December 21, 2010

NEW Ocupational Therapy

We decided to change both OT and PT at the same time to a new facility with fewer distractions.  Last week we had our OT evaluation and today was our first therapy session.  The first two sessions we will be seeing the company owner - a well versed therapist.  From there we are scheduled to work with a younger, less experienced woman.  I have plans to discuss this with the owner (who we saw today).  I love young therapists - I appreciate their energy and knowledge of new practices and their newness  prevents pigeon holing Jayden based on his diagnosis.  I also appreciate the skill that comes with experience, however.  Having been around the block, an experienced therapist knows what to look for and has a variety of tools for treatment.  In this case, I'm just not sure if I am comfortable with a younger therapist - when I met the younger therapist during the evaluation the owner treated her much like an intern giving me the impression she is pretty "green". 

So today we saw the experienced therapist.  At first, I had mixed feelings her: she doesn't put up with any misbehavior and is very strict.  In the beginning I was taken aback by this but by the end of the session I saw how well Jayden responded to her that I would like to work with her more and try to incorporate some of her strategies into my daily interactions with Jayden. When Jayden didn't like doing a task, he would throw the object which she would make him pick up.  She would also ask him to use words or signs to communicate.  At the end of the session, he signed all done beautifully then signed all done again tonight when done with his meal!  This is a sign we have been working on forever but it is now clear that he is using it. 

Its amazing how much can be accomplished in a 50 minutes session (rather than the 30 minutes we have had the past year and a half).  The session began with several hand activities - playing/squeezing a ball, pushing buttons, gripping toys and placing them in their slots.  Its clear Jayden has week hands and needs more strength in his fingers.  He also needs to work on his oppositional something or other -- basically, he should put his forefinger and thumb together to do work. I really liked how in tune the therapist was to sensory issues.  We weren't able to get into much detail in today's session but she is clearly very experienced in sensory integration.  I would like to discuss the results of a sensory profile I completed during the evaluation - put that on my list of topics for next week!  She did some oral motor work and would like to see Jayden making more mouth shapes - she feels his upper lip is tight and showed me a few exercises (hopefully I can replicate them at home!!).  Then we finished with balancing on a wedge like contraption and putting together puzzle pieces. 

Pulmonologist Check Up

We visited with a new pulmonologist this time around (so we could be seen at a closer location).  The pulmonologist asked many questions and quickly looked at Jayden's throat.  His recommendation was to not have another sleep study at this time and to continue check-ins once a year.  He reached this conclusion based on the following:

  1. Jayden has stayed on the same height and weight growth curves since his last sleep study.  (i.e. he is not overweight)
  2. He does not wake up at night gasping for air or choking.
  3. When he does have an apnea occurrence (stops breathing) while sleeping, it is only for a few seconds (according to my not-so-scientific observations) and he goes on sleeping afterward.
  4. Although he is a loud sleeper (he is a mouth breather) he is not snoring.  In fact, his snoring has improved since his last sleep study
  5. His tonsils, while present, are not abnormally large and therefore he does not seem to be at risk for obstruction.
All in all, I agreed with the pulmonologist that a second sleep study was not warranted at this time.  I am actually relieved that I can check that off my list!  Sleep studies are not fun and I would rather not have to go through one unless I think his apnea needs a closer monitoring.

December 8, 2010

NEW Physical Therapy

After having complained about our previous therapy provider, I decided to make a change and try a new facility.  We moved Physical and Occupational Therapy to PT in Motion/OT ECT in Carlsbad and today was our first PT session (after the evaluation).  So far, so good!  We worked a lot on Jayden's core since it is so weak.  Started with sitting in a chair and trying to pick up beans and toys with his feet.  He loved the game!  Our hopes is he will need less lumbar support as his core strengthens.  Then we moved on to some balance work on the ball and side sitting.  Kirsten, our PT, had Jayden sit on a small ball - about the size of a soccer ball and play with a peg board.  I love how she incorporates fine motor skills into the activity!  We ended the session with more balance work on a horizontal punching bag.  The 50 minute session FLEW by and I could tell Jayden was tired on the way home.  The session was very different from our previous therapist's program.  The past month or so we have been focusing on stepping on objects (balancing on one leg), kicking towers, and stepping up and down a step.  While these are certainly activities that Jayden needs work on, I liked today's focus on the core and I think we will see that as the core gets stronger, everything else will fall into place.

Side sitting while putting coins in the piggy.

Balancing while sitting on a soccer ball and poking out pegs from the peg board.

December 5, 2010


I spend a lot of time analyzing Jayden - his behavior, eating patterns, sleeping patterns, energy levels.... I am always asking: "is this normal?"  Well today, he put me at ease.  Today, he was a typical toddler:  on the move, opinionated, energetic and getting into trouble!  He kept me on my toes all day running around the stores while we did some shopping, getting into every nook and cranny in the house, refusing to nap and letting us know when he wasn't getting his way.  And is he hyperphagic yet?  NO WAY!!  The kid ate almost nothing all day as he refused one meal after the other.  Apparently, he will eat a lot if he LIKES something but has no problem forgoing food if it isn't from his limited menu.

Sometimes I wonder what "normal" is.  Today was as "normal" as they come.


Photos from yesterday's Santa Train Ride below.

December 2, 2010

Stacking Blocks!

There was a period of time when it felt that Jayden's development was stagnant - nothing was changing.  Lately however, I feel Jayden is doing new things daily!  Just this afternoon I watched as he stacked blocks into a tower, 3 high!  This is something we have been working on in therapy for months but he just had no desire to do at home.  Last week, I noticed he randomly stacked two legos - I thought it was just by chance.  Then this afternoon he is stacking and stacking.  Clearly he knows how to stack blocks!

I bought Jayden a book of photos a few weeks back -the book was another priceless purchase.  He loves to flip through the pages and point and photos which I repeatedly label for him.  Today he found the photo of a brown pony which looks much like the pony he rides each week:  kvika.  Clearly, he recognized this pony and he kept signing more - I think he wanted to go riding!!

Jayden is trying to get over a cold right now.  I look forward to him looking better soon so we can get out of the house and participate in activities again.  I think both of us are going a bit stir crazy!

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!!