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 25^th:

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 

Finally...an 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

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 26^th 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

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 2^nd 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

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 

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 2^nd 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

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 3^rd 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 13^th 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 2^nd birthday party on June 11^th (although her actual birthday isn’t until june 25^th) and then OCH on the 13^th.  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