Happy Easter!

Madie LOVED riding with her big sister in her jeep before her accident.  In my September 4th caring bridge post I posted the following statement “What we knew as “normal” on the morning of August 25th is of no concern to us now.  This is our new normal and we are determined to make it miraculous.  God has had a plan for Madie long before she was born.  We are confident that she will continue to make progress and we are so excited to help her learn how to do all the things God has in store for her.” So here we are, 8 months post-accident, embracing our new normal which is starting to include small bits and pieces of our old normal.  God’s plan for my children is a beautiful one!

 I honestly don’t mean to go so long between updates and I feel horrible because I really do want everyone to know just how much Madie is progressing.  I have been attempting to type this particular update for TWO weeks and I have now decided to skip my post Easter nap and fill you in on the past month.

Madie FINALLY got her gait trainer and new stroller two weeks ago!  He stroller is so big but so light and Madie seems very comfortable in it.  It is so nice to be able to load and unload by myself.   I will try to remember to get a picture of her in so you can all see her new ride.  She is doing really well with her gait trainer.  We thought that she would be getting a set of guides that would keep her ankles and thighs aligned but for one reason or another they didn’t arrive with the gait trainer.  I have called the company we order her equipment from and they are supposed to seeing about getting us a set.  Madie knows to take steps in order to move but her coordination isn’t very strong so she tends to “scissor” her legs, meaning one crosses over the other.  The guides would still allow her to take steps but would keep her legs properly aligned.  She also needs a new pair of AFO’s (braces for her feet/ankles).  She was fitted for her current pair months ago and right after her casting was done.   Not sure how many of you have actually seen Madie lately but she has grown…A LOT!  We made an appointment at Custom Care Orthopedic Bracing in Longview and met with Steve.  He seems like he is going to be perfect for Madie.  He showed us an example of what he is thinking about doing for Madie and we are really looking forward to working with him.  We will be going back soon to get her fitted for new set.    

 We went to see Madie’s rehab doctor at Our Children’s House on the 14^th.  She hadn’t seen Madie since the beginning of January so she was impressed with how much improvement there has been.  Before the appointment we had noticed that Madie’s muscle tone was really low.  She had become a big noodle and we weren’t really able to get her to put any pressure on legs if you tried to get her to stand up.  Dr Raji decided to cut Madie’s baclofen (muscle relaxer) dose in HALF and we have noticed a BIG difference.  She is almost sitting up all by herself and is back to standing up, with lots of assistance of course!  We also saw all of Madie’s old therapist while we were there.  We hadn’t seen her PT or her ST since we left so they were really SHOCKED! When we left OCH in November Madie wasn’t really moving, she was barely smiling, her vision was still questionable and the list goes on and on.  So to see her now and all that she can is pretty amazing.  Although I suppose I am a little biased. 
Madie’s eating is getting much better as well!  She is really wants to pick up everything herself and she prefers that if you are going to put something on spoon that she be the one to put it in her mouth.  She is still getting 100% of her nutrition from her tube feeds but I am confident that we are VERY close to replacing at least a small portion with actual food!  We give her what we eat every night and seems to enjoy almost everything.  Madie has a serious dislike for baby food and it doesn’t seem that she cares much for pureed table food either.  She watches your every move when you are eating.  Her eyes will follow my fork from the plate to mouth with each bite I take.  You can tell she WANTS to eat so very badly.  We have just recently seen huge improvements with her sippy cup drinking.  She loves it and she will even hold the cup on her own.  Makes Matt and I so proud! 

I have so much more that I want to share and since I haven’t updated in a month I could seriously write 4 pages.   If I had the time I would do it in a heartbeat.  I hope everyone had a Happy Easter spent with all of the special people in your lives.  I have had several moments today that I have had to take a deep breath and blink quickly to keep the tears in my eyes from overflowing.  Not because I am sad but because I am so happy, lucky, blessed, loved and I could go on and on.  Madie’s accident has brought us so much closer to God and while I have always understood the meaning of Easter I almost feel like this is the first time I have felt the meaning of Easter. 

As usual I will promise that I will try to update more often, seriously!  It would be so much easier and less time consuming if I would do it a couple of times a week.  I have a feeling that I am not far away from being someone who has every waking hour of each day planned out and honestly I think I would love it!  Thank you for keeping up with Madie and continuing to pray for her and our family.  Please remember to check out Anthony’s page and Charlie Rae’s page.  Also please forgive any typos and grammatical errors because we are heading to Matt’s mom’s house for a quick visit and I have no time proof read. 

With greatest gratitude,

Kristin, Matt, Molly Michael and Miracle Madie