Friday, April 12, 2013

April, 2013

 
It has been way too long since we last posted anything.  The end of last summer was the last, and soon it will be summer again.  It is April yet we still have snow on the ground with more to come!!  We have had a great year and the kids are growing like weeds.  Adina will soon finish her Kindergarten year and she reminds us everyday that she is ready for summer break.  Oliver started school, which was exciting and terrifying for mom!  I paced the floor and looked out the window for two hours until I saw the bus come back.  His nurse made the trip with him so I knew he was safe.   He is back to home based therapy for now and I will explain in a bit.  Coraline is as busy as ever and will soon be three.  She wants to be just like Adina and asks Adina everyday if they are best friends.  Phinneus is a wild man and if he makes it through the day without crashing into something it has been a good day! Oliver update since August is that he has been FANTASTIC!!!  We have been struggling with multiple broken bones, which is not great, but we knew at some point this would happen.  I was at work for a 12 hour shift and a newer nurse was working.  I came home, crawled in bed with Oliver and noticed his leg looked funny and Oliver was crying.  I had just gotten home from Gillette and we turned right around and went back to Regions and then Gillette.  Because it was a Femur break and those bones are usually hard to break they had to do a skeletal survey to see if there were more broken bones or any signs of abuse.  I was a wreck and thankfully a dear friend came down from work to sit with me.  They did find another fracture in his spine and a healed fracture in his arm.  At this point it was the middle of the night and we were finally going up to Gillette.  We were not allowed to leave the hospital until we met with a doctor from Children's hospital who investigates suspicious events to determine if Child Protection should be called.  Obviously our doctors were behind us as Oliver's bones are very thin but we had to do it.  I felt like everybody was looking at me like I was hurting my child.  Also uncomfortable because I work at Gillette.  The doctor talked to me for about an hour and after reading some notes from the homecare and talking about the day it happened he said he had no suspicions about our family but about the nurse who was working at the time (John and I were not home that day).  He wanted us to look into it more, he didn't feel like he had enough proof to go forward with anything but was VERY suspicious of a nurse.  I don't know what happened, I have my own thoughts but I am not going share.  Whatever it was I believe was an accident.  Since this break we have had numerous re-breaks while in the cast because he moves so strongly and was re-casted multiple times and when he came out of the cast for the femur his lower leg, tib/fib were broken, which is the picture below.  We finally got him out of a cast and into braces, and again I came home from a 12 hour shift and the following day realized another femur break.  Back in a cast called a spica cast, which is like a half body cast.  Now his right leg is starting to have breaks and onto the next battle.  He has started infusions to strengthen his bones but we cannot do another round until the current breaks heal.  With all of this going on Oliver has been the happiest he has been, ever!  It has been so much fun to have him singing and yelling in his Oliver way.  I laugh when people come over and give him that sad "poor Oliver" look, which is most people besides the nurses. I don't think people even realize how obvious it is and I just want to direct the look right back. They have no clue of the joy Oliver has being with his family and the miracle he is.  We don't pray for a miracle because Oliver is a miracle!  I pray for him to not have pain like I pray for the other kids to not have pain when they are sick.  So, we are dealing with the bones and life goes on.  We are blessed to have Gillette close by where the doctors understand the Oliver's of the world and respect our wishes for Oliver and our family.  We still have 24 hour nursing care for Oliver which is a blessing most of the time.  Except when we want privacy and have none.  I have become a very blunt person and often times have a strange sense of humor and John is the same, just not as blunt.  The best thing about working at Gillette is I am surrounded by family members who are just like me and I realize that I am not alone!  So that's the update for Oliver, life is good.  Stop by and say hi to Oliver any time, he loves company as long as nobody is sick! 
 
 
Adina at her science fair, she looked so excited!!

Oliver is big pimpin in his new glasses.

Fun in the snow, snow that will never go away!

Phin man.

Oliver gets 100's of kisses from little sis.

Painting time.

So big, literally.  SO BIG!

Pretty little ladies.
1st day of Kindergarten!

Ms. Cora.

Time for the bus.  Is mom a mess?? Yup!

Another break or two.
At school!
1st day of preschool, let me go mom!
 
 

Wednesday, August 8, 2012

Changes

This may be the biggest shocker of the year......we moved again!!  This should be the last time that we move for hopefully many years.  John and I bought a house in Oakdale (on the eastern side of St. Paul) and have put our nomadic lifestyle to an end.  Here is a recount of all the places we have been in our eight almost nine years of marraige.  1.  Brooklyn Park  2. Uzbekistan (Peace Corps) 3.  Minneapolis (only a short stay)  4.  New Brighton  5.  Minneapolis  6.  Maplewood  7.  Lauderdale (second floor apt)  8.  Lauderdale (down to first floor apt)  9.  Roseville  10.  Lauderdale (back to student housing)  11.  Oakdale!! 
The kids are loving the new house and Adina will be in Kindergarten!  There are many kids in the neighboorhood and we feel blessed to have found a wonderful house that suits all of our needs, especially Mr. Oliver.
Speaking of Oliver, we discharged him from Hospice!!! (again)  We are hoping that this time it is for a very long time, but we have learned that anything can happen.  It was a bittersweet goodbye as we have become so close to our fabulous hospice nurses and team.  There are so many people that have become part of our family through this journey and we will never forget any of them.  We also sadly had to leave our school team who has been with Oliver since he was 5 months old.  These were the people that always focused on what Oliver could do rather than all of the can'ts that the rest of the world has always put on Oliver.  His new team will be great but Roseville will always hold a very special place in our hearts.  We are planning on sending Oliver to school this year, hopefully 1-2 times a week.  Yes, he will get sick, but what kid doesn't want to be with other kids? 
I spoke with a group of new nurses today at Gillette about what it is like to be the parent of a special needs child.  As John and I made the power point together of all the pictures of Oliver throughout his short life we relived every emotion from the day he was diagnosed.  It has been such a roller coaster that will continue to have the highs and lows and loop-de-loops.  Oliver has taught us all so much and the kids are so proud of their brother.  Adina is worried that Oliver is going to wrestle too hard at school because that is what boys do, they wrestle.  Cora has decided that when Oliver is in his wheelchair she is going to sit in Olivers lap for the free ride.  She is becoming his new protector.  Phinneus is oblivious and loves his tubes.  Oliver is a celebrity in our household! 
Nothing else new here, just enjoying the last few weeks of summer before I send my two babies on the school bus!!  That will be a rough day for mom!

Phinny-9 months


Oliver got out of picture torture as he was asleep.  He is a clever fellow.



Pooped out from the long drive.  Cora and Phin often hold hands in the car.


Cousin Arne helping Cora with her hat.

 4th of July cuties!



 Kisses for Oli.



Cheesy!!



 Papa and Phin.

"Help" from three painters.


Very thankful for all of the help from Uncle Scott who can fix anything!!


Adina got to help paint her room, yup, it's purple.  She is pretty excited!
 
Help from mom who painted all week alllll day long.  Thanks mom!!  We did not keep the blue walls.

Finally celebrating Oliver and Cora's Birthdays.  Phin was taking a nap, as was Oli, wearing his pirate's hat. 

Oliver got a glitter lava lamp.  Party central in Olivers room!

Snuggle with cousin Charlie, Grandma, and Adina. 

Hmmmm... I stepped away for a few minutes and Cora came to me looking like this.  What great helpers big sisters can be.  This was not a fun bath!!


Tuesday, June 26, 2012

Little Acts of Love

We were outside today and I had a good reminder of how happy little acts of love and kindness people make.  The kids were playing and we heard accordian music.  There was a man practicing his accordian up on the hill so we went and listened to him play.  Oliver was LOVING the music.  The man was carefully looking at Oliver with a concerned look.  When he realized Oliver was enjoying it, he came closer to him.  We started talking and we learned a little about him and he learned about Oliver.  We decided that Oli was a strong name.  He had a cousin named Oli who lived to the age of 100.  This man plays in a group and they wear bells on their legs and play English dance songs.  Before he left he put the bells on and demonstrated his dance.  Adina and her friend were giggling away and everybody was happy.  (Cora stood further back with her very serious look unsure of the whole situation.)  He didn't have to keep playing when we interrupted his quiet practice time, but he was a very kind man.  It is hard for people to see if Oliver is enjoying himself, but I know.  It was a very special moment.  Music is Oliver's favorite thing and this man was just there.  Little acts of love.
Oliver also got to go on a little hike today with me and the girls.  The chair is not easy to push up a gravel path, but we made it!  John is still patiently waiting for a call.  Oliver is doing well.  Early in the summer we were told that the medication Oliver uses to sleep in no longer being made.  John and I were ready to cry.  We are trying a new med and it is okay, but not as good.  Oliver went through withdrawal of course and had a rough week.  Adina gave herself a haircut, not a good one.  It was in her eyes so she just took care of it.  She had her dance recital and looked like a little beautiful little swan (or bull in a china cabinet).  Coraline is talking up a storm.  The first letter of the words truck, bucket, walking, and monkey are all replaced with an F.  It is something that we are excited for her to outgrow!  Phin Phin continues to be our little chunk, happy as can be.  He loves his siblings more than anything.  Happy 4th of July.
Cold ice cream!


                                        Looking for fish.

                                          My first haircut, kind of. 

                                      My pretty little swan waiting to dance.

                        Phin Phin happy as can be.  (Little John)

                                                              

                                 Open up! Give me ice cream!

                       Snuggle time with Grandma.

                               Walking in the woods.

                            Beautiful Cora with her serious look. 



                         Accordian Music.  He was such a kind man.

       Hiking time.  These two trails always remind me of my favorite poem by Robert Frost, The Road Not Taken.

                       Who says a kid in a chair can't do stuff!



Our last dose of Chloral Hydrate.  You will forever be missed wonderful sleep (and sleep meds).

               Phinneus and Great Uncle Doug. 

                   Cora and Grandpa Dave. 

Adina dancing at John's cousins wedding, dancing with her cousins.  Do you think she
was having fun?


              Phinneus showing off his abs!  My little stud muffin!