Children’s Hospital

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21 Responses

  1. mamadeano says:

    Sorry to read your sucky news. Can’t imagine the rollercoaster you are on. I enjoy reading your blogs, and sometimes the most honest are the best. Hoping that the recovery times for surgeries are shorter than you hope for. From what I read, your boy will be up and walking again, If he’s mum’s grit and determination for him to succeed has any bearing on it anyway. Keep on keeping on.

  2. Denice Albert says:

    We’ll be at Mass General in November with Hayley having back surgery. I cry again as I read your story cause its all too familiar.

  3. Patricia Allen says:

    Lots to think about and plan. A thought, if Liam has a winter break and the surgery could be planned then, we could take him for the week or more. We could probably arrange for Pop to come up for a week to help when Aidan gets home. Hoyer lift to help move Aidan? We’ll talk.

    Pat Jackson Allen

  4. Ruth Bowie says:

    A vacation? A holiday? A break? Co Kerry is always here for you guys. I know it’s a long long way away……….but it’s here. Thinking of you after that long sucky emotional day.
    P.s i mean this in the nicest possible way but where I work the nurses would describe you as ‘hardcore’- the well informed ones are always a challenge!!!! I’d be same 🙂 x

  5. Praying in the suckiness with you. And you could totally OWN a resident. I would pay to see that…and I’d pay in chocolate croissants. 🙂

  6. trevorsmommy says:

    You make me smile. Always!

  7. Beth Woolsey says:

    That is the SWEETEST picture. Love, love.
    And you are funny and charming and lovely. What a privilege you grant us by letting us see inside your heart. Thank you.
    Sending prayers for all you and especially your sweet boy.
    xo,
    Beth

  8. Kristen says:

    Huge Prayers, Hugs, Positive thoughts etc…. That is a lot to take in. I was looking up stuff and googled Children’s hospital pictures. (Trying to see what a VEEG room looks like) Guess who’s sweet face was in the line up 🙂 I looked up durable medical equipment too (beds being one of those) If he can’t sleep in a regular bed then they have to give him one. And……. because of the IHOC they tend to be handing everything out and amending policy changes fast. DME was recently changed for the better at the end of August.
    ps: The good news made me LOL and got me excited!! Where is Bertucci’s and Starbucks?? All these times we have gone down and we have only found CVS, Au Bon Pain and the Basement Cafeteria’s. 😉

  9. Jim says:

    Not sure if the bed you are referring to is the Hill Rom Clinitron, if it is, Dr Spine and Dr Hip should be able to write the correct scripts for Aidan to get it. Either way, it appears you are a fighter, I am too, when my wife was denied what I thought she needed/ deserved, I called the case manager and simply told her, I am going to be the biggest pain in the a_ _ advocate you have ever dealt with, I have all the time in the world to make sure my wife gets what she needs so save us both the time and aggravation. It worked, as you know their goal is to wear you down so that you just throw up your hands and give up, don’t give up, fight them and get what Aidan deserves!

    • Jim – This is good info. Didn’t know the script would help for the bed but that sounds appropriate. I actually have a good DME team that I have no problem staying on top of and making sure things are moving in the right direction. And thanks for the info about Victoria. I’m soooo excited!

  10. Christie says:

    Oh, poo! I don’t like this sucky news at all.
    Also, I miss you. Can we do coffee? I have kid-free time on Mon and Fri mornings. Starbucks? At “your” Target? Emailing you….

  11. You are an amazing woman Heather. You truly are! I admire greatly the fact that even through the stress, frustration and sadness you can still insert humor. That takes a strong person. Though humor won’t fix everything it still helps us to heal at times.

    I hope this upcoming stress passes with as much ease as possible.

  12. Bray's Ma-Ma says:

    My son is 6 1/2 and also sees a Dr Hip @ Children’s Boston. Don’t know if it’s the same Dr Hip you see, but we like our Dr Hip. He is due this month for another follow up and we are hoping his hips are stable. There’s a very good chance hip surgery is in his future. Not something we’re looking forward to. Good luck with everything.

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