Pictures and stars from the beginning

School has been so good for Sadie.  It is changing my little girl and she is making leaps and bounds.  They may seem like no big deal to the average Joe, but to me, my family, Sadie's teachers and therapists they are huge!  Sadie's teacher always sends me pics of different things that she does.  She sends me the good and the bad.  That's what I love. Her teacher hides nothing from me and celebrates the triumph with me.

 

 

 At the beginning of the year Sadie had to have a strap over her shoulders and across chest to keep her up, now....

She will sit in a classroom chair with just a belt across her lap...

 

and she will sit in the chair even longer if you put an iPad in front of her.

I'm just standing around watching my teachers and friends.

Her teacher likes to put lots of sensory things on and around her so she is "forced" to touch things.  Sadie loves to touch her own head and feet, so her teacher uses this to her advantage.  It must be working cause Sadie is now more open to touching a holding things.

 

If someone would have told me that Sadie was holding a paint brush and a present bow, I would have said "yeah, right" and laughed in their face, but pictures don't lie.

 

 

This picture and ....

this picture crack me up!

I can just hear her now telling her teacher off for putting her in this thing and trying to make her stand in water. 

 

 

 

 

 

Glasses

Seriously, could she look any cuter?

 

  Sadie has had eye issues her entire life.  Wait, let me rephrase.  Sadie has had multiple eye issues her entire life.  They "dance", both up and down and left to right.  She has corneal anesthesia, were she doesn't feel her eyeballs themselves and doesn't blink appropriately. She also has entropion, which is were her eyelids (mostly her bottom ones) turn inwards causing her eyelashes to rub on her eyeballs. She has cortical vision, which is where she can see out of her eyes, but her brain has a hard time interpreting what she is seeing.  So why shouldn't we add nearsightedness to her list of eye issues? Lol This all sounds like a lot, well, it is a lot, however, we have it all managed.  Sadie has had some fantastic eye dr appts these last few visits.  Her eye muscles are getting stronger, so there is less dancing.  There are no scratches or ulcers due to all the washing and ointments that we use on them.  She is very visually aware of everything going on.  Her tracking of objects is amazing.  And at our last appt the Dr decided it was time to give her some glasses.
  So after the appt we went straight over to the optical place and picked them out for her.  For those that know me well, know I HATE making fashion decisions.  I hate shopping.  Its just not me.  I am so out of the fashion loop its actually embarrassing.  So to have to decide on these glasses and by myself, seriously stressed me out.  I debated and debated. The guy probably thought I was a lunatic, but he dealt with me with a smile on his face.  Bless his heart.  I had to pick between flexable ones or wire ones, rectangle or round, and a bazillion colors.  After a very long debate with myself, you can see the end product.  I think they are super cute and for once, I'm happy with my fashion choice.
  She doesn't seem to mind them.  I can't say I have seen much of a difference with her looking at things yet, but hopefully time will show some difference.  The main problem that we have is that when she turns her head sometimes the glasses don't move with her face so they get all cock eyed, or fall down.  Somehow I have to fix this problem.  I think if I tighten the strap around her head it should help, but the eye glass guy says they are perfect the way they are and not to tighten them.  He obviously doesn't have a special needs child that he lives with on a daily basis that has to wear them and can't fix them themselves.  But that's ok, I'll just brainstorm with my other special needs mommies and see what they have done.  It's all good.

The Valentine Letter

A guest blog post for this Valentines day. Brought tears to my eyes.  It rings true in more ways then one.  Some of you will truly understand the depths of this letter.  Happy Valentines Day everyone!

FEBRUARY 11, 2015 BY JEFF DAVIDSON from the blog Goodnight Superman

No chocolates, no flowers, not even a card.

I know you say to yourself “That’s OK, what I really wanted was a nap anyway.”

But you didn’t get that either.

The dishes still lay untouched in the sink. The baskets of unfolded clothes are stacked on top of each other like planes circling the airport.

Another bill lies unopened on the kitchen counter. You don’t even want to open it tonight so you just leave it there with the others- all unopened as well.

Your biggest hope for this Valentine’s night is that you won’t be changing your child’s sheets at 3am like last night.

You don’t even know what you feel anymore. Sometimes you wonder if you have any feeling left at all. The numbness just envelops you.

Your bed beckons but you don’t have the strength to get up and go to the bedroom, so you just collapse on the couch.

Instead of flowers and candies at work today, you got a call from your child’s therapist and a denial letter from your insurance company.

Instead of a romantic dinner out tonight for Valentines, you had French fries and chicken chunks because for 7 nights in a row that is the only thing your child with special needs would eat.

Somewhere they are dancing tonight. You aren’t even sure your shoes match.

But I watched you today. I watched you lay down your life over and over for that child. I watched you love unconditionally. I watched you give sacrificially.

I watched you give of yourself until there was nothing left of you to give.

I saw everything. I heard everything.

And when you cried yourself to sleep and muffled your tears in your pillow; well, I heard that too. In fact, I collected those tears and kept them in a bottle.

But I heard something else you didn’t.

I know how much you long to hear your son speak. I know the depths of your desires to just hear him say, “I love you mom.” I know how frustrating it is for both of you.

Well, tonight when he lay in his bed, I heard something you didn’t mom.

I heard him go on and on to me in his spirit about how much he loves you, he needs you, and how you are his world.

He and I speak of you all the time. While this world had robbed of him of his ability to communicate to you, he speaks clearly through his spirit to me. We share a language not of this world.

In that language known only to us, he tells me of his love for you all the time.

His body and mind may be disabled mom, but there are no disabled souls.

You are his valentine every day…not just today.

He loves you mom. You give him life. I like to think you got that from me.

I know a thing or two about unrequited, sacrificial love and laying down your life.

And one other thing dear mom.

Never forget. Never doubt. Never ever forget or doubt.

I love you too my daughter. I chose you. I called you. I created you.

My eyes saw your unformed body when I knit you together in your mother’s womb. Your frame was not hidden from me. And you and your child are fearfully and wonderfully made.

I gave you this life because you are strong enough to live this life.

I cherish you. I’ll never leave you. I’ll never forsake you. I will never stop loving you. You are never alone.

Be my valentine.

Your Dad,

God.

A stander of her own

   Santa's big gift to Sadie this year was a stander.  Many people ask me what is a stander?  Well, this is it.  It just helps a child to bear weight and learn the muscles that are used to do this task.  Sadie's physical therapists have wanted one of these for Sadie for so long.  I wasn't to thrilled with the idea simply because Sadie did not have head control and I wasn't going to strap her head down just to keep it up.  But now that she can control it, it's a different story.  I can't say that this is her favorite thing to do, however, since she has been doing this at school and now at home she is more willing to put her feet down on the ground and "stand".  At the beginning of the school year as soon as you would pick Sadie up, she would pull her legs up just like an infant.  Now, you pick her up and she puts them straight down and willing to put weight on them. Don't get me wrong, we still have a long way to go, but we all have to start somewhere!

 

Loves watching her iPad

 

 

 

Her sisters are always proud of her and cheering her on.

I tell them to pose with their sister, and this is what I get. A 5 yr old that loves to be funny and a 7 yr old who thinks she is a teenager and rocking the side pony tail.  Lol!

 

 

Finally, I get a half way decent picture.  :)

Sadie also has been known to fall asleep in the stander.  Apparently, standing is pretty hard work and exhausting.

The new wheelchair

  Finally!  After months and months and cancelling other wheelchairs and appointment after appointment. Sadie finally has her first, very own, wheelchair.  It was a little bittersweet.  I was happy that she has her own, but sad that she has to have a wheelchair in the first place.  I'll tell you what, this special needs journey has so many mixed emotions.  I've never been so sad, but so happy at the same time so many times in my entire life.  I think I need to coin a new word for this emotion.  When I come up with it, I'll let you'll now!  Lol
  Anyways, this is Sadie's new chair.  It is a Convaid Rodeo.  I'm not sure what it is about this wheelchair, but Sadie loves it.  There is never any complaining, and she is so comfy that she usually falls asleep in it or she is wide awake and smiling.  And the color is awesome too.  This past summer the company came out with a bunch of "summer colors".  Which made me happy because the original colors were so blah and had no personality and we must have personality!  Also the dealer of the chairs said that Sadie was the first in this area to have this color.  Again she has to be different and unique!

 

 

Christmas 2014

Merry Christmas!!

 

 

  Before I had the girls I used to have pretty lights and decorations that were all coordinated and the most perfectly trimmed Christmas tree.  I thought it was beautiful.  I didn't really know what beautiful was until I saw my girls decorate the tree with all their homemade ornaments and clumping them in one spot because that's were they could reach and the smile and laughter that they had while decorating it. That's what makes this the most beautiful Christmas tree I've ever had.

  We had to have a two part Christmas because Sadie was in no mood for getting up early.  We tried gently, but it just wasn't happening. Chloe and Aubrie were too excited to wait and it wasn't fair to them to keep them waiting even longer. So we did presents for those 2 girls and us and then a couple hours later we had the girls help Sadie open hers.  It worked out really well.  The girls got to open presents twice and even though the second ones weren't for them, they were still just as excited to open them as if they were theirs.  Here are some random pics of some of their stuff.

 

Aubrie loves rain boots, so she got a new pair.

Chloe loves fashion stuff, and she got a pair of sparkling silver boots.

The girls wanted desks from Santa, so Santa got them new desks.

They were so happy with them.

 

 

 

  This was a fun Christmas for Sadie this year.  Just like she did with her birthday, she payed close attention to what her presents were this year.  The girls would show the wrapped present to her, and then open it for her on her lap as she watched attentively. Then they would show it to her and she would get a huge smile on her face and sometimes give out a laugh or one her happy noises that she gives sometimes.  And she always had a smile on her face.  The girls got a huge kick out of her and loved how excited her reactions were over her presents.

 

This was a flashing light wand that Aubrie shopped for all by herself at her school Santa shop. Sadie loved it.

This was a pink dolphin that Chloe shopped for at her school Santa shop.  Sadie thought it was absolutely hysterical. She just kept laughing and smiling at it.

She was so happy that morning.

 

She was a sick a little girl

   This past week and a half was not a fun week for Miss Sadie or for any of us for that matter.  We were all sick in one form or another.  All of us (excluding Sadie) had some sort of a GI bug.  It was the worst.  Thank goodness it is over! The bug itself was short lived, but when it hit, it hit HARD!  Miss Sadie, however,  the poor thing got the respiratory stuff.
   It started last Tuesday when she couldn't stay awake.  She got up at 9:30 in the morning and before she left for school at noon, she took 2 naps and then slept on the bus on the way to school, complained when she got to school when the teachers tried to do anything with her, they left her alone for a few minutes so she could calm down and she fell asleep. She then slept all the way home on the bus. Between 4 o clock and bedtime she took 2 more naps and at 8 that night went to bed. Something was obviously very wrong.  That night started this horrible, painful cough.  That was the beginning of Sadie's terrible 2 weeks of illness.  Over the course of the next few days Sadie could not stay awake.  Thank goodness for her g tube so that I could continue to feed her.  Otherwise we would have had to go into the ER for hydration cause that little girl was not waking up for anything. The cough continued and we would get random fevers, some high 103.6, some low 100.2.  Tylenol would bring them down and sometimes they came back right away and other days they wouldn't come back at all.  I did discover that her body temp is weird and unpredictable.  I know, I knew this a long time ago, but not to this extent.  To really tell when she has a fever is a pure guessing game.  While Sadie was pretty lethargic and not doing anything besides laying there, here hands and feet were freezing and her core was burning up and her cheeks were bright red.  I would check her temp, and it was normal.  I would give her Tylenol anyways and she would perk up and her feet and hands would warm up and her cheeks and core would resume a normal temp and color.  Other times I thought, maybe she has a low grade temp, but not really sure, yep sure enough, another super high temp.  There truly is no true signs with this little girl.  You just have to trust your gut on if she is feverish. So complicated.  Try explaining these signs to a Dr.  They look at me like a I have 2 heads.  I know what they are thinking "she's crazy".  I agree though, sometimes I think I'm crazy too.
   Anyways, over the next few days the fever, lethargy, and cough continued.  Her eyes were swollen and watery.  She looked miserable.  I took her to the Dr (unfortunately it was a Dr that doesn't know her, it was the ill child walk-in clinic on Saturday morning) and since all the vitals and everything checked out ok he said he thinks it's just a cold and sent us home.  I tried to believe him for a couple of days, but my heart told me it was more then just a cold.  We went back to the Dr's office on Monday (again it was not her normal Dr as she was booked solid that day).  I explained everything that was going on and this Dr was a little bit more worried then the last.  She sent us to the ER.
   The ER worked her up for everything. Chest xray, blood work, swabbed her nose and throat, checked her urine.  They were going to find out what was wrong. After 4 hrs in the ER they found that she only had a urinary tract infection and probably just a cold.  Her lungs were clear which surprised me (I thought for sure she had pneumonia).  They sent us home on an antibiotic and said they would call if anything else showed up.  The next day Sadie seemed to have perked up with the antibiotic and showed no signs of a fever.  However, the ER called.  Sadie's test came back showing that she has the flu and she had a positive blood culture.  REALLY?! This is not what we need right before Christmas.  They asked us to come back to the ER to recheck her and redraw the blood culture.  Tuesday night we went back to the ER for another 5 hours.  Sadie actually seemed to be improving with that antibiotic and again all her vitals checked out good.  They redrew the blood culture and then gave us the choice of being admitted to wait for the blood culture to come back or go home and wait for the results.  We went home.  She was stable and improving, I felt comfortable and safe with her being home.  Plus, with Christmas coming there was no time for being admitted.  Too much to do with my other girls with school and stuff and too much shopping left to do.
   We came home and she continued to improve with her lethargy and fever.  She did develop a cold, after recovering from the flu and now has snot pouring out of her nose, however, she's still better then she was all last week.  Last night (Friday) Sadie's regular pediatrician called to check up on Sadie and to tell me that her second set of blood cultures came back negative.  Woohoo!! That means she does not have a blood infection and is not septic. Which also means we do not need to be admitted to the hospital for IV antibiotics.  That was the best news I heard in the past 2 weeks.

 Sadie would be looking at me and smiling at me and as soon as the Dr's or nurses came in....

She would cover her face and bury it in the bed as if to say "If I can't see or hear you, you must not be able to see me either".  Lol