Holden had an MRI of the spine yesterday, and as most of you know, he did awesome! He was under general anesthesia, and he woke up a little groggy (umm... of course!), but other than that, he was fine. No vomiting, no irritability, no whining. A few tears were shed when his IV was taken out, and that was it. Holden tends to get over things very quickly. Knowing that Holden tolerated the anesthesia so well has me feeling much better about all of the orthopedic surgeries he'll need in the future.
So results of the MRI: We still don't have an official, concrete diagnosis for Holden. The neurosurgeon called it a primary spinal cord anomaly (meaning, it happened in utero, and there's something wrong with his spinal cord) and that's about it. It's not sacral agenesis because his sacrum is there, and he's not missing any vertebrae. It's not spina bifida, because with his level of paralysis, it would have been a meningocele or myelomeningocele repaired at birth, and that wasn't the case. However, the neurosurgeon did say he has "a bit of spina bifida occulta" so, essentially defective closure of the vertebrae without spinal cord protrusion. This matters because the condition can cause a tethered spinal cord as a child grows, so that's something we'll have to watch out for. However, most people with spina bifida occulta don't even realize they have it until they have symptoms. They don't have decreased sensation and paralysis like Holden has.
The neurosurgeon chalked this up to the "spinal cord abnormality that affects the nerves extending to his lower extremities". He then went on to say that "it's really hard to get a good look at the spinal cord in young, small children" So, he wants to repeat the MRI in six months.
Hooray! We had such a fun day we are super pumped to do this again! He also ordered x-rays of the spine, hips, and knees on our way out. He called on our drive home to say that, "he does have a slight abnormality of the sacrum" Ok, so... a touch of sacral agenesis, a touch of spina bifida occulta, and a big dose of some other spinal cord abnormality, is that what we're saying here? The neurosurgeon was super nice, but he didn't spend a whole lot of time with us. I'm in the process of getting all of the doctor's visit notes and imaging reports, because I feel like there could easily be pieces of the puzzle we're missing that the docs dictated on but failed to mention to us.
The neurosurgeon was very positive in what he thinks Holden will be able to do in terms of his mobility. He said he knows a child who is missing her pelvis and can walk. He went on to say, "I don't even know how that's possible."
I don't either, Mr. Neurosurgeon, and if you're a neurosurgeon and you don't know, let's just chalk that one up to God because that's crazycakes!
I'm still sitting here thinking, "really......??? no pelvis??? I can't even picture that. How are the legs attached..... just tendons and ligaments..... attached to what......??? I could spend all day pondering this, or I could finish this blog post.....
Mr. Neurosurgeon wanted to know what Mr. Orthopedic Surgeon's plans were, and I said that he was being rather conservative until he saw the results of the MRI of the spine. Mr. Neurosurgeon went on to say, "tell Ortho to be very aggressive, because I think there's a lot this kid will be able to do, and it will boost his self-esteem to have feet and knees that look like other kids either way."
Ok then; Will do. We know that Ortho wants to surgically correct Holden's clubbed feet first, and then, if we think he will stand and maybe walk, they'll fix his knee contractures. We see Ortho again in mid-July. At that point, we'll have 6 weeks of PT under our belts, and I think the plans for correcting Holden's feet will be underway. I'm not excited about putting him through pain and suffering, but it has to be done to help with his mobility, and hey, this is where decreased sensation to the lower extremities finally has an upside... less surgical pain.
Holden has also had a renal and bladder ultrasound. His kidneys look great! His residual urine volume in his bladder is super small, as in, a completely normal amount, so we're not worried about urinary retention and reflux into the kidneys. Also....................... drumroll please.............................
At 2.5 years old, this is incredibly good for a boy. As in, my little boy who has partial paralysis and decreased sensation in his lower extremities and was recently adopted, is more advanced than most typically developing little boys. Way to go, Holden! You amaze us every day!
We are essentially cleared from urology unless we have problems or a year has gone by and potty-training isn't complete. At that point, there's another test called the VCUG (voiding cystourethrogram) that they will do. I liked how the urologist put it. He said, "At this point, I have no reason to believe that there's anything wrong with his bladder or ability to be continent, and if it was my child, I wouldn't put him through this test." Obviously, at 3.5 years old, if potty training isn't complete, then we'll give him a call and see what's up.
Honestly, I was not prepared for this at all. Chris and I kind of just assumed that we would be using alternative methods to help Holden achieve continence. So far, that's not the case at all. If it is the case in the future, I probably won't be sharing that with you here :)
I've probably already shared too much on this subject and one day Holden is going to read this and go, "Mooooo-oooommmmm!"
Sorry, baby, Mommy is just so proud that you're going pee-pee on the potty!
Let me wrap up the most boring blog post ever by saying that I plan on vomiblogging very soon (vomiting up all the blog posts I've been saving up in my head) so you can hear all about Holden's various adorable escapades.
I'll leave you with this note to show you how amazing our little boy is. In the 7 weeks that Holden has been home, he has been to 7 doctors and/or OT appointments, had 3 shots, 1 lab draw, 1 in/out cath, 1 renal ultrasound, 5 x-rays, and one MRI under anesthesia, and despite all of that, he has been the most joyful, positive, fun kid you will ever meet. This little guy never ceases to amaze me. His joy is limitless, his strength is incredible, and his love is priceless.
As I told a friend I got to see at MUSC yesterday, "I think everyone needs a Holden in their lives." Hopefully, as I start blogging more, you'll all get to experience a little bit of Holden in your lives and feel some of the joy that Chris and I feel every day.
So results of the MRI: We still don't have an official, concrete diagnosis for Holden. The neurosurgeon called it a primary spinal cord anomaly (meaning, it happened in utero, and there's something wrong with his spinal cord) and that's about it. It's not sacral agenesis because his sacrum is there, and he's not missing any vertebrae. It's not spina bifida, because with his level of paralysis, it would have been a meningocele or myelomeningocele repaired at birth, and that wasn't the case. However, the neurosurgeon did say he has "a bit of spina bifida occulta" so, essentially defective closure of the vertebrae without spinal cord protrusion. This matters because the condition can cause a tethered spinal cord as a child grows, so that's something we'll have to watch out for. However, most people with spina bifida occulta don't even realize they have it until they have symptoms. They don't have decreased sensation and paralysis like Holden has.
The neurosurgeon chalked this up to the "spinal cord abnormality that affects the nerves extending to his lower extremities". He then went on to say that "it's really hard to get a good look at the spinal cord in young, small children" So, he wants to repeat the MRI in six months.
Hooray! We had such a fun day we are super pumped to do this again! He also ordered x-rays of the spine, hips, and knees on our way out. He called on our drive home to say that, "he does have a slight abnormality of the sacrum" Ok, so... a touch of sacral agenesis, a touch of spina bifida occulta, and a big dose of some other spinal cord abnormality, is that what we're saying here? The neurosurgeon was super nice, but he didn't spend a whole lot of time with us. I'm in the process of getting all of the doctor's visit notes and imaging reports, because I feel like there could easily be pieces of the puzzle we're missing that the docs dictated on but failed to mention to us.
The neurosurgeon was very positive in what he thinks Holden will be able to do in terms of his mobility. He said he knows a child who is missing her pelvis and can walk. He went on to say, "I don't even know how that's possible."
I don't either, Mr. Neurosurgeon, and if you're a neurosurgeon and you don't know, let's just chalk that one up to God because that's crazycakes!
I'm still sitting here thinking, "really......??? no pelvis??? I can't even picture that. How are the legs attached..... just tendons and ligaments..... attached to what......??? I could spend all day pondering this, or I could finish this blog post.....
Mr. Neurosurgeon wanted to know what Mr. Orthopedic Surgeon's plans were, and I said that he was being rather conservative until he saw the results of the MRI of the spine. Mr. Neurosurgeon went on to say, "tell Ortho to be very aggressive, because I think there's a lot this kid will be able to do, and it will boost his self-esteem to have feet and knees that look like other kids either way."
Ok then; Will do. We know that Ortho wants to surgically correct Holden's clubbed feet first, and then, if we think he will stand and maybe walk, they'll fix his knee contractures. We see Ortho again in mid-July. At that point, we'll have 6 weeks of PT under our belts, and I think the plans for correcting Holden's feet will be underway. I'm not excited about putting him through pain and suffering, but it has to be done to help with his mobility, and hey, this is where decreased sensation to the lower extremities finally has an upside... less surgical pain.
Holden has also had a renal and bladder ultrasound. His kidneys look great! His residual urine volume in his bladder is super small, as in, a completely normal amount, so we're not worried about urinary retention and reflux into the kidneys. Also....................... drumroll please.............................
Holden has been potty-training!
At 2.5 years old, this is incredibly good for a boy. As in, my little boy who has partial paralysis and decreased sensation in his lower extremities and was recently adopted, is more advanced than most typically developing little boys. Way to go, Holden! You amaze us every day!
We are essentially cleared from urology unless we have problems or a year has gone by and potty-training isn't complete. At that point, there's another test called the VCUG (voiding cystourethrogram) that they will do. I liked how the urologist put it. He said, "At this point, I have no reason to believe that there's anything wrong with his bladder or ability to be continent, and if it was my child, I wouldn't put him through this test." Obviously, at 3.5 years old, if potty training isn't complete, then we'll give him a call and see what's up.
Honestly, I was not prepared for this at all. Chris and I kind of just assumed that we would be using alternative methods to help Holden achieve continence. So far, that's not the case at all. If it is the case in the future, I probably won't be sharing that with you here :)
I've probably already shared too much on this subject and one day Holden is going to read this and go, "Mooooo-oooommmmm!"
Sorry, baby, Mommy is just so proud that you're going pee-pee on the potty!
Let me wrap up the most boring blog post ever by saying that I plan on vomiblogging very soon (vomiting up all the blog posts I've been saving up in my head) so you can hear all about Holden's various adorable escapades.
I'll leave you with this note to show you how amazing our little boy is. In the 7 weeks that Holden has been home, he has been to 7 doctors and/or OT appointments, had 3 shots, 1 lab draw, 1 in/out cath, 1 renal ultrasound, 5 x-rays, and one MRI under anesthesia, and despite all of that, he has been the most joyful, positive, fun kid you will ever meet. This little guy never ceases to amaze me. His joy is limitless, his strength is incredible, and his love is priceless.
As I told a friend I got to see at MUSC yesterday, "I think everyone needs a Holden in their lives." Hopefully, as I start blogging more, you'll all get to experience a little bit of Holden in your lives and feel some of the joy that Chris and I feel every day.
I didn't think this post was boring at all! I loved all the details, even as a non-medical person, and I'm just so stinking excited for you you, mama, that you are not relying any longer on what information is being passed on to you from another country. You have the boy in your arms, you are talking TO the doctors and have a say in his medical care from day to day. PLUS, now you can see all his amazing feats and adorable escapades IN PERSON! Thanks for sharing so all of us CAN have a little Holden in our lives. ;) -Jen T.
ReplyDeleteThank you so much for sharing about Holden!! It was wonderful to hear the news from the doctors here!! And congrats on potty training!! Holden is a ROCK STAR!!!!!!!!!!! You have every right to be proud Momma! I love what your friend said about everyone needing a Holden in their lives! Isn't that the truth.
ReplyDeleteThis is such an encouraging post -- for Holden's future, and (a little self-centerd-ly) for those of us waiting for kids with special needs. When you have so little information while you wait, it's great to hear such surprising and wonderful news about another little one!
ReplyDeleteNancy