Make-A-Wish Visit!

We had a great visit from the Make-A-Wish volunteers Christa and Cody this evening. The process of granting a wish can sometimes take up to a year, so it was especially nice to get a quick visit from our new found friends who came bearing a gift!  Stephanie is now the proud owner of a new Jewel t-shirt!  Thanks Christa and Cody for taking the time out of your busy lives to put a little smile on Stephanie's face.  We anxiously await news of being able to meet Jewel in person...to be continued!

Surgery Plan

So we have a plan (or plans) in place.  Either way Stephanie will be having surgery at the end of July. 

Once again we are going to try to get Stephanie's intracranial pressure down by significantly increasing her Diamox medication and putting her on a second round of steroids until July 18th.  On that day, the neurologist will do another lumbar puncture to check her opening pressure.  If the pressure is reasonable (the surgeon wants it to be under 20 cm H2O), Stephanie will undergo the Corpus Callosotomy that we are hoping for.  If her pressure is still too high, she will be receiving a VP Shunt, which should hopefully decrease her pressure over time so that she may be eligible for the corpus callosotomy in the future.

Only time will tell how this plays out but for now at least we can expect some type of surgery by the end of July.  One step closer to getting some much needed relief for Stephanie, both from her seizures and her increased pressure.

Wish her luck!!!

Waiting...

So this week we are waiting to hear more about what treatment will give Stephanie a better quality of life.  In my last post I mentioned that she couldn't have the corpus callosotomy due to her increased intracranial pressure.  We saw the neurosurgeon last week and discussed alternate options.  We could try the Vagus Nerve Stimulator and give her a VP shunt sometime afterwards to deal with her pressure.  I still don't have much hope that the VNS will make much difference for her.  The other option is to go ahead with the shunt first, hoping that it would decrease her pressure enough to allow the surgeon to perform the corpus callosotomy.  Either option is still months worth of fine tuning the setttings (VNS and shunt both need to be set to an adequate level to work for Stephanie).  I emailed the neurologist last week and he advised he would be speaking with the surgeon this week to come up with a plan.  Surgery could be for the end of June/beginning of July.

On another note, Stephanie's collar bone is healing well and she no longer needs to wear the figure of 8 brace!  What a trooper!  I still cannot believe that this kid broke her bone and continued with daily life as if nothing had happened...we can learn from this!

Oh, and one of the Make-A-Wish volunteers called last week to let us know that Jewel has granted other wishes and that they were still in the process of contacting and making arrangments.  In the meantime, they will be purchasing Jewel merchandise to send over to Stephanie to enjoy.  How great is that?!  I guess I had better get moving with obtaining a passport for Steph...yikes!

Surgery Postponed

Today is a difficult day.  Stephanie was being considered for Corpus Callosotomy surgery, which was going to be performed either May 8th or 15th.  I say "considered" because the neurosurgeon was reluctant to do the surgery due to Stephanie's increased intracranial pressure.  She has been on prednisone for the month of April in hopes of lowering her pressure to a level (under 20cm H2O) that made the surgeon more comfortable with the risks of the surgery.  On Wednesday, her lumbar puncture revealed that not only was her pressure too high, it was even higher than in February!  At that time it was 28cm H2O and now it's 33cm H2O. After continually injuring herself from drop seizures, including breaking her collarbone a few weeks ago, I really had very high hopes for this surgery and the quality of life it might have brought to Stephanie.  The consideration now is for the Vagus Nerve Stimulation implant to reduce her seizures and/or a VP shunt to control the Intracranial Hypertension.  We nervously await any news from the neurologist and neurosurgeon for a decision and surgery dates.

On another note, for those of you that aren't friends or family and want to get to know Stephanie's story from the beginning, please browse the links/pages on the right hand side of this blog to learn more about her, her medical conditions and hospital visits, and of course all the great and happy things in Stephanie's life!!!  Since this is still a work in progress, please forgive any missing information as I continue to edit descriptions and upload pictures.  And as my husband so kindly reminded me, I will include the happy moments in Stephanie's life!  She is a gift in our lives and I think all those who love her agree that she is much, much more to us than just the medical challenges I have outlined on this site!

The internet has been an invaluable tool for me during the last couple of years and researching has been a great coping mechanism.  I feel that the more I know about a medical condition etc. the more in control I feel over what is happening to Stephanie and the better I can help her get through it. I hope that makes sense.  The greatest help for me has been reading and following other parents and families that have chosen to share their stories and experiences.  For this I am forever grateful and I hope that my choice to share can also be of help, in any small way, to that one person searching for some answers and comfort.

Welcome!

The intial startup of this blog is taking longer than I expected and I now realize that because I tend to try to make everything perfect, it might take forever before I get this thing up and running!  So with that said, I will get back at it for now and let you all see the progress as I get things uploaded and provide as much detail about Stephanie`s journey as I can.  My next post will most definitely be about Stephanie, her conditions and what brought us here today.

Cheers!