Ho Ho Ho...Merry Christmas!

OH.  MY.  GOODNESS!!!  I really didn’t mean to go missing for two weeks!  Things have been so very busy around here.  We’ve had the Christmas parade, birthday parties galore, school, work, Molly Michael’s Christmas program and more.  I am determined to spend the next week getting what I need to get done at work and the rest I will be spending time with Molly Michael, Madie and Matt.  So I will be completely honest and tell you that this will probably be the last you will hear from me until the 26thish. 

Madie’s swallow study went much better than I expected, but of course, I am no expert.  I honestly thought they would have a hard time getting her to swallow anything but I was wrong.  She did really well especially with puree and liquids on a spoon.  She did aspirate some liquids when they were given to her by syringe.  The good news is that when she did aspirate, she would cough to protect her airway.  If she didn’t cough, that would lead us to believe that she did feel that it was going down the wrong way and they call that a silent aspiration.  If she were to have a silent aspiration we would have no idea if she was aspirating or not when trying to reintroduce solids so thank the Lord for that cough!  Our speech therapist Ashley suggested that we start trying to give her 8 or so small bites of baby food twice a day.  We can already see improvements in her “eating” from when we started two weeks ago.  Madie’s head control is getting much better and we are starting to see some improvements with coordination.  She loves her baby dolls and you can now lay one beside her and she will roll to pick it up.  We have taken her out and about to a few different places and she has done great.  She just takes it all in and looks around at everything and everyone.  We took her to her Supper with Santa, which was great by the way, and we took her to the Molly Michael’s Christmas Program.  It brings me such joy that so many people that have been following Madie’s story have had a chance to see how wonderful she is doing.   

Now I will brag on Molly Michael and Trinity Pre School just a tiny bit.  I thought I would talk to Molly Michael about what Christmas means and why we celebrate it.  I am pretty sure by the end of the conversation she had taught me a few things.  Trinity has done a great job of teaching these precious. kids about Christmas.  Molly Michael told me all about the Angel telling Mary she was going to have a “baby Jesus” and how they went to Bethlehem.  She told me that they had to stay in a manger and there was no bed for baby Jesus so he slept on hay and Mary wrapped him in a cloth because there was no blankie.  Everything I asked she had an answer for.  I was really impressed with her interpretation of Christmas. 

We are so excited about Christmas this year.  Last Christmas Madie was only 6 months old and this time last year I expected to have two little girls running around, both of them unwrapping presents, playing with toys and fighting over toys.  While that isn’t exactly how things will be this year, I am confident that it will be the way things will be again soon enough.  We are so grateful for all of God’s gifts that he has given our family this year and we consider ourselves very lucky and blessed to still have TWO little girls this Christmas.  I have no doubt that our home will still be filled with lots of smiles and laughs on Christmas morning.  I know that Molly Michael is looking forward to ONE more Christmas of getting to open gifts for her AND Madie! 

Please pray for Madie’s continued healing.  Also please pray for safe travels for everyone who will be on the road for Christmas.  We hope that everyone has a stress free, Merry Christmas!

With greatest gratitude,

Kristin

 

My future's so bright...

Rejoice in the Lord always. I will say it again: Rejoice!  Philippians 4:4

Our doctor appointments last were wonderful.  The GI doctor didn’t make the changes to Madie’s feedings that we were hoping for but only because he wants us to meet with a dietician.  Hopefully we can get that done SOON but the one thing everyone agrees on is that we need to get Madie off of this 12 hour continuous feed.  The speech therapist believes that if Madie were on several feeds a day it would allow her to have the feeling of hunger and hopefully that would assist in reintroducing things to her by mouth.  The GI doctor also took Madie off several medicines that he felt she didn’t need which Matt and I were OK with.  She is now only getting Baclofen, which is a muscle relaxer, Keppra to prevent seizures and Prevacid.  The best new we received at that appointment was the doctor saying that he thought Madie would recover from her accident.  He didn’t say how much but still he said “recover” so I will take it! 

We started Thursday morning with Madie’s physical therapy before we headed to Dallas.  Phil, Madie’s physical therapist, told me that she was very impressed with Madie and that she had met almost of her goals that she had originally set for Madie…for 6 months!  How incredible is that?! After PT we headed to Dallas a little early so we could stop by OCH to see one of Madie’s nurses that we still keep in touch with.  We saw lots of familiar faces that had taken care of Madie during our stay at OCH and they were all impressed with her improvements in the month she has been home.  Most of the therapists who helped worked with Madie were on an outing but we did get to see Liz, Madie’s OT.  She was SHOCKED at how much Madie had improved.  We will be back at OCH on January 6^th for an appointment and I have no doubt that Madie will surprise them again.

After we left OCH we headed to Children’s to meet with Dr. Castro, Madie’s neurologist.  She has been with Madie since day one but hadn’t seen her since we left Children’s and at that time Madie was still in a moderate coma.  She came in the room and Madie and I were playing peek-a-boo.  Madie was laughing and Dr. Castro’s face lit up.  She said she was so surprised because that is not was she was expecting at all!  Dr. Castro had received the report from Madie’s EEG she had done at Baylor about a week and half before she was discharged from Baylor.  At the time of that EEG Madie had shown some improvements but nothing too major, however, a few days after the EEG she started to really progress in her recovery.  Dr. Castro stated that she had been so sad to see Madie because after reading the reports from OCH she didn’t feel like she was getting better but when she saw her smiling, laughing, holding her head up and moving her arms and legs so much, she was excited!  She examined Madie and kept commenting on how great she looked.  She decided that she would leave Madie’s meds as they are right now, which is the lowest dose for her weight, and then do a repeat EEG in 6 months.  If things look good then she would see about getting her off her seizure meds at that time.  Then she told us that she thought Madie’s future looked GREAT!!!!!! Part of me wanted to scream, “THAT IS WHAT WE HAVE BEEN SAYING SINCE DAY ONE!”  Matt and I have told every doctor that has talked to us about Madie that we understand that while things may not always look promising for her, we have faith that God is in control and that we hope Madie would be one of miracle stories you hear about.  The fact that Madie survived her accident at was a miracle in itself and we have kept the faith that her story wouldn’t stop there.  Just about every doctor has looked at us like we are two crazy people who don’t understand what is going on with their child.  The entire time we were at our appointment Dr. Castro, she look happy for Madie and not like she felt sorry for her and I will never be able to explain how absolutely amazing that felt!  We understand there may never be a 100% guarantee that Madie will make a full recovery but to hear a neurologist say that Madie’s future looks great is the next best thing.  God is so good.

Molly Michael had a wonderful time at Disney Princess on Ice.  We sat on the front row and I was a little worried that my sweet princess would make a run for it and try to join the production, but she sat, waved and watched with amazement.  We went with her friends Sloane and Julia (and their moms) and they were so cute and sweet.  It is so neat to watch their faces as REAL princesses skate and sing right in front of them.   

Tomorrow Madie will FINALLY get her swallow study.  Please pray that she does well enough that we can start to reintroduce things to her by mouth.  As always please pray for Madie’s continued healing.  We are so thankful that all of you are still keeping up with Madie’s journey.  Our prayers are being answered so keep them coming. 

With Greatest Gratitude,

Kristin, Matt, Molly Michael and Madie  

I know I need a tan and you are probably wondering what this picture of Madie staring into space is, but this is Madie staring at herself in a mirror (that you can't see) AND she is sitting up ALL by herself!

And here is Cinderella doing her thing at Princess on Ice...

The Amazing Madie...

“If you can?” said Jesus. “Everything is possible for one who believes.” 

Mark 9:23

Have I mentioned lately that Madie is AMAZING?  She has done really well the past week.  We had a GREAT Thanksgiving with the family.  Even with a crowded house full of people she was calm and happy.  It is hard to believe that a little over a month ago we could have never done that with Madie.  She is continuing to show improvements in all her therapies.  She can roll to her tummy now but doesn’t have the upper body strength to hold her chest up although she can turn her head from side to side while on her tummy though.  Madie is also really moving her arms and legs now and we can no longer lie her down on her pallet, walk away and find her in the same place you left her.  She will have scooted off the pillow and will be sideways.  If you put a toy beside her she knows to hit it to make the music and lights turn on.  She is also opening both hands and starting to grab things close to her…mostly her shirt, blanket and G-tube.  So we have to watch her close to make sure she doesn’t yank that out!  She still has to work hard at getting her arms and legs to do what she wants, but we can see the wheels turning and can tell that she is without a doubt heading in the right direction.  Madie loves loves loves to have all the attention for herself and she watches my every move and would prefer that I am holding her or sitting next to her.  If I start to get up she will stick out the bottom lip and scream.  She is either happy or extremely mad and doesn’t really seem to have an in between at the moment.  She is a smart little lady and definitely has all of us figured out!  

Tomorrow Madie has her appointment with her new GI doctor.  I am hoping that we will also get to meet with the dietician.  The plan with the original GI was to get Madie back to bolus feeds and off of the amino acid based formula.  I am hoping that if we can get her back to bolus feeds that we can start doing more things outside of our house without having to take her feed pump with us.  So say a little prayer that since Madie’s throwing up seems to be under control that we can start moving back towards multiple feedings instead of one 12 hour feed.  Madie should also have her swallow study early next week.  We know she is swallowing but the study will tell us how weak or strong her swallow is and what she might be able to tolerate by mouth.  Hopefully we will get good results from that because I know a few speech therapists out there that are itching to get some goodies in Madie’s mouth!  Thursday morning we will head to Dallas for Madie’s neurology appointment.  I am assuming this is just a follow-up because if I remember correctly our neurologist, Dr. Castro, stated that Madie would be on her seizure meds for 6 months and then they would perform a repeat EEG.  I am very nervous about going because I prefer to only believe that Madie is going to keep getting better and make a full recovery and I feel like the neurologist is sometimes the one person that can crush those beliefs.  The good news is that Dr. Castro has always been very nice and always seemed to genuinely care about Madie and the even better news is that Madie is a COMPLETELY different baby than she was when Dr. Castro saw her last.  I am really quite excited to show her off.  Please pray that we also get positive results from this appointment.

Madie continues to amaze us a little more each day!  I love to look at her from day to day and week to week and see her progress.  It is crazy to think how great she looked a week ago and then look at how REALLY great she looks today.  We are so grateful that God continues to answer prayers and bless our precious Madie. I will do my best to update Friday and let everyone know how the appointments went.  Molly Michael and I have a busy weekend that includes a few birthday parties and a trip to see Disney Princesses on Ice.  She has already asked MULTIPLE times if she can be a princess on ice and if she can wear her Cinderella costume.  I told her she can of course where her Cinderella costume but you have to know how to ice skate to be a princess on ice to which she replied, “I can, I know how to ice skate.”  Wish me luck because I am sure she will continue to try and figure out a way to get on the ice.  Please pray that Madie tolerates the ride to and from Dallas and as always pray for Madie’s continued healing.

With Greatest Gratitude,

Kristin, Matt, Molly Michael and Miracle Madie 

Gobble Gobble

Be joyful always; pray continually; give thanks in ALL circumstances, for this is God’s will for you in Christ Jesus.   1 Thessalonians 5: 16-18

Happy Thanksgiving!  We had a great day spent with our wonderful family.  I started writing a list of all that I am thankful for and it didn’t take me long to realize that it would go and on forever and I would inevitably leave someone or something important off.  For that reason I decided to skip my list and I’ll just elaborate on a few of the obvious things we are thankful for. 

First and foremost, we are thankful for God.  We couldn’t have made it through the first day without him.  Being able to fully trust that God is in control has made every day manageable.  Our faith has been tested but it has only gotten stronger.  We know without a doubt that God has big things in store for Madie.     

There have been several people who have asked me how we stay so positive through all of this.  Matt and I decided from the start that we would do everything we could to be optimistic and rely on God to get our family through this heartbreaking moment in our lives.  I honestly can’t imagine how we could get through this any other way.  I don’t see how it would help any of us of if we focused on the things that MIGHT be wrong with Madie or that COULD go wrong.  Instead of being sad about what has been taken from us we are most thankful for everything we still have and all that we have learned over the past three months.  I’ve learned I am so much stronger that I could have ever imagined.  I’ve learned that Matt is so much more than my husband, my best friend, and the world’s best dad.  He is my soul mate and I know that God put him on this Earth to be with me.  I’ve learned that Molly Michael is an incredible little girl as well.  She has consistently surprised me at how well she has handled everything that has happened.  And then there is Madie… I am so thankful for her and the fight she put up to survive and the fight she has since put up to get better.  She amazes me every day.  It hasn’t been that long since we thought it was amazing that her right arm was starting to relax and she would open her hand a little when she was asleep.  Less than a month ago we thought it was great that we could get Madie to smile if we tickled her and now she smiles all the time.  You don’t have to do anything besides wave to her from the across the room.  She used to scream and cry anytime she was awake and was only quiet when she slept.  Now, she is happy all the time!  She can roll side to side and as soon as she realizes what to do with her arm she’ll roll all the way over.  Our nurse and all of our therapists talk about how much she changes from week to week.  Proud doesn’t even begin to express how I feel about her.  I know I have every right to be sad and mad about all that has been taken from our family, and sometimes I have those feelings, but more often than not I am thankful and grateful for all that has been given back to our family.  We are blessed indeed.

We are thankful for our family, friends and community.  I won’t even begin to name everyone, mostly because there are so many people that have done things to help our family that we don’t even know about.  Marshall, TX came together like I have never seen to help when we needed it most and we will never forget that.  We are thankful for everyone who has wanted to help not only Madie but our family as well.  There is no way we could have done this alone.  Madie is so lucky that are so many people out there that want so badly to be a small part in her recovery.  We hope everyone knows that our family is so appreciative of everything everyone has done for us and that we plan to pay it forward and help others in need in any way we can.

I could go on and on and on because there are so many other things we are thankful for not only today but every day.  I am so happy that we got to spend today surrounded by family.  I hope that everyone had a fantastic Thanksgiving.

Ok, one last thing I am thankful for…an Aggie win. Way to go Ags!

Please continue to pray for Madie’s continued healing.  She has an appointment with her new GI doctor in Shreveport on Wednesday and then we will be heading to Dallas on Thursday for her follow up Neurology appointment.  Please pray that we get positive results from both. 

With greatest gratitude,

Kristin, Matt, Molly Michael and Miracle Madie

    

Drumroll Please...

Well... I have decided to start a blog to keep everyone up to date on all things Madie and Molly Michael too.  I know I mentioned this on Caring Bridge and I got lots of suggestions that the blog name should be Miracle Madie.  While I agree that she is indeed a true miracle, my hope is that many, many years from now I will still be writing this blog and it will be filled with stories about my family and our everyday normal lives instead of only stories about how Madie is recovering from her accident.  So for that reason, I went with The Skinner Sisters instead of Miracle Madie.  My friend Brooke and I tried to come up with a far more creative name, but apparently we weren't creative enough because the 50 other names we tried first were already taken!  I will post here AND on Caring Bridge for awhile and eventually just put the updates here.  So here is today's CB update.  And since those of you reading this are my very first followers (should you decide to actually follow my blog) I will share a very exciting picture from today that happened after I posted my caring bridge update.  Madie almost rolled all the way over and was really quite happy about it.  Before today she had only made it to her side.  She also learned that if she hits her new toy that it will light up and play music.  She is one smart cookie!   I hope both of you reading this enjoy it!