February 28, 2015

Weird episodes

Sadie has had 3 big weird episodes and many small episodes since the beginning of January.

  The first one (Jan 5th): I didn't even really realize it was weird until the 2nd and 3rd one occurred.  Probably to the average person, it is really not that weird.  It was that she took a 7 hr nap.  She slept from 2 in the afternoon until 9 that night and then went back to sleep again around 11.  Slept all night.  I just assumed she was super sleepy.  During that 7 hr "nap" I changed her diaper and clothes, moved her from wheelchair to crib, to changing table, and then back to crib. She wanted nothing to do with waking up. The next morning she was wide awake with no concerns.

  Over the next couple of weeks she had many small episodes of extreme sleepiness. She would just fall asleep in a blink of an eye, almost like a narcoleptic. She would take many, many small to medium naps and during the weirdest times. Like when I'm changing her diaper, or brushing her hair, or getting her dressed. I would put her in her wheelchair to go to school and she would fall asleep. She would come home from school and get off the bus asleep.  I would read what the teacher wrote in her communication book, she slept during class.  All she wanted to do was sleep.  Normally, she is a great sleeper... at night.  She will sleep 12-14 hrs every night. And sometimes will take a short nap during the day.  These sleeping episodes are odd for her.

  The second episode (Feb 16th):  Sadie didn't wake up at her normal time.  I heard her at her normal time, but every time I went to get her up, she would be already back to sleep.  I had worked the night before and decided to go to bed and let my mom get her up when she finally woke up for good.  A couple of hours later, my mom wakes me and tells me that Sadie isn't acting like herself. She told me that Sadie seemed super sleepy, and over all nothing seemed right about her.  I thought "great, she is getting sick". As the rest of the afternoon went on Sadie was acting more and more odd. She was awake and looking at me, but she wasn't seeing me.  She wouldn't move her body. She wouldn't make her normal happy (or unhappy) noises.  My two other girls came home from school, looked at Sadie and freaked out cause she was limp and pale. I reassured them that Sadie was ok and I sent them to their friends house down the street. I called my husband at work and told him something was wrong with Sadie and I needed his thoughts (being an RN can be my enemy, it's nice to have a non medical mind looking at her).  He came home and messed around with her.  We did everything possible to annoy her.  We picked her up (she was completely limp), played with her hands, brushed her hair, tickled her, and then finally started to sternal rub her.  She was very pale. We got very little reaction.  We hooked her up to all her vital machines.  Everything was in the normal range.  No signs of distress at all.  Finally, we both looked at each other and said "take her to the ER".  So I quickly packed a bag for both of us, put on her coat, picked her up and started out the door. That's when she started to make her unhappy noises.  I laid her down and my husband started to mess with her to annoy her on purpose.  This time it worked.  She laid awake complaining to him for awhile.  We decided to hold off on the ER.  She was slowly snapping out of it.  An hour later she feel asleep again.  She slept for a little while and then I decided to wake her up.  This time she woke up and was happy, still not moving much or verbalizing a ton, but she was looking at us and seeing us.  Over the next couple of hours she started to move and "talk", finally she started to play with her feet and we knew she was back to her old self.  No idea what that episode was all about.  She went to bed that night, slept all night and woke up the next day as if nothing happened the day before.

  The third episode (Feb 27th):  This one I did not witness.  I had told Sadie's teacher about the second episode just so she could watch out for them and to ask if she had ever seen anything unusual.  She said she had never witnessed anything, but of course would let me know if she did.  Well, one afternoon I get a phone call from her teacher saying that Sadie was in the middle of an "episode".  She explained that Sadie was asleep when she got to school and they let her sleep.  Finally, they decided that they would start to wake her up.  They picked her up and she was limp they proceeded thinking that she was still tired, they changed her diaper and then started to do an art project with her in which they paint her hands.  She made no complaints, no pulling away, no "telling them off", no nothing.  That's when they realized something was wrong with her. They laid her back down on the mat she stared at them as if looking right threw them and then she closed her eyes and fell right back to sleep.  They called me, told me about the whole "episode".  I decided to go pick her up from school and take her to the ER.  I made arrangements for my other girls for afterschool and off I went. By the time I got to her school she was starting to snap out of it. I was happy, but at the same time, I really want medical people to see her in this state of almost complete paralysis.

   What is going on with her? What am I go to do about these episodes? I guess it's time to start seeing specialists again!

February 25, 2015

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. 



February 20, 2015


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.

February 14, 2015

The Valentine Letter

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,