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 https://birdbrainsanddogtales.wordpress.com 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