Willow's Wishes

Well, the West family is back from our vacation to DC.  There was so much planning, prepping, fundraising, packing, driving (LOL) that went into this trip.... but it was a huge success! :)  Alas, with every trip there are ups and downs and speed bumps that are meant to allow for a deeper look into what is going on.  So, I will try to share with you the whole trip, without boring you too much as well. :) Wednesday was the day we set to leave, when I went to work that morning we still had a rather large to  do list as well.  Such as pack the food, grab the phone cords, get a wheel alignment.. You know the basics! Well the wheel alignment was the first of a few speed bumps given to us.  You see, there was more wrong with our car than just what I thought, so to make the details short... $200.00 later, and 4 hours after dropping it off we had our car again at 4 pm.  Well, I had hoped to leave no later than 3 that day, so now I was trying not to get on edg...

The excitement is growing in the house (well it is with me at least!) The kids have their count down to when we leave, but I think they are almost slightly reserved about it until we are in the car and going - life has happened in this house on more than one occasion to where we have said we will go somewhere and then we can't.  So I can understand their hesitation, but I am here to tell the world that WE ARE GOING TO DC IN 3 DAYS!! :) So, ultimately we are as of today only a couple hundred short of the bare minimum it was going to take to pay for gas and hotel to get there.  The closer to that amount we get, the more freedom we have to eat out, sight see and come home with a surprise or two for the kids and the less that comes out of our own pocketbook.  We feel so blessed in so many ways today as we realize how our friends and family have helped us reach our goal. Aside from our own yard sale (which was rained on 2 days in a row), we had a friend do a yard sale and ...

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...

Well we are about 2 weeks into summer vacation with all the kids being home, and we are still trying to figure out this adjustment! Strange really, how hard this is on us, but I will give you a few examples... The older children who are used to summers where mom has been more laid back and flexible with bedtimes are having a hard time adjusting to the fact that bed time has not changed from school time to summer time (I used to let them stay up until the sun set), but alas, I have a job that has me working in the morning and an 18 month old who still wakes up to nurse in the middle of the night at least twice.  So this mama needs some sleep!  The other thing is, the older children do not know how to keep quiet voices in my house when Willow is in need of a nap... So we are having trouble with that as well.  The kids don't seem to be having trouble with keeping themselves busy either with computer time, outside time, fighting time (what bunch of siblings doesn't enjoy a ...