Sleep Sweet Baby...
Thursday, March 3, 2011 at 08:02AM I haven't blogged in a few days because it's so hard to write the same things -- no sleep for Luke. Throughout the weekend and beginning of the week, the Drs have worked to give Luke the right combo of meds for sleep. Lots of people want to know WHY ISN'T HE SLEEPING?
Here are my thoughts:
- Luke has a brain infection therefore, his entire central system of all function isn't working properly
- Luke's right side has uncontrolled movement 24/7 (non stop)
- Luke's left side doesn't move at all
- When given meds to stimulate movement for the left side, the side right goes into overdrive
- When given meds to slow down the right side, the left side is really unmoveable
- So, as Luke stated earlier, "I am a conundrum!" It's truly as if his body is divided in half (one side doing one while the other does something else)
- Why can't they just "knock him out?" Well, he needs to be functional the next day, so we can monitor his clinical behavior and get him better
- Luke wakes up most night in pain because his tone is so very tight on his left side
- Luke also wakes up because his right leg locks into place and he can't move it
Luke is on lots of heavy duty meds for all of the above symptoms. The trick is to get the right combination.
GOOD NEWS - Luke slept last night! I am so thankful, however, I am also hoping he continues to sleep (and isn't just so exhausted from NO sleep in 4 days) because we are leaving soon for our Mayo Trip and we want him sleeping before we leave.
Prayer Requests:
- Sleep for Luke
- Mayo travel (Rochester, MN)
- Drs at Mayo
- Abram - he will go with us on this adventure along with our friend, Lea
- Answers
- Complete Healing
Our local news ran Luke's story; if you would like to see a video clip of it, please go to this link. First Coast News, Channel 12, Jacksonville, FL
http://www.firstcoastnews.com/news/article/194008/3/6-Year-Olds-Condition-Described-as-Unusual-Case
Reader Comments (19)
Sending prayers for your family. For your brave Luke to get the rest and healing that his little body needs. For you and your husband to continue to be strong for your children that need you so much. Keep believing in the Lord for he can and will heal all of you.
Praying right along with you...loved the news article. I love how that sweet boy smiled the whole time...only Luke could do that. Now the world can really SEE just how special he is.
"You're close enough to hold Luke in Your arms..the Maker of each moment...Father of our hope...one timid faithfilled knock resounds upon the Rock...one trembling heart and soul pleads for Your mercy...in our boldness we call to Thee to protect Luke and his family on this journey..we trust You will call across the mountains and the seas and answer by making miracles in we....OH, Adonai, send Luke Your great peace and healing...Amen
You are all in our prayers. I saw that clip on Luke - what a brave boy and you can see his "true" person when looking into his eyes.
Kram from the Bärgman-Margitin family in Sweden
To the beautiful Akerstrom family - You don't know me but I have been following your story for over a month now. I'm friends with Wendi who shares your story consistently through Facebook. I wanted to let you know that today, I forwarded your blog information to my entire family. They are all devout Christians that live in different areas. Luke and your entire family are being put on their church's prayer lists as we speak. You have a lot of prayer warriors out there and I just wanted you to know. I also have family that are missionaries in Madagascar so prayers for Luke are International! We love you and we're praying SO very hard.
We are continuing to pray for healing, answers, wisdom, and trust. I can't imagine the pain you all are experiencing through this challenging time but to see the faith you have is amazing and inspiring! We serve a God who knows our hurts, our fears, and our pain. He knows just what little Luke needs and I will continue to pray that God opens doors for you and your family.
love,
The Raftery's
Like so many of the people who have commented you don't know me but I have been following Luke's story for about 1.5 months, originally learning about him through Facebook. I check your website everyday for updates, and Luke and your family (and everyone involved) have been in my prayers and continue to be. I have shared this blog with my family and friends and they are all praying as well. I pray that you will get the answers you are so desperately in need of at the Mayo Clinic. Sending so much love your way!!
Hello Brandi and Magus,
I have met you a few times through mutual friends and just thought you are the sweetest and most kind little family. I have seen Lukes's story through friend's posts on facebook, and have become familiar with his journey. I just want to tell you that my heart, love, prayers and thoughts go out to you and that sweet, beautiful little boy daily. I have a 6 year old as well and I can only imagine what you are going through. Please know you will be in my prayers.
Brandi,
My husband Mark and I went to high school with you and although we didn't know you well we remember always seeing a smile on your face. Luke must take after his mom. I just wanted you to know that our family is praying for all of you. My 7 and 5 year old girls ask every night to pray for Luke and we have ordered our bracelets. My oldest wants to wear hers to school so the other children will pray for him as well.
God seems to be using little Luke and your entire family in mighty ways. You are constantly in our prayers.
Love
Mark and Deidre Anderson
I actually live right around the corner from you and we have not met.. Just wanted you to know our entire family is praying for you and your family. Our kids are praying for sleep for Luke and strength for everyone else ;0) I know we are just one of many but we are one in heart. Sending <3 and prayers.
Brandi, we pray for Luke and for you every day. I wait for that day when Luke will be back to the violin group lesson. It will be the happiest day of zuzuki strings. I trust in God, he will be with you at all times.
praying for little Luke - oh, Lord that you give him sweet rest tonight! May God's healing hand be upon this baby boy and begin a mighty work in his body.
My prayers for Luke and your family continue and also as your journey takes you to Minnesota...I have been praying for the Drs. there who will evalute Luke and that God will give them the knowledge and expertise they need to find the answers for Luke's illness. My fervent prayer is that they will know how to treat him and that he will respond to the treatment in a miraculous way. I will continue to pray for the specific needs you mentioned above and also that your family stays strong during this difficult time. Please know that many people love Luke, Abram, you and Magnus and that many prayers all over the world are being lifted up for Luke's complete healing.
I saw the clip that was done on Luke and he is just so precious and his smile says it all. God has a plan for his life and it is so unfortunate that he is having to suffer so much. God uses little children to change adults and Luke has become a missionary for our Lord. Sending love and hugs to all of your family and especially precious little Luke.
Hi dear friends,
Like many others I do not know you but just today stumbeled across your story and consrtant updates about Luke. I cried some and smiled some as I read your blog beginning to end and learned more about Luke, your family, and the never ending journey you seem to have found youtself on. You have my prayers and I look forward to seeing Luke progress to the days that he can play the violin, run around with his brother, and wrap his arms around your neck. Gods got this. Having gone through and overcome some pretty scary illnesses that left me in the hospital and with a new heart from a transplant, I know full well that God does heal, just maybe not as fast as we hope. Marathons are exhausting... Especially when you didnt get much training :) But remember you have the greatest coach getting you through it and its the end of the marathon thats most rewarding. Will be thinking and praying often... And sending along so others may do the same. Stay strong! Your blog has been an awesome testimony and encouragement to all those who read it. Most of all... Remember God's got this.
Dear Luke and family. Seeing Luke's story on FCN brought me to tears. I can't even imagine what you're going through and as a mother of two boys as well, my heart aches for you, but I send strength and prayers your way. I'm a long-term employee at Mayo Clinic here in Jacksonville and my faith is ever so strong in Mayo. We have the best physicians, nurses and staff in the world at all of our Mayo locations. I'll send prayers your way for your travels to Rochester this weekend. Just know Luke will be in very good hands and I pray and hope for a successful trip and outcome of healing. He's a sweet little boy and God is watching over him and will give him (and all of you) the strength to get through this.
Praying for you guys.
I am in such awe, after reading the entire blog of Luke's journey. Luke and your entire family, as well as everyone how has and will come in contact with you all are very much in my prayers! It is all so heartbreaking, but he's such a strong boy and your faith is amazing and beautiful.
I pray that Luke has some relief and that the Drs in MN are able to shed some light on things for you all. As the mother of an almost 4 yo, I cannot imagine the strength you all have to keep going and stay positive. Prayers for Abram as well, what a sweet boy the "take care" of his big brother.
I wish there was anything I could do for your wonderful family.
Continuing prayers for you all!
I too just came across this story today via Facebook. After reading all of your posts, I along with many others are hurting with you for your precious son. I am praying and will be praying until the day Luke comes home. I'm also thanking God in advance for the healings that are to come." Dear Jesus, I ask that you be with Luke, comfort him and give him the rest that he needs. I ask that you be with his family, comfort and strengthen them during this hard time. I pray that you work thru the doctors to get Luke better. Lord give them the knowledge to know exactly what needs to be done so Luke can go home with his family. I thank you in advance for all of the blessings that are coming to this precious little boy and his family. In Jesus sweet name, AMEN"
God bless you and your family.
My prayers are with you as you make this journey. I read your prayer list and I will ask for each. Much love in Jesus sent to you.