What a day :/

I am so proud of Meghan with the progress she has made since her shunt was put in.  She has come such a long ways and has accomplished so much.  But, she has good days and bad days.  Today was a rough one.  One of Meghan's biggest issue is her balance when walking.  She's been walking for almost a month now, but she falls often.  This is because her CSF flow is blocked and the CSF can't carry the correct balance and coordination communication from the brain to the rest of her body because it's blocked.  Everytime she falls my heart aches for her more and more.  She gets so frustrated.  She has overall low muscle tone, but especially in her shoulders and arms.  When you fall, your arms should come out and prevent you from taking a complete spill.  Sometimes Meghan is able to catch herself, other times her arms will collapse and doesn't catch her fall, so she lands on her face or head.  This is the worst feeling.  Today was probably her worst day as far as falling and she had a few big falls.  These are the kind of days where I wish her surgery was tomorrow instead of a month away.  I try my hardest to let her be a kid and explore her surroundings, but I wish I could just wrap her up in bubble wrap :) 

But.....tomorrow is a brand new day and we'll start over tomorrow!

:)

The shirt order is officially submitted!!!  The order is for 60 shirts (WOO HOO!)  :)  I am such a happy mommy :)  None of this would've been possible if it wasn't for our amazing family and friends!  A HUGE thank you to everyone that ordered shirts or wristbands!  With the money we raised from the shirts and wristbands, we will be donating $288.00 to the Chiari and Syringomyelia Foundation, $122.25 to the Hydrocephalus Association and $122.25 will be going to the 2013 Team Meghan hydrocephalus walking team.  This will then be donated to the Hydrocephalus Association on behalf of Team Meghan at the 2013 walk.  In total, we raised $532.50 which will be donated to two hard working organizations doing research to find a cure.  Amazing!

I will be enjoying this quiet week, as it seems after this week, we start our list of doctor appointments before Meghan's surgery.  Meghan will have PT and OT on Wednesday.  She had a break last week for Thanksgiving and will be hard at it again this week.  A few things her therapists are working on with her are feeding herself with silverware (this is a huge struggle), building strength in shoulders, pulling herself to the standing position with no support.  Meghan is very resourceful and will look for anything to help her get to the standing position.  Meghan has a team of 3 therapists that come to the house each Wednesday.  She has 3 more weeks of therapy and then will be done until the end of January or early February, depending on how her recovery goes.  These girls are so dedicated to Meghan.  They told me two weeks ago that they would like to come and visit with Meghan when she gets home from the hospital and is well enough for visitors.  I am so thankful for their patience and dedication to Meghan.

Happy Thanksgiving!

We would like to wish a very Happy Thanksgiving to all of our wonderful family and friends!  We have so much to be thankful for this year!  For those that are traveling - safe travels!

This year, Luke will be spending Thanksgiving with his Dad in Missouri with the extended Suess family.  He left on Tuesday night and will be back on Sunday evening.  We will miss him!  We are going to my Dad's for Thanksgiving lunch and will be having my mom and one of my brothers and his new wife over for Thanksgiving supper.   I absolutely love getting together with family, sitting around the table eatting wonderful food while sharing stories from the past.  We will be missing out on spending the holiday with Jeff's family in Iowa, but we will see them in a few weeks for their Christmas.

We took advantage of the very rare warm weather last weekend by putting up the outside Christmas decorations.  I'm sure glad we did it last weekend as the high for this weekend is 30 degrees and blustery!  We will put the tree up on Friday and I can hardly wait to see Meghan's face when she sees it lit up! 

Happy Thanksgiving, everyone!!!

Brotherly Love

Luke and I were outside doing yard work this past weekend and out of no where he said to me, "Mom, I pray for Meghan all the time at school.  I pray every day that she doesn't need to have anymore brain surgeries."  It took me a few seconds to answer him back as I was fighting tears.  I told him that that was a very nice and thoughtful thing of him to do and that God listens to our prayers and that he does his best to answer our prayers.  This little boy is a total boy to the core, but he has the BIGGEST heart, especially when it comes to his sister.  A few days after Luke told me this, I got an email from his teacher letting me know that she was touched by Luke's daily prayer about his sister and how he prays she doesn't need anymore surgeries.  God has blessed me with two wonderful children and I'm so honored that I was chosen to be their mom!

We have a walker!!

It's official...Meghan is a walker!  She, of course, is thrilled about her new found skill, as are we!  She's been walking on and off since the middle of September, but this weekend, she decided she wanted to mostly walk.  She is such a big girl now :)  Each day she gets better and better.

I also have pictures of shirts that we are selling in honor of Meghan.  I am going to attempt to post the pictures on here, but I am so new with blogging that I am very unfamiliar with posting pictures on here, but will give it a try.  Here's some info on the shirts:

Tshirts - $18
Youth S, M and L
Adult S, M, L and XL

Sweatshirts - $22
Youth S, M and L
Adult S, M, L and XL

Hooded sweatshirts - $29
Youth L only
Adult S, M, L and XL

The shirt with blue lettering is hard to read since it can't be enlarged.  On the front of the shirt, it reads I wear a ribbon in honor of the survivors, warriors, caregivers, the families and for the lives lost.  Support Hydrocephalus Awareness.  The back says Team Meghan and has a 2 tone blue ribbon that says Hydrocephalus on the ribbon.

We are also selling silicone wristbands for $3 each.   I will attempt to post pictures of these as well.  The purple wristbands say Find a Cure - Meghan's Chiari Warriors and the 2-tone blue wristbands say Find a Cure for Meghan - Hydrocephalus.

All proceeds for the Chiari items are going to the Chiari & Syringomyelia Foundation and the Hydrocephalus items will be split with 50% of proceeds going to the Hydrocephalus Association and 50% going to the 2013 Team Meghan hydrocephalus walking team, which will be donated to Hydrocephalus Association on behalf of Team Meghan at the 2013 Walk.