Holly is having her MRI done tomorrow, she wasn't suppose to go until December, but Theresa thought it would be better to go ahead and do it now with the blurry vision thing going on.  We just want to make sure everything is still going well with her bypasses.  We are also going to have her tested for hypoglycemia(sp).  Anyway when the results come back, I'll let you know, meanwhile, I'll probably be a nervous wreck for the next week.

Just hoping everything looks good

Hillary

Hi Hillary,

Our prayers are with Holly during her testing.  Hey, looks like you'll be there the same time as DJ!   ;;D  I hope all goes well with Holly.  I think it's time for me to have additional testing done as well...and it's so ironic.  As much as I preach how we should advocate for ourselves and not take "no" for an answer when our gut feeling is telling us otherwise, I'm having the darndest time getting my neuro to do additional testing!  I've been having headaches recently, but as of yesterday and today...I've been also feeling a little dizzy!  It's quite scary.  [smiley=eek.gif]  I called his office, and they told me that he said to "drink more fluids."  I didn't mean to sound sarcastic, but I said "how does he know how much I'm drinking?"  They said "I don't know, but he said to just drink more fluids."   :-[

Anyway, let me stop rambling off the subject.  I'm just so happy to hear that they are looking into Holly's recent vision concerns and being proactive!  That's awesome!  I wish I wasn't so far (like 10,000 miles) away from my neurosurgeon!  :-/

Please let Holly know we're thinking of her...Let us know how things go.  Try not to stress too much, but from one mother to another...I honestly know the feeling.  [smiley=hug.gif]

Take care Hillary,
Shan

Shan,

Thanks so much for the reply, I wish we were going to stanford, but we will be staying in Texas for this one.  I'll let you know how things go.

Hillary

Hi Hillary,

Until I read your last post, I was jumping up and down thinking that'd we'd get to see you while you were here!  We've been enjoying hanging out with DJ, and it would be nice to see you, too!  Guess we'll have to wait until Orlando though, huh?

Anyway, I'm sorry to hear Holly's been having some problems, and will definitely be saying some prayers for her testing to go well, and good results to follow.  We'll look forward to an update when you get around to giving one.  Until then, keep the faith and try not to worry too much . . . things will be o.k.

Big [smiley=hug.gif], Jill

Hi Hillary,

I know how nervous it can be to be waiting for results and answers. I pray all goes well for Holly.  

Kevin's vision has really gone down hill fast.  I'm concerned about him as well.  I'm not sure it is "blurred vision" just worse eyesight.

Keep us posted on Holly and you all will be in our thoughts and prayers.

Hugs,

Lore

Hi Hillary -

Just wanted to let you know that I'm keeping Holly (and you and your family!) in my thoughts and prayers today...praying for good results!  

-Shari

;)
Good luck Holly the Kid!!! :D

I go for my first post-op follow-up scan tomorrow too!

Plus they're going to take out my 17 staples and my stiches.

    Good luck Kid I know you'll be fine

Tom ;;D

Hilary-

I hope the MRI went well today.  My prayers are with you and Holly as you await results of your tests.

I wanted to let you know that a friend of mine brought me a copy of the New Braunfels paper today.  It was just GREAT!!  Tell Holly that she is a Shining Star!

To explain, Holly's story and picture riding her bicycle were on the front page of the New Braunfels, TX newspaper Friday.  The story titled - TRIUMPH OVER ILLNESS: Youth fights, beats rare brain disease; enjoys normal life - told her history and explained moyamoya very well.  So exciting to see an article about mm in a Texas paper!!  If anyone wants a copy, e-mail me your mailing address to:  mamacass11@msn,com  and I will mail you a copy.

Holly, you are on my heart and my daughter Kate's.

Hugs,

Cass

Hillary,

I pray that all has gone well.  I will keep you guys in my prayers and look forward to an update.

Michell and Trey

Thank you all for your thoughts and prayers, I am hoping that everything comes back normal.  We won't find out results for a few days i'm sure.  I do know that the MRI place is mailing a hard copy of the films to Dr. Steinbergs office for his review.  I'm not real sure what to think yet, my mom took her for the test today and said she did real well, there was a long pause in between a couple of the tests so that makes me a bit nervous.

Cass,

I don't think i've had the pleasure of meeting you yet, where are you from?  Thank you for the nice comments about the article, our goal from day one since she was diagnosed was to inform as many people as we can about Moyamoya.  Everyone I meet, I tell them as much as I can in hopes that someone will learn more about it, and that it might save another persons life.

Thanks again everyone
Hillary

P.S.

I also have extra copies of the article if anyone wants one, just let me know, and I havel also forwarded a copy to Dr. Steinbergs office, as well as other news media stations around Texas, and as well as "Talk Shows" and 60 minutes again.  I keep hoping that someone will pick up on the story and interview others from this site as well.

Hillary

Hillary:

I hope the results come back with good news and that you get them quickly. I just had some tests done recently and it took them Soooo long (it seemed) to get back to me. Just follow up with Dr. Steinberg quickly, so he looks at them and gets back to you!

I didn't realize you guys live in New Braunsfels! I love that town... The River is so much fun. I am in Houston.

Again, I hope all is well and you guys figure out the blurry vision... Is it all the time, or just before headaches?

Thoughtfully,

Sara

Hi Hilary-

I am quite new to the web and mm.  My daughter Kate who is 20 has mm.  Dr. Steinberg did her surgeries on 9/7 and 9/13 and she is doing very well so far.  We live in Dallas, TX and Kate is at school at Oklahoma State in Stillwater, OK.  She will be back in classes in Jan.

Keep in touch re: Holly.  She is on my heart.  I, too, and trying to get the word out to as many people and as quickly as I can.  Since we returned last week, we have given Dr. Steinberg's name and e-mail to four friends re:
mm evaluation.

Hugs,

Cass

:D initial reports show that the MRI has no change from the last one.  We are waiting for Stanfords review of it as well.  I heard back from Holly's doctor yesterday.  Thank you all for your support and prayers

Hillary

Hillary,

 [smiley=sayyes.gif]GREAT NEWS!!!! [smiley=thumbsup.gif]

I'm sure you feel relieved.

Hugs,

Lore

Great news!!! I know what a relief those words can be.Thanks for the update.
mary Grace

Hillary~

I haven't been on the board for awhile so wasn't onto all this.

I'm so glad things went well.

Love to you all,
Jack sends love too.
More HUGS,
Linda

Amen Hillary!

Thank you for sharing the good news (sorry, I'm a few days late :()  I just had an MRI/MRA done yesterday, so now it's my turn to play the "waiting game..."  I'm hoping for some good news too.  ;)  Have you heard from Stanford yet?

Please give Holly a big [smiley=hug.gif] from all of us and let her know how proud we are of her!

Take care,
Shan

Hillary - This is truly good news re:  Holly's MRI.  Keep us posted.

Hugs, Cass


Shan - Will be thinking positive thoughts and sending prayers to you re: your MRI/MRA.  Keep us posted also.

Hugs,

Cass

Shan, keep us posted on your results please.  No word from Stanford yet, but keeping my fingers crossed....on another note, Holly just got her grades from the first quarter.  Straight A's...and honor roll, perfect attendence and she met her reading goal for this quarter.

Thank you everyone for the thoughts and prayers..

Hillary