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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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Braxton’s Birthday Project

Can you believe Braxton is going to be 3 years old already?! Time has flown by and our little man has certainly come a long way!

Every year, we have some very nice people who contact us via our blog or Facebook to ask for an address to send cards or gifts to Braxton on his Birthday or for Holidays.  While we are very appreciative of such kindness, this year, we’d rather you do something a little different to honor Braxton on his birthday.  Without further ado, here is this year’s project for Braxton’s 3rd Birthday, which is on June 24th!

Braxton's Birthday Mission

 

Braxton’s birthday theme this year is Superheroes and with that in mind, you have all just been given a Top Secret Mission.  Only, it’s not so secret! We encourage you to share this far and wide to spread some kindness and tap in to your own super powers.

This year, if you are not local, instead of sending Braxton a card or gift, we are asking that you make a donation in his honor to one of the organizations who has touched our life deeply. Any amount is appreciated! Even $5 can go a long way.  If everyone gives a little, it adds up to a lot that these organizations can do for their community.  These are the organizations we’ve chosen:

U.R. Our Hope

U.R. Our Hope – U.R. Our Hope is a registered 501 (c)(3) non-profit based in Austin, TX that assists families on the journey to finding a diagnosis or helps them navigate the healthcare system with a rare diagnosis.  They provide meals for families during hospitalizations, help facilitate research and medical referrals, provide gift cards to families traveling for medical appointments, and are hoping to raise money to gift Whole Exome Sequencing to families still searching for a diagnosis.  U.R. Our Hope was instrumental in not only helping us find a diagnosis, but helping us connect with other families.  That face-to-face support was exactly what I needed to cope and empowered me to be the mom you all admire now.  I was very scared and alone at the beginning of this journey, but with the help of U.R. Our Hope I found my footing and have now helped others walk the path as well. I’ve also been honored to be a member of the board of directors for the past year. Although we have now found a diagnosis, we are forever indebted to U.R. Our Hope and hope you will consider supporting them as they have helped us.

Undiagnosed Documentary

Undiagnosed: Medical Refugees – This is the documentary we were honored to be a part of this year.  We were able to share our diagnostic journey with the team to help others understand why finding a diagnosis is so important.  Countless families are struggling to find a diagnosis and sadly, some have lost their children without ever knowing the reason.  Our journey was MUCH shorter than average and I’m so grateful for the help we’ve had along the way.  This documentary would be so revolutionary and change the way medicine is practiced today.  A donation to the film would go toward helping them complete the project so that the world can learn what we have experienced firsthand.

Special Friends Foundation

Special Friends Foundation – Special Friends is also a registered 501 (c)(3) organization who serves families with Rubinstein-Taybi Syndrome, which is Braxton’s diagnosis.  Special Friends provides financial assistance with medical bills, uncovered medical expenses, special therapies, augmentative communication and so much more.  A donation to them would help the fellow members of our RTS family.

Tinysuperheroes

Tinysuperheroes – This extraordinary organization provides capes for children fighting big battles. Capes are sent to children battling life threatening illnesses, lifelong disabilities, and other chronic medical conditions.  Parents of children with special needs already see their children as superheroes and a cape shows the rest of the world just how strong our kids are.  Braxton received his cape last year and has seen him through surgeries and doctors appointments.  You can empower a Tinysuperhero for just $35! There are so many waiting to receive their cape.

Sammy’s House Austin

Sammy’s House Austin – Last, but certainly not least, is Braxton’s amazing daycare.  Sammy’s House is also a registered 501 (c)(3) non-profit organization.  They provide childcare services for children who are medically complex.  When our daycare closed last August, I could not find a provider who would take Braxton and that I trusted with his medical care.  Sammy’s was a godsend.  Their director lost a child to Down Syndrome many years ago and he was the inspiration behind Sammy’s House.  She, too, could not find a provider she could trust or who had enough experience to work with her medically complex child, so she started a center all on her own.  Sammy’s operates entirely off of donations and serves children with a variety of disabilities.  When Braxton started last August he was crawling and pulling up to stand, but had minimal cruising and no desire to walk.  In 9 months, Braxton has made tremendous progress! He is walking with minimal assistance, cruising longer distances, eating by mouth, understanding language a lot more, and just overall growing every day.  The staff is constantly pushing the kids to unlock their full potential and have done wonders for Braxton.  A donation to this organization ensures that other kids can reach their potential as Braxton has and continues to do.

 

 

We appreciate all of you for loving and supporting Braxton along this journey.  While we love the cards and gifts, Braxton already has so much and we would love to spread the generosity.  These organizations have all touched our life in one way or another and it would mean the world to us if you could spare a few dollars to one, two or all of them! I don’t need proof of your kindness, but when you donate to any of the organizations, please make sure to leave a note that your donation is in honor of Braxton so that they know who sent you.

We hope you will join in this mission and open your hearts!

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Braxton’s 2nd Birthday

Happy 2nd Birthday, Braxton!

Happy 2nd Birthday, Braxton!

Braxton will be 2 years old tomorrow! Today, we had a few friends and family over to celebrate with us. He wasn’t quite himself today though. 😦 I’m not sure if he is coming down with something, or if he was just overwhelmed with everyone. Nevertheless, we had a nice day. We set up an inflatable pool for Aileen and some of her friends. Braxton slept through the first part of his party or he would have been in the pool too! When he finally woke up we did cake and presents. He got lots of goodies!

I still can’t believe Braxton is 2 years old! The past 2 years have been incredible and crazy all at the same time. 2 years ago we were told our son wouldn’t live for 2 weeks and we had no idea what the future held for him and for us. Now, we have a diagnosis, a better idea of what his future might hold, and so much more hope. So many things we thought he would never do, we now see him trying to do and know, that in time, he WILL do them.

At 2 years old, Braxton is developmentally about 10-11 months. He definitely has crawling down! He is all over the place. He is pulling to stand pretty much every chance he gets and will even hold on with one hand, or bend and stoop from standing and get himself back up. If we hold his hands he will take a few steps before he drops down and crawls off instead. He is cruising furniture a little bit and able to transition from one object to another while standing without losing balance. Braxton is still babbling and making a lot of sounds. Just because the research says he won’t talk, doesn’t mean we will stop trying to get him to talk. We talk to Braxton ALL the time, sign to him the signs that we know, sing to him, give him toys that play music and he is responsive! Braxton is even doing really well with the iPad! He used to bang his head on it or try and eat it, and now he is finally using his hands instead of his head or mouth. This is great since we will be considering a communication device for him. It’s so nice to see everything clicking for him.

Happy 2nd birthday, little man! Keep on writing your amazing story, I know you will continue to surprise us all.

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