August 29, 2014

Aubrie's ears

  Aubrie is my very sensitive child.  If she thinks she hurt your feelings... tears.  If someone hurts her feelings... tears.  An animal gets hurt... tears.  She's scared... tears.  She's happy... tears.  She gets a scratched... tears.  For every emotion and situation... she cries.  She has a very tender heart.  She wants to be a nurse when she grows up so she can help Sadie to not have to go to the Dr's so often. She is also a very funny little girl.  Funny things just come to her so naturally and the way she delivers things is perfect. She is a stand up comedian and she has no idea. Well Aubrie got her ears pierced a couple weeks ago.  I thought for sure we would have screams heard through out the mall.  I thought for sure we would have to make sure to have two people do her ears at the same time or she would back out because of the pain after the first ear was done.  But I was pleasantly surprised and wrong.  This girl is so good at proving me wrong.  I don't think I give her enough credit.  I still see her as this fragile little girl.  But she is growing into this sweet, confident, strong, beautiful, funny little girl.

Before the piercing.  So quiet and serious.
During the piercing.  And yes they had to do them seperately because they didn't have enough workers to have two girls pierce her at the same time.
She held tight onto daddies hand!
The shocked moment of "Did I really just do that?"
And then the extremely proud moment when she realized that she did do it.

August 25, 2014

Finally gone (we hope)

Last week Sadie went to the ENT again. He looked in her ears and said the tubes were still in place and no granulation tissue and they actually looked really good.  He said sometimes the ear is just irritated because there is a foreign object in it and it bleeds or just drains.  So his guess is that is what has been going on with her ear.  He suctioned it out, gave us some new drops.  And so far we have had no issues!  We just finished this round of ear drops.  So here is to hoping that there is no more drainage!

August 21, 2014


...Ankle Foot Orthotics

  That is what Sadie was fitted for today.  Ohhh, how I've been dreading these braces.  I don't know why.  Well, I do know why.  But now I don't know if that's really the reason why.  Have I confused you yet?  Cause I have definitely confused myself.
  AFO's are braces that are used to give extra ankle support.  This doesn't sound like it's bad thing, right?  Right.  Except it goes against everything that I have been working with Sadie on.
  Sadie has been in ABM (Anat Baniel Method) therapy since she was 9 mo old.  It is all about movement and freedom and recognizing what muscles do what movements and making nerve connections to the brain that may not be there for one reason or another.  It's about teaching the mind about the body, and the body about the mind.  Sadie has done wonderful with this therapy.  She rolls and twists and is extremely flexible, holds her head up when on her tummy.  She used to be stiff as a board, literally, you pick her up and she didn't bend. Recently she's working on pulling her knees up under her when on her belly (like in the crawling position) and working on sitting up.  I love ABM!  The only thing I don't like is that it is very slow progression.  It takes a long time to get nerve pathways connected.  But it DOES work.
  So when Sadie's physical therapist started talking about bracing her ankles (probably last year in October) and putting her in a stander, I said "No, we aren't bracing her or putting her in a stander".  To my understanding, when you brace a body part or put them in a restrictive environment where there is no movement, it causes no new nerve pathways to form and causing body parts to become stiff.  I don't want this.  We have worked hard to loosen Sadie's body up and create all these nerve pathways, why would I want to take the chance of losing what we have done?  Sadie therapist never pushed or argued.  She brought it up gently and nonchalantly and did A LOT of educating, but I stood my ground and kept saying "no".  That is until... now.
  What made me change my mind?  I honestly don't really know.  I listened to everything the PT had to say, I did a lot of my own research, I talked to other parents about AFO's, I spoke to Sadie's special needs Dr, I prayed to make the right decision for my daughter.  Then one day I was talking to one of my patients (for those that don't know I am an ortho/trauma nurse) about why it was important to wear this AFO brace until their ankle was strong and how it was there to protect and strengthen the ankle and BAM! like a slap in the face it hit me.  I'm a hypocrite.  I tell these people all the time about the importance of the braces, however, I won't allow my daughter to wear them.  Ugh!  What the hey?  What is my problem?  Why am I so willing to help my patients, but not my daughter?
  I went home and thought about my epiphany moment at work.  Why won't I get them for my daughter? I came to the conclusion that it's my own insecurities, I guess. Wearing a brace is an outward sign that something is wrong and that she has special needs.  My secret is I still try to tell myself that she's fine, this all is still a bad dream.  I wonder if I will ever get over that? Probably not, I won't lie.
  So that is how I came to the agreement to get braces for Sadie's ankles.  Don't get me wrong, I still hate the idea of immobilizing her ankles (or her entire body in a stander, but that is for a different post).  I still think that it is extremely important to give her as much freedom and movement and direct contact with objects (such as a foot directly on the floor) as possible.  After I voiced my concerns about constricting her movement and disrupting her nerve pathways that are being formed, I also told them that I am agreeing to get the AFO's. We came to the agreement that she will have them on ONLY when she is in the stander or they are doing weight bearing activities with her.
  Of course her PT was thrilled, I'm trying to be thrilled.  One of the hardest parts of raising any child, but I think especially a special needs child is trying to make the right decisions for them. A typical child there is a "normal" progression and society has pretty much set up what should be done.  You don't have to question your decisions, at least not to great length.  Special needs kids there is no normal. Society is scared of special needs so there is no "plan or natural progression" set up for them.  It's all up to the parents.  Parents of special needs kids already have a ton of guilt, so why not add the pressure to make more decisions for the unknown. I'm hoping and praying that the short time she has them on doesn't regress her fantastic ankle movement that she has gained over the last 3 yrs.  And that these AFO's will only be a positive thing for her and she will start to bear weight through those cute, short little legs.

Miss Sadie is getting fitted for her AFO's.  They put on a "cast" to form a mold for her foot.  I seriously thought she was going to scream and fight the entire experience, but as always Sadie proves me wrong.  She sat there very quietly and patiently, not moving a muscle.  With her arms behind her head, just chillin and watching his every move.  It was really cute to watch. 

August 14, 2014

Really? Again?

A week before Sadie's heart surgery, her left ear started to have some drainage. We treated her infection with antibiotic drops, made sure it was gone prior to heart surgery and called it good. So we thought...

July 23 (a couple weeks after surgery) Sadie's left ear started to drain again. It was clear "ish", but a large amount of it so they decided to treat it assuming it was the start of an ear infection.  Usually, we just do the antibiotic ear drops and call it good.  But since she just had the heart surgery the heart surgeon wanted something systemic to make sure that no infection went to her heart, so we treated with amoxicillin.  However, the drainage never stopped.  So we added the antibiotic drops on top of the oral antibiotic.  Finished both of them after 10 days.  A couple of days later the drainage started again.  OK, now what?  The Dr took a culture of the fluid on a Friday and said start the abx drops again.  A couple days later (Monday) the culture came back growing nothing so they said stop the drops and see what happens.  Well guess what happened on Wednesday?

Yep, it started to bleed again.  Ugh!  So I called the Dr again. Expecting him to say that she needed to have another surgery to clean it out (just like she had when she was 18 mo).  To my surprise though he said, lets treat again with different abx drops and we will see what it looks like on Monday.  Fingers crossed these abx drop work.  They seem to be so far, the bleeding has stopped but there is still drainage.  I have a feeling that he is going to pull that tube out.  Which I don't want cause it is working and it will just have to be replaced eventually.

Oh these little ears!  Why can't they just cooperate?

August 05, 2014

The new seat

  Ohhhh how I took for granted Chloe's and Aubrie's muscles and how they met milestones with absolutely no problems.  You just don't realize how much you take muscles for granted until they are unable to be used or they just don't work correctly.
  Because of Sadie's weak core and neck muscles she can not participate in many activities.  Activities that you just don't think about until you are unable to do them.  Activities that not only effect her, but myself, like going grocery shopping.  I couldn't do it anymore when I had Sadie with me, because she couldn't sit in a cart and I am way to uncoordinated to be able to push a cart and pull a stroller.  The girls would try to help, but would get bored and lose interest in pushing the cart or stroller right in the middle of the trip and then we would be arguing in the store and it really wasn't their fault or really their responsibility.
  BUT NOW.... I CAN!!  Some brilliant person came up with this seat.  It's called a GOTO seat by Firefly.  It converts almost any regular seat into a head rest seat with a 5 point harness.  It has been a total game changer and Sadie LOVES it.  We can now....
sit out on the deck and look at peoples faces instead of their legs and feet under the table.

Sit at the table at burger king with my sisters and not have to look at the gum stuck to the bottom of the table (which is the view from the stroller).

Go shopping!

Sit at the dinner table with the family.

swing on the swings at the park.
   We are so thankful to have found this seat.  We have used it on numerous occasions and I'm sure we will use it many, many more times in the future.  I recommend this seat to anyone!