I spoke with Elijah's neurologist yesterday about his MRI results. The great news is that his brain looks perfect! I knew in my heart that there wouldn't be anything wrong with his smart, precious little head, so this news didn't come as a surprise. I was still relieved to hear it, though.
The other, not so desirable, news is that Elijah has a tethered spinal cord. We have always known that this could be a possibility because of his sacral dimple. The ultrasound that was done a few days after birth was normal, but obviously an MRI is a much more detailed test and it showed that it is indeed tethered.
What this means is that the end of Elijah's spinal cord is tightly fixed so there is not the normal movement on the lower end of it. There is something "binding" the spinal cord down, and therefore, it is "tethered." Dr. J claimed to not be enough of an expert to be giving me information on just how tethered Elijah's spinal cord is or where we go from here, so he is passing his scans onto a neurosurgeon. He did say that surgery to release the tether will likely be a reality for us. From the way it sounds, it's just as "easy" as that. Surgery would release the tether and the spinal cord wouldn't be constricted anymore.
Dr. J told me that it is a very good thing we are catching this now. Finding tethered cords later in life can be very bad, painful, stunting. So, thank God we went through with this test (especially since I was seriously thinking about not going through with it).
Now we just wait for the surgeon to call us and go from there. Maybe this news should have me really upset, but it doesn't. This could explain A LOT about our little boy. This could be the reason for the non-walking, and even some of his sensory issues. We are hopeful that this surgery will help Elijah out tremendously!
Dr. J told me that the neurosurgeon he is referring us to is the nation's BEST at fixing tethered cords. He claims this man can "work magic," and that he would trust him doing surgery on his own children. Again, we feel blessed to have so many amazing people caring for our little munchkin.
Which gets me thinking. How many people ARE caring for Elijah? We continue to add people to the list.
General pediatrician
Cardiologist
Pulmonologist
Urologist
Geneticist
ENT doc
Orthotist
Neurologist
Heart surgeon
Neuro surgeon
2 speech therapists
2 physical therapists
1 occupational therapist
p.s. Dan and I had a fabulous anniversary dinner last night. Thankfully my body held off getting sick till this morning! And thankfully I have leftovers!
11 comments:
You missed the two most important caregivers Elijah has...
Mommy and Daddy!!!
Wow... that is new news. Keep us updated. You know that Elijah is awesome and that this could explain like you said, many things. God has amazing things in store for Elijah!
So sorry about another surgery, that stinks. I'm so glad you've discovered this early, I know it is progressive and can have serious consequences if left untreated.
Any thoughts on when the surgery might be?
Megan, the tethered cord could possibly be what's held Elijah back from walking. It's a bummer you have that diagnosis to deal with, but it's good that it's a correctable problem.
And I hope you get better soon!
I am so sorry you all are going through this. I am also grateful you went through with the MRI. This is going to turn out positive. After Will, Harrison's brother, had his MRI at 3 Dr. J sent us to a Neurosurgeon too. He said he was the best and he would send his own kids. You are in great hands with Dr. J and his referrals. Our Neurosurgeon was Dr. Nagib, who we absolutely love. He helped Will tremendously when he performed his base brain surgery. We were told he may never ride a bike w/o training wheels. He did, before his friends...he was 4 and a half. Now he plays baseball... he is 8. Good luck, keep your heads high, and get some sleep. Elijah is going to get what he needs from this surgery. This is the little help he needs to get those muscles and coordination going for him. I will pray for this new journey.
Tiffany
wow, what a ride you have had. I'm so proud of you guys! Get better soon and big hugs to the boys. luv, Kendis
Finding the tethered cords is a good thing and I am so glad they caught it now, Like you said this has explained alot and just look after he has surgery he will do so much better.
I hope you are feeling better and I am gload you both had a nice dinner.
I agree with the first comment about forgetting the 2 most important caregivers - Mommy & Daddy!
Its good that you found out about this now & not later when it could cause more problems.
Hoping you're feeling better & that you enjoy(ed) those leftovers!
Give that munchkin big hugs from us!
oh...Happy anniversary!
I hope you don't have the swine flu. Maybe you should wear a mask!
Yikes about his spine. Isaac has the sacral dimple also, but I guess he's not tethered because we've had it ultrasounded and MRI'd. Sorry that this is another thing to add to your plate...and another awesome doc to put on your list. You guys are amazing. Give that cutie pie a big hug for me!!!
kathy
Elijah should have the surgery as soon as possible if it helps his spinal problem, I wish him well.
I agree with the Lyons Family's comment, you and Dan are the two most important caregivers Elijah has.
Love and hugs to you all xoxo
If you want to talk to some other parents who've had this done, I can put you in touch with a couple of my dearest friends. They're daughter is doing wonderfully! BTW, who is the surgeon?
Thinking good thoughts for you all.
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