Well, everyone IS mostly the same since my last post. We’re still experiencing Oklahoma’s up and down spring. 70 one day, 45 the next. We had a chance last week to drive to a lake near our house and a couple of parks. The weather was gorgeous, if not a little windy! 😊 Joyanna seemed to enjoy being out. Ethan is always looking for a new park to play in.
Joyanna is the same, still experiencing some increased tone in some muscles though she has had enough strength to hold her head up a few times for me in the last few days. We may be in the rollercoaster season for her, where she’ll do better for a few weeks then worse. We’ll see. She is still very sleepy in the morning so I am experimenting with moving her morning medicines to early morning (4 am) to allow her day to gain a better regular pattern, more consistent with school and everyone else’s routine. I just started this morning and she was awake for the morning. She is napping now while receiving her infusion. We’ll see what happens over the next few days as I try it out. (We’ll actually see if I can manage to wake up even with an alarm at 4 am each morning 😉.) Philip has had some days of agitation but is much calmer overall with the medication changes they have made. The doctors are continuing to fine tune that new medicine to get it at its best level. We are excited that hopefully the end of flu precautions is close. Then I can take Ethan with me to see Philip. Other family members and friends with younger children will also be able to see him a little easier. It’s not easy to ask for childcare for yet another time each week. I have many here who are willing to help but everyone knows that you hate to ask over and over again. Besides, Ethan wants to see Philip again too. He should get to see him this weekend as my nieces and nephew are in town and we are reserving a family room to bring Philip out of his unit so they can see him. Soon, he should be able to see him weekly. Ben has a busy week this week at the college. It’s College Days which is a time each year when prospective students get to come on campus, attend classes, hear preaching, etc. My husband does a lot of the planning for it so he is heavily involved. Joyanna returns to school on Monday but the college’s spring break starts Tuesday. Ben has a long weekend on Easter weekend because of the break. He will probably be working to plant the garden during those days off. We may scale back our garden this year because of our vacation plans in July but we’ll see how it turns out. Either way, it will be good to get back into that time of year. I’m sure Ethan will learn so much this year just getting out in the back yard and working with his daddy. With Easter close at hand, I hope you are seriously considering the death, burial and resurrection of our Lord. He payed a great debt for us that we will never be able to repay. His resurrection gives us hope and power for every day living. I’ll never forget (over several months) when the Lord taught me that His resurrection power was available to me every day. That’s the greatest power in the universe…of all time. And it’s part of the gift God gives to me with my salvation. Power to submit to God’s will and carry out God’s plans for me. AMAZING! Rest in that power! Paul says it this way in Philippians 3: Phil 3:7-10 But what things were gain to me, those I counted loss for Christ. Yea doubtless, and I count all things but loss for the excellency of the knowledge of Christ Jesus my Lord: for whom I have suffered the loss of all things, and do count them but dung, that I may win Christ, And be found in him, not having mine own righteousness, which is of the law, but that which is through the faith of Christ, the righteousness which is of God by faith: That I may know him, and the power of his resurrection, and the fellowship of his sufferings, being made conformable unto his death; It seems though that we can’t really know the power of His resurrection without also knowing the fellowship of His sufferings and conforming to His death (that death for us not being physical but dying to our selfish way of thinking.) Once I look at it that way, it becomes obvious that we must have His power to do the other two. We certainly can’t face suffering and death without His power to keep us. I serve a Risen Saviour! Well, lest I sound like I’m preaching 😉, I’ll say goodbye for now. Thanks for praying for our family! May God truly bless you. He Lives I serve a risen Savior He’s in the world today. I know that He is living, Whatever men may say. I see His hand of mercy; I hear His voice of cheer; And just the time I need Him He’s always near. He lives, He lives, Christ Jesus lives today! He walks with me and talks with me along life’s narrow way. He lives, He lives, salvation to impart! You ask me how I know He lives? He lives within my heart. In all the world around me I see His loving care, And though my heart grows weary, I never will despair; I know that He is leading, Through all the stormy blast; The day of His appearing Will come at last. Rejoice, rejoice, O Christian, Lift up your voice and sing Eternal hallelujahs To Jesus Christ the King! The Hope of all who seek Him, The Help of all who find, None other is so loving, So good and kind. It is certainly feeling more like spring here in OKC. The wind is going crazy. Of course, it’s not just spring here where the wind comes sweeping down the plain but the other signs are consistent with spring. Our daffodils have bloomed and the hyacinth are almost ready to push their blooms open. The pollen count increased and somehow the wind is a little different. I listened yesterday when the house was quiet during nap time and the wind just sounded merciless outside. As I sat beside Philip’s bed yesterday morning a song started playing entitled, “The Master of the Wind.” I know the Master of the Wind. He controls both the inward and outward winds that blow in our lives. We didn’t get to see our Lord calm the winds for the disciples. But sometimes, inside it seems like the wind is blowing mercilessly. Those are the times when we can experience the Master saying, “Peace, be still!” I’m beginning to understand that is why my heart is rejoicing in our troubled times. The Lord is freeing me from the bondage within—the bondage to worry, to fear, to anxiety, to despair. These emotions have held me down in times past but little by little Christ is breaking their effects on my life and I’m living free. There is joy, joy unspeakable and full of glory! It is so exhilarating. The hymn, Redeemed, says it so perfectly! “I sing for I CANNOT be silent; His love is the theme of my song!” Situations change, people around us change but God and His love never change. It produces this song of freedom that can’t be stopped. Praise His Name!
Philip is doing okay. It’s obvious the progression continues. For the last week he has been more agitated, higher heart rate, more tremor, more little seizures, etc. The doctor talked to us at the end of last week about starting him on a new medication and we agreed it was time. This is another step in just keeping him comfortable. It’s a medicine intended to do overall neurological calming. The doctor used the term “neuro-storming.” Though this is typically used for a traumatic brain injury, some of the instances can apply to Philip because of the neurodegenerative activity of NCL. Essentially, he has a brain injury though not sudden. He is not to a complete point of neuro-storming but many signs are present for it. Thus, this new medicine will slow his brain down so that this neurological activity will not cause him so much discomfort. He started it yesterday and although I haven’t been there today, my friend who was visiting him said that he was asleep and very calm. Joyanna is getting her infusion and has slept most of the time. We’ll see what this week holds for her. She did okay last week but didn’t continue gaining as we have seen her over the last couple of months. Her arms and hands are very tight and hard to move and she wants to roll into a ball. All of these point to increase in muscle tone. We’re not sure why that increase suddenly now. One day at a time. That’s all we can do. Our Missions Conference starts at church tonight. Ben will stay home with Joyanna and Ethan and I’ll go to church for the beginning service. We always get excited about Missions Conference. This year, Ethan understands more about missions so it has been fun praying for the missionaries and explaining all that will go on. There will be services tomorrow and Friday. Then Sunday will be our big Missions Sunday. Missions is the center of God’s heart. He wants all the nations to know about what Christ did on the cross to forgive every person’s sins. The only way they can know is if someone will go and tell them. Here’s the song, “Master of the Wind” My boat of life sails on a troubled sea Whenever there's a wind in my sail. But I have a friend who watches over me When the breeze turns into a gale. CHORUS I know the Master of the wind. I know the Maker of the rain. He can calm a storm, make the sun shine again. I know the Master of the wind. Sometimes I soar like an eagle through the sky Above the peaks my soul can be found. An unexpected storm may drive me from the heights Brings me low, but never brings me down. CHORUS He can calm a storm, make the sun shine again I know the Master of the wind. It’s been a while. I’ll try to catch everyone up to where we are now. I think it will help me to go chronologically through time since February 8.
Saturday, February 10, TCC called us to let us know that Philip had tested positive for Influenza A. From the moment I heard that, I started to ask the Lord to strengthen us for his homegoing. I thought for sure this was what He would use to take him home. There have been a record number of flu deaths this year in many places. This flu has killed people a lot stronger than Philip so I began to prepare myself. But, that was not what the Lord had for Philip. He worked so obviously in every aspect of the situation, even from Friday, February 9. His doctor came in to see him on that Friday morning and said he just knew Philip wasn’t feeling well even though he didn’t really have any flu symptoms, maybe a little extra congestion (which for Philip happens often). He ordered the flu swab which came back negative. He didn’t settle for that, but ordered a viral panel of bloodwork. This came back positive for influenza A, thus they called us. He began Tamiflu on Saturday night, really before anyone would have even known he had the flu. I believe the Lord showed his doctor. He never really ran a high fever. He had a couple of days of increased congestion but they increased his meds to tackle that and his pulmonary treatments. By Thursday, February 15, he was pretty much back to his normal without even any signs of a secondary pneumonia. A MIRACLE! He sailed through the flu in his condition which means that God still wants Philip here on this earth to fulfill some part of His purpose. Every instance like this builds my faith in my God!! He can work in people, circumstances, etc. even for a little boy who can’t respond--to work out His Own will. He can work in the same way in my life…if I let Him! If I could only be as surrendered as Philip. Lord, please teach us to trust You! Joyanna had a regular check-up with her PCP on Wednesday, February 14. It was a pretty normal visit. He was able to evaluate her labs and everything looked pretty good as far as blood levels go. We asked him about some wrist splints for her because her hands are drawing closed now. Those were ordered just this week. She’ll wear them to bed each night to help stretch those forearm muscles to allow her fingers to relax. I went with some ladies from Heartland Baptist Bible College on the weekend of February 16-17 to watch some babies at a marriage retreat in Branson, MO. That was a fun trip but a lot of hard work, too. Fifteen of us ladies had 31 babies, mostly 9 months and younger. Phew! We had a good time. I love to get the opportunity to connect with the Heartland ladies. That same weekend, my cousin Levi and his wife, Christian and their kids came to OKC to visit with us. It came at a good time because Ben had Monday off so we were able to take their kids and ours to play together at a local gym. We enjoyed a wonderful time of fellowship and sharing things about raising kids. They headed home that Monday evening. Tuesday, February 20, we started our annual few days of ice and winter weather. That made some changed plans for Joyanna’s infusion on the next day. It didn’t end up being too bad on Tuesday so our roads were fine on Wednesday morning but another round of freezing rain was starting that afternoon. They asked us to come in early to get done as soon as we could. The clinics that day closed around noon so folks could get home off the roads before the worst. A few nurses stayed with us and a couple of other patients who had long infusions. We finished around 2 pm and sure enough, the roads were already pretty bad. The offices at HBBC had closed as well so Ben came up to get us home. I don’t consider myself a winter weather driver but I’m not as fearful in general anymore (Praise to the Lord!). I ended up driving the van and following Ben in the car and we made it home fine. Thursday morning, everything was cancelled and Ben didn’t have to be in to work until noon. We had a nice slow morning with a great breakfast together. (Ben usually makes breakfast if he is home in the morning.) It did warm up that day so our once-annual days of winter weather were over. I’m not upset. I think I live in Oklahoma for a reason. HA HA! That week we didn’t get over to see Philip as much as normal but he was doing just fine. I’m glad we were able to call up and check on him. We’ve had a few other events here and there in the last few days but mostly we have returned to nice steady days. Joyanna has not missed a day of school since she returned in January. She has been very healthy. Praise the Lord! Ethan has been sick a couple of times but they have passed mostly without incident, and no one else has gotten sick. Joyanna is still fairly strong. But it seems now she has too much tone in different parts of her body. Her right shoulder is pulling forward causing her to hunch over and lean to the left. This also causes her right hand to be doing some kind of involuntary movement where it pushes into her left hand repeatedly. We’re not sure about these changes. We decided just yesterday with her therapist that we would discontinue her feeding therapy. She is not really interested in eating and is not doing well with it. So we are content to let that go. She will continue all the rest of her therapies right now. She is almost completely off one of her seizure meds. Tomorrow is her last little dose. We do not see any significant changes either way so that is a good thing. If we were to see seizures return, obviously we would have to stop decreasing. We will give this change some time and then we may be able to continue weaning off another medication. That brings us to today. Joyanna went to school. I took Ethan to play with his cousin, Jay and went to see Philip for a while. He was doing well today—awake but resting pretty well. It was such a pretty day today that when we returned to our house, Ethan and I walked down to the park to play until Joyanna’s bus came home. Ben’s sister and family are coming over tonight so Ethan gets to play with Jay again this evening. Thanks for praying for us! God is so good! He always shows us that He is still near, still working. I honestly can’t wait to see what He will accomplish next. God Can Do Anything God can do anything, anything, anything God can do anything but fail He can save, He can cleanse He can keep, and He will God can do anything but fail Chorus: He's the Alpha and Omega, the beginning and the end He's the fairest of ten thousand to my soul God can do anything, anything, anything God can do anything but fail |
Philip & Joyanna's Story
December 17, 2009 -
August 25, 2018 Philip's memorial slideshow and funeral service can be viewed by clicking on the "Philip" tab at the top of this page. You can read more about Joyanna's story by clicking on the "Joyanna" tab at the top of this page.
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