Philip's teacher, Mrs. Ballard, sent me this text this morning. I asked her permission to share it with you on the blog. It speaks for itself.
"I want to share a sweet story with you. My personal children know all of the students in my class. With the very difficult week Philip has had, we have been praying together as a family for him. Yesterday after school my son was very excited to tell me a story. During his character ed class he was telling his best friend about Philip and how he was worried about him and how he was praying for him. After Caden told his friend... his friend went up to the teacher and said Caden has an announcement. So the teacher asked Caden what his announcement was and his friend told him to tell the class about Philip. Caden told the class...My mom is a special ed teacher. She has a little boy in her class named Philip. He has really bad seizures. On Wednesday, he had a big seizure and got hurt. My mom was really scared. Philip is a cute kid. His mom and dad can't find any doctor to make him better. So we pray for him to be better. I was so proud of him for having such a kind heart, that as a 7th grade boy, he would stand up and address his class about praying for Philip. The next part is quite amazing. My son goes to a public middle school and his teacher said ... Caden thank you for sharing that story. Students, if you believe in prayer, please bow your heads and say a prayer for Philip. And the teacher bowed her head and prayed in class in front of her students. I don't tell you this story to brag on my son, although I am proud of him. I tell you this story because I want you to know how Philip touches so many lives, how an entire class of 7th grade students who have never met him are praying for him, and how he has forever become a part of my heart. I hope he has a good day and you guys have a great weekend." Praise the Lord for caring people who touch our lives everyday. God is good! Philip's seizures started again on Tuesday around lunch. I knew they would return but I hoped for his sake to have as many seizure free days as he could. As it is, he had a week without seizures. That was nice. However, it is always hard to watch him the first couple of days after they start back. He knows the difference. He's still trying to accomplish all that he was doing seizure free but he can't. The seizures just won't let him. Unfortunately, this time, they came back at the beginning with a vengeance. It seemed like many more seizures and more intense. We're not sure exactly why--it could have been ketone levels building again after he started metabolizing correctly or the dose of his seizure medicine that we took away just before the flu started. Last night was the worst night. I had to give him his rescue medication around 8 pm because he was having so many seizures back to back. Tonight, he did much better though. We are hoping it was just the transitions. He is getting well after the flu, going back into ketosis, and changing a seizure medication all at once. That's a lot for his body to transition through.
We still don't know why the seizures stopped. We thought it would be the fact that he wasn't eating. However, except for a couple of days, I kept Philip's diet the same as I possibly could so we could see the difference. As far as I know, comparing last year's flu and this year's, the only two things the same were the flu virus itself and Tamiflu. Since that doctor assured me the flu wasn't a cure for epilepsy :), I'm thinking it must be Tamiflu. Dr. Herren is checking into it. It would be really neat to find out if Tamiflu could be developed into a seizure medication. I don't know all the pharmaceutical information but I've heard of other medications that were found to have multiple uses. Joyanna did come down with the flu on Sunday night. She is doing well though. She had a couple of tough days but is rebounding nicely now. In discussing these transitions with Philip's doctor, she made me aware that one of the doctors from Johns Hopkins keto diet program is coming to OKC. We were thrilled to hear he will be giving a lecture to caregivers. We are very excited to attend, Lord willing. Then, yesterday, when we spoke again, she told me that this doctor offered to see a few patients in the clinic while he was here. She made that option available to us and of course, I enthusiastically agreed. Philip is the only patient of Dr. Herren that hasn't "behaved" on the keto diet. She said we could share our observations with him and "pick his brain". I am sure he has so much experience. Johns Hopkins is where people with difficult cases go for a second (or third or fourth) opinion from the best doctors. Essentially, this man is a leading doctor in epilepsy and the ketogenic diet. His name is Dr. Kossoff. Click here to read about him. Please pray that we can be thorough in discussing Philip's case with him and that the Lord will give him wisdom to help us. This is an exciting opportunity. Pray that all of these transitions will end smoothly and that the Lord would give us wisdom about his seizure medication, whether to leave it the same or go back to the dosage he was at two weeks ago. I haven't forgotten about sharing what the Lord has showed me. He just hasn't showed me a lot of time to share it. :) Philip is continuing to do well. He has not quite returned to normal but it is hard to decide what is normal anyway. There are two odd things to note about the similarities between this year's and last year's flu. Although Philip has handled the flu itself much better than last year, he has once again experienced some oral dysphagia, trouble swallowing and controlling his tongue, lips, etc. This is extremely frustrating since we thought we had come through pretty unscathed. He does not want to eat again, probably because he can't get his muscles in his mouth to work the way he wants them. We know now this will just take time to work through but it opens the door for lots of unpleasant meal times. Please pray that he can regain that motor movement very quickly. I'm sure it's frustrating to him. The other similarity is that he is not having any seizures. What?, you say. We're saying it, too. We thought last year he didn't have seizures because he wasn't eating very much during his bout with the flu. This year, he has had almost all of his meals. He is eating and he is still not having any seizures. THIS MAKES NO SENSE! We are glad for it but we would sure love to figure it out. Last year, a neurologist said we couldn't list the flu as a cure for epilepsy. I'm getting real close now. I will be watching closely to see when they come back. I want to be able to tell his doctor all the information I can so she can think through it. Please pray that if there is something to be found or analyzed in this situation that would help Philip that The Lord would show it to us or his doctor.
So far, only Ethan managed to get the flu as well. He is doing fine just battling through the nasal congestion that tends to linger after the flu. Ben, Joyanna and I have been fine, no symptoms whatsoever so thank you for praying that we all didn't get it. Philip came home from school on Tuesday very tired and flushed. His bus driver and her assistant knew something was wrong. Sure enough, when I got him inside he had a fever and was almost asleep while I was carrying him. He hadn't slept well the night before but I immediately knew it was more than just being tired. I had a feeling it was the flu but we decided to take him and have him tested to make completely sure. I took him to OU children's and I was right. He did have the vaccine back in November or December but the doctors are saying the vaccine missed a strain of the flu and that's what is spreading. We got the tamiflu prescription worked out with the ER doctor. Since most kids take the suspension liquid and Philip can't have that because it has sugar, we had to get a capsule form. However, he can't take an adult dose and capsules can't be cut in half. Thankfully, tamiflu does make a smaller mg capsule though it is much less common. We had to find the pharmacy that had it but that didn't take too long. Those are the kind of things that make us thankful to be living in a big city. We were able to start a dose by late Tuesday night. We're thankful Philip didn't have to be admitted this time. The good thing his doctor told me is that if you've had the vaccine, you'll still have a less taxing time. We would say that. Last years flu knocked Philip out for several weeks but he seems to be doing really well this time. He is already back up and playing on the floor today, less tired and hasn't had a fever much at all since he started the tamiflu. I'm praising the Lord that it has seemingly gone so well. This week is the Heartland National Church Planting Conference so the timing was not ideal but I wasn't really thinking I'd be able to go to most of the services anyway. It's been a little bit of a stretch for Ben but he was thoughtful to suggest he stay home with the kids Wednesday night so I could go to one service at SWBC. I'm really thankful for the live streaming HBBC does. I've been able to watch parts of the services most mornings with the kids. They all like the congregational music. I love to hear the church planters' testimonies and then watch The Lord take care of many needs for them through the pastors and others that give. I've been encouraged just listening. Pray that Philip continues to recover well and that we don't pass it around. Philip has had three good days in a row. It is such a blessing when that happens. He has been happy and moving around a little more. He was able to use some words. He started out Friday night having a good time "beating up" Uncle Drew. He was laughing and smiling. His word for Friday night was 'zero'. He seems to latch onto one word in a setting. Saturday evening he scooted around our front living room throwing nerf-type basketballs and chasing them. Sunday, he made it through the day with no fits and although he didn't make it through the evening service, it was because he wanted to talk, not because he was crying or upset. Today, he came home from school happy and woke up from his nap happy and played in our play area instead of sitting on the couch. Praise the Lord for good days! We decreased one of his medications by one dose on Saturday. We had been talking to his doctor about this and had agreed to wait until after the holidays. Usually, when Philip changes a medication, he is like an addict in withdrawal. That's why these past two days especially have been amazing because we haven't seen that side effect yet. It could happen tomorrow but we'll take that when it comes and just be thankful for an easy transition if it continues this way. I am once again watching closely because I need to know if this med change is causing a seizure increase. We want him to be on the least dosage possible but of course, not jeopardize his current seizure control. It's a hard balance to find. Please pray his seizures don't increase and that we do truly have an easy transition. Please pray that his new glasses near the end of the week will help him see better. Praise the Lord with us for three good days in a row. Philip had an eye appt yesterday. As far as his actual eye is concerned his farsightedness is better. He got a little weaker prescription for his glasses so we hope this means he will keep them on. We will get the new glasses next week and I am eager to see if he can see better or if more of his vision issues have to do with his brain. He can no longer watch our tv. He tries to look at the tv but can only watch for a few seconds before it seems he has to look away. He also cannot see the things out the car window he always loved-a wind turbine near our house (fan to him), flags, the moon. He complained about his glasses so much recently that we haven't been making him wear them. I tried to start writing some of the thoughts but it will really take longer to compose things like that. I'll try to make time this weekend because I really want to share. The Lord is good and so patient to bring us along in our thinking. This morning he had his hot dog meal for breakfast (we vary it up.) so I was trying to get him to say, hot dog. He did! It was so cute. Hot dog! That may become a favorite of ours. I got such a kick out of it, he thought it was funny too. I've been thinking and praying about many things recently. It's taken me a while and because of the nature of those thoughts, I haven't been as eager to post, I'll admit. I've never had much luck at hiding my feelings and I doubt it would be much different in writing. Knowing that, I've been reluctant to post all my meanderings. Also, we don't currently have an Internet connection at the house so everything has to be posted from my phone and that definitely takes more time than the computer. However, two things have recently changed my mind somewhat. I know there are many of you who are so interested in Philip and how he is doing. You check often to see what's going on. That means so much to me so I want to try to let you know even some of the little things throughout our days. The other thing that makes me want to double my efforts is an article I read on Sunday in the OKC newspaper. Another young mother here in the OKC metro keeps a blog about her family. After I read her story, I was in tears and realized how much I had to be thankful for. She lost her husband to cancer and was a single mom to their one son with a baby on the way. The baby girl was born and at two weeks developed bacterial meningitis and was in ICU for a month with severe brain damage. In fact, when she made the decision to remove her from the ventilator, she was expected to pass away but she didn't. She kept on breathing and progressing. She is at home now but has a long road ahead of her to fully recover. This all happened in the last year. They specifically mentioned that this young woman blogs about their journey and besides communicating to others what is happening, she is encouraged by sharing. I read some of the posts they included in the article and she is definitely a believer. She gives God the glory and trusts in Him still despite all that has happened. It inspired me to keep recording our journey so God can get the glory from our lives and so each of you who pray can know better how to pray. I'm still not going to be able to post every day probably but I intend to be more regular in posting. I want to share some of the thoughts and prayers and what God has shown me over the last couple of months but this post is already long, especially on the phone. 😄 I hope to share over the next week. Thanks for praying. |
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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