Ellisa’s Neurologist

Ellisa and I went to visit the neurologist the Monday before last. Since I’ve been anxiously waiting for this appointment for over 5 months now, I thought I would share what the Doctor said about Ellisa’s current state.

All signs show that Ellisa is doing really well. She doesn’t appear to have CP (cerebral palsy), and mental retardation is no longer a concern. That is what we’ve been hearing for the last few months, so it doesn’t come as a big surprise, but a confirmation that gives relief to my worst fears. Overall, the neurologist was very optimistic about her future and said that worst case scenario could be significant learning disabilities. That’s not so bad for a worse case scenario. We can deal with this.

The neurologist did confirm, after viewing an MRI of her brain, that there was minor brain damage. The worst area effected from Ellisa’s grade III bleeds was in her frontal left lobe–which effects her motor planning–however, her frontal right lobe did not have any damage. Therefore he is hopeful the right side will compensate where needed for the left. He did mention other areas that suffered brain damage. Those areas also effect her motor planning/development. After examining her he said she seems to be developing fine and he isn’t concerned at this point about other damaged areas.

My worry is, at what point will he be concerned? And what can be done? I mean, can she really get out of this scot free? She had grade III bleeds!

The neurologist couldn’t review a full brain scan, or the full area around the ventricles— the area most likely effected by the bleeds. He felt that since she is doing well now, we can do a full brain scan when Ellisa is one and a half years old if need be. Again, he was hopeful that we wouldn’t need to bother doing another scan assuming her development is on track.

The most concerning part for me is her head circumference. He mentioned with bold seriousness that he too is strongly concerned. I almost fell apart hearing him say it. Yet again, he was hopeful. With that, there are three things that can happen. 1) If her head continues to grow at a regular pace from here moving forward, all should be well. Let’s keep our fingers crossed. If not…2) Her brain tissue may have further unseen damage. Those areas would not grow, hence her brain size would not be within a normal range. If her brain doesn’t continue to grow at a normal rate, we have no idea what the outcome will be. Scary! 3) Some children’s sutures fuse before the brain finishes growing. If that happens, the brain tries to grow but doesn’t have adequate room. In that case, surgery can be done. The doctors I have seen don’t think this is an issue for Ellisa. It’s rare and isn’t associated with her condition, hydrocephalus.

That about wraps up the appointment. Although, I have to add in some thoughts as I can’t ignore the feelings these appointments tend to bring out. Bear with me.

I can’t describe how upset I still am about all of this. Although I am staying positive and enjoying Ellisa’s infancy to its fullest, I am so bitter I can’t stand it. Out of all the women in the world this could happen to, I have to ask myself, why me? Why us? I’m not a bad person. We’re not bad people! We don’t deserve this pain and suffering for our child. If anything, I believe we’re the type of people who deserve the healthiest of children. We WANTED children. We WAITED for the right time in order to provide for them. We did NOTHING to compromise our child’s health. Is it because we’re best suited to handle it? Is this our master plan? I’d like to think so, but honestly, that kind of justification is rubbish. I sure don’t need to believe in my “life path” to deal with the cards handed to me. I simply need to play the cards. And play the cards we are.

Ellisa has been a blessing and I can’t imagine my life without her. No matter what happens, she is always our daughter and we’ll always be thankful we have her in our lives. We are extremely lucky thus far and hopeful that Ellisa will continue to develop into the precious little girl I always dreamed of. I am grateful that she is a happy baby–always smiling and constantly bringing us joy. She’s very special and holds a dear place in our hearts.

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Comments
One Response to “Ellisa’s Neurologist”
  1. Joseph says:

    I would take the “no new news” as good news. If no new problems have developed, then it seems like the more time that passes, the more likely fewer problems will develop. Hang in there! If it ends up that she will have special needs, then there are not better parents suited for it. As you said, you have planned and have made intelligent decisions on bringing children into this world. I know that my wife and I have a giant fear of having children due to the problems that could occur. It might keep us from ever having children at all. I suppose you would just have to ask yourself if you would rather be safe, but never experience having children, or, you find the hurdles along the way were very worth it. I think you already know what decision was right for you.

    Take care and know you have a very strong support system. Let us know if you need anything!

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