Thankful for Team Braxton

Braxta Bear“It takes a village to raise a child” has completely taken on new meaning since Braxton came along.  From day one, we had a small army of people caring for him and working to keep him alive.  Two years later, we don’t have as many people on the “front line” so to speak, but they all stand ready when we need them.

Although there hasn’t really been one standout doctor for us, we are appreciative of them all.  I have heard some real horror stories about families dealing with some not-so-great doctors, and I thank my lucky stars we have only had one really bad experience.  While we have dealt with doctors offices not returning calls promptly, for the most part, they have all been extremely helpful.  I’m thankful our doctors have been proactive in caring for Braxton.  There were times that a test may not have been necessary just yet, but our doctor ordered it anyway.  For example, after receiving our diagnosis of Rubinstein-Taybi syndrome, we knew many kids were at risk for a tethered spinal cord (a condition where the tissue in the spinal column is abnormal which can affect gross motor skills and many other things).  I called our orthopedic doctor to relay this information and ask if it might be worth it to go ahead and get an MRI of the entire spine.  Although we didn’t have a lot of clinical evidence, our doctor wrote the order and Braxton had all 3 MRIs done.  Luckily, the MRIs came back unremarkable only noting very mild scoliosis.  Our pediatrician has also been very helpful and has pretty much ordered everything I brought to her attention or submitted referrals “just in case.”  We are thankful to all of the doctors on our team who have helped us along this journey.

Braxton in PTNow our therapists, are another story.  Each and every one of them is exemplary.  They have all at some point or another, gone above and beyond all expectations.  They love Braxton so much and it’s obvious that he loves them too.  Braxton has had Physical therapy and Speech therapy pretty much since the day we brought him home from the hospital.  He started Occupational therapy some time after, and is doing so well with her too.  We often talk about how far Braxton has come and all that he has accomplished under their direction is truly a miracle.  I love when our PT is visibly excited because Braxton stood without assistance for all of 2 seconds.  He really “gets it” and his excitement is truly genuine.  He is so kind and so gentle, but will totally roughhouse with Braxton when Brax is feeling feisty.  There is an unspeakable bond there and it’s beautiful.

Our PT supervisor has also been phenomenal.  She has taught me so much and is such a wonderful PT Supadvocate for Braxton and children just like him.  She sees so much potential in him that she made it a point to personally make some calls and make sure Braxton had a space at his current daycare.  We were worried at first, but we see exactly why she recommended this move and are so thankful.  She’s really been a guiding light throughout this journey and I thank God every day for bringing her in to our life.

IMG_0398Our Speech therapist has been so patient and determined when it comes to feeding Braxton.  Despite the huge setback and trying to overcome this oral aversion, I see just how hard she is working to help us and love that she is always excited when we see any progress.  She is now working with Braxton on using an iPad communication app to promote choice making, and Braxton is doing so awesome with it.  She is always keeping me updated on his progress and even calls just to check on him when she knows he’s been sick.  I so value her expertise and understanding.

Our Occupational therapist has been really great with helping Braxton really hone in on his fine motor skills.  His progress here is much slower than in other areas, but it’s progress and she’s always so proud of him.  Our daycare teacher made the comment that she loves that our OT doesn’t talk AT Braxton, she talks WITH him.  Braxton isn’t able to respond, but she talks to him as if he is going to talk back to her.  She, like all of our therapists, assume competence.  They don’t discount Braxton because of what he “might” not do, they all operate on the thought that he CAN and WILL do it, it just may take a little longer than normal.

We also receive hearing and vision therapy through our local school district.  They have both been awesome! It’s obvious that they care about Braxton and his progress and continually have “outside the box” ideas on how to promote his skills.  Braxton has especially taken to our hearing teacher as she is so kind hearted and fun to be around.  She has been helping us all learn sign language so that we can communicate with our sweet boy.

We are SO incredibly thankful for this simply amazing team of therapists.

We are thankful to the fans, supporters, encouragers, readers, kind hearted strangers…just everyone who has taken the time to read a blog post (or all of them!), visit the facebook page, like a post, share our story, share in our joy when Braxton reaches a milestone, say a prayer, or simply offer words of encouragement.  This outpouring of love really gets me through the hard days when I’m feeling lonely or isolated.  I can just look at our blog or at our facebook page and see so much love and so many people who do really understand and are hoping for the best.  This virtual support system is so needed and I’m thankful to have all of you on this journey with us.

We are also thankful to our physical support team; our family and friends.  We have had the pleasure of meeting some really great people on this journey who are walking their own path in this special needs world and their support and advice is much appreciated.  We all rally with each other and offer support and encouragement on this bumpy road.  Our family of course has been very supportive and help us whenever we need them.  Having all of these people to lean on during the hard times or cheer with us through the good times has been incredible.

We are so thankful for everyone in our life who has in some way or another contributed in the care of Braxton.  Our little village has helped this kid move mountains.  We didn’t know what to expect, but it’s obvious that a little bit of love and encouragement can go a long way.

Can’t think of anything more to say, other than: Thank you, Team Braxton. Just, thank you.

2 Comments

Filed under Family, Kids and Family, Life, Special Needs Child

2 responses to “Thankful for Team Braxton

  1. I am so glad that Braxton has an army of loving, thoughtful people. I wish you all a very Happy Thanksgiving. May God bless and keep you all forever.
    P.S. Please hug and kiss Braxton for me. Love, Monica

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s