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Friday, May 21, 2010 - 8:37pm

Hopefully I don't jinx anything here, but Hailey is doing really well right now.  After the first couple hours of a lot of crying and tantrums, she has settled down and is acting just like her old self.  She is calm, eating and drinking, saying funny things, and seems to be generally fine.  Her head and her tubie area are sore, and she hates all the chords hooked to her, but even those things don't seem to be bothering her at the moment.  We are definitely heading in the right direction and things are going about as well as we could have hoped at this point.  Lets hope we can say the same thing tomorrow after the rest of tonight. 

Saturday, May 22, 2010 - 10:43am

The night went pretty well all in all.  Hailey's a little crabbier today, but is doing very well still.  She just ate a big bagel with cream cheese (her first significant food).  She's waiting patiently to see her big sister and her cousins (she's been asking for "Faithy" since yesterday).  Bottom line, we're on pace to go home tomorrow.  She'll be lying low for a week at least, but things seem to be heading in the right direction.  I've been reading many of your messages to Hailey and they have made her smile.  Thanks for all the thoughts and prayers.  You all give us incredible strength. 

Sunday, May 23, 2010 - 11:36am

We're going home!  Leaving Madison in a little bit. Hailey is doing well.  She's healing and still getting used to the new feeding tube, but appears to have bounced back to herself mentally and physically.  Thursday we will get out the stitches and it sounds like we will be able to resume chemo Thursday as well.  So in a few short days we'll be back here again, but we are very very thankful for how this all turned out so far.  We will not find out until our next MRI whether the ventricle procedure did what we needed it to do.  The feeding tube will help us immediately, however, as while we work on trying to get her to take things orally, we'll be able to give her the growth hormone medication every day now (and any other medications she will need) and we will begin giving her good supplements to her daily nutrition. 

Tuesday, June 15, 2010 - 7:09am

I know we haven't updated in a while, but things are fine on this end.  Hailey has adjusted to her feeding tube and she fully recovered from her venticle surgery.  We're just using the tube for medicines and supplements...she still eats her regular stuff as always.  She's doing well all things considered.  We continue to do chemo treatments every Thursday.  Next MRI will be in July and will hopefully give us some indication that the chemo is doing it's job.  We will also be able to confirm that the ventricle procedure worked as well. 

Faith finished kindergarten a couple weeks ago!  She did great.  We got lucky in getting an incredible teacher for Faith's first official year in school.  It made her experience that much better and was a big reason why Faith loved it so much.

So we're off to our summer routine.  Let the fun begin...

P.S.  We went to Bay Beach last weekend and Faith and Hailey both went on "The Scrambler" and LOVED it.  We couldn't pull them off it...especially Hailey. I see rollercoasters in our future (real ones...not the one we have been riding on for the last 3 years!)  And by the way, June 6th was the 3rd anniversary of Hailey's diagnosis.  It's been 3 years already!  Feels like 30.