Zoe’s Development

I’d like to note a few things about Zoe’s development, since that is one of the things that can be affected by this process. The two main threats to good physical and neurological development are the extended use of steroids, and histiocytes in the spinal fluid doing damage to the brain if not caught soon enough.

Infant development is hard to put a finger on, since different kids do things at different ages, but it seems the best way to track it is after a certain point if she is not going x then we should be concerned, but we shouldn’t expect her to do x right at an exact time. The guideline I see most commonly is 3 months — if she is more than 3 months past due for a developmental step, we should look into it. It doesn’t necessarily mean a long term problem, but that’s the point at which we should be more concerned.

Zoe is 4 months old now, and generally at this age she should be holding her head up, resting on her arms when on her belly, smiling and moving her legs. She could be starting to try and turn over as well, from what I read.

With that in mind, right now we feel very positive about where she is. Zoe holds her head up very well, upright or on her belly. She still has a ton of extra weight on her face, and I am sure that that impacts her somewhat, but she is easily able to track people around the room, so it doesn’t seem to be affecting her too much.

She does well on her belly, usually propped on one elbow and one hand, and can keep her head aloft for a decent amount of time like that. She grabs toys, turns them around to look at different sides, and bats at them sometimes to make them jingle. She also has taken to throwing her arm across her this past week or so, which may be the first steps toward rolling over. To be honest, I’m not sure she will be strong enough for that for awhile, she has put on a pretty decent amount of weight from the steroids, but we shall see.

In terms of neurological steps, I’m not sure how well we can judge that yet. She tracks people with her eyes and moves her head when they get to far to one side. She laughs, smiles in response to seeing people she knows, and frowns when she sees something she knows she doesn’t like (like her med syringes). She has also taken to making noises in response to us when we are making noises and talking close to her, but I could be reading too much into that. 🙂

As best I can tell, we haven’t seen any problems yet. We still have a long way to go, but I am much more optimistic now than a month ago that Zoe will make it through without anything that would hinder her from having a perfectly “normal” life.

2 thoughts on “Zoe’s Development

  1. She looks like she’s as ready as possible for the next challenge. Certainly we all wish that you were not summering in Durham, but I agree with Evan that by the fall, you’ll be back home celebrating Zoe’s recovery. Love, Mara

  2. I’ve been reading some of your story tonight. I haven’t gotten past this post but its very touching. Almost 2 weeks ago now a very close friend of mine lost her 6 year old son after he had been fighting his battle with FHL for nearly 2 years. He was such a brave little boy, unfortunately a fungal infection after his 1st BMT left him vulnerable and he passed just a few days before his scheduled 2nd BMT. There is so little knownabout this condition and I have learnt a lot from your posts. I know this blog is very old but I look forward to reading the rest of your story.

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