SERIOUSLY?? The boy is two….He does talk a ton for his age but we are certainly not to the point where we are able to verbalize if something hurts…and he’s in a diaper for goodness sakes – I can tell you stuff is still coming out but that’s about all I’ve got!
Actually....In all reality, I would pay $45 dollars any day to hear the neurosurgeon say he’s doing wonderful and that she just wants a repeat MRI in the fall (one year after the last one) but that she does not expect there to be any changes! I just do find it humerous that they have trouble figuring out how to ask questions that a mom of a 2 year old could actually answer J
So….Neurosurgery check up…..CHECK!! They were thrilled and very excited about how well he was doing – and couldn’t believe how big he was!!
On we move to orthopedics. I <3 Dr. Loveless (his orthopedic surgeon). We know each other professionally (I see many of his patient’s), I am friends with his daughter (she used to work with me and had a baby girl about a week before Easton…we did bedrest via text together the last few weeks of our pregnancies) and now I know him as a patient (or patient’s mom I guess). I love his ability to do amazing things in the OR but then be able to share puffs with my kid while in the office J
So after our last visit about 6 months ago, Easton came home with prescriptions for a night brace for his hips (it keeps his legs apart which – simple explanation – puts his hip joint in the perfect position for good joint/bone development as he grows) and some twister straps (these help him keep his feet facing forward when he walks). From the beginning there has been talk about the need for surgery eventually to correct the twist that Easton has at both of his hips and both of his lower legs (thank you spina bifida) L but the plan has been – much to my dismay actually – that we wouldn’t do the surgery until he was 7 or 8 years old.
That’s what Dr. Loveless thought was best and I was going with it….He’s the expert – and has been doing this for a long time (he assured me that his bald head proved that) J
Well, now I’m convinced that the man is just trying to keep me on my toes by throwing me curve balls!! When we saw him last week he was very impressed by how much and how well Easton is walking and said that having surgery NOW was on the table as an option if we wanted it to be!!
WAIT?! WHAT??!!
Ok, so let me break it down for you!
His legs twist at the bottom because of something called tibial torsion (there are two bones that go from your knee to your ankle, your tibia and you fibula…the fibula in this case is just along for the ride…..we are only really concerned about the tibia) – every baby is born with it (it’s why babies look bow legged) but typically, as a child starts putting weight through their feet the tibias naturally and gradually start to unwind (for lack of better way to explain that).
But Easton walks….so wont his unwind too?? I asked that too!! This was Dr. Lovesless’ explanation when asked….well, first of all if that was going to happen it would have because he has been on his feet for over a year at this point and second of all, in his experience, kids with a neurological issue (that would include Easton) typically do not see that natural unwind even if they are weightbearing (putting weight through their feet). So, when it doesn’t happen on it’s own…they correct it with surgery – I won’t go into all the details….at least for now but its not super fun, involves bone twisting, plates and screws.….Yuck and bummer but OK…..I suppose it’s a necessary evil
His hips are a little more complicated but along the same line….The angle that his femur (the bone in your upper leg) meets his pelvis (making the actual hip joint) is not what it should be so again…bone breaking, realigning and screws and plates are involved.
So, at our appointment this time around when I obviously questioned Dr. Loveless’ expertise (I’m a mom….it’s my job) asking why this surgery was suddenly an option now when it wasn’t a few months agao….this is how he explained it:
“Yes, I did initially say that he couldn’t have surgery until he was 7 or 8 but now I changed my mind” J
Actually there is more to it than that….
No matter what, Easton is going to have to have this surgery at some point. Here is where it gets tricky…..
If we do it now he MIGHT (Dr. Loveless used the word PROBABLY but I like might better) have to have surgery again when he is a teenager. If we wait until he is 7 or 8 then he would probably only have to have one surgery.
So when I put it like that, it sounds like a no brainer right? Obviously who wants to put their kid through 2 surgeries??
Yeah, not so easy….
If we wait until 7 or 8 then we are stuck with twisters until then, plus feet that often don’t face the right way. In addition we are allowing his muscles to fire in the wrong line of pull for another 6 years (not ideal at all!!) Add to that that at 7 or 8 he is going to be able to understand more of what is going on which is going to lead to more apprehension and fear. Plus he will be able to remember it more! We will also have to worry about missing school and since both of his legs are going to be in casts….getting him up and down the stairs would be way harder after 6 more years of eating like it’s his job!! BUT…he would only need one surgery
However, on the other hand, if we do it now….we get to say goodbye to twisters (yippee), his muscles get to start pulling in the right way NOW (makes my PT heart happy), he’s not old enough to understand it or remember it, we don’t have to worry about school and he’s still light enough that I wont have to be an Olympic lifter to get him upstairs. It “MIGHT” mean two surgeries, but not until he’s a teenager – when I feel like you can at least reason with him better and he will be old enough to understand why we are doing it.
Naturally, after questioning Dr. Loveless’ doctor knowledge, my next question was “what would you do if it was your kiddo?”
Without hesitation this was his answer – “I would do surgery now, no question. I’m not scared of surgery (says the orthopedic surgeon) and I feel like it is going to make a big functional and mobility difference for him in the long term.”
Again, totally thrown for a loop! What makes this even more ironic is that when I went to see him last time – E was about 17 months old – I begged him to do surgery now! I was so tired of his poor little feet getting in the way….But, Dr. Loveless said no. He admitted at our appointment this time around that he wanted to see what they little guy did on his own because unless he felt there was going to be a significant mobility and functional improvement, the option of surgery now would not be on the table. The last time we saw Dr. Loveless, E had just started taking some steps in the walker….He’s come a long way, even with his bad feet!!
So, after some thought, some prayer, talking it over with some of my co-workers (having some amazingly smart, experienced and talented people at my disposal is pretty nice!!) Stephen and I have decided “surgery doesn’t scare us either” – well, that may be a bit of an overstatement….but we are going to go ahead and do surgery now and deal with what that MIGHT mean as far as additional surgeries in the future – I serve a BIG God…just throwing that out there J. This momma (and daddy too) just can’t push aside the “significant increase in function and mobility” that could make such a difference in his life – especially in those beginning years of school!!
We aren’t doing anything right this second! Dr. Loveless and I agreed that that it would just be cruel to put E in casts now, in the middle of summer!! I’m doing some insurance research and we are planning surgery either for November or January of 2016….I’ll keep you all posted!
The twins are enjoying summer so far (ie – Mackenzie is spoiling them rotten). They got to visit MOSH and see the dinosaurs exhibit (Easton has told me no less than 300 times “dinosaurs move”). There have been some trips to the park, a trip to the pool and lots of playing outside. From what I understand, there is all kinds of fun on the agenda for the rest of the summer.
They are officially registered for kindergarten – I’m still in denial….and I won’t know any more about classroom assignments etc until sometime in August. Stephen is getting ready to start his “summer hours” which means he goes in crazy early but gets done at 3:30 which will be really nice! I’m hanging on for dear life at work – it’s been crazy but I have some amazing families/kiddos on my caseload right now so I’ll deal with the crazy!! I wouldn’t want it any other way!
I’ll try to get some summer fun pictures up soon!
Thank you for continuing to follow our story!!
We are plugging along – and having lots of fun along the way!
Love and hugs
The Diehls