Sam Sam the PT man

Yesterday was our first appointment with our new PT, Sam.  We have decided to take a different direction with PT and go back to center-based therapy.  Unfortunately, that meant we had to say goodbye to Denise.  But it also means that we say hello to Sam!

Sam is a brand new PT, which makes him eager to work with Sadie, but also awkward in handling her.  You can really tell the difference between someone like Tami or Denise, who have been doing this for years, and Sam, who's brand new.  He'll get the hang of it though, and being in a clinic/center, he has a lot of resources to draw from, seasoned veterans to learn from, and equipment to use.

Sam and Sadie working on sitting

Trying to get her to push up on her arms

Yay Sadie!!  I don't think she's been in this position for a LONG time!

This was right before she threw up...the first time

She liked this, the idea is to stretch out her back and shoulders to prevent scoliosis from developing due to rounding

We also brought our Happy Chair with us so Sam could see it, and he confirmed what I kind of already thought...she's too big for it.  Plus, we kind of felt like it needed to support her in a different way.  So, I called them today to ask for a re-evaluation of that.  I'm thinking we need a whole new chair, possibly.

Anyway, we'll be seeing Sam on Mondays and Fridays.  He's only about 15 minutes away, and I'm excited to see how far he can bring Sadie in her physical development!

PT in the pool!!

Today we had Physical Therapy in the swimming pool!!  It was such a perfect day for us to do it, and since our community pool is heated, it's open all year...which means we don't have to wait another month to be able to swim!!  And they are so nice in the office, because I have to buy a punch card to come swim, and they don't punch Sadie, and they told me they won't punch Denise either (our PT) since we're coming to do therapy.

I think we're going to start coming every Tuesday for the rest of the summer.  Sadie loves the water so much, and it was such a good time of day, and it gets us out of the house (without having to drive very far...the pool is less than 2 miles away).

long legs!!

Denise did a lot of the same things I do with Sadie in the pool, like dragging her, swinging her around in a circle, and just letting her kick on her own.  But she also did more that I don't do... therapy stuff like stretching her hands or her ankles.  It was good for me to see so that we can try to replicate it another day of the week (maybe Saturday?).

Anyway, I'm really excited to see where this "new" kind of therapy takes Sadie and I look forward to having a great summer in the pool!!

Sadie's new Physical Therapist

We didn't waste any time once we were done seeing Tami as our PT, we started right up with Denise the next week.  It's sort of strange to have PT at our house, but I'm sure we'll get used to it.  It's nice to not have to go anywhere, that's for sure.

Denise has now seen Sadie 2 times, and they're still getting to know one another.  She's ambitious with Sadie and agrees with a lot of my goals I have for Sadie, saying they are very reasonable.  And she's nice too.  They seem to get along well.

What I didn't know about Denise is that she's a Beaver.  (For those who don't  understand this reference that means she went to Oregon State University... my family is from Eugene, home of the University of Oregon Ducks.  The Beavers are our rivals, and we take our rivalry seriously in Oregon!)  She was funny when she told me this.  She said, "yeah, I saw your 'Go Ducks' sweatpants the first day I was here, but I figured I'd just let it go." hahahaha!!

I guess she also has an OSU sticker on her car.  Brian said to me after she was gone the second day, "you know where she went to school, right?"  I told him, "yeah, if I'd known ahead of time, I wouldn't have hired her!!"  hahahaha

Just kidding.

She's awesome and I'm really excited not only for her to work with Sadie, but just to be her friend.  She knows a lot about food and canning and preserving and gardening and things.  We are going to get along just fine...despite her alma mater.

Here are some pictures from Sadie's first time working with Denise...

This is amazing, we need to work on this position more

I'm trying to look at the camera, Mama, but this is hard work and I need to concentrate right now

Touchdown!!  Go Ducks! hahahaha

Any advice for PT in the home?  It's just still weird for me...

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 things...like 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!

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!!

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 little...it'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.

Breaking up is hard to do

We're going to have to break up with daycare.

Here's the deal. Every Wednesday and Friday I drive almost 45 minutes to take Sadie to Physical Therapy...that's how much we love our PT! And I figured since I'm already that far away, why not try taking Sadie to the special needs daycare (United Cerebral Palsy) which is also 45 minutes away from our home, but only about 10 from PT. Then, while Sadie's at daycare, I spend 4ish hours at Starbucks working.

Sounds like a good deal, right?

Last week our beloved Physical Therapist told us her business is changing and she's no longer going to be at that location, but instead only do home visits. Her business partner has taken another job and will be significantly decreasing her patient load, so they have to cut down on costs to stay in business. And her home visits won't be anywhere near where we live. *sad face*

But, as sad as I am to lose Tami, I'm not really that sad about not driving 45 minutes one way twice a week, or having my butt go sore from sitting in a hard wooden chair for 4ish hours, or getting home and realizing that I smell like coffee... or paying $100 a week for daycare. And Tami said she could see Sadie at daycare, but I told her, if we're not driving up there specifically for therapy, I'm not sure I want to do daycare anymore.

Brian agrees. We'd be saving a lot of money by breaking up with daycare. In fact, we're even thinking about taking that money and spending it on a cleaning lady instead. (my dream come true...)

So why am I nervous? Is it because we haven't really been there that long and I feel like they made some huge adjustments for us? Is it because I feel like I might regret it? Is it because I'm afraid they're going to shove a paper in my face "reminding" me that I signed a contract for a certain amount of time? (I don't remember doing this, but that doesn't mean I didn't) I guess I should just do it.

Dear daycare, it's not you, it's us. We love you, but you're inconvenient, and expensive, and we need to move on. I hope we can stay friends.

Love,

Sadie and Mommy

What we need is a King sized bed!

This morning Sadie was an angel. She woke up happy (no sensory freakouts), she ate breakfast in her mouth (as opposed to in her tube), and we were off to therapy with Miss Tami. Sadie is a beautiful car rider these days and we listened to Christmas carols on the radio and I talked to Grandpa on the phone. We even stopped for gas before we got to therapy! No screaming.

I swear Sadie LOVES physical therapy. She always gets so happy when we walk into the trailer. I think that she knows that she's going to get to do things she likes (ie. sitting, standing, etc) even though she has to work hard to do them. Therapy went pretty well, she got in the stander and even though she liked it, her mouth hurt, so she yelled a lot. We tried to make her happy, but finally Tami said to her, "fine, do you just want to get out of the stander?" Sadie immediately got quiet, looked in Tami's direction and smiled really big.

This girl knows what she wants!

When we left, we had to run a couple of errands...which is always a lot of work and a little unpredictable. We went to the Apothecary shop to pick up Sadie's prescription. It didn't take long, Sadie smiled the whole time. It was like she was just happy to be doing stuff with Mama. Then we went to the post office, which took a little longer. Not a peep. Sadie was so good. No yelling, no whining, even getting in and out of the car multiple times went smoothly! She was amazing.

Then we got home and it all went down hill. There was whining and puking, which turned into yelling. Then we had a poop-splosion, which got EVERYWHERE... only to find that we had exactly 2 wipes in the whole house! (Mama had to be a very strategic wiper!) Then there was sort of a nap, which didn't last long. Then more puking and more yelling. Sadie's mouth hurts so bad and she is so uncomfortable that I am shocked that she was as good as long as she was this morning. But it's seriously like I have 2 different children.

Tonight will probably be like every night for the last week...sleeping between Mommy and Daddy. Each night we try to put her to sleep in her bed, and some nights it works. But we get to a point where we have to decide if we want to sleep with her in her really uncomfortable cheapo twin-size bed, or if we want her to sleep with us in our really nice, really comfortable tempurpedic bed. Last night we only had to go in there twice before we finally just brought her to bed with us at 1:00am.

If I knew it was going to be like this, I would have insisted on a King sized bed!!

Thanksgiving Day 4

Last night, Brian gave me a scare. He called me from El Paso to tell me that he would get a call today letting him know how a restructuring in the company would effect his position. He was told that everyone would have a job, but some may be demoted or relocated, and some positions may have different responsibilities than they did before. He was worried that he'd be asked to relocate to Las Vegas, because there are 5 or 6 people that are here in Phoenix... only 1 person works in Las Vegas. All evening we texted back and forth fretting about what kind of news he was going to get today, and it came down to me saying that if he was asked to work in Las Vegas, he'd have to commute. I can't leave Phoenix, not now, not after I've worked so hard to establish all these fantastic resources here for Sadie (and me) and our family.

To start with, we have an AWESOME pediatrician. We attended a conference at Phoenix Children's Hospital a couple of weeks ago, specifically about cerebral palsy, and our pediatrician (Dr. Wendy) spoke about primary care. Her focus was on coordination of care, like being at the head of everything and managing all the appointments with specialists, prescriptions that are written, and changes that are made in the management of care. When the question and answer portion of the morning came, people raised their hands and asked her, "how do we get our pediatrician to do that???" I didn't realize that other doctors DON'T do that. We've always had Wendy and Wendy's always been our contact person for everything. I can email Wendy anytime of day and she is always good about getting back to me within hours...even if it's a Sunday or she's on vacation. When I needed to change something for Sadie regarding GI, I contacted Wendy because contacting the GI doctor would mean leaving a message for the nurse who then would leave a message for the doctor and it could be an entire day before the nurse got back to me (if I was able to take the phone call) and then the answer probably wouldn't make sense because the doctor didn't understand the question. But Wendy was able to take care of the whole matter, including communicating with the GI doctor, within 48 hours. I've emailed her pictures of a rash or what I think might be an infection so she knows whether we need to come in or not, she calls prescription refills in to the pharmacy when I ask, and she gives me hugs (especially when I cry). I feel like she's more than my child's doctor, she is my friend, and Brian and I's partner in this business of raising a special needs child.

Sadie has 5 therapies a week. She sees a developmental vision therapist from Foundation for Blind Children on Tuesdays. Thursday mornings she has occupational therapy who works on sensory issues and spends a lot of time focusing on Sadie's hands (fists) and putting weight through her arms. Friday mornings Sadie has feeding/speech therapy. And Sadie sees the physical therapist twice a week on Wednesday and Friday mornings. When we got approved for these therapies, Annie, who works at the Dept of Developmental Disabilities (she's our coordinator from the state) sent me a list that was like 90 pages long. I weeded through that list for days, calling everyone I could to find therapists that were home-based. Sadie screamed in the car and it was unrealistic for us to go to therapy. But, we live in some kind of therapy black hole and many don't come to our specific neighborhood. We do travel to go to PT (which Annie told me we were lucky to even HAVE PT at Sadie's age), but everyone else comes to us, which makes my life so much easier (right, like my life is easy).

Our PT, Tami, doesn't come to our house, but she is worth driving to...and when we move, I plan to continue to make the 45+ minute drive to take Sadie to see her twice a week. Tami is not just a therapist, like Dr. Wendy, she is also a friend. She is a huge advocate for special needs children in our community, and she's like a "lending closet" and never hesitates to let us borrow something indefinitely. Tami is the one who introduced us to the Chill-Out Chair and let us borrow hers for like 6 months until we were able to get one of our own. And recently she gave us a high chair that someone donated to her because their kid had grown out of it. She is generous and kind and has such a positive outlook for Sadie's future. Tami gave me hope in the area of potty training. Tami keeps me positive about Sadie walking. Tami takes time out of her schedule to attend our other appointments like wheelchair fittings, and the spasticity clinic. Everybody knows Tami and everybody likes Tami and I feel lucky to have Tami in our lives. I would hate to have to leave her.

There are a number of amazing things we have access to just because we live in a big city with a very prominent children's hospital. There is The Foundation for Blind Children with all its resources and programs. There is United Cerebral Palsy, which has a childcare facility set up for special needs children. I'm hoping we can start taking Sadie after we move just so she can be around other kids a couple of days a week. We have a ballet company that includes all children, special needs and typical and puts on fabulous productions that use everyone no matter their ability (watch a video here). And there's the ADAPT Shop, which we're just learning about. The ADAPT Shop is through Southwest Human Development and provides low-tech solutions to those with physical challenges. We're hoping to get something called a Happy Chair through them soon. This is a chair that is built according to Sadie's size and needs that will support her where she needs it, but also encourage her to sit independently. I'm really excited to be taking part in this program.

Before we had kids, we discussed someday moving out of Phoenix, but things are different now, and you can see why it's beneficial for us to stay here. And these just scratch the surface. There are friends, other families, respite providers, events to attend, etc. Sure, things will change when we move across town. We'll have some different therapists and things, but I know enough people now to ask for referrals so that I don't have to wade through another huge long list of names of authorized agencies.

And in case you were wondering and waiting to hear what happened with Brian's job, he got the call and we're not moving to Las Vegas. His job changed a little, but as far as anything that effects me, or our family as a whole, everything's the same...only he'll probably be traveling less, which means he gets to be with us more often. So, we move forward with our plan to live here for the rest of our lives.

My very special birthday present

Yesterday was my birthday. It didn't feel like a birthday, there wasn't any singing or balloons or even people jumping out from behind furniture yelling "SURPRISE!!" Nope, just a normal everyday day...with cupcakes, of course.

But today, the day AFTER my birthday, Sadie and Brian gave me the most wonderful gift! Sitting. I couldn't take Sadie to PT today because I had to proctor state testing (and yes, I did that yesterday too...on my birthday). So, Brian came home with this video and we can't stop watching it. It's so amazing.

365 project - #4

Today's picture is called "learning to sit." This was at physical therapy (PT) today. Sadie is getting so strong and even though it's hard work and feels really different to her, she works hard!

Sadie is still working on being on her tummy. Having this pillow under her helped motivate her to get her head off the ground. She is also learning to bite, so she is working really hard to get her hands to her mouth, and she really wanted this rag in there!!

We put Sadie in the Creepster-Crawler (the dinosaur) for the first time. She hated it, but only because it was so different and disorganizing that she didn't have any idea what to do about it! I just laughed at her! She did such a good job.

A couple of times she stopped her screaming and trying to roll into a little ball and tried to process what her body was doing. But it didn't last long before the screaming started again! I think if we keep exposing her to this device, before we know it she'll be crawling! In the moments that she was calm, she got her legs moving like she was going to take off...it's just those stinky ol' arms that won't get with the program!!

Here you can see she's so mad because her body won't do what she expects it to! haha! What a big girl!!

therapy update

Sadie hasn't really been to PT since the first day of movement therapy, mostly because of scheduling conflicts, so yesterday was our first time in 3 weeks! I had forgotten how much I love Tami. If nothing else, going to PT is therapy for me! Anyway, she really noticed a difference in Sadie.

First of all, we had been in the car for almost an hour because we were coming from Mesa where we saw the chiropractor, but not the acupuncurist, because he was running late and we had to go. So we get to make a separate trip back to see him (sarcastic yay). We pretty much drove the entire 101 loop yesterday. For those of you who don't know what that means, I have a graphic demonstration for you below:

27.3 miles, but there was an accident in the tunnel, so it took longer. Screams the whole way.

38 miles, but we stopped at Jamba Juice and took a sanity break, so it took almost an hour.

20.1 miles of pure car screaming!

Total of 85.5 miles, and pretty much the ENTIRE 101 loop!!!

That's a LOOOOONG car ride...but that's not the point of my post. The point of telling you how far we drove was to show how amazing it was that Sadie calmed down and actually did really well in PT...after she took a short little power nurse-nap. Even Tami was amazed at her ability to keep it all in check. We started out on her tummy, then rolled over. Soon, it was apparent that Sadie gets bored laying on her back, she wants a new view of the world, a sitting up view. So for the rest of the time they worked on sitting. Sadie did some really great things responding to Tami moving her and "disorganizing" her, forcing her brain to reorganize and stabilize. Then when we left I bonked her head getting into the car and it was all downhill from there.

Then this morning we had OT with Jessica, who I also really like. But the nice thing is that Jessica comes to our house, so we don't have to endure any car screaming at all!! In fact, we haven't gone anywhere today...which means our schedule is slowing down again for a bit, and that's nice because I started this new job and it's a little overwhelming right now!

Anyway, Jessica said a lot of the same things Tami had. It helped that Sadie took a 30 minute snooze right before Jessica got here, but still, she made it the ENTIRE hour with no screaming! And we did a lot of work on her tummy this morning, as well as a lot of sitting. Sadie is really getting much better at sitting. I am really proud of her. I think the biggest thing is that she WANTS to sit, so she tries really hard. But, too, it's hard for her to get her body to do what she wants and I can see her get frustrated. It's sad. I can tell, though, that she's determined, and where there's a will, there's a way. I am confident that someday she'll get it and she'll get it all!

Sadie's new PT

We saw a new PT today, at the recommendation of a friend who also sees her. She. Is. Wonderful. I don't think I could say enough good things about this woman!! My idea of PT has been totally turned around, and I think Sadie is going to show some great progress with Tami.

First of all, Tami operates out of a mobile facility. So, her and her partner rent space in a church parking lot and do PT out of this trailer attached to the back of a truck. I had called them previously to see if they'd come to my home, but they told me they don't come this far south. I did have to drive about a half hour north to get to her, but it was worth it.

One of the first things she said to me was that she thought the evaluation from Bob the PT was a little ridiculous. It said, and I quote, "Sadie did not cooperate with the therapist. She was crying constantly and throwing a tantrum during positional activities. She refused to play with toys and she demonstrated significant sensorty seeking issues which have resulted into behavioral problems." I call B.S. on Bob!! 6-month-old babies DO NOT know how to throw tantrums, and she is not old enough to have "behavioral problems." We also discussed at the end that we both thought Bob's goals for Sadie were vague and unambitious. So, we set some new ones, ones that were more suited toward Sadie's personality, and ones that make more sense for her age-wise.


There are so many things I like about Tami, but my favorite (if I had to pick one) is that she sang to Sadie almost the whole time we were there. Tami understood what babies like, and she respected Sadie's communication to her, she understood when Sadie didn't want to do something as opposed to something hurting her or making her uncomfortable. The first time Sadie started crying, Tami picked her up and started rubbing her feed on things that felt different, like the carpet, the mat, etc. And she said, "feel that with your feet? That's the carpet!" Sadie calmed right down. She felt a new sensation and she was interested in what was going on.


Tami had me take Sadie's dress off so she could see her muscles working in different positions. She had her roll VERY slowly and stop at different points in the roll so that she could see what Sadie's muscles do, and so that Sadie could feel what each position feels like. She was very positive and noted that Sadie is very strong, it's just learning to control her muscles that's going to take some practice. I also mentioned that Sadie can roll, she just doesn't have a reason to since she's not really aware or stuff and doesn't know how to reach for stuff. Tami was pretty impressed with what Sadie can do.


Then we worked on sitting. Sadie did really well with sitting. Actually Tami said she's SO CLOSE to getting it. We just need to work on sitting on her "sit bones" and bending from the hips for balance. She would push on different parts of Sadie's back to kind of show her how it felt to have gravity working different directions. Then she pushed some on Sadie's thighs to help Sadie realize she needed to push those hips into the floor in order to sit.


When Sadie would fuss, Tami would stop singing and make a raspberry noise. Sadie LOVED this noise. She would stop crying every time. I love this picture above. I think it was at this point she realized it was Tami that was making that noise and that she loves her.

Overall it was a very positive experience. Tami has been doing PT with kids for over 20 years, and she knows just about EVERY person we've worked with. She knows our pediatrician, our eye doctor, she has even met Bob the PT. She had a lot of good things to say about Sadie and really feels like she's going to make progress quickly. She also picked up that Sadie is good at communicating and felt like respecting her and what she wants to do was the most important. She also felt like Sadie is very determined (as evidenced by the fact that she's still alive!) and that once she decides it's time to crawl, there will be no stopping her, the same with walking (now if we could just convince her to want to sleep!!). She told me we can promote awareness of those hands by putting pressure on her palms when she's on her tummy, and opening them up and touching EVERYTHING, especially her own body.

I am so glad we've found a good PT and that I'm actually EXCITED to go back! Next time she wants to videotape Sadie so that once we start seeing progress we can compare her to where she used to be. Very cool.

I'll leave you with some more cute pictures from PT.