Therapressure Protocol and New Therapies

As we are getting settled in our new home, Grayson and Marloe have had several initial doctor and therapists appointments. Marloe loves our new pediatrician. This is especially true because she did not have to get shots this time at her 3 year well visit. We even had to go back a week later to have the doctor examine a suspicious bug bite and Marloe wasn't the least bit stressed about the impromptu trip like she has been in the past. The bite turned out to be nothing but a local reaction that steroid cream could easily fix.

We actually requested this doctor as a result of suggestions from the local Down Syndrome Family Alliance. I asked for some specialist and doctor suggestions on their Facebook page before moving. Dr. Butcher's name came up several times in the responses. She is also one of the board members of the alliance. When we called to make an appointment, they told me she was not taking new patients. I explained our situation and why we wanted her to be our child's doctor. They called me back the next day to tell me Dr. Butcher was happy to take my children on since I had made a special request. Now we couldn't be happier.

We have also had various intake appointments for the early intervention program and OT and PT evaluations. The speech evaluation isn't until August. We are also waiting for our meeting with the service provider for our Individual Family Service Plan (IFSP). Every family gets that is enrolled in the state's early intervention program has a plan developed for them and their child. We had one in Georgia also. Luckily, Grayson was able to get started on OT right away. We are still waiting on a PT appointment.

After speaking with us about Grayson's quick to get frustrated temperament and the fact that it can take two people to get him diapered and dressed, she offered us some home therapy solutions. It is called Therapressure Therapy and is only effective with individuals diagnosed with sensory defensiveness. Grayson has a touch of this, which is why we think he gets so hard to handle when it is time to change his diaper or clothes. The laying down and actual change to his body is the trigger.

So we take these brushes:

And we hold the "device" in a horizontal direction, apply firm even strokes with pressure enough to flatten the bristles on the arms, hands, back, legs, and feet. Next we perform joint compression, ten times each, to every joint. Here is a video of the process:

Now, our wonderful OT, Sarah has very high expectations for Mommy, Daddy, and Grayson (as said in the video and by the way my husband has a dirty mind..hee..hee). She wants us to do this at home therapy for up to two hours a day and no less than an hour and a half a day. We have to continue this every day for three weeks. So I have been "brushing" my child and compressing joints every second I can spare.  I have yet to reach even an hour of brushing time. Grayson is starting to run (i.e. crawl really fast) from us whenever he sees the brushes in our hands. Folks, it has only been two days since we started this.

Now don't get me wrong. I am open to the possibilities of this therapy. Sarah claims that we will see results in Grayson's level of frustration as well as a decline in the difficulty of getting him dressed. I just am not sure how effective the therapy will be if I cannot even reach the goal of brushing time each day. Drew and I might need to huddle up with a new game plan for this Therapressure Therapy. Sarah stated that we would see an increase is crankiness before we saw improvement. With my teaching experience, I find this is usually true when children are introduced to something new be it routine, concepts, skills, or therapies.

So I get it. I just need an idea of how I am going to accomplish this task. We will get there. Even if Grayson only gets 30 to 45 minutes of brushing and compression, at least he is getting it. I will let you know in the next couple weeks how the therapy has paid off. We can do anything for 3 weeks!

Here are some pics from Aunt Nikki and Uncle Chris' wedding two weeks ago.

Grayson was the dapper ring bearer.

 Marloe was the outspoken flower girl.

She yelled at the end of the aisle, "We are not done throwing our flowers!" and "This is a wedding party. Where is my wedding cake!" Grayson just sat in the wagon, eating a cracker, and looking like the stud that he is.

Happy Fourth!

Happy Fourth of July

Happy Fourth of July to your family! 

~from the Toneys~

THE MOVE!!... and Beach Trip

Woah! That's all I can say about our move. Let me say it again...Woah! We got back from the beach last Friday. Instead of going back to our old house, we went ahead up to my mom's place (which is now ours also, so I need to get out of the habit of calling it my mom's).

The upstairs part of the house was cleared out of my mom's stuff on Monday. Also on Monday, Drew, his dad, and his uncle went back to our old house. They loaded it up just in time before a pretty bad storm hit. Then they came back up on Tuesday. Meanwhile I am working to keep the rugrats out of the way. We had been talking to Marloe about moving and the changes that would come. She pretty much understood and didn't react bad to the change. Wee Pie, on the other hand, was quite bad off the second day we arrived to my mom's our new house.
Whiny...check; Messy...check; Trouble...check; Biting...check; Hitting...check; Into every possible thing he shouldn't be into...check; Tearing up everything he got into...check; Lamp pulled on head with goose egg knot...check; Naptime didn't help...check; Daddy stepped in poop...check. I think that pretty much sums it up about that.

After two days of trying to put the house in order while keeping kids entertained, we bit the bullet and put the kids into their new daycare early. We were going to wait till July so they could get settled before they had another change thrown at them. Sometimes accepting that you can't be a super, unpacking, organizing, do-it-all-while-the-kids-are-chomping-at-your-heels (litterally with Grayson Goo) mom is just as super. Drew and I were able to get a lot accomplished on Thursday. The kids loved daycare so my worries were just worries. The daycare center put Grayson in with his age peers instead of the infant class he was in at his last daycare. I am really happy he will have peer models. The only hiccup was Marloe not eating her lunch, but in return she scarfed down her dinner.

Friday we closed on our house after thinking it would be at 10:00, then thinking it wouldn't happen at all that day, and finally having a two hour closing at 1:00. This was complete with Drew's name being wrong on a couple documents that had to be changed. Are you sure you don't want to be a Gordon? Now we are first time home sellers! I am so happy for the family that moved in because they were so excited to be first time home buyers. Plus they had two little ones close in age to our kids. It was perfect!

Now we are just settling in, unpacking box after box, making tons of phone calls to new providers/doctors/therapists/etc., finding things in town to keep the kids busy with, and just being happy the hardest part of our year is probably over for now. Hmmmm...should I have just not jinxed myself? Oh well, have a good week everyone! Now for some pics of our beach trip.


Grayson wasn't too kean on the beach arcade at first.



Wack-A-Mole

Family Kingdom Rides Courtesy of Uncle Clyde and Aunt Susan

Hey Mommy!

Riding in a big truck like Daddy. Meep! Meep!

Eating Sand

I love it when he points one and flexes the other...means he's pretty darn excited. Notice the toungue...extra excitement.

Shell hunting.

Quick smile for the camera.

Just washing my face with sand mom. No need to worry.

I love that they can play together so well now. Of course there are times when they can't stand eachother.



He watches everything she does so intently.



Party at the Beach House!

Those are balloon gazes he is giving the camera.

She kept saying, "I don't want to grow to be bigger and three. I want to grow smaller and stay two." Sorry chick :)

We had a big time. That is my Uncle Clyde and Aunt Susan and my mom in the background. We always go to the beach together each year. I hope they are pleased that they made the blog.

Loved the Bubbleguppies cupcakes.

Showing off her gifts.

What I Will Miss...What I Look Forward To

Wow! Half a month has passed and I have posted nothing. That shows how busy I have been. All of the things on the list from the last post have been crossed off. We are T minus 1 day away from being completely packed and ready for vacation before we embark on our family's next chapter. I will not return to our South Georgia home after vacation, but Drew will come back to load up the truck and haul it all to our new home. Its funny because it really isn't a new home for me, but I will get to that in a bit.

I wanted to write about what I will dearly miss about where we live now and how it relates to what I am looking forward to.

I will miss my job. I will miss my coworkers. I will miss my sweet South Georgia babies who entered my classroom smiling and ready to learn each day. Smiley Elementary is a wonderful school. I have made friendships there that will never be forgotten. I told my principal on my last day this week that this has been the best job of my whole life. Even over all the piddly fun little highschool and college jobs, my position as a K5 special education teacher takes the cake. The school is truly awesome, my co-workers are super nice and helpful, and most importantly I feel that I really made a difference in my students' education.

On my last day, my co-teacher said a speech that of course made me cry and my K5 team gave me a beautiful necklace to remember them by. Wregina said that I would always have a kidney table to call home in her classroom. She spoke of the strides we had made over the years with our students and how much we were alike. I have found a life long friend in her and I can't wait till I see her again so we can catch up. We are already discussing when she will come visit.

My sweet babies this year! Co-teaching is so awesome.

My beautiful and talented co-teacher and I at Open House.
I am going to miss this chic!

What I will look forward to is the new challenging 5th - 8th graders awaiting me next school year. I got a job teaching resource at a charter school, whose focus is health and fitness. I taught middle school at my first job and loved it. I am looking forward to going back to teaching middle school. I am excited for the challenge of learning new standards and strategies for struggling learners. I am ready to meet my new work friends and form teaching bonds with fellow teachers. I know this job will be tough. These kids are Title One. They come from inner city neighborhoods, but the school has a major goal that every child will graduate from the highschool that is connected to it. Oh yeah...I am ready for that challenge!

I will miss all the people that were part of our family's life. From the UPS woman that knew to drop our packages off at the school; Our neighbors who would lend a hand or a tool just like that when we called; Marloe and Grayson's wonderful preschool/daycare teachers that treated them like their own; All of Grayson's wonderful doctor's and therapists who wanted him to succeed and lead a typical life; Our wonderful friends we made from being involved in the local community theatre; My running buddies and girlfriends I went off with to the beach, the movies, or just to escape;Work friends; Church friends; Dance Teachers;Babysitters; My sis-in-law who is only 45 minutes away...JUST EVERYONE!!!! We will miss you dearly. You were with us when we began our family. You were there when Grayson received his diagnosis at two days old. You were our support system when Grayson had his surgeries. You were our family. Thank you for accepting us into your community. Thank you for your generosity and support. We love you!

My friends and I at our first mud run.
I will miss it this year because of moving and closing. :(
I will miss our afternoon sweat sessions after work each day.

Aunt BT and Marloe.
Brittany was the only friend I had when I first moved here.
 She was my savior! We will miss being so close BT. Love you!

Girls Nights Out! These were what kept me sane.

True friendships and memories never to be forgotten!

Love my friend Elizabeth! Drew called her his "non-wife".
She was one of the first friends I made here through the community theatre.
I love our girl talks! Now we will be friends for life.

Grayson and Marloe playing with the neighborhood kids on his first birthday.
Great place to live and make friends!

Drew, Grayson, and I at the Buddy Walk last October with a local news anchor.
The Low Country Down Syndrome Community is involved and always
offering ways to connect with other families.

Marloe at her first Dance performance. She loves Ms. Cheryl.

Grayson rockin' it in PT with his Ms. Elaina.
We will miss seeing you each week!

I look forward to reconnecting with old friends and making new ones. I am returning to my home town. In the age of Facebook, I have not lost touch with anyone, but I want to reconnect. I am ready to reform bonds and make new friendships in my life. I look forward to getting to know the Down Syndrome Alliance families where we are moving. They have already been super helpful in suggesting doctors for Grayson. In a larger city, Drew and I will have more oppurtunities to get involved in the DS community. Grayson is already awaiting an evaluation into a special early intervention school just for children with special needs. Words cannot even describe how super excited I am to have that support. Not to mention, my dad's entire side of the family lives there and my mom.

Lastly, I will miss our home. Drew and I bought this house shortly after we were married. We added on, decorated, and learned what it was like to be homeowners. We formed a family here. We became parents. We became parents of a child with special needs. We became parents of a toddler X2. It is bitter sweet. I wish we could move the whole house with us and just lay it on top of our new home.

Christmas 2012

Saturday Morning, Half Naked, Play

South Georgia Dirt Roads are Great for ATVs

The screen porch addition was key.

Lots of first in this house.

Lots of firsts for Grayson, too.

Always warm in South Georgia.

But I look forward to growing as a family together at our new home. We are moving into my mother's house. It is the house I lived in when I was in middle and highschool. I have not lived there since I went to college. My mother is converting the basement into an apartment for her. We are living upstairs.

I know you may be thinking, "moving back in with your mother!", but we have a pretty sweet deal. We will have separate living spaces, laundry rooms, entrances, porches, etc. My mom has already told me that she will help out, but she is not our live in babysitter. She has her own life and she respects that we have ours. It works out for everyone because we can all help eachother out. And later on in life when my mother may need more help she will be with us already. Eventually Marloe or Grayson can live downstairs independently if that is what they want.

I am very excited about the entire move. My family will be right there and Drew's is only 2 hours away. It took having one child to think about moving back towards home, but it took having a second child with special needs to really seal the deal. Our family has a lot to look forward to. Although we are waving goodbye to wonderful people and memories with tears in our eyes, I know this is what is best for our family.

So I will try not to be completely slack during this stressful time. Because we all know moving is stressfull. Hopefully I will be able to post some pics from our vacation next week before the chaotic moving experience begins. Have a wonderful weekend. Hope your summer is great!

All's Well That Ends Well...Grayson's Surgery

My mom and I woke up at 3:45 on Thursday morning to make the drive to Memorial Hospital for Grayson's day surgery(adenoids, tear duct stint, tubes in ears). Drew had to do state testing with his students. Little Sweetie stayed with Wade-O and Gigi, Drew's parents.

Grayson did awesome on the ride there. He was the last "thing" I put in the car before we left. I just kept his pjs on. I didn't think he would wake up, but he did his babbling the whole way there. He was happy in the waiting room and the pre-op room, for the most part. I think he did awesome considering he hadn't had anything to eat since 7:30 the night before. He was also prodded and poked every five minutes by a different health care worker.

The nurse came in and gave him something that she said, "...would basically make him drunk." So I watched as Wee Pie got glassy eyed and moved in slow motion. The doctors came in and said hello. They checked Grayson, and gave us another run down of what was going to happen. Then, after a kiss on the head, they whisked him away in a wheel chair on the lap of the nurse.

I don't know why I wasn't more nervous. Maybe because I had undergone 6 grueling hours of waiting for Grayson's open heart surgery in a cardiac waiting room. One hour and three magazines later we met with the first doctor, the opthamologist, who said that the stints weren't easy, but they were done. He gave us eye drops and said he would see us Monday. Great. Good. One procedure down, two to go.

Thirty minutes later the ENT called us back. He said that everything went well. Grayson had large adenoids, lots of gunk in his ears that they got out, and very large tonsils. The tonsils have to wait, though, because Grayson isn't old enough for this invasive and bloody procedure. He did want Grayson to stay over night. I had already packed and prepared for that.

Then he asked if Grayson ever had petechiae (pronounced puh-TEE-kee-ee). You can read more about it here. Basically it is bleeding under the skin that is rash-like in appearance. Petechiae is caused by popping of blood vessels or low platelet counts. Low platelet counts are usually caused by the "L" word (or luekemia, but we aren't even going there!).

Grayson had his platelet count checked before when he was under a year old because he had petechiae. Drew and I researched it then and we know what the causes can be. Grayson's platelets came back in the clear after two wonderful days of waiting for the results of that test. That's why we aren't going there because those days were anything, but wonderful.

Anyway, I told the ENT all of this information. Dr. Rawlings said that some had popped up during and after the surgery. So Grayson was going to stay over night. I knew he would probably be staying overnight. I didn't mind Wee staying after three procedures and the fact he's had open heart surgery and the fact that he is a child with Down syndrome. I thought it would be best for everyone. So I waited to be called back to see my Wee.

Then when I got back to the recovery room, I didn't even recognize him. He looked so big in the nurses arms with his little wispy curls around his shoulders...wailing, sweating, blood spurting from his nose, and his petchiael rash all flared up. I wish I could have taken a picture of the nurses' faces! I think Grayson Goo really freaked them out and he was living up to his Grayson Goo namesake at that moment. I sat down and took that bloody, screaming boy in my arms. I promptly removed the heavy blanket that was causing my hot natured child such distress.

"He won't take this bottle," the brunette nurse said.

"That's because he doesn't drink from bottles." I replied calmly because I knew they just assumed he took a bottle because he is a child with Down syndrome. "His sippy cup is in my bag. He will drink any kind of juice, but no milk per the doctors."

She got it and filled it. Grayson gulped it down. Then he laid his little bloody, rashy head on my shoulder. The nurses were still freaked out. They told me he was going to the PICU.

"Instead of the regular pediatric floor? Why?" I asked looking around at them and the child life services coordinator.

"We will let the intensivist talk to you when you get there. You didn't meet him?," the blond nurse asked.

"No, I just got back here in recovery. Is this because of the petchiae, his bloody nose, or the fact he is a child with Down syndrome?"

"They will talk to you up there," brunette answered.

Those freaked out nurses took his bed the wrong way as they led him up to the PICU, all bloody and wailing again. I later found out that they don't do very well in day surgery recovery with kids. They just aren't used to them because most of the patients are adults. I'm sure Grayson Goo was a doozy!

The PICU experience was wonderful. I loved Grayson's two nurses that watched over him. The intensivist, Dr. Paden and the resident, Dr. Haupt explained that Grayson's petechiae was the reason he was here. Dr. Paden told me the fact the rash was above the neck lead him to believe it was just popped blood vessels due to crying. They just wanted to monitor him and make sure he recovered okay.

Here is where the story gets funny. We stayed in that PICU till around 5:00 that evening and then Grayson was discharged. Wee Pie got much better. He was playing, throwing balls, waving to the nurses as we took walks, and eating/drinking fine. He took several naps on me and his daddy. He needed tylenol and motrin, but overall we could have gone home after the recovery room.

I think Grayson's disability just freaked the recovery staff out. Disabilities and differences do that to some people. The recovery nurses just weren't ready for all the petechiae, blood, sweat, and tears Grayson was ready to give them. Grayson needed extra time to recover and the PICU staff accepted him with  understanding open arms. Perfect lesson in how kids with Down syndrome just need a little extra time to do things.



Poor baby ready to sleep on the ride home.
 Only picture I got of the whole day.
 Petechiae is hard to see in this picture.



I chuckle about it now and I though the whole thing was funny then, in the moment, at the hospital. Grayson is still doing well. He has been playing all weekend with his grandparents. He chomped on ravioli, mashed potatoes, hamburger, and spaghetti among other snacks. I can already tell he is hearing better and more aware. Everyone who's child has had the procedures told me I would see a difference right away. They were right.

Have a good week.

Words on a Wednesday: Pics of Easter (with captions)

I wanted to post pics of our Easter weekend with captions of who each person is. So this Wordless Wednesday will just have to have words. I wanted to post these Monday, but life got in the way. Who would have thought that!? And on a break, no less. Anyway, I am posting most, if not all of them because I love them all and I want to share our great day.

First we woke up on Saturday and the Easter Bunny had come! Yep, we did it on Saturday to avoid dragging everything up to Drew's parents and then back home again on Monday. Plus, we knew that other family members had gotten those spoiled rotten children goodies, so they still made out like bandits on Easter Sunday.



Checking out the bunny loot. Of course it is a cookie!

 Then we drove to GiGi and Wade-O's house for the Easter festivities to begin.

Marloe needed Easter Sunday shoes and eggs to dye STAT, so I went to the store and scored both. Here is her having more fun playing in the dye than prettying up the eggs.

Look at the focus on her face

The Wee Pie was asleep during all of this. Egg dying occurred after his bed time.

Waiting patiently

Needless to say, she went to church the next day with one green hand and one purple hand.

The next morning, we were off to church. This is the best picture I got of them in their outfits, with the grandparents and Drew taking the picture. I think we did okay considering I got none of them last Easter.

Marloe continued her paparazzi face hide at church.

Because you know she is just that important.

Grayson did much better. He even kept his hat on for a while.

Grayson with his GiGi and Nanny.

Grayson with his Aunt Nikki and Uncle Chris. That is such a Marloe face he is making.

After church we headed home to get in our party duds for the Sewell family Easter celebration hosted by GiGi and Wade-O. The place was decorated with Easter fare including Marloe's sparkly eggs.

While Grayson napped...

Marloe and Uncle Chris had a blast with the bubbles he and Aunt Nikki brought her.

She held tight to her Easter basket the whole time in case an egg appeared.

Bubble chaser.

I could definitely use this picture to teach opposites. Tall and Short!

Grayson woke up and was finally able to join in the fun.

Grayson, Gramma, Aunt Lisa

Grayson and Yung (cousin)

Nikki, Grayson, GiGi

Cousin Love

Playful Faces

That's Katie in the last two pics. Marloe loves that chic!

Uncle Harry and Aubrey joined in, too.

Girl Talk

 We love you, too, Katie Bug!!!!

Here is the last of them. Just some miscellaneous pics from the weekend. Mostly Marloe hunting eggs.

Aunt Shelia and Aubrey

Nanny and Drew

Marloe from Easter morning.

Okay, that's all of the rambling and words on a Wednesday I have. Sorry it's so many pictures, but I just liked all of them. I didn't want to post and rant on Facebook, blowing up every one's news feed. So, this way those that want to look can and those that don't, won't.

That is all. Happy Spring Break Again!!!!!