Tuesday, January 25, 2011

Oops, I did it again...

A person who lives in faith must proceed on incomplete evidence, trusting in advance what will only make sense in reverse.    – Phillip Yancey
I feel like it should be Friday but it is only Tuesday.  Yikes.  I make a promise to myself what seems like every week that the following week will be my week that I get myself and my life organized.  It never fails that once “next week” gets here, I am just as unorganized as I was the week before.  So maybe next week will be THE week…we’ll see about that.  Matt is going quail hunting this weekend and I have enlisted the help of my wonderful friend Mandy to help me organize a couple of closets here at home.  So at least if my life isn’t organized, my closets will be…for a little while at least.  OK, enough about me, I’ll get to the good stuff.
Today is the January 25th which means it has been 5 months since the accident.  Sometimes it seems like it has been a year and other days it seems like it has been a few weeks.   Madie is continuing to improve and live up to her nickname of Miracle Madie.  She is starting to show a little more interest in eating.  She definitely lets us know if there is something that she doesn’t want to eat.  We are still trying to get her feeds worked out and she has been having some trouble tolerating her first feed every morning.  We have rescheduled our follow up visit with the GI doctor for next Thursday.  Hopefully he can give us some answers or suggestions on what we might do to help keep that morning feed in her tummy.  We are tired of smelling like vanilla pediasure.  Ashley, who is Madie’s speech therapist, has order another swallow study and we hope to schedule it for next week.  Please pray that Madie shows some improvements since her last SS which was about 2 months ago. 
Madie is also showing improvements in both physical and occupational therapy.  Phil, our physical therapist, has set new goals for Madie since she has already met her original 6 month goals.  We are now working on sitting, standing, walking and crawling.  Madie is getting stronger and we are so excited to see her tackle her new goals.  Then there is Madie’s occupational therapy, which is getting much better, but Madie still puts up a big fight.  She really makes poor Stephanie, the OT, work hard for her money!  We also got a new nurse.  Her name is Jenny and we think she is wonderful.  We can already tell she is going to play a big role in Madie’s healing and we feel so blessed that God has placed her in our lives.    
Since I missed updating last week I didn’t get a chance to request prayers for our close friends Brooke and Lance.  Their youngest son has been in the hospital since last Wednesday but finally got to go home today.  Please pray that Layton continues to heal and they can get back to a normal routine. 
We are also requesting prayers for some other friends in Marshall.  Please pray for baby Charley and read her story on her caring bridge website.  You can follow her here.  Please pray for this family and their sweet little girl.  They are going through such a scary time and they need your prayers.  Please leave them a message because we still find so much strength and comfort knowing so people are praying for Madie and I know they would appreciate it as well.
I’m heading to bed because I am planning to take Madie back to Kindermusik tomorrow for the time since her accident.  We love Ms. Donnis and Molly Michael and Madie have both always loved KM.  Madie thinks it is hilarious when Molly Michael dances and sings around the house so I am hoping that a room full of kids dancing and singing will be equally as hilarious.  Jenny is going to come with me so if it turns out to be a disaster; at least I will have a little support.  Wish us luck.  I wish I could bring Molly Michael with us, but she will be at school.  We’ll see how the first few classes go and then maybe she can skip a day of Pre-k to join us.  I will try and remember to bring the camera so we can get a picture of all the fun! 
Thank you, as always, for keeping up with Madie’s story.  We know that Madie is a true miracle and proof that God hears our prayers.  That being said we have faith that God will continue to take care of sweet Layton and Charley.  
With Greatest Gratitude,
Kristin, Matt, Molly Michael and Miracle Madie
 I tried for AT LEAST 15 minutes and this was the best picture I could get of two crazy little girls.  The problem is that Madie follows Molly Michael everywhere she goes and Molly Michael is always on the go!


Sunday, January 9, 2011

Hey 2011, where did you come from???

Oh my goodness.  Where did December go and how are we already a full week in January?  We have been home two months now and it has really flown by.  I am so excited to have the next few months with no major school holidays so I can finally get REALLY organized.  This week was supposed to be my first full week in a while to get things done and what happens…SNOW DAY.  Oh well, we will have a fantastic day playing in the snow and watching movies.
Christmas day marked 4 months since the accident and Madie is doing amazing!!  She continues to improve every day and show everyone that God is listening to and answering our prayers.  It has been so long since I updated that I don’t even know where to start.  I promise I won’t go that long again!  Madie’s swallow is getting stronger.  We feed her once or twice a day but only for therapeutic reasons not nutritional.  We have definitely seen improvements though!  Her speech therapist hasn’t mentioned when she will order a follow up swallow study but I am sure she will let us know when she thinks Madie is ready.  I’m not sure if I mentioned this in my last post but we finally found a wonderful dietician.  She has been an absolute blessing to us.  Madie is finally on a regular formula and getting 5 feeds a day.  She is at her goal for volume and now we just need to get the feeds down to an hour with two hours in between.  That will give us more freedom to take Madie places without having to bring her feed pump with us.   
Madie’s occupational therapist is still working on strengthening her arms and head control.  You can see large improvements just when Madie sits in your lap.  She holds her head up much better and uses her arms to try to hold herself up.  Her coordination is also really improving.  If Madie sees something she wants, then she will reach for it…and most of the time she gets it!  She can roll to her tummy and we even found her sleeping on her stomach this morning. 
About a week ago, we got Madie’s standing frame.  She loves it.  She hasn’t been in a stander since we left OCH so it is amazing to see her progress!  She also loves for us to stand her up without it.  She puts pressure on her legs and will even attempt to take steps.  She is still very much like a noodle but the fact that she knows what she is supposed to do speak volumes to all of us.  We went to Dallas to see Madie's physical medicine and rehab doctor last Thursday and she was very impressed with Madie’s progress.  She lowered her dose of baclofen, which is a muscle relaxer.  The doctor wants us to watch her for 2 weeks and then let her know how she is doing and at that point she may lower the dose again.  Other than that, she said everything looked great and that she would see Madie again in three months.  While we were in Dallas we went to have Madie measured for and ordered a stroller.  We also started the process to order a gait trainer, which is a piece of equipment that will help Madie learn to start to walk again.  We put her one in to make sure we had the right fit before ordering and she knew exactly what to do!  I can’t wait until we have one at home so that she can get lots of practice.
I am sure that I am leaving off a long list of accomplishments that Madie has achieved since you heard from me last so you will just have to take my word that she is proving she is a fighter.    
Molly Michael is continuing to show us that she is the world’s greatest big sister.  Although she has her moments when she doesn’t want to share the spotlight, she is usually very willing to help out when asked. We try very hard to make her feel included and she loves to be the therapy helper when she is home…especially for speech therapy because that usually involves candy.  She had a lot of fun playing in the snow today.  I will try my best to get a few pictures of us outside building “snow sand castles”.  I tried to tell her that we could just call them snow castles since they were made of only snow but she was having none of that.  I am sure by tomorrow afternoon as the snow turns to slush we really will be making snow sand castles.
Again, I am so sorry that I haven’t updated in almost a month.  I am going to try to post an update once a week now.  We are still so thankful for each of every one of you who still ask about Madie and let us know that you are still prayer for her and our family.  I wish you could all see her in person so that you could understand that God is listening and answering our prayers.  We hope that everyone is having a wonderful new year.  Keep the prayers coming!  We are so grateful for them all.
With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie
Here are pictures of Madie in a standing frame taken exactly 3 months apart.  I think pictures show just what a HUGE miracle Madie is!