Tag Archives: progress

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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Typical, Yet Far From Typical

Big Good Morning Smile from Brax

Big Good Morning Smile from Brax

Here lately, Braxton has made some significant progress.  As he is getting older, he is “catching up” on some things, yet far behind in others.  I catch myself thinking, yup that’s what a toddler is SUPPOSED to be doing.  Or saying things like, boy it’s like we have a real toddler around here! (Obviously, he’s real, but he’s not at all been a typical toddler until recently) Braxton will be 2 years old next month (I can’t believe it!), but developmentally, he is still at about 10-11 months I’d say.  For instance, he is crawling fantastically and pulling up to stand and trying to cruise, which is typical for a 9 – 10 month old.  Once he really starts walking, I’m certain he will make so much more progress.  He’s getting pretty good. Here he is during a Physical therapy session doing some assisted walking…he took 30 steps while I was there for the tail end of the session.

Toys all around him.

Toys all around him.

Braxton is also doing really great with exploring his environment.  One minute he’s at the patio door and the next he’s in his therapy room with all the toys in the middle of the floor.  Yup, typical toddler leaving a path of destruction behind him.  For a long time, Braxton just sat next to us, slept, and pretty much did nothing. We’d play with him and there was no registered emotion.  Now, I walk in to a room and he’s pulled toys off the shelf, emptied toy bins, and crawling over to another toy and playing all on his own.  When we sit and play with him, he is actually quite interactive and will laugh and smile the whole time.  Especially when sister plays with him. He likes to pretend to knock her over and when she exaggerates the fall, he thinks it’s hilarious.  The sound of laughter fills my home and heart.

Are you talking to me?

Are you talking to me?

Braxton now also knows his name.  Just one other thing we don’t realize actually has to be learned.  I would call him all day long and get nothing in return. But a toy goes off and his head whips around. At first, I figured he was being a typical toddler by ignoring mom and only paying attention to cool toys, but it’s just taken some time for him to learn we’re talking to him and not the wall.  In the past couple weeks, I have called his name and he turns around with a big smile on his face. Or if he’s across the room, he turns around, sees me, smiles real big, and crawls as fast as he can over to me.  It’s the sweetest thing, but it’s been a long time coming.  I never thought it’d be almost 2 years before he understood much of anything.  He knows his name now, and that’s huge.

Another typical toddler thing he’s doing is dropping things on purpose and then crying dramatically to sucker mom into picking him up.  I have sat and watched him literally stick his pacifier over the edge of the play pen, swing it around, and then throw it.  He then stares at it, and then goes in to full on crocodile tears and drops to the floor just to make sure mom knows he’s really upset.  I just laugh.


Braxton is doing so well and I just love watching him develop.  Each and every accomplishment is celebrated in our home.  I am often so overwhelmed with joy that I just cry thinking of all the things he is doing that no one ever thought he’d do.  I’ve read the reports, I’ve talked to our therapists..they were all really worried at first, and so were we. And now, we all rejoice with his progress.  He never ceases to amaze us with his courage and determination.  Some days, in some moments, he’s just like any other typical toddler, although in reality he is behind and  so far from typical.  One thing is for sure, he is one extraordinary little boy who is going to continue to defy the odds and surprise us all.

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Braxton is 20 months!

It’s been pretty quiet around here appointment wise (thankfully), so quiet I didn’t even change my fridge calendar! Perhaps my own celebration of not having to keep up with appointment after appointment.  The calendar may not have changed, but another month has certainly passed.  I cannot believe that Braxton is now 2o months old. 20 months! Oh. My. Goodness! I already need to start planning his 2nd birthday! He’s mobile this year, so something like a bounce house is actually possible! We had a small party at home for him last year and since he can’t eat, we let him play with his cake.  He totally destroyed it, and he had so much fun.  I definitely think it’s something we will do again this year. 🙂

Demolished the cake!

Demolished the cake!

At 20 months, Braxton is crawling everywhere…and I do mean everywhere!  One minute he is in the living room, the next he is in the kitchen staring out the patio window.  I block him from the patio and he’s now discovered there is another window in the front room, so he goes there instead.  Smart kiddo!

Braxton also thinks he is a woodchuck.  He chews on EVERYTHING!! Poor kiddo has teeth coming in veryyy slowly, so naturally he is looking for relief.  He chews on anything he can get his mouth on (except for teething rings – he’ll chew anything but), so we go through lots of 409 and Lysol making sure everything is clean so if he happens to “taste” it, at least it’s not dirty or full of germs.  I think this is definitely something to do with sensory seeking, but I’m not really sure how that fits in to everything or what it really means for him.  I just know it’s a way for him to “know” and “discover” his surroundings.

Walking is not far away! I’m hopeful that Braxton will be walking by his 2nd birthday…that’s our goal.  He is doing better about cruising around the table.  He can easily get himself up to a standing position and back down.  He’s even getting brave and letting go and holding on with one hand or barely at all.  He will walk while holding our hands too.  We finally bought him some shoes too! 🙂

Exhausted after a long day of practicing walking...check out those sweet kicks! ;)

Exhausted after a long day of practicing walking…check out those sweet kicks! 😉

Eating is still a work in progress.  We’ve had very little success, but he is at least tolerating it now instead of completely refusing everything we offer him.  With his G-Tube he is still gaining weight appropriately, so we will just continue to work with him on eating.  He WILL get there eventually, I know he will!

There are also LOTS of new sounds! Braxton’s babbling has taken off.  He had ‘ma’ ‘ba’ ‘da’ ‘na’ down and I’ve now heard some ‘ga’ ‘la’ ‘ya’ ‘ti’ ‘ah’ sounds.  My day with him sounds something like, “babamamama dadada balababa ga ti ti ti yayayaya ahhhhh *loud shriek* bababbaba” We talk to him all day and repeat the sounds to him, make sure we name everything we do and show him.  We’re even learning some sign language and trying to teach him so that hopefully he picks up one or the other just so he can communicate with us.

He’s also much more playful now!  He is actively engaged, focused, and truly entertained.  We can sit and roll a ball with him for about 20 minutes before he loses interest.  He is practicing some excellent turn-taking skills (which are a pre-cursor to language) and so many other little things that are so important to his overall development.  I’m really excited every day for all the new things he is learning.   Here is Braxton playing catch with his Physical Therapist and Speech Therapist. 🙂

 

Look forward to all of the awesome things he’ll be doing next month!! 🙂 🙂 🙂

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Moving Right Along

Have I mentioned how amazing Braxton is?! OK, sure, I’m just a tad biased, but this little boy continues to amaze us all each and every day.  Since we’ve had his hearing aids back from repair, he has been so much more vocal! He’s just “talking” up a storm now! It’s the cutest thing.  All of our therapies alternate between seeing him at home and seeing him at daycare.  I’m so thankful that they have been very flexible with us, and even more grateful for their continued perseverance with Braxton.  He has truly turned a corner and taken off in a way I never thought possible.

Since I work during the day, I communicate with all of the therapists via e-mail, texts and phone calls. Yay for modern technology! When Joseph is home, he fills me in on how the visits went, but I still stay in close contact with everyone.  I want to be sure Braxton stays on track and that we are doing all that we can at home to ensure his success.  They can’t accomplish all the goals simply by seeing him twice a week, there is lots of practicing and reinforcing throughout the week.  I’m glad his daycare is so instrumental in this as well.  Everyone in our lives has done all they can to help Braxton succeed, and he’s doing just that.

This week, his Occupational Therapist sent me a message mid-session because she was so excited that Braxton was playing with a toy piano using BOTH hands together and he even clapped a few times in a row without being prompted!! So AWESOME!! We’ve been working on clapping, bringing his hands together, trying to bring two toys together, and so far, he won’t do it.  We can prompt him or hold him at his elbows to make his hands clap and he laughs and laughs, but won’t do it on his own.  So for him to do it at all was a HUGE deal!

Today, his Speech Therapist called me after their session excited that he was very vocal with her today.  (It always happens that he shows off his vocal skills for everyone except the ONE person who NEEDS to see them…sheesh) But today, he talked to me in the car the ENTIRE way to daycare.  It’s about a 30 minute drive from home, so it was so nice to babble back and forth with him on the ride.  I was afraid he’d be all talked out for his session, but he wasn’t. 🙂 She told me that he talked almost the entire session for her.  He was very attentive to the books she had and since he was babbling “ba” over and over, they worked on the animal sound for Sheep.  It took a little bit for him to repeat it when prompted instead of saying it just because, but eventually he did it! A few weeks ago he even attempted to imitate a lion “roar” and our therapist sent me the pics above from that session! OH, and how could I forget! She said she walked in to daycare and he had his back to her so she called his name and he immediately turned around, recognized her voice, and smiled as he crawled over to her! At 19 months, Braxton still doesn’t really know his name or consistently turn to it when called, so moments like this are golden.

Our monthly supervisor visit for Physical Therapy is on Monday, and I look forward to a message from that visit too.  Braxton is quite the charmer when MEP comes to visit. hehe

Sometimes,  I feel guilty for working outside the home and not being instrumental in these sessions, but our therapists do such a wonderful job of keeping me in the loop and I do all I can to reinforce everything at home, so it’s like I’m not missing out at all. I love receiving pictures, texts and phone calls from everyone.   I’m grateful everyday knowing that we started therapies almost immediately once Braxton was home from the NICU. On paper, they all said the prognosis for Braxton seemed very bleak. Upon meeting him, they were all hopeful he could at least be helped. And now, they too are amazed by our little man and all of the progress that he’s made.  A teacher once told me, “The only limits you have, are the ones you put on yourself.” Braxton certainly seems to understand that his success is truly without limits.  I can’t wait to see what he’ll do next.

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Who Flipped the Switch?!

He loves playing with his sister now

He loves playing with his sister now

In just a couple of days, (Jan. 24th) we will officially have a 19 month old on our hands! Braxton continues to make significant progress in all areas, and we could not be more thrilled.  Braxton is truly starting to come into his own person.  This little boy has developed an entirely new personality, perhaps not completely new, but we are starting to see new traits.  He is quite the little jokester.  He is really starting to do stuff like drop things on purpose to see if we will pick it up, all the while looking and grinning at us like he knows exactly what he’s doing.  He’s also developed purposeful play.  He will crawl over to a toy with intent and actually sit and play with it for long periods of time before moving on to the next toy.  You can tell that he is very focused and concentrating on the fine/gross motor skills required for the task at hand.

At the end of November, we sent his hearing aids off to be repaired and we JUST got them back about 2 weeks ago and he is adjusting to them again, but we’re definitely seeing improvement.  He is making new sounds throughout the day (naturally, he says and does nothing when the Speech Therapist is here – jokester, I tell ya) and laughing so much.  It is such a joy to sit back and watch him play and crawl around like I never thought possible.  Every single day I see him do something new and I just want to cry because I’m so happy to see him developing despite the initial prognosis.  He’s even enjoying playing with his sister more.  Aileen really loves that she can play with him and get feedback from him.  He laughs and squeals and is just overjoyed by the interaction. It just melts my heart.

Developmentally, I’d say Braxton is more on track with a “typical” 9-10 month old who is actively crawling and playing and making attempts at standing/walking.  He still has no real speech.  He makes sounds and babbles a little bit, but no words yet.  I get to sit and make silly sounds back and forth with him and am just thrilled to see him carry on the turn taking as he should.  Not quite imitating yet, but natural turn taking seems to be kicking in.  We are trying to focus on more sign language and even though he hasn’t quite developed the coordination, I’m hoping that seeing the signs over and over will help him to eventually pick it up.

We’ve even seen more cognitive problem solving skills develop.  He is actually thinking about things and how to do things differently.  For example, I’ve had to section off the living room to keep him from going to the kitchen and staring out the patio window.  I set his playpen between the couch and the wall so he can’t pass through. Well, Braxton will often kneel and try to push the playpen out of the way so he can get through! If I leave even a small crack and he thinks he can get through he will squeeze himself in and push and push until he gets stuck or edges the playpen out of the way so he can get through. Absolutely amazing.

Focused on his Xylophone

Focused on his Xylophone

There are significant advancements being made here and I’m so grateful to see Braxton reaching milestones left and right. It’s literally like a light switch flipped on in his mind.  He may still be quite a bit behind, but you can’t rush perfection 😉 He will do it in his own time, in his own way.  Keep up the great work, little man! Mommy and Daddy could not be more proud.

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