Dr. Miller - Phases of PWS

My favorite doctor, Dr. Jennifer Miller has published a paper on the phases of appetite development in individuals with PWS.  Check it out.

http://www.ncbi.nlm.nih.gov/pubmed/21465655

Dr. A. Sharma, Chair of the Canadian Obesity Network, has blogged about it here:

http://www.drsharma.ca/obesity-eating-behaviour-in-prader-willi-syndrome.html

25+ Month Report

Its been awhile since I have posted a " progress report" so while the little guys are napping, I thought I would try to get one posted!

Jayden has been making progress on all fronts lately!  We are all impressed with his receptive language - he seems to be understanding so much more!  This afternoon I asked him to give me a kiss and he did!  He also knows several words involved with getting dressed (shoes, socks, feet, toes) and will help get dressed...and undressed!!  He will completely take off his own shoes, socks, and shirt (even when we are out!).  His expressive language is still slow coming but he knows how to get a point across regardless and I still think he is saying more words than we understand.  I recently bought a few signing time videos and would like to try actively teaching more signs.

“Milestones”

• Jumps with two legs (new in the past few weeks)
• Runs (he does keep his arms up for balance and to protect from falling!)
• Gets in his chair or sits down when asked
• Signs more, all done, please, help
• Speaks: more, elmo, mama, bye-bye, up, bath

Current measurements:

• 36 inches tall
• 28 pounds

Therapies:

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

Supplements:

• 0.6 mg Genotropin (HGH)
• 500 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 (split into 2 doses)
• 1 serving Animal Parade Children’s Multivitamin

New Baby has Arrived!

Well, I have to apologize for not having posted much the last few months.  Being pregnant and caring for a two-year old has kept me VERY busy!  Tyler James arrived Friday, March 11th.  We had a very successful planned c-section and everything went perfectly.  We left the hospital Sunday morning after two nights with NO sleep.  We were very happy to return home and recover there!

Here are a few long overdue photos of the little man!

And the proud older brother

Is it REAL Food?

When Jayden was born, we decided to implement a holistic diet for Jayden that only included REAL food in its natural state.  It makes his diet very simple to follow:  meat (including fish), vegetables, fruit and limited dairy.  If you don't know what is in it, he doesn't eat it.

I saw this posted on another blog today and had to post it for myself!  This is a great reminder of what REAL food is!

Opening Doors

Unfortunately, the blog has been on the back burner for awhile....I must set aside some time to update!

Since Jayden gets into EVERYTHING, we have started locking doors to keep him out of certain rooms.  We keep the key above the door - you know the type of key I am referring to, it looks similar to a bobby pin.  Well, Jayden now tries to use anything similar to unlock the door.  The other day he had a small wrench and a pen, today he tried using a bobby pin.  Its hilarious to watch.  It must be good for fine motor in some small way since he has to get a little object into a little target...

We had an endo appointment yesterday.  His height is good (35 inches is between 50 and 75%) weight is holding steady at 28.5 lbs (50%).  They are using a new lab for bloodwork and his IGF-s came back super high (in the 400's with a reference value at 130) so we are waiting to get results from a second sample.

Today Jayden starts pre-school.  I am looking forward to sending him off but will miss him terribly.

The Two-Year Old Birthday Party

Jayden turned two yesterday and we held a small birthday party for him at the house. The weather was less than Southern California perfect with rain throughout the day so we substituted our outdoor plans with a makeshift play yard in the garage. Jayden and two of his friends rode ride on toys and played with play dough while the adults chatted and watched. We all had lunch together (no cake) before hitting the pinata filled with toys. The boys had a great time!

Toddler Musings

Just a quick update since it has been too long since my last post!

We bought Jadyen a toddler bed for his birthday. Last night was Jayden's second night sleeping in the bed. Around 4:30 he started getting up and walking around the hall but was happy to return to his bed. He did this three times after which I put him in his crib to finish the night.

This morning Jayden learned how to take off his shirt by himself. Immediately after dressing him he pulled off his shirt and is now playing shirtless. This could be an interesting day. This weekend Dan showed him how to zip up his pajamas and he has been zipping things up the last few days - luckily he hasn't started unzipping his clothes yet but I can't imagine that is too far off.

And on a totally different topic....does anyone have a contact with Glaceau (Vitamin Water)? Please contact me.

OT Evaluation (21 months)

People are always telling me they can't tell anything is wrong with Jayden or that is looks like he is doing great! Of course I am thrilled that Jayden doesn't stick out like a sore thumb... or so I think....

Today I received the results of his OT evaluation. I was particularly interested in the sensory profile - a 48 question evaluation I completed. According to the questionnaire, Jayden has low registration (he doesn't process stimulus well), he visually processes stimulus less than he should and he seeks oral stimulus more than typical kids. In most fine motor areas, Jayden scored at approximately 1.4 years. I had expected him to fall at around the 1.5 years of development so I wasn't too far off there. The hardest thing to read however was he still uses an inferior pincher grasp which is an 8 month skill (Jayden was 21 months at the time of the evaluation) - its hard to accept he is a year delayed!!

I'm thrilled to have moved to the new OT provider. I was getting complacent at Rady's and felt that I was being assured he was doing great. Now at the new facility, I recognize there is a lot more we can be working on and feel that I am picking up some new tricks to practice at home (which by the way, Jayden loves!!) I bought a cool table top to go on my favorite cube chair so we can practice our fine motor skills, check it out:

(This is not Jayden in the photo, btw) I love this setup (and so does Jayden! He asks to sit in his chair and have the tray put on!!) Having him "enclosed" helps us focus and it gives him a nice place to settle down while we work.

And in other news, Jayden has found a love for animated entertainment: tv (especially elmo and thomas the train), and my computer. As I type this he is sitting in my lap enjoying some animation on the screen. This morning he watched sesame street while we practiced our balance sitting on a ball.

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.