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.

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")

 



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.

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.

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
 

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.



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.

 



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.

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)

 

 

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.


 

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.

Limited Edition

Love it!!  I think I am going to refer to Sadie as a Limited Edition.  There are VERY few kids in the world that share similar brain issues as her (and I just found them in the last couple weeks) and as far as I know (and the Dr's) there are no kids that have all the exact issues as her.  So as far as I am concerned she is the only one from a Limited Edition.  How lucky am I ?!

Yes, I have changed

If Sadie was a typical child....

  I would be living the way I always have.  I would still have 3 beautiful girls, married to my husband, living in the same house with one dog and one cat, have nice vehicles, and working as an RN at a job that I love.  Be surrounded with family and friends that we love and get along with and I would be taking my girls to school and dance and to the park and to play places and anything else I wanted to do with them.  I would be living the "perfect" dream.  I would still be living in a naive bubble.  That nothing "bad" could ever happen to me.

 

But Sadie is not a typical child...

  She burst that bubble.  I do still live that exact same way.  I am living a dream.  However, it is no longer the "perfect" dream and I am no longer naive.  Bad Different stuff has happened to me and I am now living the "realistic" dream.  Is it the perfect dream? No.  Is it a bad dream? No.  Is it a realistic dream? Yes.  Is my life better being less naive? Yes.  Have I changed? Yes. 

 

  It used to bother me (a lot!) that people said that I changed after I had Chloe.  "You grew a heart, you became softer".  I, however, did not see that I changed.  I was the same old Tammi that I always was.  Yes, I had more responsibility. Yes, I no longer partied.  Yes, I no longer was selfish and thought the world revolved around me.  But I still saw myself as me.  Now that Sadie has been on this earth for a little over a year, people again are saying to me "I can't believe how much you have changed."  At first I thought "really?  again?" and I got offended.  I don't know why I did, but I did.  I think cause it makes me think that they thought I was cold or heartless or that I didn't really care, that I was selfish.  It makes me think that they didn't think very highly of me. It made me sad.  But as the year went on and more people said it to me I thought (and pardon my language) "Hell ya I've changed!"  I have a child that has taught me more in the last 13 months of my life then I have learned in the last 33 yrs prior to that.

How has Sadie changed me?

(I read this on another special needs mom's blog and I was going to say something similar to it, but she said it so well and described exactly how I felt.  Why try to reinvent the wheel when it works perfectly, right? I hope this mom doesn't mind.  Obviously, I tweaked it a little bit.)

 

  I would never know that love like this existed. There are no words to explain how you love someone when you realize that their time is limited. I wouldn't realize that that is how everyone should be towards the ones they love, healthy or not.

  I wouldn't appreciate the health God has blessed Chloe and Aubrie with and how grateful I am for it. I wouldn't have known what an amazing heart God gave them and that Sadie's illness has taught them to be so kind, compassionate and caring.
  I would never know that so many children suffer so much each day and have heartbroken families that endure more than they should in ones lifetime.  I would have never known how strong I really am. A strength given to me by God, knowing that I could never do this without Him.

  I would never know the full extent of God's love. I wouldn't realize that without Him, my life is meaningless. I would have lived my life in vain, thinking that having the "smartest" children is what makes a good mommy, thinking that our success in life would be having a nice house, money in the bank and cute clothes. Not knowing that what determines a person is not what they have but what they do with what they have.
  I would have looked at children with disabilities as a tragedy instead of what they truly are, a blessing from God Himself. I would have looked at the parents with sympathy, silently thanking God that it wasn't me in those shoes instead of knowing what an amazing opportunity that they have been given.
  I would have never realized what absolutely amazing people there are in this world. Ones that bend over backwards to help us in every way. Our family, friends, Sadie's therapists, and people we haven't even met.
  Sadie has forever changed my life. While I have cried more than I thought could be humanly possible, its only because of the love that I have for her, a love Christ instilled in me, a love that Christ shows me each day. If I had the choice, there is no question I would want Sadie to be typical/healthy.  Would I want to be the person I was before all of this? No, not at all. I will spend the rest of my life praising God that he thought of us so worthy to have a special blessing like Sadie. I will pray that God shows me what he wants me to learn from this, ask him to show me His purpose so I can fulfill the role He wants for me.
  Because of Sadie, I know true love, true happiness.  I am so blessed to be Sadie's (and Chloe and Aubrie's) mommy.

So have I changed? Yes!  I am proud of it and am no longer offended when people say it to me.  Instead I say "Thank You"

*Look at all the lessons Sadie taught me this time.  She is simply amazing!*

New changes

  Up to this point Sadie has been a "normal" infant.  Yes, she has a feeding tube, but she's not on it 24/7 and can be disconnected at anytime.  She does not need to be kept in a bubble because of health issues, I use an infant carrier/car seat, she can go in and out of stores without a thought, I buy her formula at the store just like any other mom.  No one would ever know that my child is any different from their child.  My life is "normal" (at least in those aspects).
  The time has come for some changes.  Changes that are going to change my life again. Not that they are bad changes, but still they are changes.  I will have to tweak my life a little.
  The first change is now that she is 1 yrs old her vitamin and nutrition requirements have changed.  Most babies move to cow milk and start adding more table foods, juice, water.  Not Sadie, she has moved to a new formula.  A formula that I can't buy at the store.  A formula that can only be delivered by a medical supply company.  A formula that is especially made for babies that are only tube fed. This is a reminder that she IS different.
  The second change is that she needs to move into the next size car seat.  Her infant one still fits her, but it's getting a little to heavy for this mama to carry.  I went shopping and found one that rides both forward and backwards and has extra head and back support.  One that actually says that it is recommended by moms of special needs children.  ANOTHER reminder, she is different.
  The third change is that I had to buy a new stroller.  Sadie is not ready for a wheelchair, but she needed a little bit more support then the stroller I currently have.  Again ANOTHER reminder.
   All parents have to get new car seats, food, strollers.  I had to also with my other two. This is no different, right?  WRONG!  The big deal is this....
  I no longer will be able to run into a store.  With an infant carrier I take her out in the carrier, put her on the front of the cart and shop.  Now, I will have to put her in a stroller for 2 reasons.  1. She absolutely hates to be held for more then a few minutes.  I do not know why, but that's reality.  2. I can not put her in the front of the cart like a normal baby/toddler because she does not have very good head control yet. This freaks her out, which causes her to arch her back, which causes a lot of drama, and takes a long time to calm her down.  Sadie is not exactly the easiest baby to calm down.  So if I go shopping by myself I will have to put her in the stroller, which means I can no longer push a cart.  I can only use a hand carrying basket.  Which means I can no longer buy larger items or a lot of items.  As all parents know, it's easier to go shopping with as few children as possible.  So I do the weekly grocery shopping and get all the essential house things while the 2 other girls are at school.  I will no longer have the privilege to do this.  I will have to go when my husband is home in the evening and who wants to go shopping in the evening after a busy day of everything else.
  I know this all sounds soooo ridiculous when it comes to the big picture.  I have my daughter, she is alive, she is healthy.  Who am I to complain about such silly things. This is just a change that I have to adjust too.  I will.  This will not kill me.  With all this being said it reminds me of one of my favorite sayings.  "If you don't like something, change it.  If you can't change it, then change the way you think about it" (quoted from Mary Engelbreight). That is what I have to do.  Change the way I think about it. 
  So that is what I am doing.  Changing the way I am thinking about it.  Instead of seeing this as a bad thing I will look at the fact that I can no longer spend a lot of money when I go shopping.  I can not go shopping as frequently or conveniently as I once could.  I will be able to go shopping COMPLETELY kid free.  I will be able to get out of bedtime duty at least one more time a week. :)  The formula is now covered by insurance so I can save some money AND it will be delivered to my door.  The girls will be able to have a little more quality daddy/daughter time in the evening one more day a week.  I will no longer break my back carrying that heavy car seat or carrying a bunch of groceries in the house.
  That is my start to thinking differently.  Change is hard for all of us in one way or another.  Some people adjust better then others.  I'm generally in the middle of the road when it comes to change.  I don't like it at first, but I can usually see why the change needs to occur and that it really is not as bad as it seems when the change is first introduced.

Mixed feelings

Sometimes people will say to me "I'm so frustrated with my kids, they won't stay in their bed at night"  I would like to say "be glad they are able to get out of their bed and walk".  I would give anything to have this be my biggest problem.  At the same time it's nice to hear about normal, easy problems. It keeps life normal.  Especially when I have 2 typical developing children.  At the same time, I want to scream and say "get real, this will pass enjoy it while it lasts, there are way bigger and worse problems that you could have".  Oh, how I look at things so differently now.

Metabolic/mitochondrial crash

  So last week I told everyone about Sadie being sick with some sort of a GI bug.  Come to find out the Dr thinks she was in some sort of a "metabolic/mitochondrial crash".  I don't really know how she came to this conclusion, but that's what she said.  I explained everything that happened, the time period, what we did, and how she responded.  Dr. said it sounds more like a "crash"  then a GI bug.  She said that if she wouldn't have come out of it or if we would have done blood work while she was sick all of her levels that are associated with mitochondrial disease would have been way off.  I had a choice to have her blood drawn to see if her levels are back to normal.  If they aren't normal then we can see how such a "short lived crash" affects her body by how far off her numbers are.  I choose not to have her blood drawn because 1. she is doing much better, still a little off, but better and 2. she has horrible veins.  The last time they drew her blood, it took 20 pokes.  Ridiculous!  I was not with her while this was happening because she was under anesthesia at the time for a procedure.  They are lucky she was out and that I wasn't with her or it would have been stopped.  So anyways, that is why I didn't have her blood drawn. 
  So for those that are wondering what a "crash" is, I don't really know.  I can tell you what she was doing.  It started with her just being fussy, a little gaggy, but she was doing ok with her food.  Then she became a little more sleepy, wasn't making eye contact, wasn't doing any of her new skills she's been working on, was becoming increasingly gaggy, wasn't being her normal easy going self.  Then she turned to lethargic, couldn't tolerate her food (or pedialyte), no wet /dirty diapers, was very pale and waxey looking, and she was extremely fussy. Lethargic and fussy in the same sentence doesn't really go together, however it was like she was really out of it, but she wasn't comfortable. Make sense?  So after this went on for the entire day she calmed down and fell asleep.  She slept, and slept, and slept. While she was sleeping I was giving her pedialyte in her g-tube, which she was accepting and not gagging on.  So I kept her hydrated while she slept. She slept for 32 hrs straight! It was crazy.  She would wake up while I changed her diaper and put her in different positions and then she would fall right back to sleep.  After that 32 hrs she woke up and was wide awake, alert, making eye contact, cooing, giggling, and was tolerating her regular formula.  It still took her a while to get back into working on her skills and she was pretty stiff, but she came out of that by the next day.
  So after that conversation is when the Dr came up with the fact that she thought it was a "metabolic/mitochondrial crash".  She said all that going on with no fever and that she popped out of it after the electrolytes (pedialyte) were given does not sound like a GI bug, but a "crash".  What?!  I've never heard of this and I am an RN.  Why didn't anyone (Dr) tell me to look for something like this?  So after I got over the fact that I've never heard of this, I asked what I was supposed to do.  She replied that next time this happens I need to take her to the hospital and get IV dextrose and a lot of IV vitamins.  OK, good to know this now.
  So over the weekend I asked my coworkers and googled m/m crash and no one has heard of this.   So is this something my Dr made up?  Does she just have experience with other kids and this is what works for them?  I'm not sure.  I did find other parents that have described very similar situations with their children that have a mitochondrial disease and they do call it a mito crash, but there is no official medical articles/journals that describe a "mito crash".  After that conversation I felt very guilty about not doing more, but at the same time I brought her out of it on my own and she is doing great (except for the cough).  So I decided that there is nothing I can do about it now, and I learned something new about the disease and my daughter.  I can only go forward from here.

PS. Another lesson learned from Sadie!

"As long as they are healthy"

   I remember I ran into an old friend at the very end of my pregnancy with Sadie.  She knew absolutely nothing of what was going on with my baby and it was not something that I went around sharing with everyone.  We talked about when I was due, and if it was a boy or girl, and what names we had picked out.  You know, all that typical pregnant conversation questions that you have with someone.  We laughed about different things and compared pregnancy stories.  At the end of the conversation she said something that no one else had said to me (probably because most everyone knew about what was going on with the baby and just avoided the subject or avoided me).  She said "The only thing that matters in the end is that the baby is healthy, right?"  I just smiled and replied "Yep".  Those words echoed in my head for days, "as long as they're healthy, as long as they're healthy, as long as they're healthy."  I wondered how many times I had said that to someone who knew that their baby may not be "healthy" when they were born.  I know that this girl had not meant to upset me, and she had no idea that she did cause I walked away smiling.  That should not have been an upsetting statement, but it was to me (at the time). I wanted to become defensive and yell, so what if she isn't?  Is that not ok with you?  Are you going to dislike my baby?  Are babies only accepted if they are healthy?  I know it was just my hormones, but that statement made me angry.  Looking back on it, it was ridiculous.  At the time, though, that is how I felt.  I became soooo angry with a completely innocent person.
  "As long as they're born healthy"  That statement rings a whole new tune to me. As I've learned a child can be born with abnormalities and still be healthy, but does everyone see it that way?  I certainly didn't before she was born.
   Two lessons learned by Sadie 1. that statement is not that great to say to a pregnant woman, cause you just don't know and 2. abnormalities do not necessarily mean sick, they mean that God just mad them differently.


 

Ugh!

  So Sadie is sick, again.  I guess the Dr's and I jinxed ourselves.  She has some type of a GI bug.  She hasn't been able to keep anything down all weekend.  She would cry every time anything would enter her stomach and she would gag and gag and gag.  It was horrible.  The only thing that would calm her down was taking a bath.  So in about 16 hrs we took 4 baths, including one at midnight and one at 3 am.  After that bath, she threw up again, I cleaned her up, gave her another message and some Motrin and she fell sound asleep.  In fact, she is still sleeping and it is 3 pm.  I think she is just catching up on her sleep because she has not had very good sleep in the past 60 hrs and she hasn't had her vitamins for her mito disease so that could be why she is so sleepy too.
  However, I think she is turning the corner today.  Yes she is sleeping, a lot, but thanks to that G-tube I can still give her fluids.  So starting with a little pedalyte this morning and increasing it all day seems to be working.  She's not crying or gaging so this is all a good sign. Yesterday, she couldn't even tolerate the pedalyte.
  I did have to cancel her tube surgery for tomorrow.  I was a little bummed. I really want to know if it is going to change her hearing even the slightest bit.  But I didn't think being dehydrated, being off her vitamins, and having a slight upper respiratory problem would go over very well with the ENT or the anesthesiologist, so we will just reschedule when she is feeling better.  Hopefully, it will soon.  Prayers needed.  Thanks!

WOW!

   Another good Dr visit.  I'm really not sure what to do these days with all these good comments from Dr's.  I might go into shock if this continues.  The one today was priceless.  Remember that Dr that made me cry (hard) at the very beginning of this journey.  The one that told me not to expect much from Sadie and I told her to just wait and see, my daughter will prove her wrong.  Well we saw her today.  An hour and half she spent with us.  Going over everything and more.  This is what she said to Sadie "Well you have exceeded our expectations, you have skills we would have never imagined that you would have, we are pleasantly surprised with your development and health, you are making me eat my own words, what else are you going to prove me wrong on?"  So of course I had to get my dig in and said "See, don't underestimate any child.  The love and will power of a mother will over power the medical world.  She still has more to prove to you.  Just wait and see!"  I smiled and walked out.

Premature Awareness Month

November is Premature Awareness Month.  The Dr's say that Sadie was premature.  They say that she was born at 36 wks 4 days.  I personally don't think that she was.  I think I had her at 39 wks.  But whatever!  She was IUGR (inner uterine growth restricted), so she was small and had similar issues to what a preemie would have and obviously she has birth defects.  The March of Dimes not only supports research for prematurity and birth defects, and promotes healthy babies, but they are a major support for families while they are experiencing the nightmare of the NICU and they support different programs in the community.  Since they are so invested in helping us to have healthy babies the least we can do is return the favor and donate money to the cause.  You never know when this could become a personal issue to you or someone you love.  You can donate year round any amount or they have a big walkathon every year where you can create teams and raise money that way.  Their website will help you learn how to promote your team and other useful things to help you on that journey.  I have a link on my home page or you can go to www.marchforbabies.org for more information. 

Sadie is healthy!

  Sadie had her 1 year check up last Friday.  It's crazy to think it's really been a whole year, but anyways... she is finally on the charts.  Hallelujah!!!  The Dr's can get off my back.  The Dr's have been so obsessed with getting her on the growth chart since the day she was born.  They were driving me crazy!!  "We have to add more calories to her diet."  That is what I heard for months.  I thought to myself: who cares if she's not on the chart, as long as her curve is going up, that is all I cared about.  Well the Dr's didn't see it that way.  "We need to make sure she is getting enough calories to get her body to grow and gain weight and have enough energy and fat to help her brain develop to the best of it's abilities."  I understood that, but she was starting way behind your typical developing baby, so stop trying to compare her to them and putting her on "their" chart.  So frustrating to listen to the Dr's compare her, but now they can't, well not completely.  I guess technically they still can when it comes to her height and her head circumference.  BUT her weight is in the 10% for children her age.  I can celebrate  that.
   The Dr then proceeded to check her all out, check her development. The Dr then stops, turns and looks at me.  She says "This little girl is amazing.  She is nothing like we would expect her to be like with the abnormalities that she has with her brain.  She is behind developmentally, but she is working on things at her own speed.  She is a determined baby and she wants to move and I'm pretty sure she will get her way if she is anything like her sisters.  Her sisters are strong, independent, sweet girls with high self esteems.  Sadie is no different then them, she is just on her own time table."  I was shocked.  Not that I didn't know this, but I'm so used to getting bad news when I go to the Dr's that is just threw me off guard.  As I was trying to choke down tears, the Dr then continues "and she is the most healthiest special needs child that I have.  She is 1 and she has not been seriously sick, she's never been to the hospital/ER, she doesn't have seizures, she doesn't have respiratory issues, yes she can't eat orally, but she handles her tube feeds very well, she smiles and laughs, and like I said she has determination. I know you don't keep her in a bubble so she must have a very good immune system.  I'm not sure what you are doing with her, but keep it up."  All I could say was "Thank You".  I was trying not to break down in tears cause that is what I really wanted to do.  All the work I've done with therapies and Dr's are proving to be helpful.  Finally somebody recognizes it (other then family).  Then at the end of the appt Sadie got 5 shots!  My poor baby, but guess what?  She didn't even cry.  She whimpered a little bit, but never cried.  Her Dr poked her head back into the room and said "see, I told you they were strong".  (Chloe also had her 5 yr check up at the same time and got 3 shots and she never cried or fought it either)
  When I got to the car, once again I started to cry.  But this time they were tears of happiness.  It only took a year but we finally got a good report from a Dr.

You just don't know

   Many people have said to me that they did not know all this was going on with Sadie. That my actions do not show it. That the words in this blog surprised them. Some were angry that I did not come to them for support. It could be for a couple different reasons. 1. I'm kind of a private person. 2. I don't get people involved with my drama in fear of judgement and sometimes the less people that know things, the better. 3. It's a defense mechanism that my subconscious is doing to protect me. I don't know why I choose not to share all this earlier, probably because it wasn't the appropriate time. Everything happens when it is supposed to.
  I may look and act like everything is fine and dandy but it doesn't mean that I'm not crushed about my daughters health and I hate that she has to fight for everything that comes so easy to others; that man that cut you off on the highway, may have been rushing to the hospital to see a loved one that is dying; that woman that you thought was giving you a dirty look, could have just found out her husband is leaving her and was thinking about the situation; your neighbor that didn't wave back, was in his own world because his wife just found out she was dying of cancer; the woman that walked away from your newborn baby without awing and gushing all over them, is having a hard time conceiving not being rude; that woman that was just caught steeling and you are judging, is a single mom with a deadbeat sperm donor and was just trying to get food to feed her kids; that woman that complains of pain all the time, has a debilitating health issue that you can not see.
  My point is that you just don't know what people are going threw.  What is on the outside, is not always what is on the inside.  Some people are better at hiding it then others, and some could actually learn to hide it a little more.  We are who we are, except others, and try not to take things so personal.  You just don't know how the other persons day, week, month, year, or life is going.  Smile and try to do small kind acts daily.  It really does make you feel good and makes a difference in others lives.

Hurricanes and Halloween

  Hope everyone on the east coast is doing well and are safe and dry and with electricity and heat again.  Who needs Halloween to be scared when you are living a nightmare during a hurricane (or any disaster for that matter)?  Prayers are going out to all those families.  It always amazes me how people come together during a tragedy to help each other out.  It's awesome to see, but it's too bad that it takes a tragedy to make that happen.  Wouldn't it be nice if we could be like that all the time?  Maybe someday we can all get back to being nice to each other all the time.
   I know this doesn't sound right and I don't really know how to word it.  So just please don't take this the wrong way.  My favorite scene/picture from the whole hurricane coverage was when they were evacuating the hospital.  All those nurses and Dr's trying to keep all those patients safe and alive.  Carrying them down multiple flights of stairs and not caring or complaining. However, the one picture that really got me and brought tears to my eyes was when they were transporting those little babies from the NICU and they had to hand squeeze oxygen into those babies to keep them alive.  That's dedication and a lot of heart coming from those nurses (and Dr's). I'm not sure if it's because I am a nurse or because I am a mom to a former NICU baby or both, but it really and truly touched my heart.  It made me proud to be a nurse.  They represented nurses in such a positive way.
   On another note...
   Happy Halloween! It's been a fun few days with party's at the girls school and picking pumpkins and carving them and then trick or treating itself. It's been cold and rainy here just like everywhere else.  I was thinking though, if they are going to make all these cute little princess and fairy costumes for girls and not cute costumes that are warm, then we need to move Halloween to the summer.  The kids are so bundled up that you can't even see there costumes.  So I made the girls get dressed twice.  Once with what their costumes are supposed to look like all cute and stuff, and then I made them put all there warm clothes on with it.  They loved me for it.  NOT!  I included some pictures.  Hope everyone had a Happy Halloween.  For those kids that missed it and were disappointed do to weather, I'm sorry, hopefully they will have a make up night.  More importantly I'm glad your safe and able to read this.



Chloe and her pumpkin

Aubrie and her pumpkin

 

 

 

Sadie asleep as always.  Too much fun and excitement picking out her pumpkin.

Chloe the ballerina midnight butterfly

Chloe bundled up  (refused to wear a hat, went to one house and then asked daddy for her hat.  Good thing he took it with him)

Aubrie the blue fairy (blue is her ultimate favorite color)

Aubrie all bundled up.  She stayed nice and warm and happy.

Sadie my dalmation puppy  (she's actually awake!)

Love the puppy butt!

The Dr's

How many Dr's can one tiny person have?  Well let's see...

1. Pediatrician
2. Neurologist
3. Neurodevelopment
4. Opthamologist
5. Eye plastic surgeon
6. ENT
7.Chiropractor
8. Genetics
9. General surgery
10.  Dentist
11. Cardiologist
12. Ear Surgeon (cochlear implant)
13. Facial/plastic surgery
14. Nutritionist

Soon to be adding an orthopedist and an endocrinologist and possibly a urologist.

She also sees an occupational therapist and an ABM practitioner (it is kinda like a type of physical therapy, but focuses alot more on the brain and nerve connections.)

I think this is absolutely ridiculous.  Unfortunately, she's needs all of them or trust me I would be getting rid of them.  Luckily, we are now down to only seeing most of them once or twice a year.  For awhile we were seeing most of them monthly or every couple of months. I was losing my mind!  I'm pretty sure people thought I was lying to them because every time they asked me to do anything I would say "Sorry, we have a Dr's appt".   Some people understood, others not so much, but we can't please everyone.
  Chloe and Aubrie go to almost all the appt's with me.  The only time they don't is if it is a new Dr or if I know it will be a long appt.  They usually do very well at the appt's because they have the routine down pat, know how to behave and what I expect from them.  The girls also know that good behavior has it's perk when it comes to stuff that we have to do with Sadie.  Usually, they get some kind of "reward".  No, I don't buy them things.  But if time permits we will go to the park, or get some lunch, or go to someones house, or get ice cream, or go to the mall to play on the play stuff, rent a movie, etc...  Sometimes they are just happy with getting a bracelet or sticker at the Dr's office.  That's not to say that we haven 't had a few break downs in the offices, they are human and children after all, but over all they do an excellent job and I couldn't be prouder of them.

 

It's Sadie's Birthday

   Today is Sadie's birthday.  It just blows my mind that a year has gone by already.  All the ups and downs of the year.  The ups are just having her in my life, the downs are all the dang Dr's and diagnoses.  To celebrate her I thought I would put up a few pictures of her first 19 days of life. 

 First time I laid eyes on her.  She was beautiful!

 

Sadie was on C-Pap for about 12 hrs or so.

Daddy's big hand holding her tiny hand.

 

Her first echo of her heart, not even an hour old.

 

This should be a t-shirt on a baby, on Sadie it's a dress.

4 lbs, 15 oz    17 inches long

 

The tube coming out of her nose is an NG tube.  That is how she ate for the first 6 months of her life.

She looks so sweet and peaceful in this picture.

 

Because of her reflux her head needed to be elevated. She kept sliding down, so the nurses built her a sling to keep her up.  It was her own personal little nest.

 

Love her!!

 

We are free!!

Released on Nov 16.  Which is ironic since she was supposed to be born that day.

 

Chloe and Aubrie had no idea she was coming home.  They were so excited and in awe that she was finally home and that she was so tiny.





 

What a long, strange trip it's been!  A trip I would never change, I will never forget and that is far from over.  Happy 1st Birthday Sadie.  I love you!



Comments

I've had a couple people tell me that they have posted comments and that they are not showing up.  So I attempted to figure out why.  I am sooooo not computer savvy.  I'm lucky I'm figuring out how to use this blog stuff.  However, I think I fixed the problem.  I apologize if you have left a comment and I didn't get it.  Try again, please.

Interesting week with Dr's

   Sometimes I get on these kicks where I get frustrated with Dr's because I feel like they are just not doing enough for my daughter.  Sometimes I am content with everything that is going on.  Well recently (the last couple weeks) I went into frustration mode.  So I started firing Dr's.  First was her ENT.  He was a very nice, very gentle,  older gentleman, however, he has not done anything for her except confirm that she has hearing loss.  Well, any idiot could have recognized that.  Sadie has swallowing issues, airway issues, raspy, hoarse voice, questionable fluid in her ears.  But has he looked in her throat?  No.  Has he looked in her ears? No.  Why? because she was upset and he didn't want to make her more mad and her ear canals are very tiny so it was hard to see in them.  Really?  Dumb excuse.  So we went in search for a new one.  We went to see someone that one of my friends recommended.  I told him my concerns and he actually listened to me and did something about my concerns right then and there.  It was amazing!  Low and behold we got some answers.  A couple more pieces to her puzzle.
  1.  He looked in her ears with an itty, bitty microscope.  He could see into her ears, after I was told by numerous Dr's her ear canals were to tiny to look in.  He confirmed that yes she does have fluid in her ears.  Poor girl has had fluid in her ears for at least 8 months. Her last ENT also said that even if there is fluid, her ear canals are to tiny to do anything to fix them.  Well, her new ENT disagrees.  Sadie is going to have tubes put in her ears in November.  She is also going to have 2 different hearing tests done while she is under sedation to see if there is any change.  Do I expect a miracle that she will be able to hear just fine?  No (it would be nice though).  But I am hoping that maybe she will be able to hear a little bit more sound, or maybe less muffled.  I don't know but at least I will know that the problem was addressed.
  2.  He took an itty, bitty scope and went up her nose and down her throat.  Yes, she got mad and hated every minute of it. However, this ENT was not afraid to upset her.  He wanted answers too (or at least he was trying to make me happy.)  Either way, we got answers.  One thing that we questioned was if her vocal chords were partially paralyzed because of the raspy, hoarse, quiet voice.  He visualized them and no they are not paralyzed like I was told.  They work just fine.  So either God wanted her to be more quiet in life or there is more going on inside the voice box that we can't see unless we cut her throat open.  And that is not happening!  But for now I am happy that they are not paralyzed.  The Dr also visualized her airway. Guess what? it's not "floppy" like I was told.  He said that her airway opens and closes just the way it is supposed to.  He thinks the reasons that Sadie "snorts and sounds snotty" sometimes is that she is not swallowing her saliva appropriately and since she is mainly laying down it is just sitting there in her throat and nasal passageways causing the sounds.  I tend to believe that answer since we know she doesn't like to swallow.
  I was so happy when we left that appointment.  No, I'm not happy that she is going to be sedated again for surgery, but hopefully this will give her a little bit more hearing one way or another.  I'm also thankful that he gave me answers to other questions.

  Our next appt was with Sadie's new cardiologist.  No, I didn't fire her other one, I really liked him.  However, he moved to U of M, to design a new patch for the holes in the heart so help avoid open heart surgery in babies.  Anyways, I really like the new cardiologist.  He was very knowledgeable and kind and gentle with her. I also told him that her neurologist is pretty sure she a mitochondrial disease even though it hasn't been proven yet and that I wanted to know what signs to look for in her heart to know if it is starting to be affected.  You would have thought I started a fire under his butt.  He said we absolutely have to find out if Sadie has the disease because that will effect IF she can even have her surgery on her heart.  He now wants to watch Sadie's heart even closer and he gave me a whole list of things to watch for and to get her in immediately if we see any of these signs.  He actually kind of scared me, BUT at the same time I know he cares, he listened to what I said, and he is now going to help me fight to get her diagnosed sooner rather then later with the mitochondrial issue.  Umm, I think I love him.  At least I don't feel like I am fighting that battle by myself anymore.

So the next Dr that I am firing is her neurologist.  But I can't fire him until I find another one that is knowledgeable about her brain abnormalities and I'm hoping that he is also a mitochondrial Dr.  But that is a story for another post.