Not a Diagnosis, But a Hunch.

I wasn’t going to post about Rae again until the MRI was done, but I had to work out all that’s going through my mind right now. Initially I just wanted to write to write through the probability of getting a diagnosis soon and just keep it to myself, but I think we could use the prayers. Not so much prayers that change the diagnosis, because I know it is what it is, nothing is going to change it, just prayers for peace of mind for me and Big S.

We went to the neurologist last Thursday. To be honest, at first she seemed kind of peeved we were there. Like we we’re wasting her time bringing a 10 month old who walks funny in. She kept insisting that 10 month olds are too young to walk. But she humored me and listened to her medical history. She asked us a few questions, flexed Rae’s feet and just kind of examined the way she stands and grabs things. Then she watched the video I took and posted in my last update, and she asked if Rae had a dominate hand. Well, yeah. She’s right handed. Apparently that’s not the right answer. Babies shouldn’t have a hand preference until 18 months-2 years old, she said. She said her left leg and foot felt slightly tight and couldn’t flex as much as her right. I asked what the weakness on the left side of her body could mean and she said it could be caused by damage to the right side of her brain, but wouldn’t really give me any indication of what that could mean for her. She ordered an MRI (reason written for was hemiparesis and spasticity- a quick google search of those 2 things gave me the dose of reality that the inkling I had wasn’t far fetched.) and told us to go to Children’s Hospital and see an orthopedist to look at her legs further for a second opinion, I guess.

Fortunately for me, they had a cancellation and we actually got in to see the orthopedist yesterday (as opposed to March had we not called right then). Both the orthopedist and his assistant were awesome and didn’t make me feel like I was wasting their time with my concerns (unlike the neuro, but obviously if it wasn’t something to worry about she wouldn’t be sending Rae for an MRI). The orthopedist did the same thing, flexed her feet, tapped at her knees, watched her walk (very straight legged this time and dragging her left foot a bit). He checked her hips to make sure they were straight, which they were. If her hips weren’t aligned right, they would have done an x-ray to check to make sure she didn’t have hip displasia, but they looked fine. Then he started talking about her 2 vessel cord I had when I was pregnant, damage to the right side of her brain (that would be able to be seen when we do the MRI in the next few weeks) and physical therapy, leg braces and surgery and talked about some more stuff she’ll probably be going through soon. But I didn’t hear much else he said. I kind of blanked out after that to be honest.

I’m not surprised.
It didn’t come as a shock to leave there knowing pretty much all my doctors have an idea of what’s wrong with her.
And so do I.
I can’t really even bring myself to write it down yet.
I don’t know if that’s the fear that if I talk about it 100% openly that it’s written in stone.
Or if I’m just not mentally prepared for the uncertainty that comes with the indication that my daughter may have some slight brain damage.
I don’t know what that means for her or her future.
I don’t know what that means for our family.

I want to say I’m praying her MRI comes back clear, but in the back of my mind, I’m pretty much prepared for this being our answer.
I want to think that it won’t change anything about her life and childhood, that she’ll still be able to run and learn and make friends normally. But I just don’t know that yet.
I wish I could look at her and promise her that everything will be okay.
But I can’t.

I can promise that whatever this MRI shows will not even for a moment change who she is to me.

M

10,740 Responses to “Not a Diagnosis, But a Hunch.”

  1. Anonymous | January 30, 2014 at 9:42 pm #

    First off. I was never aware that little ones shouldn’t be walking early, as my oldest started walking around 8 months. Of course we were amazed, but to know her personality, it made sense.

    Second, I am commenting because of the real blessing we share, motherhood. And if I were you I would be feeling the same way. I guess I just want you to know that you are not alone. There are plenty of mommas out there who worry daily from a scratch or sore finger to where their childs next meal will come from, every one of them just as strong as the next. and you to are a strong mother. 🙂 You and your family are in my prayers.

  2. Jenna | January 31, 2014 at 12:58 am #

    You, Rae, and your whole family are in my prayers!

  3. Anonymous | January 31, 2014 at 1:30 am #

    God can take care of everything and anything. Trust in that promise.

  4. Anonymous | January 31, 2014 at 2:50 am #

    Hope all goes well!!! I hate to see any child go through tests and examinations alone, but to wait.for an mri can be nerve wreaking. Ill keep her in our thoughts: )

    Also, 10 months is not too soon! Both my boys were walking completely on their own at 9 months!

  5. Ashley Swift Amaya | January 31, 2014 at 3:42 pm #

    As always Mel, you, Rae, and your family are in my prayers daily. You are very strong, not only being able to emotionally handle all of the doctors appointments, and lil S, with his personality, and just young motherhood in general, but you continue to share with the entire world your struggles, and thoughts. In a sense it may help writing it out…sharing every little step of the way though shows that you are up for anything. You will take whatever this is head on with no denial. Rae is so lucky to have you as her mother, and she gets her strength from you as well. Im so glad that you are finding some answers or getting things narrowed down, It seems like you have found a great set of doctors, willing to work together with you to form the best possible plan for Rae. I’m not going to say everything is going to be all right, because I know thats not what you want to hear. You like facts…or at least I think. I just want you to know you are in my thoughts and prayers daily. God does have a plan.