Thursday, September 29, 2011

Appointment review and a rant... or two

We're done seeing our specialists for the month. Urology went well with nothing new to report. He peed on the urologist but seriously, I wonder how many times a day that guy gets peed on...

Anyway, next was orthopedics. Orthopedics always makes me nervous. I've never really had a reason to be nervous before. Now I do. But let me start from the beginning. We had been seeing Dr. H but at our last appointment he told us he's moving out of state so he set up our next appointment with Dr. R. I met her for the first time at this appointment. She's very nice and so far I like her. Except for this conversation...

Dr. R: Based on Dr. H's notes, it looks like Lewis's defect is at the L4/L5 area.

(I've read the notes that she's talking about and in the notes it says that I told him that. I NEVER told him that. I don't even KNOW Lewis's level but if I had to guess, that's not even what I'd guess.)

Me: I don't know his level.

Dr. R: Well, it's good that it's L4/L5. Kids with that lesion level typically will have a desire to walk. Any higher than that and we don't see that as much.

Me: Ok.

Conversations like this REALLY REALLY bother me. They make me very angry. I wish I could come up with the words to say in the moment but I never can. She said all this before ever even looking at or touching Lewis. Not only that but I DIDN'T ASK HER TO TELL ME WHETHER LEWIS WILL WALK. I don't think anyone can tell me that. My world does not revolve around whether or not Lewis will walk. It is not always on my mind. When I meet someone and that's the first thing on their mind, it throws me off a bit. Wait, do you not see my beautiful child? Is that all you see?????

The whole lesion level thing really bothers me, too. All it does is cause heartache and worry and give us wrinkles and grey hair. It tells you nothing.... NOTHING. Every day I hear, "he's an L3 but he's functions like an L5." Really? What is an L3 supposed to function like? Because it seems like NO ONE FUNCTIONS AT THEIR LEVEL. So maybe the level really actually doesn't mean a gosh darn thing!

Ok my first rant is over, on to the next.

Next, Dr. R checked Lewis's spine for scoliosis. She said his spine looks great. YAY!!! This got me thinking back to the whole syrinx thing that is still up in the air. To refresh your memory: Lewis had an MRI in May and they found a rather large syrinx, which is excess fluid on the spine. He's not showing any symptoms, but according to his neurosurgeon, Lewis may not be able to tell us even if he is experiencing some of the symptoms (pain, tingling, etc.). He'll have another MRI in November and based on that, Dr. F may decide to operate. He'll either do a decompression or a tethered cord release. He'll probably start with a decompression, but there's no guarantee it will fix anything. So... my point in all this is that scoliosis could be a symptom of a syrinx. And, guess what?! No scoliosis! Now, what about the other symptoms that Lewis can't tell us about? Pain? I'm like 99.9% sure Lewis is not in pain. Have you seen this kid? He's so happy! And if he's not, you know it! That kid is not in pain! So, what are we left with? Tingling? Really? You'd do brain surgery for some tingling? That just seems completely and totally ridiculous. Just CRAZY! I realize we're trying to prevent damage, but I know the signs to look for and I'll take him in the second I see any of them. But we're not going to be doing some preventative brain surgery that might not prevent anything.

You have got to be kidding me...

Back to the appointment. Lewis had X-rays of his hips 6 months ago since he's at risk for hip problems. He had them again at this appointment and they showed his left him has moved out quite a bit. Bummer. They won't do surgery for these hip issues in kids with SB since they don't have the muscle mass to keep anything in place once it's surgically placed there. I'm thankful for no surgery. They're ordering him an abduction brace that he'll wear at nighttime to hopefully carve out a spot for his hip to sit. Having one hip out can lead to one leg being longer than the other (among other issues, including scoliosis), requiring him to wear a lift in one shoe. We're a long way off from that and we're praying this brace does the trick. It's frustrating, and I feel like I did something to cause this to happen, but I'm not as worried about it as I thought I'd be. This stuff is not the end of the world like I always think it will be. If only I had known that while I was pregnant!

Crossing my fingers! Hoping this brace does the trick!

Monday, September 19, 2011


Lewis fed himself with a spoon for the first time the other day. I'm using the term "fed himself" loosely... but he really did catch on quickly, I think. Of course I have the whole thing on video for your viewing pleasure. I realize it's a ridiculously long video of a one-year-old eating applesauce, but I've already watched it approximately 40 times (I can't get enough of it!!) so I think you can suffer through it once. ;)

Friday, September 9, 2011

15 Months

If this post is a little choppy or sounds like I have my mind on other things, I do. There is a huge spider lurking around my computer. I tried twice to kill it but this thing is the Jason Bourne of spiders. I just know that the next time it turns up, it's going to be crawling up my sleeve or somewhere equally mortifying. So I have one eye on  the screen and one eye looking for the spider. Anyway, I decided it's about time for a formal update. Lewis just had his 15 month appointment yesterday and here are his stats:

Weight: 22 lbs
Height: 29 1/4 inches
Head Circumference: 49 cm

He's gaining weight like a champ... keeps moving up those percentiles. He's become very picky with food lately and doctor told me he's gaining well enough that it's safe for him to go hungry for a meal if he won't eat what's given to him. He's refusing things that I know taste good and I know he has enjoyed in the past... it's getting ridiculous. So I'm going to try to nip it in the bud. We'll see how it goes...

His height is on the small side, but he's on the charts, so I'm happy!

His head circumference has always been in the 70th percentile and has recently jumped to the 90th. I had noticed it was steadily growing from the few times I measured it at home. A jump in head circumference in Lewis could mean that his shunt is not working properly. Lewis's soft spot is open and when you feel it, it's clear that the shunt is functioning. There are times when it's soft, and times when it's sunken, but it's NEVER full. The doctor asked if we had a family history of big heads. Um... YES. So it looks like Lewis is growing his Miller-sized head. Overall, the doctor is very happy with his development!

Lewis has a bunch of appointments coming up this month. He sees Urology, Orthopedics, and has a full clinic scheduled (although since we're seeing everyone anyway, I think I may cancel the clinic appointment). In November he's supposed to have his follow up MRI to check the syrinx they found on his spine. Please keep Lewis in your prayers on this. We'd like to avoid surgery if we can and are praying that the syrinx will go away on it's own.

Therapy is going very well! We're going twice a week until the end of the year (probably with a couple breaks here and there). This week Rene was working on Lewis's right hip. His right leg is his stronger leg, but because of that, his hip is tight so she worked to get his hip to relax and loosen up. When we got home yesterday, I put Lewis down for a nap and watched him on the video monitor as he squirmed around in his bed instead of napping. While squirming, I saw him lift his right leg up, grab it, and bring his foot all the way to his mouth. That hip has ALWAYS been too tight to reach up that far! I was pretty excited to see him do that! All this without doing any stretching... pretty amazing!

We've also been working on some things with his arms but I'm hoping to get a video of it soon, so I'll save that for another time. He's making great progress. More importantly, though, he's being a good sport about it and he's working hard. I want that to be the focus in years to come. Lewis may or may not do certain things and there will be a point where he can't progress any further. I want him to know that it's the hard work and good attitude that are important, not the milestones or achievements. I'm starting now because I think he understands a lot more than I give him credit for! :)

Hiding... as usual... from anyone and everyone! 

P.S. The spider is still on the loose...
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