Thursday, March 30, 2006

We have made it through another good, yet sometimes trying week. Last week, Jonathan did a little bit better with his sleeping. He slept longer periods of time between crying each night, and seemed to sleep longer during the morning hours. That means that we started most of our school days a couple of hours late, but we manage to somehow get all of our school work done. Nothing else might get done, but we do get school work finished. Jonathan had another good drum lesson last week. I can really tell that he is making progress in learning to play the drums. It is very encouraging and he is very proud of his accomplishments. We had a nice weekend at home. We had our good friend Daniel over on Saturday. Daniel is a very good piano player and we enjoyed listening to him play for us. We had dinner and spent the evening playing Disney Scene It with him. We had a great time. On Sunday, Jonathan did a great job of getting around on his own. He left and went to class by himself on Sunday evening, without being able to tell me because church had already started. I was very proud of him. Grandpa Cooper came to our church Sunday evening and as soon as church was over, Jonathan took off and went home with him and waited for the rest of us to get there. It is so nice to see some of that independence in him. I hope that as time goes on, he will get better with that. Our nights of sleeping a little better came to a halt on Sunday evening. He was up and down all night long. When he has a night like this and then wakes up crying and upset, I can really see the effects on him during the day. On Monday, he was very lethargic and not at all his usual self. When I see him like that, then I begin to worry about him. I had him take a nap during the afternoon and he cried out 5 times in a 2 hour period. He slept a little better Monday night, but not much better. Mrs. Lori is back from India, so we went to see her on Tuesday morning. She said she thought his walking seemed better, which is a comment we have gotten from several people just recently. While she was working on him, Jonathan mentioned that what she was doing was hurting him. She has done this to him almost every time he has seen her, but this is the first time it has hurt him. Mrs. Lori said this was good. She said she was able to see some change in him even though she has not seen him for 2 weeks. She also commented that he seemed to be able to get up off the table much easier. After we left Mrs. Lori’s house, we ate our lunch on the way to horse therapy, because there is only 30 minutes between those two events. We had another great time at horse therapy. Skip is beginning to know Jonathan better. Each week he is responding to him better and better. Mrs. Tammy is very encouraging. She takes every opportunity to teach Jonathan something new each time his is there. Jonathan is remembering things better also. He knows where to get everything and does as much as he can to get Skip ready to ride. Last week, Mrs. Tammy taught Jonathan how to turn the horse. This week when she asked him which way he was going to turn Skip, Jonathan immediately did the “Neck and pocket” move and turned Skip completely on his own, without any help. We were both pretty surprised that he remembered as easily as he did. So for the most part, Mrs. Tammy just walked beside him and let Jonathan do all the leading. I was very proud of him. Afterward, Skip got to enjoy more carrots for the kids. Jonathan and Skip are developing a real bond between each other. Skip will put his nose down when Jonathan talks to him and let Jonathan kiss him and talk to him up close. It’s pretty neat to watch. Jonathan is doing very well in school. He started to learn division this week and is pretty pumped about it. So far he is picking it up very well. Last night at church, Jonathan was very talkative and told everyone he could how good he was doing in division. He talked a lot more than he usually does. He said five verses and is only five sections away from finishing his book for the year. Instead of taking the elevator, he walked the stairs everywhere he went. After church, before we went to bed, the girls were doing some gymnastics for us. Jonathan decided he wanted to try some of his own. So he got down on the floor and tried to do some things. But his main focus was trying to get up off the floor by pushing up on one knee instead of getting up on both feet and pushing up with both hands from the floor. If he pushes up with his left leg, he can do it without much trouble. He did that several times and then decided to try to stand up without using his hands at all. It took him a few tries, but he was able to push himself up to a standing position by only using his legs. It was awesome! He was able to do that three or four times. Then he stood up real straight on his knees the entire time we said our prayers before bed. He looked more confident and able to do some of these “normal” things we take for granted. I know that God is still working and that progress is being made in Jonathan’s life, no matter how small or how long it takes to see it. The girls decided they would work with Jonathan every day helping him with some stretching and exercising after school. Today, Sarah did some of her gymnastics stretches with him and they played limbo with Jonathan. It’s neat to see them take time to work with him and help him. I can tell so much difference in Jonathan when he sleeps longer periods of time. Yesterday and today he was so much more active and alert because he slept from about 6 am – 10 am without waking up. I think if we could just get this sleeping under control, it would do wonders for him.
At the beginning of this week, I decided to try and spend some dedicated time in prayer about what to do regarding seeing a neurologist. I can’t tell you the battles that go on in my mind over what to do. On Monday, I had one neurologist that had been recommended to me. On Tuesday I decided to go ahead and call and see how long it was going to take to get an appointment. I made a phone call to the Lewisville office and found out that this man no longer comes to Lewisville; he only works out of Ft. Worth. As soon as I hung up the phone, I immediately called the Ft. Worth number. Something happened to my phone between those two calls. While I could hear them speaking, they could not hear me. I tried 5 times and was unable to get through. I decided at that point that maybe this was not what I was suppose to do at this time, so I quit. On Wednesday morning, I had an email with the names of 8 other men who were recommended to me by a friend who is a pediatric nurse. Most of these men are on our insurance. So I have a list of 8-10 men to take before the Lord to see who He will direct us to. I also called about the results of the Cushing’s test since I had not received a call from them yet. I was told that they did not have any results to share with me yet, but they were going to check into it. Hopefully we will know something soon.
As always, thank you so much for checking on us and for your faithful prayer support for us. Please continue to earnestly pray for healing for Jonathan’s sleeping. Pray that God will touch that part of his brain that needs healing and that he will be able to sleep peacefully and get the rest that he so desperately needs. Pray that Jonathan will continue to do well in school and with his drums. Pray that he will continue to make progress physically and that he will continue to improve with the horse and cranial therapy that he is currently receiving.
I hope you will take a minute to go back and watch the Easter video on the website. Easter was 1 year ago this week. It was Jonathan’s first time out of the hospital in 3 months. It is one of the most precious memories we have had on this journey. After Jonathan spoke to our church family that day, Donny Forson prayed. In his prayer, he prayed for those who were there that had been praying for something and had yet to receive their answer. He prayed that Jonathan’s testimony would be a reminder that God is still listening and God is still at work, even when we can’t see it, or when we feel like giving up. God spoke to me as I watched and listened to that video clip, because I feel like that is where we are with this sleeping issue. I would ask you to earnestly pray for me as I seek God’s face about this over the next few days. I have spent time each day this week in a specific aspect of prayer, and I am now at the time to go before the Lord and intercede for Jonathan and make my request known to God. I am asking for wisdom and direction regarding the neurologist. I have committed not to make any contact until next week so that I can thoroughly pray over this issue. I don’t want you to think that the rest of the family is not part of this process. We are all constantly in prayer about this. This is my own personal journey and commitment at this time. I would covet your intercession for me over these next few days. Pray that we will know God’s will, hear His voice and see His direction for us. The Scripture I am focusing on during this intercession time is: Matthew 7:7-8 7 "Ask, and it shall be given to you; seek, and you shall find; knock, and it shall be opened to you. 8 "For everyone who asks receives, and he who seeks finds, and to him who knocks it shall be opened. God bless you for your faithful prayers on our behalf. I leave you with this precious promise from God’s Word that I am standing on tonight.

Isaiah 65:24 "It will also come to pass that before they call, I will answer; and while they are still speaking, I will hear.

Thursday, March 23, 2006

God has faithfully brought us through another week. Since last week was spring break, we only did a couple of days of school work and we had the week off of Awana as well. On Friday, we spent most of the day at the Ft. Worth Zoo with some of our new homeschool friends. Although I had not planned to take this day off from school, it was a much needed outing and we all enjoyed it very much. I contemplated taking the wheelchair, which we usually do when we are going to be doing a lot of walking, but I decided against it. So Jonathan walked all around the zoo for about 5 hours. He and I did sit down about three different times to rest while the others went looking at some other stuff. It was a pleasant day and we enjoyed the chance to get to know our new friends better. On Saturday, we spent part of the day again with our family in Ft. Worth celebrating Grandpa Smith’s birthday. Last year, we celebrated both Aunt Susan and Grandpa Smith’s birthdays at the OCH. We are so grateful to be celebrating with them this year at home. On Tuesday, we had our appointment with the new therapy group in Corinth. We talked with the therapist that I originally spoke with on the phone. When she first began talking to Jonathan, she commented on his Casting Crowns T-shirt and said she knew that group. He told her that KLTY plays them on the radio and she said she also listens to KLTY. After talking a few minutes, she said, “Wow, isn’t that neat; you’re a Christian and I’m a Christian!” What a neat, unexpected way to start out the conversation! She asked Jonathan what he wanted to work on. He told her his sleeping, his balance and losing some weight. We talked about his previous therapy and she explained what they do. Everyone is NDT trained, which is Neurological Development Technique (I think). She said that the hospitals work to get you functioning again, walking, talking, using your hands/arms, etc. They come in and “nit-pick” what you have learned and help you function more accurately. It is all done from a neurological perspective. For instance, by watching Jonathan walk, she said his feet are outside the hip range, which causes him to waddle. They will train him to bring his feet back in line with the hips and take more accurate, forward steps. She watched him get up from the chair when we were about to leave and said they would teach him how to get up from the chair without pushing himself up. She also asked about his vision, noticing his glasses. After explaining his vision issues to her, she recommended and gave me information about a neurological optometrist in the area that she said would be great to see. I had not expected to receive any direction on his vision, so that was an unexpected blessing. Because of a breakdown in communication in their office, we were not on the “big” schedule, so we didn’t get as much time with them as we were hoping. They are suppose to be calling and setting up a time for us to come back and have an evaluation done and then get their recommendations for treatment. I was a little disappointed that I did not really get what I was hoping to get from this visit, however, we were blessed to get some things that we were not expecting. Before we left, I did ask her if she could give me any suggestions about his sleeping, which is what I was really hoping for. She suggested that Jonathan take a hot, relaxing bath, then to rub him down with lotion and a soft brush. Apparently, someone has come up with this kind of sensory therapy to help with sleeping. We did exactly all of that, hoping it would help him sleep better. Actually, he woke up within 30 minutes of going to bed and was up every few minutes until 3 am. I spent most of that time searching the internet again for some information as to what might be causing this. The only thing I found that closely mirrors his symptoms is some kind of nocturnal frontal lobe epilepsy – seizures that happen mostly at night and sometimes during daytime naps. This, of course, was not what I was hoping to find. I’m not saying that this is what Jonathan has. To be honest, I have no idea what is causing these sleep issues. It could be these seizures, it could be some type of disfunction or damage to the part of the brain that controls this, or it could just be the process of healing. I guess what I realized that night is that we need to see a neurologist and have some test done in order to find out what the problem is. You know what that does to my level of discouragement. I just sat at my computer, in between Jonathan’s cries, and cried as I talked to the Lord about this. He’s gone through so much already, Lord, could you just heal this and spare us any more test or doctors? So as much as I hoped to get an answer for this today, I guess it was just a stepping stone to the next path we take, which is finding a neurologist. W e have not seen a neurologist since we left the hospital, so I am in the process of gathering recommendations. As far as Jonathan’s sleeping goes, there is still no improvement. We are desperately trying to continue to walk by faith, not by sight, and to trust in the Lord with all our heart, and not lean on our own understanding. Some days that is easier to do than others. That is not all of Tuesday’s news. Jonathan had his second therapeutic riding lesson that afternoon. It was much colder this week than last week, but Jonathan had another great lesson. He did all of the same things this week as he did last week, but this week Ms. Tammy taught him how to turn the horse while he was riding the trail. It’s called “neck and pocket.” Whichever way he wants to turn Skip, that hand goes back to his pocket, while the other hand goes to Skip’s neck. He turned three or four times while he was riding Skip and did a pretty good job of it on his own. We also remembered to bring carrots for Skip this week. Jonathan loves Skip and hugs and kisses him many times during the hour that he is there. I think Skip and Jonathan are going to be great friends.
Thank you so much for continuing to check on us and pray for us. We are still in need of your prayers. Please continue to pray for Jonathan’s sleeping most of all. I know that many of you are specifically praying for this issue, and I can’t tell you what a comfort that is to me. Because of the lack of sleep that I get from dealing with this each night, it is easy for me to get discouraged and I find myself fighting depression from time to time. Please pray that God will continue to sustain me with His grace and that I will continue to trust in Him for this healing, even when there is no change. Pray that we will know God’s will and direction regarding this new therapy option. Pray that we will have wisdom as we seek to find a neurologist and consider this optometrist for Jonathan. Claim this verse for us as we consider all the decision we must make for Jonathan’s continuing progress: Isaiah 30:21 Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, "This is the way; walk in it." Pray for the complete healing of Jonathan’s brain. Pray for complete healing of Jonathan’s vision. Pray for complete healing of Jonathan’s diabetes. Pray that we will let God heal Jonathan in His time, according to His perfect will. Continue to pray for the results of the Cushings test; we have not heard from the doctor regarding this yet. God has given us many promises along our journey. God’s word says: 2 Corinthians 1:20 For no matter how many promises God has made, they are "Yes" in Christ. And so through him the "Amen" is spoken by us to the glory of God. When we feel like life is at a standstill, as it seems to be for us right now, we look back at God’s faithful, loving, miraculous work that we have witnessed and recorded on this website, and we stand firm, claiming His promises even today. We say “Amen” to this precious promise of God. The Lord bless you and keep you.

"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," says the Lord. ~ Habakkuk 2:3

Wednesday, March 15, 2006

We continue to have good days and positive experiences each day and yet we are still dealing with some ongoing issues that we just can’t seem to get resolved. But whether good or bad, we can praise God for His faithfulness to us and His sustaining grace that carries us through each day. Jonathan is progressing really well with his drum lessons. Each Thursday evening we go to Mr. Brian and Mrs. Debbie’s house for Jonathan’s lessons. I get to sit downstairs and visit with Mrs. Debbie while Mr. Brian teaches Jonathan upstairs. Mr. Brian is a wonderful teacher and loves Jonathan very much. This past week as I was sitting downstairs listening, I heard Mr. Brian start Jonathan’s lesson with prayer. I guess I never heard this before, but Jonathan said he prays before he starts each lesson. I was really touched by this. We are so grateful that God has brought Mr. Brian into Jonathan’s life. We also took the urine collection for the Cushings test and we took it to the lab on Friday. We have not received the results back yet. We are still making this a matter of prayer. After finishing school on Friday, we spent the rest of the day with our family in Ft. Worth celebrating Aunt Susan’s birthday. We had a nice restful weekend at home this weekend, our first free weekend since basketball season started. It was nice to have the whole day to ourselves. Because of spring break this week, we took Monday and Tuesday off from school so that the kids could hang out with some of their friends. On Tuesday, Jonathan went to his first therapeutic riding lesson. When we got there, we found out that instead of having Ms. Linda as our therapist, we had Ms. Tammy, and instead of having Sterling as his horse, we got Skip. It was a great experience for Jonathan. We learned the routine of getting the horse ready to ride. After Ms. Tammy brings Skip from the field, Jonathan will lead him to the area where he will get his saddle pads, saddle, and girth and put Skip together after a good brushing. She taught him how to talk to Skip when he approaches, how to walk behind Skip so that he doesn’t scare him, how to lead Skip around (always on the left side), and what commands to give him to stop and go. Jonathan rode Skip around the trail and then took everything off, put it back up and brushed Skip again before leading him back to the field. Ms. Tammy was very impressed with Jonathan. She said he handled Skip as though he had done this before. He sat up very straight while riding Skip and did not seem nervous at all. We are very pleased with our experience so far and look forward to getting to do this each week. Our good friends, Chad, Sarah, Lindsey and Mrs. Laura Jones, left Jonathan a cool picture to welcome him to Spirithorse riding. Chad and Lindsey both have lessons there and they are the ones who helped us get started out there. Everyone was pretty impressed that Jonathan already had mail there on his very first day! Thanks for the encouragement!
While we had pretty good days this last week, we have not had good nights. Last week I thought the melatonin was working, so I even gave him 3 tablets a couple of nights, hoping it would make it even better. Unfortunately, those were some of his worst nights. I backed the melatonin down to 2 tablets again and then just quit giving it to him. It is obvious that this is not our answer. These last few nights have been rough. Jonathan might sleep for an hour and then spend the next 2-3 hours crying every 5-10 minutes. Sunday night was one of those nights. Jonathan’s friend, Zachary came over early Monday morning and spent the day playing with him. After a bad night, I was not sure that was going to be a good idea, but it turned out to be a very good thing for Jonathan. He fell asleep while we were watching a movie that evening and woke up twice crying and disoriented. He was up and down all night Monday night. He even woke up crying in the morning. Jonathan went back to sleep after breakfast and woke up a couple of times, again crying and disoriented. He seemed so tired and weary. I was worried that it was going to put a damper on his therapeutic riding experience, but he was able to handle it fine. I couldn’t help but worry that this is taking its toll on Jonathan and that it could be hurting him physically. I spent some time crying out to God about this. I just don’t know what to do and I can’t seem to find anyone who can help me with it. I just asked God to help me and show me what to do or who to go to. The Moms in Touch group that I am part of prayed with me about this Tuesday evening. After our prayer meeting, I checked my messages. I received a message from a Pediatric Therapy office that had been recommended to me that I had called on Monday. I felt that this was God’s answer to my plea for wisdom and direction. I called them back today and I am very hopeful that this may be the next step in the direction that God wants us to go. I shared with them the desires we have for Jonathan’s ongoing progress as well as the sleeping issues that we are facing. Her responses encouraged me to hope that they will at least try to help us deal with this issue effectively more than anyone else has. We have an appointment with them next Tuesday morning at 9:15 am. I wish it were this week, but we will continue to pray and ask for God’s healing and intervention in the mean time. Fortunately, Jonathan slept better last night. He woke up without crying this morning and we were able to get back to school today with no trouble. Since the kids have had friends over the last couple of days, and we have not done school, I have taken some time to spend reading the Bible, praying and reading a new book. My heart has been heavy these last few days over this sleeping issue. I continue to pray but it seems like heaven is silent. I know that God hears my prayers but why hasn’t He answered this yet? It’s been going on for 6 months now and it’s not getting any better. I read through the journal last year at this time and God seemed to be answering our prayers left and right, day after day. I feel like I have fallen off that mountain and I can’t find my way out of this valley. Yesterday I had this feeling of fear and anxiety that filled my heart as I watched Jonathan struggle just to make it through the day, falling asleep on three separate occasions. My heart aches for him to be able to overcome this. After our prayer group and receiving that hopeful message from the new therapy office, I read a chapter in my book before going to bed. The chapter was entitled “Enjoying God’s Presence.” I was encouraged by these words:
“Sometimes we’re challenged to believe God is with us simply because He promised. That’s faith. Heb. 13:5 assures us: “Never will I leave you; never will I forsake you.” We cannot escape God’s presence, but we do not always sense His presence. God’s presence in our lives is absolutely unchanging, but the evidence of His presence is not. On some occasions God may purposely alter the evidences of His presence to bring the most benefit from our experience. Sometimes we receive the most benefit from seeing many visible “prints” of His invisible hands during a difficult season. (That was last year at this time) Other times we profit most from seeing fewer evidences. God does not love us less when He gives us fewer evidences. He simply desires to grow us up and teach us to walk by faith.” (That’s were I feel we are this year). There is so much about our God that I continue to learn. Even though these days have been difficult, my God remains faithful.
I know that many of you remain faithful to check on us and pray for us. You are all such an incredible blessing to us. Please continue to pray for Jonathan and the things that he is facing right now. Continue to pray for the results of the Cushings test, that God would reveal His healing and that the levels would be within normal range. Please continue to pray earnestly for healing of Jonathan’s sleeping problems. Pray for complete healing of his brain, his vision and his diabetes. Please pray that God will continue to show us His will and His direction as we meet with this new therapy group next week. Pray that we will have wisdom and know God’s voice about what to do. Pray that we will be able to get the help we need to assist us with his sleeping issues and that Jonathan would continue to progress in his walking and gain strength in his hips, legs and feet. Praise God for the wonderful blessing of therapeutic riding that we received this week. Please remember to pray for Ms. Tammy and for our new horse friend, Skip. I want to leave you with a Scripture that I read from little Benjamin’s Mom. It spoke to me and mirrored my own heart and mind tonight. May God richly bless each of you this week.

Psalm 5: Giv e ear to my words, O LORD, consider my sighing. 2 Listen to my cry for help, my King and my God, for to you I pray. 3 In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation… 8 Lead me, O LORD, in your righteousness because of my enemies-- make straight your way before me… 11 But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. 12 For surely, O LORD, you bless the righteous; you surround them with your favor as with a shield.

Wednesday, March 8, 2006

This has been another wonderful week, and we have lots of neat things to share. The highlight of our week was the end of an incredible Upward Basketball season. This has been such a positive experience for Jonathan and it has been such a blessing for us to watch. On Saturday, Jonathan played his last game. Jonathan got to play at least three full periods and a half of a period. He got to bring the ball all the way down and make a basket two times. He did lots of running and did a pretty good job of defending his man. But that’s not the best part of the story. Jonathan’s team started out the game really well and got a good 12 points or so ahead of the other team. There were a couple of guys on the other team who had not made a basket yet in a game. A couple of different times, the teams stood back and allowed these guys to make their baskets. What was neat was seeing our own guys, after having learned to work with Jonathan on the “J Play,” rebound the ball and hand it back to these boys until they made their basket. This team of boys blessed us beyond words. Their coaches deserve the credit for the life lessons these boys learned. They all deserve White Stars, which stands for Most Christlike in Upward, in our book. On Monday night, we finished out the season with the Upward Award Night. This is undoubtedly the loudest, most insanely crazy event that we will ever attend. And it is suppose to be like that! Each year they choose a male and female Coach of the Year, as well as a boy and girl from each grade to receive the White Star Award for the year. Our awesome coach, Ben Alves, won the Coach of the Year award. There was no man in that Sanctuary that night that deserved that award more than this man. I wish you all could have watched him each week with the guys. He was chosen by God just for Jonathan. He was tough with him and made him work for each basket he made, but his tender care for Jonathan was always apparent. He had an entire team to teach the game of basketball to, and yet he was very sensitive and attentive to Jonathan’s every need when he was present. Jonathan grew to love and trust this man which is another gift from God. We were blessed to have him as our coach. Another beautiful and humbling moment for our family was when Jonathan received the White Star Award for the 4 th grade boys. I was moved to tears to see his entire team stand and cheer when his name was called. He received a medal and a card that shared what his coach had to say about him:

"I would have opted for my entire team to get the award considering how they have grown in their sensitivity towards Jonathan and how they have unselfishly worked with him and helped him. But in retrospect, we all know that it is Jonathan who has helped them more…Jonathan has persevered through this season and worked hard to work through and overlook his obvious limitations. His presence and attitude is an inspiration to everyone and has not only helped me to be a better coach, but I think has helped me to be a better person."

Most of the time I look at these events and I am moved at the incredible blessing and inspiration that we receive from so many people. But I was able to see tonight what an inspiration Jonathan is to so many people. Who would have thought that this little guy could inspire a group of boys his age to unselfishly give up winning a game of basketball for winning the game of life by helping someone accomplish something important in their life. We praise God for the opportunities that God has given Jonathan minister to those around him, even to kids his own age. It is our prayer that God will use this experience in these guys’ lives in the years to come. Jonathan continues to do well in his drum lessons. Since his last lesson, we have seen him sit down on his own several times to play the drums, even after he has done his practicing. He seems to really be enjoying this new challenge and we are very glad. He is working on a learning a song that we have sung together as a family, so when he learns the song well, we will try it out in church. We are all looking forward to that. All the kids continue to progress with schoolwork. Jonathan has been working on multiplication tables for quite some time now, but every morning he faithfully sits down at his desk and pulls out his flashcards and goes over all his multiplication tables. It has been very good for him and he remembers more and more of them each day. Jonathan is still wearing his braces for about 5 hours most days during the week. I don’t know if it is doing much good, but I also think the real help lies in retraining his brain to use his legs and walk correctly. I was able to check on our insurance website and found this particular therapist that was recommended to us is on our insurance. I hope to be able to visit with her and find out what the options for us are there. Jonathan and Sarah’s choir got to sing in church on Sunday evening. They did a very good job. Jonathan really doesn’t like to sing “high” like all of the songs seem to be for him, but he sang beautifully with the choir and they did a great job. Mrs. Lori is not only his cranial therapist, but also his choir teacher and the kids really respond well to her. Mrs. Lori left yesterday for a mission trip to India, but Jonathan was able to see her for about 45 minutes before she left. Jonathan seems to benefit from the therapy she does with him, plus she faithfully prays over him and for his healing which is a wonderful added benefit. I’m not sure how to describe Jonathan’s sleeping this week. It has been okay, then it has been awful, and now it seems to be improving a little. Lamar was out of town one night last week, so I let him sleep in bed with me that night. Jonathan has always slept with us, from the time he was able to get out of bed and walk to our bed, until the night before he went to the hospital. I know that is an unusually old age to be sleeping with your parents, but that’s how it was. So I thought maybe he would sleep better if he slept in our bed again. It was not a good night, which I’m sure is a good thing, because we did not need to get into that habit again. Friday night he slept beside our bed on the floor like he does every Friday night, and it was a miserable night. A friend of mine suggested we try giving him Melatonin. So after consulting with my wonderful physician friend, Meghan, I purchased some on Saturday. They are only 1 milligram tablets and we started out by giving him 1 tablet Saturday night. Jonathan slept much better that night, but I’m not sure how much of it was the Melatonin or the fact that he was utterly exhausted. On Sunday night, we gave him 2 tablets. He didn’t sleep as well as I hoped he would, but I decided to keep trying it for a couple of days. Monday night, although he still woke up a number of times, the intensity of his crying was much less than it usually is. He was able to calm down more quickly and his crying was much less violent and severe when he did wake up. We have gotten up late every day this week, but Jonathan has been able to sleep from about 6 until 10 every morning without waking up. As much as I hate to start our day that late, we all desperately need some of that uninterrupted sleep whenever we can get it. Last night, we gave him 2 tablets again and as best I can remember, the last time I was in with him, the clock said somewhere in the 3 am range (I think). I woke him up at 10 am this morning. That’s the longest amount of time he has slept in months! Please continue to pray for him that this will continue to improve each night. Later, as Jonathan was on his way up the stairs to get ready for school, he lost his balance and fell half way down the stairs. It scared us all to death. Fortunately he only hurt his arm and his leg. He has a pretty good bruise on his right elbow, his right knee and a knot right below his knee. Pray that this will heal quickly and not cause him much pain. We begin therapeutic riding in one week, Tuesday, March 14 at 1 pm. Jonathan is very excited about this and we are thanking God for providing this opportunity for him.
Thank you for your faithful prayers for Jonathan and our family. We continue to see God work and we continue to seek Him for the needs we have. Please continue to pray for his sleeping. Pray that God will heal that part of his brain and that this destructive sleep habit will change to one of peaceful rest for him. Thank you to all of you who faithfully read and share your suggestions with us. We try every suggestion you give us and we appreciate your love and concern for us. Please pray that we will have wisdom as we seek the best course of action for Jonathan’s ongoing therapy. I know what I want for him, but I’m not sure what the Lord wants for him right now. He has been faithful to guide us each step of the way. Pray that we will allow Him to continue to lead and not try to take things into our own hands and make His will happen the way we want it to. Please pray for his new therapist Linda and for his new horse Sterling. Pray that God will pave the way even now for this relationship. God has been faithful to hand pick each person that has played a vital role in Jonathan’s recovery, and I am confident that Linda is God’s chosen person for this particular time. Continue to pray for the results of the Cushings test. We will be taking the collection tomorrow (Thursday), so pray specifically for Jonathan this day and for the test results to come back within normal range. Pray that we will not worry or fret over this, but that we will rest in God’s sovereign control over this issue in Jonathan’s life.
This time last year we were finding out that our stay at the OCH would last another 5 weeks instead of what we had asked God for, which was to go home. Jonathan had begun to ask when he was going home. It was one of the hardest issues of our timing versus God’s timing that we have ever experienced. And yet we have found God’s timing to always be perfect. There are things that we are still waiting on God to fulfill in this healing process. We know that His perfect will is for an appointed time and we continue to wait in faith, believing that it will not be late a single day. I found these Scriptures in my devotional today and will leave them with you tonight. We praise God for all that He has done and all the He has yet to do. We also praise God for each of you, our precious friends and faithful prayer warriors. May God richly bless each of you this week.

1 Chronicles 17:23-25 And now, O LORD, let the word that Thou hast spoken concerning Thy servant and concerning his house, be established forever, and do as Thou hast spoken. 24 "And let Thy name be established and magnified forever, saying, 'The LORD of hosts is the God of Israel, even a God to Israel; and the house of David Thy servant is established before Thee.' 25 "For Thou, O my God, hast revealed to Thy servant that Thou wilt build for him a house; therefore Thy servant hath found courage to pray before Thee. 26 "And now, O LORD, Thou art God, and hast promised this good thing to Thy servant. 27 "And now it hath pleased Thee to bless the house of Thy servant, that it may continue forever before Thee; for Thou, O LORD, hast blessed, and it is blessed forever."

Wednesday, March 1, 2006

God continues to faithfully provide and guide us through each day. We have dealt with a wide variety of things this week: good news, not so good news, some things changing, some still unchanged, some blessings, some precious new memories, and some moments of hope for the future. To begin, last Wednesday, we got a call from the endocrinologist saying that the results were back from Jonathan’s Cushings test. The levels were “mildly elevated” and they wanted us to do the test again. I asked how elevated they were: the normal levels are 1-30; Jonathan’s was 34.5. If this test does not come back within normal range, they will do another type of test which involves giving him a steroid and if that does not come back normal, he would go to the hospital for more tests. Needless to say, I was devastated. I went back and looked at the journal entry where I so boldly proclaimed the profound conclusion I had come to that because we believed that God had healed Jonathan, there was no way that he could have any of these issues that they were testing for. As a matter of fact, I don’t recall ever praying for this test result, or asking anyone to pray about it. As I searched my disturbed heart, I began to wonder; did I presume upon this miracle of healing from God, just expecting Him to deliver yet again without feeling the need to come before Him and cry out to Him regarding this new obstacle in the journey? Did I exchange my faith and belief in this incredible gift for an attitude of arrogance, acting as though just because I believe this is what God is going to do? I struggled with these thoughts for some time and brought this matter before the Lord asking Him to cleanse me of anything that might stand in His way of accomplishing all that He wants to in Jonathan’s life and in my own life. Later on I read this from my Streams in the Desert devotional:

"If thou canst believe, all things are possible. to him that believeth" (Mark 9:23).
Seldom have we heard a better definition of faith than was given once in one of our meetings, by a dear old colored woman, as she answered the question of a young man how to take the Lord for needed help.
In her characteristic way, pointing her finger toward him, she said with great emphasis: "You've just got to believe that He's done it and it's done." The great danger with most of us is that, after we ask Him to do it, we do not believe that it is done, but we keep on helping Him, and getting others to help Him; and waiting to see how He is going to do it.
Faith adds its "Amen" to God's "Yea," and then takes its hands off, and leaves God to finish His work. Its language is, "Commit thy way unto the Lord, trust also in him; and he worketh.' --Days of Heaven upon Earth

I still fully believe that God has healed Jonathan and that he does not have Cushings, but I have agreed to redo the test. This time however, I will be mindful to pray for this outcome and ask for your prayers as well, just as we have always done before. The last thing I want to do is to ever take God’s precious gift for granted. I hope that you will join us in praying for the results of this test, even though we have not yet taken the collection. The Lord has blessed me by allowing me to get to know a wonderful young lady in Portland, ME who has prayed for Jonathan and followed his progress through this entire experience. She is studying to become a physician and she is also a Type 1 diabetic. She has been a wonderful source of information and encouragement to me over these last couple of weeks. I was able to ask her about Cushings and she was able to share with me in a way that I could understand what I needed to know. The reason we have not taken the collection for the test yet is because Jonathan started getting a cold on Wednesday last week, and all three of the kids had colds over the weekend. After consulting with my physician friend, Meghan, we decided to wait until he was well before collecting for the test. All of the kids are much better this week, so I am hoping to get this collection done in the next few days. Our schedule is starting to slow down some now that Upward Basketball is coming to a close. Last Saturday, Jonathan played a great game. His coach put him in four full periods. Jonathan got to do an entire play – he brought the ball down the court and dribbled right up to the basket and made the points for his team. It was great! He made two baskets for his team this week and did a great job on defense and offense. Needless to say, he was very tired and sweaty after that game! To show you how much he has improved in just two months of basketball; when Jonathan first started playing, he had to really push to get the ball into the basket. At the game on Saturday, he was shooting the ball completely over the basket! He has come a long way and it is such a great thing to watch. Almost all of our extended family was on hand to watch he and Sarah play their games this week, and after the games, we grilled hamburgers and hot dogs at our house for dinner. It was a fun day. On Sunday evening, our church had the privilege of having the Chapel Choir (High school choir) from First Baptist Church, Dallas come and sing for us. Uncle Timmy plays the drums and does percussion for them, so Jonathan was excited about getting to hang out with him while he was playing. During their practice, Uncle Timmy let Jonathan play the egg shaker, the tambourine, and make the chimes sound as the choir sang through their music. Jonathan did very well at keeping the beat. He sounded so good, if you weren’t watching him play those instruments, you would never have known it was him. He was so proud and felt so important just getting to do that. The choir director, Grady Chism, acknowledged Jonathan and the choir applauded him, which made him even more proud. All during the service, when he would hear Uncle Timmy playing those instruments, he would look at me and say, “That’s gonna be me someday.” The choir did a phenomenal job and it brought back many wonderful memories of the days when Lamar and I had the opportunity to be part of that great choir. Jonathan had basketball practice again on Monday evening. This was the last practice of the season. They played a fun game of basketball toward the end of the hour. Coach Ben had Jonathan on his team and helped him get in the middle of the game and really play. He had a great time and never stopped playing the entire time. This has been such a great experience for Jonathan all the way around. Another thing that happened on Monday was that we received an email verifying Jonathan’s lessons at SpiritHorse Therapeutic Riding Center, starting on March 14, every Tuesday at 1 pm. We also found out that his therapist’s name is Linda and his horse’s name is Sterling. There is a picture of Sterling on their website if you would like to see him. Go to , click on OUR HORSES and scroll down until you find Sterling. We are very excited about starting this and hope it will help with strength and flexibility in his leg and hips. On Tuesday we went to see Mrs. Lori for our cranial therapy. She commented that his walking was rougher that day as he came walking in. As we talked, she began working with him on his walking. She would just put her hands on certain places (his hips, sides of his legs, in the middle of his stomach, and on his shoulders) and he would immediately adjust his posture and walk better. Jonathan has a tendency to lean back and tilt his head back to help balance himself. He also waddles instead of walks straight. Lori talked about retraining the brain to remember what the right way is to do these things instead of the way he has been doing them. He responded very quickly and very well to everything she did and she worked on his walking the entire hour. She said he has potential to make great progress if we can approach his therapy from a neurological standpoint. I completely agree with her assessment. She has given me the name of someone to check into once our insurance is effective, but she has also offered to work with him in this area as well if we are unable to use anyone else. Mrs. Lori is truly God’s provision for Jonathan right now and we are grateful for her willingness to be used by God and to give so sacrificially. Jonathan continues to struggle with his sleeping, although it seems to be changing in several ways. The pattern of sleeping pretty well without waking from about 4:30-8:00 has changed to where he cries 1-2 times an hour until it is time to get up and then usually cries when he wakes up. But now we may have a few hours in the middle of the night where he will sleep for about an hour or more without waking. He use to nap during the day without crying, but over the last week, he has begun to cry at least once or twice during his nap time. I don’t know if these changes are good or bad, but they are changes nonetheless. It is still very frustrating to deal with, but because there are a few hours when he sleeps pretty well, it does not seem as bad as it has been. But we will continue to pray about this, believing that the healing will come, and hope that you will continue to pray with us.
Thank you for your constant faithfulness to pray for us. Please continue to specifically pray for Jonathan’s sleeping issues. Pray for healing to come quickly, for peace when he sleeps and that his brain will be able to shut down and allow him to rest. Please pray that we will be able to get the right therapy for Jonathan, one that focuses on the neurological aspect that will help him improve even more in his walking. Pray that we will have wisdom as we seek our options and that we will know the Lord’s voice behind us telling us which way to go. Please begin now to pray for the Cushings test, even though we have not even done it yet. Pray that God will bring healing to this issue as well and that the levels will come back within normal range. Praise God with us for the wonderful benefits that Upward Basketball has brought to Jonathan and for the blessing of securing his therapy riding lessons that will begin soon. Please begin now to pray for Linda, his therapist, that she will once again be God’s chosen person for Jonathan at this time. And pray for Sterling, that he will be the perfect companion for Jonathan. Please continue to pray for Jonathan’s complete healing of his brain, his vision and his diabetes. This time last year, we were praising God for the daily improvement and miracles that God was bringing to Jonathan’s life as he was recovering in the OCH. Today, we still see so many miracles in Jonathan’s life and we celebrate these and give all the glory to the One who is in control of his life. Thank you for your part in Jonathan’s miracle. May God bless you this week.

2 Timothy 1:12 For this reason I also suffer these things, but I am not ashamed; for I know whom I have believed and I am convinced that He is able to guard what I have entrusted to Him until that day.

PS: Before I had a chance to send this, I got a call back about Jonathan's A1C results - 6.4. This is improvement from the last one which was 8.6. I believe the goal is between 5-6, so we are doing pretty well. Praise the Lord!