Thursday, February 02, 2006

A Day in the Life of Luke

I just want to begin by telling you that Luke is doing a lot better, he seems to have finally gotten over the cold that he had last week. On Monday at Physical Therapy his PT was standing him between her legs and he looked wonderful, he is getting great control of his head and his feet looked great. He is starting to sit up for longer periods of time, each day I begin his bath by putting his feet in the water so that he can feel the temperature, then I sit him down and let him sit there as long as he can, it seems to be getting longer each day. I also noticed today that when he was sitting on the couch he would put his head down, but as I would tell him to pick it up he would when he wanted to. One last thing to report about is his eyes, I begin to notice last week that as you would put something real close in front of his eyes they would cross, this has not happen before and I have seen this a few more times since then. Luke must really be feeling energized since I have been using the Biomodulator on him daily, I'm looking forward to getting some new wires for his machine so that I can start using some pads on him so that I won't have to hold it the entire time.

I know I mentioned awhile ago that our Insurance Company has decided to review whether we should be getting more nursing hours. So we thought that January 24th would be our nurse, Mary's last day, but while we were in Hawaii, she had some health issues and she has not been back. To say that I hit the ground flying would be an understatement. Although our nursing agency did call to say that we have been approved to continue with nursing through February, we are now waiting to see if Mary will be able to return, though most importantly we are praying that God will direct her and show her whether she should go back to work at all.

I previously mentioned in my last blog that I would really have to be extremely organized to fit everything into a day that I need to get done and I have found this to be very true. Mornings are the most hectic time as there is so much to do with Luke at the beginning of the day. My day usually begins with some kind of alarm going off, either Luke's food machine or his oximeter or Lily crying wanting to get up for the day. I've been trying hard to get in the shower right away or if that doesn't happen it won't for a long time. Well once I get Lily up and wake up the girls it's time to feed everyone breakfast, all the while making sure that Luke doesn't feel left out. I have to get him his morning med's and supplements before unhooking his feeding pump for the day. Then I usually give him and Lily a bath, get the boys moving to get dressed and have them pick up their room, by this time it is time for the girls to go to math with Auntie Cindy next door. I then continue with Luke's massage and put on his orthodics on his wrists and ankles, I don't like putting these on without massaging him first since they really impede his movements. After I'm done with that it's time to start his first feeding of the day and lay Lily down for her first nap. Enough information, I'm sure by now I've lost quite a few of you, I just wanted to give you a small glimpse of a day in the life of Luke.

I really love to read and have read some wonderful books recently. I didn't have much time for reading this past year so this has really meant a lot to me. One book that I think you would all enjoy is called 90 Minutes in Heaven written by Don Piper. This was an extremely moving book and I just happened to pick it up a few days before we went to HI thinking I would read it on the trip, but I happened to get my hair done and while I was sitting there I began to read it and as I sat there tears would come to my eyes as I would think about Luke going to Heaven and what he experienced while he was there during that time when we knew he was gone. The young lady doing my hair asked a few times if I needed a tissue I said no, and began to share with her briefly about Luke and why this story touched my heart so deeply. Come to find out she is the daughter of the man who runs the HBOT machine for Luke and they were talking that night and she mentioned Luke's story and he told her that he knew Luke, small world, Huh!I would really recommend you reading this book it is a comfort to those that have lost a loved one and to those that want to know more about heaven. It basically tells a story about this man who died and went to heaven, he was gone for 90 minutes and someone prayed for him and he came back to life, his life has been filled with many miracles and he is truly used of God as he shares hope with those that are in pain and need to be reminded that God is there for them. You can get a copy at or Christian Books Distributors (, if you are interested.

We continue to need wisdom in whether we should begin to apply for SSD, Social Security for Disabled Persons or the DDD, Developmentally Disabled Department. We received the paper work this week and to say it is overwhelming is putting it mildly. To be absolutely honest with you all I haven't applied for any of these programs because I'm not sure how long we will need them, I'm also not sure how much we would use their programs for Luke right now and last but not least it is extremely hard for me to say that my son is disabled. This is not a slam to those that are or those that have loved ones that are disabled, it's just hard for me to think of Luke as that way, though I now right now he is. I guess all I'm asking is that you would be praying for God direction in whether I should put forth the effort to get this paperwork done. My last prayer request is for Luke, he has a big appointment with his Gastronologist and Plumonologist on February 13th and it is my biggest desire that he will be healthy and breathing great on this day as I want them to see him at his best. I know I shouldn't really care what they think, but my heart does and I want them to see the improvements that we have seen in him. I'm only asking for a little encouragement.

Well I realize that this is entirely too long and if you are still reading this you are truly a big blessing to us. I do pray for those of you that post prayer requests in the comments, Joanna has really been on my heart this week, please feel free to share them as I know that I'm not the only one that reads them and prays.

Love In Christ,
Luke's Mommy Sue


Lisa said...

SSD and programs like that are for people like you. You will get extra money to help with things, which I know right now would be a blessing to you. I also think that these programs have other programs attached to them. You might get all kinds of help for medical equipment and things like that. There is a man here in work who has a son who is very disabled, and through these programs he was able to get help pay his $1100 van payment for his son. His son is wheelchair bound and they needed this van. Even if you only need the program for a short time, I'm sure it would help you. On a side note, I just wanted to let you know that I read this blog all the time. Whenever I doubt there is a God, I read and I see the progress Luke is making and then I KNOW there IS a God. I pray for Luke often and I can't wait to read the entry that he is healed. Take care.

Rebecca said...

Hi, I saw your blog about Luke. He is a darling. My son Scotty was disabled as well. You are definately doing everything you can to help Luke reach his full potential. Scotty had cerebal palsy, seizures, etc. He passed away this last September at age 21.
My blog is "Only through My Eyes" here at blogspot.
Scotty's Physical therapy at an early age was the biggest benifit for him as he got older. Constant reinforcement and a routine are the best things you can do for him.

Carmichael Family said...

Thank you for sharing about a day in Luke's life, I really enjoyed reading it and getting a glimpse of what some of his everyday care and activites involve. We are still keeping your family in our prayers.
God bless,

Jenni said...

Haven't commented in awhile but I wanted to say that I'm so glad that you guys were able to get away to HI, you really needed it! It's good to hear about your day with Luke.

Here's just my little two cents about applying for help. We are on DSHS right now, we had a hard time applying for it because we have seen so many people abuse the system, but we just decided that it is only for a season and until we don't need it anymore. It is there for people who need it, and you may only need it for a season but for us it has been a huge blessing while we needed it. Sometimes God sends us financial blessings in ways which humble us. God bless you in your decision making. And know that though they may label him disabled it doesn't mean he will always need it or even be labeled that. Look at all those in the Bible who were one thing and then Jesus touched them and they were clean and healed! We will all still believe for a miracle with you and your family!


lockwoods said...

Glad to read your new post! I will pray for wisdom for you. I say get all the help you can - when you don't need it anymore, then you can always stop it. Sometimes we just plain need help, you know? I'm also praying that you get a glowing report at Luke's big appointment. But no matter what the report is...remember that truth is reality as perceived by God. The truth is that you have been seeing improvements, you have been seeing God work in your son's life from the moment God returned Luke to you!

Thank you for praying for Joanna (our 6yo daughter). She had a biopsy on Friday and the Dr. expects it to come back positive for basal cell carcinoma(skin cancer). That isn't the worst, though. If it is positive, it will mean that she has a disease called Gorlin's syndrome. It's a genetic disease, and a pretty big deal. I am very anxious, and having a pretty wide range of emotions right now. I would truly be grateful if you would continue in prayer. I'll keep you posted.
Love ya'll-
Amy Lockwood

Crystal said...

Sue, I will continue to pray for you and Luke and the rest of your family. Luke, however, isn't disabled...he has been chosen to share God's glory and God's message. That in my eyes, would be an honor.
I fully believe that he and Abbie will walk, run, play,sing,dance, and eat together one day. God's timing is always perfect even though it's hard for us to see it or understand it's's PERFECT.
Much love and aloha: Crystal

Teena said...

Sue, I love reading about Luke. I am praying as it helps to see what all you have to do each day and I am praying that you figure out the best way to schedule everything in. Or at least almost everything.
I love reading your blog, hearing about all of you and praying for you. YOU all are so very special to us. We will be praying/thinking of you on the 13th. I think that is great about Luke standing and his eyes... GOD is so good.
your GA friends,
Billy, Teena, Michael, Mandi, Dakota, Alyssa, Wyatt & Wesley

Pam&Hal said...

Thinking of you all everyday. Thank you for the post about how your days go and the continued healing you see in Luke. I would encourage you to apply for help from such programs as SSD and DDD. If you think of it more as at this moment in time Luke is unable to do things. If the support such services could provide, whether monetary or whatever, can help Luke to become able or provide support for the family then you should apply. It is for children such as Luke, whether for a short period of time or longer term, that such programs exist. I am glad that my tax monies support such programs.
Love to one and all.

Mommy_2 said...

We continue to pray for Luke daily. We love to see his progress and thank you for sharing what a day in his life is like.

I wanted to ask everyone to pray for a family that lives near us in Wichita, KS. Their 2 year old drowned in bath tub this past week and the family is desperate for prayers and wisdom. Please visit the attached blog site.

Thank you so much!
The Tilleys
Rose Hill, KS

AkaRobynsMom said...

Hi Sue,
My name is Amy and I believe you and I have a very special lady in common, Mary T. She told me it would be ok with you if I wrote you. I am trying to set up a blogspot for Robyn and am in need of some advice. My email is if you would like to email me. If you want to look at what I have right is
I wanted to let you know that I pray for you and for Luke often.

Anonymous said...

Hello Little Luke, Just wanted you to know that we are praying for God to heal your body! I laid awake last night with you on my heart and in my prayers. As we went to church today I thought and prayed for you. May God bless you with a great week and know that we will keeping asking God to heal you. blessings and Love, Shane, Julie and Children