Roll the die

 

She spins and she sways
To whatever song plays
Without a care in the world
And I’m sitting here wearing
The weight of the world on my shoulders
(Lyrics from “Cinderella” by Steven Curtis Chapman)

Yesterday (Wednesday) was our all-day at Children’s Hospital where, due to a scheduling glitch, we ended up being there a few minutes shy of..  forever! The receptionist told me when we were rescheduling this last week that I was the only parent to not get upset at her that day. So I guess after hearing that, I did my best not to make her life more miserable and ended up getting stuck in a miserable schedule. It was a hard day.

Laelie is fine. She got her blood pressure taken while she was asleep (thanks guys :-/), but no poking, prodding, or testing this time. All that happened was that  she got a splint adjustment, saw her surgeon who moved her feet around (which didn’t  phase her)  and she got seen by some weird-looking (aka NOT mommy) people. Pretty uneventful for her really. It was just hard on me.

I guess the only reason they wanted us back at the clinic (and also the reason we never received our test results from the EMG) was because the doctor wanted to give me  the results in person. She started out telling me about the guy who did the EMG  test and how good he was and what great hands we were in. I started to get a little worried at this point. Then she continued that it looked like Laelia had less muscle than we thought. She may also have some pretty severe nerve damage that we didn’t expect. And…

Gosh this is still hard to talk about and it’s been over 24 hours. Let me try to start over.

We ended up being the first ones in the building for her  first appointment of the day  and the last ones to leave the clinic. It was a long day. At one point I was put in a room where Laelie’s chart was left. It wasn’t in the door like it was suppose to be. So, being the snoopy person that I am, I riffled through it. :)  I never would have gone through a chart I know I’m not suppose to go through even though it’s *suppose* to be open for my viewing (after I sign a form of course). But I was not told my daughter was born with her hips out of her sockets or that her clubfoot situation was worse than normal or  a few other things in the past that  would have made me upset  but changed how I cared for my daughter, so I wanted to know what else I was not being told. Turns out they had a different word other than Amyoplasia in there under her diagnosis  so I grabbed a pen out of my purse and crossed out the word they had and wrote the right word down. (Right on the chart! Yes,  I am so bad. :)) Then I started to flip through the doctors notes, unceremoniously tossing paperclips as they got in my way.  It was weird now they talked about my baby girl. It was a list of big, bad mysterious things wrong with her followed by these snippets of “…and she’s an engaging, adorable girl.” Or something like that. Weird. Anyway,  so I moved right along to the EMG test tab of the chart. It was  discouraging.  I couldn’t read or understand any of the medical jargon but I kept reading, “ABNORMAL” and “SEVERE LACK OF” on all the test results. (That’s not good.)  Then I hear voices in the hall. “Where is the chart for the Wesley baby? (All the other kids have first names but clinic folk tend to revert to “Wesley baby” when they happen  upon Laelia’s first name.) It should be  on room seven’s door. Check the file, we don’t want to  lose it!”   Moments later a med student with curly brown hair  peeked in to “check on us” and, spotting the closed chart on the opposite side of the room (twiddles thumbs), snatched it up and fled. It wasn’t long before  Dr. S came in  with the same med student to talk to us. They both had purses in hand as we were the last patients of the day.  

One thing I love about Dr. S is that she always calls Laelie “my LOVE! My adorable love!” It means that Dr. S cannot pronounce Laelia’s name, but  it  totally charms me every time. :) Anyway, we talked about Laelia’s very low blood pressure and how that’s related to muscles not working to stimulate blood flow. It also explains why her hands and feet turn purple when her splints and braces are on a little tight. That’s why it’s important we watch for that and CHANGE HER AWFUL SHOES!!! I mentioned that my aunt Linda and uncle Bud gave us some money to buy her new orthopedic shoes and that they should be ready in two weeks. The doctor looked satisfied with that. Then we discussed what we came for: Laelia’s EMG results.

After Laelie’s EMG, they told us they would recommend a muscle biopsy to  Laelia’s neurologist. So when Dr. S  brought it up I was ready for it. But  since it’s a hard test (it’s painful and will leave a permanent scar),  they want  to schedule it  with her surgery on her feet so she will be unconscious. Since her surgery gets  put off every two months, there’s no date set, but we figure around her 18th month.  This test  *might*  give them a better idea of what  is wrong with the muscle/nerves in her body. Dr. S told me that there is a 2/3 chance that we may get a diagnosis from this test. She already has a diagnosis of arthrogryposis with amyoplasia, but this would be some other diagnosis to maybe explain what caused her AMC in the first place.  A 2/3 chance of finding something  leaves a 1/3 chance that we will be in the category of “something is wrong but we have no idea what.” If we can’t find out what is wrong then we can’t continue in the muscle clinic. We won’t know what caused this and we’ll have no answers.  But if we can find out (2/3 chance) then we will have a shiny, new diagnosis.

Clear as mud? Good.

If she is what the doctor suspects and falls into that 2/3 category, it means… that I.. will have a 25% chance of having another severely physically disabled child on my next pregnancy.

“That’s 25% or 1 in 4. Do you understand what I’m telling you?” the doctor asked. I responded that I wouldn’t be having any more children with those odds and the doctor looked visibly relieved.

I mean think about it.  If someone  gave you a four-sided die and said if you rolled a “2″ your next child won’t be able to move her arms or legs, would you  even roll?  Those percentages are too high! That’s a human life!

That was really hard for me to hear. I had just been talking about having another baby and how weird it would be  to have a wiggly newborn. Plus it’s not fair. Charley and I make such adorable babies! :’-)

I have been so upset about this. I even started  researching and signing up for more information  at adoption websites. I don’t know if this is an option for us, but for the first time in my life I can envision meeting my baby at the airport and welcoming him or her into my family. I have been looking for kids with AMC because, well, I know AMC pretty well by now and I would have none of the guilt feelings associated with giving my baby AMC, but just good feelings associated with caring for a baby with AMC. If that makes sense.

I don’t make much sense lately. Because I think the more I fell in love with a new child, the more I would worry and be sad about what they wouldn’t be able to do… and the more ignorant people I would have to put up with. And if I think that I’m in paperwork hell now… well.

I actually went to work today. I think it might have been a bad idea. Okay I’m also sick so it was definitely a bad idea. I just had customers waiting for phone calls so I went. At one point I was overwhelmed and I started tearing up at work and a coworker noticed and said, “There’s no crying in baseball!” Which for some reason made me feel better. :) I wised up and am taking tomorrow off to recover emotionally (and physically, kinda sick-ugh). Then  I can spend the day with Linda since Friday is her last day with us before moving to Bakersfield.

I think Laelia will really miss Linda most of all. Laelia has a terrible time eating Cheerios and our OT said it might be because she has never handled them so Linda had this ingenious idea of putting  Cheerios in a bowl and letting her play with them.  So adorable!

Speaking of amazing things my daughter can do, I just put Laelie down for a nap and when I turned on the monitor downstairs I heard the weirdest noises. I ran back up the stairs to see what was wrong, and saw my little love smacking the living daylights out of the monitor. Take THAT NAP! For a child with pretty dismal test results, she sure finds enough mobility to be ornery! :) I love it!

And she wiggles and sways  to  whatever song plays as the lyrics above suggest. She especially loves Dr. Horrible. Which of course has caused me to play it constantly. If you haven’t seen it, it’s a 40 minute long  show about a super villain who is trying to get into the Evil League of Evil. One song is about a freezeray and  another is about how Dr. Horrible can’t bring himself to talk to a pretty girl at the laundry mat… no wait that’s the same song. :)  Pretty rockin’.

So even though it looks bleak, there is still hope. Doctors don’t know everything.  Plus my hope is not tied up in test results. My hope is in God.  It’s in nothing less. And test results are WAY less. :)  

One Response to “Roll the die”

  1. Robin Clark says:

    Hope in God means everything. Doctors are not gods!

    Laelia has so much tenacity and does more than any baby with “a severe lack” of anything could possibly do!

    Diagnoses are quite scary. I’ll never forget when we found out that Brenton’s vertebrae weren’t formed correctly (age 15) and that half of his spine had to be fused. The name of the condition and the surgery and the whole thing seemed insurmountable. What he has is not comparable to Laelia’s condition by far. But I do know that those “medical words” bring the evilness that Dr. Horrible sings of!

    God is there with you in this for the long haul. The one thing that got me throught waiting for Brenton to come out of his 10 hour surgery was the 23rd Psalm. I mostly kept repeating “I shall not want”….

    God bless you all,
    Robin Clark

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