. . . luv 'n stitches for our tired old world

the KWH iPad Show #23 πŸ’œ healing hope for HPP

frowning Mac computer

Hello & Welcome
to my 23rdΒ episode of the
KWH iPad Show!

Today’s feature isΒ our road trip to Winnipeg
… in pursuitΒ of a healthier tomorrow πŸ™‚


Asfotase Alf

And we’re back! … Back home, after our whirlwind road trip to Winnipeg’s Health Sciences Centreβ€”where we finally met Dr. Cheryl Rockman-Greenberg in person and received our first month’s prescription of Asfotase Alfa!!! Dr. Greenberg is the renowned driving force behind clinical trial research for hypophosphatasia (HPP). Over the past decade, other doctors have allowed Husband’s paperwork for obtaining HPP treatment to fall short. But that all changed when we found Dr. Greenburg and Dr. Christopher Lee (our personal physician). We thank God for enabling them and blessing us with their dedicated effort to help make this medical mission trip possible! ❀

As well… I’m back to feeling like my usual selfβ€”after suddenly feeling mysteriously “zapped” of all energy for the past 5 days. Weird :-/ DraggingΒ myself around and feeding my facebook page was about all the strength I could muster. At least theΒ facebookingΒ was fun… So it’sΒ sure great to be backβ€”in more ways than one!

Here are a few iPad photos of memorable moments and prairie highway scenery from our trip…

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Proverbs 16:9

We set out before sunrise in our 2002 Toyota Celicaβ€”which still runs bright like its sunshiny paint colour πŸ™‚ After driving 10 hours, we stopped for night at the Yorkton Days Inn in Saskatchewan. During 2 days of medical testing in Winnipeg, we stayed in an east-facing Canad Inns room (see 13th floor sunrise photo), conveniently attached to the hospital. We also got together with family and celebrated one nephew’s 13th birthday! The last time we saw family was last summer’s trip to the Niagara Peninsula. The time before that was our Thanksgiving 2013 road trip… Fun stuff! And finally, an especially yummy thanks to our sisters, for filling our bags with their homemade goodness of cherry jam, spaghetti sauce, salsa and cookies… Plus, one perfectly purple cupcake-shaped handmade soap! πŸ™‚ ❀

Homeward bound, we drove straight through for 14-hoursβ€”eager to refrigerate our precious HPP-fighting Asfotase Alfa cargo… Now we’ll wait and see how long it might be before Husband’s daily needle dosage shows signs of healing πŸ™‚

Introducing… my Bramble❀tini Heart knitting pattern

–— πŸ’œ Have you thought about buying a copy of my knitting pattern today? πŸ’œ

β™₯ β™₯ β™₯

Thank you for visiting my Knitting With Heart blog today!
I’d love it if you’d also stop by and β€œlike” my Knitting With Heart facebook page.
Feel free to share links to my posts πŸ™‚ I look forward to hearing from you!

Hope continues… β™₯ Jackie


27 responses

  1. Lisa

    It was so great to see you both again! So excited to see how Asfotase-alpha is going to change your lives!! ❀

    Liked by 2 people

    October 2, 2015 at 11:34 pm

    • Yes, really super-exciting! And so wonderful to see you guys againβ€”now a mere 14 hours away πŸ™‚ β™₯ ❀


      October 2, 2015 at 11:54 pm

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  7. Good news,dear friend.Take good care πŸ™‚ ✿ڿڰۣ(̆̃̃ღ❣

    Liked by 1 person

    June 6, 2016 at 7:46 am

  8. You have so brilliantly connected knitting and its medical application!I don’t keep a FB account to view it there too.Happy Monday πŸ™‚

    Liked by 1 person

    June 6, 2016 at 7:51 am

    • dear, sweet Doda ❀ Thank you for your very kind words… πŸ™‹πŸ’›πŸ’šπŸ’œπŸ’™β€οΈπŸ’• πŸ™‚ β™₯ ❀

      Liked by 1 person

      June 9, 2016 at 5:03 pm

  9. My pleasure!Best wishes to you πŸ™‚ β™₯β™₯ β€»

    Liked by 1 person

    June 9, 2016 at 5:18 pm

  10. Light Ministry Blog

    Sounds like a fun trip. Glad you got your meds…


    Liked by 1 person

    January 31, 2017 at 9:53 am

    • Thanks Steve πŸ™‚ It really was a wonderful trip! And we’re so grateful for Dr. Greenberg’s warrior effort to make that miraculous medication available to us!!! I’ll need to blog an update soon… But after one year, the pharmaceutical company cut him (and all their HPP patients) offβ€”allowing HPP health to dwindle during the pharma’s gov’t/insurance price haggling process :-/ Yet still… may God bless the ongoing efforts of our angel warrior of mercy Dr. G, as she continues to fight and has managed to squeeze a few additional months of medication out of the pharma company. No one knows if/when there’ll be more, though. So reducing injections from 6/week down to 2-3 buys more time. Every bit helps, but this is not sufficient for sustaining the progress gained in that first year… Truly a heart-wrenching shame :-/ 😦 πŸ˜₯ So now as always, it’s in God’s hands and He will see us through! Please join us in prayerful hope! And may God sustain your health, as well! πŸ™‚ πŸ’œ Jackie@KWH

      Liked by 1 person

      February 2, 2017 at 11:07 pm

      • Light Ministry Blog

        Certainly so. I know I’ve had to switch or even drop some meds. due to the fights between insurance and Phamras myself…it isn’t any fun! All the best of luck in your fight, Jackie!


        Liked by 1 person

        February 6, 2017 at 9:38 am

        • Thanks Steve ❀ Yup, meds are a way of life for so many people. My husband's medication was part of a clinical trial. So now, we all know how extremely well it works and the pharma company wants to get paid for developing it. Hope/pray they'll come to an agreement and make it available for regular prescriptions asap πŸ™‚ πŸ’œ Jackie@KWH

          Liked by 1 person

          February 9, 2017 at 11:24 pm

          • Light Ministry Blog

            Oh I hope so for his sake…and yours. Drug and insurance companies don’t get along too well anymore, so things can get tough out there! And it’s particularly hard to deal with at our ages when we need certain things to keep going!

            Liked by 1 person

            February 10, 2017 at 1:43 pm

            • Yup… gotta keep going and just trust the Lord’s perfect timing! Quite maddening though, to know the remedy is sitting right there yet inaccessible due to red tape! :-/ πŸ’œ Jackie@KWH

              Liked by 1 person

              February 13, 2017 at 12:04 am

              • Light Ministry Blog

                Amen to that!

                Liked by 1 person

                February 14, 2017 at 1:24 pm

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  12. I have a rare genetic order called CPT Deficiency!

    Liked by 1 person

    May 6, 2019 at 12:34 am

    • awe… Sorry to hear that, Tamara ❀ Yet despite life's difficulties (such as your CPT, hubby's HPP and my RP), we may all graciously agree that God has a way of using our rare genetic disorders toward molding our character and drawing us near to Him! πŸ˜ŽπŸ™πŸŽΆβœπŸ’œ Jackie@KWH

      Liked by 1 person

      May 6, 2019 at 5:27 pm

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