A Willow update

So today Willow had a few appointments.. nothing major, but I have realized that she has had a few appointments recently and I have not done a great job of updating our friends and family (sorry things are crazy busy when we get to be 'normal' with no health issues!)

So last week she had an EEG done, well I called them on Tuesday and got the answer that no seizure activity was found, it came back normal during sleep and wake states, and that there was some background anomalies but those were to be expected due to her condition... Only I was getting this information on my voice mail as I missed the call, so I am not sure what they mean by that. But we have an appointment in July, and unless I see anything else or more seizures between now and then, I guess we will be happy and content with she is okay!

Today she had an appointment with her eye doctor to get the go ahead for tear duct surgery at the end of the month... Well, we got the go ahead to skip it!! :)   Woohoo!! Her tear ducts are narrow, but they are both open and allowing tears to flow down into the nasal cavity so that is good news.  We are still being given the option to go ahead with it at a later time, but due to having tubes placed recently, and shunt surgery as well, she would like to not put her under again so soon if it is not causing trouble for her (which it isn't). We go back in April though for a vision re check to make sure the glasses are still needed, and to check why she is tilting her head.. When she focuses on something so intently, she will tilt her head a bit on the right side, and while it looks cute (and reminds some friends of a dog when you call their name... lol) it could mean vision issues as well. So we are on watch for that.

We also had her physical therapy appointment today, and that went well. We actually decided that we are going to get her fitted for SMO's http://www.surestep.net/smo.php   It is a brace for her ankle/foot that goes just above her ankle to help keep her stable.  We are also seeing her sit in the "W" position more now (and really she never did it before, so to say more means at least once a day). Here is a link to a picture of what it looks like: http://medical-dictionary.thefreedictionary.com/W+sitting It could mean a few things with her, like her hips are still disjointed, muscle weakness, etc.  Right now though we aren't seeing too many horrible effects from it though, so we are just told to correct her whenever we see her sitting in this position.  Basically now that the script is written for those, we wait to get a call from the correct doctor to get her fitted for them!! :)  Our baby should be walking properly in no time!

So for now, we are still taking each day as it comes, enjoying them as we can and just trying to get through each one with a smile! :)


Colleen said…
Great news - thanks for the update. I appreciate you sharing the information!

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