Tag Archives: goals

Hello 2014, Goodbye 2013

It’s amazing the difference a year can make.  Looking back on our posts from last year and all the photos, it seems as though I have a completely different child to share with you all this year.  2013 has been full of so many wonderful achievements!!

I looked back at the goals I wrote in my first post of 2013 and I’m happy to report, that Braxton has knocked most of them out of the park!

  • Talking – Well, this one he did not accomplish, but we know speech is going to be an area that needs a lot of work. Braxton is babbling a little more than he was last year, but he still does not have any words.  We have been working with our speech therapist on using an iPad for choice making as a precursor to using it for his communication device as he gets older.  We have also been learning sign language and although Braxton has not learned any signs, we have all made pretty good progress and have a good foundation of sign language.
  • Eating – Seemingly overnight, Braxton has emphatically checked this one off the list.  Nearly 15 months in the battle of overcoming a severe oral aversion, Braxton is finally eating by mouth AND he enjoys it! He is currently eating 3 times a day anywhere from 4-8 ounces each time.  Right now, his favorite food is cinnamon applesauce! I have been able to get him to try new foods by mixing in a little applesauce or sprinkling cinnamon.  We are hopeful that he will continue to make great progress.

    Yummy in my tummy!

    Yummy in my tummy!

  • Interactive Play – Wow.  Just spend 15 minutes with Braxton and you wouldn’t even believe this is a goal we had for him! He LOVES to play with us now and is VERY interactive.  He plays with purpose and initiates new games and the games he likes.  He will reach out for my hands to ask me to play “Row, Row, Row Your Boat” with him.  If we are playing with a toy and I take it away, he will gesture to say that he wasn’t done playing.  He laughs during play now and when you do something funny.  He will even come get us from across the room just to give us a hug or ask to be held for a moment.  Braxton gives the best hugs.
    Smile
  • Walking – We are SO close!! In October, Braxton made significant strides in assisted walking.  We can hold one hand and he will walk right next to us.  Recently, he took his first independent steps in physical therapy!! He will consistently take 3-5 steps on his own to get from one person to another.  He even took on the stairs this year! He has climbed them a few times successfully with some help.  We are working on independent standing now and his therapist is certain once we get that down that Braxton will take off.  Braxton will stand on his own for about 5-10 seconds before he grabs on to something or falls down.  He is doing AMAZING with balancing himself and trying to maintain balance as he stands on his own.  He is working so hard and I know that he will walk on his own very soon.
    Braxton Walking

 

I’ll say that Braxton has certainly accomplished so much and he continues to make steady progress.  There was a lot of change this year and Braxton handled it all so well.

Braxton started a new daycare that has been instrumental in helping him achieve so many new milestones.  We were so worried about moving him to a new school, but it has proven to be the best choice for him.  I love his new teachers and how excited they are for Braxton to succeed.  We have been so blessed with such a great team of teachers and therapists.

2013 was also the year we finally got a diagnosis. Getting a diagnosis brought such a relief to all of us.  I will never stop worrying, but I worry a lot less now that I have a name for what is going on with Braxton.  We have been very fortunate to ‘meet’ so many people who have a child who shares Braxton’s diagnosis.  We have a phenomenal virtual support team in place and I love how supportive and encouraging everyone is.  We love our RTS family and wish them all the best in this new year.  This year, I hope we can attend one of the RTS reunions to meet some of these wonderful people in person.

Medically, 2013 was the year everything finally settled down for us.  We are down to seeing most of our specialists every 6 months or once year which is a huge change from 4-5 appointments a month! Now that we have a diagnosis, our doctors have a better idea of what to look out for and we have a better plan in place for him. Braxton is medically stable (*knock on wood*) and we did not have any major illnesses this year.  This cold and flu season is especially brutal so I’m hoping we can manage to keep Braxton well and out of the hospital. He is still seeing all of his therapists twice a week which makes 6 hours of therapy every week.  He also sees Vision and Hearing teachers from the school district who have been very helpful.

2013 was a huge year for me finding the courage to actually speak up about our story. I started the blog in 2012 and in 2013 I had the great joy of visiting our local news station to advocate for Feeding Tube Awareness Week, visited a radio show to share our diagnostic journey, spoke on a parent panel at the Texas Parent to Parent Conference, filmed with a documentary crew to shed light on the Undiagnosed community, and continue using my blog as a way to share our story and advocate for children with special needs.  I’ve also been fortunate to sit on the board for U.R. Our Hope to help others on a diagnostic journey find the answers they are longing for.  My life has found new purpose through what most would consider dire circumstances.  I didn’t expect this life, but I have learned to make the most of it and am proudly helping others.  My life is full.  I am happy. I am blessed.

2013 has been very good to us and I’m very excited to see what 2014 holds!

In 2014, there will be even more changes for Braxton and I know he will be just fine.  Braxton turns 3 in June which makes him eligible for Preschool for Children with Disabilities.  This means Braxton can attend our local elementary school this August.  Where we live, the program is only half a day.  Now that I am working from home, it will be much easier to coordinate the schedule without worrying about after school care since finding daycare proved to be so difficult this year.  I’m still uncertain if I will enroll him in school or let him go in to the preschool program at his daycare instead.  I do know I will be meeting with the Early Childhood Intervention coordinator in March to set a meeting with the school to discuss everything, so stay tuned for more!

In 2014, Braxton WILL walk! No doubt about that.  He is so close and working so hard.  I know it’s only a matter of time.  Once he is walking, I’m sure all the fun really begins.  It won’t be long before he is running and jumping and climbing and really in to everything.  I cannot wait!

In 2014, Braxton will begin self-feeding.  His Occupational Therapist is working on getting Braxton to feed himself and he will successfully bring a spoonful of food to his mouth at least 10 times in therapy.  We’re also hoping Braxton will expand the variety of foods he eats.  He is still eating pureed foods, so by the end of the year, it would be great to see him eating some table food.

I know that we will see some pretty incredible things from Braxton this year.  I’m so glad that we didn’t listen to the doctors who told us he wouldn’t do much of anything.  He sure has proved them wrong and continues to do so every day.  It has been quite the rollercoaster ride, but I wouldn’t change it for anything.  Braxton inspires us to be better parents, live life more joyfully, and to slow down and simply enjoy the ride.

Cheers to 2014!!

 

// Some fun blog stats:

  • This year we surpassed 33,000 views!!

Here are some of our top posts!

I’m excited to continue sharing our story with you! As always, thank you for reading and sharing our story.

2 Comments

Filed under Life, Special Needs Child

My Hopes for 2013

Hello 2013!

Hello 2013!

Hello, 2013!! I really dislike making resolutions…mostly because I’m a hard critic on myself and if I fall short I just beat myself up over it. So, instead of setting myself up for disappointment I like to set small, attainable goals to reach before the end of the year.  I don’t usually share them, but this year they mostly deal with my kids and my parenting decisions so I decided to share them with you all.

Goals for Braxton – he doesn’t know it yet, but I have big plans for him this year! 😉 

  • Talking – whether it’s actual speech or simple sign language, I hope to get Braxton communicating with us by the end of the year.  Right now most of his babble has no meaning to him, and although he often says “mama” or “dada” it would be nice for those sounds to have actual meaning and be more than just sounds. Hopefully, we can get him saying at least 50 words by the end of the year. [Speaking OR signing]
  • Eating – Having the G-tube taken out by the end of the year is a long shot, but I hope to have Braxton at least eating MOST of his food and drinking from a cup before the year is over.  I think that is more than attainable.
  • Interactive Play – Braxton loves to hear “Row, Row, Row Your Boat” as we gently rock him back and forth, but it would be nice for him to initiate the movement more on his own.  Even playing patty cake with him would be more fun if he was able to clap his hands together throughout the song.  Hopefully, by the end of the year we’ll see more interaction between him and us.
  • Walking! – This is totally attainable!! I know he wants to so badly, but he’s not there just yet.  Braxton is pulling up to stand, and Physical Therapy is currently working on cruising and I’ve caught him take a few side steps on his own.  This is one determined little boy, so I’m certain he’ll be walking and running before the year is over.
  • Through these goals, he will accomplish a range of fine motor and cognitive skills as he works toward these, and I can’t wait to see his progress.  There are lots of little goals we want to meet, and I know he will soon!

Goals for Aileen

  • This HAS to be the year she sleeps in her own bed! She usually only sleeps with me when Joseph is gone, but it’s time for her to be a big girl.  I know there will come a day when she wants nothing to do with me, and that’s why I’ve let her sleep with me so long, but I want my bed back! Maybe a little selfish, but I hope this helps her find more strength and independence.  She tends to be scared easily at times and teaching her to be strong enough to sleep in her own bed I think will help her in the long run.
  • Handwriting! – This is something I HAVE to help her with.  Compared to other kids in her class, her handwriting is one of the worst! 😦 She loves to read and tell stories, so we’ll work on handwriting by having her WRITE her stories and practice in fun ways instead of ways that seem like more work.
  • Reading – Aileen LOVES to read, so I just want to strengthen her skills and maybe have her work her way up to reading Braxton a bedtime story daily.
  • Behavior – Aileen is pretty good, but she still has outbursts and tantrums that we’ve got to get under control.  I also have to stick with it! I get a little lax, so I need to find something that I can keep up and that encourages her good behavior.
  • She’s such a bright little girl and is on the right track in so many ways, I just hope to help her continue to learn and grow.

Parenting Goals

  • We all try to do our best to be the parents our children need, but by our own standards, sometimes we fall short.  I feel that I’m great with keeping my kids on schedules and doing all the things we HAVE to do, but I know I can work a little harder at fostering better relationships with my kids.  
  • Get Unplugged – Technology is great, but it can also be detrimental in so many ways.  I’m still a fairly young parent and my generation is heavily plugged in to technology and social media, and I will admit that I’m guilty of sometimes being more plugged in to my tech gadgets than my kids.  This year I hope to “unplug” and spend more quality time with my kids where they have my undivided attention.
  • Get Active – I don’t mean that I’m going to run out and join a gym, but the whole family can stand to turn off the TV and get outside a little more.  This year I hope to finally teach Aileen to really ride a bike (without training wheels) and do more with her outside and show her there is more to life than Disney and Nickelodeon.  If I could get her to turn off the TV completely, that would be phenomenal!! [Highly unlikely, but a mom can dream 😉 ]
  • Distribute my time better- With all of the issues Braxton has going on, I’ve often found myself more involved in his life and less in Aileen’s.  She had me all to herself for 5 years, so having to share me has been difficult, and I realize the importance of the time she’s lost.  I hope to find a better balance in being a parent of 2 kids.  I hope to spend equal time with them and even possibly take Aileen out more for a little one-on-one time. I think she’d love to do “big girl” things without having little brother come along.
  • I have some more personal goals I’d like to work on, but for now this is what I’m willing to share.

Instead of “resolving” to do all of the above, I’ll simply say that I HOPE to accomplish most, if not all, of these goals in 2013, and if I don’t, I promise not to criticize myself.  They are all attainable, so there are no excuses.

Cheers, to goal setting in 2013!

3 Comments

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