We Are So Thankful

The season of thanks is upon us once again and we have so much to be thankful for this year. Along the journey, we have learned to be thankful for everyday and grateful for all of the little moments throughout the year. As we reflect upon the last year, one thing stands out most; progress. We are so thankful for progress. Braxton has accomplished so much in a year and what once was very slow progress, is now exploding in so many ways.

This time last year, Braxton took his first unassisted steps and at most walked about 10 steps on his own. He was eating 2-4 ounces per day. He had no words and minimal sounds. Though progress was slow, there was, in fact, progress. Braxton can now walk unassisted, albeit a bit wobbly, an entire city block.

He’s on his feet more than he crawls around. He eats nearly 16 ounces every meal and you’d never guess there was ever a time he couldn’t or didn’t want to eat. He still has no words, but he is so much more vocal these days. Thanks to technology, he now has a voice through the Augmentative and Alternative Communication (AAC) app, Speak For Yourself on the iPad. He’s learning everyday how to use the app to communicate with us.

Braxton pointing and telling me he wants to eat on SFY.

Braxton pointing and telling me he wants to eat on SFY.

His dexterity, focus, and fine motor skills are still slow to come, but he is so much farther along this year.

Braxton learning to string beads

Braxton learning to string beads

These are huge accomplishments for Braxton, but there are also so many little things we are thankful for this year.

 

 

We’re thankful for the coos and babbles that wake us before the sun, because it means we’ve been granted another day.

We’re thankful for the extra minutes of rest we can steal when Braxton will snuggle in bed with us.

We’re thankful for the sweet smile and not-so-gentle pat on the back that says, “Wake up, guys!”

We’re thankful for the sweet way Braxton pulls you close for a hug and rests his head on your shoulder.

We’re thankful for the way Braxton pulls our arm back around him when the hug wasn’t quite long enough.

We’re thankful for the look Braxton gives when he recognizes you and the way his eyes light up and his beautiful smile crosses his face.

We’re thankful for the way his whole body tenses up and he shakes with excitement, or kicks his little legs.

Big Smiles

We’re thankful for silent way Braxton says “I love you.”

We’re thankful for the incredible sibling bond he shares with his amazing big sister.

A sibling love that cannot be broken.

A sibling love that cannot be broken.

We’re thankful for the messes Braxton makes, because it means he’s mobile and independent.

We’re thankful for the countless hours of therapy that have helped Braxton along the way.

We’re thankful that we are down to seeing our specialists once a year.

We’re thankful for Braxton’s good health as of late.

We’re thankful for the sweet moments in parenting that melt away bad days and tell us we must be doing an alright job.

Sleeping

We’re thankful for therapists who have been in our home since Braxton was 8 weeks old. Their tireless work with Braxton goes far beyond therapy. They love and care for our sweet boy and share in our pride when Braxton reaches a goal. Braxton is not just a patient or a paycheck to them. We have been extremely blessed.

We’re thankful for wonderful teachers who have joined our team this year and have already fallen in love with Braxton. They have such a love for all of their students and we’ve seen such progress since Braxton started with them in August.

Braxton walking with his teachers

Braxton walking with his teachers

We’re thankful for the tantrums Braxton throws when he gets told “no” or has a toy taken away, because it shows he has the cognitive ability to understand and a way to communicate when something is unpleasant. It’s also a “normal” toddler reaction, so it’s a nice reminder that not everything in our life is atypical.

Braxton Upset

 

We’re thankful for the times Braxton gets himself in trouble by opening the oven door, swinging the lid on the trashcan, opening the cabinets and banging pots and pans, or unraveling an entire roll of toilet paper, because do you know what cognitive and motor skills it takes to do any of these things!? Although it can be frustrating and we get upset with Braxton, inside we are elated because this shows so much progress!

We are thankful for the sweet laughter that fills our home daily.

 

We’re thankful for family that loves and supports us in so many ways.

We’re thankful for friends who care and share in our joys.

We’re thankful for people who read our blog and share our Facebook posts and have fallen in love with a little boy they have never met.

We are thankful every day for so very much in our lives. We remain positive in our journey because positivity has so much more power and love than focusing on the negative. We have bad days, but they don’t last long because we allow positivity to permeate every aspect of our life.

We wish the same for you. Look for opportunities to be thankful. Live every day with gratitude and positivity. Let your thanks extend beyond today and this season. From our family to yours, we wish you a very Happy Thanksgiving.

 

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Braxton Goes to School

Friends, I can hardly believe the words in front of my face: Braxton has been in SCHOOL for TWO MONTHS! 50 days…approximately. (Not that I’m counting or anything). We have had an incredibly amazing start to our special education journey. It’s no secret that I was VERY worried about putting Braxton in to school and scared that he would regress because he was no longer in a full time program. I’m happy to report that I was VERY wrong. The journey is different for everyone, but so far, ours has been a success.

First Day of School

Braxton and Aileen(Don’t worry, I promise not to do all fifty individually, it’s just logical to start at the beginning). I was an absolute MESS the first day of school. We attended “Meet the Teacher” night the week before and I felt some of the tension release when I finally met Braxton’s teacher. She seemed very nice and caring and despite the million questions I had, she never once rushed me away or made me feel like my questions were unimportant. She also mentioned that she had spent some time reading our blog and getting to know Braxton. Imagine my surprise! I can’t even get a doctor to read Braxton’s chart before they walk in the room for a scheduled appointment. But that’s another story for another time. Braxton explored the classroom without hesitation and we dropped off his school supplies.

The teacher asked me to come in before school started to talk about Braxton’s feeding routine and wanted to make sure they were prepared. When I arrived, I learned that the Speech Therapist had given them a crash course on Blenderized Diet and how to puree food, so the teacher’s thought THEY would have to blend his food for him! I’m sure there was a collective sigh of relief when I let them know I would provide Braxton’s food already prepared daily. They were able to watch Braxton eat and I gave them some tips and talked about some of the things we watch for when he’s eating. I was a little worried that a new place and new people might make Braxton a little anxious and make him not want to eat the first day, so I asked if I could at least stay that first day through lunch to help mitigate any issues.

First Day of School!

First Day of School!

Despite having attended the back-to-school night and meeting the teacher a few days later, I was still quite scared for his first day. I don’t think there is anything quite heartbreaking and exciting for a parent as sending a child to school for the first time. I dressed Braxton in some new “big boy” clothes, prepared his lunch, and put everything in his cute little backpack. I felt the tears well up. When we got to school, I walked Braxton to class and got to sit through their welcome routine. To my surprise, Braxton sat still on the carpet with his class and paid attention to his teacher as they sang and welcomed everyone to school. When I sat in on the class last year, I remember thinking “yea, there is NO way Braxton is going to sit for all of this.” Well, he sure showed me! (As he often does). The classroom aide was wonderful with Braxton and his other classmate who is not very mobile. She helped them clap and move and stand, and it was just awesome to see. We went to lunch, and Braxton decided that he did not want to walk so we had to carry him. At this point, we discussed the use of a wagon at school for long distances. I was pretty adamant that I did not want Braxton using a walker, but I was okay with a wagon as long as they did try to walk with him first. When we got to the cafeteria, I let the teacher feed him so that I could see if he would have any anxiety about the noise in the cafeteria and a new person feeding him. Braxton had gotten used to different people feeding him in daycare, BUT he would get upset if someone started feeding him and then  a new person came in mid-feeding. I was also worried all the new people and sounds would keep him from wanting to eat. Again, he made mom look a liar! He ate like a champ. The school speech therapist was also present to evaluate his eating and make sure they took all the necessary precautions. Everyone was on board and pleased with Braxton’s eating skills. It’s amazing how far he’s come. If you spent any time with him now, you would NEVER guess that there was ever a time when I couldn’t even get the spoon near his mouth. I left the school confident that Braxton was in good hands, but I did cry on the way home.

The first few days were a little bit tough on me, but Braxton did wonderfully. The teachers reported that he was doing well for them in class and adjusting to the routine quite nicely. He was also eating quite well for them at lunch. Braxton relied on the wagon quite a bit in the beginning, but the teachers assured me they were walking with him in class a little more each day. I was confident that Braxton would adjust to the schedule and slowly be more tolerant of walking a little bit further every day. When we met for our first ARD in June, I asked that we have a new one when school started so that I could meet the therapists who would be working with him and also provide updates because I knew he would grow so much over the summer. We also had to adjust his IEP to allow for the school to feed him based on the recommendations of his doctor and a Modified Barium Swallow Study that told them it was safe for him to eat by mouth and bypass his g-tube. After the first week, I contacted his teacher to go ahead and schedule the ARD.

Back to School ARD (IEP Meeting)

For Braxton’s first ARD of the school year his teacher, school PT/OT/ST, Assistive Technology Rep, Hearing and Vision teachers  and ARD facilitator were present. I provided the committee with a copy of a report I had typed up for Braxton’s pediatrician. We had spent the summer visiting all of Braxton’s specialists and getting updates on his health and seeing tremendous growth from Braxton as well, so I wanted to be sure everyone had the most current information about him. I talked to them a little bit about the new things we were seeing like his endurance for walking longer distance with moderate assistance, babbling and vocalizations, and of course eating like there was no tomorrow. We reviewed Braxton’s goals and I told them a little bit more about my goals for him at the end of the school year. My two biggest concerns were communication and mobility. I wanted Braxton to start using a communication device from home and I wanted him to walk independently without the use of a walker because he was already very close to doing so. The school speech therapist and assistive technology rep both said they wanted to talk with me further about an AT evaluation, and we decided to set that up separately from the ARD. It was a short, sweet, and productive meeting for everyone and after all the horror stories I’ve heard, it was nice to leave the meeting with a sense that everyone was aboard “Team Braxton.”

I went next door with the speech therapist and AT rep to discuss communication options. Braxton’s teacher popped in as well and was very interested in learning more about our plans for Braxton. I was beyond thrilled when I learned that our district would provide Braxton with ANY communication device/program necessary until he graduated from the district! I was flabbergasted. I’ve talked to SO many parents who have fought tooth and nail to get the district on board with bringing a device FROM HOME, that it was nice to hear them say they would provide what he needed and we would be able to take it home daily and over the school breaks. We talked about different iPad programs and options and the ST and AT told me they would begin evaluations with Braxton’s the next week. Braxton’s teacher was also quite excited to start working with a device with Braxton, so again, it was such a huge relief to have everyone on board and not have to put up a fight for anything at all.

Adjusting to School

School is exhausting!

School is exhausting!

After the ARD, things seemed to continue going well. As Braxton adjusted to his new schedule, he was coming home quite exhausted! Over the summer, he didn’t really nap a whole lot, so it seemed as though he was growing out of the need for a daily nap. He slept for an hour at most each day. Once school started, he had therapy every morning and then school from 11 am to 2pm. When he got home at 2 pm, he fell asleep almost immediately and slept 2-3 hours every day!! He’s adjusted quite well now and doesn’t fall asleep until bedtime. Sometimes, we will put him down around 4 pm because he starts to get a little cranky.

Color time!

Color time!

Within a couple of weeks, I started to notice Braxton making some changes at home. He was standing a lot more and walking between us and cruising all over the house. We put a crayon in Braxton’s hand and he colored for the first time ever! The teachers continued to tell us that Braxton was making progress and doing well in school. They told me that he was starting to walk more for them as well once he got used to the schedule. Our school is really great about having family events and getting everyone involved, so I really saw his progress when we attended these events. He walked from the parking lot in to the school and around the school with no problem, colored, played, and smiled the entire time. His teachers fell in love with him pretty quickly and vice versa. There have been mornings where Braxton is very cranky and won’t cooperate with me at all, but the second we pull in to the school parking lot I hear him laughing and babbling in the back seat. As I get him out of the car, his little hands go up in the air and his whole body begins to shake as a huge smile comes across his face. I can tell that he is excited. He walks with me over to his teachers and his face just lights up. He walks to his aide and gives her a big hug every single morning. And his teachers are always happy to see the kiddos. They greet everyone and acknowledge the kids and always seem to genuinely be in a good mood. I know that Braxton is in really good hands and his teachers have a sincere vested interest in the kids’ success.

Braxton walking with his teacher and classroom aide.

Braxton walking with his teacher and classroom aide.

Now, two months in to school Braxton is transforming right before our eyes. He is closer than ever before to walking independently. He will now walk by himself at home and in the classroom. He walks from the living room over to the playroom, or just from his feeding chair over to a nearby toy. He’s even stood up in the middle of the floor and kept walking completely on his own. It’s mind-boggling to look up and just see Braxton walking right by me to get to a toy in the other room. It’s been a long hard road, but it’s paying off BIG! Braxton’s gross motor skills are taking off. His fine motor still needs a lot of work, but we’re seeing progress. He is starting to babble and vocalize much more as well, which is certainly promising for us. I truly feel that we will have a verbal breakthrough soon and Braxton will have some speech. I know that using his communication device is going to help his language develop as well, so I’m really excited to see how he does. I will write more on our AAC journey as well. (Soon! I promise!!) Lots of exciting things happening there!

Overall, I have been quite pleased with our start to school. It’s still hard to believe that our little guy is actually in school, but it has been wonderful for everyone. He attends Aileen’s elementary school, and she is elated that he goes to the same school as she does. She is SO proud of him and having him in school has even helped her! She worked out an incentive with her teacher and Braxton’s teacher that allows her to go in to his class and read to them every so often. She loves being able to go in to class with him and I’m sure Braxton likes seeing her as well.  I love that everyone is working together for Braxton and am so glad to see him flourishing. My sweet boy is growing every single day and we are full of so much hope for the future.

Here are some other great photos from his first couple of months at school. There are also a lot more over on Facebook page, so hop over there and give us a “like.” You know you could use a little bit more Braxton in your life. :)

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Dear PPCD Teacher…

It is still hard for me to fathom the reality that Braxton is going to start school on Monday, but whether I like it or not (or am ready or not!) it’s happening.  I have been working this week to update Braxton’s Care Notebook and writing a new letter to his new PPCD (Preschool program for children with disabilities) teacher.  His Care Notebook has his medical history, information about his feeding, how to feed him, how to administer medication if he needs it, and what to do in case his g-tube comes out or other emergency.  I have also prepared a spare G-tube kit with instructions. (I will write another post later with a little more on these).  I’ve tried to prepare as much as possible for Braxton’s teacher and hopefully we haven’t missed anything! As we did last year, I’m going to share Braxton’s letter with you. If you read the previous letter, you will really see just how far Braxton has come in a year. This little boy is truly amazing!!

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Dear PPCD Teacher,

BraxtonThis handsome little boy is our son Braxton (or Brax as we sometimes like to call him). We are so excited to see him take on this next chapter of his journey and look forward to working with you this year! We’d like to give you a little introduction to Braxton as he begins this school year.

Braxton is 3 years old and currently has a diagnosis of Rubinstein-Taybi Syndrome (RTS). Don’t feel bad if you don’t know what this is, because it is pretty rare. Rubinstein-Taybi Syndrome is characterized by distinct facial features such as a beaked nose, almond-shaped eyes, small head and jaw, broad thumbs, and a smile that causes the eyes to slant and almost completely close. Children with RTS also have a variety of medical issues that can affect the heart, brain, and digestive system. Braxton is followed closely by many specialists and is currently medically stable. We just followed up with all of our specialists this summer and they are all pleased with his progress and have no significant concerns. Children with RTS also have significant developmental delays but do attain all gross motor skills. Fine motor and speech will be Braxton’s biggest challenges.

Regardless of his diagnosis, you will quickly see that Braxton is just like most of his 3 year old peers in so many ways. He loves to be on the move and play with his favorite toys. He is determined and will work hard to get his way. His receptive language skills are growing every day and you will begin to see his understanding after a short time. He understands the word “no,” but like most 3 year olds, he is not happy with being told ‘no’. He will pout, whine, cry, and if he’s feeling especially dramatic, he will throw himself backward. This is also how he tells us he does not like something (be it an activity, doesn’t like that we stopped an activity, or took something away from him.) He can easily be redirected to calm him down. If that does not work, you can pick him up and swing him a little bit and he will start to laugh. Occasionally, he will shake his head to mean ‘no’ in response to a question or activity. He does also understand a few short phrases like “It’s time to eat,” “come here,” “time to go bye-bye,” “all done,” and “let’s read a book.”

Right now, Braxton does not say any words. He communicates with us using non-verbal cues, some gestures, and vocalizations. We communicate with him using Total Communication, which includes talking to him, Sign Language, Picture Cards, and Augmentative Communication Programs. He has not picked up any sign language at this time, but he understands the idea of the picture cards and Augmentative Communication Programs. He will accurately choose a toy or an activity on his iPad when given 4 choices about 75% of the time right now. Picture Cards or AAC opportunities should be given during instructional time as often as possible. Some opportunities might include, during circle time to choose the correct day of the week, to choose a song/activity, during center time to choose a center, or outside to choose which apparatus he would like to play on. We will work with the district Assistive Technology teacher, our speech therapist, and you to find a program that will grow with Braxton to use as his voice as the year progresses.

Braxton is currently working very hard to walk independently and is very close to doing so. He will walk very well with us if we are holding his hand, and often he merely holds on by one finger. He is gaining confidence to walk short distances without assistance and this should be encouraged as much as possible. When walking, you must only hold one of his hands. The moment you hold both of Braxton’s hands, his legs magically turn into wet noodles and he crumbles to the ground. It’s really quite amazing. He crawls really well and likes to “walk” in a tall-kneel position. He is currently using a combination of crawling, kneeling, cruising and walking to get around his environment. With a little bit of work, we really believe Braxton will be walking on his own very soon.

Braxton is a very easy-going and happy little boy. He has a bright smile, an infections laugh, and he radiates so much joy. He LOVES music and lights. And he loves to listen to the different sounds things make when they hit the ground, so he will often pick toys up and drop them. His current favorite game is peek-a-boo. He initiates this game often by covering his eyes with his hands. If you say “Where’s Braxton?” he will uncover his eyes and wait for you to say “Peek-a-boo” and then he will give you the biggest smile and a high-five. He also loves windows and doors, so it would be good to not seat him directly next to a window or door because he will want to stand there. He is also very curious, so if he sees an open door, he is very likely to crawl out. Braxton also needs extra sensory input at times and will chew or hit his head to get that input. We redirect his chewing to something that is appropriate like a chewy tube or his pacifier. He will often chew on a plush toy so that he can focus on an activity in front of him. He does not head bang as often as he used to, but if he does, it should be redirected. He loves big movements like swinging, jumping and spinning. He loves being outside and feeling the breeze as he swings back on forth at the park.

Overall, Braxton is pretty easy to care for and is very interested in learning. With a little bit of time, his personality will begin to shine through and he’s sure to steal your heart. If you want to learn more about him, please feel free to ask us or browse his website at braxtonjoseph.com, where we regularly write about our journey and experiences. We strive to keep open communication with all of our teachers and providers, so please do not hesitate to contact us if you have any questions or issues. And please keep us updated on his progress; there is nothing too small! We are so glad to have you on Team Braxton and look forward to an incredible school year! Thank you for taking the time to read about Braxton and for your dedication to the PPCD program.

 

Thank you,

Vanessa and Joseph

 

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Happy Tubie-versary!

Today marks 3 years since Braxton’s very first surgery, which was to place his G-tube.  Braxton was just 2 weeks old and still in NICU when it was placed.  You can read all about the Day Braxton Became a Super Tubie from last year’s post.

We have come a very long way in 3 years.  I still remember everything about the day we were told he would need a tube and the day of surgery. When his button was first placed, we honestly had no idea how long Braxton would need his tube and the doctors could not provide anything other telling us he would need to have it “long-term.” We have had many struggles with eating over the past few years and we are very grateful that Braxton has had his tube all this time.  His tube has allowed us to feed him even when he is sick, give him medicine when needed, and make sure he gets the nutrition he needs to gain weight in a healthy manner.

Braxton climbing in to his chair getting ready to eat!

Braxton climbing in to his chair getting ready to eat!

Braxton is finally eating by mouth, something we weren’t sure if he’d ever really be able to do.  He is eating about 30-40 ounces of pureed foods every day! He gets about 1100-1300 calories per day and we supplement with a multi-vitamin to make sure he is getting everything he needs nutrition wise.  We haven’t had to use his tube for food in quite some time, which is a magnificent feat! Braxton even tells us when he is hungry now, which is HUGE for a tube-fed child! Because children with feeding tubes are usually kept on such a strict schedule, they do not know or understand what it means to be hungry.  Braxton still does not speak, but he will “tell us” he is hungry by going over to his feeding chair, climbing in, and he will sit there until we notice him. If it’s not quite fast enough for him he will start to whine/cry to let us know “hey! I’m really hungry over here!” He’s eating every 2-3 hours right now and his schedule was every 4 hours before, so he is really understanding what food is and what it means to be hungry. He truly enjoys eating now, and that is fantastic!

We still use Braxton’s tube for fluids because he isn’t quite drinking anything by mouth yet.  We have been working on straw drinking in therapy and he has drank up to an ounce! We’re working on different flavors and increasing that volume.

So, we truly know now that Braxton will not need his tube forever, but it’s still not going to be taken out soon.  We want Braxton to be fully drinking on his own and eating “table food” before we remove his tube.  We are making significant strides in the right direction.

Braxton, Super Tubie!

Braxton, Super Tubie!

The other day, I saw a post on the Feeding Tube Awareness Foundation’s website about an interview with siblings of children who are tube-fed and found their perspective very interesting! Since special needs and things like tube-feeding really effect the whole family, the FTA group brought in this sibling perspective.  This inspired me to talk to Aileen about her brother’s tube and see what she knew and what she thought about his g-tube.  I recorded the conversation and thought it would be great to share in honor of his tubie-versary!

Enjoy!

 

 

 

 

 

 

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Braxton Turned Three!

Braxton just had his third birthday! We are so thrilled with the progress Braxton has been making and cannot wait to see what the future brings.  We are getting ready to embark on the next journey with Braxton as he starts school in the fall, and took time to celebrate this milestone with family.

Some milestones for Braxton this year:

  • Braxton is officially cruising along walls, furniture, and anything that can hold him up!
  • He still likes to “walk” on his knees, but he’s doing more cruising than crawling which is exciting.
  • He took his first independent steps in therapy in November of 2013, and will take a few steps now, but mostly he walks with one hand being held.
  • If we try to hold both of Braxton’s hands, he decides his legs are spaghetti and refuses to walk! Little joker, that kid!
  • Braxton is FINALLY eating by mouth as of January 2014 and is officially over his severe oral aversion.  He eats up to 40 ounces of pureed foods a day.  We are still working on solid table food, but as of now he’s not a fan.
  • He is also working on straw drinking and has so far only taken a few sips, but he’s getting better!
  • He still has not learned any sign language or shown any interest, but we are continuing to learn and model for him just in case he decides to catch on and begin using signs.
  • We have been working with an iPad to communicate with Braxton and letting him make his own choices.  We use an app called Sounding Board and use 4 pictures of objects Braxton knows.  (Or 4 activities he can choose from). Braxton effectively scans the board and makes a selection indicating his preference.  He understands the purpose of the iPad and will reach out for it again when he’s made the wrong selection or is done with the current activity.
  • Braxton’s receptive language has grown by leaps and bounds! He understand so much more now.  Some words/phrases he knows are “It’s time to eat” – he whips his head around so fast and gets right over to his chair to eat.  “Let’s go bye-bye” – he will stop his activity and go to the door when it’s time to leave.  “come here” – About 70% of the time when we call his name or ask him to come to us, he will.
  • Peek-a-Boo is hands down his favorite game.  We ask “Where’s Braxton?” and he covers his eyes with his hands and waits a minute before uncovering them.  When he uncovers his eyes we say “Peek-a-boo” and he has THE biggest smile across his little face.
  • We are down to annual appointments with all of his specialists, which is great! At this point, Braxton is “medically stable” and we are just monitoring a few things to make sure there is no cause for concern later.
  • Braxton is still receiving Physical Therapy, Speech Therapy and Occupational Therapy twice a week.  Our therapists will continue to work with him once he starts school as the school therapies are not enough to ensure his success.
  • It seems like there is something new every week here lately, so be sure to keep up with us on Facebook so you don’t miss out!

 

This year,Braxton’s birthday party was superhero themed! We asked all of our friends to come to his party wearing their favorite superhero costume or t-shirt. At the party, we had felt capes and foam masks so that everyone could decorate their own! I also made a large city scape background for photos and just as a decoration.  Braxton did get a little overwhelmed again this year, but he participated a little more in activities and enjoyed his special day.  Here are some fun photos from his birthday party!

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Why Braxton’s Dad Rocks

Day in and day out, Joseph proves to be an awesome father to Braxton and his sister.  He doesn’t always get the credit he deserves, but we are so grateful and appreciate everything he does for us!

So, In honor of Father’s Day, here are just a few of the countless reasons why Braxton’s Dad rocks!

1. Braxton’s smile is never bigger than when he is with his Daddy.

Braxton with Dad

2. Dad isn’t afraid to get down and let Braxton “wrestle” him to the ground.

3. Bath time is always more fun with Dad.

Bath Time

4. Dad sings all kinds of silly songs to Braxton all day long.

5. Dad makes super cool airplane noises when feeding Braxton.

6. The love of music is deep inside both of them.

Music with Dad

 

7. Dad takes Braxton to school when he is home, so that mom can sleep a little bit extra.

8. Walking with Dad is the best.

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9. Dad will do anything (no matter how silly he looks) just to make Braxton laugh.

10. Dad always finds the coolest toys!

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11. Dad, without fail, makes sure Braxton gets plenty of fluids via g-tube.

12. Dad pushes Braxton around in his toy cars over and over because Braxton loves it.

13. Dad is a diaper changing ninja!

14. Dad is always full of fun, love, and laughter!

15. There is no love greater than the love Joseph has for Braxton.

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There are many, many other reasons why Braxton’s dad is amazing, but I don’t think we have enough space to host them all here on WordPress.  ;)

Happy Fathers Day to all of the amazing fathers out there!

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Beginning Our Special Education Journey

Braxton has been enrolled in Early Childhood Intervention (ECI) services since he was discharged from NICU.  ECI has helped us to coordinate therapy and necessary interventions for Braxton.  Unfortunately, ECI only works with children until the age of 3.  Once a child turns 3, their local school district takes over and serves children through their Preschool Program for Children with Disabilities (PPCD) program.  I had no idea a 3 year old could be enrolled in public school!

As you can imagine, this new chapter in our journey has left us with a lot of learning to do and many questions.  For the first time in a couple years, I don’t know what to expect.  It’s actually a little frightening.  But, as usual, we are learning and adapting and Braxton is showing us the way. The transition in to school is different for every person, for every district, for every school. Here is just a little bit about our journey so far.

Transition Meeting

Braxton and Dad at our Transition Meeting

Braxton and Dad at our Transition Meeting

Back in March with met with the Special Education coordinator for our district and our ECI case manager for our “Transition Meeting.”  The Transition meeting is usually scheduled about 3-4 months before your child’s 3rd birthday.  At this meeting, we were able to discuss the process of transitioning from ECI into the PPCD system.  The coordinator explained the processes for the district and explained all of the different Special Education programs our district offers.  There are programs for children who only need a help with Speech, programs for Deaf/Hard of hearing children, programs for children with multiple disabilities, and a few others.  She wasn’t able to really tell us what placement Braxton would have until he had his initial evaluation. We were able to ask questions about the process and find out a little bit more about our next steps.  A lot of our questions could not fully be answered until after Braxton’s evaluations. The transition meeting was only to describe the process. They also sent me home with packets to fill out about Braxton’s skills and needs to bring to our parent interview.

 

Parent Interview & Child Observation

At the end of April, we went back to the Special Education Office in our District for Braxton’s evaluations.  Evaluations must take place within 30-days of the transition meeting.  The evaluation can look different for everyone, but it is usually a series of play based assessments and parent interviews.  Evaluators will “test” your child by playing with them and engaging them in activities to see where their skills are in each area. They will also speak with parents to get a better understanding of the child’s skills and needs.  For our evaluation, the team asked me to be the play facilitator.

Our team included the Special Education Coordinator, Licensed School Psychologist, Physical Therapist, Occupational Therapist, Speech Therapist, Assistive Technology Specialist, Auditory Impairment Specialist, Visual Impairment Specialist, and Orientation & Mobility Specialist.   I played with Braxton while each member of our team watched and took notes about how Braxton played, what skills he had, how he interacted with me, how he reacted to the new environment and new toys.

For us, the entire session was videotaped so the evaluators could go back and watch for things they might have missed.  As Braxton and I played, the team asked questions about Braxton’s medical history, current therapy programs and goals, and upcoming medical visits.  They asked to show them certain tasks to see if Braxton could complete them.  Things like manipulating a pop-up toy; pushing a button, flipping a switch, turning a knob, sliding a button to make a toy pop up and pushing it down to do it all over again.  These tasks show Braxton’s fine motor skills and are important in an educational setting.  We did things to show Braxton’s gross motor skills by having him crawl and walk and move around the room.  I set up Braxton’s iPad to show them how he is able to use it to make choices.  Braxton, much like any child being asked to do things, decided not to cooperate for some tasks. For instance, he refused to show them he could walk on his own.  He didn’t even want to walk holding our hand.  Thankfully, I had videos on my phone of him doing these things and was able to show them to the evaluators.  For children who do not do well in unfamiliar environments (and those who are stubborn 2-yr olds!), video evidence is excellent in helping the team see all of the things your child can do.  It helps with the planning and setting of goals.  The team then convened to meet and discuss their preliminary thoughts about placement, support, and additional information they needed privately.  They came back to discuss some of their observations, concerns and additional questions.  A few of the evaluators requested that we come back for a secondary evaluation so that they could test a few specific things they did not see in our play based assessment.    I was also given a few assessments to take home that delved further in to Braxton’s social and emotional state for evaluation.

Secondary Evaluations

The Visual Impairment Specialist, Orientation & Mobility Specialist, and Occupational Therapist each asked for us to return for a secondary evaluation.  Two weeks later, we returned at their request.  The Vision Teacher wanted to see more of Braxton’s visual tracking abilities and what his functional vision looked like.  Sitting in a classroom, Braxton would need visual support due to his eye abnormality and the Vision Specialist wanted to get a better idea of exactly what he would need.  The O&M specialist wanted to see if there were any concerns about moving in different environments and safety issues due to his vision impairment.  Sometimes kids with visual impairments have O&M issues such as stopping when tile meets carpet thinking the two surfaces are uneven, phantom steps when climbing stairs, and difficulty stabilizing gait on uneven surfaces (such as rock playground, backyard, etc). The Occupational Therapist wanted to see more of Braxton’s fine motor skills like his ability to turn pages in a book, use of a pincer grasp, use of selective pointing, and other skills we have been working on.  This evaluation was much shorter and everyone got what they needed.

Admission, Review and Dismissal (ARD) Meeting

So, the rest of the country calls this an Individualized Education Program (IEP) Meeting, but Texas calls it an Admission, Review and Dismissal (ARD) Meeting.  They do this because at this meeting, you are either admitting a student, reviewing a service plan, or dismissing a student from services.  The ARD must be scheduled before the child’s 3rd birthday. Since Braxton’s birthday is in the summer, his entire process had to start a little bit early so that it would all be completed before the end of the school year.  For students with birthdays in the middle of the year, they can actually start the day after their 3rd birthday, so right in the middle of the school year!

For Braxton’s ARD, only part of the evaluation team was present.  We had the Licensed School Psychologist/Early Childhood Specialist, Speech Therapist, Vision Impairment Specialist, Auditory Impairment Specialist, Orientation & Mobility Specialist, and our ECI coordinator.  ECI is usually present to make sure the transition is completed and so they can close out the file with ECI.  Each team member presented the results of their evaluations and gave their recommendations. I had a chance to ask questions about the reports and the recommendations being made. We discussed the therapies being recommended, how they would be implemented and the frequency with which they would be offered.  We also discussed Braxton’s official placement in a class and school.  Finally, we went over the goals each team member had in mind.

Overall, the meeting went well.  I had a few questions about the report which was provided to me the day before the meeting.  Last night, I went through the report with a highlighter and wrote down several questions about the recommendations, goals, and my concerns.  The team listened carefully to my concerns and answered all of my questions.  Initially, they recommended that Braxton be in the morning session, but I requested Braxton be in the afternoon class so that we could have his private therapies in the morning before school.  Afternoon spots are always a little bit harder to come by, so I wanted to accommodate their schedule as well.  I’m glad everyone was receptive to my questions and was pleased with the outcomes.

Recommendations/Placement/Plan

So, what did we decide and how did it all turn out? Well, we are going to enroll Braxton in school for the 2014-2015 school year.  I am sad to pull him out of his daycare, but I think this can be a successful program for him.

The ARD Committee recommended their PALS class that is offered at the same school Braxton’s sister attends.  The PALS class is intended for students who need help with pre-school academics, language, and social skills.  For our school district, this class is only 3 hours each day and Braxton will attend in the afternoon from 11 am to 2pm.

Braxton was recommended for all therapies offered in school.  He will have school based Physical Therapy and Occupational Therapy.  School therapy differs from private therapy in that the goal of school therapy is to help the child be successful and promote learning.  The school PT and OT will come in and work with the class as a group and help the teacher with seating, placement, equipment and incorporating goals in to the class curriculum.  They will only be working with Braxton 60 -75 minutes per 9-weeks.  I was told these are minimums and that the school therapists typically spent much more time than this in the classroom.  The school PT goal was that Braxton would be walking with an assistive device 75% on his own by this time next year.  This is the only goal that I disagreed with.  Unfortunately, the PT was not there, but my concern was put in writing and we will reconvene to address it.  I told the team that by this time next year, I wanted Braxton walking completely on his own.  The PT had recommended an assistive device for long distances such as walking to the lunch room, library, outside, etc, and while I can understand the need, I don’t want to encourage the use of a walker when Braxton is so close to walking independently.

Braxton also qualified for Speech on a more intensive basis. Speech will provided at 60 minutes each week, so he will have speech support almost daily.  His speech therapist will also work with the Assistive Technology specialist to implement a communication device system at school.  They are aware of what we have been using at home and so far have been supportive of continuing to use that system.

He will continue with Vision and Hearing therapy on a consult basis only.  This means the AI and VI teachers will come in to the class to ensure the teacher has the tools she needs to help Braxton learn in class.  The VI teacher recommended that Braxton use a visual schedule, picture cards, and use of a black background to help with visually complex items.  I also asked about the use of an FM system with Braxton’s hearing aids.  An FM system allows a receiver to be attached to Braxton’s hearing aids and the teacher would wear a microphone.  This would make it as though the teacher is speaking directly to Braxton and he would hear her the same way we hear music in headphones.  This is typically used in later grades, but I think it would be helpful for Braxton because he does get easily distracted and needs voices to be in short range to pay attention to them.  The team said they would trial an FM system, but wanted to see how he performed without one first.

The whole team agreed that “Total Communication” is best for Braxton.  Total Communication is the use of many different methods of communication to work with Braxton.  So, we will be using sign language, picture cards, AAC, voice, and gestures. This will help promote language and encourages the use of many systems so Braxton can decide which is best for him to communicate with his teachers.

It has been a long, arduous process, but I am, so far, pleased with the outcome and look forward to the fall session. We will be meeting again before school starts because we are waiting on a couple physician reports from our summer follow-ups and will need to take those reports in to consideration before school starts.  And to think, this is only the BEGINNING of our Special Education Journey.

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Braxton’s Story featured on KVUE

We visited with KVUE to discuss Braxton’s diagnostic journey and the upcoming documentary.

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We Should Have Known Sooner

SearchingEvery year, when Braxton’s birthday rolls around, I am full of emotions as I look back on our journey and see how far we’ve come.  This year, that is paired with all of our annual appointments with doctors we haven’t seen in 6 months to a year.  Some still didn’t know Braxton had finally received a diagnosis.

 

 

Doctor: “Did you all ever receive any additional information about a possible diagnosis?”

Me: “Oh, yes we did.  Braxton has Rubinstein-Taybi Syndrome.” 

Doctor: “Oh yea? I have a few patients with that.”

Me: “Umm..that you see currently?”

Doctor: “Absolutely.”

That has been the conversation at more appointments recently than I even want to tell you.  The doctor then proceeds to tell me about all of the things kids with RTS are at risk for from their specialty standpoint.  Outwardly, I am thankful they have heard of RTS and know what to expect.  Inwardly, I’m  furious and screaming.  You knew about RTS? You KNEW this whole time? The WHOLE TIME?! Why on Earth wouldn’t you have said anything before? Did you ever even look at my child!? Just a series of completely flabbergasted questions.

Almost ALL of our specialists very nonchalantly have said they are familiar with RTS and spout off all of these things about other patients.  Our anesthesiologist at Braxton’s tonsillectomy guessed RTS just from looking at the symptoms on Braxton’s chart.  Huh? So why did it take us 2 years to find out!?

I wish I knew why it took so long.  I guess, we know Braxton doesn’t fit “in the box” exactly, but is it really necessary for a child to check off every symptom before a doctor comes to a diagnosis? There was always enough information to make the diagnosis, but it was overlooked.  Even when it was brought directly to their attention, the doctor said “Welllll….he doesn’t really fit because x, y, and z” So because Braxton did not check off a few specific symptoms, we were left in the dark.

Yes, I am thankful and relieved to finally have an answer NOW, but do you know how nice it would have been to know earlier? It would have saved so much fear and heartache.  Sleepless nights where I sat up and watched Braxton sleep, just hoping that he wouldn’t stop breathing or be taken away from us as the doctor’s predicted.  Tireless hours of researching and contacting other parents.  Appointment after appointment where doctors just scratched their head and said come back in 6 months, we’ll see what’s developed.  The NICU doctor didn’t give my kid a month to live and you want me to wait six? What if we don’t have that long?

Braxton looks just like so many other kids with RTS, why didn’t anyone notice it before? Especially when they are currently seeing patients with the same diagnosis.  All RTS kiddos look like they could be related.  Sure, you see some of their parents in them, but their resemblance to one another is striking.

To me, there is no reason why another doctor could not have even hinted at this diagnosis. They spout off statistics and potential problems on a whim, so it’s not like RTS is so rare and unknown to them that they could not have suspected it enough to tell me.  This is the part that is so frustrating to me about our medical system.  Don’t get me wrong, I really love all of our doctors and they have done so much for us, but they’ve also let us down.  When yet another doctor tells me about the MULTIPLE patients they see, I can’t help but be frustrated and upset.

I think that is another reason why I have been so passionate about this Undiagnosed documentary.  Knowing that there are other patients out there like us, who end up being diagnosed with something that is uncommon, but something that there is enough information available for that shouldn’t require such a prolonged diagnostic journey (be it 2 years or 7).  With more awareness and a greater understanding of what life is like, the fears we face, and the struggles we have, maybe the medical community would move toward better networking and the development of an Undiagnosed Disease Registry.  These are things that could save a child’s life and spare a parent the fear of the uncertainty the future might hold, yet they don’t exist.

I am so hopeful for this film and hope that it comes to fruition. And while I don’t think our journey should have taken so long, I’m thankful for the road we have walked because now I can help others and be a voice for them.  Perhaps, like everything in our life, our journey was prolonged for a purpose. I hope that I am fulfilling that purpose through sharing our story and being an advocate for my son and the countless families who have walked this path before me and those who will follow.

 

 

 

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