Thursday, June 16, 2011
EEG Results
When we did the EEG last week, I knew that the clusters of eye movement/arms lifted up were seizures, but also had some concerns about other movement Levi was experiencing. The EEG showed that those other movements are not seizures, so that is very good news! The clusters are Infantile Spasm seizures, which we had already known. We had done some research on this type of seizure, and some of the information we read was very scary. I spoke to the neurologist about what I had read, and thank God, she was able to put my mind at ease. She said that although these are dangerous seizures in that they can cause brain damage, and can be difficult to bring under control, the biggest risk would come into play on down the line if they are not controlled. That is the reason they use such aggressive treatments in the beginning. So we have gone up again on the Topamax, to 60mg in the morning and 60mg in the evening. We have plenty more room to increase if needed, but they want him to be on the least amount of medicine as possible, which is why we are increasing at a slow rate. The seizures have not stopped, but we do notice a decrease. Hopefully soon they will stop altogether! This is yet another praise report that I attribute to fasting and prayer. Since we began the fast 16 days ago all we have had is good news! Praise God!
Wednesday, June 15, 2011
Prayers for Baby Caitlyn
The following is copied from my friend's facebook wall. Please join us in praying for this little baby girl. I know some of what her parents are going through and am asking for prayers for Caitlyn as well! Thanks so much!
A little about Caitlyn's family.
Caitlyn was born on May 25th at 8:06 am weighing in at 6 lbs 13 oz 19 inches long. She is the daughter of Nathan Bishop who is from Greenfeild and Amy Bishop from Jerseyville. She has an older brother, Matthew. She's being as strong as she can be!! They just want Caitlyn to be healthy and be able to bring her home. So im creating this event to give our uncommon friends a chance to help! Shes need...s all the prayers she can get! So lets all say a special prayer for baby Caitlyn and her family!! And please feel free to take this event and share it with all of our uncommon friends!!
Caitlyns story:
When baby Caitlyn was born she had a severe infection that wiped out her entire "system" they think they have that infection treated and now they are repairing the damage it did to her body. She has a problem with her heart called PDA. Which is basically the two valves that are open in the womb that would normally close a week after birth. It is very common in preemie babies to have to have this surgery to help them close however, she was not a preemie and this is the first time Children's hospital has seen a full term baby have this problem where one of the valves hasn't closed yet. She will have to have the surgery asap but she has to be stable for that to happen so they currently have her in a medically induced coma to let her body rest while the meds try to fix everything. She also has what is called a surfactant defiency (sp?) The lube that your lungs produce is called surfactant and it helps the lungs open back up. Caitlyn isn't producing any of that. She had pulmonary hypertension and swelling in her brain. So she has several things that are wrong but right now the heart operation is the most important to fix. I will try and keep the wall to the event updated the best i can when new info on baby Caitlyn is avalible. THANK YOU EVERYONE!! Now go...pray your hearts out!!
A little about Caitlyn's family.
Caitlyn was born on May 25th at 8:06 am weighing in at 6 lbs 13 oz 19 inches long. She is the daughter of Nathan Bishop who is from Greenfeild and Amy Bishop from Jerseyville. She has an older brother, Matthew. She's being as strong as she can be!! They just want Caitlyn to be healthy and be able to bring her home. So im creating this event to give our uncommon friends a chance to help! Shes need...s all the prayers she can get! So lets all say a special prayer for baby Caitlyn and her family!! And please feel free to take this event and share it with all of our uncommon friends!!
Caitlyns story:
When baby Caitlyn was born she had a severe infection that wiped out her entire "system" they think they have that infection treated and now they are repairing the damage it did to her body. She has a problem with her heart called PDA. Which is basically the two valves that are open in the womb that would normally close a week after birth. It is very common in preemie babies to have to have this surgery to help them close however, she was not a preemie and this is the first time Children's hospital has seen a full term baby have this problem where one of the valves hasn't closed yet. She will have to have the surgery asap but she has to be stable for that to happen so they currently have her in a medically induced coma to let her body rest while the meds try to fix everything. She also has what is called a surfactant defiency (sp?) The lube that your lungs produce is called surfactant and it helps the lungs open back up. Caitlyn isn't producing any of that. She had pulmonary hypertension and swelling in her brain. So she has several things that are wrong but right now the heart operation is the most important to fix. I will try and keep the wall to the event updated the best i can when new info on baby Caitlyn is avalible. THANK YOU EVERYONE!! Now go...pray your hearts out!!
Change in Hours for Levi's Party
We have decided to have the party from 11-4 instead of 6:00. I think that would just be too long for the little guy to handle. I hope this doesn't cause any inconvenience! Looking forward to seeing a lot of people there. Can't wait to meet you!
Tuesday, June 14, 2011
Eye Appointment and Cast Checkup
Yesterday we went to the long awaited appointment with the eye doctor. It was pretty much what we expected. The good news is that his eyes are formed correctly and there is nothing wrong with the eye itself. However, due to the brain damage his brain is not comprehending what his eyes are seeing, or something like that. I understand what it means but am having a difficult time putting it into words. The diagnosis is cortical visual impairment, alternating exotropia, and legal blindness. The brain is still developing and will continue to develop through at least 2 years of age, so it is possible that he will overcome this and he will gain full vision. We feel as though we have seen improvement in the last week or so, so we are encouraged by this news.
The spica cast was checked today and looks very good. We will be scheduling surgery to replace this cast with a short cast (one that goes to the knees on both legs) for next week or the following week. I was surprised they think he still has room in there, but they are the experts. I'm glad he will be able to keep this cast until originally planned. We are almost four weeks into the twelve weeks of cast and surprisingly it's gone by fairly fast!
Still waiting on the results of the EEG. Levi was having so many seizures Sunday I was worried, but last night and today they seem few and far between, thank God! He does have some muscle pain now that he is on the lowest dose of Baclofen, but it's semi-manageable with Tylenol and Motrin. I had to hold him all night last night, but at least he was able to sleep in my arms. We will be glad to get completely off Baclofen and see if that is the cause of the new seizures!
Yesterday we filmed a video testimony for church of all the Lord has done for us in these first six months of Levi's life. It's important to let others know that God still works miracles and, even when we can't feel Him, He is with us! After the video airs at church we will either post it or the link for it on here. For anyone interested in our church, you can check it out at www.enjoychurch.tv It's practical teaching with a humorous twist. We love it!
That's all I have for now. Don't forget Levi's Celebration Party on June 18. We hope to see lots of people there and want to meet those of you who have been praying with us and/or following Levi's story. For info, check out the post from last week.
The spica cast was checked today and looks very good. We will be scheduling surgery to replace this cast with a short cast (one that goes to the knees on both legs) for next week or the following week. I was surprised they think he still has room in there, but they are the experts. I'm glad he will be able to keep this cast until originally planned. We are almost four weeks into the twelve weeks of cast and surprisingly it's gone by fairly fast!
Still waiting on the results of the EEG. Levi was having so many seizures Sunday I was worried, but last night and today they seem few and far between, thank God! He does have some muscle pain now that he is on the lowest dose of Baclofen, but it's semi-manageable with Tylenol and Motrin. I had to hold him all night last night, but at least he was able to sleep in my arms. We will be glad to get completely off Baclofen and see if that is the cause of the new seizures!
Yesterday we filmed a video testimony for church of all the Lord has done for us in these first six months of Levi's life. It's important to let others know that God still works miracles and, even when we can't feel Him, He is with us! After the video airs at church we will either post it or the link for it on here. For anyone interested in our church, you can check it out at www.enjoychurch.tv It's practical teaching with a humorous twist. We love it!
That's all I have for now. Don't forget Levi's Celebration Party on June 18. We hope to see lots of people there and want to meet those of you who have been praying with us and/or following Levi's story. For info, check out the post from last week.
Sunday, June 12, 2011
Nice Weekend
Levi has had a nice weekend. Saturday he stayed with Dad while I went yard saling with Aunt Misty and found some adorable stuff for him (sandals!) and that afternoon we went to Riverbend for Lisa's 18th birthday party. Happy birthday Lisa!!! He did wonderfully at the party and loved being cuddled by family. We were concerned that he would be in a lot of pain this weekend since we decreased Baclofen, the med that controls the tightness in his muscles, but it has been manageable. A few doses of Tylenol or Ibuprofen have made him more comfortable. This morning we went to church and he was terrific all through service. He has spent the remainder of the day napping and looking at the toys on his play gym.
Tomorrow we have our long awaited opthamology appointment. We do feel like he has been seeing more clearly in the last week and are encouraged by that. I'm excited to see what the doctor says.
He has been making progress too! The past couple days he has been eating better and has taken his bottle with little to no chin supoort! He's also been doing more with his hands and his arms, stretching and moving around. We've been working with him in therapy to bring his hands to center and feel his own hands, and last night he was sleeping with his hands overlapping on his chest! I feel like we are seeing many positive improvements in a short amount of time. Once he starts learning I think he will grow by leaps and bounds!
Less than a week to Levi's party, we are looking forward to it!
Tomorrow we have our long awaited opthamology appointment. We do feel like he has been seeing more clearly in the last week and are encouraged by that. I'm excited to see what the doctor says.
He has been making progress too! The past couple days he has been eating better and has taken his bottle with little to no chin supoort! He's also been doing more with his hands and his arms, stretching and moving around. We've been working with him in therapy to bring his hands to center and feel his own hands, and last night he was sleeping with his hands overlapping on his chest! I feel like we are seeing many positive improvements in a short amount of time. Once he starts learning I think he will grow by leaps and bounds!
Less than a week to Levi's party, we are looking forward to it!
Thursday, June 9, 2011
Well we are still waiting for the results of the EEG test done last week. It seems to be taking longer than expected, and I'm just praying that it shows that he is not having Infantile Spasm seizures and it's something different and way less concerning! Patrick has been researching online and found that the medication that eases the tightness in his muscles may cause seizures. So we looked back at hard dates and found that these new seizures began within a few days after we started the medication. We spoke with the doctor and she has decreased the medication until Monday but has not yet prescribed a new med. She said if the seizures decrease by Monday we will take him off Baclofen, but if not we will keep him on it. Patrick and I discussed it and agree that we want him all the way off Baclofen before we decide if it is what caused the seizures or not. When we began that med he was at a much smaller dose than he is now, and so we feel that just decreasing it will not give us an accurate picture. I thank God for these doctors, though, and the fact that they listen to us and respect what we have to say. In fact, many of you may remember the doctor that I ranted about when Levi was in the PICU. Turns out he knew what he was talking about. I really didn't care for his attitude in the beginning, but we have grown to respect his opinion and feel that he is much kinder than we originally believed.
I've been looking back over some of our recent posts, and it brings to mind what Pastor Daren is always teaching, that when you are expecting a miracle you should look back at all the miracles God has done for you in the past. I'm believing that these Infantile Spasm seizures will go away very soon! Looking back, I see that He has not only cured Levi of meningitis, but there were things like the PICC line. I hated that thing! But we walked it out and got past it and now I rarely think about those days. At the time they seemed neverending, but that's been several months ago now. We have gone through extreme screaming fits and projectile vomiting which turned out to be acid reflux and is now well under control. It's only recently that Levi has begun to sleep well at night. All these issues seemed to be insurmountable at the time but once taken care of are rarely thought of anymore. I know that this will be the case with the Infantile Spasm seizures! It's something we must walk out that will pass with time and I believe Levi will be none the worse for it. God is working His plan through us, and although I have no idea where He is going with it, He knows, and that will just have to be good enough for me. I trust Him.
Please continue praying for our little Levi, and know that we are praying blessings on all of you! Don't forget about the party on June 18th!
I've been looking back over some of our recent posts, and it brings to mind what Pastor Daren is always teaching, that when you are expecting a miracle you should look back at all the miracles God has done for you in the past. I'm believing that these Infantile Spasm seizures will go away very soon! Looking back, I see that He has not only cured Levi of meningitis, but there were things like the PICC line. I hated that thing! But we walked it out and got past it and now I rarely think about those days. At the time they seemed neverending, but that's been several months ago now. We have gone through extreme screaming fits and projectile vomiting which turned out to be acid reflux and is now well under control. It's only recently that Levi has begun to sleep well at night. All these issues seemed to be insurmountable at the time but once taken care of are rarely thought of anymore. I know that this will be the case with the Infantile Spasm seizures! It's something we must walk out that will pass with time and I believe Levi will be none the worse for it. God is working His plan through us, and although I have no idea where He is going with it, He knows, and that will just have to be good enough for me. I trust Him.
Please continue praying for our little Levi, and know that we are praying blessings on all of you! Don't forget about the party on June 18th!
Tuesday, June 7, 2011
Celebration Party for Levi on June 18th
We are having a party for Levi on June 18th at Provision Living Center, 1358 D'Adrian Professional Park, Godfrey, IL, from 11-6. This is an assisted living center with lovely banquet accommodations. The residents have been praying for Levi since he was in the PICU, and since many of them would be unable to travel elsewhere, we want to give them a chance to visit with him. Everyone is invited! We are looking forward to spending the day with our family and friends, as well as meeting many of you for the first time! We will serve light refreshments, and the party will be conducted like an open house, so you may stay for as long or as short a period of time as you wish. We hope to see a huge gathering of people on that day so we may be able to personally thank you for all your continued prayers!
Monday, June 6, 2011
Updates...
We increased the Topamax on Friday to 45 mg twice a day and noticed a drastic reduction in seizures on Saturday and Sunday! Today we have seen a bit more, but still not nearly as many as before! Praying that Topamax will control these seizures! We had a wonderful BBQ with our small group from church on Saturday afternoon (which was interesting considering we are fasting meat, lol, but we had plenty of tasty food to eat!) and then on to church that evening so we could sleep in on Sunday. Levi was happy to be cuddled by our friends and was terrific during the entire BBQ and continued his good behavior through church until about half an hour before service ended. He was getting mightily hungry! Sunday we relaxed around the house and Moga (my mom) sat with him while we did some grocery shopping.
Today Levi had both physical and occupational therapies. He did very well through the first half of physical therapy, but was sleepy during the second half. He had more than an hour nap before the occupational therapist came in, but evidently it just wasn't enough because he was extremely cranky! I'm so glad they teach us what to work on with him in between visits. Right now we are focusing on head control, bringing his hands together, different positioning, various stimulation such as toys, music, etc. Twice this evening he almost had his hand in his mouth! I could tell that's where he meant for it to go, but stopped just short. That's okay, he'll get there, his brain is making important connections right now and it's great to see any small step in the right direction! He's continuing to eat better which is a huge relief to me, and he's smiling more often. Please pray with us that Topamax get these seizures completely under control in the very near future! I am praying blessings on all of you!
Levi hooked up to eeg.
Levi's first wagon ride!
Snoozing in wagon :)
Today Levi had both physical and occupational therapies. He did very well through the first half of physical therapy, but was sleepy during the second half. He had more than an hour nap before the occupational therapist came in, but evidently it just wasn't enough because he was extremely cranky! I'm so glad they teach us what to work on with him in between visits. Right now we are focusing on head control, bringing his hands together, different positioning, various stimulation such as toys, music, etc. Twice this evening he almost had his hand in his mouth! I could tell that's where he meant for it to go, but stopped just short. That's okay, he'll get there, his brain is making important connections right now and it's great to see any small step in the right direction! He's continuing to eat better which is a huge relief to me, and he's smiling more often. Please pray with us that Topamax get these seizures completely under control in the very near future! I am praying blessings on all of you!
Levi hooked up to eeg.
Friday, June 3, 2011
24 Hour EEG, Spica Cast Checkup
The last day has been exhausting! Sitting in a tiny room staring at your child and recording every little seizure is definitely not on my top list of fun things to do, but it was necessary and I'm glad we did it! The EEG tech, Roz, is just a kind, caring, and awesome lady, we are always happy to see her! He is having quite a few more seizures than we thought, but of course when we are home we don't sit in front of him and stare at him all day. lol They are using this as a baseline and we will find out the full results next week. We are increasing his Topamax to 45 mg twice a day. At first this made him really sleepy and he didn't want to eat very much, but I guess he's getting used to it because he's been more awake and alert during the day, but still sleeping through the night (thank God!). After we got home this afternoon he took a lovely nap in his own bed and then ate an entire bottle with very little chin support! The past week there have been times when I could only get an ounce down him at a time, so this is very good news! Also, he seems to have better trunk control and he's been lifting his head and trunk up from a reclining position! I just love, love, love to report on happy things like that!
We saw the ortho doctor about Levi's spica cast today as well. He thinks the cast is fine. He has grown quite a bit but he has plenty of room to grow still. Well, he would know better than me. lol I'm glad we saw him anyway, it sets my mind at ease that he isn't squished up in there. They cut a small portion away from the toes because his little toe didn't have any more room, and that seems to work out great. They took x-rays and said that the cast is doing it's job, so we are going back in two weeks to check again. If they have to replace it at that point because it's too tight then they will also do the procedure where they insert the dye and x-ray his leg before they replace it. I think if they have to do that they may go ahead and put on the cast that goes only to the knees on both legs, but that is my own theory. I'm just assuming they wouldn't want to replace the cast then turn around and do it in 2 weeks at the planned 6 week replacement.
Does that make sense? I feel like I'm rambling. lol The darn monitor leads kept coming off last night setting off the alarms and driving me crazy, and I'm pretty tired today, but I feel really great. The fast is going really well! I feel as if we've had great news and Levi has been doing more and feeling better since we began it just three days ago. I know the Lord is faithful and whatever we have to walk through He is right there with us holding us up. Thank you all for your continued prayers, and don't forget about our celebration party/meet and greet for Levi on June 18 at Provision Living Center in Godfrey, IL from 11-6. Everyone is welcome! We are looking forward to spending the day with our family and friends, and meeting those of you that we don't even know who have been so kind to pray for our little guy all this time! We will serve light refreshments and you can feel free to stay the whole day or a small part of it. Looking forward to it!
We saw the ortho doctor about Levi's spica cast today as well. He thinks the cast is fine. He has grown quite a bit but he has plenty of room to grow still. Well, he would know better than me. lol I'm glad we saw him anyway, it sets my mind at ease that he isn't squished up in there. They cut a small portion away from the toes because his little toe didn't have any more room, and that seems to work out great. They took x-rays and said that the cast is doing it's job, so we are going back in two weeks to check again. If they have to replace it at that point because it's too tight then they will also do the procedure where they insert the dye and x-ray his leg before they replace it. I think if they have to do that they may go ahead and put on the cast that goes only to the knees on both legs, but that is my own theory. I'm just assuming they wouldn't want to replace the cast then turn around and do it in 2 weeks at the planned 6 week replacement.
Does that make sense? I feel like I'm rambling. lol The darn monitor leads kept coming off last night setting off the alarms and driving me crazy, and I'm pretty tired today, but I feel really great. The fast is going really well! I feel as if we've had great news and Levi has been doing more and feeling better since we began it just three days ago. I know the Lord is faithful and whatever we have to walk through He is right there with us holding us up. Thank you all for your continued prayers, and don't forget about our celebration party/meet and greet for Levi on June 18 at Provision Living Center in Godfrey, IL from 11-6. Everyone is welcome! We are looking forward to spending the day with our family and friends, and meeting those of you that we don't even know who have been so kind to pray for our little guy all this time! We will serve light refreshments and you can feel free to stay the whole day or a small part of it. Looking forward to it!
Wednesday, June 1, 2011
Fast for Levi
Patrick and I decided to fast and pray for Levi's healing during the month of June. We are fasting animal protein (meat, eggs, cheese, ice cream, etc). For those of you who know me, you know that ice cream is one of my most favorite things ever, and one bowl (or cone, or sundae, or blizzard...) can fix all the world's problems. lol I'm really excited about this fast! I want to grow closer to the Lord and catapult Levi into healing of these newest problems. Today was the first day of our fast, and we've gotten some of the most wonderful news! We finally visited the urologist for the fluid sack on Levi's scrotum. It is nothing to worry about! It is a simple hydrocele which is very small and should clear up on it's own within the next six months! WOW! To visit a new doctor and come away with news like that is definitely an answered prayer! Also, I've just felt so much more peaceful and relaxed today. I've been feeling lately as if a dark cloud were hanging over our heads all the time, even on the good days, but today I felt a covering. I know this is the peace that surpasses all understanding. I'm so thankful for that!
Tomorrow we go in for a 24 hour video eeg to gain more understanding of these new seizures and to see if the Topamax has made an impact. Friday we will see the ortho doctor because Levi is growing so much his cast is becoming tight. Hopefully they can just modify it instead of replacing the whole cast! Please pray with us that the Topamax is working well and his seizures will be gone and ultimately, that he is healed of epilepsy altogether! We ask this in Jesus' name! Thanks for your prayers :)
Tomorrow we go in for a 24 hour video eeg to gain more understanding of these new seizures and to see if the Topamax has made an impact. Friday we will see the ortho doctor because Levi is growing so much his cast is becoming tight. Hopefully they can just modify it instead of replacing the whole cast! Please pray with us that the Topamax is working well and his seizures will be gone and ultimately, that he is healed of epilepsy altogether! We ask this in Jesus' name! Thanks for your prayers :)
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