Kemett is 11 Months!

Hello Everyone,

I can’t believe that Kemett is already 11 months!  I have been thinking about life a year ago.  We were anticipating Kemett’s arrival by getting his room ready, washing baby clothes and cloth diapers, and nesting.  We were resting and watching the Sopranos (Kemett’s favorite show :-)).  We were ready for whatever life was about to hand to us, and I’m so happy we were prepared with an open mind.   During those long days spent in NICU, all I did was think about that room we had made for him and those cloth diapers I wanted to put on him (I was so tired of leaks and blowouts in disposables in the nicu), at home.  I just wanted to be home, away from the strangers, the wires and cords, and separation from Kemett.  We wanted to be able to sit on the couch, watch football, and hold our baby while he slept. ( Although, Kemett had a great view of the stadium and tower from his bed, it still wasn’t the same.)  We wanted the comforts of home; to build our family and get to know Kemett in our own way.  We were lucky to only spend 3 weeks in NICU.  We were lucky we could take Kemett home.  I envy those with easy deliveries and who get to take their babies home, but I wouldn’t change our experience for anything in the world.

Here are some highlights from this month:

  • Kemett weighs 18 lbs 6.5 oz and is 29 inches long!
  • Kemett can sit up straight and get into a crawling position.
  • He got his 7th and 8th teeth!
  • He had his second sleep study (they do one 6 months after being on growth hormones).
  • We visited his Nanny at the LBJ Library to see their 60’s exhibit.  Kemett is ready to read the Feminist Mystique.
  • He got a pair of Sure Steps (ankle foot orthotics) and his first two pairs of shoes!
  • We participated in his first 4th of July Parade in Belterra.
  • We had Louisiana family in town visiting, my dad’s brother, Uncle Ricky!  This meant we ate very well for that week!
  • Kemett is eating more chunks.
  • Kemett sat in the tub independently
  • Kemett swung in a swing for the first time
  • AND he rode in a shopping cart for the first time!

Next month I will have more medical updates.  He is seeing a lot of doctors, including Dr. Miller again and Dr. Scheimann.   I also look forward to talking about all of Kemett’s accomplishments this year.

Remember, One SMALL Step Dripping Springs is on September 13!  Visit our personal fundraising page for more info: http://onesmallstep.fpwr.org/dw/users/mdemand/DrippingSprings2014

Love,
The Demands

 

Kemett is 11 Months!

Kemett is 11 Months!

Kemett is 11 Months!

Kemett is 11 Months!

First time swinging!

First time swinging!

Family pic at the park!

Family pic at the park!

Kemett Sitting!

Kemett Sitting!

Fourth of July!

Fourth of July!

First time sitting in shopping cart!

First time sitting in shopping cart!

Kemett and Nanny with LBJ!

Kemett and Nanny with LBJ!

Kemett and Uncle Ricky!

Kemett and Uncle Ricky!

Sitting independently in bathtub!

Sitting independently in bathtub!

Sure Steps!

Sure Steps!

Kemett loves his shoes!

Kemett loves his shoes!

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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!

Kemett is 9 Months (on May 25th)

Hi Everyone,

As you can see I’m almost ONE whole month late for this post!  Kemett turns 10 months this week, so I hope to get another post out soon!

This month has been a big one for Kemett.  He is getting so big and looking so grown up!  Here are some highlights:

  • He is rolling all over the place to get what he needs and wants!
  • He can sit supported on his own.
  • We are working on building strength for crawling.
  • We removed eggs from my diet and changed his formula again.
  • He had an endoscopy and flex-sigmoidoscopy with biopsies- he did great!
  • He got teeth 5 and 6.
  • He got his first professional haircut!  (it was haircut number 2 if you are counting!)
  • He is eating chunks/finger foods and can feed himself.  He holds spoon and can put in his mouth.
  • I stopped pumping breast milk because of the diet restrictions and his allergies, so he had his last bottle of breast milk.  It was bitter sweet.
  • Kemett celebrated Grandma’s birthday
  • He swam for the first time!
  • Kemett is 28 inches long and is 16 lbs 10 oz

We are working with a GI doctor and allergist to figure out what is going on.  The biopsies revealed that he has eosinophilic cells in his lower esophagus, as well as reflux.  Now we have to figure out with an allergist what is causing these allergy cells.  He has been on a restricted diet for almost 2 months now and Kemett has had a hard time gaining weight.  I look forward to him getting more food added in and gaining weight.

One good thing is that we saw the Cranio Facial plastic surgeon and he thinks Kemett looks good.  He is holding his head up on his own and not compromising his airway.   He does not want to see us for another year and does not feel that he will need a jaw distraction surgery!  It was such good news to be able to take one more thing and doctor off our list!

Below are some pictures from this past month!

 

Love,

The Demands

 

9 Months!

9 Months!

9 Months!

9 Months!

Look at those eyes!

Look at those eyes!

My first professional haircut!

My first professional haircut!

Mama Fred Fest

Mama Fred Fest

Before endoscopy

Before endoscopy

Exersaucer

Exersaucer

I love GInger!

I love Ginger!

Kemett is 7 Months!

Hi Everyone,

Kemett is 7 months today!  Here are the highlights from this month:

  • He is starting to roll from stomach to back and then back to stomach!
  • He found his feet and is loving them
  • He can do slightly supported sitting and can bear weight through his arms
  • We are also doing more crawl positioning and he can hold himself up
  • We can tell he really wants to move.  When we put him on his tummy he eventually does an entire 360!
  • He screeches and talks loudly
  • He loves petting Kona and Ginger and squeals at them!
  • He is eating solids 2x per day- he loves summer squash and avocado
  • He is working on drinking from an open cup
  • He met his Great Grandma and Grandpa Demand and his Great Aunt Peggy
  • He now has to wear a hip brace because his left hip socket was not forming correctly.  The orthopedic doctor said that it was still early but to be safe he needs to sleep in the brace.
  • He’s been on HGH for 5 weeks!
  • He celebrated my birthday
  • We started working with a nutritionist who specializes in PWS

Kemett is really growing up.  He is getting so much stronger and more animated!  We can really tell a difference since he started growth hormone therapy.  He is more alert during the day.

I feel like this past month has been a quiet one- not as many doctors.  We did travel to Houston to see his endocrinologist and we decided that we are going to go to Florida to see Dr. Miller and not continue seeing this doctor.  We want what is best for Kemett.  Next Monday there will be a post about Florida- finally.

I also hope to blog about the nutritionist and some things that Andrew and I are doing to change our diet.

SAVE THE DATE- We will be hosting a walk for Kemett to raise money for the Foundation For Prader-Willi Research on September 13, here in our neighborhood.  I will do a blog post with more information next month.  It is called One Small Step!

Thank you all, as always, for all of your support!  Enjoy the pictures below.

Love,
The Demands

 

7 Months!

7 Months!

7 Months!

7 Months!

7 Months!

7 Months!

I'm 7 months!

I’m 7 months!

I love eating!

I love eating!

Doing my 360's with the dogs

Doing my 360’s with the dogs

Meeting Great Grandma and Grandpa Demand

Meeting Great Grandma and Grandpa Demand

Dad and I doing guy things.

Dad and I doing guy things.

Looking grown up!

Looking grown up!

No more car seat in stroller!

No more car seat in stroller!

Hair

Hair

Sitting Up

Sitting Up

Reading my book.

Reading my book.

Jeans for Rare Disease Day

Jeans for Rare Disease Day