Kemett is 20 Months!

Hi Everyone,

I know it has been a while since our last update.

We have had some fun times, as you will see in pictures.  We went to Denver in January to visit our best friends, the Chugers!  Kemett got to play in snow for the first time.  Kemett got his first therapy bike, got to see Great Grandma Demand, and went to his first concert- Wanda Jackson at the Lonestar Roundup!

You may also see in pics that Kemett got a play kitchen.  There is no food, just plates, pots, pans, spoons, etc.  Maybe next month I can talk more about the kitchen.

February was a busy Doctor month for us so here is an update:

  • ENT- We discovered Kemett had fluid in his ears. His ENT put him on nasonex and within 6 weeks it was cleared up.  We learned his tonsils and adenoids are still small.  He also had a hearing test at our follow up and he had perfect hearing!
  • Pulminology- Dr. Kang put Kemett on singulair to help with the fluid in his ears and to make sure he was in the best condition for his sleep study he had in March.  We got great news- Kemett’s Sleep Apnea is now MILD!  This was such amazing news- we have worked hard this past year to figure out all of Kemett’s health issues and get them under control.  Feels good to see they worked.  And is nice to sleep through the night without beeping noises.
  • Dentist- Kemett’s teeth look great!
  • GI- Dr. Scheimann thinks that Kemett looks great.  They were happy with his diet and decided it was time to get him off of his elecare formula.  This was such great news!  His scope in December showed his Eosiniphilic Esophagitis had improved.  We will do another scope in the next month or two to see how he is doing.
  • Allergist- We did skin testing and blood work.  We were hoping to add soy and/or almonds but unfortunately, Kemett is allergic to both still.  We were able to introduce beef and corn.
  • Nutritionist- Thanks to Melanie Silverman we were able to wean off of elecare Jr.  We have milk options that are enriched- rice, coconut, hemp and flax.  He is also on a calcium supplement, multi vitamin, and probiotic.
  • Therapies- Kemett is not speaking much, but signs what he needs.  He also took 5 steps a few weeks ago!  He is doing so well in therapy!

Endo- Dr. Miller- This is the big one and gets it’s own special paragraph.  We did his routine blood work in February and his IGF-1 Levels were high, 258, which means he has moved into the next phase of PWS, 2A.  Typically in this phase kids start gaining weight quickly because their metabolism slows down.  It can be controlled by diet.  Our nutritionist and Dr. Miller agreed that his diet is perfect right now, low carb, high fat and protein.  They also felt that weaning Kemett off of elecare might help.  We will retest his blood next month and hope his levels will lower or even out.  For those interested in nutritional phases and IGF-1, please read Dr.Miller’s article here.

Next Month is Prader-Willi Awareness Month!  I hope to answer people’s questions about PWS so please feel free to ask us anything.

Thanks again for all of your support!

Love,

The Demands

 

Enjoying the Snow in Denver!

 

Kemett and Grandma Demand

Kemett and Grandma Demand

Visiting Dr. Scheimann

Mardi Gras

My new Kitchen!

Spring fun!

Sleep Study

Parents just don’t understand

Easter

My new therapy bike!

Lonestar Roundup and first concert!

Lonestar Roundup

Lonestar Roundup

My new chair!

 

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!