Willow's Wishes

Does one even need to keep track anymore? Does the number of times being in the hospital with a lifelong illness even matter after a while? Some will probably say no, it doesn't matter - but let me tell you that when it pulls you away from the rest of the family you love and you are left all alone in the hospital room at night with things that are meant to bring comfort but instead bring back memories of long stays - it matters.  So we brought her in based on the wisdom of her pediatricians on call nursing staff.  She has had a fever since Thursday anywhere between 100 up to 102.4.  Of course we get here and she has no fever (go figure), but after speaking with the on call neuro team (which I usually despise), we decide to try a shunt tap and see if we can get a cell count.  Unfortuantely we were not able to pull off a bunch of fluid due to her tiny vents (as he said); and so they are instead sending it off to see if a culture comes back positive.  So to be sa...

So this summer I have tried to keep busy in the name of the Michigan Pediatric Hydrocephalus Foundation, and I think I have met that goal! June we had an event at Chuck E. Cheese, July I did an event at Buffalo Wild Wings and my co-director has a huge event planned at the end of this month as well!  He has teamed up with the Beautiful U Salon in Lapeer and has a family fun day/cut-a-thon planned from 2-7 on July 27th!  I was hoping to make it out there for support, but alas my work schedule has changed and now I work on Friday's from 1-8. August our family has a couple of things planned... The PHF has its 2nd Annual Day on Capitol Hill ( www.hydrocephaluskids.org ) planned for Aug. 24th and after a few discussions with Jon; we have decided that our family wants... no needs to be there this year.  We really feel that I am being allowed this time to teach others about hydrocephalus.  It is not the type of teaching I had wanted to do in my life, but it is te...

So the foundation I work with, Pediatric Hydrocephalus Foundation will be doing a day at Capitol Hill next month (here is the link for more info: http://www.hydrocephaluskids.org/wordpress/ ), and our family is very excited about this endeavor.  We are working hard to raise funds to be able to go on this trip, and our first plan didn't make it off the ground unfortunately.  So now we are trying our best to come up with some other great fundraising ideas in a short time frame!  I feel that I have been called to go on this trip, and I am continuing to pray that I am following the correct path... The road was never promised to be easy, and I am trying to remember that and not get too discouraged!  Our plan for a fundraiser is to have a yard sale! We are asking all of our friends to clean their houses and donate items to us that they would like to get rid of! :)  Any money we make we will use to get us to DC so that we can speak to congress about hydrocephalu...

We have almost completed our first full month of summer vacation!  How has gone? Well, not without bumps of course, but not really with Willow.  We have been able to avoid a visit to Helen-DeVos Children's so far (of course I say this while knocking on all things related to wood in my house)! We have had her post-op appointment with her neurosurgeon, and he feels she is doing well (as do we really), and she has had her WIC appointment, and despite being called a 'tiny peanut who is taking after mom' they feel she is doing fine, and she has also recently had her 18 month check up!  Can you believe she is 18 months old already?! She has finally broke the 20 lb mark, by 8 oz!! LOL  She still had her diaper on, so that is 8 oz. there but at least she is 20 lbs now.  She is 30 inches long, so a bit on the short side, but we do have some short grandma's too. The other kids are still having a hard time adjusting to being home and allowing Willow her time to rest...