Early Intervention

Hello all!

I know I said our next post would be about our "window," however an important issue has come to light with Early Intervention services in Fairfax County, VA.

Early Intervention is a government-sponsored program (*not fully funded by the government, insurance is billed*) through the Individuals with Disabilities Act that brings therapists into the homes of children ages newborn to three who are considered at risk for developmental delays.  We have been blest with two therapists, physical and speech, who aid James several times a month with the challenges he faces due to Trisomy 21.  In this blog we will highlight the milestones these therapists help him accomplish.  His physical therapist helps him with muscle strength and coordination while his speech therapist helps stimulate his oral muscles to make feeding easier.  Without these therapists James would not have reached numerous milestones.  He can now:

Track objects with his eyes.
Reach for and grab objects.
Bring objects to mouth (still working on keeping it in his mouth).
Hold his feet in his hands.
Roll onto his stomach and back (thanks to his "HipHelper" compression shorts).
Pull to sit.
Hold his head up for short periods of time.
Suck for short periods of time.

We have been so proud of James' work and determination.  Babies with Down Syndrome are born with low muscle tone which makes it harder to reach important milestones.  Early Intervention keeps James on track and helps Mark and I to support James' development with exercises and stretches.

Unfortunately, Fairfax County put their program on hold.  Over the past couple years referrals to the program have increased drastically and Fairfax County hasn't kept up with the demand.  Any child referred to the program after March 19th of this year is on a waiting list and there are 500+ children on the list to date.  We are lucky that we decided to stay in Alexandria City as there are no issues with their EI program.  We hope that lobbying Fairfax will result in a budget that allows for the growth of this program as Early Intervention changes the course of these children's lives, giving them the help to learn and perfect the skills that most children develop naturally, helping them to be independent.  Within two days of James' birth I was introduced to this program as doctors and therapists advocate for the start of therapy as soon as possible so that, with the help of EI, James can develop normally and reach his milestones.  We hope that the Fairfax County government will recognize the importance of this program so that these children can grow up to be as independent as possible.  For now, we are thankful that we receive these services in the home so that James can grow to be big and strong!  :D

With love.

Therapy - Using his "surfboard" to help arm and neck strength.
What a cute little goober!  :D

Heart News!

Our cardiology checkup went great and we don't have to go back for six whole months!!!  That is a major record for James.  The echo showed that the hole between the top two chambers of his heart that still existed after surgery has closed!  Praise God!  He is off all heart medications and looks great.  His pulmonary valve still has some insufficiencies which is normal with Tetralogy of Fallot.  It is possible the valve may require surgery down the road, but it looks good for now.

The Window is Open

We don't tell people our son has down syndrome.  Oftentimes strangers will ask why he has a feeding tube, why he needs therapy.  We tell them that he had a congenital heart disease that affected his energy and he is learning to eat again now that he can.  Some may criticize us for our decision, accusing us of being ashamed of his diagnosis.  But that is it, it is just a diagnosis, it is not who he is.  We have chosen not to tell people because James is James, he is not his diagnosis and, sad as it is, in our society that diagnosis often comes first.  Of course, should someone ask we are not ashamed to tell them of James' genetic condition, but it is not information that needs to be proffered.  To be honest, I mostly forget about James' genetic makeup until a doctor or therapist says the dreaded, "that is because of the down syndrome."  Sure, it is not bad to connect his medical conditions to his genetics, oftentimes it is helpful so we can anticipate problems and take preventative measures before something becomes an issue, but I still wince whenever I hear that phrase.  James is not his diagnosis, he is my baby and I am madly in love with him.

It seems counterintuitive to start a blog about James by saying he has downs and then advocating that we not tell strangers.  But I assume if you are here you will look at James the same way I do.  He is a beautiful boy, full of life, that may have a lot of obstacles to overcome, but he will continue to prove that with love and support he can do anything.

I want this blog to be a window into James' life for the people closest to us, especially the ones who are far away, those we dearly miss (shout out to the family in CA!).  It will keep you up to date with James' therapies, medical achievements, and milestones.  It will be a much better version of my old Facebook page.  :D  But it will also be a site to advocate for the beautiful people with this genetic condition.  I was inspired by a website called Noah's Dad that you can peruse here.  This father's dedication to his son is beautiful and the support he gives fellow parents with his website inspires such hope.  These stories keep me believing that the world is a good place.

It may seem obvious that I titled this blog "The Window" because I want it to be a view into our life with James.  Sure, but that is not the reason.  Stay tuned for my next post and you will hear the story of the diagnosis and our "window".

With love.

Isn't he adorable?!  Sorry, the blog wouldn't let me rotate it.