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.

Ears, Adenoids, and Tonsils

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

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

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 http://www.vivint.com/givesbackproject/charity/26. 

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: http://www.vivint.com/givesbackproject/charity/26 (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:  http://www.vivint.com/givesbackproject/charity/26
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!!

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!