Monday, January 11, 2021

Hard Pressed

 

Brutal.

The last five days.


Don't be fooled by the cute smile behind her faceplate helmet.

Fractured jaws HURT - especially when eating.

And with Mary's Keto diet - adjusting her diet to a soft diet with foods she WANTS to eat and doesn't have to chew has been a huge, horrible, exhausting battle.

Her Keto diet isn't an on again off again diet. We can't just stop or cheat. We have never ever cheated in almost three years on this diet. The last five days have demonstrated how fragile she is when her ratio is off or when she stops eating. The seizure storms invade. Seizure storms make it hard for her to swallow. Which send her even deeper into the storms. We have had to rescue her over and over.

Eating has been miserable.

For everyone.

We have resorted to begging and bribing and shedding quite a few tears (me). 

We have adjusted her diet, worked with the dietician, tried this, tried that and beat our heads against the wall quite a few times.

Last night and this morning the battle was a bit less. She still stormed and struggled to swallow but it wasn't the one to two hour battle it has been in the last five days.


We are praying that it's going to be easier as the days go by.

Friday we go back in and get x-rayed again. IF she is healing well and the jaw is lined up correctly, then we just stay the course. IF the jaw is not healing or not in proper alignment... then... 

Okay...

I don't want to think about it.

They chose this conservative route in hopes that the jaw would heal correctly.

They chose it because Mary's seizures make it difficult to consider immobilizing her jaw. 

I'm grateful for that choice.

We are desperate for it to be the right choice.

Please pray that the fractures in her jaw heal correctly.


Pray Little Girl can heal and get this behind her.

I've struggled for the last five days emotionally. Why? She was doing so well. She barely falls anymore. Why when she does fall it is so brutal that she fractures both sides of her jaw??  

I realize there are no answers and so I cling.

Psalm 118:5 "When hard pressed, I cried to the Lord; He brought me into a spacious place.

What hope.

Though pressed in. Overwhelmed. He gives space. 

Thank you for lifting her and us to the throne.

Don't stop.









6 comments:

  1. Praying for healing for her jaw! You guys are one of the strongest families I know! God bless!!!

    ReplyDelete
  2. Mary remains in my prayers. Every day. For life is necessary. Love.

    ReplyDelete
  3. Praying for Mary and all of you.

    Erika

    ReplyDelete
  4. Praying for quick and proper healing for Mary, praying for strength and energy for you and Rob and your family, and praying for her medical team to help her. Sending you a hug too. Barbara B

    ReplyDelete
  5. What an amazing child you have. What amazing parents she has. God gave you a beautiful gift. I pray for healing and complete recovery. And rest.

    ReplyDelete
  6. Continuing to pray over your family daily

    ReplyDelete

Loving words from kind people make our hearts glad!