Monthly Archives: November 2013

Braxton is BEY-AWESOME!

Braxton is awesome! He’s so awesome. He’s beyond awesome! He’s bey-awesome!

You might recognize that if you’ve seen “Bolt” 467423 times (but who’s counting) and remember Rhino saying that into the A/C vent. If not, let me refresh your memory ūüėČ

 

Braxton has been doing some really incredible things lately. I can’t even believe his awesomeness right now! ¬† As you know, Braxton has been making great progress walking as long as we hold one of his hands. ¬†He is getting much faster and able to maintain his balance much better. ¬†Well, on Wednesday, he was off of school so we had his Physical Therapy session here at home. Then, this happened….

Yes! Your eyes did not deceive you. Braxton took his FIRST independent steps in therapy. ¬†He took up to 5 steps at a time at least twice and then 2-3 steps each time after. ¬†It was pure coincidence at first. ¬†I was walking Brax to his therapist when I slowly let go and he kept walking!! We were both surprised and decided to test him and sure enough, another 2 steps. ¬†I made Aileen grab my phone and start recording. ¬†Braxton took small steps multiple times in therapy. It was so awesome to see and I’m so glad I caught it on video.

Happy ThanksgivingFor Thanksgiving, we visited Joseph’s parents and Braxton showed off his walking skills and even took a couple independent steps for his grandparents. ¬†He really enjoyed sitting on the front porch in a rocking chair slowly rocking himself in the cool breeze. ¬†A year ago he was only starting to crawl, so it was like a totally different child was visiting this time. ¬†Braxton enjoyed exploring his grandparent’s house and gave grandma and grandpa lots of love.

Friday, we drove back home because Braxton had a Physical Therapy session in the afternoon. ¬†He wasted no time showing us he was still working on walking. ¬†He took 6-7 independent steps TWICE!! The second time, he might have taken 2-3 more steps, but his therapist ran out of room to back up so Braxton just kneeled when he got to his therapist. Then, Braxton got a little diva-ish and decided he was ‘all done’ with therapy and refused to even stand. Little stinker!

His awesomeness did not end there. ¬†Tonight, he managed to walk up stairs with me! My back has been killing me all day, and I could barely bend over to pick him up, so we walked over to the stairs. ¬†As I started to try to pick him up, he picked up his little leg and placed it on the stair in front of him. ¬†In disbelief, I waited to see what he would do next and sure enough, he beared his weight and pulled on my hand to lift himself up. ¬†And without prompting, he repeated the action to go up the next step. ¬†I know that he isn’t technically ready for stairs and his PT might even discourage it a little, but Braxton definitely understood what he was doing and he honestly only need help to stay upright, and I used my leg as his backboard so he could push up and off of me as needed, but he did all the work. ¬†He even reached out to the handrail for balance and to pull himself up! I tried to get him to do it again so I could catch video, but he wasn’t feeling it. ¬†Nevertheless, he is making INCREDIBLE progress!! I am sooo excited!

Braxton is truly beyond awesome! He’s bey-awesome!! Look out world, here comes Braxton!

Braxton Walking

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

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.

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Thankful For the Hard Times

I know that sounds crazy, but think about it. How can you ever really know good times without ever experiencing the bad times? If you never experienced pain, sorrow, and hurt, you would never know to recognize good health, prosperity, and joy. ¬†Not to mention that learning to get through the hard times builds character and teaches you the courage and strength you possess. ¬†We have been dealt our share of hard times and I’m certain they are far from over, but instead of being angry about them, I’ve learned to be thankful.

So, wait. You’re thankful that your child has a genetic disorder? ¬†Well….yes and no.

BraxtonEvery mother of a child with special needs has wished their child’s syndrome away. ¬†No child should ever have to suffer or fight for life the way our children do. ¬†We learn to adapt, we step up and care for our children, wear the badge of “supermom” as both an accolade and a curse, and we love our children fiercely. ¬†The sad truth is that we can’t simply wish the syndrome away or hope for a magic cure. ¬†So in that respect, no, no I’m not thankful that Braxton has a syndrome. ¬†I’m not thankful that he has significant delays. I’m not thankful that he can’t verbalize how he feels, what he wants, or what he needs. ¬†I’m not thankful for the hours we spend in the doctor’s office, in therapy, or on the phone with insurance companies. ¬†No child and no family should ever have to do those things.

HOWEVER, I AM thankful for what my son’s syndrome has taught me. Thankful for what he has taught me about myself, life, parenting, and truly unconditional love. ¬†I’m thankful for the people we have met and the connections we have made. ¬†I’m thankful for the love and support we have found in the special needs community. ¬†I feel that I’m so much more thankful about everything than I would be if Braxton was ‘typical.’

The hard times have taught me patience. ¬†I’ve learned to give Braxton the time he needs to figure things out, and while watching him instead of rushing him I see the wonder in his eyes, the intent with which he tries to accomplish a task, and the pride he has in himself when he does it all on his own. ¬†I’ve learned to be more patient with others as well. ¬†I’ve not perfected this yet, but I do notice that I lose my temper far less than I did before Braxton. ¬†Sure, there are times that I just snap when I shouldn’t, but I recognize it and try to do better.

A single stepThe hard times have taught me gratitude. ¬†I’ve learned to truly appreciate the little things and recognize that it’s the little things that mean so much to us. ¬†I understand just how much work it takes for a child to learn to sit on their own, stand, roll over, pick up a cookie, put a toy in a bin, empty a toy box, wave – the list goes on. ¬†EVERYTHING my child has done, he had to work for. ¬†He had to be taught. ¬†Hours of therapy were spent teaching him to do things many kids simply figure out on their own. ¬†Braxton took THREE small bites of a cookie and I was so overly ecstatic and grateful for this incredible accomplishment. ¬†Something I would not have experienced if it were not for the hard times. ¬†I wouldn’t know THAT kind of joy and gratitude if Braxton was ‘typical.’

St. David's NICU ReunionThe hard times have brought my family closer together. ¬†Joseph and I learned to really work together to care for Braxton. ¬†Watching him hold Braxton, make him laugh, or simply watch him with pride has made me fall even more in love with him. ¬†There is just something about seeing the man you love be an incredible father. ¬†We have had our share of hard times, but we have come out stronger every time. ¬†Our immediate families have also been more involved and learned to care for Braxton and spend time with us whenever possible. ¬†Aileen has been an amazing big sister and now that Braxton is more mobile she is truly enjoying “showing him the ropes.” Seeing the two of them together warms my heart.

The hard times have taught me courage. ¬†Never in a million years did I think 1) that I would have a child with special needs and 2) that I would be able to share our experience in such a public fashion. ¬†I recognize the courage I had to build to be able to put our story out there for all of you to read. ¬†The courage it took to share our experience with media outlets. ¬†The courage it takes to stand in front of a room full of strangers telling our story hoping that even ONE person finds THEIR OWN courage to fight for what their child needs. The courage it takes to persistently call a doctor because you just KNOW something is not right and they aren’t listening. ¬†The courage to question a doctor and ask them to take a deeper look.

The hard times have taught me about faith. ¬†I’ve always held true to my faith and the values I learned growing up, but I took a step back some time ago. ¬†It’s been about a year now since I’ve gone back to Church and pulled my faith closer to me. ¬†I see the greater picture and I know the power of prayer. ¬†I know God and see Him at work in my life each and every day.

The hard times have led me to find my purpose. ¬†My life is not at all what I imagined for myself, but I know it’s exactly what I’m supposed to be doing. ¬†I KNOW that I’m supposed to be sharing my story with you and reaching out to others to walk with them on this journey. ¬†I can’t tell you the joy and gratitude I feel when another mom reaches out to me to say that one of our experiences helped her through an equally hard time. ¬†Or when a mom reaches out for help to find answers or asks where to turn and I’m able to answer her or direct her to the right place. ¬†The thanks she gives me for listening when no one else would makes me feel good about myself and makes me want to do more. ¬†I want to pay it forward for all the help I’ve had along the journey. ¬†I enjoy helping people. I enjoy listening to their stories and finding the similarities in our journey so that they don’t feel alone. ¬†I know that this isn’t what I had planned, but it’s where I belong.

The hard times have taken me through every emotion possible, but I’ve learned to stay strong and hold my head high. ¬†I’ve learned that it’s okay to grieve. ¬†It’s okay to cry, sometimes for no reason at all. ¬†I’ve learned that I’m stronger than I ever imagined.

I’m thankful that I’ve seen hard times because I now know a joy that I could have never experienced otherwise. ¬†Hard times are not the end of the world. ¬†They are opportunities to learn what you are made of and teach you to be thankful when the good times come your way.

Choose Joy Everyday

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