2-17-05
9:35 am Prayer Need: Jonathan pulled his feeding tube out last night. The doctor's even now are deciding whether to put it back in or to leave it out and see how he does. He needs to drink 50 ounces of water by mouth per day. Please pray that the tube will stay out and he will be able to drink the amount of fluid that he needs each day.
Psalm 51:15 O Lord, open my lips, That my mouth may declare Thy praise.
JONATHAN HAS SPOKEN
His first words were, "I WANT SOME MILK. He has drank 2 containers of chocolate milk and wants more. HALLELUJAH! OUR GOD IS AWESOME.
PRAISE GOD FROM WHOM ALL BLESSINGS FLOW
PRAISE HIM ALL CREATURES HERE BELOW
PRAISE HIM ABOVE YE HEAVENLY HOSTS
PRAISE FATHER SON AND HOLY GHOST.
AMEN AND AMEN!!!!!!!!!
Seven weeks ago today was the last time we heard our precious Jonathan utter a word. At best, we could barely understand him then because he was so sick. "I want some milk" will forever ring in our memories as the most beautiful words spoken - Jonathan's first words since December 30, 2004. He would also say "I want some more milk" and "I want some chocolate milk". Praise the Lord! It was an incredible moment. What a blessing to hear his voice again. Lots of things happened today, so let me back up to the beginning of the day. I walked in this morning to find out that Jonathan had pulled the feeding tube out of his nose in the middle of the night. The doctor said they may have to put it back in so that he can get all the fluids he needs (50 oz a day). They also changed the only 2 tube feedings he had left (3 pm, 10 pm) to snacks. I told them we wanted to try to give the fluids to him by mouth before putting the tube back in. So we determined that over 12 hours, we needed to give him at least 4 oz of fluid an hour. So that was our goal for today. Therapy went well. During speech, he ate 2 Cheeto puffs, some cheese and part of a graham cracker and did great. They are ordering him a mechanical, soft, ground tray in the morning to see how he will do. He should have no problems with it at all. Jonathan showed the neuro-psychologist that he also remembers his number 0-9 to go along with colors and shapes. After that we went to the play room for a while and watched Jonathan color on a Magna Doodle board, among other things. We went back to the room and I gave him 4 oz of chocolate milk, which he drank very quickly. After I put it back in the refrigerator, Uncle Chris and I were sitting on his bed talking to him and watching him desperately trying to say words. We continued to encourage him until he said "Milk." I asked him if he was telling me he wanted some milk and he said, "I want some milk." We cheered! Guess what Jonathan got? The rest of the carton and another whole carton too! I think he said "I want some milk" at least 100 times and we just kept calling all the family and holding the phone to his mouth. The doctor told us that chewing and talking usually happen together. Later on in the evening, he said "Bye" to his grandparents too. He continued to try to say more things during the evening, like Dad, Mom, Hi and Bye most of them were whispers but words none the less. We are looking forward to hearing every word he wants to say to us. Jonathan gives great hugs and tonight for the first time in 7 weeks, Dad got a hug from his son. He could hardly contain himself as Jonathan wrapped his arm around his daddy's neck and squeezed.
Psalm 115:18 - 116:1 But as for us, we will bless the LORD From this time forth and forever. Praise the LORD! We hope you will join us in praising God for yet another awesome miracle in the life of our sweet boy. Pray for Jonathan as he works through this new phase of his recovery and continue to pray for healing and peace within his little mind. Pray that we can maintain the fluids he needs by mouth so that there will be no more feeding tube. Pray for movement in his left arm and both legs and strength to hold up his head and to support himself. Thank you for praying and believing with us! This is truly one of the most treasured moments of our lives. God is so good!
Our weather here was so cold over the weekend. We stayed in all day Saturday except for going to Jonathan’s basketball game. Jonathan’s team tied their game this week. They all played awesome! Jonathan got to play a couple of times during the first half and he made one basket for his team. One time the guys were running their play while he was in there, and although the “J play” was not called, when they got to where Jonathan was standing, they just gave him the ball and let him shoot it. His teammates are the BEST! Jonathan also got to play and entire period during the second half. He did a lot of defense during that period. He tends to forget things easily, and each time he went to the wrong place on the court, his teammates would adjust and keep playing. Jonathan got the Best Defense star for this game. Because the weather was threatening to get bad, they canceled Sarah’s game so we got to go home early. We have enjoyed watching a lot of the Olympics this past week, so we sat around and did that much of the weekend. It was a great time to just relax at home, something we haven’t had much time for this year. We were able to make it to church on Sunday. After choir in the evening, Jonathan came to tell me he was going to RAs with his friend Zachary. He came down to the sanctuary from his choir class, up on the platform where I was practicing, told me what he was going to do, walked back down the steps by himself (without holding on to anything) and out the door to RAs with Zachary, all by himself. I just love it when he does that! After church, he told me that Zachary was going to come over on Monday and play for the afternoon since he was off school. Zachary and his sister both came over for a little while on Monday afternoon, and Jonathan enjoyed being the one to have a friend over for once. We are grateful for friends like Meredith and Zachary who have been such a great encouragement and support for Jonathan. We went back to see Mrs. Lori today and she continues to work with Jonathan through her cranial sacral therapy. We are seeing some changes and are trying to continue to monitor those changes in relation to the things she is doing with him. I also received an email from the SpiritHorse Therapeutic Riding Center, asking for our preferred times for lessons for Jonathan. Hopefully we will find out soon when we will be able to have his lesson. It will start out as a 30 minute lesson and could become an hour, which I think would be great. Jonathan has faithfully worn his braces almost every day this week. We upped the time to 5 hours each day, and he has done a good job not complaining about wearing them. As I watched him walk today, I told him I thought his feet looked straighter than I had seen them before, so hopefully, our wearing them is having the affect it needs to have on straightening his feet.
As I read back over the journal from this time last year, here is what I read:
Although today was a tough day for all of us, God continues to faithfully give us little blessings to remind us that He is in control of Jonathan's life. Jonathan cried pretty much all night long. We had a few 20 minute periods of sleep, but for the most part, he cried from 10 pm until 9 am. I can't even express to you how tough it is to watch him struggle through those periods of agitation. Knowing that the agitation and sleep issues he is having are very normal does not make it any easier to deal with. It is heart wrenching to be unable to do anything to help him. You just pray and cry with him. The doctor gave him a new medicine this morning to help calm him down and it knocked him out for most of the day. He only got one of his therapy sessions, but he desperately needed the rest. They are going to give him this medicine again tonight as well. We had our Cares Conference again today and talked about the sleep issues as well as the rise in his blood sugar. He is eating incredibly well and continues to progress to new levels of eating. He is now on the chopped tray and hopefully will be on a regular tray by next week. We can't help but praise the Lord each time we see him eat. What a blessing. We have been officially told that Jonathan is out of the coma. He is interacting with his environment which means he is no longer in a coma. He is making great progress in his therapy and we are going to continue on the original plan set forth for him.
God has been good to give us so many good days since we have been at Our Children's House. Please continue to earnestly pray for Jonathan's rest at night. This is so important for him. Pray for continued progress in his therapy and strength in his body. Pray that we will not get discouraged when we have tough days like this. Pray for our rest and strength as well as Jonathan's. God's way, His timing and His will are always perfect. Pray that we will wait on Him.
I will never forget this night. I remember how discouraged I was as I stayed with him that night and watched him cry the entire night. Oddly enough, we are at that place once again, only at home instead of in the hospital. Last Tuesday night, Jonathan had a very good night of sleep. He only got up a couple of times. Each time we have a good night, I wonder if it is going to be our turning point. Unfortunately, it was short lived. Since then, we have struggled every night. This continues to be our greatest area of need right now. I am always open to everyone’s suggestions, and I try every one that I am given. We have slept with the lights on and with them off, with music on and with music off, with things and without things, in his bed and in our room. We have prayed, rebuked Satan, quoted Scripture, stood on the promises and many of you pray diligently daily for this specific need. And yet, the Lord remains silent on His answer, and our efforts remain futile to this point. This is quite an emotional rollercoaster for me, mainly because I am completely exhausted most of the time. I am easily discouraged and fight feelings of failure and despair day and night. Thanks to Aunt Keby’s help over the weekend, I was able to catch up a little on my rest, but it is slowly being depleted again. There were times over these last few days that many of you have reminded me of your faithfulness to pray for us. I can’t tell you how that encourages me. It is sometimes the only thing that keeps me from complete despair. Although Jonathan doesn’t seem to be adversely affected during the day, it does affect our schooling and our daily activities, because we start the day late and stay behind on things all day long. I know that God is in control. We have been in this place of impossible circumstances many times in this experience, and God has been faithful to accomplish what no one else could – for His honor and glory. He who began this good work will be faithful to complete it. Please pray that we will surrender to His will in this situation and that He would reveal His will to us very clearly so that we can discern what path He wants us to pursue where this is concerned. Continue to pray specifically that Jonathan’s mind would be at peace and rest each night. Please pray that God’s grace will sustain me and give me rest as I deal with Jonathan each night. Pray that I will be able to stand firm against the attacks of Satan in the midst of this difficult issue. I am claiming this Scripture for Jonathan: Psalm 4:8 - In peace I will both lie down and sleep, For Thou alone, O LORD, dost make me to dwell in safety.
Once again, thank you so much for your continued prayers for us. As I have already said, we could not make it without your support and prayers. Thank you for specifically praying for Jonathan’s greatest need of restful sleep. Please pray for health for our family as all the kids seem to have a touch of a cold right now. Please pray that Jonathan will continue to faithfully wear his braces and that the Lord will reward his faithfulness with beautiful, straight feet. Pray that he will continue to gain strength in his hips, legs and ankles. He seems to be getting stronger and stronger each day. Pray that he will be able to finish out a wonderful basketball experience. His running and stamina have improved so much and we are overjoyed with his progress. Pray that God will orchestrate the details of his therapeutic riding lessons and that He will again hand pick Jonathan’s therapist for this part of his recovery. Pray that we will have wisdom to discern God’s will for the best way to help Jonathan and that we would know exactly what He wants us to pursue each step of the way. I continue to be drawn to these Scriptures that we read in church last Sunday, so I will leave them with you tonight. How grateful I am to know that our great God is in control of every detail of our lives. We love you all.
Ephesians 1:18-23 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. These are in accordance with the working of the strength of His might 20 which He brought about in Christ, when He raised Him from the dead, and seated Him at His right hand in the heavenly places, 21 far above all rule and authority and power and dominion, and every name that is named, not only in this age, but also in the one to come.
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