Tuesday, May 16, 2006

I know this update is well overdue and I hope you will forgive me for the delay. We have had a very full, busy week and there is much to share with you. We should be finishing up school this week. Last week was a rough week as far as school goes. Everyone seemed to have a difficult time, especially with math. The fact that we are in the last few days of school probably has something to do with our issues! Jonathan seemed to be struggling a lot remembering things that he has already done in math. So we had to back track a little and start going over division flash cards each day to help him keep up with what he has already learned. After we finish this week, we will take a couple of weeks off for a break before we start on a new summer schedule where we will try to work more on his math and grammar to get more of his work finished by the time school starts again in August. This will be the first time we have ever schooled through the summer, although we only plan to spend about an hour each day on schoolwork. So I am hoping we will make good progress during the summer. We had a great evening on Wednesday celebrating the accomplishments that each of the kids made in Awana this year. All of them finished their books and all of them received a trophy for their accomplishment. On Thursday, we spent the day at Six Flags for Home School Family Day. Jonathan never ceases to amaze us. To give you an idea of what Jonathan use to be like (before his illness) when we went to Six Flags; we would have to drag him on the simplest of rides and every time he got off the ride you would hear him say, “I’m never getting on that ride again!” Jonathan has changed quite a bit since his illness. I have told him many, many times that I think he is the bravest kid I know. This year, Jonathan rode several rides that he would never in a million years have ever gotten on before. For those of you who know the rides at Six Flags, he rode the Bobsled, Conquestador, Superman (which is very high), Run Away Mountain (which is totally in the dark), the Mine Train, and Roaring Rapids and Splash Waterfalls (which are both extremely wet). We also rode some of the other fun rides that we always ride like the Log Ride and the Antique Cars. Jonathan also took on the challenge of trying to ring the bell by using the sledge hammer. It was pretty difficult and took him seven or eight tries, but he did ring the bell and got a stuffed animal for it. We took the wheel chair with us, but Jonathan stood in several long lines and also did plenty of walking. We always have a great time at Six Flags, and this day was no different. We left a little early so we could watch Sarah play her last basketball game and then we ended the day by celebrating with her team at Braums eating ice cream. Jonathan surprised us yet again the next morning. He woke up sometime around 7:15 and I remember telling him to lie back down for a little while. Apparently he didn’t do that. He said he tried to wake me up, but I never woke up. So he went downstairs, checked his own blood sugar and got his own breakfast. After that he came back upstairs and got back in bed and went back to sleep until we woke up around 9:30. When he told me he did that I thought he was just not fully awake and must have dreamed that he had done that. However, I was shocked when I found out he knew what he was talking about and he had actually done everything he said he had done! I was very proud of him, but a little unnerved that he did all that without my knowing about it. He was smart enough not to draw up his insulin and give it to himself because he was not sure which one to use, although if he had known which one to use, I have no doubt he would have given himself his own insulin. That though kind of scared me. So we just set down some ground rules about that and are working on learning which insulin he gets at which time. We did decide that he can draw up his insulin, but he can’t give it unless Mom or Dad double checks it to make sure we don’t make any mistakes. I am so proud of his eagerness to take care of himself and to do things on his own. He is an awesome kid! On Saturday, Aunt Keby came over and we all went to the Denton Water Works and swam in the indoor pool for a couple of hours. Swimming is one of Jonathan’s favorite things to do. I think he asks every day when we get to start swimming. After swimming for a couple of hours, we went to dinner and after we got home, I got to open a Mother’s Day present from each of my kids. Remember last weekend when Jonathan spent the night away from home for the very first time? Well part of that plan included Aunt Keby taking the kids to have a picture made for me. I got three beautiful framed pictures of my three precious children for Mother’s Day. They took my breath away. I think I am truly the most blessed mother in the world and I am so thankful for these three blessings. Speaking of pictures, we hope you enjoyed the new page of pictures that we finally put on the website. It’s been so long since we put pictures up there, we actually had some from Halloween last year! Well we have already taken a ton more that I hope we can get up there to show you soon. I had a wonderful Mother’s Day this year. We got to spend some time with both of our Moms/Grandmas on Sunday, so that was a treat. I wanted to update over the weekend so that I could let you know that Jonathan was going for his diabetes checkup on Monday, but I knew that many of you would be praying whether you knew that or not. We went yesterday morning for his regular endocrine appointment. Despite the weary 2 ½ hour wait, everything went pretty well. Jonathan’s A1C was 8.6, which is up from the last visit. I was expecting it to be up because his blood sugars have been consistently up over the last month and a half. He also gained 5 pounds since the last visit. We are going to get back to taking the glucafauge and we had to raise his night time insulin again, to see if we can get his blood sugar back down to a more consistent normal level. I know the biggest thing that will help him is his diet and exercise. I also know that if I don’t take the lead with this, it will not happen. Sometimes I get so overwhelmed with the thought of how and what to do about this that I just don’t do anything. So I am going to be asking you to pray for me that I will be diligent and determined to work with Jonathan on this over the summer months and that God will be gracious to us and bless us with good results. I am thankful that no tests were discussed and that nothing extra was needed for this visit. I have had some growing concerns about staying with this group of doctors and I prayed that God would direct me to know whether to stay or leave based on yesterday’s visit. We decided to start seeing a different doctor in this network at a different location the next couple of times, so we are going to stay with Cooks for the time being. I hope that these concerns will change with the new doctor, but I know that the Lord will guide us to the right doctors for Jonathan. He has been faithful to do that throughout this entire journey. After our visit, we spent the rest of the day at Grandpa and Grandma Smith’s house. Today we had our cranial therapy and horse therapy. We are still making good progress with Mrs. Lori and we are so thankful that God has sent her to us. Horse therapy brought an unexpected change for us today. When we arrived, Mrs. Tammy told us that because Skip suffers from arthritis, they were going to restrict him to just being a walking horse. Since Jonathan likes to trot the horse, that means that we have to ride a different horse. We were a little sad about that because we have grown very attached to Skipper. But we got to know Daisy today. She is a bigger horse and she is absolutely beautiful. She is a white and brown Paint Horse, and she was wonderful to ride. Jonathan automatically thought to pick out a girl colored saddle pad instead of the usual blue one he always chose for Skip, and the girls went nuts with the brushes making sure she was the most beautifully groomed horse on the property for at least an hour. Because she is a bigger horse than Skip, Jonathan had to get use to her walk and trot and he seemed like he was much higher up than usual. He is still getting on and off the horse on his own, and he is standing up taller in the stirrups each week. He is learning to stand up and sit down as the horse is walking. He also struggled a little bit with the trotting today, but he will get use to Daisy very quickly. He seemed to love her instantly. We stopped off on our way out to pet Skip and give him a carrot. He walked right up to us and let us love on him, just like he knew we were there to see him. We are going to miss the Skipper, but we already love Daisy. We’ll try to get pictures out so you can see her, but if you can’t wait, you can go to their website: www.spirithorsetherapy.com , click on Our Horses and scroll down until you find Daisy. She is the next to the last horse at the bottom of the page. Jonathan is still struggling with his sleeping. Some nights are okay and some are worse. None of them are as bad as they use to be, but we are still definitely struggling with the issue. Last night he reminded me of those weeks of coming out of the coma when he would be agitate and cry so much as he turned his head from side to side. That is exactly what he was doing last night. It’s almost like he is still suffering from that agitation over a year later. Please continue to pray about this for Jonathan.
Wow! What a week this has been; so many things happening. We are glad that you continue to check on us, care about us and want to know what is going on. You mean more to us that you will ever know. We hope you will continue to pray for Jonathan and for our family. God is working in our lives. Sometimes it is through dealing with these difficult issues, such as the sleeping, his vision and his diabetes. Sometimes it is through our talks as a family. Sometimes it is through our therapy, and sometimes it is through special times together, like Mother’s Day. He is doing a work in all of our lives. One a Sunday night recently, our pastor asked us to stand up and share a praise for something the Lord had done. Jonathan stood up and said, “God is healing me, and I believe that.” I too believe that; we all do. The Lord has been dealing with me, causing me to ask myself, do I want Him to heal Jonathan so we can be done with this difficult situation in our lives, or am I willing to wait for His healing of Jonathan and grow in my relationship with Him in that process? I know that Jonathan is in God’s hands, so I am trying to focus on God’s desires for my life and the life of our family that we might miss if He were to heal Jonathan right now. We continue to pray and ask you to continue to pray earnestly for the things that we have specifically asked God to do in Jonathan’s life that I shared with you in the last update. Please pray for us as well that we will know God’s desires for our lives and that we will seek to know Him in a deeper way through this journey. Well, I promise not to wait so long before I update again. We love you faithful friends, and pray God’s most wonderful blessings on you this week.

Ephesians 1:18-19 - I pray that the eyes of your heart may be enlightened, so that you may know what is the hope of His calling, what are the riches of the glory of His inheritance in the saints, 19 and what is the surpassing greatness of His power toward us who believe.

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