Happy New Year!

Hello everyone,

As I write this, we are only a few hours away from the end of 2014 and the beginning of 2015.  There have been times when this year dragged on, and now, looking back, it feels as though it flew by.  Kemett has done so well this year and come leaps and bounds from where he was a year ago.  This year, I never thought Kemett would roll, sit up, crawl, stand or cruise, and he has accomplished all of these!  I wasn’t sure he would get off of his ng-tube and eat real meals in his high chair at 12 months, but he did it and faster than we expected.  The little baby who wouldn’t babble said pumpkin in October!  The baby that would not cry, and if he did it wasn’t for long, can now cry with the best of them when he wants!  He has truly turned into an amazing toddler right before our eyes.

Kemett is 4 Months!

Kemett at 4 Months!

Kemett is 16 Months

Kemett is 16 Months

None of this was easy for him.  Kemett works harder than anyone I know, everyday.  He has SIX therapies a week- occupational, speech and physical.  And due to his low muscle tone, it takes him longer to complete a task because he has to think about each muscle he is going to use- but give him time to think it out and he can do it.  When he is around his peers, I can tell he wants to walk and run with them, and he does his best to keep up.

Kemett is so social and friendly.  He wants to say hi to every person we pass and may even try to give them a hug.  It makes hard days easier when you see his sweet smile followed by the best hug ever!

He is curious and interested in what is around him.  He is constantly analyzing and exploring.  He loves books and being read to each day.

Kemett keeps us busy with 13 doctors in three cities.  But these doctors have discovered things about Kemett this year that have made his health improve greatly- allergies and asthma at the top of that list.  His doctors are amazing, and I’m not sure what we’d do if they didn’t seem to care about Kemett as much as we do.

And because of all of these doctors and PWS, we traveled to Florida twice and to New York.  We love to travel and this helped us have family time this year that was much needed.

And as in true Demand style, he is finally dancing!  To just about anything, except his dad’s heavier rock.  Although, sometimes it looks like he is head banging, so we better watch out.  I think he will be a ballet dancer.  Although his muscle tone may be low, he is quite flexible and I’ve already seen him doing some arabesque’s.

Happy Holiday's!

Happy Holiday’s!

Hopes and Dreams for 2015

That Kemett will walk and begin to talk more.  I want him to continue to be his happy social self.   I know his life won’t get easier, but we are doing everything we can to make sure he has the best life possible and it’s as typical as we can make it.

I am going to Meal Plan, finally!  I will share throughout the year how things are going with that.  I also want to go outside more and take more walks with Kemett.  We spent way to much time indoors this year due to therapies and illness.  I think he and I are both ready to explore more.

Please continue along on this journey with us into 2015.  This blog will continue to be a place that will explain what is going on with Kemett.

HAPPY NEW YEAR!

Love,

The Demands

 

Kemett is 10 Months!

Happy July Everyone!

Kemett turned 10 months on June 25th!  He is doing great and has made big strides this past month.  Here is the update:

  • Kemett started babbling dadadada, mamama, nanana and is “talking” when he plays
  • Kemett is sitting straight up independently!  This is huge and a milestone I never thought we’d reach.  He did this while we were out-of-town with his cousin, James, who has been sitting straight up for a while.
  • Kemett is also getting on all fours and rocking!  He is trying so hard to figure out how to crawl!  He does an army crawl and likes to go after the remote, paper and anything else that is not a toy.
  • We saw an allergist and we can start adding in food again.
  • He had his first smoothie!  He loves them and it helps build his muscles in his mouth.
  • He also has had puffs now to help with chewing.  He’s doing great on this.
  • He is eating all his meals and snacks in his high chair now.  No more bottle!
  • We are doing chunks in purees and he’s handling them so well.
  • He went to Lake LBJ for the first time!
  • Celebrated his first father’s day.
  • Traveled to New Iberia and Vacherie.

MomMom Shirley died on June 5th, she was my dad’s stepmom, and has always been my grandmother.  She will be missed.

We visited the allergist.  She met with us for a long time and asked a ton of questions.  She is not convinced of the EOE diagnosis.  We will be doing skin testing at the end of the month and will do further blood tests on what comes back positive.  She is letting us introduce new foods again into Kemett’s diet, which has been wonderful.  It will probably be a long process to find out what exactly is going on, but we are fine taking it one day at a time.

Kemett really is doing so well.  His speech therapist has said he is very close to eating like a typical baby his age and he is progressing through everything exactly like a typical baby would  His babbling is close to a typical baby, although he is behind there.  Occupational therapy says he is a month or two behind typical babies.  And he is a few months behind on physical therapy but wow, he has made such great progress.  We know that Kemett will have therapy for years to come.  He loves his therapists!  They have taught us so much.  I work with Kemett when they are not here, which is during every playtime and meal time.  We celebrate all of his milestones as they come, on his time, because he works so hard to meet each one!  I am so proud of him!

We also want to thank everyone who has donated or set up a personal page for our One Small Step Walk!  I will do a post about that again soon because we have so much done now!  If you are interested in donating you can go here: http://onesmallstep.fpwr.org/dw/users/mdemand/DrippingSprings2014

As always, thank you to everyone for your continued support, prayers, and love!  Enjoy the pictures below!

Love,

The Demands

Kemett is 10 Months!

Kemett is 10 Months!

Kemett is 10 months!

Kemett is 10 months!

Kemett and James!

Kemett and James!

We love GG!

We love GG!

At the Lake!

At the Lake!

First Lake Trip!

First Lake Trip!

Happy Father's Day!

Happy Father’s Day!

Mama's Rainbow Bright Blanket

Mama’s Rainbow Bright Blanket

Sitting Straight!

Sitting Straight!

On all fours!

On All fours!