Well, last night Kyara did not sleep again. I think she rested for a total of 40 minutes. The poor girl is exhausted. The doctors prescribed a hormone that is naturally made in the body to help her sleep and valium as a muscle relaxant. Her body is tight from muscle contractions, so hopefully this will help. We noticed that when we moved Kyara or stretched her today, she would relax. Her pulse and breathing rate would drop to more normal levels and she would close her eyes and "sleep". Unfortunately this effect would only last for 15-30 seconds, then her body would tense again and she would be wide awake. We hope that the valium will help her muscles relax so that she can sleep.
Kyara crossed her legs tonight. She was lying in bed, legs straight, and crossed her right leg over her left leg. This is a movement she has not done before, so it is exciting to me!
PM&R (the rehab Doctors) came in to see Kyara today. They are concerned with the tightness of her "heel cord". Her toes are very pointed and when she gets to the point of standing and walking, she will not have the flat of her foot to walk on. The docs are suggesting Botox injections as a possible option to help the contractions relax. I have been thinking about Botox for the worry lines all over my forehead, maybe they will have extra! Haha! Seems strange to have my 4 year old getting Botox injections, but they said it can work, so I am all for it. If/When they do the Botox, Dan the Man will put Kyara's feet and lower legs in casts. This will keep her feet flexed up towards her shins and give her the best chance at lengthening the contractures. She will have the casts for 7-10 days.
We have a new Neuro team today. The team switches every month. I like the new head Doctor. He has a gentle spirit about him. I can't explain it, I just feel like he is supposed to be working with Kyara.
We still do not have any answers about Kyara's future. I wish we did. It is in God's hands, he will show us the paths and His plan will be evident in time. Time...I am beginning to think it is a nasty 4 letter word. "Give it time." "Only time will tell." But, I know that God is holding Kyara, healing Kyara, protecting Kyara, and loving Kyara (as well as the rest of us), so I will wait. God has been good, I thank him for yesterday, today, and tomorrow.
16 comments:
Genie & Gunars,
We will pray especially for Kyara to rest easy tonight. We also will continue to pray for the entire family to hold onto Jesus. I am sure that the new neuro doc is the right one. God revealed that to you too! This is all a process that takes t..., just like all of us adults who are constantly saying, doing and thinking the wrong thing. None of us are there yet! We thank God for all He is doing and done. It has all been so miraculous already. Our neuro relative has been reading the blog and says he is amazed at her progress so far. I am not, I expect God to heal Kyara completely. So, I wait with Him.
May the presence of God surround your entire family and may His love wash away all of your worries.
We love you guys! Spokane
Hang in there girl! We're all still praying for you. -Sara and Tim O'Dell
Genie,
It almost sounds like Kyara is displaying the moro reflex, the same reflex that newborns have that "startle" them awake. It is the reason why swaddling newborns helps them with this startle reflex. Could they "swaddle" Kyara up?
Also, the area of your brain that makes the sleep cycles is called the pineal gland. It makes a hormone called melatonin that controls sleep/wake cycles as well as seasonal cycles. People sometimes have problems with their pineal gland in the wintertime due to lack of sunlight/lack of time spent outdoors and they get something called S.A.D. (seasonal affective disorder). Is there anyway she can have access to natural light or have a uv light brought in to simulate natural light and at nighttime try to keep it dark and quiet in the room? I don't know what her room looks like.
Anyways, we are thinking of you all and praying for little Kyara. Richard from T&P also sends his prayers your way. Let us know if we can do anything to help.
-Debbie and Steve Gulas
Just wanted to drop you a line to say hello. Wishing for some sleep for Kyara and you. Keep up the great work with the blog, you may have a new found profession, a writer. I bet it's tough, but you have done a great job!
Matt
You words prove that you are wiser than you know. Perhaps this new doctor is an answer to a prayer you have been seeking. The Lord works in mysterious ways. Sweet dreams Kyara,
The Vaughn's
I am glad things are looking a little brighter. One day at a time, they say. I got in touch with Paul's ex-therapist she recommended 1st choice Scottish Rite for therapy, then if you need something closer she suggested Hands on Healing in Fayetteville and said to totally avoid going to Interactive therapy in Thomas Crossroads. Hopefully this helps. Paul has been to feeding therapy in Scottish Rite before and they are very good. Lots of love and blessings we are still praying for all of you.
Love,
Ivette
Hi Genie and Family,
I am thinking and praying for you all everyday even if I don't post that to you I want you to know you are covered in prayer and good thoughts. I am amazed at your families strength and hope we all see some wonderful things with her treatments with the new team. Love you all! Laura
Hey Genie,
Not that this really will help, but just so you know that it happens to folks of all ages, my dad has had botox injections in his arm before to help with a similar problem. So, yeah...Kyara is young, but apparently botox helps with more than just wrinkles. :)
Hopefully she was able to get some true rest last night, as well as the rest of you!
Love,
Kate
I love to "hear" (read) the peace in your "voice" (typing) :) I can see that God is giving you peace that is much needed. I read a devotion today that applies to your situation it is from Exodus chapter 14. Here it is...
"It tells the story of the Israelites' escape from slavery in Egypt. Initially, Pharaoh agreed to let God's people go, but soon after they left, he changed his mind. He began to pursue them with 600 of his best chariots. The approaching army terrified the Israelites. They cried out to Moses. Moses reminded the people of God's promise that He would deliver them. But their circumstances told them otherwise. They heard the rumbling of the chariots charging toward them. They saw the huge body of water blocking their only escape.
Can you imagine their fear? The reality they knew was that Pharaoh's finest soldiers were pursuing them, and there was a huge obstacle, the Red Sea, preventing their escape. God's people had no idea the miracle awaiting them.
When Moses stretched out his hand over the sea, Scripture says, "All that night the Lord drove the sea back with a strong east wind and turned it to dry land" (Exodus 14:21). Because it was dark, the Israelites could not quite see what God was doing. In the dark of night, God tirelessly worked on behalf of His children to deliver them, just as He had promised." [Encouragement_for_Today@crosswalkmail.com]
I think you are right that this new doctor was the one sent for Kyara. I will pray that he will find new ways of helping her and especially that she gets some restful sleep! Hang in there!
The Lopers
I just wanted you to know that Creighton prays for Kyara daily. He was very excited to know that you played the tape with their voices on it for Kyara!!
Cast all you cares on Him for He cares for you! God knows your heart and Kyara's too!! HE will make it right in HIS way. The Smith's are praying for you daily.
Hi Dzenis's,
I was just thinking of Kyara and wanted to let you know I did not forget about her...I worked a double last night (Monday) so I will not be in today (Tuesday) but I will be back Friday and her bedside will be my first stop for sure! I just read all the blogs and got caught up. Again...I cant believe what she has been through. I honestly hoped to never see her as a patient again, but we are here now and I cant wait to start working with her again. In no time she will be scowling at us like only Kyara can and telling us all what to do :) See you soon!!
Sam
Kyara, you do not know me, but I knew your daddy when he was a little boy and he saved a school bus from crashing!!! Angels followed him that day and I am sending prayers that they will follow you now. you are beautiful.
Janis, I don't know if you remeber me, but I'm sending you and your family all the prayers,love, and life I can muster. I'll check the blog for updates! love, audrey davidow
Wow Genie and Gunars... that poor girl aside from the discomfort she must be feeling, she is exhausted. I hope that whatever they give her today does the trick... Hang in there... we can't get her out of our minds... We'll pray for sleep at comfort tonight....
Lots of love,
Tina, Carlos & Nico
Hi Genie, Gunars and Peggy
I love the progress! Our prayers for you continue. Kyara's and your family's needs have brought out the good in so many people. As a family you could teach all of us many things and you have. Let us know if we can help in any other way, I keep asking because it is hard to know what you need from way down here in the "warm" south. ha ha ha Looking forward to when you are back in the warm south with us.
Lots of Love
Fran & Mike
I am praying that Kyara slept today. Her little body needs to get rest so she can fight her way back to us. God has a plan - we do not know what it is. Someone once told me that God only gives you what you can handle, even though it sometimes seems WAY TOO MUCH! Hang in there and take care of yourself, Gunars, Skylar, Kassey and of course Kyara. Love to all,
Michelle, Mitchell, Matthew and Michayla
Hey Skylar,
How are you and your sister doing in Michigan? My class relly misses you and I do to we also got a new student his name is Lewis he is very nice. I hope you got the work Mrs. Thompson sent you. Love,Michayla
We love you guys and are praying for some rest for our sweet girl. My girls want to say hello to Kyara and want her to know we pray for her several times a day. With each blessing and our bedtime prayers they are always asking God for Kyara to get better and hurry back to school. We are going to be praying for rest for all of you tonight.
Love you,
Jaidyn, Jilleyn, Jensyn, Jeremy, and Josette Carlisle
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