Profile cover photo
Profile photo
julesann m
julesann's posts

Post has attachment
Round 2 of casting
Four weeks ago, Amelia had both legs
casted to try and straighten her knees.  Amelia did so good through almost the whole procedure that I knew
our prayers were being answered and I was very thankful for that!  The
first tears came after they were on; ev...

Post has attachment
The next step
Today is a day I have been dreading for a while.  This afternoon, Amelia will start casting on both of her legs.  Not necessarily related to her Loeys Dietz Syndrome, Amelia was born with multiple contractures, at which time they diagnosed her with Arthrogr...

Post has attachment
Take Heart!
Pre-meltdown Earlier this month, we saw Amelia's cardiologist and I'm very happy to report that it was a great visit!  She was all smiles when we got there, but when it was time for the EKG, she slowly realized what was going on and when she did, she wanted...

Post has attachment
Determined to walk no matter how long it takes!
So often lately, I sit down to write an update and the words just aren't there.  I type then delete, type and delete, and so on.  And then I happened to go to a garage sale and someone recognized Amelia and told me they have been praying for her!  I can't t...

Post has attachment
Getting back to the heart!
It's that time again...  On Wednesday, Amelia will be seeing her cardiologist and also having an echocardiogram to be sure her aorta has not grown.  Please pray that we will not see any growth, that Amelia will tolerate the test well and that God will give ...

Post has attachment
Our little go-getter!
9 months! First of all, thank you to all our awesome prayer warriors on behalf of our Amazing Amelia!  We truly believe He hears each and every one of your prayers!  A few weeks ago, Amelia had an MRI/MRA to get a closer look at her aorta dilation and the r...

Post has attachment
Loeys Dietz Syndrome
An official word in our vocabulary now and used quite a bit these days...Loeys Dietz Syndrome.  About a week ago, we met with Amelia's genetics doctor and counselor to go over the results of the genetic testing and they confirmed Loeys Dietz Syndrome (LDS)....

Post has attachment
More good news!
Feeling pretty exhausted tonight, but couldn't go to bed without sharing the good reports we received today.  Amelia's aortic root is still dilated and has not decreased in size, but it is not growing either and considering Amelia has almost doubled in size...

Post has attachment
Psalm 118:24
  "This is the day the Lord has made; let us rejoice and be glad in it!"  Psalm 118:24   We have so much to be thankful for!  God has certainly blessed us with an energetic, joy-filled baby girl!  2 months ago, I was just hoping I would have her and God has...

Post has attachment
4 months and counting!
The last few days as I hold Amelia, I wonder where the time has gone!  Although, the first few months of her little life were pretty full of appointments.  This month will be a lighter one with only the weekly therapy and one appointment to check her braces...
Wait while more posts are being loaded