Today has been rough. Kyara has been storming again. She is breathing at a extremely high rate, she's sweating, moaning, and so tight most of the time only her head and her heels are touching the bed. Speaking of her feet, good and bad. First the bad... she has pressure sores from the splints we have been using to help maintain her range of motion. One in particular is looking pretty bad. These sores go all the way to the bone and have to heal from the inside out. So we have been keeping Kyara's feet "floating" so her heels won't touch the bed, the mat in PT or her wheelchair. The good news...we put her tennis shoes on her feet for the first time the other day and it made her look like she was ready to take off. It was just so good to see shoes on her feet!
I talked with LOTS of doctors today. They are all trying hard to figure Kyara out. She is not the normal case. Pediatric Surgery team is trying to figure out the air inside the wall of her colon, and the air in the colon itself. They have no idea where it is coming from or how to stop it, so that is frustrating. PM&R is working on the brain medications and trying to stop the storming without completely "snowing" her. I asked to have a GI consult, too. They have some different ideas of where the air is coming from, so we are looking into these possibilities as well.
PM&R showed me the MRI today, and to be quite honest, I wish I hadn't seen it. I was struggling with the decision yesterday as to know the results or not, and I wish I had picked the later. It showed significant shrinkage of the brain. Severe is the word they used. Severe anoxic brain injury. This stinks. I am going to keep my eyes on Kyara, though. That is the important picture, not the MRI. And today, I believe she SAID "Hi." Not just mouthed it, but vocalized it. We were in speech and Kassey and my mom came in. We took Kassey out of the stroller and she was saying "Hi" to Kyara. Maria (I think) told Kyara to say hi to Kassey, and she made a noise that all three of us turned at looked at her and then looked at each other. Either my mom or Maria said, "I think she just said 'Hi!'" All of us heard it. Kassey is now required to come to therapy, too :)
7 comments:
OMG, Genie... regardless of what the MRI and the doctors say, you should concentrate on the little things like Kyara mouthing and saying "Hi" to her little sister... the MRI can only show you a picture of what is going on, and the doctors' interpretations are just that... I think deep inside of you and in your heart you know for a fact that Kyara has progressed immensely... do not lose hope because of this latest MRI results, they do not tell the whole story... you know that, and so does God, who is keeping a close eye on your little girl... Keep the faith, Genie, and carry on. We continue to pray for Kyara's recovery, well-being and comfort...
Genie,
The MRI shows shrinkage, but Kyara says, "Hi" to her baby sister. The doctors can't figure out how to ease her discomfort or where "air" is comin' from. This tells me that God is definitely in charge. He sees everything, knows everything and is not perplexed or worried about anything. The closer we get to Him, the more we see and worry leaves us. This is in God's hands and Kyara is secure in Him. Kassey is so precious, no one could resist her sweet smiley face! Kyara couldn't resist her either! We pray for peace and comfort to each of you. For the doctors, knowledge and discernment as to help relax and comfort Kyara. Sleep well tonight, we will continue our prayers. Love, Spokane
Genie,
Thanks for giving us specifics to pray for---her sweet feet are the topic of today along with no storming and peace for all of you. Certainly she said "hi". No matter what doctors and tests show, you are her mom and if you heard "hi", she said it! Moms know! In our prayers constantly. Hug Peggy. Love, wink
God is working every day to increase those pathways and He is using Kassey too! How cool that Kyara said "Hi" to her! We will be praying for feet, air, storming and you!
Lopers
Praying for you, Kyara and the rest of your family everday. Keep believing!
"Trust in the Lord with all your heart, And lean NOT on YOUR OWN UNDERSTANDING; In all your ways acknowledge HIM, And HE shall direct your paths" - Proverbs 3:5-6
Hang in there girl... we're all praying for you. As mentioned earlier, thank you for giving us specific areas to pray today. We're cheering for her in Alabama!
-Sara O'Dell
Keep your chin up girlfriend! You know your little girl and she is a fighter. Her case is unique and she has a wonderful set of parents and grandparents to make sure she gets the best of care! We are praying for her miracle!
Post a Comment