Thursday, April 23, 2015


Update on our MACEY:
WELL, friends it has been a bit of an uphill battle since we received Macey's diagnosis last week.  In a perfect world after we walked out of the University  all the necessary pieces for her treatment would have just fallen IN PLACE.

It did not.

The first battle that we faught and lost was trying to find a local pharmacy within an hour away to measure her for her compression hose.  Thigh to foot.  No such monster exists for a child.  Rare also means frustrating and expensive.  $200 for ONE leg, and she will need between 6-8 a year.  After all she is a child, who is growing and likes to play outside.  Each new hose, they will need to remeasure all over again.  BUT first we had to find the HOSE.  So one week has passed, and still no hose.  We cannot order online because she has a prescription and they have to be measured.  Her mom talked to their insurance and they did find one place that specializes in items people need after special surgeries, so they will more than likely be able to do it.  But first the insurance company and the PLACE need to have some kind of discussion over who pays first, etc. etc. etc. etc. etc. and then maybe in 15 days or so, there will be some type of treaty reached and the hose can be measured and ordered.   WHEW!!!!  (Someone asked on here about her leg, the glands are missing from the top of her left leg, I told you wrong and said the bottom.)

The second battle that we thought we had won, was finding her best place for Physical Therapy. Luckily we found a physical therapist within 25 minutes from Macey's home that was trained  in Lymphedema care of adults and she was able to take Macey as a new patient.  AND since it is located in a hospital the hospital told us it would take the insurance.  So Macey had her first appt. yesterday, and loved it.  Macey and her Mom could tell Lily was very knowledgeable about  Lymphedema even though the youngest child she had ever worked on was a teenager, not a 6 year old.  She showed Kylei how to do a morning massage for Macey lasting 30 min. and a evening massage for Macey lasting 30 minutes.  WHEW!!!  Mom has a hard time remembering 6 drops a day in our eyes and she does not have four children.   But Kylei felt so happy when they left feeling like FINALLY after all those months they were started down the right road.

UNTIL the wicked witch from the insurance company called and said LILY IS NOT IN OUR NETWORK THE HOSPITAL WAS WRONG.   After much discussion with the insurance company and my big sister Kylei they decided more facts would need to be known and saved it for a new day.  Plus it was 4:30 and the wicked witch needed to fly on her broomstick home.

Macey's Dad works for a well known company that has very good insurance but because of all the insurance changes in this world, even good insurance has turned rather witchy.

BUTT for every road block we face Blogville comes through and brings a smile to our Macey and her families faces.  E-mails, cards, and very special presents.  It was rather hard for us at first because most packages that come to our house, belong to US, but lately we have learned how to SHARE.

Last week one of our bloggy friends knew Macey had to go back up to the hospital to see her brilliant than the average bear Dr. Chen, and she thought Macey might need some special power.  After all what six year old wants needles stuck in between their toes.  So a box was sent from Walter and Millie's Momma at and this was inside.  Oh folks you could feel the power and magic just radiating from the box when Macey was holding onto it.  It was a purple and pink super girl cape with the letter M right in the middle of the back. ( In this picture you cannot see it very well, but tomorrow after more pictures load we will show it to you.  Something is wrong between the camera and computer.)

It made us all laugh, and helped Macey through a tough day.  Thank you dear friends.

The world seems like it is upside down, and much different from the time my Momma grew up in.  Coming to blogville, not only gave her a safe and happy place to land, it brought us countless friends, and joy.  We all have days when words can hurt us, our feelings are fragile, the important thing to remember is why we came here, and how much we are needed here for families just like Macey's.  We are not like the world on the outside, we are so much better than that.

You will never believe what we are going to tell you about tomorrow.
All our Love, and Thankfulness.....Stella Rose, Maggie Mae, Angus Mac and Momma


  1. Insurance and all dat can be so frustrating - sometimes it just feels like adding insult to injury.

    Sending Macey (and all of y'all) big hugs and westie kisses.

  2. Sounds like your family is on a roller coaster...and needs to get off! We hope the wicked insurance witch...turns into a fairy witch!!

    Blogville is a super place....overflowing with love and friends!!!
    Dory, Jakey, Arty & Bilbo

  3. Insurance sucks bigtime these days, and mostly when you really need it! Bur our Mom said to fight like heck and keep on fighting. Macey needs her humans to fight for her needs. It won't be easy, but those bad peeps will eventually give in. Just too bad you have to fight so hard.

    Millie and Walter's Mom was so nice to do that for little Macey. Please give her some sloppy kisses from all of us.

    Woos - Ciara and Lightning and Mom

  4. We think we see a super power glow around Miss Macey. Look at all those cards she got too!

    We're glad she at least got to visit with the PT and hope the insurance company comes to their senses about coverage of the PT. We still have our paws crossed that you can find the hose she needs before too long.

    We're sorry we forgot to include something for you three in Macey's package but are glad you understand. Our mom was in a hurry to make sure she got her package before her big appointment.

    Thanks for sharing Macey's picture with us and we look forward to some more.


    Millie, Walter and mom Cindy

  5. Darn those Insurance Companies !!! We just do NOT understand why they have to make thingys so DIFFICULT and have all these Rules when someone's HEALTH depends on them being COOPERATIVE and SENSIBLE.
    We hope that the HOSE can be found and that they do the job fur our sweet girrrrrl.
    OMD we LOVE the Cape from Millie and Walter's mom. THEY are very special and we are SURE that it is FILLED with POWERS for Macey.

  6. We so understand the frustration that you're going through with the compression stocking and the insurance company, etc, etc. Our dad still has to call them repeatedly to make sure his stuff gets sent to him on time. Huge hugs to all of you♥

    Love ya lots♥
    Mitch and Molly

  7. I finks Macey is a supergirlie wiv special superpowers! The cape is pawfect for her.
    Sending you all lots of luffs and hugs
    Loves and licky kisses
    Princess Leah xxx

  8. Howdy mates. Well to us those insurance companies sure suck. We wished you lived in Oz cause we know you wouldn't have these worries about insurance and stuffs. Macey, you little darling, we send you love and hugs. We hope all goes well for you. Did you know our mum is caring for a little eight month old girl called Macie and we hope she grows to be as brave and strong and beautiful as you are. Slobbery love to you too, our little puggie mates and all in your family. You are right. Blogville is the place where love and support is only a post away. No worries (especially for you all) and LOVE, Stella and Rory

  9. It's sounding more and more like those Good news/bad news stories. So happy Blogville can help.

  10. Well if it isn't one thing it's grrrrr. We keep Macey in our daily prayers and will continue.

    Aroo to you,

  11. Wow! We know all about the wicked witches of the insurance kind! Our Jessy has narcolepsy, and needs to take 2 of her pills a day just to feel like a normal human being and be a able to work and drive. But the wicked witches decided they would only pay for 1 a day. We fear insurance will only get worse the way things are going these days. What a mess!

    We hope and pray Macey will be able to get ALL the help she needs!

  12. The sad thing is that anyone with a serious medical condition ends up needing to be an expert in insurance coverage too. How frustrating! Good thing Macey is a super hero cuz she will need all her powers! Yes, Blogville is a special place. Sometimes we need a reminder of that fact! Hoping tomorrow brings something good for you and yours!

    Your Pals,


  13. Oh gosh, I'm so sorry for all this, but you are strong and so is Macey. Keep fighting for her and I know this will all work out. Sending you much love and support! XOXOXO

  14. Insurance companys are a pain in the neck.. Sometimes their left brain does not know what the right brain is thinking,,,!
    Keep bugging them,,,, remember,,,,"the squeaky wheel gets the grease"

  15. Insurance can be soooo frustrating. We will keep our paws crossed for Macey that all things will fall into place
    Mr Bailey, Hazel & Mabel

  16. The insurance companies are so heartless. Can the hospital help with the hose? We are saying daily prayers for Macey and your family

  17. Keep smiling Macey.
    Lots and lots of luvs x x x

  18. Your medical system doesn't make it easy does it? sorry you have to face this second battle. Sigh! Hugs.

  19. Your family has such strength. You have sure been through the mill. We sure do hope things work out well for whatever Macey needs.

  20. It is one challenge after the other and you have dealt with it with grace and hope. You're in our thoughts each day and Abby sends a big furry Labrador Hug.


  21. Thank you for the update. But I'm so sorry that the insurance is being such a big difficult hurdle. I hope that you can find the hose and that the great PT is indeed in your network. Arghh. We are all thinking of you, fighting these battles for sweet Macey.