A Lil' Boy's Journey to Live….

1/3/11

Riley had an appt to with Dr. Hanna today. Pretty routine. He has not gained any weight actually he has lost a little. He started microlipids last week. Also his finger tips are pretty purple and when he’s just standing around or sitting he is breathing pretty heavy… like he ran around the block yet never moved!
I figured that we would go back in two weeks and schedule a Cath for two weeks after that, but Hanna wants him Cathed in two weeks! So they should be calling tomorrow or the next day to schedule the Cath.
When I know when it is I will be sure to update!
I also saw Jilly today. She is doing WONDERFUL!! No O2 and sats in upper 70’s to upper 80’s. Awesome! They may be able to go home in about a week! Hooray!!
I also checked up on Bradley. It was suggested to me by transplant not to visit with him and his Mother. He is not doing good…at all. Mom has not left his bedside in days…not even to walk the hall. Bradley will most likely be earning his Angel Wings… at any time 😦
It very hard to handle the thought of Bradley passing. He is a beautiful 4 year old boy who for the last year since his heart/lung transplant has been a model of a Successful Transplant. Growing … Thriving …. everything you would want a recipient to do! To think that he was doing so beautifully and now is practically waiting to earn his wings is just Freakin’ Heart Breaking ♥ For me its Scary cause Riley has other complicating factors that Bradley DIDNT have like Heterotaxy and Asplenia! My heart is just Broken for Bradley.. his Mother …. and Everyone Effected by this!
Please Pray for Bradley and strength for his Mother ♥

 

 

Pop-Pop being Silly with Riley…

         

Oh Riley…….                                            Riley and Granny…

Advertisements

Comments on: "1/3/11" (4)

  1. Dear Mom and Dad of little Riley,
    For the past few months I have watched as you waite everyday for a prayer a run through a door or a phone call my heart gose out to you. But Today My daughter Haley bettes the soul owner of the Haley foundation at thriteen wanted me to send this gift to Riley I would love to meet him. to give him the gifts from Haley.

    And the Haley Foundation program is sending our love as we get back off the ground. we waite for good news Prayers. Our story our love and Blessings.
    The Haley Foundation is working to establish the first and only school in the nation dedicated to providing children with neurological disorders a meaningful education.

    The Haley Academy will be located in Ashland Oregon. With the success of this school, there are plans to open 3 more in other areas of the country.

    The families served will be coping with Epilepsy and/or Autism. All children with a learning disorder are welcome, however, focus is on the previously stated conditions.

    It is not acceptable for these kids to slide through the system in “special ed”. Our goal is to teach kids the skills to live life with their disorder and become responsible adults who live their lives with a sense of normalcy.

    Please support our goals and these families!

    Thank you
    Kristine M.Ledford

  2. Shawna Emmons said:

    Hey there- I stumbled across your web site this morning after taking care of my daughter at 5:30 am. She too has heterotaxy syndrome. I googled “Delaware county, PA heterotaxy.” We live close. I read your story. What a strong boy ! How is he doing? There hasn’t been an update since January that I can see. I’ll keep looking. I am praying for you and your family.

    • Hi Shawna! My sister runs this website and after the New Year she had to make some changes to it or update it. I couldnt figure it out and once I did I had to track down my log in info! Sorry for not updating on the site! I do Update Riley’s Support page on FB pretty often. There is a link to the page on the websites Home page! (Smile 4 Riley ~ Riley O’Brien Support Page)
      Thank you for following Riley’s journey! He is still waiting and will be having his 18th Cardiac Cath next wk. I did update Mom’s Blog if you wanna read more.
      Do You take your daughter to CHOP? Hope Life is being Kind to her!!
      Take Care…
      PS…..I didnt even know these comments were here until today! The website…. from where I access at…. is Totally different then it use to be! I think I like it though 🙂

  3. Shawna Emmons said:

    Hey there- we live close. My daughter also has heterotaxy syndrome. I found your web site just this morning. I’m praying for you guys!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Tag Cloud

%d bloggers like this: