Monday, April 30, 2012

A Tribute to Leo by Tyler

Today is Leo's 2nd birthday. Tyler had to write 1 paragraph for his writing class. He could choose the topic. Any topic. He chose Leo. It just so happened that he wrote this paragraph today on Leo's birthday so I thought I would share it.

Loveable Leo 
Tyler Shafer 
April 30, 2012 
 Leo is an extremely cute and loveable baby. Because of Leo’s genetic syndrome, which is called wolf-hirschhorne, Leo has to catch-up developmentally. When Leo was put up for adoption, he was adopted by the Shafer Family. The Shafer’s were as lucky as someone who had won the lottery. Leo has lots of therapists which come weekly because they teach Leo helpful skills. Leo makes very cute sounds. We want him to talk but he has some speech difficulties. Leo is very loveable. 

 I love Tyler's perspective. He loves his brother. So often we are told by well meaning people that Leo is so lucky to be a part of our family. I LOVE Tyler's perspective- in his own words- he says- "The Shafer’s were as lucky as someone who had won the lottery." We are the blessed ones. So, if you want to know what it feels like to win the lottery consider adoption. You will be the one blessed as you forever change the life of a child who needs a family.

 Cake decorated by Amanda
 Leo and Pop-pop
 Leo standing guard over his presents!

Wednesday, April 25, 2012

Monday, April 23, 2012

cardio update

I have decided nothing is clear cut with Leo.  I left the appointment a little frustrated.  Here is what we know.  The hole has not closed.  It is not a little hole.  It is a big hole which means open heart surgery.  They will not do the surgery until Leo gains weight.  Children with wolf-hirschhorn syndrome gain weight slowly. So we wait. 

Because nothing is clear cut with Leo we left the office with Leo connected to a 24 heart monitor.  Apparently, they didn't like that the results of the heart monitor tests done in October and December don't agree so we are doing a third test.  The hole in his heart and the problem that showed up on the first heart monitor test are not related, so basically two heart problems but the second supposedly can be managed with medication.   

On a happy note ~ we go to court on Wednesday! 

Friday, April 13, 2012

Our day in Court!

We have a court date~ April 25th~ Leo will officially become Leo Moses Shafer! The last time I talked to our lawyer he said it would be at least another 8-10 before we even heard anything. We are so thankful for a fast date.

Time for some random thoughts.... Tonight I am home with the 3 youngest. We are having a movie and ice cream night. Last night, we decided that Jeremy would take the oldest 3 to the drive-in movie theater. Jonathan and Ben were actually excited to stay home and have control of the TV remote. It is good for the older 3 to get away with dad and have some time together.

Lately, I have been trying to figure out our family and how we can best function. I have had these rumblings in my brain for awhile, but I listened to a talk sent to me by a Pastor's wife/ homeschooling mom whose daughter has special needs. This talk put into words so much of what I have been thinking/feeling lately. She talked about finding her mission and that it was OK that her mission wasn't like all the other mom's. She talked about how her family functions differently then most out of necessity. And that is OK.

We are a family or 8, we homeschool, we have 2 children with special needs, one severe, we have a 13 year old all the way down to an almost 2 year old, who functions on the level of an infant in so many ways. So, why do I attempt to model our family life after those around us? We are different! And I am learning that is OK. There will be times when we tag team family events like tonight and that is great. It is so easy to get caught up in the comparison game. To think- I should be serving more, I should be doing more, my kids should be doing such and such, goes against the idea that God has called me for a special mission. For this season in life, there are times we go into survival mode- like this past week. There are times, for us to do things - all of us together and there will be times when we divide and conquer. I am still trying to figure out- how my mission of caring for my 6 children - translates into daily living, but I guess the first step is accepting that my mission will look like no one elses. And that is OK.
On Wednesday, we met with the genetics doctor. We now have the full scope on Wolf-hirschhorn syndrome. That is a post for another day, we are still digesting a lot of what was said.

Saturday, April 7, 2012

Aspirating, seizure, and a hovercraft

Just when you think you can let your guard down, God reminds you just how fragile life really is. Especially life with Leo. Thursday afternoon, Leo had a febrile seizure which landed us in the ER. He was diagnosed with pneumonia.

For the last 2 days I have been trying to figure out how he could have pneumonia when he really has no symptoms. Tonight at dinner all the pieces came together in my mind. And yes, I am one step closer to getting my medical degree. I called our feeding specialist (yes, I called her the night before Easter and she was wonderfully understanding) who confirmed my diagnosis. We believe Leo may have aspirated on some liquid during his spoon dipping feeding. She had told me months ago that it is possible to aspirate on something, have it go to your lungs and result in pneumonia. There is no way for us to know 100% if that is what caused Leo's pneumonia but it seems likely. So, next step will be a swallow study. I will attempt to schedule this next week and will hopefully be able to get an appointment in the next month or so.

Jeremy posted this on facebook today- We have been praying as a family that Leo's ASD (Atrial Septal Defect) would heal without heart surgery. Today, Jonathan observed me putting a band aid on Ben's finger. Jonathan said, "Daddy, you could put a band aid on Leo's heart!" Would you join us in praying for the hole in Leo's heart to close. We go back to the cardiologist on April 23rd. We are praying for a miracle- that the hole will close, if not we will need to talk surgery options.

In other news, Jeremy and the boys made a hovercraft.

Sunday, April 1, 2012

Daddy's little girl

My little girl is growing up. It is so hard to believe that she is 13 and a beautiful young lady. This picture was taken at our church's father daughter dinner last weekend. Amanda will always be her daddy's little girl!

We love you, Amanda.