Goal Met

  For this school year one of Sadie's IEP goals was to be able to tolerate being upright for long periods of times and to sit independently up to 45 minutes.  Check! Goal accomplished.  :)  This little girl is awesome at sitting.  Well sitting in a chair, on a bench, or on her new bed!  Unassisted with no back behind her.

Sitting so perfect and proud!

  We are still working on sitting on the floor.  She's done it a few times, but not enough to say that she has the skill.  Weird, she can't figure that out. You would think that it would be easier because of having a wider base with her legs in a ring shape.  But that's ok, we will continue to work on that skill and use the skill of "chair sitting" for now.

   

Why Dreaming Big Is Mandatory

Guest Post: by Stacy Warden

When you dream big about your child’s future, others around you have a tendency to think you can’t grasp the hard truth in front of you.
Dreaming big doesn’t mean we’re ignoring the challenges that our child faces or the probable outcomes based on medical predictions.
When we dream big we encourage others to dream big with us.

And dreaming comes in all different forms and sizes.

While we all of course are dreaming the ultimate dream – complete recovery and healing for our child with special needs – we have so many other dreams that have the potential to be life altering.
We can dream about the invention of a new product that would make it easier for us to travel, for our child to participate with his or her peers, or assist them tasks needed for independent living.
We can dream about new technology that will allow us to hear our child’s voice, digitally enhanced by using their own vocal sounds to create what their voice would actually sound like if they were verbal.
We can dream about a world that never stares at a child with special needs.
We can dream about government resources and insurance benefits not being so hard to access.

We can dream about lots of things and it’s okay to dream big - because dreams can and do happen.

When we dream big we plant the seed of greatness to grow.
We are challenging the universe to put our intentions into play.
Dreamers are never low on hope because they know that anything remains possible.
People might want to try to convince you that dreaming sets us all up for disappointment on the special needs journey, but I tend to think it’s just the opposite.

Dreaming presents us with recognizing there are endless possibilities, sometimes it even encourages us to chase them.

Parents designing equipment that they know that could benefit those with disabilities; parents knocking on the footsteps of Congress dreaming of changes that will allow those with disabilities to be able to change in public restrooms with dignity, dreams that we can make this world a better place for our child so they will be safe and supported once we are long gone and or no longer able to care for them.
Dreaming is more than okay.
And we need to hold onto all these dreams.
And then we need to find active ways to try to make these dreams a reality.
And maybe secondary dreams could happen in the process; like watching our child sit for the first time, speak “momma” and then form sentences, and then talk non-stop, or be able to transition to eating solid foods… dreams are endless.
Don’t give up on them.
It’s healthy to dream.  

A new bed!

  A while back I wrote a post about looking for a safety bed for Sadie.  As I was looking, I also started to deal with insurance, looking for grants, charities that donate beds, and I reached out to facebook looking for a carpenter.  I was going no where fast.  Insurance is ridiculous!  And I know I've mentioned it in this blog before, but I HATE dealing with them!  They do not care about special needs what-so-ever.  They barely cover equipment or food or prescriptions or appointments.  You have to fight and fight and fight, while they deny, deny, deny and then FINALLY they will "cover the cost", and it's a smidgen of the cost.  Our society has failed our special needs community, but that's for my soapbox story some other time.
  Just as I was feeling the frustrations of going no where, my prayer was answered.  My mother in law ran into her cousin in a store who she doesn't speak to often.  As they got to talking she discovered that he had made a safety bed for his grand daughter, who has cerebral palsy, a few years back.  Bless this mans heart, he said that he would be happy to make Sadie a bed.  He is a retired carpenter and was looking for a winter project.  Could this really be happening?!
  He came to my house and we chatted about all of Sadie's needs and her future and he shared his stories and his love of his grand daughter.  He then showed me pics of the bed that he made for her, It was exactly like the beds I had picked out. He then took measurements of me, Sadie's room and the mattress that she would be using, so that it would be totally customized to our needs.  As he was leaving he stated that it should be done in a few weeks. WHAT?!  A few weeks?  I was expecting to get her bed for a her 5th birthday, that's why I started after her 4th birthday, in HOPES of getting it by her 5th.  I figured this whole process was going take at least a year.  He also said he was only going to charge me for the materials. $400-$800 versus $7000-$10,000. WHAT?! Seriously? God bless this man!  Sometimes in the special needs journey, well I guess any journey, you can get so frustrated that you stop having faith in humanity.  Then something happens and a person appears in your life, and faith is restored.  It's like a breathe of fresh air when you don't have to fight for something.

  A couple weeks ago he delivered and set it up.  It is absolutely beautiful and perfect (and huge and sturdy).  And Sadie LOVES it.  It is a twin size bed.  She can turn circles in this bed without hitting the sides with her head, legs, or arms, like she has been the last 6-9 months or so in her crib.  She can even lay the width of it all stretched out, without hitting the sides.  We love it and she loves it. What else could we ask for?  Thank you Joe, you truly are an Angel to Sadie and our family.

 

 

 

Two Appointments

  At some point in Sadie's month and half of being sick we managed to venture out on her "good" days to see a couple of Dr's, the neurologist and pulmonologist.  Appointments I had been anxiously waiting for since her results from her last sleep study.
  Neurology appointment:  With such a huge change in Sadie's breathing while sleeping, there was a thought that maybe this was regression or deterioration of part of her brain.  That was my main question for the Doc.  After an examination (one that Sadie slept a majority of) and a million questions. It was determined that it was not deterioration.  She is progressing too much in too many other areas for that to even be a question.  Although he really couldn't answer my question as to why her sleep apnea has gotten significantly worse.  We both hymned and hawed over doing another MRI of her brain, but we decided against it.  I'd rather save more radiation to her little body for when something major or a significant event happens.  Over all it was an uneventful appointment but reassuring that he didn't think it had to do with changes to her brain.
  Pulmonology appointment:  This appointment I dreaded, but still really wanted to know answers about her sleep apnea.  I also was "happy" that Sadie was still sick cause I wanted to know her opinion on her lungs/breathing/overall respiratory status. The Dr examined her and said that her lungs were not really that "junky" sounding and that it was more of her upper airway. She just suggested the deep suctioning which is what i had been doing. So that was reassuring.  Then it was on to the main subject.  I think I asked her a bazillion questions, some questions that I don't think she was prepared for and kind of threw her a little bit as she stumbled for words/answers (but that's ok, it keeps her on her toes).  The two topics the we discussed: 1. Was the change as significant as the respiratory therapist made it sound when she gave me the results and 2. is there anything we can do about it?
  Was it as significant of a change as the therapist made it sound?  The answer, unfortunately, was yes.  The Dr explained that all of Sadie's sleep studies have progressively been getting worse, but this one was a huge jump.  A ratio (and no I don't know what ratio it is) doubled itself in 9 months and with that big of a jump it means that the oxygen that she currently wears at night is no longer triggering her brain to breath. Not good.  I knew what was going to come out of the Dr's mouth next.  Before she could say anything I asked her "are we at the crucial point that something needs to change or do we still have room to play with because I am dreading what you are going to suggest".  She paused (for quite a bit) looked over all of Sadie's test results from the last 4 years, "looked back at me and said "Yes, I feel like we are at a crucial point that we need to change something.  That was a pretty significant jump for 9 months".
  The plan:  Sadie is going to have another sleep study, but this time it is for her to trial a c-pap and/or a bi-pap machine for her to wear at night.  These machines do different things, but essentially the point is to "breathe" air into her when she doesn't take a breath on her own.  *sigh* I am truly dreading this machine cause i know that Sadie is not going to be happy with this mask over her nose, nor will she like the fact that she will have a much harder time flipping and rolling around in her bed.  But if we are at the crucial point, then this is what we are going to do.  We are just going to have to make it work.  The Dr did say that sometimes these machines don't help either, or the sleep is worse because of the fighting of the mask and at that point the mask is doing more harm then good.  But only trial and error will tell us what direction Sadie will go in.  So now we wait for the next sleep study.

The last month or so

  Oh my goodness!  It has been a busy couple of months.  As you know Sadie was sick mid January.  High temp, then a wet cough.  Then she seemed to get better for a few days, and then went back down hill again.  At the end of week 4 of her still being sick I called her Dr and they started her on an antibiotic (did I not call that one? She always ends up on an antibiotic). We were guessing at that point she probably had a sinus infection. Who knows if that's what it was or not, but it worked.  A 10 day course of amoxacillin and voila! she's back to healthy again.  Or so we thought.  We had a one healthy week and then back to a high temp and sleepy again.  Really, again?

Yep!  Luckily, it only lasted a week this time and then her body kicked back into healthy mode.   Now we are just finishing up week 2 of being healthy and there are no signs of illness.  Fingers crossed it stays that way, but I figure it's the end of winter and no one in the house is sick right now, we may be in the clear for a while.  One can only hope, right?

  She also developed a new rash.  I thought is was from the amoxacillin at first cause thats when it appeared.  Now I'm rethinking the whole thing.  It's still there.  It doesn't seem to bother her. But it's spreading.  I guess we will be going to the Dr for that at some point.  I think it is exzema.

 

 

 

  So besides Sadie being sick for about 6-7 weeks, I also started a new job.  I've been searching for a "work from home" job as an RN for the past 4 years.  Never actually thought I would find one, but was hopeful.  Well, I found one.  My prayers were answered.  I started the training a few weeks ago (you know, right in the middle of Sadie getting sick again, perfect timing. NOT!).  So in a few months, when I'm deemed competent, I will be able to work from home.  I'm praying this all goes as well as I'm planning and playing it out to be in my mind. Again, only time will tell.

  Aubrie also started basketball.  She's not on a team, just taking classes to learn about the game.  Does that little girl love it!  She is definitely my little sports girl.

 

 

In the last week...

Anybody notice a theme here?

Friday

Saturday

Sunday

Monday

Tuesday

Wednesday

Thursday

Yep, you guessed correctly, Miss Sadie is sick.

  

  Last Thursday Sadie came home from school and was not acting like herself.  No symptoms of being ill, but she just seemed sad.  No laughing, smiling, giggling, playing, just a sad stare around the room.  I knew something wasn't right, but I was just hoping that she was just really tired because she had only slept about 6 hrs total, off and on, the night before (her usual is about 10 or so, straight). I put her to bed early and she slept all night and all morning.  Finally I had to wake her up at 11:15 to go to school. Unusual, but I figured she was just catching up on her sleep. She came home from school and the bus driver said she had slept on the bus, both ways.  Strange, but it's happened before. I figured her teacher just worked her extra hard. She seemed a little out of it, like she was groggy, but she was making eye contact and rolling around happily.  Couple hours later, she was out like a light while I was making dinner.  My gut then said something was up with her.  After dinner I picked her up to put her to bed and she was burning up... fever 104.2.  Crap!

  That is how the whole thing began.  We battled high temps (101-104) with no other symptoms. Pulse oxygen was fine, heart rate was fine, color was good, lungs clear. I had talk to the Dr who thought it was fine to keep monitoring her at home. When she still had no other symptoms, on Tuesday, I finally decided to take her to the Dr.  I hate taking her to the Dr. After I left the office, I remembered why I hate taking her to the Dr.  I always get the same thing. "It's a virus".  They run no tests or x rays, they just look at her, do their usual listen and look and then say "it's a virus, call if she doesn't get better in a few more days".  It's not exactly that cut and dry, but that's their whole point. That's the same line that I have gotten the last 3 or 4 times that she has been in there sick.  Then 2-3 days later we go back or call saying that she is not better, they put her on an antibiotic and she gets better.  It's so frustrating! Don't get me wrong, I love her peds Dr office, and I generally love that they don't run a bazillion tests, but sometimes I don't think they realize that Sadie is different and presents differently with her symptoms then most kids. I hope I'm wrong this time, and they are right.  Fingers crossed!

  Today was the first day that we haven't had a fever.  YAY!!!  However, now she has a wet, sick sounding coughing that is weak and random.  Who knows if this is the same virus that we started with last week or if this is just a new virus that attacked her when her immune system was vulnerable.  Not sure. But I really, really hate seeing her sick.  My anxiety level goes threw the roof.

Our winter break fun

Christmas break was fun and busy.  It was a little different cause we haven't had much snow so it was kind of hard to get into the season, but we did it. And made the most of our break.

The girls made a gingerbread house.  They had so much fun. 

Sadie stood and watched them the whole time, which was about and hour or so.  Yay, Sadie for tolerating standing for that long.

Chloe is in the choir so she had a couple of Christmas choir concerts

She also is in dance, so we had a Christmas benefit dance recital.

Christmas Eve Mass

Sadie looks so tiny in this pic sitting between the 2 girls.

Chloe sang in the choir during mass, so Sadie and Aubrie hung out together.

Just some random pics

She kept trying to turn around to look at the lights

She loved looking at the packages. Especially this one

We finally turned her around so she could look at the lights on the tree.

Sadie sat in this chair for so long, hours in fact.  My family that haven't seen her lately were shocked at her progress.  With only one tumble to the side, head first and then one scootch of her butt forward and a gentle slide forward onto the floor.  She sits like a pro in chairs, but we are still working hard on the floor sitting.  But I'm confident she will sit like a pro on the floor at some point in her life.

She got a new hat and mittens from her great grandma and gave us the sweetest smile as soon as we put it on her head.

She was thrilled with this headband. No, not really.

News Years Eve

Cheers