Another wheelchair and stander

   The original wheelchair that we picked out for Sadie back in February, as you know from a previous post, was terrible for Sadie. We had to start the whole process over again.  The wheelchair that Sadie has borrowed since the beginning of the school year we (PT, teacher, myself) decided seemed to be the perfect chair for her.  We had our appointment today, she is fitted, all accessories are picked out and most importantly  ;) the color was picked.  Now the waiting game begins. It has to be approved by 2 insurances, then I have to approve the amount of money that insurance isn't going to cover, then it has to be ordered, then it has to come in and be customized, and then we get it.  It's all such a waiting game.  But that is the name of the game in the special needs world. Waiting, waiting, waiting.  At least this time they said we should get it in a few months. I'm not holding my breath though.
   We also are going to try ordering Sadie her very own stander for at home.  Hopefully, the insurance company will approve this.  What is a stander you ask?  It's a contraption/gadget/tool (?) that helps her to stand and put weight on her legs, something that she doesn't know how to do.  They have used one at school a few times and she seems to enjoy it.  Hopefully, insurance will see the importance for it and approve it.  Again we will play the waiting game.

Chloes 7th birthday

   It was a Chuck E Cheese 7th Birthday party this year for Miss Chloe.  My little fasionista loved every minute of it.  The irony of this party is that 20 yrs ago (almost to the day) I started my first job and it was at this Chuck E Cheese.  It is also where I met my husband as it was his first job also.  Who would have thought that in 20 yrs we would be celebrating our daughters 7th birthday there.  CRAZY!!

 

 

All of her friends and family.

 

Jamming on the guitar with Chuck E.

Happy Birthday and blowing out her candles.

 

Was excited for the ticket blaster.

 

But when it started the air was so strong she couldn't see anything and her hair was going crazy.  She still got like 600 some tickets, but I think it was pure luck.

 

Party ended and I'm pretty sure all the little girls had fun.

Sadie enjoyed the lights and the show.

Aubrie had a blast.  Just look at that smile.

It also happened to be daddies birthday.  We couldn't have not had a birthday cake for him too.  The girls thought it was hysterical that daddy was having a "birthday party" at Check E's too.

 

 

She spoke her mind

   For a little girl who in non verbal, Sadie is very out spoken and she will tell you what is up and what she is thinking, what she likes and what she hates.  This is not a new revelation.  She has done this since day three of being alive when I tried to hold her and she wanted nothing to do with being held.  We have come to learn her likes and dislikes and try to avoid them if it is possible.
   Well 7 months ago we went for a wheelchair evaluation.  We picked out a fancy, shmancy  chair that had all the bells and whistles to it; shocks, tilts, completely comes apart, "light weight" (that's a joke, all wheelchair are heavy), child can face forward or backwards, different colors, hood, add different parts in the future if her needs changed, and lots of room to grow.  It gave her great posture and support.  The rehab people were going to have to adjust it and customize it just for her because of her tiny size and because of her arch that she gets when she gets mad, but they were confident that they could do it.
   Like I said, that was 7 months ago that we ordered this chair.  A lot can happen in 7 months.  Why did it take 7 months?  Insurance.  They don't like to pay for expensive items.  So they analyze it forever and debate everything.  Finally , they agreed to pay for most of it and I had to cover some of it.  Whatever!  I just wanted a good chair for my daughter since she will be in it for who knows how long.  But as I said, a lot can happen in 7 months.  In the mean time Sadie's neck has gotten stronger.  Sadie's back has gotten stronger.  She moves much more freely then she did.  She has more control over what she is doing.  Don't get me wrong, we still has a long ways to go with strength and control, but she just doesn't need as much support as she did 7 months ago.  This is a good thing.  However, that means that this chair may not be the right fit for her anymore.
  So the time finally comes for us to go and get "fitted" for her chair and bring it home.  Hallelujah!!  This is fantastic news.  However, the closer the appt got, the bigger the knot in my stomach became.  This wheelchair, from what I could remember, just wasn't going to work for Sadie anymore. It gave her too much support. Is that possible?  Sounds odd, but that's the only way I know to explain it.  It had a headrest on it that she no longer needed (plus we found that she HATED this kind of headrest.  It is on another chair that we have at home and we had to remove it because of her attitude when we put her in the chair). The wheelchair had lateral side supports for her body, yep, didn't need those anymore because of her control (plus we recently found out that she hated those too, as we would put her in a chair at school that had them.  Again we had to take them off the chair because of her attitude).  She had this terrible arch that I just couldn't imagine them being able to adjust this chair to stop. She didn't grow in length like they were hoping that she would.  I couldn't ignore this knot in my gut.  The day before our appt I started making phone calls, tying to figure out if it was too late to back out of getting this wheelchair.  I made a bazillion phone calls to the insurance company, supply company, rehab place, her physical therapist, etc.  Finally, the consensus was for us to go to this appt and if it really didn't work then I wouldn't sign the papers for it and I wouldn't be forced to keep a wheelchair that didn't work for my daughter.  This was good to hear, but the knot was still there.
   We went to the appt first thing this morning.  I decided that I wouldn't tell them that I was thinking of backing out of the chair.  I would listen and watch and see if everything could be adjusted to her and who knows, maybe I was remembering the chair wrong.  Maybe they could adjust everything appropriately to her.  We began the appt and they started showing me all the awesome things about this chair and after seeing all this stuff, I was hopeful again that this chair would work.  Then came the time to adjust and create the perfect seat for her.  (Hahaha, oh boy, *shaking my head*)
  They sat her down in the chair she started to scream.  They looked at what needed adjusted, took her out, and adjusted it.  The did this several times.  Every time she screamed.  There was nothing making her happy.  She arched and arched and screamed.  I'm pretty sure she was telling them exactly where they could go and to take the chair with them.  Lol.  Finally, they (there was 3 of them) just stopped, looked at the chair, looked at each other, and became pretty quiet.  You could tell they really didn't know what to do next.  I finally spoke up and said that I kind of had a feeling that this was going to happen and that I wasn't opposed to picking a different wheelchair and starting this whole, very long process over again.  I just needed her happy and comfortable.  After some more silence and him hawing around they agreed that they couldn't adjust this chair to be comfortable and safe for Sadie.
   I was so relieved that they agreed that this chair was not right for Sadie and they were not going to make me take this chair.  I was also proud of Sadie for speaking up and telling them that she hated this chair.  Sometimes All the time with a non verbal and cognitively delayed child there is A LOT of guessing; what hurts, do they want this toy, are they hungry, do they want to move, are they uncomfortable, too hot or cold, etc.  You know, it's like having a newborn infant, everything is a guessing game.  So for the fact that Sadie "spoke" up and voiced her opinion was awesome.  It also confirmed to me that I really do know my daughter.  I knew in my heart that she was going to hate this chair, and I was right.  It sucks that we have to start this wheelchair process over again, but it's totally worth it.  Plus, since we have been borrowing a wheelchair from her school that she loves, we already know what kind of chair we are going to purchase and we know she will love it.  No guessing game this time.  So on Oct 15th we have yet another wheelchair eval to pick out another chair for her (and we are going to eval her a stander for home also).  Fingers crossed everything will work this time.

Another new neurologist

  Yes, I got Sadie a new neurologist.  This time though, it's not because I hated the Dr.  In fact, I really liked her, however, she was almost 2 hrs away.  The reason I sought her out in the first place was because I was not a big fan of Sadie's current neurologist or the office that he worked in. And there where no other options in this town and at that time, we thought Sadie had a mitochondrial disease and the Dr I found had experience with mito disorders.  Well... fast forward 8 months.
  After genetic testing it was found that Sadie does not have a mito dx.  We no longer need the expertise of this Dr.  Also, we recently had a pediatric neurologist open his own clinic right here in town.  So I thought I would give him a shot. I'm so glad I did, it's such a small world.  Wait til you hear this.
  I did my research on this Dr prior to switching to him.  It ends up that he did his specializing in peds neurology in Seattle with the Dr that is running the research study that Sadie is a part of.  He is actually familiar with pontine tegmental cap dysplasia.  I didn't have to explain it to him. He didn't have to google it like all the other Dr's.  Do you know what a relief that is? Someone who actually knows about my childs brain.  Crazy!!
  So that is why I switched Dr's again.  He's closer to us and he knows about Sadie's brain abnormality without google, Wikipedia, or WebMD.  Luckily, we don't really need to see the neurologist very often cause Sadie really doesn't have on going problem with her brain.  But at least he will be familiar with her just in case something does happen with her brain like seizures or something.  And he won't think that she is currently having a stroke like our first idiotic neurologist did at her 1 year appt.  (I don't think I ever told you guys that story.  Obviously, Sadie was born with right facial palsy. He saw her a couple of times that first year, after that he kept having us see his NP.  When we saw him for her 1 yr check up, which was actually closer to 18 mo, he freaked thinking that she in the middle of having a stroke.  It was very obvious that he never really paid attention to my daughter or he would have known that she was born like that, DUH!  I hated him.)
  We had our first appt with the new Dr a few weeks ago. I liked him.  He really didn't tell me anything I didn't already know, but that's ok.  We plan on following up with him in 6-8 mo just so he can become a little bit more familiar with her and then we probably will just follow yearly just to stay on his radar.  I think I'll be happy with him.  Fingers crossed, no more switching.

Bearing weight

   When a baby is born and you hold them under their arms, their natural instinct is to keep their legs curled up underneath them. As they grow, those legs start to stretch out.  As a parent you start to tap their feet on the floor, putting them in jumpers and walkers, so they get the idea that that is where their feet belong.  Eventually, they learn to bear weight on there own, stand and then of course, walk.  At least that is the natural course for your typical developing child.
   Typical is not anywhere near Sadie's vocabulary as you all know.  Up until the age of 2 1/2 yrs, Sadie still pulled those little legs up underneath her.  However, in the last 6 months or so she finally is keeping her legs down when you hold her up.  When you touch her feet to the floor she still will pull them up, but will put them back down and repeat that action over and over and over.  However, she is still not bearing weight.
   With her ABM therapy we have been simulating weight bearing for a long time.  How? By doing joint compressions between ankle and shins and then between shin and femurs and then between femur and hips.  We do them all separately and then we do them all together.  I also hold a hard surface against the bottom of her foot as she moves it around so she can feel how it feels to have a hard surface against her entire foot at the same time.  That is more difficult to do then the compressions so it doesn't get done as often, but I try.
   Her PT that had been coming to our house (through early intervention) had really, REALLY wanted me to put her in a stander (which is the typical equipment that they use for special kiddos).  However, I really, REALLY didn't want to.  Why?  Because I felt that her head wasn't ready for it yet.  And as much as the PT wanted it, she also excepted my wishes.  But let me tell you, she was thrilled when I finally agreed that I thought Sadie was finally ready.  Sadie will still drop her head down to the side, but it's more controlled and she has complete ease with picking it back up.  We (my husband and I) don't think that she is dropping it because of being weak, we think it is because of her eyes/vision.  And that subject is for an entirely different post at another time.
  So we ordered the AFO's for more support for her ankles and as you know we picked them up a week ago or so.  Now little Miss Sadie is standing up in a stander.  The first stander her teacher tried didn't go so hot and Sadie hated every minute of it and she told her exactly that.  The next day I gave her teacher some little hints about Sadie and she found her a different stander that would fit her little body and that suited her needs a little better.  What do you know?  She liked it!  No complaints that day and she stood for 30 minutes that first day.  I was so proud of her.  She got her very first star at school.  Luckily, her teacher already knows me well and took pics for me and emailed them to me.  Love it!!

I can just hear what she is thinking in this picture with her hand up to her head, "I yi yi, what are these people doing to me?"  Lol

 

  Even though it's a different way of meeting a milestone, she still met it (just with a little more assistance then most).  That's two milestones (going to school and standing) met in one month.  She's on a roll! ;) 

 

It happened again!

 

For the second time in Sadie's life she fell asleep in my arms.  This is HUGE for her and me.  1. She was relaxed enough being held to actually want to fall asleep.  2. All the therapy we are doing with her is working.  It takes forever, but it is so worth it when you get these moments.  You just don't know how this melts my heart! 

We got them

Here they are.  Sadie's first pair of AFO's.  And I have to say they are so tiny and cute.

   You can't really tell from the pic, but they are neon green and purple with polka dots on the straps.  Bright and colorful!  Just like Miss Sadie.  She's sleeping right now, otherwise I would take a pic of her in them and show you.  I wasn't to sure how she would react with them on her feet.  I kind of thought she would be irritated because she can't grab her toes and hold her feet.  But as usual, Sadie proves me wrong.  She could care less that they are on her feet.  She just goes about her business like always.  I guess in away they are probably just like her shoes or boots and that's probably why she doesn't care.  Doesn't matter, she doesn't mind them and that makes me happy.

   My goal for this weekend is to find a pair of shoes that they will fit in.  They don't have treads on the bottoms and the whole reason that we got them is so she can start to stand and bear weight while having good support on those ankles.  I don't want her to slip while standing.  The orthotist (the guy that made the braces) and Sadie's teacher gave me some clues on how to find shoes that fit them.  I will search this weekend for a cute pair.  Wish me luck!