Today Macey was seen by the Lymphodema-Plastic Surgery Dr. at the University of Iowa Hospitals. Apparently he is one of those elusive butterflies we have been looking for. He is one out of five dr. in the US that does this special surgery but I am getting ahead of myself.
Macey is now diagnosed 99% sure with Lymphedema. It was NOT caused from the bacteria that was found earlier, it is not caused by a blockage or anything worse it is Primary Lymphedema or Congenital Lymphedema. Which means she was born with it. For whatever reason it decided to rear its head in September and she is at Stage 3 of the disease. There are five stages. The last two suck.
She is going back in two weeks for one full day of testing. It will show a map of her whole lymphatic system, with contrast etc. It will be a long day, but she is a real brave little girl. We adults need a few of her qualities....lets just say we are not as brave. Then two days later she will go back, and the Dr. will let her parents know if she needs a couple of months of special treatment or if they need to do surgery right away.
The surgery is called LVA for short. She is only the 2nd child he has ever seen. We don't really know anything yet about the length of the surgery till after all the tests, but basically I believe they will try to reroute her lymphatic system so it will work properly....the down side is because it is Primary and not caused from something you can take away, it will be something she will have to deal with the rest of her life.
The Dr. told her momma today there is not a lot known about Lymphedema yet but they are starting to learn more. It is a work still in progress.
Macey's mom has always had vascular/autoimmune problems even as a young girl, Kylei was born premature and now we wonder if it is all tied together. Most likely.
So we have our answer after searching since last September. Around Christmastime we started thinking that was what was going on, we just needed someone who went to medical school to tell us.
We are feeling lots of different emotions right now, we tell ourselves there are much worse things in the world, but when it comes to your child, grandchild it still hurts you.
And so we begin our journey......Stella Rose's Momma
Prayers for all of you during this worrisome time.
ReplyDeleteJanice, Snuggles, Sassy, and Dixie
Oof. Well, having an answer is impawtant, even if it's something rough to deal with. We will keep our paws crossed tight for Macey. I know she'll start to feel better!
ReplyDeleteThank you for the update on Macey, at least now there can soon be a plan of action for her. Such a brave little girl, she knows she has a wonderful family that loves her and supports her. And also her blogville family that sends lots of POTP, prayers and good vibes
ReplyDeletehugs
Mr Bailey, Hazel, Mabel & Mom
Well at least they now know what it is and can deal with it. Poor Macey she is such a brave girl. She is in our thoughts and prayers.
ReplyDeleteBest wishes Molly.
It's a shame they didn't find it in Stage one or two. BUT at least they know what is causing it and perhaps deal with it. They may be just starting to understand it, but at least Macey has time on her side...while they learn more about it!
ReplyDeleteWe will continue our prayers for her.
We Marvel at Macey's Bravery. Now that we know What is causing the problem fur SURE.... we know where to Direct our energy fur Macey. POTP POTP from Us to Macey.
ReplyDeleteKnowing what she has is half the battle. It is going to be a long road, with highs and lows, and we will be there with your for every step and we will have Macey in our prayers every night.
ReplyDeleteSending lotsa prayers and big hugs. And westie kisses for Macey.
ReplyDeleteMacey is such an amazing brave little girl, we can all learn from her! Now at last a diagnosis AND a treatment map that will surely bring this sweet little girl back to full health. It sounds as though you've found a gem of a doctor who is going to make all the difference
ReplyDeleteLots of luffs and hugs to all the family
Loves and licky kisses
Princess Leah xxx
I thought this called for me, Lynn, not Charlie. I just googled this. Oh my goodness!! Dear little Macey ... my love, thoughts and prayers are with her and with all of you, her beautiful family, too. Life is full of journeys. Some good, some bad and they all add up to make our life what it is. It is how we deal with what is sent that's makes us what we are. It seems to me your little Macey will deal with this to the very best of her ability and I'm sure with all the love around her, her life will be full and happy. What a beautiful photo of her with her brothers and sisters. I feel so much for you all. From the first minute I saw a photo of Macey I felt so drawn to her. I think of her as one of my little girls and love her as I love them. Thankyou for sharing her with us and I wish her and all of you as pleasant a journey as possible. It will be a hard road though. My love to you all.
ReplyDeletethat is what we thought it sounded like when you described it. hopefully now you have an answer that can work out a treatment plan to make it less of a problem
ReplyDeleteThanks for the update on Macey, a little girl always in our thoughts. I know it is the smallest of reliefs to finally know what is going on in that sweet little girl's body. Hopefully this doctor can give you the miracle you so desperately need and deserve.
ReplyDeleteLove Noodles
It's better to know what u r facing but we r so sorry brave and beautiful Macey must face this.
ReplyDeleteRetro rover
We wish the diagnosis had an easier route to follow, but at least you finally have a path and a plan. We will continue to hold Macey in our thoughts and prayers. She is young so hopefully medical research will do something good in the years to come that can help her have a very good life.
ReplyDeleteWoos - Phantom, Ciara, and Lightning and Mom
Hopefully with a diagnosis you can move forward. Sending that cutie and you all hugs.
ReplyDeleteIt is good to know the name of the beast so you can get your soldiers together to fight it. But it is sad to know she will always have to deal with this. Hopefully the doctors can give her good treatment options to lessen the impact on her health and she will continue to be a happy child and get on with the business of being a little girl.
ReplyDeleteYour Pals,
Murphy & Stanley
Remember that you are not alone in this journey. So many like me are out here, unseen and are sharing it with you, and sending lots of prayers and positives vibes for peace and all the needed courage the 'adults' need!
ReplyDeleteThe photo of them doesn't touch the surface of ho precious they all are to you. Your beautiful daughter will be in my husband and my thoughts and prayers as you get through this as a family.
ReplyDeleteWe are glad Macey finally has a diagnosis, but, like you, we were hoping it was something easier to deal with. Macey is certainly a very brave girl. It's great she has a loving family to support her. We'd like to send you a warm hug, purrs and paw taps of support.
ReplyDeleteThank goodness someone found what was wrong,, Now they will put their heads together to fix her! And were counting on her getting fixed.
ReplyDeletelove
tweedles
I've been praying for Macey and I will continue to keep her and all of y'all in my prayers.
ReplyDeleteAroo to you,
Sully
Your daughter takes beautiful pictures but it must be easy with such beautiful subjects. We will keep our paws crossed that you will be able to manage Macey's condition.
ReplyDeleteSending you hugs Macey
ReplyDeleteLily & Edward
Oh noes. Well at least you know what is wrong, and now you can start to make it better. Not a fun journey at all, it sounds like. Butts lookie at how adorables Macey and her sibs are!!! Lots of love and support, and lots of POTP from Blogville should help. Paws crossed for all of you, and gives Macey a big slobbery kiss from me! (you can do 'slobbery' right? ☺)
ReplyDeleteKisses,
Ruby ♥
We will keep Macey (and all of you) in our purrs and purrayers. She is a brave little girl!
ReplyDeleteWe are so grateful for the doctors and nurses that will be taking excellent care of sweet Macey! I bet as hard as it is to have her not well, knowing what it finally is has to be a step in the right direction.
ReplyDeleteoxox
Daisy
We are sending lots of POTP for comfort and for the doctors to create a detailed plan of action.
ReplyDeleteHugs!!
I hope this journey ends with the best news.... I wish i could take away all the dark clouds, the fears and the mixed emotions... All paws and fingers are crossed for your beautiful girl and your furmily.
ReplyDeleteeasy rider
Awww. Such a sweet photo and such sad news. SO thankful you found the right Dr. Peeps to help Macey. Hope you get some good news about management.
ReplyDeleteOh gosh …we are amazed at Macey's bravery as well. I know it must be so scary, but I'm glad you now have a definitive answer and can focus entirely on her treatment and recovery. We are all with you and will stay by your side through the whole process.
ReplyDeleteXOXOXO
I'm so glad you finally got a diagnosis. Sending prayers that it all eventually gets better for brave Macey. And that is one beautiful photo of the grandkids. Love how Macey is surrounded by her siblings.
ReplyDeleteHugs from NJ, Patty
xoxo
We are relieved to hear that you finally have some answers. Macey is one tough cookie to have endured all of this so far and we know she will continue fighting while doing it with the grace and courage she's shown to date.
ReplyDeletePrayers and love to all!
Hugs,
Lily Belle & Muffin
That's a beautiful picture....
ReplyDeleteI truly understand the agony your family is going through right now because we are facing a similar situation with our daughter. Even though she is grown with 2 small kids of her own, she's still our baby girl who was near death not even two months ago. She still faces months in a nursing home while they determine if amputation of her leg is necessary. Lupus rears its ugly head when you least expect it as did Macey's condition. It's very hard when the future is so uncertain. Macey has her entire life ahead of her and I'm saying lots of prayers for her and will always keep her in my thoughts.
We're happy that this wonderful doc was able to determine what has been affecting Macey. It sounds like it may be a tough road ahead but Macey sounds like a fighter and she has a wonderful family and caregivers doing their best for her. I'm sending Macey some good pug juju and we'll be keeping your family in our thoughts.
ReplyDelete-Love,
Sid.