Today has been busy. Kyara had therapy at bedside because of her operation on Saturday. She has alot of tubes again, and it would be difficult to take her downstairs. She is still pretty heavily medicated for pain, so she is having trouble focusing her eyes. Good news, her heart rate is way down, even when she is stiffening, and her breathing rate has also decreased significantly.
Tonight she has been making faces like she is crying. She seems to have waves of pain or discomfort, but then it resides. I am not sure what to make of it. She has also had two poops (one last night, one this morning) so that is encouraging that her surgery was successful. I am not really comfortable with the results, though. Her stomach is still distended, she was pooping liquid before and that is what she is pooping now, and it seems to me like they relieved her symptoms, but what about the cause? Noone can give me an explanation that I am happy with. This is concerning to me. I am still pushing. The doctors said her x-ray this morning looked better than Saturday...well I should hope so! When is the distention going to go down, though?
Kyara is not the only one crying today. I met another mother of a child who had an anoxic brain injury 6 years ago. I had asked to meet someone so that I could talk with someone who has been in my shoes. I wanted a success story. Unfortunately, what they consider success is not up to my standards. The boy is 9 but is only at a 4 year old level. This is after 6 YEARS of rehab. I know each patient is different, so I hope for a better outcome for Kyara. It was disappointing to hear his outcome, though. Then, tonight I got a brilliant idea to video tape Kassey walking. This would have been great had I just done what I had originally planned, but oh no. I had to rewind the tape and watch Kyara from this fall. God, I miss her!!! So now I have been bawling for the past hour. I WANT KYARA BACK!!
Kyara Dzenis
18 comments:
please just know that you all are loved, being prayed for, and lifted up. I can not imagine being where you are and being as strong as you have been. Just remember God holds all the little children in his hands! He has great plans for all of you! Knwo that you are loved...Lana, Russell, Caitlin, Savannah and Alexander
I know how much you (and everyone) misses Kyara...please know we are all here for you and praying for you. You are doing all the right things for her...and hopefully, in time, she will recover from all of this!!! Call me if you need anything!!!!
Genie, Sweetheart she is in there God is just letting her rest right now. She still loves you and knows you are Mommy. Lean on him
Praying with out ceasing in GA
Genie,
I heard this song in church yesterday, "Oh No, You Never Let Go". I just added it as the first song on my blog. It is so powerful, and I cried out in prayer to the Lord for Kyara and for you as I sang it. The words are so powerful. As you walk through this valley, remember "God's perfect love will cast out fear." God never lets go. He is catching your tears right now. God is with you. I will listen to this song daily, and pray for Kyara, you, one of the strongest mothers I know, and your sweet family. "There will be an end to these troubles."
Listen to the song when you have a moment.
God is holding you.
Adrienne Maples
WRES teacher
Oh Genie you need a huge hug! Wow I can't even grasp the emotional upheaval you have all been through in the last couple months. You deserve a good cry and that may be the best thing for you. We are here if there is ANYTHING we can do. Love you all!
I am so sorry to hear how you have been feelings. I know when I was pregnant with Paul they asked me if I wanted to go to CICU and see other babies born with his problem or talk to other parents and I always said no because I didn't want anyone to dicourage me. Every child is different and God has his plan with each one, I didn't want anyone making me feel bad about mine. Just keep in mind that God only know how Kyara is going to do, no other child is her so please don't let that bring you down. Keep you head up and faith in God, he will make you strong to go through whatever you need to preforably more good than bad. Our prayers are with you. I wish we could have met to talk before all this happened to get to know each other better even though I feel part of the family going through all this, at least my prayers and heart is with all of you. God bless you all.
Love,
Ivette
Genie,
We feel your frustration and we share your tears. We all want our Kyara back. She is such a joyous person to be around. She is in there, and God is working on and with her. We just want you to know we share your frustration and grief for where we are in this journey at this moment. We also share the truth that we know you already know. That is that Kyara is one strong kid and that God is stronger. Together they are going to amaze us all!
Please feel the hugs we are sending you, and know that we continously lift all of you up in prayer.
We love you,
Laurie and Josette
I really have no words that can possibly comfort you, but I can keep praying.
I echo others...just know that you are all loved and lifted up in prayer.
Love,
Kate
Genie,
Bless all of you! I had abdomonal (sp) surgery a few years ago and it takes a while for the tummy area to go down--in my case several months. Hang in there, sweetheart. You are an amazing mom! I know you miss the old Kyara, but try to focus on the wonderful, precious one you have now and what strength God is giving all of you. We love you,Wink
Genie, I do not know why BAD things happen to good people. I do know when you feel you can't trust the hand of God, Trust HIS HEART. HE is with you and your family every day,every moment.He takes your tears and places them in a special bowl in heaven.Your tears are that special to Him.
We do love you so much,
Aunt Ginger and Jimmy
Genie,
You all are in our hearts and prayers. Please remember the emergency surgery Kyara had on Saturday was a major surgical procedure and she needs time to rest and heal. Please don't get down about her level of progress based on how she is responding now. Kyara is very blessed to have you for her mom. Much love to all of you,
the Groves
My nephew had a brain injury a few years ago. His recovery was helped because the mother/father sang to him as much as possible. They also had CD's playing in his room as much as possible. They sang pre-K songs, Christmas carols, church songs, basically any song that they thought he might remember. Their speech therapist said that the brain stores music in a different area than regular spoken language. My nephew could sing "Happy Birthday" long before he could "talk" after the injury. I wanted to share this with you in case your speech therapist hadn't mentioned the importance of songs. His recovery was slow/frustrating/maddening, but it was also amazing. It took lots of time, patience, and determination. I continue to pray that Kyara will have the same level of recovery.
I don't have magic words to make you feel better but I am praying for you guys non-stop. We must hold on to our faith in God and just know that he has a plan for your sweet daughter and family. Please know that I'm sending hugs, love and prayer your way today. I hope Sweet Kyara has a restful day. Please let me know if I can do anything to help out.
Love, Misty Evans
Hi Genie -
I'm sending a long distance and internet hug your way; and of course prayers and positive thoughts continue for you, Kyara, and everyone else in your beautiful family.
love,
megan
WHEN YOUR HUT'S ON FIRE!!!!
The only survivor of a shipwreck was washed up on a small, uninhabited island. He prayed feverishly for God to rescue him. Every day he scanned the horizon for help, but none seemed forthcoming. Exhausted, he eventually managed to build a little hut out of driftwood to protect him from the elements, and to store his few possessions. One day, after scavenging for food, he arrived home to find his little hut in flames, with smoke rolling up to the sky. He felt the worst had happened, and everything was lost. He was stunned with disbelief, grief, and anger. He cried out, "God! How could you do this to me?" Early the next day, he was awakened by the sound of a ship approaching the island! It had come to rescue him! "How did you know I was here?" asked the weary man of his rescuers. "We saw your smoke signal," they replied.
The Moral of This Story:
It's easy to get discouraged when things are going bad, but we shouldn't lose heart, because God is at work in our lives, even in the midst of our pain and suffering. Remember that the next time your little hut seems to be burning to the ground. It just may be a smoke signal that summons the Grace of God.
Crying is healthy....Maintain and feel the grace of GOD in your heart. He works mysterious ways. Faith will rescue you,
The Vaughn's
"Be still and know that I am God". Praying for the peace for you all to be able to be still in peace for a few moments.
I am crying with you Genie (even though we have never met). Please keep hope alive. My heart goes out to you... My prayers are still with you. Much love!
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