I gotta wear shades!!

As a follow up to yesterday’s post, we now know today which direction we are going regarding Eliza’s health and a possible diagnosis. What I did not say yesterday about that day in China when Blake and I were questioning what was going on with Eliza medically, was that I told Blake that I thought Eliza has Marfan.

(I will sprinkle some cuteness through this wordy post…)

We think I may be right. Pediatric Specialties is questioning Marfan as well. They are also making sure that she does not have Spina Bifida, since that is the diagnosis that was on her referral paperwork. Even though we do not see outward signs of it, there are types of Spina Bifida that are “very slight”, for lack of better words.

We will be going in these directions with our next appointments by seeing a geneticist, as well as seeing the Pediatric Orthopedic Specialist, who is also the medical director of the Spina Bifida Clinic. There is also that sedated MRI that we will have, which we pray will help with a diagnosis as well.

Marfan is a connective tissue disorder. Characteristics of Marfan are extra long arms, legs, fingers and toes; hypermobility in joints (being able to bend in ways that others cannot – sometimes called double jointed); having a pronounced or a sunken sternum (chest bone); a high pallet in the mouth with very crowded teeth; and flat feet. This disorder can affect the skeletal system (bones and joints), eyes, cardiovascular system (heart), blood vessels, lungs and the skin. As with any disorder, it will affect each person differently.

Eliza has some of the characteristics of Marfan. The way she can bend scared us at first! Her fingers are very long, her sternum is pronounced, her teeth are very crowded, and her feet are flat. She also has that scar on her back. IF it is Marfan, as far as involvement with her eyes, lungs and heart – time and testing will tell.

Right now we have more questions than answers ourselves, but we have confidence in the direction we are going! We still stand amazed, diagnosis or not, at this little miracle. In all reality, she may end up with NO diagnosis….and leave us always wondering what that scar is on her back. Either way, Eliza is fearfully and wonderfully made, and we are privileged beyond belief to be her Mom and Dad!!

I think it was the day after Eliza was placed into our arms that Blake and I started to wonder what really is going on medically with Eliza. We did not think it was spina bifida, like her referral paperwork told us, but we could tell she was doing very well and that was all that mattered while we were in China.

And every day since then she has continued to amaze us!

Today in the Pediatric Specialty department we were told we have reason to be amazed! They were amazed too! And they are as puzzled as we are about what is really going on medically.

Our amazing super star is a little puzzle right now. We have been referred to another specialist, and Eliza will also be having a sedated MRI as we try to piece together this little puzzle. Until then, we are counting our blessings again…..and resting in the fact the GOD KNOWS. He knows, because Eliza is fearfully and wonderfully made. By Him!!

So thankful for the peace these truths afford us. So thankful to call this sweet little girl our daughter. When we got home early this evening after a long afternoon, and I sat on the porch watching Eliza play outside, I was brought to tears. Thank you, Lord, for trusting us with SO much.

Things have gotten a tad crazy around here. Crazy in a very blessed kind of way!! Share in our blessings over the last few days!!

Blessed with a garden overflowing…..

Blessed with a wedding to plan…..

Blessed with the start of school today…..

Our first day of school went SO well! I have a blast planning school for these guys!!

Also blessed with a little miss who takes our breath away…

Jet lag is still hanging on…just for one busy mama….but I am determined to win! We also have four boys that are pretty sick with the China cold. Blake is the worst and I wonder if he has pneumonia. It was a long weekend for my poor hubby. We are praying everyone will be better soon, and that it won’t get passed to Kayla who is the only one that has been spared of it.

Life continues in the fast lane as Blake, Eliza and I will be spending the afternoon at the hospital tomorrow as we meet with pediatric specialties for the first time with Eliza. Please pray for our sweet girl! And for wisdom for Blake and I!