Willow's Wishes

Ahhhh Friday evening we meet again.  I just wish that all my children were asleep right now at 9 pm instead of only the baby; but what can you do??   Well, Jonathan spent the last couple of days at camp with his class, and he came home all smiles, and filled with stories (and who wouldn't?!)  Short of it all, he had a blast and did a great job at the talent show (will have to check with Jon to see if he took pictures or a video of him last night).   Evan and Amanda are doing well in school, and still trying to navigate their way around life at home when it comes to respect and caring etc.  But I have faith that we will one day all respect each other in the way they should! LOL  Really it isn't that bad, after all I don't believe it is any worse than the things I did to my brother as a child, so I guess what goes around comes around in one way or another! :) Willow the littlest star of the family... she had therapy today with Ken-O-Sha and today w...

Well I have finally uploaded all the pictures from my phone onto the computer, so I will pre-warn you all that this may be a picture happy blog post.. :) A beautiful Michigan fall day. I could not have asked for a more beautiful sky, a warm fall sun, and a light breeze to frame the day.  We had to go collect the pies that Jonathan had sold for school, so that was the first morning task.  Then start the phone calling and delivery process of said pies.  That took us on a drive! I kind of mentally planned for this so it was not too much of a bummer. In fact it started what became an awesome day.  We delivered pies to a couple of our friends and family, and then stopped at Culver's for an ice cream treat.  While the kids were eating their snack, I began to think about how thankful and blessed I am to have my children today.  I was then sad for Larry and Rachelle and the weekend they must be having in comparison, but it was while I was thinking of them, ...

My thoughts and prayers are with a grieving family tonight as they said their final good byes to their baby.  One year old Colton Jaymes Haus lost his battle with Hydrocephalus today.  I have not known the family for long as I have said in a previous blog, but when you share a bond of a child with a disability you become friends rather quickly.  We had many conversations on facebook together, and I was lucky enough to make it to the hospital a few times to see him.  I got the chance to see him smile, and hold his hand.  There is nothing in the world like a little baby's smile. And I have to say Colton had a great smile!  He was very blessed to have some incredible parents as well.  They are two very strong people, who fought for Colton every day. They did not give up the first time when the doctors told them a year ago that he would not make it past the heart surgery. He did though.  He shared an incredible year with his parents and gav...

Yup, we have been home now for 3 months! Life has begun to have some sense of normalcy again; especially with all of the other kids school events and scouts and such.  Oh my word are we busy!!  But Friday was a bit of a struggle for me as I began to get phone calls to make a few appointments.  I kind of forgot that her neurosurgeon wanted an MRI done this month, and Friday I got a postcard from his office stating we need to make an appointment... Hmmm what for??? Well, we have the MRI scheduled for Nov. 4th, and Willow will have to be sedated for it.  That really scares me!  Yes, she has come out of everything else just fine, but it only takes one time really for anything to happen and so many of us adults know and understand that.  Before we can do the MRI though we have to see her pediatrician so that she can be cleared for this upcoming sedation... hmmm, sounds even better really.  (note sarcasm) Tomorrow she will be going back to the pediatric ...

Tonight's post and thoughts go out to a family we know.  I don't really know them all that well actually; I was told about the father through my friend who works with him, and decided to reach out to them.  You see this family has a little boy not much older than Willow who also has hydrocephalus.  He has been through much more than Willow has in his young life as he also has gone through open heart surgery when he was only 2 months old!  This is one tough little boy. Well, this last week has been a roller coaster of all roller coasters for this family.  He had only been home a little over 2 weeks since his last surgery when his mom took him to the pulmonologist and was told that she could start to wean him off of his oxygen!! What great news!  I know when I read that update on facebook I was on cloud 9 for them.  Well, the next day he woke up but not really... She was supposed to take him to another appointment and instead mommy intuition had her ca...

Oh what a time it has been!  It has had its fun and its not so fun times as I suppose anyone's 9 month time span would.  A quick refresher just to put all of it into perspective... Willow was born on Dec. 24th (cannot believe it is coming up so quick!), and just 2 1/2 months later was diagnosed with Hydrocephalus ex vacuo, meaning she had hydro due to a lack of brain matter. Then at 4 months and 2 days old, was placed into the operating room for an emergency surgery to have a shunt placed. 8 surgeries and 11 weeks later, we finally get to go home.  We have been home for two and a half months, and have been going to therapy a whole lot! Well lets fast forward to today: She is 9 months and 2 days old, and we went to the pediatrician's office for her well child visit.  The stats are: 15.4 lbs, 26.25 inches, 45.5 cm head circumference. She is our tiniest little peanut yet, but that is okay because what she lacks in size she makes up for in spunk.  She is com...

We finally got to take Willow to the neurologist; and I say finally with tongue in cheek.  This appt. was made back in March for Aug, then changed to July, then moved to Aug. again, where I show up to be told we actually did not have an appointment. Yeah less than thrilled with the office to say the least.  But today we finally get in and actually the doctor was great!  He showed me her brain scans and explained what I was looking at, which was great because I have her scans on a disk myself, but lack the medical degree to actually understand fully what I was looking at! So, her lateral ventricles were huge! Her third ventricle also large, while the fourth was only slightly larger than normal.  Basically her body was making its normal amount of fluid as it should, it was just having trouble draining.  Her original diagnosis of hydrocephalus ex-vacuo was completely wrong! She does not suffer from any white matter loss!  Woohoo!! Huge dance of joy!  Ob...