Thursday, August 25, 2011

Happy Birthday Madie!

Those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.  Isiah 40:31
My phone has gone off all day long with messages telling me how much they love Madie and what a miracle she is and my inbox is full of emails with the same message.  It truly reminds me how blessed my family has been this past year with an overwhelming amount of support and love from so many people.  Each message and phone call has made today a tad easier and although I tried to reply with at least a “thank you” if you didn’t get a reply please that we are genuinely grateful!
 For months I’ve thought about what I would write when today came and I thought it would pages long but as I sit here in front of my computer I find myself at a loss for words.  Then I decided I would share my thoughts for Madie with you.  When Molly Michael was a year old I wrote her a letter and tucked it away in her baby book for her to read one day when she is older.  Madie, being my second child, got no such letter in her baby book so I’ll print this off and tuck it away.    
Dear Madie
One year later, what a bittersweet day.  Your brilliant smile is so contagious that I have hard time being sad around you today but there is no way to ignore the fact that this is hardly the life I imagined for you or any of us for that matter.  The fact that you are doing so well makes it tremendously easier to be happy today but my mind is flooded with memories and thoughts from the day of your accident.  I can vividly remember August 25, 2010.  You had waffles and a banana for breakfast, I can remember the clothes you wore, I remember the clothes I wore, I remember kissing you goodbye and I remember them telling me at the dentist office that I needed to go across the street to ER immediately.  As I walked across I can remember thinking, PLEASE let this be anyone but my girls.  I looked at my phone and saw several missed calls from the sitter and I knew immediately that it was you.  As I walked past an ambulance I overheard a man say, “There was a one year old found in a pool” but I was still hopeful that it wasn’t MY one year old.  I could probably name every person that was there lining the hall outside your ER room and there were a lot of people.  I could tell you all about the plane ride to Dallas, walking in the PICU waiting room at Children’s and everyone that was there waiting on us. I had your nurse bring in a tall chair so I could sit beside your bed and lay my head next to you so you could hear me begging you to keep fighting.  I could write a novel with the details I have stored in my mind from this day one year ago. BUT, here we are, one year later and we have so much to be thankful for and I could write 10 novels on how amazing it has been to watch God heal your body and reveal your beautiful personality once again.  You have progressed more to date than most doctors felt you would in your lifetime.  You have amazed those closest to you and, judging by the number of Caring Bridge page views, thousands of people you have never met.  Your story is incredibly inspirational and has strengthened many people’s relationship with God. I am so proud of you and so happy that God picked me to be your mom.  At only two years old you have worked harder at life that some people will in a lifetime.  I’ve watched your brain go from a state of almost nothing to understanding everything of what we say to you and I know it won’t be long until your brain has the capability to tell the rest of your body what to do.  One day I know you’ll be walking, talking, running and telling everyone your miraculous story.  I am so sorry that you have to fight this battle but I know God picked you and our family for a reason and I thank Him daily for allowing us to keep you here. 
Love, Mommy

We ended today with a trip to the Marshall Police Department to visit and eat dinner with the officers that were there with Madie one year ago.  It was absolutely perfect and Madie even let them hold her while they took a picture. It was great to spend a little bit of this special day with them.  Saturday morning we’ll be getting to go have breakfast at the Marshall Fire Department with the rest of the first responders.  
Thank again to each of you for continuing to pray for Madie! 
With greatest gratitude,
Kristin, Matt, Molly Michael, Miracle Madie

Sunday, August 21, 2011

Four Days

Here is Madie STANDING UP, with a little assistance, in her SPIO suit that I mentioned in my previous post.  Check out those leg muscles!  And pardon the mess!

Four days.  Four days until it has been a year since our lives were shaken and completely turned upside down. Four days until it has been a year that Matt and I came too close to losing our youngest daughter.  Four days until Molly Michael’s best friend and little sister was almost taken away.  Four days until someone else’s terrible mistake forever changed our lives.  Four days until our only hope was to strengthen our relationship with God and have faith that He was in control and would take care of all of us.   I am having a hard time deciding what I think Thursday will be like at our house.  Sometimes when I think about it I feel like it will be a wonderful and joyous day because Madie is such a miracle and she doing so well, other times I start to cry just thinking about it and I tell her how sorry I am that this happened to her.  Even though Matt and I decided to stay positive on this journey I know that Thursday will not only be full of blessings and happiness but also a little sadness because there are few things that we want more than for August 25 to be just another boring day.  My plan is to make Thursday more a day of celebration than a day of heartache.   
I have a few specific prayer requests as we approach August 25th:
1.   Please pray for our family and our friends that have faithfully stood by us and offered their support. Pray that we will be reminded of all of the good that has come from this accident instead of the bad memories that I know are embedded in our minds from the days and weeks following 8/25/10.
2.   Please pray for the Marshall Fire Department, Marshall Police Department and all of the hospital staff at Good Shepherd-Marshall and Children’s Medical Center in Dallas.  Without them we wouldn’t have much to celebrate on Thursday.
3.   Please pray for the babysitter as I assume that Thursday will probably be heavy on her heart.
4.    Most importantly, please pray for our sweet Madie.  That her brain will continue to heal and she will continue to prove to everyone who knows her story that God hears these prayers and he is taking care of all of us.   Also, while you’re all at it, go ahead and pray for her to poop more because we’re having some constipation issues.  Sorry, I thought I might lighten the mood a little. 
I’ll be sure to write a post on Thursday.  I have A LOT to say and I’ll probably need to start typing it now!  Thank you so much for sticking with us and continuing to follow Madie’s journey.  Your messages have provided us with an unimaginable amount of strength this past year and we are so thankful for all of you.
With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie 

Tuesday, August 2, 2011 update!

Well I totally dropped the ball on promising to update with Madie’s latest progress.  I swear if I had more time I would update daily.  I can’t believe that we have been home from OCH for over a month!  Madie’s therapists here all agree that she definitely benefited from her two week stay there.  We have implemented all of the ideas we got during out stay there and are starting to see some results. 
Madie is eating more and more by mouth every day so that means smaller and shorter tube feeds.  She needs to eat 240 calories 4 times a day and we haven’t been able to get an entire 240 in her during one sitting but we are seeing major improvements.  She is also doing really well with her sippy cup and can pick it up and drink all by herself!  I have started giving her some of her formula in the sippy cup as well.  Keeping up with Madie’s fluid and calorie intake is almost a fine science and there is a lot of measuring taking place in our kitchen.  A very sweet friend of mine bought Madie an amazing assortment of tasty ready to eat pureed foods.  I’ve tried almost all of them myself and they are really good.  Madie definitely has her mind made up which ones she likes and which she doesn’t.  I’m also learning how to puree what the rest of us are eating.  Some things are proving to be trickier than others. 
We are also starting to see Madie “talk” more.  She can say Dada, Mama, Da(dog), Bye-bye(sometimes) and sometimes I think she is saying “that”.  She definitely has her own language and she knows what she is saying…if only the rest of us could figure it out.  There are times when it sounds like she says something so clear and then we try to get her to repeat it but she doesn’t.  It is very evident that Madie understands almost everything that is going on and what you are saying to her.  She really wants to talk so bad.  Her babbles are different when you are making eye contact with her versus when she is playing with a toy or sitting alone in her seat.  She will also often mimic your lip movements when you try to get her to repeat words.   
Madie’s PT and OT are both going really well.  She is getting much better at sitting up but still needs support most of the time. Madie’s therapists at OCH felt that Madie’s brain is aware of what her limbs need to do to walk, crawl, sit, etc.  But maybe, her body isn’t quite aware of where her limbs are, the brain is a tricky thing!  So we ordered Madie a compression suit (Spio Suit) with the hope that the deep pressure she receives when wearing it will help her brain realize where her arms and legs are.  So far it really seems to be working.  Her therapists agree that her ataxia seems much better when she has her Spio suit on and her movements are noticeably much more controlled.  
Madie has also started some aquatic therapy with her physical therapist.  A friend of mine has amazing pool and offered to let us use it for Madie’s therapy and it is going really well.  I am fairly certain that Madie would have no problem at all swimming every day!
Before we left OCH Madie’s therapist suggested that we try Madie in a piece of equipment called a lite gait.  The lite gait is designed to help patients walk on a treadmill.  When I called our equipment company, Madie’s rep let me know that we couldn’t order one until October but in the meantime we could try Madie’s gait trainer on a treadmill.  The only problem was that the treadmill would have to be wider than the gait trainer and it would need to have a slowest speed of .01 MPH.  Well wouldn’t you know that the old treadmill that I have been hanging clothes on in bedroom for years was the perfect fit and speed!  So the idea behind all of this is that we will put Madie in her gait trainer, lock the wheels, turn the treadmill on its lowest speed and we will move her feet for her.  She knows to pick her feet up and take steps if you hold her up but when she is done she is done.  Plus she weighs 32 pounds so it is tough to do.  So this new way allows us to pick Madie’s feet up for her and help her take steps.  In theory, the repetitive nature of walking on the treadmill will help Madie’s brain reroute the message that this is how to walk.  I’m sure this sounds crazy and I really need to get a video of her doing it and hopefully it will make better sense.  We tried this for this first time Saturday and she did great and was taking beautiful steps with little to no initiative from us after just a few minutes.   
I can’t believe summer is almost over.  Molly Michael will be starting her last year of pre-k(snif snif) in just a few weeks.  She has had a busy summer but is ready to be back with all her peeps at school.  I’m ready to have the routine back too!  I think I forgot to mention in my last update that Molly Michael broke her arm.  She had a brilliant idea to take all of the cushions off the couch and THEN jump on the it.  Well, she fell and broke her left arm but trust me when I say it did not slow her down one bit!  She was supposed to wear the cast for 3 weeks but after 2 weeks and the 100+ degree temps here, the cast started smelling.  Once I could smell it in the front seat when she was in the back, I felt like it was time for a change.  They x-rayed her arm and there was already a good amount of new bone growth so she got to go cast free a little early.  Thank goodness! 
As we get closer and closer to the one year mark since Madie’s accident, I want to sincerely thank each of you for continuing to follow our story.  God has absolutely blessed our family!
With greatest gratitude,
Kristin, Matt, Molly Michael and  Miracle Madie