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               

We are family, hang up on the ceiling Sheree

I started a post on the way to Dallas this morning but Madie decided that she thought that wasn’t a very good idea and demanded my attention.  So I will start over…

We headed to Dallas this morning because Madie had a follow up with her GI doctor.  Her vomiting has really improved so Dr. Semrin decided to try her on a new formula.  So we are back to a “normal” formula.  Not even one that is concentrated.  Hopefully we will have a smooth transition and won’t have to take any steps back in her feeding schedule. Please pray that we don’t see an increase in her vomiting!  She is doing REALLY well with her “eating”.  She is becoming much more accepting of different textures.  We have been giving her Mum Mums.  If you aren’t familiar with the Mum Mum, it is a flavored rice biscuit that kind melts in your mouth.  She prefers the strawberry ones and I must admit I tried one and they aren’t too shabby.  I’ve had a few myself.  She is opening her mouth for and taking bites from a spoon as well.  We are still working on drinking from a cup but she still hasn’t quite figured out how to suck just yet, but she is getting close!  We see small advancements in Madie almost daily.   Her coordination is getting better and she reaches, grabs for and picks up everything.  She laughs more and recognizes familiar friends and family immediately.  She will even let other people hold her…if she knows you really well.  We are patiently, but anxiously, awaiting all of the necessary approvals for Madie’s new equipment that will really help her learn a few new tricks.   

We have been taking Madie to Kindermusik and she LOVES IT!  I honestly feel like it is just as important as her PT, OT and ST.  She smiles in amazement for 45 minutes every Wednesday morning.  She laughs and gets so excited when everyone sings.  At one point last week while the entire class was singing shoo-fly , she got so excited that I seriously thought she might bounce right of my arms.  I really need to get her on video so you can see what I mean.  If you have small children, you should REALLY consider signing up for Kindermusik, you can thank me later.

Now a funny story about Molly Michael.  She is in her second year of dance and God Bless, Kristi, her dance teacher.  Molly Michael is FULL of energy as are the other little girls in her class.  Their recital is in April and they have been practicing their little part in the finale.  Molly Michael is showing me her moves and tells me that they will be dancing to “We are family, Hang up on the ceiling Sheree”.  I crack up every time I think of her singing it.  She is such a funny, smart, spunky little girl and we are so lucky to have her.  

Finally, we made a little detour on the way to Plano today.  We stopped in Dallas at the Ronald McDonald House to see Charley Rae.  She looked great!  Charley was just discharged from Children’s yesterday but she will have to stay in Dallas because she needs dialysis 4 times a week.  It brought me such joy to see two wonderful examples of God’s work and the power of prayer sitting side by side.  Please pray for this family and follow their story on her caring bridge page.  Here is a picture of Marshall's Miracles.  Madie was very excited to see Charley and kept trying to grab her face.  This is the only picture Matt got where they were both looking and Madie wasn't trying to caress her cheek.  

Please pray for Madie’s continued healing.  I am still amazed at the number of people who ask how Madie is doing and let us know that they are still praying for us.  We are so grateful for each and every one of you.  God lets us know every day that he is still listening!



Here is a funny little picture of MM.  This happy girl is having the time of her life playing in a mud puddle in our yard.  This same sweet girl playing in the mud is so girly that, with the exception of an occasional blue jean day, she has not work a pair of pants to school all year.  Only skirts!  LOVE LOVE LOVE her! 



With greatest gratitude,

Kristin, Matt, Molly Michael and Miracle Madie              

Happy days are here again

And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.  Colossians 2:16

I know I have missed a couple of weeks and I am sorry.  I really mean to update more often and I know that I would update a few times a week it would so much easier and probably take far less time than trying to stuff two weeks of Skinner family excitement into one post!  So I will do my best.  I actually am sitting all alone in my living room right now.  We went to church this morning and then Madie decided to skip her afternoon nap so she is already asleep.  Molly Michael and Matt are having dinner at Matt’s mom’s house tonight.  So, for a brief moment, it is just me, my laptop and a little Extreme Home Makeover on the TV in the background.  It has been on for approximately 4 minutes and I have cried 38 times. 

Madie has had a great couple of weeks.  We had a great visit with Dr. Semrin, our GI doctor at Children’s in Plano.  We explain to him Madie problems with vomiting over the past few weeks.  He listened intently to everything we have tried and all the problems we had encountered.  We had just changed her formula back to a completely broken down one just a few days before our appointment.  We had seen some improvements since the change but we weren’t sure if it was because Madie’s respiratory issues had started to clear up or if it was because of the formula change.  We all agree that Madie probably doesn’t need to be on this particular formula.  It is designed for children that have a severe milk protein allergy and other issues.  Madie had no issues with milk prior to her accident but this formula is definitely the easiest on her tummy.  So Dr. Semrin suggested we leave everything as is for now and return in a month.  Madie had a rough time on the ride back from Plano and got sick a couple of times and then seemed like she just didn’t feel well the next day.  I think that sitting in car seat to and from Dallas just isn’t the best thing for Madie’s muscles.  Hopefully we can take some time on our next trip to allow her a little time to stretch out.  We have seen big improvements with Madie’s tolerance of her tube feeds over the past few weeks so we are hopeful that we can get her a more concentrated formula after her next visit on March 3^rd.

Last time I updated we were waiting on Madie’s follow up swallow study.  Thanks to all the snow and ice we had in Texas at the beginning of February, we JUST had the swallow study last Wednesday.  I am pleased to report that Madie did great!  She had just finished her feed, she was sleepy and the speech therapist who helps with the swallow study tried to hold her and all those things made for one grumpy Madie.  Madie doesn’t care for people in scrubs.  So if you are planning to try and be friends with her.  Wear something besides scrubs.  So, I managed to get a few bites in Madie’s mouth and while she wasn’t really cooperating, we were able to tell that there were definite improvements.  There was no aspiration.  So the speech therapist and the radiologist told us to give Madie whatever she would eat.  Well, now comes the tricky part.  Now we have to overcome Madie’s sensory aversions.  She doesn’t really like the way most things feel in her mouth.  Everything she picks up, she immediately brings it to her mouth and then makes an awful face.  She has gotten MUCH better though.  She will put her fingers in her mouth and seems ok with liquids and purees.  So now we will focus on getting Madie to eat things with texture and also using a sippy cup.  She seems very interested in the cup but does not have the coordination to suck.  I know that just like everything else, Madie will prove to us that she is a fighter and that she WILL eat and drink again!  Hopefully these things will happen sooner than later so we can get her off of this tube feed!!!!

In other Skinner family news, we are thinking of getting a puppy.  We have decided on a tiny toy poodle.  After all my research, we feel that will be the best match for our family.  I really think that Madie and Molly Michael will both benefit greatly from having a pet.  Matt, while not completely against getting a puppy, is the most nervous about our newest addition.  So I feel like that means the puppy will be most attached to him!  The breeder we have decided to go with has a litter of puppies due sometime around the beginning of March.  Due to their small size these sweet puppies usually don’t go to their new homes until around 10-12 weeks old.  So that means that we probably won’t have our new little girl until maybe the beginning of June.  I kind of feel like an expecting mom with all this time I have to prepare.  We are VERY excited, well I should probably say that Molly Michael and I are very excited.  I told Matt I couldn’t believe we would be hearing the pitter patter of puppy paws soon at our house, I pray that we’ll also hopefully be hearing the pitter patter of Madie’s feet as well.

We pray daily that God will continue to heal Madie.  We also thank God daily for all the improvements we see.  We know that God’s plan for Madie and our family is a great one and we trust that He will continue to support us.  Please remember to keep up with Charley Rae’s story.  We are so grateful for all of you who still pray for Madie and cheer for her on her road to recovery.  As always, please pray for her continued healing.    

With Greatest Gratitude,

Kristin, Matt, Molly Michael and Miracle Madie

Enough already!

As soon as I pray, You answer me; You encourage me by giving me strength.
Psalm 138:3

Before I even get to an update on my family, I want to encourage everyone in Marshall to bundle up and make your way to Cypress Valley Bible Church at 5:30 this evening to attend the prayer vigil for Charley Rae Furrh.  Those of you not in Marshall, take just a moment at 5:30 to say a prayer for this sweet girl and her family.  Pray that her tiny little body will tolerate the dialysis, pray for her parents and other family members and most importantly pray that she finds a kidney donor SOON!  Continue to follow her story here and please leave a quick message for her and her parents.  I cannot explain how much it means to read encouraging words from so many people.  I still love getting new messages and I even go back and reread old messages, especially when times are tough!  It renews my strength to read those messages from the first few days after Madie’s accident and realize just how FAR we have come.  I know Ashley and Drew appreciate all of the support just as much as we do.  Also PLEASE go here to find out if you might be a potential match as a kidney donor. 

Madie is doing really well…for the most part.  She has had a tough couple of weeks with different illnesses.  Last week she had an ear infection that came out of nowhere.  The only reason I even knew it was infected is because she has tubes and I saw the drainage.  She didn’t even give us a warning fever.  We started her on antibiotics and got that cleared up before Matt left to go quail hunting on Friday.  Then poor Madie had a pretty good battle with constipation.  It was awful and I didn’t get much sleep on Friday night.  There was lots of crying and throwing up involved for poor Madie.  GiGi(Matt’s mom) was sweet enough to take Molly Michael on Saturday so she could have lots of attention and I could get some sleep on Saturday night.   Thank the good Lord for Mandy, and her mom Peggy, who came out Saturday and helped me clean out closets.  Mandy’s dad even came over and helped take away five years’ worth of junk for us.  She slept great Saturday night but was back to misery on Sunday.  Finally we got everything moving, HA, and all seemed well.  Monday was OK and then Tuesday Madie woke up with a cough.  When Madie throws up a lot, she tends to aspirate some which leads to lung issues.  So we headed to town and got a chest x-ray.  No pneumonia but her pediatrician went ahead and started her on antibiotics.  Our electricity went out Tuesday night so we had to pack up in the dark and head to GiGi’s house.  No fun with a sick baby, Molly Michael thought it was awesome to walk around with flash light though.  We came back home yesterday morning and Madie was obviously not feeling well but she slept really well last night.  Then just to keep us on our toes, she woke up with a fever and a lot more snot this morning.  So went back for another x-ray and another visit with our fantastic pediatrician, Dr. Turner.  Her lungs were still a little hazy but no pneumonia and not any worse than Tuesday.  We have added in a second antibiotic and hopefully we are now officially on the road to recovery.  Madie’s nurse Jenny has been a great help and I know she is more than ready to not smell like Madie’s vanilla vomit.  I really hope one day Madie gets furious with me for sharing her constipation issues with all of you!  PLEASE pray that Madie gets better quickly because we are heading to Plano on Tuesday to see our original GI doctor.  We are hoping to get some answers on Madie’s reoccurring vomiting issues.  I will update everyone after her appointment and let you know what we find out.

Now, time to brag on my sweet Molly Michael for just a minute.  She is such an amazing little 4 year old…most of the time, ha!  She talks to Madie a lot and sometimes says the sweetest things to her.  One night I was holding Madie and she had just fallen asleep.  I asked Molly Michael if she wanted to give her a kiss goodnight.  She did and then she said, “Madie, I wish you could walk again.”  I, of course, started crying.  Molly Michael wiped my tears and looked at my so sweetly and said, “dry up those tears Mommy.”  She was also home Monday night when a friend of ours came to the house to do a little speech therapy with Madie.  Molly Michael went to Madie’s room and got all of her speech stuff and told Summer that she ALWAYS gets the speech therapy stuff out.  That night Matt was lying down with her at bedtime she told him that when she grew up that she wanted to be a speech therapist like Ms. Summer so she could help Madie get better.  LOVE HER.  I am so proud of both my girls. I am proud of Madie for being such a strong fighter and proud of Molly Michael for being so compassionate and loving of her sister.  There are also about a million other reasons I am proud of them, but I am sure you all knew that!

Thanks for continue to pray for our family.  We are still amazed that so many people are still following Madie’s journey and we know that all of your prayers are still being answered because we see improvements in Madie every day.  Also please pray that this weather doesn’t knock out our electricity again or that it at least gives us enough time to go get a generator before it knocks out our electricity again. 

With Greatest Gratitude,

Kristin, Matt, Molly Michael and Madie           

Here is sweet Madie Sunday morning.  She is really sweet and happy even when she feels like poo because she can't poo.  :)



And here is "The Lip".  Madie gives "The Lip" to get anything she wants.  She is actually sad in this picture as you you can se from her tears, but we see "the Lip" turn to a smile in seconds most of the time!  It has taken months to get this on camera because usually as soon as you get the camera out she starts smiling.



Oops, I did it again...

A person who lives in faith must proceed on incomplete evidence, trusting in advance what will only make sense in reverse.    – Phillip Yancey

I feel like it should be Friday but it is only Tuesday.  Yikes.  I make a promise to myself what seems like every week that the following week will be my week that I get myself and my life organized.  It never fails that once “next week” gets here, I am just as unorganized as I was the week before.  So maybe next week will be THE week…we’ll see about that.  Matt is going quail hunting this weekend and I have enlisted the help of my wonderful friend Mandy to help me organize a couple of closets here at home.  So at least if my life isn’t organized, my closets will be…for a little while at least.  OK, enough about me, I’ll get to the good stuff.

Today is the January 25^th which means it has been 5 months since the accident.  Sometimes it seems like it has been a year and other days it seems like it has been a few weeks.   Madie is continuing to improve and live up to her nickname of Miracle Madie.  She is starting to show a little more interest in eating.  She definitely lets us know if there is something that she doesn’t want to eat.  We are still trying to get her feeds worked out and she has been having some trouble tolerating her first feed every morning.  We have rescheduled our follow up visit with the GI doctor for next Thursday.  Hopefully he can give us some answers or suggestions on what we might do to help keep that morning feed in her tummy.  We are tired of smelling like vanilla pediasure.  Ashley, who is Madie’s speech therapist, has order another swallow study and we hope to schedule it for next week.  Please pray that Madie shows some improvements since her last SS which was about 2 months ago. 

Madie is also showing improvements in both physical and occupational therapy.  Phil, our physical therapist, has set new goals for Madie since she has already met her original 6 month goals.  We are now working on sitting, standing, walking and crawling.  Madie is getting stronger and we are so excited to see her tackle her new goals.  Then there is Madie’s occupational therapy, which is getting much better, but Madie still puts up a big fight.  She really makes poor Stephanie, the OT, work hard for her money!  We also got a new nurse.  Her name is Jenny and we think she is wonderful.  We can already tell she is going to play a big role in Madie’s healing and we feel so blessed that God has placed her in our lives.    

Since I missed updating last week I didn’t get a chance to request prayers for our close friends Brooke and Lance.  Their youngest son has been in the hospital since last Wednesday but finally got to go home today.  Please pray that Layton continues to heal and they can get back to a normal routine. 

We are also requesting prayers for some other friends in Marshall.  Please pray for baby Charley and read her story on her caring bridge website.  You can follow her here.  Please pray for this family and their sweet little girl.  They are going through such a scary time and they need your prayers.  Please leave them a message because we still find so much strength and comfort knowing so people are praying for Madie and I know they would appreciate it as well.

I’m heading to bed because I am planning to take Madie back to Kindermusik tomorrow for the time since her accident.  We love Ms. Donnis and Molly Michael and Madie have both always loved KM.  Madie thinks it is hilarious when Molly Michael dances and sings around the house so I am hoping that a room full of kids dancing and singing will be equally as hilarious.  Jenny is going to come with me so if it turns out to be a disaster; at least I will have a little support.  Wish us luck.  I wish I could bring Molly Michael with us, but she will be at school.  We’ll see how the first few classes go and then maybe she can skip a day of Pre-k to join us.  I will try and remember to bring the camera so we can get a picture of all the fun! 

Thank you, as always, for keeping up with Madie’s story.  We know that Madie is a true miracle and proof that God hears our prayers.  That being said we have faith that God will continue to take care of sweet Layton and Charley.  

With Greatest Gratitude,

Kristin, Matt, Molly Michael and Miracle Madie

 I tried for AT LEAST 15 minutes and this was the best picture I could get of two crazy little girls.  The problem is that Madie follows Molly Michael everywhere she goes and Molly Michael is always on the go!

       

Hey 2011, where did you come from???

Oh my goodness.  Where did December go and how are we already a full week in January?  We have been home two months now and it has really flown by.  I am so excited to have the next few months with no major school holidays so I can finally get REALLY organized.  This week was supposed to be my first full week in a while to get things done and what happens…SNOW DAY.  Oh well, we will have a fantastic day playing in the snow and watching movies.

Christmas day marked 4 months since the accident and Madie is doing amazing!!  She continues to improve every day and show everyone that God is listening to and answering our prayers.  It has been so long since I updated that I don’t even know where to start.  I promise I won’t go that long again!  Madie’s swallow is getting stronger.  We feed her once or twice a day but only for therapeutic reasons not nutritional.  We have definitely seen improvements though!  Her speech therapist hasn’t mentioned when she will order a follow up swallow study but I am sure she will let us know when she thinks Madie is ready.  I’m not sure if I mentioned this in my last post but we finally found a wonderful dietician.  She has been an absolute blessing to us.  Madie is finally on a regular formula and getting 5 feeds a day.  She is at her goal for volume and now we just need to get the feeds down to an hour with two hours in between.  That will give us more freedom to take Madie places without having to bring her feed pump with us.   

Madie’s occupational therapist is still working on strengthening her arms and head control.  You can see large improvements just when Madie sits in your lap.  She holds her head up much better and uses her arms to try to hold herself up.  Her coordination is also really improving.  If Madie sees something she wants, then she will reach for it…and most of the time she gets it!  She can roll to her tummy and we even found her sleeping on her stomach this morning. 

About a week ago, we got Madie’s standing frame.  She loves it.  She hasn’t been in a stander since we left OCH so it is amazing to see her progress!  She also loves for us to stand her up without it.  She puts pressure on her legs and will even attempt to take steps.  She is still very much like a noodle but the fact that she knows what she is supposed to do speak volumes to all of us.  We went to Dallas to see Madie's physical medicine and rehab doctor last Thursday and she was very impressed with Madie’s progress.  She lowered her dose of baclofen, which is a muscle relaxer.  The doctor wants us to watch her for 2 weeks and then let her know how she is doing and at that point she may lower the dose again.  Other than that, she said everything looked great and that she would see Madie again in three months.  While we were in Dallas we went to have Madie measured for and ordered a stroller.  We also started the process to order a gait trainer, which is a piece of equipment that will help Madie learn to start to walk again.  We put her one in to make sure we had the right fit before ordering and she knew exactly what to do!  I can’t wait until we have one at home so that she can get lots of practice.

I am sure that I am leaving off a long list of accomplishments that Madie has achieved since you heard from me last so you will just have to take my word that she is proving she is a fighter.    

Molly Michael is continuing to show us that she is the world’s greatest big sister.  Although she has her moments when she doesn’t want to share the spotlight, she is usually very willing to help out when asked. We try very hard to make her feel included and she loves to be the therapy helper when she is home…especially for speech therapy because that usually involves candy.  She had a lot of fun playing in the snow today.  I will try my best to get a few pictures of us outside building “snow sand castles”.  I tried to tell her that we could just call them snow castles since they were made of only snow but she was having none of that.  I am sure by tomorrow afternoon as the snow turns to slush we really will be making snow sand castles.

Again, I am so sorry that I haven’t updated in almost a month.  I am going to try to post an update once a week now.  We are still so thankful for each of every one of you who still ask about Madie and let us know that you are still prayer for her and our family.  I wish you could all see her in person so that you could understand that God is listening and answering our prayers.  We hope that everyone is having a wonderful new year.  Keep the prayers coming!  We are so grateful for them all.

With greatest gratitude,

Kristin, Matt, Molly Michael and Miracle Madie

Here are pictures of Madie in a standing frame taken exactly 3 months apart.  I think pictures show just what a HUGE miracle Madie is!

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