Hands and house

Hands and house

Wednesday, August 23, 2017

Lemonade




       "When life hands you lemons...make lemonade."




   We have been sitting on some news that has kinda blindsided us over here...hitting summer fun hard in light of it too. A few months ago Miss Georgia Mei came to us and said, "Look what I can do!" With a big grin she swung her sassy little hips back and forth and a huge, loud "crack, crack, crack" came out...like the sound of popcorn only louder and more clear. Doug quickly said, "Maybe you shouldn't do that!" followed by, "we should probably have a doctor look at that."
      Georgia said that she wasn't in any pain, so I figured we would just showed the Pediatrician at our next appointment...but we began to notice the cracking when she sat down, climbed onto something and sometimes just when she stepped funny. So I loaded her up for the next appointment and off we went.

     As soon as the doctor heard the cracking she exclaimed, "That is so not ok..." plopped Georgia up on the table for an exam where it was discovered that Miss Georgia, pain free could place her foot into her armpit (think right foot into right armpit) on both sides. Her sweet legs also rotated WAY farther than they should to each side. We were sent immediately for xrays and knew that our doctor was deeply concerned about structural hip issues but also about a possible connective tissue disorder.

    That next Monday, we had a stat opthamologist appointment (because of the connective tissue concerns which can affect eyes). Driving in, I knew we would probably get a call concerning the xrays and what they found. In praying I told the Lord, "If it is bad news, you know I need to see you quickly in this..." At the eye appointment, they dialated her eyes and as soon as the nurse left the room, my phone rang....we had a diagnosis of bilateral hip dysplasia which our doctor described as "a big deal." Literally, as soon as I hung up from the call, my phone buzzed with a message from my friend Leah saying, "I'm thinking of you and Georgia and praying for you." The phone buzzed again and was an email from another friend saying, "I just want you to know that you are an incredible mother who stands in the gap for her children." I literally had time to read those, take a deep breath and then the doctor walked in....but honestly, it was just enough for me to hold onto knowing that the Lord was there, He hadn't dropped us, He would carry us.



     So...many Xrays, an MRI, consults with Shriners, Children's Hospital of Philadelphia and Children's Hospital of Los Angeles...we have a plan: Miss Georgia has bilateral hip dysplasia (DDH). Basically, this means that for some reason her hip sockets did not form correctly. Typically, this condition is found at birth and can be corrected with a hip brace...but the story is pretty different when it is caught at 10 years old.


Xray of normal hip sockets




Georgia's hip...the other look almost identical.



So...Miss Georgia Mei needs  Bilateral Triple Pelvic Osteotomies and possible Femoral Osteotomies (they will not know about these until they are in surgery and can rotate her bones around). This means that her pelvis will be broken in 6 places and puzzle-pieced together with plates and screws. Both femurs may possibly also be broken, screwed and plated to help the head of her femur fit into the new socket.




We will be going for a consult/surgery plan appointment on Sept 6th to Children's Hospital of Los Angeles and surgery Sept. 26th. Why all the way there? Because it is that complicated. At 10 years old, Georgia's growth plates are close to closing and she needs someone who has specialized in older child hip dysplasia. The 2 top hip surgeons at Children's Hospital of Los Angeles have agreed to do her surgery together to give her the best outcome. As far as the future goes...Georgia is at high risk for early onset arthritis and will need a complete hip replacement. This will be a lifelong journey for her.

The surgery is a really big one. So big that there are differing opinions on whether it can safely be done in one surgery or needs to be done in two. We will be making that decision on the 6th.





So, we are sharing this news to say that we desperately need your prayers...on so many levels this is hard and scary. We trust that this is not a surprise to God and that He will carry us and our sweet little girl through. If you are interested, here are some specific ways that you can pray:

* For Georgia's joy to be protected. Georgia is such an incredible girl who loves the Lord in a way that is so deep and so beyond her years. More than anything we want to protect that sparkle in her.

* For protection of her heart. She just had cardiac clearance, her heart is doing really well right now and is functioning the best it ever has! Still, she has a major heart condition and this is a really big surgery that will tax heart entire body so prayers for her heart will be huge!

* For Georgia as she processes. Unfortunately, at one of the first consults the doctor said, "Georgia would you like to see you hips?" then went on to explain what was wrong...and said, "So we will cut here, and here, and here..." sweet baby girl's eyes filled with tears and turned to bear hug me. They kept going and she heard it all...the surgery, 6-8 weeks in a wheelchair, then a walker, then crutches. She has had a hard time getting to sleep and is asking about these details each night, usually while wiping away tears.

* For wisdom in how to get Georgia home. We live 15 miles out a VERY bumpy dirt road. Honestly, I cried the whole way back down that road after diagnosis thinking about trying to drive a child with hip surgery back home. There is an airstrip at the camp where we live so we will be trying to figure out if there is a way to fly her home but really need the Lord to line those details up.

* For us as a family as we are in different locations. This will be really hard, our family is really close and I hate the idea of being split up for any length of time. We don't know how long we will be separated yet. Prayers especially for Zeke as he still thrives best when we are all together.

* For Zeke's heart. In the midst of this, we also have found out that Zeke's pulmonary valve has failed and that he will need heart surgery at some point. We are currently "pushing him into heart failure" until his arteries get bigger and a larger valve can be placed. They could do the surgery now if need be but would like to wait if we can. He has a cardiac MRI on Sept. 13th which will give us a lot more information about how he is handling having a non-functioning valve.

* Lastly, for safety as we travel. We have 6 medical appointments in the next few weeks, 3 which are in different cities, 2 that require flights. We would love it if you could cover those in prayer.

This hangs above our stove


So...why title this 'Lemonade' because through all of this, we have learned just how deeply blessed we are both in the love of our families and in our friendships. You all carry us in beautiful ways. It is difficult to see how this can be good and so beyond anything words can describe to think about handing our daughter over for something so huge...but hard things do not change the goodness of God and I know that in the midst of it all He will keep showing up.  



4 comments:

Megan Spears said...

Will keep you all in our prayers through the next few weeks. What a warrior that little girl is. Good job mama!

Jenny said...

Praying for your family!
Jenny
www.ourplansmultiplied.blogspot.com

Anonymous said...

Been praying today. Love you. Lerah

Lerah said...

Praying lots. Love you. Lerah

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