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Julianna's medical update

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  • nena1294@aol.com
    Message 1 of 1 , Mar 5, 2012
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      Hello everyone,

      May this email find you blessed and well.  It has been a while since I have updated Julianna's web page.

      I think sometimes it helps to pretend everything is moving along.

      You do not want to come across as dwelling to long in one place. 

      The boys keep us hopping and are getting bigger. The require a lot of attention.

      Julianna was placed on another seizure medication in January, not in place of the two she already takes, but along with. She had some complications and we had to slow down the dosaging. This past month she has been placed back up to the intial dose.

      Her EEG's continue to be "very bad" to quote the nuerologist.

      Today we went back for a review.  Julianna has lost a lot of her usage of her right arm, her right eye is droopy and her right hand has this on/off again twitiching. There are times when it looks like she is having spasm in it or her whole body.

      We have to take her for another overnight EEG, for how long will we stay will depend on; if we capture all of the "seizure like" activity she has. Julianna is no different than any other child when it comes to the doctor, when she needs to show them, she clams up.

      Saying Da da is a thing of the past, yes she hums mama often, and I love it, but have to contain my gratitude, so not to be selfish of Dave's feelings.

      Please do not misunderstand, Dave is grateful that she says mama, but I know that wonderful daddy would just break down if one more da da escaped her lips.

      She is just so sweet, looking at her she just has taken this all in stride. The medications, doctor visits, twist and pokes. I would have screamed from the roof tops ENOUGH.  Yet my warrior for Christ just takes it all in stride.

      She has to be scheduled for a nerve conduction test and emg with sedation. I have to schedule an appointment for Dave and I to attend a class on Ketogentic diet for her.

      Doctor does not feel she has any other medications to offer us that she will not have an adverse reaction to, or become less aware of everything, including us.

      Her sleep pattern is all over the place. Her awareness drifts in and out all day. When she is on, baby look out she is dancing in the aisles. Days when she is down, suctioning is up, nebulizer treatments going, I tire of cleaning and getting the house ready for my absence.  Get the laundry done, food in the fridge, pick up the clothes, finish up projects, assign my respondsibility to someone else at church, fill up the car, clean up the rooms, change the sheets in case someone has to come and stay.  I Clean up the toys and pick up the shoe's just in case the other one drops. Dave leaves the house and tries to clear his head, off to work, to a busy day, thoughts of Julie and I are not far away. He answers the questions, picks up the phone... all the while Dave is thinking of home. He prays on the train back and forth, that when he recieves that call, he... he will be close.

      I have a bag packed for those just run days. I call DJ's school calmly and tell them to let him know, I will not be home. He knows what that means and he knows where to go.

      Teacher's have to be made aware of all that the children face, but are not to let them use it as an excuse. They are to follow their own paths, fulfill all the Lord has layed out for them. Their sister is to remind them how awesome they are, that Jesus saw them as the team for His little star. She is not to out shine their future's but add perspective, on what "can't" looks like and what it really means. That normal is an over rated word. Love is used to quickly and not in the correct context it was made to be used.

      Dave and I continue day to day fufilling our respondsilbilties and accepting new ones. We step out in full confidence in Christ and what He has done at the cross for all of us. Accepting Him sometimes means to be rejected by people around us that do not understand our walk with Him or His ways.

      Beautiful things come out of these stiuations sometimes. We are closer, have learned what forgiveness means, giving and recieving it.

      Repentance and turning away from some things, just to be able to turn to the Lord and serve Him fully.

      Acceptance is not surrending, but a stillness to fight another day.

      Isaiah 55:12 - "You will go out in joy and be led forth in peace; the mountains and hills will burst into song before you, and all the trees of the field will clap their hands."

      knowning that you are not in control, but someone wiser is.


      Wonderfully made....

      You are wonderfully made, knitted just for me. A place just for you, no one else could be.  We shared our first dance, I thought of you all the while, waiting for that first glance.

      All wonderfully made, just one, just for you. Just a child made for two.

      If by chance their was a copy, another masterpiece. A wonderfully made two, yet still so unique.

      Your path not yet known, but a place yet to be. Wonderfully made you, made for just me.

      I see your face, that makes me smile. I wonder what I did to deserve such a child; with anticipation and some reservations, I watch you grow and know one day we'll part.  Yet my heart you will never leave, forever close, so special, so dear.

      Baseball, Ballet or Soccer? Will you earn a goal or win an Oscar?

      Wonderfully you, made just for me

      What did I do to have gained such a gift? How could you ever repay a debt like this?

      A heart filled with Joy to know, one day your thorn will be gone and off to glory you'll go. It will be ripped from your side, you will be set free. You will dance and fly, sing and rejoice in He. His face will shine upon all you have endured. You have not grumbled, you have not cursed. He replaces your thorn with Love, peace and quenches your thirst.

      Wonderfully made you, just for me.

      A reminder of how I was made, and meant to be, and all that was set into motion that day. Has been worth it all I have endured through the years. A day to see you, in all you are and in His Grace.

      Wonderfully made, like all of the stars that brighten up the dark space. Our love for one another pours out like rain. Spilling over the boundries of things man has made.

      Wonderfully made you, just made for me.

      I thank the heaevns to be in such company. Filled with acceptance, confidence and Joy.

      I love you wonderfully made you, all girls and all boys.


      Millie Rodriguez


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