Wednesday, August 31, 2005

Well we have had a great week with lots of wonderful things happening in our family. Last Thursday, we got to go to Hurricane Harbor with some of our Aunts and Uncles. This is the first time that Elizabeth, Sarah and Jonathan have ever been. I really didn't figure that there would be much that Jonathan could do and I thought he would probably get tired of it pretty quick. Just the opposite happened. Jonathan did a fabulous job and thoroughly enjoyed his day there. Jonathan is proud to say that he only went down a couple of slides in the kid’s area and he was able to ride about 3 of the big rides. Once again, this formerly cautious child had a great time on some pretty big, fast rides. It was so fun to see his excitement before we rode them and then to hear him say, “That was awesome!” every time we got to the end. He also floated around the lazy river quite a bit and played in the wave pool. We went out in the morning and he didn't start wearing down until about 5 pm. It was a very proud accomplishment for Jonathan. On Sunday, the Sanctuary Choir at our church presented the musical “Experiencing God.” Sarah and I had the opportunity to sing solos in this musical. As I reflected on the songs that Sarah and I got to share with the congregation, I realized that we both sang songs that testified to what God has done in our lives this year and our relationship with Him. Sarah sang, “You are my Abba, my heavenly Father, You know my tears and my smiles – You are my Abba, my heavenly Father, and I am my Abba’s child.” Our children know God not only as their Father through salvation, but as the only Father who could take care of them and heal them when no one else could do anything. Back in January of this year, we were able to go to church one Sunday while Jonathan was still very critically ill and in a coma. During the invitation of that service we sang “Have Thine Own Way”. Before we finished that song, our pastor had us sing that song with Jonathan in it. “Have thine own way Lord, have thine own way. You are the potter, he is the clay. Mold him and make him after Thy will, while he is waiting, yielded and still.” My heart and mind were flooded with many memories as I was able to sing that same song on Sunday. The next part of the song I sang is about giving our lives to the Potter’s Hand to take, to mold, to use, and to fill; to call us, guide us, lead us and walk beside us as we live each day of the life that God has given us. Jonathan is a constant reminder that our lives are held in the Father’s hand and that as we allow Him to have His will and way in our lives; He molds us and makes us to be just like Him. Jonathan is still doing a great job playing handbells, singing in the choir and going to his classes at church on his own. On Sunday afternoon, Jonathan actually went to handbells with his Sunday School teacher who came to our house and picked him and Sarah up, then went on to choir with Sarah, and did it all without my being there to help. So he is making progress with his independence a little bit every week. Jonathan is still doing a great job with his school work. He is writing, reading, spelling, adding and subtracting and he can even quote you the list of prepositions from his grammar book. Tuesday brought us a wonderful blessing. We were invited to attend the ground breaking ceremony for the expansion of Our Children’s House at Baylor in downtown Dallas, where Jonathan was inpatient for about 2 months. The CEO of Baylor shared Jonathan’s story, recognized him during the ceremony, and invited him and a number of other children to help by wearing the hats and turning the dirt. It was such a special time for Jonathan and our whole family. Everyone treated Jonathan like he was a celebrity and the huge smile on his face showed just how special he felt. We saw our therapist, doctors, nurses and techs again. We thank God for each one of those special people who cared for Jonathan and who were used by God to help bring about Jonathan’s healing. Today, Jonathan got his new camouflage braces before he had his therapy. He has really been looking forward to getting these. He even wore his camouflage shorts to match, his muscle shirt, his new sweat bands and he even had on his biker gloves, just to get his new braces! After he got his braces and had them adjusted, he went down to the gym and walked 10 minutes on the treadmill at 2 mph, which is the fastest he has ever walked on the treadmill. He did it without any problems. He did a few squats before going back upstairs to work in the office. His balance is continuing to improve, as is his stamina and endurance. We are praying that the braces will help to straighten his feet so that he doesn’t walk on the sides of them, as well as provide some stability for his ankles. Overall, we are pleased and thankful for all the progress that we continue to see in Jonathan each day. Please pray for Jonathan, that he will continue to make progress each day. Pray that we will see progress with the new braces. Pray that his feet will begin to straighten out and that he will be able to walk properly on his feet. Pray for increased strength in his ankles. He has begun to complain about his ankles hurting more recently, mostly after he has been up walking a lot. Pray for increased strength in his legs also. Pray that Jonathan will continue to do well in school. Pray for continued progress in his independence. Continue to pray for complete healing of his brain, his vision and his diabetes. Jonathan is doing pretty well with his bladder control at night. Pray that he will be able to conquer this soon. Also pray for his eating and weight to level out. Our family is going camping tomorrow through the weekend. Pray that we will have a safe, relaxing, enjoyable time together as a family. We love each of you and are grateful for your prayers and support. Have a wonderful holiday weekend.

Tuesday, August 23, 2005

The Lord continues to bless Jonathan and our entire family each and every day. Last week, Jonathan did as good a job at therapy as he always does. He worked very hard and continues to improve on his exercises. Ms. Heather always does lots of different things with Jonathan and he always leaves tired and very sweaty! On Wednesday, we made a trip to downtown Dallas to have the mold made for Jonathan’s braces. After we had that done, we stopped by Our Children’s House for a short visit. Jonathan seems to enjoy going back there to see his therapists, nurses and techs. He continues to amaze them all by his phenomenal progress and most of all by how much he talks. It is such a blessing to be able to go back and show so many people the awesome miracle of healing that the Lord has done in Jonathan. Right after Jonathan got out of the hospital and was able to go back to Sunday School, one of his memory verses was Mark 5:19 - Go home to your friends and tell them what great things the Lord has done for you. Every day, God gives us the opportunity to fulfill that Scripture. On Thursday we went swimming and on Friday, we got to go bowling with some other home school friends of ours. This was the first time that Jonathan has gone bowling this year. He was very excited about it and he did a very good job. He stood by and watched the other kids bowl, he could pick up his ball, walk to the lane and throw it down without any problem. It was so much fun to watch him play. He even got a spare one time and overall came in second place in his group. We actually spent the rest of the day on Friday buying a car. Our family has been looking and praying for some time for another car that would pull our camper better than the one we had before. Our other car would only allow us to go close by home and we had to pull the camper with that car and haul everything and everyone else in our other car. God provided the right one at a good price and we were able to purchase that on Friday. Jonathan loves cars so this was an exciting thing for him. We are thankful for the answered prayer. During the weeks that we have been praying for the car, we would tell the kids that God would let us know which car we needed. Many times, Jonathan would ask us, “Has God told you anything yet?” This is yet another opportunity for our family to see God work and answer our prayers. We stayed home on Saturday and went to church on Sunday. Jonathan continues to go to classes by himself and is doing an awesome job. On Sunday, he added a new class to his schedule – Handbells. He got to play handbells during Fine Arts camp and was very excited to get the letter that he was chosen to play on the team. He has one bell and the group learned to play “When the Saints Go Marching In.” I got to hear him play at the end of class and he was able to follow along and play at the right time almost every time. Everyone was very proud of him and he was very proud of himself. I always keep an eye on Jonathan when he walks to see if I notice anything new, good or bad. On Sunday, as we went from place to place at church, I noticed that Jonathan seemed to be walking very smoothly and very normal. I was very encouraged. Just a couple of weeks ago, I was concerned that we were seeing a little more hyperextension in his knees and I was fearful that we were regressing some. God has been very gracious to us in that He has never allowed us to regress in any way. We have always gone forward in this experience and we continue to move forward with His help. On Monday, we started school at our house. I felt completely unprepared to begin, but we just jumped in and got started. So far, after two days, we are doing very well. We are trying to settle into our school routine, which will still include therapy once a week. We are trying to still swim as much as we can these next couple of weeks before we have to give that up for the year. Swimming has been such a great thing for us this summer. Not only has it been fun, but it has been great therapy and exercise for Jonathan. We are so grateful for Mr. Brad who has let us use his pool as often as we wanted. We also started an exercise routine with Jonathan to do each day as part of our school routine. We made a list of all the things he does in therapy and will do them every other day of the week that he does not go to therapy. One of the hardest things for Jonathan is balancing with his feet close to each other in a straight line, kind of like he walking on a balance beam, but he is just standing still. When we practiced that on Monday, he was able to balance for at least 10 seconds on each foot! That is the best he has ever been able to do. We were very excited. Our very talented friend, Mr. Lyle, made Jonathan a balance board, just like the one at the therapy office, to use at home. Needless to say, Jonathan is not the only one in this family that is working on the balance board! Mom can be just as tough a therapist as the ladies at the OCH, but Jonathan works just as well at home as he does at the office (with maybe just a little more complaining, of which Mom conveniently ignores). Today we had therapy again. Jonathan worked very hard and continues to improve on many of his exercises. He is really improving on his balance, his squats, and walking on the balance beam. There is a balance board that has a game on the top of it. You have to balance correctly and get the ball to go around the maze into the middle to win. Jonathan has tried this before and got it half way to the finish. Today he tried it again and very skillfully balanced until he got the ball in the very center to win. Way to go Jonathan! We found out that Jonathan’s braces will be ready next Wednesday, so we will go have them fitted and have therapy next Wednesday. We are so thankful for all of God’s provisions in our lives.
Thank you for keeping up with Jonathan’s progress and for continuing to pray for him and our family. Please pray that we will really settle into a routine with school and exercising at home. Pray for a good attitude, for patience and peace for all of us as we begin a new school year. Even though there is so much to do, I can’t tell you how thankful I am to be at this place again. We missed this so much earlier this year. What a blessing it is to be home with our family. Continue to pray for strength in Jonathan’s legs, ankles and feet. Pray that as he progress in his exercise and mobility that it will help to control his weight. We are doing very well with the bed wetting alarm. Pray for continued success with that. Continue to pray for his complete healing of his brain, vision and diabetes. Pray that he will be able to handle all the new things he will learn this year in school. Pray for good health for our family. Continue to pray for God’s guidance and leading, for peace and protection for our family. We look forward each day to what God has in store for us and the great things that he is going to continue to do in Jonathan’s life and for us as a family. God bless each of you for your faithful prayers.

Tuesday, August 16, 2005

Let me share with you what has happened here these past few days. Last week, of course, we were thrilled to learn that the insurance would pay 100% of Jonathan's braces. We had therapy on Wednesday last week so that we could have the therapist that Jonathan will see while Mrs. Dana is on maternity leave. Before we went in the afternoon, we took a bike ride with the therapy bike in the morning. Jonathan gets better and better with that, but his feet still shake by the time he gets finished riding. When we went to therapy later in the afternoon, she worked him really hard and did a lot of different exercises with him. She worked with him for almost an hour instead of just 45 minutes. About halfway through his workout, this upper legs began to shake pretty badly. That concerned me a bit since I don't recall that ever happening before. He did an awesome job despite the shaking legs. Ms. Heather did a lot of different exercises with Jonathan including his regular exercises on the ball, jumping, squats, balance beam, balance board, steps up and down, walking backward, side to side, doing the grapevine step, and bouncing on the ball. He worked really hard. Because of the shaking in his legs, I was concerned that maybe we have regressed a little because we haven't been able to wear his braces. I also have begun to see a little more hyperextension in his legs that I would like to admit, so as soon as we got home on Wednesday, I called and made an appointment to get started on his braces. Unfortunately, our appointment to just get the mold done to make the braces is not until tomorrow (Wednesday) and it could take at least two weeks beyond that to get them made. After therapy, Jonathan and I went to visit a chiropractor to get an adjustment. Both of us really needed one for various reasons. For Jonathan, getting in alignment will help his legs to gain strength. For me, it will help me feel better and sleep better, which is something I have been struggling with for the last month. We both went three days in a row. Jonathan continues to grow stronger, and at times his feet seem a little straighter. I have felt better and been able to sleep better since the adjustment. We were suppose to go camping over the weekend, but had to cancel our trip, so we just stayed home and did things at home together. We had an uneventful weekend, but a good one. Jonathan continues to do well at church on his own. He went back to Sunday School on his own again and added going back to choir and CIA, a missions class that the children have on Sunday nights. He has done a good job of handling these changes on his own. We are very proud of how well he is doing. Yesterday, the kids and I went with our Aunt Keby and Uncle Tim to Six Flags. Aunt Keby was able to get free tickets, so we spent the day out there together. We had a great time. Jonathan is a very cautious child; he always has been. He loves to go to Six Flags, but usually hates all the rides. There were only a few rides that he could go on, but instead of fretting over riding them, he got on the rides and completely enjoyed every minute. He even rode a couple of the rides more than once. He was very proud of himself! We were very proud of him and enjoyed watching him enjoy himself as much as he did. We also began using the bed wetting alarm last night. For the last couple of weeks, he has been waking up on his own at least once during the night to use the bathroom. Last night, he was able to get up and go each time before the alarm went off and he woke up dry this morning. We continue to work around our house to get things in order so that we can start back to school in a week or so. We have therapy this afternoon and tomorrow we will go to have the mold done to make Jonathan's braces. Overall, we are blessed to be doing so well.
Please continue to pray for Jonathan. Pray that we will continue to have success as we use this bed wetting alarm. Pray that he will continued to gain strength in his legs and that we will be able to get his braces soon to help straighten his feet. Pray that we will be able to settle into a good routine for school and exercise at home and that Mom will be able to handle everything that goes along with all of that. Pray that we will be able to receive the information and tools to help make this school year successful for Jonathan. Continue to pray for Jonathan's complete healing of his brain, vision and diabetes. You can also continue to pray for our entire family as we wait for God's leading in some decisions our family is facing. Pray that we will feed on the Lord's faithfulness that we have experienced through Jonathan's illness, wait patiently for His leading and trust in Him with all of our hearts. Thank you so much for your faithfulness to pray for us. The power of your prayers are evident in our lives every day.

Wednesday, August 10, 2005

I just wanted to share a praise/answer to prayer with you about Jonathan. After following up on the issue of his braces, I was able to find out today that the insurance will pay 100% of the expense of the new braces! What a blessing! I also found out that the doctor signed off on the braces that our therapist says he needs. I don't know if there was any discussion about it or if he just signed off on what she said. Because we are not knowledgeable enough about what he needs and because we were given two different opinions about what he needs, we are a little concerned that he is getting exactly what he needs, which is an updated version of what he already has. However, despite our apprehension, we are trusting in the faithfulness of God that we have witnessed through this entire experience. God has never failed to provide for Jonathan and to give Jonathan exactly what he has needed all along the way. We have no reason to think that He will not continue to lead, guide and control this specific need for Jonathan as well. Thank you so much for your prayers. God continues to faithfully answer each prayer that we bring before Him. Please pray that we will be able to get the braces made very soon and be able to start using them as soon as possible. Also, please continue to pray for Jonathan and our entire family. There are many needs that still remain, and we continue to pray and wait with anticipation to see what great things our God will do for us. Psalm 37: - Commit thy way unto the Lord, trust also in Him; and He shall bring it to pass. Praise God from whom all blessings flow!

Monday, August 8, 2005

This has been a week of changes and accomplishments. It has been a busy week to say the least. Jonathan was able to go to Fine Arts Camp at church every evening last week with both of his sisters. He was able to play handbells, he made several different crafts, one of which was a tie-dye T-shirt to wear for the program Sunday evening, he learned 5 different hymns and some “rhythmic movement” to some of them, and best of all, he got small drama part that he was able perform on Sunday evening. He went every evening by himself and very proudly accomplished all this on his own, with a little assistance from Elizabeth and Sarah. One of the most special things was that Mrs. Ann made all sugar free snacks for all the kids just for him. It was a great week for Jonathan. We went swimming 3 days last week and Jonathan continues to improve in his swimming abilities as well as his endurance and stamina. We went to therapy on Tuesday and he worked up in the office. He worked very hard doing many different things. He did his exercises on the ball, worked on the balance beam and balance board, he did lunges, jumps, squats, stood on each foot and balanced and stood with his feet in front of each other and balanced. He worked very hard. On Wednesday, we went back to visit with a lady from the company that makes his braces. She and his therapist decided that Jonathan needs another pair of braces like the ones he has outgrown. When we went to see Dr. McDonald at OCH last month, he suggested something different. Neither of them have talked about it with each other, and we are still waiting to find out what the insurance will cover. We have expressed our desire for Jonathan to have the braces that will be most beneficial to him, which ever ones that may be. I made some follow up phone calls today with the braces company, the doctor’s office and therapist’s office to try to get this finalized before his therapist goes on maternity leave, only to find out that she had her baby last week and is already gone. We made the decision last week to drop therapy to once a week to try to cut down on our expenses. We are currently working at home every day to keep in shape and help Jonathan continue to progress since we are only going to be seen once a week. We cleaned out and rearranged Jonathan’s room last week and he has been sleeping in his room with no problems. I have been setting an alarm and getting up at least twice during the night to make him go to the bathroom. While this interrupts my sleep, it has allowed him to stay dry for more than a week. I have also spent some time trying to find out what help is available from the school system for his low vision and for physical therapy, even though we will continue to homeschool. So far, I haven’t gotten very far with anyone there, not because they are being unhelpful, but I think because no one has ever asked for these services without being enrolled in the system. So we will continue to pursue this and see what we can come up with. Even with all these obstacles, we continue to praise God for every accomplishment Jonathan makes. Every day we watch him go up and down stairs with more and more ease. We see him try more and more things on his own. We see his endurance and strength increase daily. On Sunday, Jonathan met another goal by going to Sunday School on his own for the first time since he got out of the hospital. On Sunday evening, we watched Jonathan ring handbells, sing, do motions to songs and share his drama part with as much drama and passion as he has ever had. Someone came up to Jonathan and told him that as they watched him, they couldn’t help but think of all the things that we were told would never happen. And look how great our God is! Jonathan continues to be very conversational and shares with people often that he wants to be a missionary preacher when he grows up. He continues to be spiritually sensitive and talks often about God, His power, how awesome He is and how He is going to answer the prayers we have been praying about the things that we need. While it is easy to get weighed down by the issues we are facing in our family right now, God has given us, in Jonathan, a constant, living reminder of His power to know our needs, hear our prayers, heal, deliver, provide and lead us in His good, acceptable and perfect will for our family.
There are several things you can pray for this week for Jonathan. Most importantly at the moment, please pray about his braces. He needs a new pair and simply can’t wear the pair he has because he has completely outgrown them and they are of no benefit to him. Please pray that we will get the kind he needs that will benefit him the greatest, and that the insurance will pay for the new pair. Pray that Jonathan will continue to progress in balance, mobility and endurance and that he will continue to gain strength in his legs, ankles and feet. Pray that we will be diligent to work very hard at home since we are only going to therapy once a week. Pray that we will be able to receive the tools and services available to assist Jonathan in his therapy and with his vision, whether that be from the school system or some other avenue. Pray that Jonathan will be able to control his bladder himself during the night soon. Pray that he will be able to become more independent as he continues to work at doing things on his own. Pray for him and his sisters as they begin school next week. Pray that Mom will be able to handle the homeschooling and that this will be a special time for all of us as we resume this part of our life. Please pray for our entire family as we seem to be dealing with so many important issues right now. Please pray for wisdom, guidance and discernment as we make decisions. Please pray that we will remain faithful to trust the Lord with all our hearts and not lean on our own understanding. We know that God faithfully keep His promise to make our path straight as we acknowledge Him in all that we do, and that He will provide for all our needs as we seek Him and His will first. Thank you for your continued prayers for us. May God bless each of you for your faithfulness.

Monday, August 1, 2005

It is hard to believe that it is already August. We have been out of the hospital almost 4 months now and we are so blessed by the progress that Jonathan has made during this time. He continues to improve every day. I don’t think I have written in a week, so let me update you. Last Tuesday, Sarah had a friend over all day, so we went swimming again. Jonathan did a great job of swimming. He absolutely loves to swim and works very hard without even knowing it. Wednesday was a pretty low key day. It rained here so we stayed home all day, which we haven’t had the opportunity to do for a while. On Thursday, Dad took Jonathan to therapy and watched him work out in the gym. Jonathan beat his treadmill record by walking 25 minutes and increasing the speed to 1.8 for the last 10 minutes or so. He also did his side steps for 2 minutes on each side and walked backward for 3-4 minutes. He also did his squats and Dad was very proud of him. On Friday, we were up and out of the house by 8 am on our way to Cooks Children’s Hospital in Ft. Worth for our new endocrinology appointment. It took us an hour to get there, but we were blessed by everyone we had to deal with there. The endocrinologist at Cooks do things differently than Children’s so we ended up spending 3 hours talking to different people about Jonathan’s diabetes management. We talked with one nurse practitioner about changing his doses from set doses to figuring them on a unit to carb ratio, which we feel we are ready to do. After talking to him a while about all that Jonathan has gone through, we felt like we were visiting with another believer. That was great. The next nurse practitioner we talked with shared with us that she was a Christian and she really affirmed Jonathan and the plan that God has for his life. That was very cool. There is one test called the A1C that he has to take every time he goes. The first time we went for a clinic visit, they did it in the office with just a finger stick. We found out that our insurance does not pay for the one in the office, so we had to go to the lab and have blood taken. This is the first time that Jonathan has ever had to do that. As soon as he was aware of what he was about to have to do, he instantly became fearful. Jonathan was so blessed when he was in the hospital to have all his IVs out and all of the major hurtful things that happen to you when you are in the hospital, they all happened to him while he was in the coma, so he does not recall any of them. What an awesome blessing from God! His diabetes management consists of a small drop of blood from his finger and a very small thin needle shot that does not hurt. So taking blood was the first major thing he has had to deal with. He was very brave and walked in the lab room without any objection. The nurse began looking for his vein and had a hard time finding one because his arms are so much bigger now. At that point, I began to worry that it would take more than one try, that it would be painful and that he would have a horrible experience. So I had him look at me and I basically talked his head off until she was finished, and he was completely unaware that she had done anything! Praise the Lord! I can’t tell you how proud of him I was. After our visit was finally over, we went to Chuck E. Cheese for lunch with Grandma Smith, Aunt Susan and her kids. Jonathan was on his feet for a pretty long time, but he never complained about being tired or needing to sit down. We spent the rest of the day at Grandma and Grandpa Smith’s house. Later that evening, we walked across the street to visit one of the Grandma and Grandpa Smith’s neighbors, Mrs. Bonnie. We visited with her for a little bit before Jonathan decided to dominate the conversation. I think he talked to her for about 30 minutes straight! He was extremely conversational, which is something we have been begun to see change in him recently. He showed her how he could get down on the floor and get up again. He told her he would be happy to come to her church and preach for her. He told her he was going to be a missionary and preach the gospel and that all of his family was going to come with him. It was such a joy for all of us to watch him share so much with Mrs. Bonnie. On Saturday, we got our whole family back. Elizabeth came home from her mission trip and we got to spend the rest of the day together. We had a great day at church on Sunday as well. Jonathan continues to interact with people more and more with each passing day. Last night, we sat for a long time and listened to Jonathan preach to us about his life, what God wants to do with him when he gets older, how he wants to preach, how he know that God has healed him and is healing him every day. We just sat and listened to him talk on and on. We are so blessed. This week, every evening, the kids will be going to Fine Arts camp which is a camp where they will learn music, art, drama, handbells and who knows what else. Sarah and Jonathan will be going and Elizabeth will be going to help Jonathan again. Hopefully, this will help prepare him for Sunday, which is promotion Sunday, when he will begin going to his classes on his own.
Please continue to pray for Jonathan this week. He is doing so well! We are so thankful for his progress. Continue to pray for strength in his legs, ankles and feet. Pray for increased endurance and stamina. We have seen and increase in his endurance over this last week. Pray for him as he goes to Fine Arts Camp this week and as he prepares for the new adventure of going back to classes on his own this weekend. Continue to pray for complete healing of his diabetes, vision and his brain. He shared with us that he knows that God is going to heal him and he prays about that every night. Pray that God will straighten out his feet, or provide the braces that he needs to help with that. I would ask you to pray for Lamar and I. We are facing some difficult decision in several areas of our family, and we need wisdom and provision from God. We are praying, believing that the same God who heard our cries for Jonathan and delivered healing to him, will hear our cries again and bring deliverance and provision for the needs facing our family. Please pray for Elizabeth and Sarah as well. Pray for protection for them and pray that we will be as sensitive to them and their needs as we are to Jonathan. This has been a very difficult year for them. 2 Chronicles 20 is an incredible story of a people in need, and of God’s provision and victory in their lives. We are claiming this promise from God for our family. Thank you for interceding for our family.

“You will not need to fight this battle. Position yourselves, stand still and see the salvation of the Lord, who is with you…Do not fear or be dismayed…for the Lord is with you.” – 2 Chronicles 20:17