Sunday, February 26, 2006

Luke needs a touch from God once again!

I would like to ask all of you that believe in the power of prayer to once again pray for Luke. He has been sick now for the past month. I took him into his Pediatrition on last Thursday and he put him on Amoxillion for what he thought perhaps was a sinus infection. He has been having a lot of secretions for weeks and they just don't seem to go away. He also began to throw up daily about 2 weeks ago, he has not done this since they did his Fundoplication surgery, in October so it alarmed me. I called his Gastronologist and it was decided that he needed to be on something stronger than Zantac, they decided to put him on Provenset. We thought perhaps he was getting better until Saturday night when he began to take a turn for the worse. I was so excited on Friday night since he did not have to have any oxygen all night for the first time in 3 weeks, then on Saturday night as mentioned he had to go back onto oxygen and even more than before.

I would also like to ask for prayer for Amy as she leaves for Romania for a week on Monday morning. We are all excited about her opportunity to go and minister to the children at this women's conference they are putting on to encourage the women there. Please be praying for her safety on the plane and while she is there, that God will use her mightily as she ministers to the children and that we at home will have peace as she is gone. We are awed by the generosity of those that decided to support Amy financially, not only was she able to pay for her way, but was also able to pay for 22 women in Romania to attend the confrence and help two other women on the team go, God is so generous!

I know I mentioned in my last post about some different ones that need our prayers. I can't even begin to describe how heavy my heart has been for this precious family in Kansas, whose son Brett Jr. drowned in the bathtub, I have been crying out to God for His mighty touch for Brett Jr.'s brain, body and breathing to be healed. We continue to pray for Joanna, that did find out that she has a rare cancer and for her precious family as they have so many decisions to make and for comfort for them as they go through this difficult journey. Also for little Candace Joy who has been in the ICU for 3 weeks as they continue to do surgeries to try to stop the horrible infection that has been ravaging her body.

I will try to post again more often to keep you all up to date on Luke and these different prayer requests, thank you for your patience as I know I've not been very faithful in keeping you up to date. Once again I can not even begin to stress how much prayer Luke needs at this time, I don't want him to end up in the Hospital again. I'm extremely weary from getting up each night for weeks now and would ask for prayers for myself for my strength and joy to be renewed. Thank you once again for your faithful prayers, they are what carries us through these hard times.

Love in Christ,
Luke's Mommy Sue

Monday, February 13, 2006

What a day!

Today was a big day for Luke! Both he and I woke up not feeling so great. He has been struggling with a cold and congestion for about a week now, needing his nose to be suctioned so that we can get all the gargage out of him. I had a sore throat and sounded like a frog, I guess I would of loved rolling over and going back to sleep, though that just wasn't going to happen. I had been looking foward to taking him into the Dr. to let them see how wonderful he had been doing lately, well that just wasn't to be today. I dreaded taking him in as I knew that I once again had to tell the Dr. that Luke has been doing great lately, he's just once again having a bad day and you are seeing him on a bad day. I wonder if they think that I'm just a crazy mom, who is delusional and can't really see the reality of what it is to have a child like Luke.
I guess we kind of got a good report in that both our Pulmonologist and Gastronologist told us we don't need to return for 6 months. Silly me, I was hoping and praying that they would see some of the changes that we are seeing in Luke, why do I care so much? One of the Dr.'s did say that he seems to be doing good and that should of been enough. Our Gastronologist did decide that we can schedule a swallowing test to see if we can begin to feed Luke into his mouth again, that would be a huge step forward for Luke if he were to pass this test.

Some days I feel so discouraged and know if it wasn't for those that are continually uplifting our family in prayers, I would begin to feel hopeless. I will be honest it is so hard at times to keep such a strong faith and yet I will never stop believing and knowing that God is going to heal Luke and one day I will be able to take him back to those wonderful Dr.'s and show them a walking, talking miracle boy.

My heart has been heavy for some other precious children this week, I learned a few days ago about a little 2 year old that drowned in the bathtub last week, it is so similar to Luke's story and they are not giving up on his miracle, please pray for Brett Jr. his blog site is, I have also been praying for a little girl named Candace Joy she has been very close to death this past week as she has been fighting off some very bad infections, her site is I know many of you read the comments and some of you may of read about Joanna, her mom Amy has been praying for Luke for a long time and now her little girl Joanna has been diagnosed with cancer and needs a miracle from God. I've also been praying for a sweet prayer partner, her name is Shirley, I've never met her personally, but her and her husband pray for Luke and our family every day and now she is struggling with an very serious infection in her hip. So many major prayer requests, I'm so thankful that we serve such a BIG GOD!

Just to let you know our Nurse Mary is coming back to work this Wednesday, it will be great to have her back two days a week, we still don't know if our Insurance Company will continue our nursing past this month, they are still reviewing our case. I am praying that God will have favor upon our family these past few weeks without some help have really been fatiguing on me, though I'm thankful that God has given me great energy each day to get most of things done that I need to do, I'm just finding that I don't get a lot sleep each night and know it's bound to catch up someday.

Some of you may already know that Amy is going back to Romania on a missions trip. Her and I went two years ago and she has known for many years that she would like to go back to minister again some day. Well God has given her the desire of her heart and it has been so amazing to see His provision to pay for the trip as people have felt lead to help support her as she goes. She will be ministering to the children of the Women that are attending a Women's conference, this conference has changed many lives as they have learned that there is hope in there in the hard and sometimes hopeless lives they live. Please be praying for her as she will leave on February 27th, she will be gone for one week, we will miss her greatly but are joyful that she is going.

I would like to wish you all a Happy Valentine's Day,
you are all very precious to us!

Love in Christ,
Luke's Mommy Sue

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