Sunday, December 18, 2011

Hello...Anyone there?

We’re still here!  I can hardly believe I remembered my password to logon.  I would love to say that my lack of updates is because I’ve been sitting around being lazy and taking long naps but that is hardly the case.  We’ve been enjoying life and busy as usual.   Obviously, I have a lot to cover and if I tried to touch on everything that has happened I would miss Christmas.  So, I decided to make a list about Madie and I will elaborate on a few important accomplishments Madie has achieved.
·         Is sitting up REALLY well.  We still can’t just sit her down wherever whenever but she can sit unsupported for longer amounts of time and if we put a Boppy pillow behind her she is good to go for a while. 
·         Has a new ball pit, which helps her work on sitting up.  Thanks pinterest for the idea!

·         Is eating 3 meals a day but still gets some of her daily nutrition through her g-tube.
·         Loves to eat cheerios and yogurt melts AND can pick them up all by herself.  She also likes to share her cheerios with those she loves the most, including our dog Milly who will whine if Madie isn’t dropping what she deems an appropriate amount. 
·         Likes to brush her hair all by herself, although she only really gets the front part.  She also thinks its grand if you let her brush your hair!
·         Enjoys wiping her own face and will do so for 15 minutes but still would rather no one else do it.
·         Gives the best hugs and they sometimes include sweet little pats on the back.
·         Gives a lot of sweet kisses.
·         Has started helping us get her dressed.  She will push her arm in and will pull it out when putting on or taking off her shirt.  She will try to pull her jacket off when she doesn’t want it on and if she doesn’t want to wear a hat believe me when I say she won’t even give you an opportunity to put it on!
·         Loves music and dancing.
·         Has a ridiculous amount of love for The Fresh Beat Band and Yo Gabba Gabba. 
·         Enjoys her standing frame a lot.  In the beginning getting her in for 30 minutes at a time was tough and now she’ll stay in there for over an hour.  It helps strengthen her legs and allows her to do fun things with Molly Michael, like play-doh!

·         Since her legs have gotten stronger she seems to be enjoying her gait trainer more.
·         Has learned to “put in”.  In OT one of the goals her therapist has worked on for some time is to put toys, balls, blocks etc. in a bucket or shape sorter.  Madie has always been a big fan of taking out but never wanted to put in.  FINALLY she enjoys putting in.
·         Can clean up.  Since she has learned to “put in” she will also put her toys away when you ask her to…sometimes, after all, she is still very much a two year old.
·         Loves reading books.  I’m pretty sure she would have no problem sitting in anyone’s lap reading books all day, every day.
·          Doesn’t want Molly Michael touching a toy or book if she is playing with it.  It cracks me  up to see Madie act like any other toddler.  If we are reading a book together and Molly Michael tries to even turn the page, Madie will scream and grab the book and try her hardest to close the book enough that Molly Michael can’t see the pages.  Silly girl.
·         Got a new Tricycle thanks to the Longview Ambucs.  Click on the link and read more about this amazing organization.  Madie is so very proud of herself every time she gets on her tricycle and the smile on her face lets you know how happy she is!

·         Started going to Hippotherapy at Windridge Therapeutic Equestrian Center  and it has been INCREDIBLE!  Please follow the link and read all about this facility and all of the remarkable things they do.  We have noticed some very big changes in Madie since she started in October, specifically the improvements in her sitting up and her head control has also greatly improved. 
·         Is 100% boy crazy.  She loves boys and that is the truth.  Feel free to test this theory next time you see her, she’s smitten.
·         Was the cutest Wonder Woman ever for Halloween and Molly Michael was the most beautiful Alice in Wonderland ever!
·         Most importantly, still improving and amazing us every day!
 Madie has also become quite the actress.  Here she is doing her best cough. 

So much has happened in the past 4 months since my last post and I am sure that I am leaving off many an important detail.  Hopefully this will teach me an important lesson about procrastination and I will make more frequent posts!

Thanks so much for continuing to check in on Madie and our family.  We are, as always, very thankful for your prayers and encouraging words.  We hope you all have a very Merry Christmas and enjoy time spent with family and friends.
Matt, Kristin, Molly Michael and Miracle Madie

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

Thursday, July 14, 2011

A few of our heroes

For where two or three gather in my name, there am I with them.    Matthew 18:20
I have mentioned several times how blessed we are to live in Marshall and tonight was yet another outstanding reminder. At 7:30 this evening at the City Park there was a beautiful candlelight prayer vigil organized by Cindy Duncan to honor all of the precious kids from the community that have been treated at different children’s hospitals.  Cindy is Charley Rae’s grandmother.  There were so many wonderful moments but one that was really extraordinary for our family.  We had the opportunity to visit with some of the first responders from Madie’s accident.  Matt’s mom was sitting in a chair holding Madie and I looked over and she had a group of Marshall Fire Department employees crowded around, all of them wearing HUGE smiles on their faces. When I finally had the opportunity to talk with them I could only say thank you and hug them because I wasn’t wearing waterproof mascara, not to mention I was afraid that if I started crying I might never stop and it was still very early in the evening. I’m sure you are all wondering why we haven’t made a trip to visit with our heroes yet but I promise we have been planning a visit to the fire department and police department since we got home in November but just haven’t got ourselves organized yet.  Now that we are so close to the one year anniversary of Madie’s accident Matt and I feel like it would be really incredible to share that special occasion with all of them. Look for that update sometime in August!  In an accident like Madie’s every second her little heart wasn’t beating and every second she was without oxygen is devastating. The CPR and the care she received from all of the first responders was vital to her survival and we will never be able to repay them for what they have done for our family.  They have had a huge impact on our lives and I have no doubt in my mind that Madie has done the same for them. 
Here are a couple of links that I have been meaning to post for almost a month now.

This is story from the Marshall News Messenger about a few great dads from Marshall, but I don’t think you’ll have any trouble figuring out which one I think is the BEST!
Here is a story from the Dallas Morning News and there is also this little video.  Funny little tidbit, after doing this interview I realized that my pants had been unzipped the entire time.  I told myself that there couldn’t be THAT many people that read the Dallas Morning News, but alas, it didn’t make the paper. There are few things in the story that are quite correct, but I’m pretty sure that all of you reading this know Madie’s story. 
In other Skinner family news, sweet Molly Michael decided she would remove all of the cushions from our couch and then proceed to jump on said couch.  After roughly 10 seconds of jumping she fell and fractured both bones in her arm. Poor girl.  She just learned to swim with her floaties and that is all she wants to do.  Good news is that she only has to wear her cast for 3 weeks!  Hopefully July 26th will be her last day with the cast and then she get back in the pool.

I promise, promise, promise I will update in the next couple of days with an update on Madie’s progress.  I have so much to tell but it is already after midnight and I am worn out!         
If any of you are in Marshall and you have kids ages 6-12, please contact the Boys and Girls Club at 903-935-2030.  There will a fundraiser for Anthony Herman this Saturday.  From 8:00-12:00 they will host a cheer camp and from 1:00-5:00 they will host a basketball camp.  If you would like to help but do not have kids I am sure that there are children would love to attend but may not have the funds to do so.  Finally, please remember to pray for Jaci Mitchell.  She has had a rough couple of weeks but has still managed to work hard and amaze everyone around her.
Thank you all for continuing to keep up with Madie’s journey and thank you for continue to pray for our family. 
With greatest gratitude,
Kristin, Matt, Molly Michael and Madie

Wednesday, June 22, 2011

Two weeks down...already??

Our two weeks is almost over!  I can’t believe it is almost time to go home but we have learned lots of new things to try when we get home.  These two weeks have been absolutely wonderful for Madie.   It has been so beneficial to have all three therapists, her rehab doctor, dietician, a pediatrician and all kinds of equipment all in one place.  It gives everyone who comes in contact with Madie an opportunity to brainstorm on what is best for her.  What works for one patient may not work for Madie and what works for Madie may not work for another patient so it has been great to have the chance to try equipment here that we don’t have at home before buying it only to find out it will be of no use.   Her therapies are only 30 minutes each but she is exhausted by the time she is done with all three and I can tell she has been working hard.  I feel like once we are back at home we will be able to better manage Madie’s day and make it much more productive for her, and maybe a little less boring for her nurse Jenny.  Not that Madie gives any of us the opportunity to get bored, she is pretty demanding of your attention!   
Madie’s eating is going well.  We are transitioning her from 5 feeds a day to 4 feeds and she has been getting a food tray all three meals of the day.  Now, she isn’t actually scarfing it down but she is taking baby steps towards eating.  I tried ordering her “regular diet” trays with the hope that I could mash it into a Madie suitable texture but she thought it was HILARIOUS to spit foods all over my face.  So Patti, her ST, decided to try a pureed meal tray.  She is doing much, much better the pureed foods.  Tonight she probably ate the most I have seen since the accident.  I was so proud of her, mostly because it was a pork chop pureed to the consistency of buttercream icing.  I’m going to have to figure out how to puree foods to the same consistency that they are here.  No matter how hard I try my purees are still lumpy and she wants nothing to do with store bought baby food.  Looks like I’ll be spending some time in the kitchen making baked potato soup and whipped pork chops when I get home!
Another reason we are so happy to be going home Friday is that Saturday is Madie’s 2nd birthday!!!  I can barely think about it without my eyes filling with tears.  It is so hard to believe that we came so close to losing her 10 months ago and now here we are with a beautiful, sweet, happy, laughing and loving miracle.  I am overjoyed that we will be able to celebrate with our whole family in our home.  I was able to sing happy birthday without crying at her party but something tells me I won’t have the same luck at home.  Ha! 
I am so excited to get home and get back in our routine and start working with Madie on all the new things we have learned here at OCH.  It has been so encouraging to see the smiles and shock on everyone’s face when they see Madie.  There are several people here that will stop by the room because they say they just love to see Madie smile.  I totally agree with them and it makes my heart so happy.  God has truly blessed my family beyond measure.
I have a new prayer request for all of you who have been so faithful with your prayers for our family.  Here is Jaci’s story.  She has been our neighbor here at OCH and is an inspiration.  She is going through a traumatic life changing event and EVERY time I see her she has a beautiful, genuine smile on her face.  She is facing incredible medical odds but her family has faith that God is leading them on this journey and that Jaci will be one of those great miracle stories you here about all the time.  She is already showing progress that most patients don’t achieve for months and her accident was a little over two weeks ago.  Please keep Jaci, her family, doctors and friends in your prayers as they are much needed and well deserved! 
I’m off to bed because I have lots of packing to do tomorrow!  Please also pray that Madie and I have a safe trip back to Marshall on Friday.  Thank you all for your support and love while we have been here.
With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie

Friday, June 17, 2011

My Grouchy Diva

I've been sharing a bed with this snuggle bunny this week.  She doesn't stay this compact though, TRUST ME.  Sometimes it feels like she might be trying to see how much room she can take up.

We made it through the first week!  Well, almost Madie has OT and PT tomorrow morning and then she is off until Monday.  I have probably seen the biggest improvements in speech.  She is really interested in eating.  The dietician has changed her feeds to every 4 hours instead of every 3.  This gives her more time in between to actually feel hungry.  Soon we will start ordering her food trays and depending on how much she will eat, we can take away some of her formula for the next feed.  The trick is going to be finding something Madie will eat a lot of…besides ice cream and Cheetos.  She loves the loaded baked potato soup from the cafeteria and I’m with her.  It taste like delicious cheese, potato, bacon and cream all blended together with a dash of Heaven thrown in for an added bonus.  Definitely not something I would feed my children 5 nights in a row, but I’ve done just that for Madie.  I might have to drop my healthy food values a little until she really gets better at eating and then reintroduce them later but for right now she will still be getting 100% of her nutrition from her tube feeds at least for a few more days.
Madie’s occupational therapist, Megan, stated that her goal is to get Madie to a one year old level.  Megan has been using blocks and getting Madie to reach for and attempt to stack them as well as working on her fine motor skills with her hands.  Madie’s ataxia makes her movements very jerky especially when she is excited so simple tasks, like picking up a block, are much harder to accomplish. It is very clear that Madie’s brain understands what she WANTS to but lacks the capability to make a plan, which is referred to as motor planning.   Her OT also wanted to get a vision screen for Madie which we had done today.  We know that Madie can see and she tracks objects side to side and up and down.  Since some of Madie’s brain damage was to the area that controls vision we wanted to make sure she didn’t have any double vision or need glasses.  The eye doctor said she for sure does NOT need glasses but she wanted us to follow up with a pediatric ophthalmologist when we leave because she might have an intermittent strabismus in her left eye.  So basically, her eye muscles are not as strong on the left side as the right and when she tracks to the left her eye doesn’t move like the right side and she tends to want to turn her head.  The doctor didn’t notice it every time and more often than not Madie’s eye did what it was supposed to but early intervention is best to avoid a potential surgery in the future.  This all makes sense because Madie’s muscle tone has always been more intense on her left side since she had swelling on the right side of her brain and your eye movement is controlled by muscles.  So chances are this could require no action or maybe we’ll get Madie the cutest eye patch the world has ever seen to wear for a little bit to help strengthen the left eye. 
My days of going to PT with Madie are over.  In the past I am a major distraction and she acts like a grouchy diva if I try to sit in or participate in her therapies.  Since we have been here she has been all smiles while she works away and I cheer her on…until yesterday.  She screamed like someone was hurting her until I pick her up and then she smiles and lets out a big sigh!  So, starting tomorrow I’ll watch from the hallway so she will once again be a productive participant, and not a screaming distraction, in the therapy gym.  
Dr. Raji decided to try to go back up just a smidge on Madie’s muscle relaxer since she has grown so much recently.  Her hope is that with just a tiny bit more baclofen, Madie can better control some of her ataxia.  We should see beginning results from this by Monday and if it is too much then we can go back down on dose and try something else. 
 Tomorrow Matt and Molly Michael are coming to visit and Madie and I are so happy to get to see them!  Matt will be staying with Madie here at OCH and Molly Michael and I will be going to stay with one of my college roommates.  Then Sunday we will come back to OCH and celebrate father’s day with one of the world’s greatest dads!  Thank you for continue prayers for Madie and our family.  We are, as always, so thankful for all of the support and encouragement we receive from all of you.
With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie 

Tuesday, June 14, 2011

we're baaaaaaaackkkk

WE’RE BACK!  We made it back to Our Children’s House at Baylor yesterday around 10:00 and when we got here were told we would be sharing a room with another patient.  EEEEEK.  I politely let them know that I didn’t think that would work and they assured us that we would have our own room by today, and thank goodness, they kept their word.  So we are getting all settled into our new, private, comfy room. 
Everyone is, understandably, shocked when they see Madie.  She is a completely different little girl than she was when we left here in November.  She has also gained 6 pounds and probably grown just as many inches.  We have met with all of Madie’s therapists and she seems to really like all of them. Her OT and ST are new (to her) but her PT, Mary, is the same one we had when we were here the first time.  All of Madie’s therapies since we left OCH in November have taken place in our living room with very little distractions so I was a little concerned about how she would do in room full of kids all doing their own therapies.  Well, she LOVED it.  It made me so happy that she didn’t have a complete melt down.  I will do my best to get a list of goals that we are trying to achieve while we are here so that I can keep everyone better updated on her progress.  So far it has been mostly evaluations so I don’t have too much to report.
Speaking of things to report, I know I am horrible and never filled everyone in on Madie’s EEG.  I am not exaggerating when I say I have been busier than ever before.  Here is an excerpt from an update I posted on September 9, 2010….
Then came the neurologist with the EEG results.  The good news is that there are no seizures.  Then they let us know that her brain activity is still slow and that she has most likely has lost some brain tissue.  She said that Madie will probably always be at risks for seizures and will also be developmentally and cognitively delayed.   There is no way to tell right now how minor or major these impairments may be, especially only 2 weeks after her accident.   They mentioned that her brain really took a hit since it was without oxygen for an estimated 25 minutes.  We, of course, knew that these terrible things were possibilities but to hear someone tell them to you so bluntly is hard to swallow.  I asked the doctor what she thought Madie might be like compared to other kids her age, 5-6 years from now.  This was such a strange question coming from me because I am so focused on the now but I kind of just blurted it out.  The neurologist then said that there is no way of telling that and I just left it at that.  Matt and I gave our same speech about how we are going to stay positive and focused on Madie’s healing and we have faith that she will still be one of those miracle kids you hear about all the time. Then about 30 minutes after she left I just broke down.  I thought about Madie and that strawberry shortcake ball and everything else that she and our family has been robbed of in the midst of this accident.  Then all of a sudden I realized I’m listening to what SCIENCE says.  We have had numerous doctors tell us that brain is a crazy thing and there is NO WAY to predict what it will do.  I reminded myself that God is in control and then I read Psalm 139:13-16.  Everything that will happen in Madie’s life story was written before it takes place.  It isn’t like the neurologist said this is as good as it will get for Madie. They are just telling us where we are now and I am pretty sure they will be shocked when we come back in a few years and they see Miracle Madie and how far she has come.    It seems that most people I have talked to agree with me.

So, the EEG…it was completely normal, perfect and beautiful.  Long story short, what that means is that Madie’s brain activity is normal and she is no longer at risk for seizures.   After Dr Castro gave us the results, she then brought in the doctor who said that Madie would ALWAYS be at risk for seizures and would ALWAYS be on seizure medicine as long as she was alive.  She told us she was so very happy that she was wrong.  If only all of those doctors would have listened to Matt and I from the beginning when we said that we had faith that God was going to take care of Madie….
I have so much more that I want to talk about but I am so very sleepy and we have a busy morning.  Maybe, just maybe, Madie will take a long afternoon nap so I can tell you all about Madie’s 2nd birthday party. 
Please pray that Madie’s time spent here at OCH is productive and please also pray for all of the other children here. 
With greatest gratitude,
Kristin, Matt, Molly Michael and Madie

Monday, May 16, 2011

Here we go again...

BIG NEWS!  When we last saw Madie’s rehab doctor about a month ago I mentioned that we were interested and researching a chair for Madie to sit in on the floor.  We have been using an infant to toddler rocking chair and not only is she quickly outgrowing it, but it doesn’t really meet her needs.  Dr. Raji asked if we would be interested in coming back to Our Children’s House to meet with a therapist who could evaluate Madie and suggest a few products that would work best for her.  We, of course, were very interested coming back because a lot of equipment is not considered “medically necessary” and is not covered by insurance.  Since we will be paying out of pocket we wanted to make sure we picked the best product for Madie’s needs as well as something that will grow with her as she recovers.  So on May 3rd we took Madie back to OCH to meet with the therapist.  We picked out a chair that can be mounted in a standard chair but also has a base so she can sit on the floor with the rest of us.  As with most of the equipment she needs, it is a lengthy process to get it ordered and delivered.  So hopefully we will have it a month or two.   While we were at OCH I questioned the therapist as to whether or not Madie might benefit from another inpatient stay since she has progressed so much in the six months that we have been home.   She agreed and said she would mention it to Dr. Raji.  I assumed that when we went for our next follow up appointment in July we would discuss it more then but I got a phone call last week from OCH wanting to set up a time to bring Madie in!  So here we go again!!!  Our scheduled admit date is June 13th and we plan to stay for a couple of weeks.  We haven’t discussed it with Molly Michael yet because we want to have the ENTIRE two weeks planned for her so she doesn’t feel like we are going to leave for months again.  While we are nervous about our family being separated again, we are all VERY excited about this opportunity for Madie.  It will probably help a little if I shed a little light on Madie’s previous stay at OCH as to why we are so optimistic about her second shot at inpatient rehab.  I try not to overshare when it comes to difficult times in Madie’s recovery because I have faith that one day Madie will read all of these updates and I don’t want her to ever feel like she was a burden on any of us.  While I would have never picked this journey, God picked it for our family for a reason and we are happy to walk it with him.  That being said, our time at OCH following Madie’s discharge from Children’s was difficult.  She cried, a lot.  We held her, a lot.  Most days consisted of Matt or myself holding her from around 6:00 a.m. until she fell asleep around 8:00 p.m., with the exception of when she was in therapy.  When she was in therapy sometimes she cried (a lot) and sometimes we would spend her entire 30 minute session trying to get her hands open or get her arms pulled down away from her chest.  We had to keep her room very quiet and we had very little light in her room in order to keep stimulation at a minimum as her brain was slowly awaking from its coma.  Almost the entire time Madie was at OCH she was in a coma or near coma state.  She wasn’t smiling, she wasn’t really focusing and it was really hard to bear at times.  But, we remained positive and faithful that we would see improvements and we did, they were slow and small but they were there and we rejoiced each one.  Then about a week before we left, the crying slowed and we started to see small smiles, she started to focus on faces and then…it was time to go home.  But we were ready and I truly believe Madie was ready and needed to home with her family, together.  We have remained positive and as involved as we possibly can in Madie’s recovery since coming home in November.  She has made such amazing progress thanks in great part to her current therapist and I am so glad that they agree that this will be a tremendous benefit to her recovery.  We will put our current home health agencies on hold while we are gone and once she is back in inpatient therapy she will get ST, OT, PT at least once a day, five days a week.  I will be taking off work and spending most of the time in Dallas with Madie.  Matt will stay in Marshall and help keep Molly Michael busy.  We have had several friends offer to keep Molly Michael and we have one of her favorite babysitters that will be helping us all summer.  Matt will also bring her to Dallas on the weekends because I know Madie and I will miss them both so much.  Please pray that this next step in our journey is productive and positive. 
Look for lots of upcoming updates.  We have Madie’s follow up EEG (which I have a good feeling about) and a neurology appointment on June 2-3, Madie’s 2nd birthday party on June 11th (although her actual birthday isn’t until june 25th) and then OCH on the 13th.  We are so very thankful for each of you that continue to reads these updates, pray for Madie and our family and leave us encouraging messages.  We couldn’t do this without your love and support. 
With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie  

Sunday, April 24, 2011

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 14th.  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       

Friday, March 18, 2011

Proud to be puke free

I have so much exciting Madie news to report I’m not sure where to start.  First, we got a call last week that we had finally gotten approval for Madie’s stroller/wheel chair and her gait trainer.  We are so excited to see how she does with both.  We have been using a chair that OCH let us borrow and we are so very grateful to have had it.  Madie loves to be outside and since she weighs 27 pounds carrying her around the entire time isn’t really an option.  The only problem is that it weighs a ton!  Madie’s new chair is very lightweight and it will give us the freedom to load and unload it easily so we can start taking Madie to a lot of new and exciting places.  Pretty sure a trip to the zoo is in our very near future!  We are hoping that the gait trainer and chair will both be delivered with a couple of weeks.
Madie is doing GREAT on her new formula.  She hasn’t been throwing up at all, PRAISE THE LORD.  We have gotten the length of her feed down to an hour and fifteen minutes, and our hope is that starting this week we can get her feed down to one hour.  This is a goal we have been trying to reach since Madie had her G-Tube surgery at the beginning of October and it feels amazing to be so close to meeting it!  Once we meet that goal I suppose we will shoot for an even shorter feed with longer time in between.  Now that we are getting Madie closer and closer to an hour feed she is also making BIG improvements accepting things by mouth.  This week Madie has taken drinks from a sippy cup, eaten animal crackers and ritz crackers.  She still isn’t ready to have a tube feed replaced with an oral feed but we are moving in the right direction.  Matt and I continue to be amazed by her progress and we are so thankful that God continues to show us that hears all of our prayers.  Ashley, M’s speech therapist also got her to take a couple of sucks on a pacifier.   Ashley said we are going to have to have a big party when we finally get to remove Madie’s G-tube.  I think big party would be a pretty large understatement. 
We hear Madie make new sounds and noises everyday but she is still not using words besides an occasional Mama or Dada, which she doesn’t repeat consistantly.  She is very much aware of what you are asking her though.  If you ask Madie where Mommy, Daddy, Molly Michael, Jenny, MomMom, Pop, etc. are, she will immediately turn her head, find you and give the biggest grin.  If we are sitting in the living room when Matt gets home from work and I say “Daddy is Home!” she will sit up, smile and look at the front door.  We have started trying to teach her some sign language and if you say “eat” she will sign “eat”.  She is so smart and you can see the wheels turning.  We know that big things are in store for her.
Occupational Therapy and Physical therapy are also going really well.  She gets a little stronger every week and is becoming more tolerant of her tummy time.  She still is not a huge fan but we are seeing improvements and that is all that matters.  While Madie was doing some exercises on a therapy ball and Molly Michael was “assisting”  I mentioned that we used to spend an entire 30 minute therapy session just trying to get Madie to stretch her arms and legs out and lay on a therapy ball.  To remember times like that and see her know is incredible to say the least.  We firmly believe that Stephanie(OT) and Phil(PT) are such blessings to Madie and the results we are seeing back up that belief.  We are also BEYOND blessed to have Madie’s nurse Jenny.  She takes such wonderful care of Madie and Matt and I are so grateful to know that she loves Madie and wants to be part of her getting better. 
This past week has been Molly Michael’s spring break.  She got to spend one day at the office with Daddy, which from what I hear was filled with many tiny candy bars courtesy of all the sweet ladies that work with Matt.  She and I spent one day together in Longview.  We had donuts for breakfast and then went to The Mud Hut and painted a few ceramic masterpieces.  Then Wednesday we spent the day at home because Molly Michael told me that if we didn’t leave the house she didn’t have to brush her teeth.  EVERY day we argue about her brushing her teeth.  I tell her every day that she has to brush at least morning and night EVERY DAY, but for some reason it isn’t sinking in.  I am sure I am not the only mother having this problem but man oh man it is frustrating! 
Yesterday, Matt and Molly Michael went camping with our friends the Ellis’.  Madie and I stayed home because they CAMPING, like camping with no electricity, in a tent.  So I took one for the team and stayed back in the AC with my bed, laptop, cell phone, iPad, DirecTv and other fantastic amenities that they are without.  They have been gone less than 48 hours and I am beyond ready for them to come home.  Madie and I have enjoyed our one on one time but we want Daddy and Molly Michael home because we are lonely without them.  It has been way too quiet around here! 
I have a new prayer request for all of you.  A family that we go to church with and that were a source of strength for us after Madie’s accident needs your prayers.  Their son Anthony has been transferred to Children’s in Dallas for the second time in two days.  You can read his complete story and get updates
here.  Please continue to pray for and follow Charley Rae’s story as well.
Also I sit here typing this update and watching our local news, they just did a story that a 2 ½ year old drowned tonight in his family pool.  Even though I have no clue who these people are, PLEASE say a prayer for his family that they will seek and find comfort through God during this horrible time.  The news mentioned that he was playing outside with his 4 year brother and his mom went inside for just a moment.  My heart hurts for this family and I am reminded once again what a true miracle I have sleeping in the room next to me.  Perhaps, I’ll sneak in one more kiss and quick thank you prayer to the Big Guy upstairs  when I go in to give her her midnight meds…
With greatest gratitude,

Kristin, Matt, Molly Michael and Miracle Madie