December 23, 2011

Teeth Grinding....progress

Jayden seems to grind his teeth less on days after he has gone to the park. THis past Tuesday, at OT, Jayden did a lot of proprioceptive work: swimming in balls while wearing a weighted vest, running up a ramp and jumping, swinging.... At the end of the session we gave him cold water and there was no grinding.

This afternoon Jayden went to the park. He is drinking his milk right now with much less grinding than usual. Although there is still a bit, it isn't after EVERY sip. Wish we could find that miracle activity that would stop it completely.

December 17, 2011


Jayden started grinding his teeth as soon as they broke through -- so basically he has ALWAYS ground his teeth. Lately, however, it has become HORRIBLE. The majority of the grinding occurs when he is drinking.... from a cup, straw, whatever. Sometimes he grinds while eating but this is infrequent. I have asked all his therapists about the grinding and they are all in agreement that it must be a need for proprioceptive input. No one, however, has been able to prescribe a regimen to reduce/eliminate the grinding.

The grinding is like fingernails on a chalkboard - it makes you hair prickle... There are times when I have to take his drink away it bothers me so much!

This afternoon, after a particularly busy day of going to the park, running around at the horse barn and going to the park a second time, Jayden drank for the first time in FOREVER without grinding his teeth! I was in heaven, and praising repeatedly!!! Tomorrow I plan to implement a little experiment. In the morning, I want to see if the grinding is back. If so, I plan to take him to the park and see if that helps. Should be interesting!

Stay tuned.

December 7, 2011

I know its been a long time.... here is a quick update!

Ok, So life is crazy.... I never blog. I am SOOOO sorry. Here is a quick update. We went to our annual check in at UC Irvine. Jayden participates in the natural history study there. Dr Gold kindly mentioned he does not present many of the physical traits of PWS, although he does have a few. I guess that is a compliment??

Anyway... the highlight of the visit for me was checking in on Jayden's growth. He is 37.35 inches tall and 33 pounds. This puts him at the 75% for weight for height and between the 50th and 75th percentiles for weight AND height. This is a bit heavier than the PWS specialists want their kids BUT I think it is good for Jayden. He has stayed on the same growth curve for the past 2 years which is what is most important - he hasn't had any huge unexplained jumps in weight. His weight has increased proportionately to his height. YAY!

We are still working on getting him to eat more vegetables. He is now eating carrots which was a huge achievement! He will now eat carrots, tomatoes, avocado, dried snap peas and dried green beans. Of course he continues to LOVE all fruits and nuts. We have really cut back on dairy. He rarely gets any cheese and we give him coconut milk or almond milk instead of dairy beverages. The only dairy he gets regularly is his yogurt for breakfast and dinner - since we add his supplements to yogurt, this works nicely for us.

We have really been focusing on Jayden's speech. He has a half hour on Mondays, a combined speech/OT on Tuesdays and a REALLY GOOD 1 hour session at Innovative Therapy for Kids on Thursday. He is beginning to sing along with songs (if you listen VERY closely you can hear him saying some of the words). He is attempting many more sounds but often needs encouragement to use the appropriate sounds for words.

We are starting to potty train. He is sometimes reluctant to sit on the potty but we have been reinforcing his attempts with music from the WIGGLES (which he loves!) and he will often be successful. I'm hoping to report daytime training is complete sometime soon in the new year!

September 22, 2011

Speech Part Deux

After our speech session at innovative, Dan went strait to management at Rady's asking why we weren't getting appropriate care. Long story short, we have a new ST and are combining ST and OT for a one hour session. The plan is to have one hour a week to start, then move to two sessions a week.

We had our first session this week. I wasn't too very impressed. I'm hoping things will take off as we get more familiar with both therapists working together. In the meantime, I have weekly appointments made at innovative for the next few weeks. I'm really looking forward to those appointments and hope to see some positive changes!

September 13, 2011

Speech Apraxia

So a month or so back, our Rady's Speech therapist mentioned Jayden is now old enough to be diagnosed with Apraxia. This didn't really surprise me, I figured it was just a matter of time but this made it more "official".

We have been very discouraged with Jayden's progress in speech and have found his current therapy isn't very effective. We decided to get a second opinion and go outside our insurance to another therapy group I think VERY highly of: Innovative Therapy for Kids in Carlsbad.

During our 1 hour session, we worked with two therapists, one of which is a specialist in augmentative technology. The therapists felt it was clear Jayden has apraxia, as well as sensory integration issues. Watching them work with him was amazing, they were getting him to really show off all his vocalizations (which is rare, usually he shuts down in a new setting). They spun him in a desk chair to give him vestibular stimulation and his articulation was amazing afterwards! They gave him prompts with a sucker looking stick, they massaged his arms and gave joint compressions. All these techniques WORKED! I would love to go to this therapist regularly but our insurance will not cover them :(

So here is the kicker..... we currently have speech once a week for 30 minutes. With a diagnosis of apraxia we should be getting a minimum of 3-5 sessions a week, 45 minutes per session. Why did my Rady's therapist not tell me this when she "diagnosed" him with apraxia???? I specifically asked what this diagnosis meant for his treatment and she shrugged her shoulders and said it didn't change anything! Nothing about the need for increased visits! Nothing about an extended session time!

I hate Rady Children's Hospital therapists!!!

September 2, 2011

Calorie Counting

Ahhhh.....Its been so long! I used to question why people couldn't keep up better on their blogs. Now I know!! Much has happened since my last post and I will not even try to fill in the blanks.

Jayden checked in with the San Deigo PWS clinic a few months ago - we go once a year just to make sure we aren't missing anything. Both the nutritionist and geneticist recommended I lower his calories to 970/day and not let him gain wait over the next year. Jayden is currently at the 75th percentile for weight....I think he is about average for height. If you look at him, however, he doesn't look overweight. My only "weight" concern is his heavy middle. Most of the time he looks a bit bloated, like he just drank a gallon of water.

Well, I counted calories, tried to cut back to 970 and just didn't feel right about it. This isn't the first time I have counted calories. I have calorie counted on and off since he was just over a year old. What I didn't like was feeling that he might need more to eat and I wasn't giving it to him.

So I asked Melanie Silverman to take a look at Jayden's physique before our annual nutrition consultation. She agreed with me that he looked great and we shouldn't limit his calories just yet. I love having a professional to consult with. My gut was telling me not to restrict him just yet and she was able to confirm. I haven't counted calories in a few weeks now. I do, however, weigh him frequently and so far, so good.

Yesterday Jayden ate 2 trader joe sausages (120 calories each) for lunch in addition to some fruit and yogurt. Of course I freaked out about this but for now, I am going with the flow.

July 8, 2011

Post Surgery

Jayden had his surgery yesterday. We removed his tonsils and part of his adenoid and placed ear tubes. The surgery went well and there were no complications. After the surgery the Dr. briefed us and told us Jayden had LOTS of icky fluid in his ears. His tonsils and adenoid were of normal size (so why did we do this surgery??!!) We had an excellent anesthesiologist who listened to our concerns and detailed a plan accordingly. We did not use any sedatives prior to the surgery and gave no narcotics afterwards. Jayden has only been getting tylenol. So far so good! He seemed a little less energetic today and much more "huggy" but other than that he is happy! I am enjoying all the extra cuddle time!

Last month we went to the PWS clinic in San Diego. It had been about a year since our last visit. We reviewed Jayden's weight and diet and looked at his GH dose. They want us to maintain Jayden's weight over the next year and not allow any weight gain. They suggested limiting his calories to 960. I'm not sure how I feel about this but I am trying to closely monitor his calories and weight for awhile to see where it is going.

Interesting note from this past week.... while at the hospital after Jayden's surgery, I was looking at the menu they had for the kids. They did a great job offering healthy options and labeled each menu item with a 0,1,2,3 to represent the number of carbs each item contained (1 unit = 15 carbs). An omelet or other egg dish was 0 (as to be expected)...cottage cheese and fruit? A 3!!!! It was equivalent to a grilled cheese sandwich! I was shocked! I give Jayden cottage cheese and fruit all the time - I didn't realize how many carbs I was feeding him!

Jayden is eating a few more things these days: sunflower seeds, walnuts, dried edamame, dried snap peas. Its nice to have a few more items to include in his diet. It allows me to rely less on cheese and fruit for his snacks.

June 10, 2011

Ears, Adenoids, and Tonsils

Vivint is giving away $1.25 Million to charities. Help us win!

Surgery it is!!  Last month we finally got in to see the ENT.  A quick look at Jayden's ears and the ENT determined ear tubes and adenoid removal were necessary to get rid of the fluid.  He also presented the option of removing the tonsils at the same time.  So next month we are going in for surgery.  We decided to do all three procedures:  ear tubes, partial adenoidectomy and tonsil removal.  Our hopes is this will help with his night time breathing: his snoring is horrible and he wakes up several times a night.

Tyler Photos

Vivint is giving away $1.25 Million to charities. Help us win!

So while this blog is mainly about Jayden, I have to share a photo of Tyler....he is so cute!!

May 8, 2011

Quick Update

Sorry I have been away for quite some time....  Having a new baby in the house makes blogging time scarce... 

On the Jayden front... we have come across a small bump in the road regarding therapies.  Our "new" OT which we began in December decided she would no longer be able to provide services in our area so we are forced to return to our previous provider which I have been less than pleased with.  Unfortunately, there are no other options for us.  I would love to switch to a PPO but I have heard they don't pay well for therapies.   Sigh..

Jayden is babbling up a storm. We have no idea what he is saying but it is cute none the less.  We are also trying to increase his signing.  We have been watching signing time videos almost daily - I can't stop singing the songs!!  I don't know how much Jayden is picking up but I now know the signs for several colors and activities!

For all  of my facebook friends.... please help FPWR win $100,000!!  This will fund 2 more research projects that may otherwise go unfunded!  You can help by voting daily at

Initial Steps for Endorsing FPWR:
  1. Log in to your Facebook account, and go to Account (pull-down menu) --> Privacy Settings --> Connecting on Facebook (View Settings). There, make sure that “See your likes, connections, and other activities” is set to “Everyone.”
  2. Go to: (Vivint’s page for FPWR)
  3. When prompted, click the “Like” button and the Facebook “Login” button.  ( NOTE: If you are not already logged in to Facebook, you will have to type in your login info)
  4. Scroll down and click the “Endorse!” button.

Steps for Endorsing FPWR each day:
  1. Bookmark FPWR's Vivint page:
  2. Visit it once a day, and click “Endorse!”
Please tell all your family and friends to vote daily!  We can win the Canadian region but only with your help!!

April 9, 2011

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.

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

March 27, 2011

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.

  • 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

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

  • 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

March 21, 2011

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

March 19, 2011

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!

March 2, 2011

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.

February 21, 2011

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!

February 16, 2011

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.

January 5, 2011

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.