November 23, 2010

Thanksgiving Time

Thanksgiving is just around the corner...and so the planning continues.  While I love Thanksgiving for the time spent with family and the festiveness, it pulls a close second to Halloween as one of my least favorite events of the year.  As a family living with PWS, a day of feasting brings forth lots of anxiety - and Jayden doesn't even have hyperphagia yet!!

We decided last year, when Jayden was less than a year old, that we wanted to take the focus away from the meal and place it more deservingly on time spent with family and friends.  This year, we are hosting our 2nd annual Turkey Trot - a 3 mile walk through the neighborhood with many of our neighborhood friends joining us.  It will be my favorite part of the day! 

As for the meal....we are trying to keep is as carb conscious as possible.  Turkey is a great food for Jayden so lucky for us, that Thanksgiving tradition may live on.  As for the rest of the meal, we are making a few compromises for Jayden as well as the rest of the family.  Here is our planned menu so far:

Stuffed mushrooms,
Veggie platter
Shrimp cocktail

Turkey and gravy
Cornbread stuffing  (Jayden will not get any stuffing)
Green beans with onion and bell pepper

Baked sweet potato fries
Green salad

Sounds pretty plain and simple!  Perhaps I will get more creative in years to come.

November 18, 2010


So much seems to be happening, and yet when I sit down to record it all, I can't remember all the things I thought were so important!

Jayden is pointing at things a lot and can communicate with pointing quite a bit.  He points where he wants to go, or if he wants to show you something.  He points to his crib when he wants to go to sleep.  He will point at pictures in his picture book - he knows airplane and baby and will point when asked.  He has quite a few words - some of which I can recognize and he is showing much more understanding.  He is beginning to respond to commands such as give it to me.  Today I pointed at a bubble wand and asked him to give it to me:  he leaned over, picked  it up and handed it right to me!!

In PT we continue to work on balance and core strength.  Jayden has a noticeably weak core so the therapist has him sitting on a exercise ball to throw balls as well as do a few sit ups on.  He is still working on stepping up and down and balancing on one leg.  He is getting much better at maneuvering up and down steps but down is still pretty shaky.  He loves to kick over towers but hasn't quite caught on to stacking the blocks himself yet!  He has figured out slides and can go down most slides now on his own - he knows how to sit down then push off and has the core strength to hold himself up while sliding.  

Yesterday we went to the zoo.  Jayden loves looking at everything there.  He refuses, however, to hold your hand.  If you try to take his hand, he will pull away, and fold his arms across his chest to protect them from you.  If you insist on holding his hand, he will sit down and start to tantrum.  I'm not sure if this is just him being independent or if he is showing tactile defensiveness again.  I am going to try massaging his arms frequently and see if that helps.

Mealtimes and snacks are very routine for us.  Jayden only eats in his chair (or in the car when necessary! but that doesn't happen often).  He always eats around the same time.  He is always ready for his meal or snack.  If you say its time for snack, for example, he will run over to his chair and demand help to be put in.  This is pretty routine for all meals.  He is always ready to eat.  He usually only asks to eat around his meal times.  He seems to be content with however much food I give him - although he would always like more fruit.  He loves all fruit and will eat as much as I allow.  I think at this point he gets about 4 servings a day.  Since he doesn't eat many veggies, I feel fruit is still important in his diet.  My hopes are as he gets older he will eat more veggies and I can reduce fruit.  Lately, I have found a sneaky way to get him eating more veggies.  I have started using apple sauce to hide his supplements - just a tablespoon or two at breakfast and dinner.  Then I add a couple of finely grated baby carrots and today I added zucchini.  He loves it!

Here is a short video of Jayden riding his big wheel - he loves this thing!!

(below) Riding his big wheel down the neighborhood - if I could just get him to ride it back home too!

(below) Don't touch my arms/hands!!

(below) Hippotherapy:  putting rings on the post.

(below) Feeding his pony, Kvika, after his ride.

  • Eats with a spoon independently (I think this could have happened long ago if I had given him more opportunities)
  • Will find and point at the airplane in his picture book 
  • A thousand other little things I can't pinpoint right now!!

Current measurements:  not available

  • Weekly Occupational therapy
  • Weekly Physical therapy
  • Weekly Speech
  • Weekly Therapeutic Riding


I feel we are back on track with supplements.  I have started adding them to a tablespoon of applesauce with a little bit of grated carrot (or zucchini today) and Jayden loves it!  I doubled our carnitine-fumarate dose and while I cannot be sure that is the reason behind his excellent energy levels the past few days, I can guarantee it is the cause of his loose and over the top smelly stools.  I decided to cut back the carnitine from 1000 mg to 750 to see if that will help.

0.6 mg Genotropin (HGH)
750 mg carnitine fumarate (split into 2 doses)
1.5 tsp creatine monohydrate (split into 2 doses)
100 mg CoQ10 (split into 2 doses)
Methylcobalamin B12 injections every 3 days
1/2 tsp Childrens DHA fish oil
1 TBS Animal Parade Multivitamin

November 9, 2010

How Much Sleep does a Baby Need?

I have been fretting about Jayden going to bed so early - since the time change he has been going down at 6:00.  Of course I start blaming PWS thinking that is why he sleeps so much.  Well, I did a quick google search to see just how much sleep a 20 month old should get and I found some interesting information.  Apparently, according to Dr. Sears, babies ages 6 to 24 months need a total of 12 to 14 hours of sleep a day.  That is nuts!  I guess it isn't unreasonable that Jayden is trying to get 12 (6pm to 6am).  He also naps for about 2 hours total during the day.  That puts him within the normal range.  I shall worry no more.  The boy needs his sleep (as do I!!)

Here is the link to Dr Sears:

November 8, 2010


You may have followed my blog the last year and a half or you may be new to my "journal".  This blog is for our family, friends and PWS community who wish to follow the progress of Jayden and our journey through life with Prader-Willi Syndrome.  If you are new to the blog, you can view my previous posts at

Each month I try to post a monthly update with milestones, supplement information and anything note worthy.  Occasionally, I also post about random happenings, diet, or information I think other PWS families may find relevant.  I hope you enjoy reading our blog - please leave your comments as I would love to hear from you!!

Time Change

The time changed yesterday... Last year we had no luck getting Jayden's body to switch along with the rest of us so this year I am crossing my fingers we can get him to change.  Usually, Jayden goes to bed sometime between 7 and 7:30, on an exciting night he may make it until 8.  Well, last night at 6 Jayden is getting all snuggly and cute with me on the couch and points upstairs - telling me he is ready to go to bed.  He was exhausted at 6 o'clock!  I'm hoping he will stay up later tonight.

Other cute news, Jayden has learned to push his high chair to the kitchen when he is ready for meals.  When I want to get him ready to eat I will just ask him to get his chair and he pushes it over.  Very cute.

November 5, 2010


Jayden doesn't seem to have the same energy levels as other kids his age.  It is possible that I am just comparing him to kids who are slightly older but I'm pretty sure he sits and observes more than other 20 month olds.  Energy levels are certainly a concern of mine because its important that he keeps active so he can remain healthy. So we will continue to offer lots of outings where he can run and walk around getting lots of exercise!!