Ladybug Secrets

Ladybug Secrets:
Don't let the small stuff bug you. And Spot new opportunities.

Tuesday, December 21, 2010

A Year of Blessings

No Christmas cards this year, but that does not mean we are short on the Christmas spirit!  What an amazing year we have had in the Crown house!  It has been a year full of many blessings.  I know I have shared many things on this blog, but many I have not.  The Crown family year in review....

We started off 2010 with me being very pregnant.  We were all excited for our new bundle!  Chandler Joseph Crown was born Sunday, February 21, 2010.  He was beautiful, and the new light in our lives!  When God gave him to us, He knew the year ahead.  Chandler has dealt with every trip, illness, and life change wonderfully! 

As many of you know, my grandma and my mom's family lives in Colorado.  Unfortunately this is not only a long trip but a pricey one.  The kids just love going to see great-grandma.  We really did not see how this would be a reality this year.  But with the help of my parents and some other good things happening, we were able to go to Colorado in June.  We road Amtrack!  What a journey...My mom, dad, brother, sis, me and all 3 kiddos.  Parts of it were amazingly stressful, but completely worth it!  If you have extended family close by, treasure it!  Aidan asked me as we got on the train why I was crying.  I told him, "Because mommy never knows when or if we will be coming back."  What a gift to be able to spend a week out there!

As soon as we came back we unpacked and packed again for Brooke's doc appointment in NY.  We went to this appointment thinking she may need surgery on her spine in the next year.  So as I sat in that chair and listened to Dr. B, I was totally unprepared.  He explained about her Chiari getting worse.  So I just leaned forward and said, "What are we saying here?"  Brain Surgery was the answer.  The next few weeks were spent preparing for Brooke to have surgery on August 10 in NY. 

On August 10, Tim, myself, my mom, Aidan, and Chandler waited for 8 long hours while Brooke was in surgery.  She came out of it with flying colors.  What a strong lady she is!!!  The next few days were not easy for anyone.  Many tears, and cries of pain.  Brooke refused medicene so this made things worse for awhile.  Thank God for her brothers!  Brooke looked forward to their visits in the playroom.  It forced her to get out of bed and move.  She smiled, played, and started healing.  What a blessing that we could be together as a family. 

We were in NY for 2 weeks before heading home.  Nothing about Chiari is easy.  Every day is different.  As I write this, Brooke is having a bad day.  She is just laying on the couch, to tired to move.  What makes it a blessing?  She is here, she is relatively healthy, and she has some amazing days!  We still have a long road of tests, doctors appointments and possible surgeries.  But we have been so blessed on this road.

 Brooke has had the chance to make a friend here in Canton that has Chiari.  Her and Danica are little heroes to their families.  We are so blessed to have been brought together.  The 2 girls now have someone close who understand, and us mommies have a friend to lean on.

This year has also brought many illnesses for Tim's grandparents.  They are both doing better now!  This is a miracle and we are so thankful for the time we have with them.  We are also thankful for the chance to have Tim's Aunt Amy, who I am now guardian for, spend Christmas with us!

Another Blessing this year was that through this tough economy, Tim and I have manage to stay employed! :)  Thank goodness for work.  And I feel extra blessed because of all the little rays of sunshine I work with every Sunday! 

With all this craziness we added a little more!  This was Aidan's 1st year in 4-H!  He did great.  Aidan and Brooke were also in the Little Theatre Troope this year.  Aidan was a mouse in the Spring Production of Cinderella.  Brooke and Aidan were Cats in the Fall Production of a Purrfect Christmas.  We have also continued home schooling.  Aidan is in first and Brooke is working on Kindergarten.  We are having so much fun!!!

There are so many things I could tell you but here are just a few of the numerous blessings that we thank God for this Christmas:  All of the people who helped us get to NY and stay there as a family, the Ronald McDonald House for their amazing service to people, All the docs and nurses who cared for Brooke at Long Island Jewish Hospital, Dr Bolognese- unending gratitude for his gentle and loving care of our daughter, the wonderful man who repaired our van while we were away (it was on its last leg!), our church family who prayed without ceasing, the families who made the Chickfila benefit happen, the family who helped me set up this blog and then supports us through Bags for Brooke, all the people who have had home parties to help with medical bills, friends who have cared for Aidan, all the people who made meals for us, family that have stepped up many times to help, the amazing people who made Christmas a reality for our children this year.

I am sure I forgot someone...we love you all and thank you for a year of blessings!!!
Merry Christmas from our 30 little piggies to you!!!

The Crown's: Tim, Melinda, Aidan, Brooke, Chandler, and Ranger, too!

Monday, December 13, 2010

Some Time to Adjust

Wow it has been so long since I posted.  I wish I could say our lives are back to normal, but that is not true.  I think this weather is extra hard on Brooke.  Today was not good.  She woke up sore and spent most of her day just not up to doing much.  I always feel so sad when i have to drag her out of the house when she feels bad.  I am thankful she can go to my mom's while I work.  At least it is close to home.

We are trying new things at our house in hopes that Brooke might get some relief.  Our family has started to eat differently.  I have been reading that some people with Chiari benefit from a gluten free diet.  So, as much as we can, we are cutting back on gluten.  Tomorrow she is going for both an Occupational and Physical Therapy evaluation.  We have learned new ways to try and defuse the fits she is having.  She still has them but not as bad.  I have figured out a few triggers.  Noises is a big one, and so is touch.  For example, the humming from lights, and the chatter of people talking really bother her.  Plus if she is not feeling well, even touching her hand makes her scream.  So if I see her getting upset, I use a soft voice and then warn her that I am going to touch her hand. Another thing I have found is she needs to understand what could possibly happen in each place we go.  If we are taking a trip to Walmart, I need to remind her it might be loud, there will be a lot of people, it might smell, she might get tired walking, the cart might be bouncy, the cart might hurt her bottom, it might seem like we are there a really long time, it may be hot, it may be cold, etc, etc.  Yes I go through list like this everywhere we go.  I have started to write things down to help me remember.  Plus as I notice triggers, I write them down.  This has helped quite a bit.

We are not sure when our next trip to NY is.  Her neurosurgeon wants us to pursue a urologist who will help us.  I am not sure how to even find one.  It is not like you can call them up and say, "Do you feel my daughter has a neurogenic bladder?  If you do, could you please write this in her chart without putting her through more tests?  Oh and could you do this before her brain is pulled back out of her skull cavity? Thanks!"  We know that even with the surgery for Tethered Spinal Cord, Brooke may still be unable to potty train.  We also know that she may still have issues with balance and pain.  But if it might help...we just want to help her as much as we can.  She is already becoming wobbly again.  She has fallen down the stairs twice now.  She almost fell down our basement stairs, but I grabbed her collar and caught her.  This terrifies me because our basement stairs our wooden with a concrete floor at bottom.  Plus this is how we enter and exit our house.  I have told Brooke and Aidan that Brooke is not allowed to go down the stairs first.

I know this post is a rambling mess, and I thank you for reading past all of it.  I am typing while holding a sleeping baby! :)  My legs have now completely fallen asleep.  I love looking down at a dreaming little face!  I will post again soon.  Just wanted to get an update out, since many have asked how things are going.  Thanks for all the prayers!
Merry Christmas!!!!