to say a quick prayer early Tuesday morning for him to be monitored easily, respond well to surgery, and to lift up his doctors and nurses to take care of Iz to the best of their ability.
Love to everyone -
Isaac's surgery will start early Tuesday morning, and we're hopeful that he'll be out of surgery by mid to late afternoon. We do plan on keeping the blog updated as we receive information, so feel free to check back for updates. We also plan on keeping our gathering at the hospital tomorrow small with our families.
Again, thanks, we will update as soon as we know the outcome or have any other pertinent details.
All we ask for everyone who knows about Isaac to say a quick prayer early Tuesday morning for him to be monitored easily, respond well to surgery, and to lift up his doctors and nurses to take care of Iz to the best of their ability.
Love to everyone -
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.
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.
Friday, January 11, 2013
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 3rd birthday and these next few months are hopefully just a speedbump until that party.
Tuesday, January 1, 2013
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."
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!
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.
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."
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| First Trip to the Mountains |
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| Snow Angel Eli |
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| Flying with Gigi! |
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| Isaac - much happier inside! |
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| Elaine and Kristi |
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| 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.
Monday, December 31, 2012
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!
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!
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