Prayer for Lilly

Normally my blog is all about bright and bubbly things that are going on in our lives with the kids, but sometimes life isn't always bubbly and bright, sometimes we hit bumps along the way. Sometimes we need prayer warriors on our side for things going on in our lives and this is the reason that I write this blog!

 A few months back we started noticing that Lilly was having trouble walking. I could describe it as "Hobbling"... At times it is bad enough that she is practically dragging her right foot. I had been watching it get worse and worse. I noticed it the most when I dropped her off for school and would watch her walk into class. I thought maybe at first that her shoes were too small and she was walking to compensate that. They were in fact too small, and we bought new ones, but that didn't help the problem. She had a jog a thon at school and was very sad that she couldn't do as many laps as the other kids. She couldn't pass her swimming lessons class because it "hurt" to kick her legs.  I decided it was time to take her to the pediatrician.

We saw the pediatrician in May and he saw something with her reflexes that led him to refer her to a child neurologist. She had some blood work done and the referral was sent over. They couldn't get her in for TWO months.

Last Friday, the 8th she had her appointment with the child neurologist. I went in, not really knowing what to expect and honestly pretty confused as to why we were referred to a neurologist to begin with. I really thought when she went to the pediatrician that he was going to say she had just learned to walk funny and refer her to a physical therapist.

He examined her thoroughly!! He had her walk up and down the hall, with and without shoes. He had her walk on her tippy toes, and on her heels. He had her bend over and examined her spine. Then he tested her reflexes extensively.... and I mean that literally. He spent maybe 7/8 minutes solely doing this. He tested the reflexes in her knees, ankles, and under her feet. He examined her armpits. The movement of her legs, even her birth marks he was very interested in.

After he finished his examination he began to talk to me about what he thinks is causing the problem. Now before I went into this appointment my friend Kristi gave me some great advice about dealing with specialists. She said to hold my ground and make sure that I understand what they were talking about and to ask questions if I didn't. I was glad for this advice when he was talking to me about possible causes because he kept saying that she could have a "T". He talked to me about a "T" for a good 5 minutes all the while I had no clue what he was talking about so I finally asked. "What is a T??" He whispered "tumor". Needless to say I was NOT prepared to hear that word. Had I not asked I would have gone home and googled "What is a T".

SO what does this mean? He wants her to have an MRI. He mentioned 2 things that he feels it could be. 1. is a tumor. 2. Is some sort of lesion that was formed on her brain in utero that formed on the area of the brain that controls her "feet/legs". I asked what we would do if that were the case and he stated that there may not be anything that he can do for that. That it would be something she would have to learn to live with the rest of her life with therapy.  I asked about her spine/nerves and he told me he would explore that option if nothing shows up in her MRI. He kept reiterating that he really feels like doing the MRI is the right choice and that he will get to the bottom of what is going on. He stated that he has been doing this 20 years and there is no reason to go running a whole bunch of tests that are unnecessary when he has a really good chance of finding out what is wrong with one test. So he feels strongly that what is going on is related to her brain in some sort of form.

Hearing all of this came as quite a shock and hearing the word tumor was really scary considering her family history of Chris' dad having brain tumors. It would be really easy to say "oh I'm sure it's nothing" but we don't want to be naive. At the same time however we DO know that God has a perfect plan for our baby girls life. Her MRI is scheduled for Friday, July 22nd at 9am. They will be giving me valium to sedate her a bit because of how loud and long the test is and she has to lie still for it.  We are asking for prayers for Lilly through this procedure. For us, her family as we deal with all of these possibilities. For God's perfect plan in Lilly's life.