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  Hug

  From VanMark Wednesday

  Hi Amy,
  
  Thanks for the message. Vanessa's next MRI is this Friday and we will be meeting with neurosurgery and oncology next week to discuss the findings. We are keeping our fingers crossed as Vanessa seems to be doing very well. She is on the verge of walking (it seems to be more of a confidence thing holding her back a bit) and she is talking at about the level you'd expect from a 18 month old. She wears a soft-helmet during her active times as she does lose her balance from time-to-time and it works great. We call it her "go-hat" because when she puts it on she's gone! Thanks so much for the message and I'd love to hear how Emma is doing. Take care and I'll talk to you soon I hope!
  
  Mark

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  I’m With You

  From VanMark August 19

  Hi Amy, just checking in to see how you're doing. Hope all is well and that you're having a great summer! Since the last message I sent you we've had some good news and a little bit of troubling news. The good news is that Vanessa's shunt is working well - so well, in fact, that her 3rd ventricle is completely normal now. The troubling news is that because her brain is now the normal size for a 15 month old, there is a lot of empty space between her brain and her skull. So basically, the subdural hygromas are a lot worse and they are concerned that until her brain grows enough to fill that space, she could be at an increased risk for brain injuries / bleeds if she were to fall and hit her head. So, they are recommending that she wear a helmet while she is learning to walk and until she is steady on her feet. Of course there could always be worse news, but it's still a little bit discouraging. We're still holding our breath and praying that the next MRI in November will show no change in the tumor. Thanks for listening and I hope to hear from you again soon!
  
  Mark

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  Hug

  From VanMark July 28

  Hi Amy. Thanks so much for the message. I'm really glad to hear that Emma is doing well and that her MRI is stable. Vanessa is doing well, but is still quite far behind on her gross motor development. We have a Physiotherapist who comes to our house every two weeks or so to work with Vanessa and we are certainly seeing progress. The feeling is that her large head is throwing her off balance and that she will eventually grow into it. She has a head ultrasound this Thursday to see if her bilateral subdural hygromas have resolved on their own (as neurosurgery is hoping they would). We really hope that they have, because if there is no improvement, or if they have gotten worse, it could mean a shunt revision, or possibly a second shunt. Vanessa's next MRI is not scheduled until sometime in November, so it seems that there is always something else that we need to hold our breath and wait for. Thanks again for the message, I really appreciate it. I'm sorry to hear that your summer hasn't been very good weather-wise, though at this point I'd gladly trade you for some of your rain - it's been oppressively hot here, and they tell us that we are going to bread an 80 year heat wave record this week - yikes! Talk to you soon, Mark.

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  Flower

  From xXforeverOaOchildXx June 10

  fresh flowers for the beautiful toddler and her mommy!

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  Superhero Status

  From ErnestE May 21

  WELL PRAISE GOD, this is wonderful news. I am so glad that she doing so good. I pray that that she has a long, healthy, happy, and surgery free life.. Please let me know how things are going from time to time.. In Christ's Service Ernest

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