Saturday, March 31, 2012

Goodnight, Sadie

For a long long long long long long long time Sadie did NOT sleep through the night.  I remember days feeling like I shouldn't be driving because I ended up at my destination, but I had no idea how I got there! We spent a lot of nights bouncing or rocking...I watched a lot of movies on Netflix!  There were a lot of nights that I went into Sadie's room and patted and sang to get her back to sleep, then fell asleep in her bed myself.  And I can't even count the nights that we'd get all set and put Sadie to bed, then it'd take another 3 hours before she was actually asleep!

There were even 2 nights that I remember Sadie didn't fall asleep until 7:00 in the morning.

But for the last week (8 nights, actually), we've been able to take Sadie to bed, lay her down, kiss her goodnight, then close the door and not see her again until the morning.  It's like the Heaven's opened up and are shining down on our house.

Actually, last night her mouth hurt pretty badly (those molars are going to take a long time before we see them all!), and she was having a hard time settling down.  I went in there and patted, sang her 2 songs, she was calm, so I left.

More screaming.

We've found that when we lay her down she'll scream for a few minutes (usually less than 10), then she's quiet and we don't hear her again all night, so we thought we'd wait.  We got ready for bed and she was still screaming.

I went in there and patted some more.  She was so tired, her eyes were closed, but she was thrashing her head back and forth out of pain.  We gave her some Advil, I patted for a few more minutes and rubbed her head a little, and then we left her.

She stopped, fell asleep and we didn't see her again until this morning!   And that's the hardest night we've had in a week!!

I was sure we'd be woken up last night, but she is such a big girl she made it through the night.

I remember when we were reaching the end of car screaming and it felt like it was too good to be true, and I was afraid that any day we'd go back to screaming and my living hell would return.  This kind of feels like that.  She's had stretches before of sleeping through the night...but never for 8 nights in a row.

Could this be it?  This would be great timing.  I have really been enjoying getting a good night's sleep, having some evening time to wind down and hang out with Brian, and Sadie is SO HAPPY during the day when she sleeps all night...I'm enjoying that too.

My girl is really growing up, and I love this kid she's turning into!!

Friday, March 30, 2012

Saying Goodbye to Miss Tami

Today was our last day of PT with Tami.  It was kind of bittersweet.  I'm really sad to lose her from "Team Sadie", but at the same time, I'm not sad to lose that 45 minute drive one-way twice a week!!!  Sadie had such good therapy this week.  And today was no exception.  We arrived with smiles, worked hard and left with smiles.

I tried to make a picture collage video set to music of our time with Tami (almost 2 years!!), but my computer is acting strange.  So, maybe eventually I'll get it figured out and be able to make the video, but for now I'll just post some pictures and video clips from our time having therapy with Tami.

This was the first time we visited Tami.  Sadie was so little.  I think she was only 6 or 7 months old!!  We had had an evaluation with another PT, who just made Sadie cry, and made me cry, telling me that even though she fought it, we needed to force her into positions and manipulate her body the way it's supposed to go so that her brain will learn it.  When we found Tami, I thought we had hit the jackpot (I was right)!  She sang songs, she talked to Sadie like they were friends, she never did anything TO Sadie, only WITH Sadie.  Nothing was ever forced.  And PT became a positive place to go...even if all Sadie did the whole time was cry...

Over the months of going to Tami's PT Trailer (she had this motorhome fifth wheel hooked up to the back of her truck where she met kids to do therapy it's pretty cool), Tami showed Sadie she could do things with her body that Sadie didn't even realize.  Like sitting, and touching her head, and laying flat on her back, etc.

And Tami taught us not to have any fear and to try new the crawler, and the stander, and lots of other stuff too!

Tami came with us to the wheelchair clinic, then helped us figure out what to do with all the parts that came with our wheelchair when we got it!!  She also came with us to the spasticity clinic.  She was always willing to rearrange her schedule to come advocate for us and make sure we got what Sadie needed, not what somebody was trying to sell us or thinks is best without knowing her.

And now that we've get our Happy Chair (which Tami helped us a lot in getting, and cheered with us when we got it), Tami showed us how to use it this week.  Here are some pictures (and videos) of our very last therapy session with Tami today.  Sadie had a lot of fun and did a lot of work!

Next week we start with a new PT, Denise.  Denise knows she has big shoes to fill!!  I think we're going to really enjoy home-based therapy and I'm really excited to see where Denise will take us next.  I like Denise and I think we're going to really enjoy working with her!

Thursday, March 29, 2012

Bump Watch - 12 Weeks

Second Trimester, here I come!

When I was pregnant with Sadie the puking and feeling tired and yucky all day subsided between 13 and 14 weeks.  So, I'm starting to see a light at the end of the tunnel!!

How far along?  12 weeks!!

Weight Gain?  +10 pounds...I seem to be gaining steadily at about a pound a week.  That's good, right?  Considering I eat mostly cereal and Hershey's Kisses all day!

What's up with my Body?  I'm starting to feel it when I bend over to pick something up or have to scrunch my body up for whatever reason.  My tummy is starting to get in the way...and when I do that I get a little reflux.  I'm still tired in the afternoons, but my energy is returning for most of the day.  Still throwing up.  Still HATE the thought of Sadie's blended up tube food.

Sleeping is getting harder.  I wake up in the night and am uncomfortable and can't get back to sleep.  Sometimes I'm hot.  Sometimes my hips ache.  Sometimes I have restless legs.  But just about every night I have weird dreams.  Last night, for example, I dreamt that there was a handsome prince who was coming to see a princess, but her stepsisters were evil and they didn't let her go down and see him until they cut off her legs.  But it wasn't like they killed her, she just didn't have any legs (you know, like if you took the legs off of Barbie?).  So, her and the prince couldn't go anywhere fun.  Then her clothes disintegrated and she was left hiding behind a bush so he wouldn't see her, and she couldn't get back in because she couldn't walk.  Poor girl was weird.

Food Cravings?  More like food non-cravings.  Nothing sounds good.  Except cereal.

Movement?  Yes!!  I finally felt movements this week.  It seems super early, I know...but that WAS baby that I felt!!  It was in the right spot, it wasn't gas, and it happened more than once!!  Kind of weird, but so exciting too!!

Gender?  I'm starting to think that maybe it's a girl...but it could be a boy.  I don't know.  2 more months and we'll know for sure (I hope)

What I'm looking forward to:  I'm looking forward to the baby's kicks getting strong enough so that Brian can feel them.  He always enjoyed that with Sadie, and I think he's a little jealous that I can feel them so early before he can.

What I'm not looking forward to:  Not being able to carry Sadie.  It's already getting harder and harder to lift her, and when I can, I ask Brian to do it for me.  She's almost 30lbs of dead weight, and it's exhausting!  But I can still hold her when I'm sitting, so hopefully we'll still be able to cuddle no matter how big I get!

Speaking of being held, Sadie needed to be held this morning, so I did my best to take pictures with her in my arms (she is HEAVY!!)

Tuesday, March 27, 2012

Sadie loves swimming

I don't really have anything important to blog about today, mostly I just want to show you some cute pictures from swimming yesterday.  Since Sadie's floaty came in the mail, we decided to go down to the pool and try it out.  It was a beautiful day to do so (and we should have worn sunscreen)!!

Sadie  just loves the water so much.  I don't know if it's in her genes, or if it has something to do with her disability, or if we just started her early and so it's familiar and comfortable, but she loves it so much.  When you watch the video, you'll notice that it's almost like in the water is where she belongs.  It's like she's at home there.  She can move and kick and she probably feels more free than anywhere else.

We are definitely going to go to the pool a lot this summer!

What about your kids?  Do they like water?  Is it something you had to teach them to like or did they just like it?

Monday, March 26, 2012

Sadie's Feeding Therapy

It seems like since we got the swallow test report, feeding therapy has been a little sketchy.  It sucks because I feed Sadie all day and she does great, but one stupid test, with someone else feeding her, in an unfamiliar environment, and now our feeding therapist is nervous.  I understand that, she doesn't want to be responsible for hurting Sadie.  But it's also frustrating, because I don't think that test was accurate.

Sadie getting her teeth brushed by Kim for feeding therapy

Today we talked about different approaches and what could have made that test so inaccurate.

1. Sadie does so much better if we stimulate her mouth first with her toothbrush, a Nuk toy, a little vibrator, etc.  Nobody did that for the test

2. Sadie doesn't eat well first thing in the morning.  The test was the first thing she had in her mouth or tummy since the night before.  (Next time, I'm gonna stick to our regular schedule instead of "starving" her before the test...if you want her to eat normally, why would you change everything and still expect her to do so???)

3. Someone she doesn't know was feeding her.  Kim, our feeding therapist, said she will cancel other therapies if she has to to be there this time.

4. She was eating something she'd never had before.  Granted, they make it "taste good"...but Sadie's no dummy, she knew it was unfamiliar.  Next time the barium should be mixed into something we have given Sadie before and we know she likes.

5. It was an unfamiliar environment.  I don't think there's anything we can do about this, except try to make everything else as familiar as possible so as to minimize that she's got a big machine next to her.  I think her surroundings were distracting and she forgot to concentrate on her swallowing.

Sadie LIKES to eat.  And she does really well with it.  Lately she's been eating twice as much as she usually does in one sitting!!  We're hardly making her any tube food at all (plus it still makes me want to yak just thinking about it!).  And when she eats by mouth we see less reflux, we see more poop, she tells us when she's done or if she wants more, and she gets practice!!

Sadie eating some yummy food in therapy
So, we continue with feeding therapy, and I think I'm going to ask Dr. Wendy to recommend us for another swallow test in 3 months, instead of waiting a year.  I think we did it all wrong and Sadie deserves a second chance.  But at the same time, I also think that those tests don't really mean a lot.  Like Kim said, "they give us a snapshot of time...we know that Sadie eats this way at that time of day in that environment.  That's not conclusive of her eating/swallowing abilities."

In the meantime, we continue at home as if the test never happened, and we wait for another one...

Any other advice for making Sadie's next swallow study more successful???

Here's a cute video of Kim brushing Sadie's teeth!

Sunday, March 25, 2012

Lots of exciting things happening for us!

I'm feeling really good about life right now (despite the morning sickness...which seems to be getting better maybe).  I feel like I've been talking for so long about all the things we have "in the works" that I'm so excited about...and now they are finally happening.

We met our new OT today.  Her name is Tami (confusing?  Our current PT is also Tami) and she is really nice.  The coolest thing is that she's doing hippotherapy.  No, this isn't therapy with a hippopotamus!! It's actually horse therapy, or equine therapy.  Here's a short video I found on youtube about it that explains it really well (PS. the girl in this video is super cute!!)

Anyway, this new OT, Tami, has her own horses and is currently working on getting certified with the state to do hippotherapy at her home.  Until then, we'd have to go to a place where she can use someone else's horses and it'll cost us $30 each time we go.  We might go try it once or twice, but summer is coming, and it's getting hot.  Hopefully by the fall, when the weather cools down, we'll be able to go to Tami's for free and ride the horses every week or once a month, or whatever we decide.

I'm really looking forward to this kind of therapy, I think it will help Sadie with sitting, improve the mobility in her hips (we want to hold off surgery as long as we can!), and maybe even encourage walking someday.

Any of my you done hippotherapy?  What did you think?  Did it help your child with balance and walking?

We also will start with our new PT the first week of April.  We are so sad to lose Tami, she has been a huge help to us and almost like a member of our family for the last year and a half, but our new PT, Denise, will come to our home.  She is a lot like Tami in the way she does therapy, and I'm excited to work with her.  I'm also super excited not to have to drive 45 minutes one way twice a week to go to PT, which is probably the most important therapy for Sadie right now.  Denise is also willing to meet us at the pool when it gets hotter and do some therapy in the water, which I think Sadie will really enjoy.

We have a great respite provider (aka babysitter) right now too, who we love.  She is reliable and responsible (and it helps that I know her family and have known her for the last 6 or 7 years), and she is good with Sadie.  I hope that she is able to stay with us for a long time...but I know that when you're 20 years old and your whole life is ahead of you, big things can happen pretty quickly, and we'll eventually lose her.

In May, we will meet with the school district to discuss Sadie's transition to preschool.  We are trying to get her in before she's 3 since we have a new baby coming.  It's hard to believe that conversation is already starting!!  My little girl is almost big enough to go to school!!

We now have Sadie's Happy Chair, her neck swim floaty came in the mail, her stander has been ordered, and she's eating a TON by mouth (even though her swallow study says she's aspirating...I don't totally trust or believe that test)!!  We are looking forward to a great rest of the year!!

Saturday, March 24, 2012

The Happy Chair

Back in October I ran into a friend and her precious little special needs children.  We were all at Michelle's for movement therapy and their appointment was right after ours.  She brought in these fancy foam chairs for her kids (who are 2 and 4 and have multiple disabilities due to a genetic disorder) and her little one was actually sitting independently!!  Of course I asked her about these chairs, they were different from one another, but the fact that she was bringing them to therapy must have meant they were something amazing.  She called them Happy Chairs.

 This is Sadie trying out her friend's Happy Chair...this chair doesn't meet Sadie's needs

She gave me all the information and got me a phone number and the next week I called the A.D.A.P.T. Shop through Southwest Human Development.  The Adapt Shop helps children with special needs by creating adaptations to their equipment to help them function better.  And a Physical Therapist named Gayle has started working there to make these Happy Chairs out of foam and plastic.

The Happy Chair is made specially for each kiddo to meet the kid's needs.  It supports them where they need support, and doesn't where they don't.  It's purpose is to strengthen muscles and to increase the trunk control so that independent sitting can be achieved.  And they're free!!

(Here's a video clip from the local news showing these Happy Chairs, and actually showcases our friends who we saw that one day at Michelle's who told us about the Happy Chairs!)

It took until February for someone to call me to set up a time to come measure and evaluate Sadie.  Then I was told it would take 4-6 weeks for the technician to actually build the chair for Sadie out of foam.  But like with anything in the special needs world, we were prepared to be patient.

But, it was really hard to be patient for our Happy Chair because we were so excited.

Well, yesterday Gayle came back over and delivered our Happy Chair.  And it's as amazing as it's supposed to be.

Sadie's new Happy Chair
Sadie's Happy Chair is above the ground a little bit so her legs don't have to be straight.  However, that base is removable and eventually this will be more of a floor sitter.  The notches at her shoulders hold her a little more stable (to keep her from leaning...she's a leaner!), and the two things on the back are like a head rest.  But they're not that comfortable.  She can rest her head backward (notice when she was in her friend's chair she wanted to lean backward), but it's not really that comfortable, so she'll want to come right back up...I witnessed her do exactly that!  And there's a tray and an easel for her to interact with toys and activities and the ipad.
Sadie's first try in her own Happy Chair
Look how straight and big she's sitting!!  And she did this for about 30 minutes!
I really really really really really really want Sadie to be sitting independently, so I asked Gayle what was a reasonable timeline for expecting her to be strong enough to do it.  She didn't really give me an answer, of course, but she said that it depends on where kids start.  And she noted that Sadie already had some advantages, like not needing complete head support, and not needing hip stabilization in her seat.  I asked if it was reasonable to have the goal to be sitting by the end of the year, by her 3rd birthday, let's say?  She just kind of shrugged.  But I think that's a reasonable goal, considering what I've seen happen with our friends and how far they've come in their happy chairs.

By the time Sadie turns 3, I want her to be sitting independently.  And I think she can do it, too!

Sitting independently means potty training, it means baths, it means showers!, it means roller coasters!!!  It's kind of a big deal!  I will keep you posted for sure as we use our Happy Chair more and more. do I decorate this thing???

Friday, March 23, 2012

The Spasticity Clinic

Wednesday morning we got ourselves out of the house bright and early to see Dr. Kwasnica at the Spasticity Clinic. Dr. Kwasnica specializes in spasticity, which is increased muscle tone often found in kids with CP. When kids have tight muscles, or they hold their body in certain positions, it can inhibit the growth and development of bones and tendons and eventually inhibit mobility of certain limbs. Sadie is young, and we don't think we have a huge spasticity problem (yet), but we also see the importance of seeing doctors like Kwasnica early on so that Sadie's progress can be tracked over time and interventions can be made quickly when needed.

I had no idea what to expect when we went into this appointment. I had had long talks with our PT, Tami, about what Dr. Kwasnica might recommend. Sometimes Botox is injected into muscles to loosen them for a period in hopes that increased coordination can result (because it's really hard to reach and grab something if your brain is telling your arm to always stay bent!!). Sometimes they recommend a drug called Baclofen (which, if you remember Sadie was on when she was's the one we ODed on and ended up in the hospital). As kids get older they may insert an automatic Baclofen pump under a person's skin that administers the drug straight into the spinal cord. (scary) And having never met Dr. Kwasnica, I don't know how eager she is to intervene with medicines and procedures, so I was prepared to request as much intervention as needed before going too extreme. And I asked Tami to join us at the appointment also (as backup).

The other thing that was making me nervous was that our appointment was at the CRS clinic (remember, me talking about Child Rehabilitative Services a couple of days ago? State run, etc.?) which is famous for taking a long time. Our appointment was at 9:00am, and I was worried about getting home in time to sign on and work at 11:30!! I know some people who, when they visit CRS, they clear out their entire day.

It was NOTHING like I had anticipated. We spent more time waiting in the line to check in than anywhere else. Once we checked in, we barely were able to sit down before they called us back.

I'd like to just interrupt the story here to say that when they weighed Sadie, she was 27lbs and 8oz, which isn't gaining, but it's nice to know she isn't losing weight since we started our blenderized diet. She was also between 35 and 36 inches...long and skinny.

Then when we got into the room, I barely had time to get Sadie's diaper changed and her out of her jammies before the doctor came in. Seriously, we were done and out of there by 9:30!!

So, here's what the doctor said:

She isn't concerned about her range of motion, she could see that Sadie CAN flatten her feet, straighten her arms, get her arms above her head, and open her hands. But we explained that when she does tighten up, it's usually due to something environmental that is keeping her from being relaxed. Maybe it's pain, maybe it's wanting something she's not getting so she's mad, maybe it's being uncomfortable in her position, or even being overstimulated in her environment. The doctor was more concerned about controlling these environmental factors so as NOT to even get Sadie into that cycle where she's tight.

How do we do this???

She mentioned the ativan.  We mainly use the ativan at night to calm Sadie down so that she'll fall asleep.  But sometimes if she's very upset and agitated during the day, we'll use it then too.  We hardly ever use the recommended dosage, usually more like half the amount is good enough!

She also mentioned that she wants Sadie to have SOME tone, meaning she doesn't want her to be totally floppy, because she is learning to sit and she needs to maintain some of that control and stability to get stronger.  She also doesn't want to relax Sadie's muscles too much with medicine because of what the results of the swallow test told us on Monday...she's afraid that relaxing ALL her muscles (like by giving her baclofen) will make her aspirate more, therefore making it unsafe to eat.  And also doing that will worsen her reflux...which we finally just got under control.

So, I think she was pretty conservative in just wanting to continue with therapy and no big interventions just yet.

However, we did mention maybe fitting Sadie for hand splints.  She thought this was a good idea.  Sadie's hands are frequently in fists.  And even when they're relaxed, they're never flat open.  She can't clap.  Lately, I've been working really hard on stretching those hands out so that her tendons don't get too tight, and I think it's helping, but splints would also help with muscle memory.  She'd mainly wear them when she's sleeping, because we anticipate that she'll hate them.  And Dr. Kwasnica said that if they're making her mad and causing her to be more tight, take them off.  (I wonder if we could put them on actually AFTER she's asleep...that's dangerous territory!)

Overall it was a good, positive appointment.  I really liked Dr. Kwasnica, and of course she was smitten with Sadie (like most people are!).  She just kept laughing at her and Sadie was bringing out her personality and being super cute.  Dr. Kwasnica just kept oohing and ahhing over her hair (again, like most people do!) and when we were done, she said to Tami, "really?  You have to let her go?!  With that hair and that smile?!"  (We have one more week of PT with Tami and then we're going to start in home PT with somebody new, we're really sad.)

We go back in a couple of weeks to be fitted for hand splints.

Thursday, March 22, 2012

Bump Watch - 11 weeks

Is it just me or when you're pregnant (or really want to be pregnant) do you see pregnant women EVERYWHERE???  I swear the other day at Target I saw no less than 8 pregnant women...and I was only there for about an hour!  It's crazy how everybody's pregnant right now!!

So without further's my "bumpdate"

How far along: 11 weeks

Weight Gain: +9 lbs

What's up with my Body??? I feel like the sickness is waning some days, but then other days I feel like throwing up all the time. It's hard because I get hungry, but there's nothing that I want to eat. I've started to feel some cramping and bloating, which makes me think baby's growing! Still constipated, still not sleeping well, having vivid dreams. Oh, and I've started having reflux...not just heartburn, but full on reflux. Like Sadie has. Poor baby, I know can really feel empathy for her.

Food Cravings: I want chips and salsa. But it has to be restaurant chips and salsa. I mean, I have chips and salsa at home, but I want to sit down at a restaurant and have the server give me unlimited chips and salsa...and maybe queso dip also. Unfortunately, I think it's the gorging of chips and salsa that's causing the reflux.

Movement: I have a lot of gas, I think. So, when I feel rumbling in my tummy I always wonder...but it usually materializes itself as gas (if you know what I mean). But the other night, I really thought I felt something way low on the left side. I was sitting up against Brian on the couch and we thought maybe baby was gravitating that direction because it was warmer. I don't know though, it seems too early to be feeling anything.

Gender: I have NO INDICATION of whether it's a boy or a girl. And frankly I couldn't care less if it's one or the other. On the one hand, I think it'd be fun to have a house full of little girls. On the other, it'd be nice to have a big, strong boy to help lift her sister. We'll be excited when we get to find out, but we don't spend a lot of time now talking about if it's one or the other.

What I'm looking forward to: I'm really looking forward to being done with "morning sickness". I am thankful for the healthy hormones that are making me sick (and tired), but I'm really ready to move on. I'm also looking forward to getting bigger. Right now I'm in the in-between stage where my normal clothes don't really button, but maternity clothes are still a little too big...but I wear them anyway because they're more comfortable.

What's the same as last time: The toothbrushing gagging has returned. For most of my last pregnancy, and even for months after Sadie was born, I gagged everytime I brushed my teeth. I am back to doing that. It hasn't made me throw up yet, but it sure is uncomfortable.

Maternity purchases: I bought a swim suit. Last time I was pregnant all winter and didn't really feel like I needed a maternity swim suit. I bought a top to wear in the birthing pool so my pictures wouldn't be naked, but that's it. This time, especially since we bought that floaty for Sadie, I expect we'll be down at the pool in the water a lot this summer, and I need a cute swimsuit to wear!! I can't wait to receive it in the mail!!

It seems silly to do this again so soon...especially since nothing has really changed.  But that's okay.  These pictures didn't turn out as well as I wanted them to.  I might try something different next week.  Any ideas?

Wednesday, March 21, 2012

Don't be too quick to judge, instead look at the blessings

So, it's been around Facebook. If you're part of the special needs world, I'm sure you've heard about it. Many many others have also blogged about it... the couple who sued for wrongful birth after their child was born with Down Syndrome. (read about it here)

A lot of people have opinions about this story. Many people are judgmental toward this family, and rightfully so. I didn't get a say in Sadie being born with brain damage. If I knew ahead of time, would things have been different? Probably not, but it may have been easier with some of the grieving out of the way and resources already in place. It's hard to know how you would actually feel if you were in this couple's shoes, and that's why it's dangerous to have such strong judgments about them.

I don't want to write about how I understand how they felt because I had this perfect pregnancy and then everything went south at the very end. I don't want to talk about my opinion on terminating a pregnancy if you know ahead of time that child has a disability. I want to give perspective on the financial aspect of raising a child who will need a lifetime of therapies, additional caregivers, special equipment, and eventually an adult living facility.

Right now $3 million dollars sounds like freedom to me.

Let's just use Sadie's wheelchair as an example...

To be accepted to the wheelchair clinic here in Phoenix, Sadie had to be eligible for a program called Child Rehabilitative Services (CRS). It's a division of the state healthcare system and it's like a safety net to catch disabled children who aren't receiving appropriate care/services. Once we were enrolled, we had to make an appointment to see a CRS pediatrician...even though we have an awesome, wonderful, completely capable pediatrician of our own. (We refer to the CRS pediatrician as "the gatekeeper.") The gatekeeper had to see Sadie and establish what she needs and that those needs are being met. The gatekeeper saw that Sadie has everything she needs and a perfectly competent care team in place (with an educated and brave Mama at the head), so she released us and basically said we don't need to come back...but we had to have that appointment to be referred to the wheelchair clinic. The gatekeeper has to authorize and refer all things CRS.

Then we had to make an appointment at the wheelchair clinic. Mind you, these aren't appointments like, "we have an opening tomorrow at 3:00"... we're scheduling up to a month in advance!! When we got to the wheelchair clinic we basically had 3 chairs to choose from. And really, we had kind of made up our mind before we got there, so we just needed to find the right size.

Then it got complicated. Since we have private insurance, as well as state provided insurance, there were authorization forms that had to be submitted and approved before the wheelchair was even ordered. Once our private insurance said they'd pay the 80%, then they had to get authorization from the state that they'd pick up the extra 20%. Then the wheelchair could be ordered, which took up to another 4 weeks.

I saw the price tag. Sadie's wheelchair was $2700. And it took us 2 months (from the time we finally had our appointment at the wheelchair clinic) before we got it.

And we go through a similar process for every piece of equipment or new therapy or medical procedure we need for Sadie.

Now imagine if I had $3 million dollars at my disposal to take care of my child. I could order that wheelchair (or any other wheelchair I wanted that might actually be better) when I wanted it and receive it within normal production time. I could pay for extra therapy, or even private therapy (like music or water or movement) without worrying about it. I could remodel my house as needed to install wheelchair ramps or a roll-in shower. And I could schedule surgery when my child needed it instead of waiting for approval from insurance before anything can be done.

I get it. And I'm not sure if I would, but if there was someone I could sue for Sadie's birth trauma, I might, knowing what I know now about "the system." The system runs our lives. We constantly fight to maintain sanity in our household by receiving the services our children deserve. I see families devastated, scared, and exasperated from the power the state holds over them because they NEED these services and they are being threatened of losing them. It is exhausting to constantly be fighting to maintain what should be considered status quo.

This post isn't about whether that family was or was not given injustice by that test being wrong. I don't judge them, even if I don't agree with their decision. I just hope that it offered you a different perspective on what they're facing and what kind of freedom their daughter (and their family) has gained in being awarded this money.

Be happy for them, because, not only have they been blessed once, with this sweet child of theirs, but they've been blessed twice, with financial freedom.

Tuesday, March 20, 2012

Sadie's first therapy table

This last weekend Sadie got a therapy table. I had been talking to a friend about the one she has in her therapy office, because I like it a lot and I think we could really benefit from something like that at home, back in December. The goal was to have one made or to make one in time for Sadie's birthday. Unfortunately, we moved, then we went to Oregon, then my cat ran away, then school started, then Grammy came to visit, blah blah blah...and the table never happened.

Well, last week, since Sadie was at Ryan House and I had all this extra time on my hands, I finally called a guy who I was told could make us one for a reasonable price. I told him I wanted it to be at sitting height and that yes, 4'X6' was a good size and he said he'd probably have time to make it over the weekend. WHAT??? This was Monday! I am so used to everything special needs taking 4-6 weeks standard that I was shocked by this response...and a little excited.

But it gets better...he called me Friday and told me it was done and we could come get it on Saturday!

My mother in law came over to hang out with Sadie, while Brian and I drove almost an hour (one way) to pick up this table. It was too wide for the bed of the truck, so we were lucky we left the lid on and could just strap it down to that. It probably could have been more secure, but we made it home okay!

It quickly made camp in our living room. It was supposed to rain Saturday night, so we didn't want to leave it outside, since it's raw wood. Plus it needed to be painted or stained or something, so why not right here in the living room??? (we couldn't use it until it was treated with something, so I was eager to get that done right away!)

So, there's this routine that I tend to go through with my dad everytime he comes over. I say something about needing something we don't have, he tells me he's got an extra whatever it is and I should have said something because he could have brought it over! Well, not this time.

I called my dad early Sunday morning and asked if they had any old paint (that was still good) in their garage that I could use on Sadie's table. I remembered at one house they lived in a long time ago they painted one wall of their bathroom this gorgeous turquoise color and I remembered seeing extra paint in that color in their garage, and I didn't even know if the paint was still good or if they still had it...but it was worth a call.

Turned out my dad had a brand new, still sealed can of that blue paint...and a brand new, still sealed can of primer! Excellent. Free paint! That crap is expensive!

Oh, and he came over to help me paint the table too.

So, after a few hours and some minor paint fumes, we got a coat of primer and two coats of paint on our new table. And then let it sit over night to "cure."

Yesterday afternoon, I rearranged some things and set up the table for Sadie and she seems to enjoy it!! It looks good in our living room because it's a kid color and it goes with the other kid stuff. Eventually it'll be moved into a sensory/play room that I plan on creating for our babies, but for now, it's fine right where it is.

I'm really excited for this table to become a permanent part of our family. Not only can it be used for changing diapers (Sadie is getting too big for that changing table!) and for doing therapy stretches, but it can be used to pull up to standing, to lean on as support or to sit at with a chair like a big table!! Things can be placed on top of it and her stander can be pulled up to its side so she can interact. Or it can just be a place to lay and chill.

One friend of mine suggested decorating it with Sadie hand or foot prints each year as she grows and using a paint pen to write on their her achievements and milestones. I thought that was a great idea. We'll start with feet prints, and hopefully those hands will be open enough someday that we can do handprints (that's a milestone in itself!). And maybe Sadie will have enough fine motor coordination one day that she'll be able to draw her own picture or write her own name on the cool would that be?

This is definitely a blessing that we are very lucky to have.

Monday, March 19, 2012

Sadie's second swallow study

This morning we had a swallow study. Our last swallow study was when we were in the hospital when Sadie got her NG tube last May. So, it's almost been a year.

We did a lot of waiting, and Sadie was so good. I was really proud of her. I scheduled it first thing in the morning because I figured it'd be easier to not feed her if she was sleeping! So, I didn't even wake her up, I just pulled her out of bed and put her in the car. We worried about getting dressed and stuff once we got there and checked in! (we had plenty of time)

All dressed up and ready to wait!

By the time they started the test, she had been awake for an hour and a half, and was plenty hungry. That just made the test go better.
Getting all set to swallow some barium!

I wasn't able to participate because I'm pregnant and it's all done with X-Ray, so I stood behind a wall and watched through a window. The cool part about doing that was that there was a computer monitor right in front of me with clear video of her swallowing. Last time we did this, I was feeding her and didn't get to see the video at all as it was behind me, so I was pretty excited about this.

My view from behind the prego wall.

They started with honey-thickness liquid. Sadie swallowed that perfectly.

Then they tried nectar-thickness liquid (which is a little thinner) and the first 2 or 3 swallows went down just fine, but by the third or fourth she had silently aspirated a tiny bit. Mind you, what I was told was that it went down just fine, then at the very end she aspirated, so it was likely from fatigue.

They knew they couldn't go any thinner, so they did the pudding consistency, which is basically like giving her a puree with a spoon. She also aspirated a little bit of this. Again, because her muscles were probably fatigued.

I took a picture of the computer monitor showing the test. It's kind of hard to tell what you're looking at, but that little black line I'm pointing to is the liquid she's swallowing. (I was told I couldn't take video of the monitor, but I should have anyway!!)

Finally, they tried giving her a cookie. She struggled with the cookie. I think it was just a little bit more dense than those puffs we give her and she doesn't quite get yet the whole chewing thing. I mean, she can do it if it's on accident, but I don't think she understands moving the food to her teeth for the purpose of chewing. They ended up having to give her a little liquid to help her swallow, and when that wasn't entirely successful, they swabbed her mouth with a cold lemon swab to encourage saliva and swallowing. Then she finally got it down.

So, what does all this mean? Nothing. It basically means we're right where we were a year ago. I don't know if that's good or bad, but I was hoping at least for some progress. I want Sadie to be independent of this tube someday, but she has to get better at swallowing first...a lot better!

The lady who did the test told me that if she were looking just at these test results she'd tell me that it's not safe to give Sadie any food by mouth. (sad) But looking at the whole child and the situation, knowing that we give her LOTS of food by mouth, she said she'd recommend doing just what we're doing. Professionally, she recommended giving 4 or 5 bites multiple times a day, and starting with tiny 1mL amounts of honey-thickness liquids multiple times a day. After all, she can't get better without any practice.

She also mentioned that it's a big deal that Sadie's really never been sick, and that she's never had pneumonia. She said some kids just have strong lungs, and some kids aspirate once and they're in the hospital. I guess we just got lucky on that one!

So that's that. Not really that exciting, but at least we know. She didn't recommend another swallow study for probably a year because based on Sadie's lack of progress in this last year, she doesn't anticipate fast progress really over the next. (sad again)

Practice practice practice Sadie!!