December 28, 2012

It's all normal to them

   We have always been very open with the girls about everything that is going on with Sadie.  We make it as simple as can be, not to give too much info to scare them, just the basics.  We let them be free to talk about whatever they want, whenever they want, to whomever they want.  I don't hide my emotions from them so they know it is ok to show their emotions.  At first, I was a little worried about how to answer their questions, but I soon found that they (kids in general) are very simple thinkers.  What I thought was going to be a big discussions with difficult answers turned out to be a few sentences, easy answers and that was it.  I was pretty relieved and welcomed the simplicity of their minds.  It is kinda of refreshing.  I do not have to go into much detail and thought with them like I do with adults.
   Over the last year I have watched Chloe and Aubrie grow and blossom into amazing, big hearted, sweet little girls.  They are always thinking about Sadie and watching out for her every little move.  They are her biggest cheerleaders and her biggest protectors.  If she does anything, and I mean anything, they cheer for her.  "Yay, Sadie smiled" "Yay, Sadie lifted her head" "Yay, Sadie pooped" "Yay, Sadie looked at me" "Yay, Sadie grabbed her toy".  You name it, they are cheering for her.  I love to see the love they have for her.  They would even tell strangers in the store when we first brought her home from the hospital "Don't touch her, only look with your eyes, she's fragile and she does not need your germs." At first I thought we created little monsters, but it was cuter coming from their mouths rather than mine.  It gave them a sense of responsibility for their sister and made them feel like they had an important role as an older sister.  I would just smile at these strangers that the girls told to stay away.  They also would notice when people would stare at her feeding tube coming from her nose.  They would say to them "that is how she eats, she is not sick."   I am always amazed at how wise beyond their years these 2 little girls are.
   I also have noticed how they play with their dolls.  They play with their dolls the same way I "play" with Sadie.  For example, we used to have to hold a syringe up attached to her NG tube to gravity feed her.  One day I noticed Aubrie holding her arm up like the statue of liberty, I asked what she was doing,  "feeding my babies".  I laughed.  But why not? That is how she sees me feeding her sister, that is her normal.  I also would see them over by my breast pump holding the tubes up to their chest "why" I ask. "I am pumping milk for my baby".  Or how they always are putting their babies on their tummies and patting their bottoms (that is how we had to sooth Sadie down most of the time) or they would pretend to put eye drops in their babies eyes.  All normal for them. 


   This is a doll that Chloe "made" for Sadie.  To most of your eyes it looks like green paper taped to a dolls nose.  But it is really an "NG tube".  She taped it under the nose and by the ear just like I did with Sadie.  When she gave it to Sadie she said "now you have a baby the looks just like you".  Tears flowed from eyes.  Really?!  Most adults wouldn't have thought to do something like that.


   Aubrie goes with me to every Dr's appt with Sadie.  Every ABM appt.  Every test Sadie has to have done.  She sees everything, asks a million questions, and is just very observant.  Aubrie is always playing Dr with her babies and always just being a little mommy to them.  Well last night I found her playing with her baby.  Not playing Dr, not playing mommy, but playing therapist.  She was pretending to be Miss Amy who is the ABM (Anat Baniel Method) practitioner that works with Sadie weekly.  It was so sweet.

   So why most kids are playing house and doing their dollies hair and feeding them with a bottle, my children are feeding their babies with syringes and doing therapy with them.  It's allllll good,cause it is alllllll normal for them.  At least they will be well rounded human beings.

More lessons taught by Sadie, but this time to her sisters.

Corneal anesthesia

  Ever heard of it?  Me neither.  That was until Miss Sadie came along.  Let's talk about her eyes.  This kinda goes along with my last post about her not feeling pain. Sadie cannot feel her eyes.  We discovered this when she was about 4-5 months.  I thought she was just a brave, non complaining little girl.  I would wash her hair and water would get in them and she would never whimper or blink away the water.  She would pull on her eyes and stick her fingers in them, but I thought it was because her NG tube was taped to her face close to her eyes.  I thought it was kinda strange, but it never dawned on me that something serious was wrong.  I was looking into her eyes one night just thinking about life and staring at that sweet face of hers when I realized she had not blinked in awhile.  I decided to have a "staring contest" with her to see if maybe I just had not noticed that she blinked (cause really, who pays attention to a persons blink reflexes? not me).  She won.  The next day, she won again.  Hmmm, this isn't right.  I blew on her eyes, no blink.  Ummmmm, this really is not good.  The next day I made an appt with her opthamologist.  I told him my concerns, he did his tests, turned to me and said "yep, she can't feel her eyes."  Thanks, Doc  I could have told you that.  But my main question was "why, what can we do about this and what exactly does this mean for the future of her eyes".
  Why?  Our eye's are controlled by cranial nerves.  Most of our cranial nerves are attached and start in our pons (part of our brain stem).  Since Sadie's pons are underdeveloped, that obviously means that her cranial nerves are also underdeveloped. What part of her eyes are affected by this?  Amazingly not her vision.  Sadie actually has very good vision. She tracts motion and lights appropriately, makes good eye contact, and her emotions reflect what she sees (if shes sees happy, she smiles, etc).  It does affect her blinking (she does blink, it's just not appropriately like you and me), her tear/lubrication formation, her sensations to her eyes (like touching them with a finger or water), and how much she can rotate her eyes (from left to right, and up and down, mostly her right eye has this issue).
  What can we do about this?  Unfortunately not much. Science hasn't figured out how to do cranial nerve transplants.  So all we can do is care for her eyes.  The treatment plan at first was every two hours rotate between eye gel/drops and eye antibiotics and washing out her eyes every time.  That was a lot of work.  Luckily, after all the abrasions and scratches were cleared up off her corneas, we changed her treatment to washing her eyes at least 3 times a day and putting eye ointment or eye gel in them.  It is working great.  We have not had anymore eye abrasions.  Thank goodness!!  The eye Dr also wanted to put her in arm restraints so that she couldn't touch her eyes.  I said absolutely not.  The poor girl can't eat by mouth, can't hear, unsure if she can taste and smell, and he wanted me to take away her hand, more importantly her thumb, the only enjoyment that this girl had.  I don't think so.  I will take my chances.  I agreed that if her eyes got worse or became scratched again, then I would take it to the next level.  Luckily, she learned quickly to leave her eyes alone (plus it helped that we removed her NG tube permanently and she had no reason to grab at her face).  Every once in awhile we will see her hand up there, but the girls are quick to move her hands (they are so protective of her).  The eye Dr also said that if all else failed we would sew her eyes semi shut.  OMG!!! This was not option in my mind.  This just pushed me and my family to be even more conscience about where her fingers were at all times and training her to keep them away from her eyes.  So far it's working.
  What exactly does this mean for the future of her eyes?  The opthamologist will always be a big part of Sadie's life.  Luckily since the abrasions have been under control we haven't had to see him recently.  Only God knows what the future will hold, but for now we are doing our part to help keep those eyes as healthy as can be and at this point that is all we can do.

December 26, 2012

Merry Christmas (a day late)

Merry Christmas!!
 
 
 
  Sadie was pretty sleepy this Christmas holiday, but I did manage to get a few pictures of her awake and happy in her Christmas dress.  She absolutely hated this dress.  She has never complained about clothes before, so not sure why it started this day. She was completely happy and laughing, but as soon as I put this dress on her, she started complaining .  She shortly fell asleep after her hissy fit and when she woke up she was happy. I took some pics and then as soon as I was done she started complaining again.  I took the dress off.  All smiles and giggles again.  The next day at another holiday party.  Same thing (almost like Ground Hogs Day). Sadie was happy, put the dress on her, she got mad cried for awhile, fell asleep, woke up happy, was happy for a few, through a fit, took her dress off, as happy as could be.  WHATEVER! At least I got a few cute pics in the dress.
 
 
Something about those Christmas lights.  Every time we were around Christmas lights, Sadie's head was turned as far as possible to look at them.
 
 
Again the Christmas lights!
 
 
I love this picture. Sadie looks so sweet and innocent holding onto her reindeer and gazing at the Christmas lights. 
 
 
Chloe and Aubrie left cookies and milk for Santa.  Chloe wrote the note by herself, while Aubrie picked the cookies.  I think they were making sure they were on the nice list at the last minute.  :)
 
(for those that can't read a 5 yr olds creative spelling it says "Thank you Santa for the presents. Enjoy your cookies and milk")
 


December 20, 2012

Sadie doesn't feel pain

  Sadie is very weird and very unique.  I do not mean that in a rude and thoughtless way.  We all know that I love her with every ounce of my being.  People get upset with me when I say that she is weird, but... she is.  Let me explain.
  Sadie doesn't feel pain at least I don't think she does, in fact I know she doesn't.  If she does she must have the highest pain tolerance imaginable.  Sadie pokes herself in the eyes, doesn't even whimper.  She grabs her face and hair, not a sound.  She gets her immunizations or has blood drawn, nothing.  Teething, not even a sign that she is getting another one.  She has had skin and muscle biopsy's, and surgery twice and required no pain meds except for Tylenol or Motrin (and I'm not sure I wasn't giving them to her to make myself feel better).  Her vital signs didn't even reflect pain.
  It's weird.  She is lucky.  How many of us wouldn't kill to never have pain again?  But with this "luckiness", comes a different set of issues.  Imagine if you break a bone and had no idea, imagine if you cut yourself seriously bad and bled out (over exaggerating a little), what if she was having some kind of an "attack" be it pancreas, liver, appendix, heart, etc... See what I'm saying?  This is not a good thing.  That means that myself and other people that care for her have to be on their game at all times. 
  See what I mean?  Sadie is weird and has some very unique medical issues.  These odd things are what makes me love her even more.

December 19, 2012

Tubes and hearing tests

   Since Sadie was born her first ENT said that her hearing tests showed she had fluid in her ears, but he also said her ear canals were too abnormally small to do anything about it.  I switched ENT's.  If you're not willing to help my baby, see ya!  Her new ENT agreed with me that we needed to get the fluid off her ears.  So yesterday she had tubes placed in her ears.  The ENT said it was a very good thing we did because she had nasty, thick fluid that came out.  It did not show signs of infection, so I was happy about that.  Afterwards, while she was still sedated, they did an ABR test and an OAE test to check her hearing to see if anything changed after the tubes were placed.  My hope was that with the tubes placed, maybe whatever sounds she could hear would not be muffled or if there was pressure in her ears that would be relieved.  My secret wish was that the Dr would say "a miracle happened, she can hear just fine. She has no issues".  Unfortunately, that wish didn't come true.  The test showed the exact same results.  Not even a little bit of a change.  She still has auditory neuropathy/deaf.  I can't lie, my heart sank a tiny bit.
  But this feeling is hard to explain.  I would be lying if I said I am thrilled out of my mind that she can't hear. I would love if she could hear.  At the same time, I definitely don't think this is the worst thing in the world.  This will be a big HUGE change for our family, but I think I know we can handle it.  Chloe and Aubrie are young and are so open and excited to learn new things.  I think they will love it.  For me and my husband and the rest of the extended family, it will be a little bit more difficult.  I know everyone will be willing to learn (we are very blessed to have such a supportive family), but getting used to always talking with our hands will be a little bit more challenging.  I think it will feel awkward at first just because we don't know what we are doing and as adults you don't want to feel stupid, but just like everything else in life it will soon become second nature.

December 17, 2012

Angels too soon

 Twas' 11 days before Christmas, around 9:38 when 20 beautiful children stormed through heaven's gate.

their smiles were contagious, their laughter filled the air they could hardly believe all the beauty they saw there

They were filled with such joy, they didn't know what to say they remembered nothing of what had happened earlier that day.

"where are we?" asked a little girl, as quiet as a mouse. "this is heaven." declared a small boy. "we're spending Christmas at God's house."

When what to their wondering eyes did appear, but Jesus, their savior, the children gathered near.

He looked at them and smiled, and they smiled just the same. then He opened His arms and He called them by name.

and in that moment was joy, that only heaven can bring those children all flew into the arms of their King

and as they lingered in the warmth of His embrace, one small girl turned and looked at Jesus' face.

And as if He could read all the questions she had He gently whispered to her, "I'll take care of mom and dad."

then He looked down on earth, the world far below He saw all of the hurt, the sorrow, and woe

then He closed His eyes and He outstretched His hand, "Let My power and presence re-enter this land!"

"may this country be delivered from the hands of fools" "I'm taking back my nation. I'm taking back my schools!"

Then He and the children stood up without a sound. "come now my children, let me show you around."

Excitement filled the space, some skipped and some ran. all displaying enthusiasm that only a small child can.

And i heard Him proclaim as He walked out of sight, "in the midst of this darkness, I AM STILL THE LIGHT."

~Author unknown
 

Twas' 11 days before Christmas, around 9:38 when 20 beautiful children stormed through heaven's gate.

their smiles were contagious, their laughter filled the air they could hardly believe all the beauty they saw there

They were filled with such joy, they didn't know what to say they remembered nothing of what had happened earlier that day.

 "where are we?" asked a little girl, as quiet as a mouse. "this is heaven." declared a small boy. "we're spending Christmas at God's house."

When what to their wondering eyes did appear, but Jesus, their savior, the children gathered near.

He looked at them and smiled, and they smiled just the same. then He opened His arms and He called them by name.
 
and in that moment was joy, that only heaven can bring those children all flew into the arms of their King

and as they lingered in the warmth of His embrace, one small girl turned and looked at Jesus' face.

And as if He could read all the questions she had He gently whispered to her, "I'll take care of mom and dad."

then He looked down on earth, the world far below He saw all of the hurt, the sorrow, and woe

then He closed His eyes and He outstretched His hand, "Let My power and presence re-enter this land!"

"may this country be delivered from the hands of fools" "I'm taking back my nation. I'm taking back my schools!"

Then He and the children stood up without a sound. "come now my children, let me show you around."

 Excitement filled the space, some skipped and some ran. all displaying enthusiasm that only a small child can.

And i heard Him proclaim as He walked out of sight, "in the midst of this darkness, I AM STILL THE LIGHT."

~Author unknown
 

December 16, 2012

A bubble

I want a bubble.  I want to put my girls in a bubble.  I want to shelter them for the cruelty that this world has been showing us in recent years.  I don't want them to see this world as evil.  I don't want them to be afraid to go to school. I don't want them to be afraid.  I want to keep them innocent and naive for as long as I possibly can.

I want them to see how much good is in people.  I want them to feel free to run and play in the yard.  I want them to love.  Love life, love people.

Ƹ̵̡ӝ̵̨̄ʒ MaLiNi Ƹ̵̡ӝ̵̨̄ʒ


My heart broke in a million pieces watching the news and listening to stories and looking at pictures of these beautiful children and woman in Connecticut who became Angels too soon.  My prayers, thoughts and tears go out to those families.  May they feel Gods love and the love of the many people that hold them so dear to their heart.

 
Our thoughts and prayers go to the victims, their families and all those impacted by the horrific attack in Newtown, Connecticut.

December 14, 2012

Misdiagnosed (sort of)

  When I was told that Sadie had Pontocerebellar Hypoplasia I started my research so I could understand what exactly it was that Sadie was facing.  As I read it, it explained and matched Sadie's symptoms, but not everything was addressed.  There was still a lot about her that wasn't explained.  I kept asking questions to all the Dr's I came across, even random ones that had nothing to do with her hoping that just maybe they have come across some of the weird symptoms on some other patients.  No, such luck.  I never gave up though. Hoping and praying that some day I will come across someone who knows something about Sadie's symptoms or an article that describes Sadie.  It finally happened!
  At the beginning of November I was looking/googling toys for kids with special needs and on the side of the page a random article popped up about abnormalities of the hindbrain.  "What is that?" I think.  I click on it and low and behold an article about a the pons, cerebellum, cranial nerves, and other abnormal things.  It matched Sadie to a tee.  "What, could I really have found Sadie's real diagnoses?"  I read all the symptoms to my husband, he agrees with me, it matches Sadie.  This is too weird.
  Where do I go from here?  I don't have a neurologist for her yet (since I fired her last one).  So my search begins, again.  I came across a research study that the University of Washington is conducting on abnormalities of the hindbrain.  I contact them and they told me to send her MRI.  So I do.  Tuesday I received an email from Uof W stating that yes, they do agree that Sadie has this particular brain abnormality. I was a little shocked.  I was actually right.  My stubbornness to believe these Dr's finally paid off.  I wasn't wasting my time searching for something that may not exist.
  So what is her new diagnoses?  It is called pontine tegmental cap dysplasia (PTCD).  It is an extremely rare disorder.  In fact their is only about 40 children in the world with this diagnoses. Crazy!!!
  What exactly is PTCD?  "Pontine tegmental cap dysplasia (PTCD) is a non-progressive disorder characterized by significant developmental delay, cranial nerve dysfunction, and malformation of the hindbrain. Individuals with PTCD may have a collection of medical and developmental problems including: hearing impairment, ataxia, language and speech disorders, feeding and swallowing difficulties, heart malformations and facial paralysis. The cause of this condition is unknown.The severity of the medical problems varies among patients. Some patients have a good long-term prognosis with normal intelligence and partial speech. To date, the condition has been identified in less than 20 patients."  (This was taken from National Institute of Health, Office of Rare Disease Research. This was written in April 2012.) 
  Since it is a fairly new diagnoses, not a lot is known.  My baby girl is even "rarer" then we thought and is an "extremely limited edition" so I have decided to enroll her in the research project that Uof W is conducting.  It's kinda cool knowing that my baby is going to help "save, cure, discover new things" for the future babies of the world.  I've said it before and I'll say it again, she is AMAZING!!  We are so lucky and blessed.


December 12, 2012

Scholarship for ABM

  Last week we got a letter in the mail stating that the scholarship that I applied for for Sadie was granted!  I am so totally excited.  The therapy that I have her in is called ABM (Anat Baniel Method ).  Since Sadie is not your typical developing child, I didn't feel like the traditional physical therapy was appropriate for her.  ABM is absolutely amazing.  As I have told you before the Dr's told me not to expect much from her, "she probably will not achieve milestones".  Well that is all that this mama needed to hear.  It lit a fire underneath my rear end bigger then the wild fires in Colorado.
  However, my search led no where.  Everything kept leading back to traditional physical therapy, at least until Sadie gets older (I was looking to see if aquatic or horse therapy or some kind of random therapy would benefit her).  "OK! I'll except it, there is nothing else".  Then one day as I was searching for feeding therapy ideas (cause at the time Sadie still had her NG tube in her nose for feedings) I saw a short little sentence about ABM.  "What is that?"  I google it.  Something similar to physical therapy, but a different approach AND it helps to improve the mind. "Hmmm, this sounds interesting. Sadie could definitely benefit in improving her mind and learning how to use her body".
  So I started to look more into it.  The more I learned the more I realized I had to get Sadie involved in this.  At first I thought I was going to have to go to California because that is where Anat's practice is located.  I talked to my husband about the whole thing and we both agreed that some how we were going to make this work for Sadie and I to go to California.  We both will do anything and everything for this little girl.  So we started trying to figure out how this was going to happen and unless we won the lottery sometime soon, it was going to be awhile (a looong while) before we got out there.  That was not good enough for me.  When I want something, I want it NOW (I'm a little impatient sometimes).  So I kept searching and that is when I found Amy Geib (Geib Movement and Wellness).  She is an ABM practitioner located in Portage, MI.  I contacted her and learned more about ABM.  I was so excited after talking to her I wanted to start Sadie that day.  However, she couldn't see her for another week .  I was bummed, but like everything else with Sadie I just have to wait.
  This was one of the best decisions I have made for her (and for me).  We have been seeing Amy since August and we have seen such a huge change in Sadie.  It is very obvious to us (myself and Amy) that Sadie wanted to move she just didn't know how to coordinate herself and what muscles to move.  Amy started working with her at that first visit.  We literally could see her learning and trying the things that Amy was helping her with right away.  It was amazing and brought tears to my eyes and I knew that this was going to work and be perfect for her.  Amy even said that "Sadie is so smart".  No one (besides family) has ever called her smart.  Generally, people do not use smart and special needs together in the same sentence.  The words kinda threw me off at first, but at that moment I realized that was something I needed to hear.  I really only heard negative stuff about her.  So to hear this.... I can't even explain to you how I felt. 
  When Sadie started she could barely hold her head up to a 45 degree angle for a few seconds and she only wanted to be on her belly.  Today, 4 months later, Sadie is able to hold her head and upper body up to a 90 degree angle for a pretty long time, it's the start of getting into a crawling position.  She is also able to role from both tummy to back, and back to tummy (she is slow at it and does it in parts, but she does it).  She will also pull her legs up underneath her, but not at the same time as her arms pushing up yet.  She LOVES being able to move herself.  Sadie gets her biggest pirate grin on and scrunches up her whole body in excitement.  I LOVE IT!  I wasn't sure I would ever see it.
  I would recommend to anyone and everyone to check out this method.  It is for all age groups, for all types of people, all types of disabilities and gives you so much hope when others don't give you any hope.  As for Amy, she is an incredible person.  She knows what she is doing, has become a wonderful friend, and treats Sadie with love and respect. Again I would recommend her to anyone and everyone if you are in the southwest Michigan area

 
Sadie rolling over!
(It's kind of a long video, I don't know how to edit it.  Sorry)
 
 

December 04, 2012

Feeding tube and kindergarteners

  Every Tuesday I volunteer in Chloe's classroom for an hour and a half.  I do this for 2 reasons. 1. In today's society you have to know who your child is hanging around with and have the inside scoop on whats going on and 2. I'm hoping that by bringing Sadie around now while kids are open to new things and aren't really afraid to ask questions they will get to know Sadie and her little differences and the less awkward things will be in the future for my girls when it comes to friends/peers.  Her teacher always has something planned for me to do with them.  At first I thought "what have I gotten myself into", but as the year has gone on I am actually starting to enjoy these kids and getting to know their personalities.
  Today, I walked in the classroom and the kids came running over to talk to Sadie.  Sadie got excited and got her best pirate grin on and giggled a little for them and the kids thought this was the best.  They loved that she was able to smile crooked.  They all tried to smile crooked.  I laughed so hard at these kids for trying to "smile like a pirate" (they heard me call her smile this).  If only they really knew that she couldn't smile "normal".  To them they thought she was doing a cool trick.  I loved it.  So innocent.
  Later Chloe's teacher approached me and told me a little story about a recent lesson that they had.  They had been talking about tubes.  One of the children said "Chloe's sister has a tube".  And at first her teacher said "what?" and then Chloe says "yeah, she has a feeding tube".  Her teacher replied "oh yeaahhh, you're right".  Then the kids all started talking about feeding tubes and asking questions about them.  Her teacher said to Chloe something along the lines of  "what do you think about the feeding tube, or can you tell us something about it"  I don't know exactly what the question was but Chloe's response was "it's cool, she doesn't have to taste yucky medicine, it just goes in her tube."  And the discussion went on from there.  Chloe's teacher said her entire lesson planned changed, she went in a totally different direction but it was the direction that the kids wanted and obviously needed to go in.  She said it was one her best lessons and it was all thanks to Sadie.  I just laughed and said "Sadie is really good at teaching lessons and she doesn't even have to say a word."
  So my plan is working.  Kids are curious, they are asking questions, they are becoming familiar with Sadie's differences.  The earlier and more they know the better off we all will be.


 

December 03, 2012

Thinking outside of the box

  I have always been the type to turn to drugs.  No, not illegal drugs, but the legal ones.  For example, if I have a headache, Tylenol/Motrin: sad, depression pills: anxiety, antianxiety meds: insomnia , sleeping pills: not wanting a baby, birth control pills: vomiting, nausea pills.  I've always been impressed with the fact that we have come so far in the discovery of different diseases and treatments.  I thought if God made people smart enough to make drugs that work, I should take full advantage of those smart people.  I thought (because I was really naive and in my bubble that I talked about previously) that we (the world) were so advanced in medicine and technology.  We could figure anything out.  Boy was I wrong!! After having Sadie, my world and faith in the medical world was shaken, HARD.  I believe it would have been off the scales if it was an earthquake.
  How could no one tell me what was wrong with my baby?  How can they not have a diagnoses for her? Why can't they do a blood test, MRI, CT and tell me what she has?  What do you mean there is nothing I can do to fix her?  I am her mom, I have to fix her, That is my job. 
  Once I got past the fact that the medical world cannot fix my baby (face it, we can't grow a brain yet), I had to start thinking in other directions.  I will help my baby have the best quality of life she can possibly have if it's the last thing I do.  She will have the same chances in life as my other 2 girls will.  They may be different chances or opportunities then the other 2 girls, but she will have them.
  My search began.  I realized that what Sadie will benefit the most from is actual physical movement.  Teaching her about her body and how it moves and making sure it stays as loose as possible.  I do not want her to get contracted and stiff, so I searched for how to avoid this.
  It was like a light went off above my head.  A chiropractor.  Their thoughts are to make sure that the body is all aligned so that everything works correctly and medications should not need to be taken.  Perfect.  Medications won't help her, so maybe keeping her aligned will.  Luckily, my best friend from preschool is now a chiropractor.  I contacted her and with the help of her dad (who is also a chiropractor) and a friend of theirs (who is also a chiropractor) they met Sadie and came up with a plan for her.
  Sadie started to see Dr. Nicole Fausey-Luke (Calhoun County Chiropractic Care Center) around the age of 4 months old.  It was amazing.  We started seeing improvements in her right away, the same day as her first appt.  I was so excited.  And over time, she has stayed healthy.  According to her other Dr's she is supposed to be a sick baby.  Nicole was the first Dr to really give me hope that there was going to be more to Sadie's life then just laying around.  For that I will be forever grateful to her.  She treats Sadie no different then she would treat her own daughters.  Nicole has a huge heart.  I would recommend anyone to go see her if they live in the Battle Creek, MI area. 
  The second thing I found was a therapy called Anat Baniel Method (ABM).  Which is also absolutely amazing.  That is for a different post though.
  So I have learned another lesson from Sadie and that is to think outside of the box.  Even when frustration sets in and certain people tell you to except things the way they are, DON'T!  Their is always something else and someone else to give you HOPE.  And in this case, it was Dr. Luke.  Thank You.