Saturday, January 29, 2005

The "Mystery of Luke"

Wow, what a week, it's not quite over but getting close. I did try to blog two nights ago, thinking that if I blog more often they won't be so long, but after writing it out I lost it and it was to late to start over again.

I finally realized something last weekend, I am always talking to those around me about the "mystery of Luke," what you ask is the "mystery of Luke?" It is trying to understand why he sleeps some nights so wonderfully, then the next night is up for two to three hours, why some days he seems to tolerate swallowing a few bites of applesauce and the next day we can barely get him to swallow one bite, why one day he coughs and has to be suctioned constantly and the next he barely has anything there to suction, why some days he seems to take a nap and the next won't sleep a single second, I think you get the idea. I realize this is God's way of getting me to keep my eyes off what Luke is doing or not doing and keep my eyes on the Lord, He is continually reminding me that He is the one that will heal Luke and it doesn't matter what we see or hear from Luke or his Dr.'s, He is in control. I was saying to a friend of mine one day how difficult this is for me, but I know that this is what the Lord truly desires. I have probably shared these verses with you previously, when Luke was still in the PICU someone gave them to us, but I want to share them with you again, I read these verses out loud to Luke and to myself since they are over his bed numerous times a day, Habakkuk 2:2 & 3 And the Lord said to me "Write my answer on a billboard, large and clear, so that anyone can read it at a glance and rush to tell the others. But these things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, do not despair, for these things will surely come to pass. Just be patient! They will not be overdue a single day! I know without a shadow of a doubt that the Lord is healing Luke, He is working on it each day and though I wish it was done, I realize that God's timing is perfect and when He is finished we will point to God and God alone as the one who healed Luke. I was reminded today as I received a e-mail from a faithful servant of the Lord who has daily prayed for Luke, she does not know us, but she has prayed everyday for our family and Luke as so many of you have done. Anyway, she said that she is a nurse and she knows that God is the one healing Luke, she has worked with little ones with the same brain damage as Luke and they have never even moved a muscle or came out of their vegetative state. To God be the glory, great things He has done!

Luke has had some good days this week and some hard days. Monday was the busiest day by far, the Dietician said, she was pleased that he had gained a pound, since he had lost one the last time we were there. She wants us to start feeding him more each day through his G-tube which goes straight into his stomach, instead of his J-tube that goes into his lower intestine. Needless, to say this is time consuming and he just is not taking in as much as we would like to see, but once again I have to rest in knowing that the day will come when he will eat normally once again, but in the mean time please pray that he will be able to tolerate more and also that he will truly get a good swallow again, not just letting it go down his throat, but pushing it down with his tongue. At his appointment to get fitted for his new leg splints he was casted, they will be making him a splint that will have a hinge in the knee area so that we will be able to get him to keep his legs bent once again, it will be a slow process, but at least we are doing something toward this goal. On Wednesday when we went to the PT, she was so excited once again at his progress, he is holding his head up so much better and keeping his arms relaxed every once in awhile, which is so great since they used to be almost impossible to straighten out.

Well I said that I would try to keep these blogs shorter, so much for that goal! I hope that you are all having a wonderful week and that you realize we appreciate your support and prayers more than you can ever begin to imagine. One quick side note, I know that I mentioned that we were going to take in Isaiah our 5 year old to the Dr. for his ear, will we found out that he had a perforated ear drum, he is on antibiotics, we are praying that it will be healed when we go back in two weeks. He has had problems off and on with his ears and hearing for a while now and I had planned to get him in for a hearing test on Tuesday, which I had to cancel for now, please be praying that God will heal his ear drum and that he would start to hear better. Also keep Lily in your prayers she seems to be kind of colicky in the evening, this is new for us we've never had a colicky baby before. May God bless you today with an awesome day.

Love in Christ,
Luke's Mommy Sue

Sunday, January 23, 2005

A much needed update on Luke

Good morning, I'm writing this to you very early on Sunday morning. I'm sorry I haven't gotten to blog earlier this week. It's been a very busy week to say the least. Our oldest girls Amy and Natalie are visiting over east of the mountains at their cousins house celebrating her Birthday this weekend. Let me tell all, for the whole world to hear, I miss them even when they are gone for a couple hours let alone a whole weekend. They help more than any of you can imagine! They are going with Daniel next weekend on a Winter Retreat with the church that Daniel is part of for Generation Training Center, I'm praying it will be a time of great refreshment for them as they get away for a much needed break from home and that it will be a time of spiritual renewal as well.

I know many of you are wondering how all the appts went this week. Well let me begin my saying we had to reschedule two of them, our pulmonologist Dr. Ricker volunteered to go with a medical team to Sri Lanka to help with Tsunami victims. I'll be honest with you, when I first heard that I had to change the appointment, I was very disappointed, because I want Luke's trach out so bad, but then I had to say to myself what a selfish person you are Sue, here are these people suffering so greatly and you are begrudging them the help they desperately need. Needless to say, since my attitude adjustment, I've been praying for the team that they are able to not only give the medical help that is needed so greatly but that they can also be a bright light for Jesus which to me is far more important. I also changed our Dietician appointment so that I can better utilize our very full schedule.

We did have the swallow gram done on Tuesday. It went okay, not the best it could of gone, but by far not the worst either. After waiting an hour for the Dr. to arrive Luke was not as comfortable as I would of liked him to be for the test. He did swallow a little bit on his first two bites of food, it showed that it went the right place, which was great news, but it also showed that he still does not have a good swallow, which we already knew. It was determined that we can continue to feed him the applesauce with rice cereal that we've been feeding him, but no thinner consistency at this time.

Our Friday appointment for his new leg splints went okay, except for the fact that their computer was having a problem getting a new picture of Luke's legs. I'm very happy to report that though Luke is definitely having a problem bending his legs and keeping his hips aligned, it was said that it was good we got him in when we did so that they can address these issues now before too much joint and muscle damage is done, due to lack of use. Our wonderful Physical Therapist, Allison is working with them to make splints that will help address these issues. Once again I'm thankful that though God has not chosen to bring about complete healing yet we have so many wonderful people coming beside us to help with the healing process. We have all been giving many massages this week and it is paying off, Luke's legs are not quite as hyper extended as they had been for so long.

Next week will once again be a very busy week, oh well this is my lot in life for this season. I will give you example of our schedule so that you can be praying that we are able to get it all done. On Monday we have homeschooling of course, then in the afternoon at 1:00 P.T., at 2:00 our rescheduled appt. with the Dietician and then at 3:00 our rescheduled appt. with Hangers for his splints, pray the camera is working this time. Then on home for dinner and our never ending laundry has to be done this day. And I need to take Isaiah to the Dr to have his ears checked, as there is colored fluid coming out. On Tuesday schooling, then Amy, Natalie, Isaiah and Ezekiel, will go to the YMCA, while Luke, Lily, our nurse Mary and I go to the hyperbaric place for a treatment, and then back to the Y to pick up the kids and go straight to the hearing center for a hearing test for Isaiah. He had tubes put in last year and his hearing is still not doing very well so we are going to get that checked out this week. Wednesday, our nurse does not come until 11:30 so that we can go to church at night, so a busy morning for me getting Luke ready for the day by myself while the girls go to math and then off to piano lessons. When they get back we take Luke in for his 3:00 P.T. appointment, the girls will do weekly chores including our never ending pile of laundry while we are gone, then its back home to get dinner done and everyone ready for church at 7:00. Thursday my day is going to start early with an appointment for me to get my eyes checked, I lost my glasses last week and I sure am missing them, then school of course, take the kids to the YMCA again, no appointments for Luke today, so that I can get caught up on my grocery shopping and other running that I need to get done, pick up the kids at the Y and go to our weekly visit at the Library, then home again. The ladies at the church are putting on a Shower for Lily this evening so the girls and I are off to the church, while Gordy is thinking about getting someone to watch the boys so that he can still take Luke out for our weekly HBOT treatment in the evening, well see if this happens. On Friday no appointments for Luke, just school, house cleaning, laundry again, girls packing for the weekend, then I will run them down to Centralia in the afternoon to leave for the retreat. Our weekend will be without the girls and Daniel, hopefully we can maybe take it easy on Saturday! There's a little glimpse of life in the Searles home.

We had some good news this week, I called our neurologist to try to get Luke in sooner then his March 15th appointment, because we want to get him off the seizure medicine he's been on since the Hospital. He only had one seizure in the Hospital a week after the accident, anyway we could not get an appointment, since they have a full schedule until June, but they did say they would schedule an EEG for us to test him so that we don't have to wait until his next appointment to get that done. He had two EEG's in the Hospital and both showed no seizure activity, so we are praying that this one won't show any either, then we can get him off this medicine, which inhibits brain activity and also causes drowsiness.

We sure have enjoyed getting some of your Christmas newsletters and pictures, if you would like to send one, once again you can e-mail us at to request our address. Thank you for your continued prayer, Luke is getting better, slowly but surely. We pray that you have a blessed week! I'll share my favorite verse with you, Philippians 4:13, I can do all things through Christ who strengthens me, I have to remind myself daily not to try to run my life without Christ's help, it goes so much more smoothly with Him in the center of it.

Love in Christ,
Luke's Mommy Sue

Tuesday, January 11, 2005

Guess who slept ALL night, last night?

If you guessed Luke you win! WOW, what a surprise to get up this morning and find out that Luke did not wake up until 7:30 a.m. this morning, this is the longest he has slept since the days that he was in the Intensive Care Unit at the Hospital. You who have been praying for Luke and the rest of us to get sleep just know that God is listening and He is answering your prayers, so please don't give up!

We also want to let you know that we are getting Luke's legs to bend a little bit. We started taking him to my good friend, Brooke who does an excellent job at message therapy and she started to teach us how to work on getting his legs to loosen up. Sue, Amy and Luke's nurses have been working with his legs and it is paying off, Praise the Lord.

My prayer this week, is for me to keep my eyes on the Lord. The Bible verse that keeps coming to my mind is: Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God, and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Philippians 4:6. I could be getting very anxious about his Swallow gram test next Tuesday 1/18/05. It is so important for him to pass this, so that we can start getting him help to eat more through his mouth and getting him to swallow more often. As I mentioned in our last Blog he is eating now through his mouth but only about 6 or 7 bites at a sitting. Which is great news but how we look forward to the day when he will eat more. We also have a appt. with his pulmonologist on Thursday 1/20/05 and we are praying that he will allow us to take our first step at getting out his trach, this is a slow process, but we are ready to begin. Someone on the blog asked why he has a trach, the answer is because he was unable to keep his passage way cleared with his saliva and he was not able to give a good cough so that he could clear it out. He has always been able to breath without it, which has been a real answer to prayer.

We continue to take him in for more HBOT treatments, it was exciting last week to see him try to sit up during the treatment on Wednesday. I wasn't there but Gordy, Natalie and his nurse Mary came home all excited about it. These next two weeks we are hoping to get in at least 3 more treatments, because of all the other appts. he has during this time. We were once again blessed on New Years Eve, someone dropped off a check for $2000.00 to our church, we continue to be amazed at God's goodness to us during this long slow journey to complete recovery. It was given anonymously so if you are reading this THANK YOU!

Hi, After futher thought and realizing that we dont have control over who sees this, I decided to remove our address from this post. If you want our home address, please send an e-mail to and we will be glad to provide you with our address. We would love to hear from you and if you sent out a Christmas Newsletter we'd love to get one, it is so much fun meeting the people that are so faithful in praying for our family. Just know that we are humbled by you continued prayers and support, God is answering them, so please don't quit!

Love in Christ,
Luke's Mommy Sue

Monday, January 03, 2005

Happy New Year!

We just wanted to wish you all a Happy New Year. We pray that the Lord will bless you all in 2005. We have some great news to share with all of you, Luke began to eat through his mouth last Thursday night. We got a call to schedule another swallow gram on January 18th, so I was thinking that I needed to get him ready and tried to give him some pudding and he swallowed it. I thought that I would than try some applesauce and since then he has been eating daily through the mouth. It is very time consuming to get him to take about 2 tablespoons of baby cereal and applesauce, but it takes about just as long to get him to tolerate a bolis feeding through his G-tube before he begins to spit it out. I was crying and we were all congratulating Luke and he truly seemed so proud of himself.

I also wanted to let you know that Luke is able to express himself more and more each day. It used to be the only way we knew that Luke was upset was to watch his left eye and if it turned red he was hurting or upset about something. Know all we have to do is watch his face, he has definitely let us know if he is upset or happy about something, it so good to see his emotions being expressed once again.

We are getting back into a busy schedule. We are trying to get Luke in for Physical Therapy at least once or twice a week, also a message therapy once a week beginning this Friday. We also are taking him at least twice this week for a HBOT treatment and hope to be able to continue to get him in at least once or twice a week. We have a swallow gram schedule on January 18th and a pulmonologist appt and dietician appt on January 20th. Needless to say we are going to be very busy, but are hoping that these things will continue to keep him progressing. We are hoping at his pulmonologist appt. that we can get him to start Luke on a Passy muir valve for his Trach, which will allow him to breathe into his trach but out through his mouth or nose. Which will allow him to begin to make noises again. The few times he has made a little noise he has looked so pleased with himself.

Please keep Gordy and I in your prayers we haven't been able to get much sleep lately our regular night nurse has been sick and before that she worked a few nights at the Hospital, so we've only had a night nurse for 3 nights since Lily was born. At times we are just extremely exhausted with Luke waking up at night and also with a newborn wanting to eat and not always sleeping at night, needless to say our nights have been very hard at times.

Our prayer for you all this year is that you will learn to Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him and he will direct your path. Proverbs 3:5 & 6

Love in Christ,
Luke's Mommy Sue