Wednesday, November 19, 2014


One is grumpy---- one is not.   I would have been grumpy after a day of MORE needle sticks.  Before I go any further in my update this is what Macey's momma Kylei had to say on her facebook page...."Macey said thank you so much to all my moms blog friends for her gifts and cards it is beyond sweet."  Yesterday Macey even received a package from Angel Pip and his momma and her granddaughter.  People everywhere are thinking of our Macey.

Okay so they go to Blanks Children Hospital.  Momma said a big prayer the night before cos she is not so good about driving in rush hour traffic on the interstates around the capital of our state.  Ugh...Plus it had snowed some the night before so the roads were still a little icy in places...double ugh ugh......they had to leave in the early morning hours and it was only 7 above.......we stayed home in our warm beds and pj's.....

They arrive safely barely on time, but safely and the hospital looks pretty magical.  It is painted inside like a wonderful place in the old time Grimms fairytales books, a little of german magic etc.....Macey and Kenna thought it was pretty cool.  There were wishing wells, gifts shops, and food places hindsight they should have stopped and thrown about $20 worth of coins in that wishing well instead they hurried by it!!

The staff were very friendly and because it was Macey's first time to visit the head doctor at the Diagnostic Clinic they had to ask her Momma, Kylei about 500 of the very same questions she had already answered 500 times ago.  Macey and her sister mostly bounced off the walls, and our Momma forgot to breathe several times cos hers was anxious. (she hid it well though)

So first Macey was weighted and measured and her leg and foot was measured.  Then two ladies came in and talked about her health history and the gazillion tests she had already had.  Then finally the GREAT OZ himself came to see her.  He must have been about 100 years old but Mom said everyone liked him right away.  Mom was a little worried though when she did not see his bag of magic tricks or at least a magic hat.  Instead we saw a stethoscope

He shared that it was very rare for a child to only have one swollen leg and foot.  He usually sees children with two swollen legs and that is usually due to a heart or kidney issue.  WELL we reminded him Macey is trying for the Guinness Book of what did he expect??  He asked his own special set of a gazillion questions........and then he started to make a plan.

OUR mom is a list maker and when she makes a list she starts IMMEDIATELY to mark through each item.  She does not put it up until tomorrow.   WELL we found out real FAST that is NOT how Dr. Elliot does his list.  NOSIREEE.....He makes a plan and then makes another plan and throws  in a few more to go with it.

Mom suggested he start on it before lunchtime....but of course that was impossible because the ultrasound machine was booked until the 12th of never.  On that note Mom could have applied for a job on the set of  Thomas the Train cos of the smoke coming from her ears.....

Dr. Elliot wants an ultrasound done to see if there is something blocking the lymph nodes in Maceys groin, or stomach from working right.  He also ordered all kinds of new blood work  we had never heard of just in case her Momma had forgotten to tell him Macey had been on an expedition to South America and got bitten by a giant flying insect. 

So we got all the bloodwork done, but the ultrasound will be scheduled down here in our own little village.  Hopefully this week.  If that is okay, then I guess we will make a new list with Dr. Elliot.

One thing we have all learned in these 11 weeks is when it comes to medical mysteries, nothing is fast, there is no magic hat, or wand just waiting around to tell you the answer.  WE do think the magic lies within our family though and how we have tried to pull it all together, it lies within our church families, and our blogville families.  Perhaps we cannot final the true answer quickly but between us all we will at least pave the yellow brick road with loved and caring.

Stella Rose and her Momma


  1. Sending love as always to your whole family and especially Macey. Go with the flow young Macey and Macey's mom. Really do wish there was a magic wand out there for you. Chins up

  2. As frustrating as it is we are reminded that "for everything there is a season". Keep seeing the doctors and running the tests and eventually they will eliminate enough stuff that they will figure it out. In the meantime you must so the most difficult thing and put your faith in God to get this thing figured out. Every time we start reading an update we are hoping with everything in our being that Macey will have a diagnosis and a good prognosis. We're all behind Macey, you and your family.

    Your Pals,

    Murphy & Stanley

  3. I'm learning very QUICKLY that nothing moves QUICKLY in the medical field. You would think though that when it comes to a child like Macey, the doctors would try to speed things up a bit to avoid all the anxiety. Our daughter is grown with 7-year-old twins of her own, and has been very ill for almost 3 years now. The doctors have diagnosed 2+ different "things" going on, all with no cure. But we know there are at least treatment plans out there but the doctors are still trying to come up with one. In the meantime she's being pumped full of medications that are turning her into a zombie. And her babies are suffering the most.

    Back to Macey.....all my prayers are with her. Not only for a diagnosis, but also a cure to whatever is happening. Children shouldn't have to go through all that she is going through.


  4. The magic of love will pull you all through! We keep everyone constantly in our thoughts and prayers.

    Our Mommy is a list maker too. It's the only way to remember everything!

    Lily Belle & Muffin

  5. I hope so much that the great Oz can help Macey and I also hope that he can chase all bad things away. You are in my thoughts every evening before I go to sleep and I always wish that the next day will bring good news to you.

  6. The medical world is full of delays! They repeat the same tests over and over again and wonder why things are so expensive. But we hope things will turn out all right VERY SOON! Stay strong!

  7. sadly medical people don't seem to move fast - our Mom has been going to one specialist after another for the last six months and still has no answers yet either.

  8. Our mom knows all about the slow machine of doctors. She has been trying to find a solution to the numbness in her legs since February.

    We hope you get some answers soon for Macey.

  9. Oh My! You would have hoped they would have been prepared to do further tests while you were there - so frustrating. we keep thinking and praying for an answer and resolution soon for sweet Macey
    Mr Bailey & Hazel
    Pee Es
    Mom wants to know if your mom has a favorite color

  10. Some where there must be a bag of magic to figure all this out and get Maceys foot all better.

  11. Mom Kim here – I know the word frustrating just doesn’t begin to cover the feelings you all must be having right now – you probably left that feeling behind a few weeks ago – a new word for BEYOND frustration needs to be invented. I know if it were me – I’d be wanting to punch a few holes in the wall. Although having my Beaglebratz around me does help a whole lot especially when snuggling on the couch – if that isn’t possible, sometimes just picturing that helps believe it or not.
    ANYWAY, I really can imagine what you are going through – I hate dealing with doctors and all the red tape they put the patient and family through. I realize they just want to be thorough and make sure they don’t miss anything BUT sometimes, it is just a bit too much! We all here continue with our good thoughts, prayers of healing and peace to Macey, her family and to all of you.
    Mom Kim, Shiloh-Lord of the Manor an'Diva Shasta

  12. Gosh, all I can say is Macey is SO BRAVE! We are all praying for her. I'm glad she likes her surprise. Angel Pip and his little sister picked everything out. Hope the gifts brighten her spirits for a little while!

  13. Tell Macey's mom she is very welcomed and we just wish we could all take turns helping you in person...bless your hearts you have had such a long grueling 11 weeks. Lets hope and purr all of Dr. Elliott's wisdom will work magic with his special tests and blood work.
    Sending a ton of hugs and purrs each day
    Madi and Mom

  14. I guess spending most of my adult life in the military makes me more pragmatic about waiting for this and that. My view is you've just seen a facility that is clearly focused on finding the answers and then the cure. I have high hopes for Macey and please be patient. This is clearly a case of "slow and steady wins the race". In the meantime, she and all of you have our prayers and best wishes headed your way!!

    Love. Gampy

  15. I can't believe how brave little Macey is... and how brave you are all being. I think this doctor is going to find the root of the problem... I think he is The One.

  16. Unfortunately, they can never tell you what it is. Just what it's not until there's nothing else to eliminate. Poor Macey, just keep her (and your) spirits up.

  17. Sendin lotsa prayers for Macey and all of y'all.

  18. We are SO very VERY sorry that Answers were NOT there Instantly...
    We are sending MORE and MORE POTP fur Sweet little MACEY and a dose of CALM and COLLECTED... fur those who certainly deserve it right now...

  19. We are so very sorry you don't have your answrs yet it must be a nightmare but we are sure that hospital is a great one. We are sending our best wishes

    retro rover

  20. So very very sorry that your answers did not come. I AM excited that there is a GAMEPLAN now!!!! Also glad that the doctor is running bloodwork that is out of the normal to look for the rare and unusual so that means he is thinking out of the box. Hope the ultrasound goes well.
    Take care all.
    Marty's Mom

  21. We are continuing to send virtual hugs and tons of POTP.....Macey is the strongest little gal we know!!
    Lot of hugs and snuggles!!
    Dory, Jakey, Arty & Bilbo

  22. Well, just hang in there, they will get and answer and a plan....yep Dad has been there it takes time.

    The Mad Scots

  23. Ugh still nothing, I hate that! However, the Great and Powerful Oz fellow seems like he might know a thing or two. I'm glad you got our card. Continued prayers for everyone.

    Aroo to you,

  24. OMD!! You poor things .... Surely there will be answers soon. In the mean time all we can do is hope and pray and we are sure doing that. Little Macey is on our minds constantly.

  25. Medical issues can be so frustrating! Glad Macey is still smiling. :)

  26. So sorry you still have no answers! I hope she can get in for the ultrasound this week. It's so frustrating, waiting for someone to come up with a plan! (Love the end of your post!)

  27. My mom thinks of Macey everyday and says prayers for all of you. She said she'll have to include lighting a fire under the doctors now. It does sound like magic happens in a hospital that looks like that!