Sadie's new life goal

I don't know if I've written about it in the past, but I have a short list of life goals for Sadie.  Meaning, these are things I'd like her to achieve at some point in her life.  They are things I know will take years of working on and lots of practice.

One of them is potty training.  I truly believe that with the right communication skills, Sadie can be out of diapers...someday.  We are actually in the process of getting a shower seat/ toilet chair combo.  Once we receive this, I'm going to start toilet "timing" and just like she gets fed on a schedule, I am going to do my best to sit her on the toilet on a schedule.

Another life goal I have for Sadie is to be able to sit independently.  Sitting opens up a new world of possibilities.  And actually I'm hoping this can happen sooner rather than later.  If she can sit, she can take baths.  If she can sit, we can eliminate the car seat and she can use a 5-point harness seat belt (when she's big enough, of course...I know children now stay in car seats like until they're 8 or 9!).  If she can sit, she can sit on the toilet, which takes the previous goal to a whole new level, because then she can potty anywhere and not just at a facility (aka home & school) that has the right equipment to support her on the toilet.

I want Sadie to be able to do a standing transfer.  This means that she can lift herself from a seated position, with the help of another person, or a bar, to another seated position.  So, she'd be able to hold on to me and stand up from her wheelchair and move to sit on the toilet, or the car, or the couch.  Ultimately, I'd like her to be able to take a few steps, but I'd be happy with just a stand and pivot.  This goal keeps me from having to lift her when she weighs so much, and keeps us from having to get a lift in our home...which we might end up with anyway.

And I've just added a new goal.

Yesterday, Sadie had her swallow test.  If you remember, the last one she did didn't go so well.  They told me we shouldn't be feeding her and that she should be primarily tube fed, with maybe 5 bites per meal.  And I was so frustrated and angry, but just kept doing what we've been doing.  And Dr. Wendy told me we don't ever have to do another test again if we didn't want to.  Well, we had to do another test, because insurance told me they needed the test results to justify paying for the thickener.

I over-prepared.  I took the feeding therapist.  I scheduled the test as close as possible to when Sadie normally eats.  I've been feeding her in a similar chair at home that they do for the test.  And I didn't starve her, like they say I should.  And this time she didn't aspirate.  She drank nectar consistency, which is like one of those Naked Juice or Odwalla smoothies.  They not only recommended that we start doing more liquid, they told me to start giving her chunks of stuff to munch, like pieces of banana or avocado.  She is just getting so strong!

So, I've added a new life goal.  I want Sadie to drink from a straw.  I am realistic in that I don't think we'll ever get rid of the tube.  The tube is so convenient to give extra fluids and medicines!!  Sometimes I wish I had a tube...boy did I wish this when I was pregnant! Think of how much it would help with morning sickness and hydration!!  Anyway, I think she'll always have the tube, but if she can control her own drinking through a straw it would be a big step.  I don't know if she'll ever be able to hold a cup to her mouth, so using a straw keeps me (or someone else) from having to pour liquid into her mouth and risking a mess.

I truly think Sadie will be able to do these things.  And probably once we learn some more communication, I'll add a life goal that has to do with communication.  I really think Sadie has the potential to go far, and to live an enjoyable life, and to do great things.  She is an amazing person.

Do you have a special needs child?  What are your life goals for him/her?  Maybe you haven't thought about this before?  Maybe it's time to start... if you don't have something to always be working on, you don't go anywhere.

Our Weekly Schedule

Next week is a huge milestone in our special needs life.  For the first time ever all our therapies will be AT HOME!!!  And, we haven't had OT since December, when we moved, so we'll be starting that again next week, which will be so good for Sadie!

Our old house was in a "black hole" for therapies.  We were lucky that Jessica came to see us for Occupational Therapy, we were the farthest east she came.  And I was told we were lucky we even HAD Physical Therapy since Sadie was so young...but we had to drive to see Tami for that.  Now that we live on the other side of town, people are more available to come to our area...and more willing!

So, I want to give people an idea of what a special needs mom's schedule looks like on a weekly basis.  I know that most stay at home moms consider their job full time, but have you ever wondered what they do all day?  Well, I work part time (from home, thank God), and I take care of Sadie...but I don't clean the house!!  I have to draw the line somewhere, right?

Monday

10:00-11:30 - Sadie and Mommy go swimming

2:00-3:00 - Feeding Therapy

Tuesday

9:30-11:00 - Mommy works (grading)

11:30-12:30 - Physical Therapy

12:30-4:30 - Mommy works

Wednesday

9:00-10:00 - Mommy works (grading)

10:30-11:30 - Occupational Therapy

12:00-4:30 - Mommy works

Thursday

8:00-4:30 Mommy works

but...

10:00-11:00 - Speech Therapy

1:30-2:30 - Physical Therapy

Friday

9:30-11:30 - Foundation for Blind Children Mommy & Me program

10:00-11:00 - Vision Therapy (at home if we don't go to FBC)

12:30-4:30 - Mommy works

Luckily I get Saturday and Sunday off...sorta!!  I still have to feed every 2/2.5 hours, change diapers, and play with Sadie (that's not so bad!!)  But Brian helps out a lot...especially in the evenings and on weekends!

You can see why having therapy come to our home will be such a blessing!  The only place we'll have to go each week is Foundation for Blind Children on Friday mornings...if we want.  But I think it'll be a welcome chance to get out of the house and play with other kids (and moms).

I hope everybody has a blessed week this week!!

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!!

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.

Sadie's feeding therapy

Sadie has been doing feeding therapy/speech therapy for a couple of months now. She's been working on becoming aware of her mouth and how to use it more efficiently. So, I use that Nuk brush with her in the mornings before breakfast, like you saw in the video of her eating. And when the therapist comes she does a lot of the same stuff, but with different tools; like a little vibrator, or a vibrating spoon, or a little sponge. Today for therapy, Nancy asked Sadie to choose if she wanted her to use the Nuk brush or the green sponge. I had no idea how Sadie would react to a choice like that, since she has a really hard time using her arms. She can't reach out and grab her choice. But you'll notice in the video, Sadie gets her right hand going, clearly choosing the sponge (maybe she could see it better, maybe she knew the difference, I don't know), I know this was a deliberate choice because Sadie almost always (90% of the time) tries to reach with her left hand. This made me start thinking about how we treat Sadie. I always say I think she's smarter than we give her credit for. She's trapped in this deficient body, but her mind is ahead of wat she can do physically. Yet, all day everythin she does, she eats, she looks at is dictated for her. I think it's time we start having her make some of her own choices, like in this video. Maybe she will shock us with the choices she makes and we will learn some things we never had any idea about! The video shows therapy with the sponge, then with the Nuk brush, then you'll see Sadie make her choice.

Dear Santa...Love, Sadie

Dear Santa,

I know it's barely March, but I have a special request. I want an ipad. I played with one today during therapy with Nancy and I really liked it. She showed me how if I touch it I can see a bunch of pretty colors, I liked that. It helped me use my vision. Then she showed me all the animals and I got to hear the noises they make. I liked the dog and the kitty, but I especially liked the birds. Nancy showed me a bunch of different birds and I heard how they all sound different. I wanted to touch it so badly and make the animal talk, but no matter how hard I tried I couldn't get my hand to do what I wanted it to. But, I know that if I had my own ipad I'd learn how to do it really quickly.

Nancy told my mom that it can also be a good communication device and we looked at a bunch of pictures of food. When I'm older, I'll be able to eat things like hamburgers and ice cream, and the ipad will help me communicate to my mom what I would like for lunch and dinner. So, you can see that it's not only to help me, but to help her. And my mommy needs all the help she can get with me, she works very hard all day to make me happy. She does a good job.

Santa, I know ipads are expensive, and I'm not sure you have the right technology in your workshop to make them, but I figure if I ask early, you'll have lots of time to save up for one. I promise I'll be a big girl and eat my food and poop everyday like Mommy and Daddy want me to. I'm sure they've already told you how good I am at sleeping in my bed all night. My mommy makes really good cookies and I will make sure she leaves some out for you on Christmas Eve when you visit our house.

Just in case you need any more convincing, here's a video of me playing with Nancy today with her ipad. You can see how much I like it!

Thank you Santa for reading my letter. I look forward to Christmas, even though it is still 9 months away. By then I won't be a baby anymore, and hopefully I'll be able to sit by myself...maybe even crawl! I can't wait to play with my new ipad!

Love, Sadie

Sadie's eating and gaining weight!

At Sadie's 12 month checkup, the doctor told me Sadie's too skinny. She had gone from a little chubbers, to skinny mini in about 6 months. At 6 months, she was just above the 50% in weight. At 9 months she had dropped to 25%, and by 12 months she was at zero. That's not good, doctors don't like to see that, especially in special needs children, ones who are already on the radar for feeding problems. At 9 months, when Sadie started dropping, Dr. Wendy called our state services coordinator and requested that we get the ball rolling on feeding therapy...we didn't actually see the feeding therapist until the week before Sadie's 12 month appointment.

As good as I know they are for babies/kids/people who really struggle or just can't eat, I am deathly afraid of a feeding tube. It would require surgery, and maintenance, and screaming, and it would break my heart a little. So when Dr. Wendy told me to come back in a month to weigh her, and if she hasn't gained she's going to send us to G.I., I freaked out. I know she didn't mean it to be, but to me it was a threat. A challenge not to go down the slippery slope toward G-tube.

It's hard work for Sadie to eat, definitely. And it's hard work, as well as a lesson in patience, for whoever is feeding her. But we tackled the problem head on, and immediately started feeding her 3 meals a day. And soon after that, we started keeping track by writing down what time she ate and what she ate each meal. We saw a pattern develop, she was eating at about the same times everyday. So we tried to stick to it. Then we started weighing her food and trying to get it up over a certain amount everyday. That prompted the addition of a meal, so now she's up to 4 meals a day. Then we moved to counting calories, and now I'm even writing down when she nurses. This might seem like a lot of work, but it's a lot less work than what comes with a G-tube...and she's gained over a pound in the last month.

We have our weigh in appointment on March 8, and I plan on bringing our food log with us. I think Dr. Wendy will be happy that Sadie has gained weight. I mean, she actually has a fat little belly and her face is filling out and when you pick her up, she feels solid. I just really hope that as she grows bigger and bigger her eating skills also improve to fulfill her calorie needs. There still may be a G-tube in our future...but we're going to fight it as hard as we can for as long as we can.
Here's a little video of Sadie having her feeding therapy. It's meant to stimulate and wake up her mouth so that she is more aware of it and can use it more efficiently when eating. It actually works really well. You can see how it makes her yawn when we do it though! What a good little eater she is becoming! We are so proud of her!

ABM/Movement Therapy

Last weekend Sadie did an intensive therapy session with Michelle at Movement Lesson. We've seen Michelle a number of times in the last 6 months or so, but when we asked her she said she's really seen the most progress not when children come weekly, but when they come 8-10 times, twice a day, for 4-5 days. So we scheduled to see her over President's Day weekend. 9:00 and 3:00 Friday-Monday. It was a lot of car riding. Sadie did a good job. It wasn't until our very last session that she had to take a nurse-nap break. When we first started going, Sadie needed this kind of break every session.

I've talked about this kind of therapy before, so I won't get into that. (you can read about it here) But I do want to talk about Sadie's progress through this therapy. Michelle worked a lot on her back. Many things are related to our spine and its curvature and how well it's supported. A lot of Sadie's inability of holding her head up comes with the rolling of her back. It's like she is a little potato bug and when she gets tired or mad she just curls up! Michelle spent a lot of time teaching her how to sit up straight and hold her head up high.

She focused a lot on sitting with Sadie. She worked a lot with her hips, trying to release the tightness there that keeps her from being able to support herself. By about half way through the weekend, Sadie was sitting (supported, of course) cross-legged! She also spent some time making efforts to uncurl Sadie's feet. It's interesting how we take something like sitting for granted, but for Sadie it's so hard because she spends so much time curling up like a potato bug! But sitting is so important. When Sadie can sit, it will open a world of possibilities for us...in the tub, in her high chair, in the stroller, in the grocery cart at the store, even just being on the floor playing with toys! I am really anxious for Sadie to be strong enough to sit.

We have noticed a lot of improvement in Sadie's trunk stability after these 8 sessions with Michelle, and so have Sadie's other therapists. All of them have really felt like she can hold her head up better and for a longer amount of time. Michelle also did this thing with Sadie where she would rock her back on her back, with her feet over her head, then rock her forward and use the momentum to propel her into either sitting or even standing. I had never seen her stand so straight and so tall before this weekend. It was obvious she was learning to use those core muscles to straighten, intead of curl, that spine.

I think though what has improved the most since seeing Michelle for this intensive therapy session, is Sadie's vision. Weird, right? It's supposed to be movement therapy. But it's neurological, which is the root of her visual impairment, so it effects and improves this area too. Sadie's vision has been "on" more and more during the day. She seems to be tracking objects better when in front of her face, and she is able to fix on something for a longer period of time. She seems to also be better at using her vision and doing something else at the same time. Because her brain function is limited, it's hard for Sadie to do two things at once...like scream and hold her head up, or use her vision and swallow her food, etc. However, she's been using that vision this week while on her tummy holding her head up, in sitting position, while eating, while nursing, and in the car.

Here's a video of what Sadie looks like when she's using her vision. You'll notice she's trying really hard to focus on me, you can tell by the flutter of her eyelids. She is so concerned with trying to see me she can't even pause to give me a smile...usually once she focuses on me, she will grin from ear to ear.



And finally, after seeing Michelle for these 4 days last weekend, we've noticed a change in Sadie's attitude. I don't know if it's part of the neurological maturity process, or if she's gained more confidence in herself, but she has learned to keep it together. Some might call this self-soothing, we call it not losing control. Sadie gets upset, frustrated, overstimulated, etc. and she cries...because this is how babies communicate. In the past, if whatever the issue is isn't resolved in a matter of seconds, it will turn into inconsolable screaming. Insert car screaming here. But just this week, we have noticed that Sadie can get over it on her own without losing control, and we love this new development...mostly because it may lead to the end of car screaming, but also because we are seeing our little helpless screamy baby turn into a child who is realizing that she can communicate with us.

Update on Movement Therapy

Sadie has been going to Movement Therapy every week through the month of December, and starting back up now that we're back from our holiday break. We really like Michelle.

Today Michelle's partner, Diane, was there also. Diane is a vision specialist and worked for The Foundation for Blind Children for many years. Diane has really noticed a change (for the better) in Sadie's vision and works a lot with her when she's there. However, today, Sadie was tired, I suspect her mouth hurt, and all this resulted in BIG grumpy pants!

We stood Sadie up for a while and worked with her vertical instead of horizontal, that seemed to make her happy for a little while. She even played with one of Michelle's fun toys that if you push buttons they make noise, play songs, and light up (I really want to get Sadie something like this).


Then we took a nap break. When Sadie woke up (after about 15 minutes) I showed Diane and Michelle our trick.

When Sadie first wakes up she will lay on her tummy and lift her head, turn it from side to side, look at stuff, even push with her arms, and sometimes roll herself onto her back when she's done. But we can ONLY do this when she first wakes up, so often this is what I do with her when I am making her some food (because she usually eats as soon as she wakes up too!). Both women were really impressed with this.

While we were there I asked if it's more beneficial for Sadie to come weekly like we have been, or to do an "intensive" session every couple of months. An intensive is like 2 appts a day for 4 or 5 days in a row. Michelle said now that she's seen both with another client, she sees MUCH more improvement in a shorter amount of time with he intensive schedule. So, we won't see Michelle until President's Day weekend. We will see her at 9am and 3pm Friday-Monday.

If you are interested in knowing more about Michelle and her business, you can visit her website here. Movement Lesson

UPDATE THE NEXT DAY: Last night I had a dream that Sadie started pushing herself into crawling position after seeing Michelle for an intensive. Maybe this dream is just an indication of what's in my heart.

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!

Update on ABM Therapy

Sadie has been to ABM (movement) therapy 5 times now, and she is a completely different baby! I want to share how she's changed in just the last week and a half:

1. Her vision has improved. She can see. I mean, she could see before, but now she LOOKS at things. ANd her eyes focus together. And the fluttering eyelids is lessening. She fixes her attention on objects and really looks at them. Last night we visited Grandpa and he hasn't seen her since we started this therapy. He just kept saying, "look at her eyes! They look great! They look normal! You can tell she can see things better!"

2. No car screaming. Let me say that again in case it didn't sink in: NO. CAR. SCREAMING!!! Somehow, magically, Sadie is now perfectly okay with the car. All my dreams are coming true!!


3. Sadie sleeps at night...in her own bed. And when she doesn't sleep, I just don't care anymore, I'm not going to stay up with her. She's learning to put herself to sleep, so I just turn over and ignore her and she goes back to sleep. If she wants to nurse, she'll let me know. This has allowed me to get MORE than 5 hours of sleep a night and boy, do I feel good!! Oh, and this week she also took a 2 hour nap in her crib by herself.

4. She's becoming aware of her body. Sadie has started kicking her legs, pulling her knees to her chest when she's laying on her back. She's started using her hands more by batting at things. She's still pretty uncoordinated, but I see her trying to bring her hands to her mouth. Her hips are loose and range of motion is returning. She can also roll over. But she doesn't. But I've seen her do it more than once, so I know she can. I feel like once she really gets the hang of using those hands she'll have more motivation to roll over. Also, she can sit more independently for longer periods of time.


5. We're seeing more personality. Last night my brother was in Phoenix to do a show and I took Sadie to meet up with him before he had to go on stage. We were just sitting in the car, but she was smiling and happy and showing off for her uncle. Then we also met up with Grandpa and it was the same thing for him. She has turned into a happy, smiley baby instead of a screamy baby who needs to bounce and nurse all day.

All this after only 5 sessions!! We will have 3 or 4 more next week before we take a break and see what Sadie can do. All of the sudden crawling by Christmas doesn't seem too unreasonable of a goal!!

If you are interested in Movement Therapy for your sick or disabled child, yourself, or anybody you know (even those who are perfectly well!) you can visit Michelle's website here, or here. You can also find amazing videos of her work on youtube (you can even see Sadie!). And even if you don't live in Phoenix it's okay, she will FIND a way to help you!! I strongly encourage you to check her out!

The Wellness Center

A while back my dad forwarded me an email from a friend of his who is a chiropractor and really into homeopathic/naturopathic medicine. Among other things, he mentioned that we should find a "Brimhall" chiropractor. I didn't know what this meant, so I googled it (like any curious person of my generation would do) and found out that Dr. Brimhall is a chiropractor who does all sorts of crazy stuff like aura cleansing and chi rebalancing, as well as your basic chiropractic stuff. He travels around and certifies other chiropractors in his methods around the country. But then I learned that his son, who is following in his footsteps, has a wellness center and practices right here, in Mesa. Well, that's exciting!!

So, last week we scheduled an appointment to go see Dr. Brimhall (Jr.) and found some successes. Before my appointment, I filled out all the paperwork online so he knew what the deal was when we got there. We talked a little more about Sadie's birth and what has happened since. I told him we're seizure free, but that we're now on a muscle relaxer for her tightness. I told him how we're worried about her head growth and that she's WAY behind in her development. I told him how she doesn't sleep and she screams in the car and that I'd really like his help in developing her sensory system so that we can overcome these things. And secondly, I like him to address her tone (muscle tightness) in hopes that we don't have to be on that medicine long term. It was a lot, but he's a professional, he has kids, this isn't his first patient with CP, oh...and he's a SUPER nice guy!

The first thing he did was take this laser and point it on the back of her head (where it's not growing), this is to promote cell and tissue growth way deep in her brain. Then he took this vibrator thing and vibrated all over Sadie's body (I think it's called a percussor), it really loosened her up and relaxed her muscles. It also made her more active. He mentioned that it might make her really tired because it was stimulating her nervous system, I HOPED she'd be tired, because at that point, it'd been a week and a half since she'd taken a nap (without drugs)!! Then he stuck his hand in her mouth, while the other hand was at the base of her neck. When I asked him what he was doing, he said there's a pressure point on the roof of your mouth that opens the bones in your skull and allows the cranium to be receptive to stimulation. Cool huh? When he was done, we talked about making sure I was taking Omega 3 supplements because she really needs that fatty acid to help her brain heal and grow. We scheduled an appointment for a week later and we went on our way.

I'll admit I was initially a little disappointed when Sadie immediately started screaming in the car again. For some reason I had this magical idea that we'd see this guy and he'd make all my dreams come true...which all have to do with eliminating car screaming! But we only went as far as Tanis's house (which was like 3 miles), so it was okay. And when we got there Sadie TOOK A NAP!!! And when we got home, SHE TOOK ANOTHER NAP!!! It was unbelievable.

Dr. Brimhall mentioned that we'd probably see immediate results because she's a baby, but that they'd wear off. So, I figured after a couple days his magic powers had worn off and didn't really think anything of it. We had a good week this week: Sadie slept 6-8 hours at a time, twice in her own bed. Sadie started batting at her toys hanging from the toy bar a lot more. She's been slowly losing that ATNR reflex. And she's been napping. We went to California this weekend and Sadie did really well (LOVED that king size bed, by the way)...but Sunday afternoon it all started going down hill. And Monday she didn't nap and had a hard time going to sleep. But Tuesday (today) we went to see Dr. Brimhall again.

Sadie was a little more disagreeable this time when we saw him, but it's okay, because what he does tends to calm her down some. We talked and I told him about how she's been batting at toys and even grabbed one from Brian once and he got SO EXCITED. He was like, "that's HUGE!" I didn't really think about it being a result of what he had done to her, but he did. And he said he noticed she was tracking him more with her eyes today, that she was turning to the sound of his voice. And he mentioned that when the brain starts healing/developing, eyesight is the first thing you'll see improve. He said that last week he was worried because she didn't seem to have any reaction to him, but that today he could really see improvement and that gave him a lot of hope. He told me that he can't say HOW much she'll improve as a result of treatments, but that he's sure it'll be significant...even if slow.

I also told him how I felt like it all went south about Sunday afternoon. So, we agreed that we have about a 4-5 day window. He said ideally he'd like to re-treat her within that window of opportunity, not giving it time to wear completely off. So, we're going to go see him twice a week for the next 4 weeks. Hopefully by then she can go longer and we can spread it out to an entire week before our next visit. He told me he's going to focus on her sensory processing system first and try to get her sleeping longer and in more normal patterns, and with that the car screaming should mellow out as her system regulates. I told him I want the car screaming to stop more than I've ever wanted ANYTHING in my entire life. He said if we don't see pretty immediate results we'll do some electrical stimulation to try to tone down that sensitivity and help regulate her sleeping patterns so she'll nap and stuff. Then secondly we'll work on tone and try to get her to relax, but one thing I've noticed that helps a lot with her tightness is when she's well rested, she relaxes, and then she's not so tight. He also said to keep an eye on her head size, because as we continue treatments, we will see her brain grow and her head will grow as a result. (I have this wonderful fantasy of going to see Dr. Wendy one time and measuring her head to find that it's in the 25th percentile and us doing the dance of joy together...because she's THAT awesome of a pediatrician)

Sadie is going to see an orthopedist next week because her left hip is somewhat concerning. Because she keeps her legs so tight and close together, her hip socket isn't developing properly and she's losing range of motion. They want to inject the inside of her hip with some medicine that will interrupt the communication of the tendon with the muscle and allow that muscle to relax and keep her from pulling her him in so often. This is something that would last for 4-6 months and would hopefully give her hip some time to develop correctly. The next option is surgery, which is scary and sad and I hope this doesn't effect her ability to walk. So, I asked Dr. Brimhall about this situation and if he could help. He said to go ahead and see the orthopedist and get the process going, because reality is that she MAY need surgery eventually. But he was a little more hesitant about the injection and asked me to wait on that to see if we could loosen her up naturally before we resorted to that. We'll see.

So, today as we were leaving the wellness center, Sadie again screamed in the car (still no magic insta-cure for this), but again, we were only going as far as Tanis's (since she lives so close, and we're already 40 minutes from home, we're going to go visit her everytime we see Dr. Brimhall). Only, this time, she didn't sleep. Not until we got home 3 hours later. Now, mind you, she hasn't taken a nap since Sunday. And when Sadie naps it's nursing and in my arms for 45-90 minutes. I can't set her down. Today she bounced to sleep, then when I picked her up, she fell back asleep in my arms without nursing. Then I was able to lay her in her crib. And overall she slept for 2 hours!! This is somewhat of a miracle. I have ONLY been able to actually lay her in her crib for a nap when she's on drugs that make her sleep.

I'll give Dr. Brimhall another 4 weeks (which isn't cheap since they don't take insurance!) and see what kind of miracles he can work with his magic laser and his "human jackhammer". Who knows, maybe we'll have a completely different baby in 4 weeks, maybe we won't. I'm willing to try anything...especially if it doesn't involve drugs.

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.

Sadie's first OT

After our experience with PT on Tuesday, I didn't really know what to expect with OT. But we already had some positive things: 1. I'd met our OT before and knew she liked Sadie, 2. She was coming to our home, so we'd be in a comfortable environment and no car screaming, and 3. She's a woman. Call me sexist, but I just think women are more naturally gentle and sensitive to babies, maybe it's hormonal...

Sadie had an okay night last night, but she woke up way too early, and I got her to go to sleep for another hour or so, but still, she was going to be ready for a nap, right in the middle of therapy. Then I realized why she was awake...there was poop ALL OVER the bed!! (that's a new place we haven't had poop yet!) So, I got her up, cleaned her off, stripped the bed, started the laundry, put some clothes on her (and me) and just as I was starting to eat my breakfast the doorbell rang! It was okay, though, because Sadie was in a good mood, and that's what mattered. This is Jessica, she is out Occupational Therapist (and she reminds me a lot of Bethany Jennings, don't you think?)




Jessica brought this orange foam wedge with her, and the first thing we did was use it for tummy time. You can see here that Sadie wasn't in the mood to lift her head up. Brian got her to do it, but I didn't get the picture because the camera battery died and I was switching it. One thing we've noticed is that when Sadie is mad or not feeling well, she can't be made to lift her head, even when she's being held. That PT we visited Tuesday, he said that when she has such a powerful emotion it takes over in her brain and her motor skills shut down. So, it's not that she won't lift her head, it's more like she forgets she knows how. Anyway, she doesn't look too upset here, so I don't know what her problem was!



When Jessica came to do the eval, we talked about how Sadie really likes the bouncy chair. Today she asked about that and she taught me a new word: vestibular. (another thing I like about Jessica is that she didn't assume that I didn't know what vestibular meant, because she understood that I know a lot about my child.) Your vestibular system is related to your inner ear and mainly effects your balance and spatial orientation. You can read more about it here. The immaturity of Sadie's vestibular system could be why she likes the bouncy chair so much, it resets her with the rhythmic, organizational movement, and she perceives order through that and is able to calm down. But our concern is that she's about outgrown the bouncy chair, and once she can sit unassisted, it will no longer be safe for her to sit there, so what do we do then? She showed us how we can make a blanket like a hammock and swing her back and forth, which stimulates and resets that vestibular system. Granted, it's a lot more work, and it takes two people, but it might be all we've got until she can regulate herself.


One of Sadie's big goals is to be aware of and use her hands. So, Jessica put this ring on Sadie's arm to try to get her to recognize something is there and bring her arms together in an effort to remove that ring. Of course, Sadie can't do that yet, but she did move her arm across her body as if she was trying to get that ring off. She seemed to be aware of it, so that's good. This is definitely something we can practice more. She even showed us how if we lay Sadie on her side it encourages bringing those hands together and that will help.

One thing she said was that Sadie seems to still be stuck in many of her newborn reflexes, so positioning her body and repeating motions (like reaching out to touch something, rolling, sitting up, etc.) will teach her brain to USE her muscles, not just succumb to reflexes. I bet you didn't realize all this reorganization and brain-training happens in your child, because most children's brains learn to do this stuff with minimal assistance. My child, however, is going to need a lot of help with these things, but I'm confident she'll get them eventually!



She also worked on loosening up Sadie's legs. She is very tense all the time, so we tried to put her on her hands and knees, with legs bent (crawling position). She didn't last long...but we did more after Jessica left and Sadie took a little nap.



















She worked on sitting with Sadie, which we do a lot of. Sadie is very close to doing this on her own, and I bet in another couple of weeks she'll get it. It's a hip-relaxing thing that's holding her back. Because of Sadie's high tone, she can't (won't?) turn her hips/knees out, which she needs to do to sit.

Jessica also came bearing gifts. She gave us this new toy that vibrates. It's supposed to vibrate as a reaction to a baby biting it. But I guess having the vibration in the mouth helps with that oral aversion. Sadie, of course, being how she is about things in her mouth (which is precisely why we need this toy), didn't bite down hard enough to make it vibrate. So, Jessica had to squeeze it and put it in Sadie's mouth. I think she kind of liked it!


Overall, it was pretty low-key. Definitely no screaming, working with Sadie at her own pace instead of forcing her, and lots of letting her adjust to new things. I'm looking forward to having OT again, I think Sadie will really start making progress quickly now!


P.S. I talked to our therapies coordinator from the State and she said I should definitely not go back to that PT! But the good news is that he did the eval so we can take that eval wherever we decide to go and start therapies. We don't have to start all over from the beginning. We're on a bunch of waiting lists, so hopefully someone will call soon!

Sadie's first PT

We went to PT for the first time yesterday and it was horrible. Seriously, I cried all the way home...so did Sadie.

My first clue should have been the way they talked to me on the phone when I first called, but they were the ONLY ones out of pages and pages of agencies who would even take a new client. And we had to drive to them, which isn't ideal, I'd rather have them come to us...but that's damn near impossible with PT. So, I was desperate and willing to give them a try.

When we got there, we were 15 minutes early. I didn't know how long exactly it would take to get there, and I figured we'd have some paperwork to fill out. Sadie was coming off a not-so-good night's sleep. She had woken up at 2:30 and not gone back to sleep until 7:45. She slept until the last minute when I woke her up and strapped her into the car seat. So, she didn't scream the way there because she was still in wake up mode. But she was still really tired.

I filled out the paperwork, and then we still sat there for another 20 minutes. Our appt was at 10, nobody called us back until 10:20. As I sat there I examined all the certificates on the wall in the lobby. There were at least 8 different ones, from 2 different countries. Apparently, the PT who runs the place is Nigerian. And so were his staff, all of them. He was well qualified with 2 Bachelor degrees and a Masters in PT, as well as memberships to different PT associations and things. I thought to myself, "don't be so quick to judge, Christie, maybe this guy is a treasure hidden in the ghetto." Nope.

Next red flag should have been witnessing how they talk to the other kids that were there. I truly think it's cultural, because they all did it. The lady would come out to the lobby and almost criticize the kids who she was calling back. And I heard Bob, the PT, working with a kid who seemed to NOT be doing what he wanted so he'd yell, "NO!" at him. I sat there thinking, "I hope he doesn't yell at my kid like that!" Nope.

It was finally our turn, and we went to a back room and then Bob walked away. He was gone long enough for me to put Sadie on the floor, change her diaper, clean myself up, and even play with her a little. Then he came back and we talked. I told him all about Sadie's birth and how the damage happened, and he asked me questions about what she's able to do now, what she likes and doesn't like, how she reacts to certain things, and even showed me what her body language right then told us about what's going on with her. He was VERY smart. But then he started telling me there's no reason to do an MRI at 6 mos because they won't really be able to see what's going on until she's 2 or 3. Fine, Mr., but it's not like I am requesting the MRI, a neurologist recommended it. He went so far as to tell me we SHOULDN'T do an MRI until she's 1. I told him they probably wanted to compare it to the one at birth. He explained to me different kinds of tone in the body (I already knew this) as if this was the first time I've ever heard of these things, then showed me that she has high tone in all 4 of her limbs. We also talked about her hyper sensitivity to certain stimuli and he told me that the Developmental Psychologist SHOULDN'T have been the person to tell me this, it should have been an OT (being careful to explain to me what an OT is...as if I didn't know). Then he argued with me about it. Sorry Mr., it's already been done, I don't know what you want me to do about it now!

So, then he got down on the floor with her and went "HEY!" in her face. Maybe he was trying to get her attention or something, but that just seemed like a pretty harsh way to do it...I can think of better ways. Then he picked her up and put her on her tummy, she immediately started screaming. He stuck her arms out like a starfish and wondered why she didn't lift her head. It's hard for me to lift my head like that too! Then I got the lecture about the crying. I told him we really work on having a no-cry household (which is TOUGH) because we feel like she has enough stress and we really want to try to meet all her needs so she has no reason to cry. Plus when she starts, it's sometimes hard to get her to stop, so we try not to let it start. He told me that when I respond to every cry I'm letting her manipulate me. I protested and said, "she's ONLY 6 mos old! All she can do is cry to let me know something's wrong or that she needs something!" I understand that doing tummy time and some of these exercises will make her cry, and that's okay to a degree, but I also know different cries, and which ones are just mad because I'm making her do something she doesn't like, and which ones really need me because something hurts.

When he started putting her on the floor, forcing her legs to bend when she was holding them straight, she was crying like it hurt. He wanted to show me some positions to work on at home, but she fought him and SCREAMED and cried like she was in pain. At one point I told him, "she's HURTING, please stop." He told me she's not hurting, but that it's her brain protesting to using different muscle fibers in ways she's not used to and it's making her cry. Fine, but then when you're done, please at least hold her and tell her good job and that everything's going to be okay and that we're doing this to help her. Instead, he cradled her and SHOOK her (as opposed to the bouncing we do with her which is a little more gentle), then went, "ayayayayay!" IN HER EAR!! And clapped all loud in her face. No wonder she kept screaming at him. Poor baby.

I asked some other HIE moms and they say PT is hard and sometimes they cry DURING PT... instead of waiting til they get in the car like I did! And now that I write it out it doesn't seem that bad. But all I kept thinking as we walked away from that place was that I needed to save my baby from that bad man. It may not seem so bad written out, but my gut is telling me to not go back. I called the pediatrician and she said she'd see if she could get Sadie into PT at the children's hospital. We'd have to pay copays, it wouldn't be covered by the state, but we're on a bunch of waiting lists, maybe it would just be temporary, or we could double up...or maybe we'll find a PT that we love. I hope so.

Developmental Special Instruction

As I understand it, Developmental Special Instruction (DSI) therapy is to help Sadie operate and function at her optimal level in her environment. Because of her sensitivity to sensory input, I imagine this therapy will help with regulating herself and knowing when to stop crying if she's tired, if the pain is gone, or if whatever is bothering her has stopped. Really though...I have no idea what this therapy is. So, I went to my trusty friend, the internet, to see if I could find out more about it!

This is how Arizona defines DSI:
• designing learning environments and activities that promote the child's acquisition
of skills in a variety of developmental areas;
• curriculum planning, including the planned interaction of personnel, materials, and
time and space that leads to achieving the outcomes in the child's IFSP;
• providing information, skills, and support to families, related to enhancing skill
development by the child; and
• working with the child to enhance the child's development.

So, I was right. DSI is supposed to help us perform and function as a family, with specialized help for Sadie so that her development stays on track ie. sleeping well, getting enough play/floor time, self-soothing techniques, etc.

We met our DSI therapist last week, Claudia, she came by and filled out some forms, talked about Sadie's goals, and gave me a lecture about punctuality and responsibility or I will be booted from the program (she obviously has NO IDEA who she's talking too!) She agreed to let me take pictures and laughed when I told her we're blogging Sadie's progress for the world to see (again...NOOOOO idea!). She explained to me that DSI is basically play therapy and that we'll be doing a lot of tummy time and floor play and things. Great! But her job is also to support Sadie's other therapies and to help Sadie reach her goals.

She also helped me read our Individual Family Service Plan (IFSP), which is actually very similar to an IEP, for those of you in education, which I've seen about a million of. So, these are Sadie's goals over the next 6 months, so basically we want her doing all these things by Christmas.

1. Sadie will be able to take a bottle or sippie cup so parents can go out together. This will look like: Sadie will not choke or cough while feeding, she will take a pacifier to help calm down, or suck her thumb. (I think the goal here is to make her less dependent on ME and to give me a break!)

2. Sadie will be able to play with toys during playtime. This will look like: Sadie will hold a toy, shake and move it, look at the toy, and pass it from one hand to the other. Sadie will reach purposefully to get a toy and be able to let go of the toy to give to someone else. She will also not keep her hands in fists so often so she can use them to play with toys.

3. Sadie will roll during playtime. This will look like: Sadie will roll from her tummy to back, back to tummy, and roll to a toy or object she finds interesting.

4. Sadie will sit independently to play. This will look like: Sadie will sit independently and hold toys, she will have excellent head control and be able to turn and look in both directions.

5. Sadie will be able to put herself to sleep during naps. This will look like: Sadie will be able to sleep in her crib to take a nap and will go to sleep independently. (this one might be tough!)

Today, Sadie had her first DSI therapy with Claudia. It went pretty well. I don't know how helpful this therapy is because it seems like the same stuff I do at home with her. But, maybe as she progresses it'll get better. And also, it forces us to do it! So, here are some pictures and explanations of Sadie's DSI with Claudia:

First she got Sadie to hold on to a link.
Then because Sadie has a death grip/fist, Claudia was able to pull the link and Sadie would start to roll over.

She would pull her all the way over until she was on her tummy. Sadie DID NOT like this one bit!!

She also did a lot of trying to get Sadie to grab, reach out for, bat, feel toys. Since the dog is Sadie's favorite, we used that one mostly. She started to do it once we got her calmed down after all the tummy time! (we used Brian's trick and gave her a big "YAY!!!" when she did what we wanted)

Then we practiced some sitting.

Sadie wasn't having this at all! haha Poor baby!

Then we did some tummy time on the yoga ball, because she can't push herself and Claudia said it would help with the relaxing her legs. Sadie did okay with this, she screamed and drooled quite a bit, but I'll spare you those pictures and just post the pleasant ones!

Sadie is doing such a good job here!!


So, that's pretty much how it went. It was hard work, but Sadie did a good job. I will continue to work with Sadie on the same things Claudia did. And I'm even going to try to do it roughly the same time of day, just to keep with our schedule. I showed her what Sadie does with a pacifier and how she'll suck on it a little if I squeeze her cheeks, she encouraged me to keep doing that. She also said to try using the nipple of the bottle as a pacifier to get her used to that for bottle feeding. Sadie will sort of suck on the bottle with some manipulation, but it comes out too fast for her or something because she gags and coughs on it. She doesn't really know how to control the flow of the milk in a bottle. We also talked about the bouncy seat vs. the swing. She said keep putting her in the swing for 10-15 minutes a day and let her cry a little if she needs to while I'm close and she can see or hear me. Maybe this will let her get used to it and we can use it more...after all, once she can sit unassisted she isn't really safe in the bouncer anymore. :(

The STATE of things...

When we brought Sadie home, she was on hospice care because nobody thought she'd make it through the week. Her brain was mush, her kidneys (and liver?) weren't working properly, she couldn't suck or swallow, in fact we were told if we chose not to feed her that was okay. I still remember the nurse who came over that first day to do paperwork with us. She told us that what happens in cases like ours is that often the baby will aspirate liquid somehow and end up getting pneumonia. Then probably the pneumonia will continue to haunt Sadie's lungs and she'll end up dying of that. It was a pretty grim time...yet, to us at that point, it sounded good!

Obviously Sadie exceeded everyone's expectations and was "graduated" from hospice on April 2. We were then referred to, I believe, 2 state-run organizations: AZEIP and DDD. This is where it gets confusing...

Arizona Early Intervention Program (AZEIP) is who we saw first. A girl named Kara, who looked like she was 22 years old, came over and asked me a bunch of questions about Sadie. This happened on April 14. She wanted to hear Sadie's story (which gave her chills and made her get a little teary-eyed), asked me what my goals are for Sadie, what my concerns are, and had me sign a bunch of release forms so that they could access doctor's records. I also gave Kara a letter from Dr. Wendy (our pediatrician) stating that Sadie has been diagnosed with a seizure disorder and is currently taking medicine for these seizures. The reason I gave Kara this letter is because, having seizures makes Sadie automatically eligible for DDD (Division of Developmental Disabilities). What?! I know. I'll explain in a minute.

The next week, a lady named Lloydchell (yeah, I asked her to spell that for me!) came over and asked us a bunch more questions about Sadie's development. This was April 19. She was evaluating if Sadie has significant delays, or if she's right on. To be eligible for AZEIP you have to be significantly behind in developmental milestones in order to qualify. And if you do qualify, you're eligible to receive state-funded services for physical therapy, occupational therapy, speech, etc. Lloydchell said that the speech-pathologist needed to come out and also evaluate Sadie before they could make a final decision, but that according to her observations, Sadie was not delayed enough to be eligible. This is also what Dr. Wendy thought. But remember, Sadie has seizures, so she's automatically eligible for DDD. I promise, I'll explain what that means.

Jenny, the speech-pathologist came over April 29. She was a great lady, and actually had had a baby the same week Sadie was born! She found the same thing as Lloydchell, and told us again that Sadie would probably not be eligible for AZEIP's services. But it was encouraging to hear her compare Sadie to her own baby and talk about what her baby is and is not doing yet. It sounded like Sadie's pretty normal about all things speech...well, at 3 months old at least. I posed the question to Jenny that many of you are asking, "So, if Sadie isn't eligible for AZEIP, then what do her seizures make her eligible for?" Up until this point I was under the impression that AZEIP and DDD were the same, just AZEIP focused on kids 0-3 years old. Wrong. AZEIP and DDD are different, but every kid under 3 has to be evaluated by AZEIP before they can even get to DDD. Even though we have a letter stating that Sadie has seizures, AZEIP had to waste a bunch of time evaluation her development only to find that she's not delayed enough to qualify for services, which doesn't matter anyway because all along she's been eligible due to the seizures! And if you're keeping track, you'll realize that at this point it's been 2 weeks since we've seen Kara and 4 since we were exited from hospice.

So what happens now that we've seen Lloydchell and Jenny and been told by both of them (and Dr. Wendy, don't forget) that Sadie's development isn't delayed enough to qualify for services? They have to write up a report, give their findings to Kara, who then has to hand over the case to DDD...since Sadie is automatically eligible for their program. Why couldn't this just be done in the beginning? I don't know...seems like a waste of time doesn't it?

I called Kara when we returned from Oregon on May 17 (over a month from when she first came out). We had received a letter in the mail from Kara while we were gone telling us that "Lauren" didn't qualify for services from them, but because of her seizures, would be eligible through DDD. (I think Kara forgot to proofread her form letter...maybe she had a bunch to send out that day.) Kara told me that she had given everything to DDD that day and that we should be hearing from them by the end of the NEXT week (which was this last week that just ended). I didn't want to wait anymore, but it seems that this is how the wheel turns when dealing with the state, very very slowly. Meanwhile, Sadie has missed out on 6 week's worth of therapies she probably could have benefitted from.

I spoke with Kara Wednesday, she told me she had talked to our DDD coordinator that day (her name is Annie), and that we should hear from Lloydchell and/or Annie no later than Monday to schedule a time to come out. See, that's what's cool about hospice/AZEIP/DDD, they come to your home. We are also going to see a psychologist at PCH (Phoenix Children's Hospital) who will probably give us therapies through the hospital, but we have to GO to the hospital to do that...and you know how Sadie feels about the car! The next day Lloydchell called me!! I was thrilled. I really feel like these ladies want what's best for my child and my family, but their hands are tied by this bureaucracy of state-run programs. They understood that I'd been waiting a long time to get started with a program that I'd been told from the beginning my daughter was automatically eligible for, and they got the ball rolling as soon as they could do anything about it.

We're meeting with Lloydchell and Annie (the DDD coordinator, who apparently is our golden ticket in this program), June 3. I am really excited, let's get Sadie in some state-funded therapies (this means not having to deal with insurance companies!) and let's get her rolling, grabbing, and learning to suck on a bottle. And let's do it all in the comfort of my own home!

Stay tuned for more updates on Sadie's therapies and how DDD is working out for us.