Tuesday, November 30, 2010

The Amazing Madie...

“If you can?” said Jesus. “Everything is possible for one who believes.” 
Mark 9:23
Have I mentioned lately that Madie is AMAZING?  She has done really well the past week.  We had a GREAT Thanksgiving with the family.  Even with a crowded house full of people she was calm and happy.  It is hard to believe that a little over a month ago we could have never done that with Madie.  She is continuing to show improvements in all her therapies.  She can roll to her tummy now but doesn’t have the upper body strength to hold her chest up although she can turn her head from side to side while on her tummy though.  Madie is also really moving her arms and legs now and we can no longer lie her down on her pallet, walk away and find her in the same place you left her.  She will have scooted off the pillow and will be sideways.  If you put a toy beside her she knows to hit it to make the music and lights turn on.  She is also opening both hands and starting to grab things close to her…mostly her shirt, blanket and G-tube.  So we have to watch her close to make sure she doesn’t yank that out!  She still has to work hard at getting her arms and legs to do what she wants, but we can see the wheels turning and can tell that she is without a doubt heading in the right direction.  Madie loves loves loves to have all the attention for herself and she watches my every move and would prefer that I am holding her or sitting next to her.  If I start to get up she will stick out the bottom lip and scream.  She is either happy or extremely mad and doesn’t really seem to have an in between at the moment.  She is a smart little lady and definitely has all of us figured out!  
Tomorrow Madie has her appointment with her new GI doctor.  I am hoping that we will also get to meet with the dietician.  The plan with the original GI was to get Madie back to bolus feeds and off of the amino acid based formula.  I am hoping that if we can get her back to bolus feeds that we can start doing more things outside of our house without having to take her feed pump with us.  So say a little prayer that since Madie’s throwing up seems to be under control that we can start moving back towards multiple feedings instead of one 12 hour feed.  Madie should also have her swallow study early next week.  We know she is swallowing but the study will tell us how weak or strong her swallow is and what she might be able to tolerate by mouth.  Hopefully we will get good results from that because I know a few speech therapists out there that are itching to get some goodies in Madie’s mouth!  Thursday morning we will head to Dallas for Madie’s neurology appointment.  I am assuming this is just a follow-up because if I remember correctly our neurologist, Dr. Castro, stated that Madie would be on her seizure meds for 6 months and then they would perform a repeat EEG.  I am very nervous about going because I prefer to only believe that Madie is going to keep getting better and make a full recovery and I feel like the neurologist is sometimes the one person that can crush those beliefs.  The good news is that Dr. Castro has always been very nice and always seemed to genuinely care about Madie and the even better news is that Madie is a COMPLETELY different baby than she was when Dr. Castro saw her last.  I am really quite excited to show her off.  Please pray that we also get positive results from this appointment.
Madie continues to amaze us a little more each day!  I love to look at her from day to day and week to week and see her progress.  It is crazy to think how great she looked a week ago and then look at how REALLY great she looks today.  We are so grateful that God continues to answer prayers and bless our precious Madie. I will do my best to update Friday and let everyone know how the appointments went.  Molly Michael and I have a busy weekend that includes a few birthday parties and a trip to see Disney Princesses on Ice.  She has already asked MULTIPLE times if she can be a princess on ice and if she can wear her Cinderella costume.  I told her she can of course where her Cinderella costume but you have to know how to ice skate to be a princess on ice to which she replied, “I can, I know how to ice skate.”  Wish me luck because I am sure she will continue to try and figure out a way to get on the ice.  Please pray that Madie tolerates the ride to and from Dallas and as always pray for Madie’s continued healing.
With Greatest Gratitude,
Kristin, Matt, Molly Michael and Miracle Madie 

Thursday, November 25, 2010

Gobble Gobble

Be joyful always; pray continually; give thanks in ALL circumstances, for this is God’s will for you in Christ Jesus.   1 Thessalonians 5: 16-18
Happy Thanksgiving!  We had a great day spent with our wonderful family.  I started writing a list of all that I am thankful for and it didn’t take me long to realize that it would go and on forever and I would inevitably leave someone or something important off.  For that reason I decided to skip my list and I’ll just elaborate on a few of the obvious things we are thankful for. 
First and foremost, we are thankful for God.  We couldn’t have made it through the first day without him.  Being able to fully trust that God is in control has made every day manageable.  Our faith has been tested but it has only gotten stronger.  We know without a doubt that God has big things in store for Madie.     
There have been several people who have asked me how we stay so positive through all of this.  Matt and I decided from the start that we would do everything we could to be optimistic and rely on God to get our family through this heartbreaking moment in our lives.  I honestly can’t imagine how we could get through this any other way.  I don’t see how it would help any of us of if we focused on the things that MIGHT be wrong with Madie or that COULD go wrong.  Instead of being sad about what has been taken from us we are most thankful for everything we still have and all that we have learned over the past three months.  I’ve learned I am so much stronger that I could have ever imagined.  I’ve learned that Matt is so much more than my husband, my best friend, and the world’s best dad.  He is my soul mate and I know that God put him on this Earth to be with me.  I’ve learned that Molly Michael is an incredible little girl as well.  She has consistently surprised me at how well she has handled everything that has happened.  And then there is Madie… I am so thankful for her and the fight she put up to survive and the fight she has since put up to get better.  She amazes me every day.  It hasn’t been that long since we thought it was amazing that her right arm was starting to relax and she would open her hand a little when she was asleep.  Less than a month ago we thought it was great that we could get Madie to smile if we tickled her and now she smiles all the time.  You don’t have to do anything besides wave to her from the across the room.  She used to scream and cry anytime she was awake and was only quiet when she slept.  Now, she is happy all the time!  She can roll side to side and as soon as she realizes what to do with her arm she’ll roll all the way over.  Our nurse and all of our therapists talk about how much she changes from week to week.  Proud doesn’t even begin to express how I feel about her.  I know I have every right to be sad and mad about all that has been taken from our family, and sometimes I have those feelings, but more often than not I am thankful and grateful for all that has been given back to our family.  We are blessed indeed.
We are thankful for our family, friends and community.  I won’t even begin to name everyone, mostly because there are so many people that have done things to help our family that we don’t even know about.  Marshall, TX came together like I have never seen to help when we needed it most and we will never forget that.  We are thankful for everyone who has wanted to help not only Madie but our family as well.  There is no way we could have done this alone.  Madie is so lucky that are so many people out there that want so badly to be a small part in her recovery.  We hope everyone knows that our family is so appreciative of everything everyone has done for us and that we plan to pay it forward and help others in need in any way we can.
I could go on and on and on because there are so many other things we are thankful for not only today but every day.  I am so happy that we got to spend today surrounded by family.  I hope that everyone had a fantastic Thanksgiving.
Ok, one last thing I am thankful for…an Aggie win. Way to go Ags!
Please continue to pray for Madie’s continued healing.  She has an appointment with her new GI doctor in Shreveport on Wednesday and then we will be heading to Dallas on Thursday for her follow up Neurology appointment.  Please pray that we get positive results from both. 
With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie

Tuesday, November 23, 2010

Drumroll Please...

Well... I have decided to start a blog to keep everyone up to date on all things Madie and Molly Michael too.  I know I mentioned this on Caring Bridge and I got lots of suggestions that the blog name should be Miracle Madie.  While I agree that she is indeed a true miracle, my hope is that many, many years from now I will still be writing this blog and it will be filled with stories about my family and our everyday normal lives instead of only stories about how Madie is recovering from her accident.  So for that reason, I went with The Skinner Sisters instead of Miracle Madie.  My friend Brooke and I tried to come up with a far more creative name, but apparently we weren't creative enough because the 50 other names we tried first were already taken!  I will post here AND on Caring Bridge for awhile and eventually just put the updates here.  So here is today's CB update.  And since those of you reading this are my very first followers (should you decide to actually follow my blog) I will share a very exciting picture from today that happened after I posted my caring bridge update.  Madie almost rolled all the way over and was really quite happy about it.  Before today she had only made it to her side.  She also learned that if she hits her new toy that it will light up and play music.  She is one smart cookie!   I hope both of you reading this enjoy it!