I wanted to take this short time to share a praise. Last night, I researched again for a solution to our book problem. (Philip has a hard time turning pages, even board books.) I have looked it up several times. I was looking to solve the problem with our books or find books made for special needs kids with fine motor problems. Praise the Lord for an OT in California who keeps a blog. I found hers last night and she had a solution--rubber adhesive stoppers for the back of picture frames!!!! So easy!!! You can stick them in the bottom corner of each page and it separates the pages enough that children with fine motor issues can grab only the next page. So simple it left me saying, Why didn't I think of that? I have some of the felt adhesive circles on hand so I tried it today with one book. I think it will do the trick. I just watched him turn to every page of one of his favorite books. YEAH!!!!! Praise the Lord! This will make for one happier boy, I think!
I don't have much time right now to post so this will be short. Everything is pretty much the same. We will start adding MCT oil tonight. Hopefully, that will help.
I wanted to take this short time to share a praise. Last night, I researched again for a solution to our book problem. (Philip has a hard time turning pages, even board books.) I have looked it up several times. I was looking to solve the problem with our books or find books made for special needs kids with fine motor problems. Praise the Lord for an OT in California who keeps a blog. I found hers last night and she had a solution--rubber adhesive stoppers for the back of picture frames!!!! So easy!!! You can stick them in the bottom corner of each page and it separates the pages enough that children with fine motor issues can grab only the next page. So simple it left me saying, Why didn't I think of that? I have some of the felt adhesive circles on hand so I tried it today with one book. I think it will do the trick. I just watched him turn to every page of one of his favorite books. YEAH!!!!! Praise the Lord! This will make for one happier boy, I think!
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The last two or three days have been better. Philip has had some frustration moments but has actually been happy and smiling or laughing several times, as well. Praise the Lord for any smile. We saw his doctor yesterday. We are going to add the oil (MCT oil). It's basically part of coconut oil just pulled away from the other components. Something about it helps facilitate ketosis. He had lost a couple of pounds since the last doctor visit, so we will add a snack back into his meal plan. This will also help him be able to make it from lunch until his supper. He was having a little trouble making it without being hungry after his nap. We can add a snack in there. I can identify. I always wake up hungry when I take a nap. I guess he got that from me.
We think we are definitely seeing less seizures. That's a praise! It's unusual though to have less seizures and him be more irritable. We hope we can identify the problem and help him fix it. It's going to take time. His doctor is open to us trying to get him off some of the meds. We know they have their place but they do alter behavior, sleep and other things so we still want him to be on as little as possible. Plus, he is not even having the seizures he originally started taking those medications for so we don't even know exactly what they are doing now. She just wants us to wait to change any medications until we get the diet adjusted and stop making changes there. We understand her thinking. You don't want to make several changes and then wonder what actually made the difference. We are looking forward to the holidays. And...Philip will be 5 in about a month. We started to remind him about his birthday yesterday. It's not one of those things that stays on his radar so we have to remind him what a birthday is every year and what we do for it. Thanks for your prayers! The highlight for Philip over the last couple of weeks was returning to school. Otherwise, things are much the same. His dietician did lower his calories slightly but she can't change the diet anymore because she wouldn't be able to get all of his required protein into his daily intake. He didn't go into strong ketosis but he is still producing ketones and they are making a difference. He is possibly having less seizures. It's hard to tell. He is having seizures called reflex seizures now. They are a small jerk type seizure that are caused by sensory input. If he is not watching and we touch his hand, he will have a seizure. If he eats something that tastes strong, he will have a seizure. Certain changes in lighting or visual stimuli will cause a seizure. His doctor said that these seizures appear at times on the ketogenic diet. Mostly, we just think that they are changing as his seizures have done over the last year and a half. This is just a new type of seizure to deal with. That's why it's hard to tell if he is having less of the other seizures because they look a lot the same. One is just random and one caused by sensory issues. We can start using a special ingestible oil that helps produce ketosis so that will be our next step. It's not an essential oil but an oil recommended by his doctor.
He is still not using very many words and is very frustrated with life in general. Time change sent him for a tailspin. We are still recovering from that. We still can't really put our finger on why he is so upset these days. We're continually adapting and making changes to try to understand and help him. It has been challenging. We've heard a lot of screaming lately. Really life is just becoming routine with things as they are. I fix all of his meals in divided containers three days at a time. Then, we can just grab the next container out when it's mealtime. That has helped a little to alleviate the craziness to each day. He is eating and drinking well. But it seems when we leave one thing behind we pick up another. So, when he hated eating, he played well. Now that he likes eating, he doesn't want to play. Who knows? My husband and I say that a lot these days. Who knows? Please pray for Philip. Pray for our family. We need wisdom and guidance and ask God for it daily. But I think now I'm just asking for His grace to take each day as it comes. It doesn't seem now that we will see complete reversals or amazing developments but we have been called upon to be faithful to the job God has entrusted to us. He doesn't ask us to do more than we are able to do through Him. Praise His Name we have Him to enable us. There are days when I don't find the joy in it just like most of you have days when you don't find the joy in driving through traffic to work or doing the dishes or all the other tasks of life we face. There are other days when the Lord shows me He is the Joy of life. Thank you, Lord, for those days! |
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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