urgent prayer & update
I refuse to let Tuberous Sclerosis determine the path of my life. I refuse to let sickness and this very broken world steal my joy. Just wanted to make that clear.
On that note- I am a bit discouraged today.
Em's fluid build up has continued to worsen and after sending another round of pictures to our doctor (I forgot to mention in the last post that we have been in close contact with our doctor- including a trip to the ER saturday, pictures on monday, ect) He has decided it is time to do something.
So tomorrow we (my mom, Emmaus & I) will leave for St. Louis at 4:30am to go back to STL childrens hospital. Emmaus will have a CT and then her drain put back in- so we will be admitted.
Here is the deal-
1. If the CT shows her ventricles (head ventricles not heart) are enlarged she will get the drain & will possibly need a shunt
2. If the CT shows her ventricles are fine she will just need a drain for a bit.
Emmaus has made HUGE strides since surgery- she is a little chatter box, she is moving all over the place & checking out EVERYTHING.
she is bright eyed, she wants to play with & hold her friends hands,
she is seizure free!!!!, she loves the "dodogs" and wants to cuddle them
and she's not content. I know not-content seems like a funny thing to be happy about- but she is mad she can't crawl, she gets bored easily & wants to play- she has never been like this before- it shows growth and development.
We are discouraged by this fluid leakage & that it threatens her huge strides.
Please pray that her head would get into gear and start absorbing the CSF NOW. That tomorrow when we get up to go her head would be NOTICEABLY smaller. That her ventricles would not be enlarged. We believe God can and will break into this obstacle.
We are having people gather tonight at 7pm to pray for intervention! For break through- Please consider praying at home. And please lift us up tomorrow as Dan and I are handing this with him at work and me in St. Louis. Pray that Emmaus wouldn't even need a drain, and that if she does she would handle it well. Another random request- pray we get a private room. Its no fun having to share a room.
Thank you all for walking this journey with us.
On that note- I am a bit discouraged today.
Em's fluid build up has continued to worsen and after sending another round of pictures to our doctor (I forgot to mention in the last post that we have been in close contact with our doctor- including a trip to the ER saturday, pictures on monday, ect) He has decided it is time to do something.
Top is Monday Bottom pic is Today
Here is the deal-
1. If the CT shows her ventricles (head ventricles not heart) are enlarged she will get the drain & will possibly need a shunt
2. If the CT shows her ventricles are fine she will just need a drain for a bit.
Emmaus has made HUGE strides since surgery- she is a little chatter box, she is moving all over the place & checking out EVERYTHING.
she is bright eyed, she wants to play with & hold her friends hands,
she is seizure free!!!!, she loves the "dodogs" and wants to cuddle them
and she's not content. I know not-content seems like a funny thing to be happy about- but she is mad she can't crawl, she gets bored easily & wants to play- she has never been like this before- it shows growth and development.
We are discouraged by this fluid leakage & that it threatens her huge strides.
Please pray that her head would get into gear and start absorbing the CSF NOW. That tomorrow when we get up to go her head would be NOTICEABLY smaller. That her ventricles would not be enlarged. We believe God can and will break into this obstacle.
We are having people gather tonight at 7pm to pray for intervention! For break through- Please consider praying at home. And please lift us up tomorrow as Dan and I are handing this with him at work and me in St. Louis. Pray that Emmaus wouldn't even need a drain, and that if she does she would handle it well. Another random request- pray we get a private room. Its no fun having to share a room.
Thank you all for walking this journey with us.
PRAYING!
ReplyDeletejust saw this. sad I missed the prayer time. I'm praying now. Love you!
ReplyDeleteHi!
ReplyDeleteSo...I've never actually met you, but am good friends with Hannah B.
I remember Hannah telling me about you because Emmaus is around the same age as my son.
Anyway, Hannah posted this link on Facebook tonight so I clicked on it right away.
First of all, that is SO wonderful to hear that she's making such great strides.
What an awesome thing to witness, I'm sure!
I also wanted to let you know that I will be lifting your daughter up in prayer tonight and tomorrow as you head to St. Louis.
also just read this and am praying!
ReplyDeletePraying and passing it on to my huddle if they don't already know....
ReplyDeleteJust found this. We are praying heavily for you guys. My husband and I love you, even though I haven't seen you since HS (and he's never met you). Praying that God will help you through this and that your little kidlet will continue to grow and develop.
ReplyDeleteAs always, if you ever need anything, please message us... we live close by.
Hugs,
Savannah
I am sending up prayers for your Sweet Baby Girl. God's love is surrounding her..... and will keep her safe during this journey she's on..... Just like he has blessed her Mummy...with the most amazing strength I have ever seen in such a young woman. Keeping you all in prayer.
ReplyDeletePraying for you and your fam, sweet friend. Praying the Lord will quiet you with his love and surround you in this place!
ReplyDeletepraying!
ReplyDelete