Need Prayer!

Thanks to everyone who has been praying for Levi to gain head control!  Since the day I asked for prayer he has been working very hard to hold his head up, and is doing an excellent job!  All his therapists have noticed a significant difference, as have we!  Thank you and please continue to keep his head control in your prayers.  Once he learns that the sky is the limit!  Also, as always, please pray for his seizures to STOP!  They have gone back up again and he is having 30-50 a day again.  He was doing so well before!  I don't know if the shots are to blame, or the higher dose of Lamictal. I plan on speaking to the neurologist tomorrow.  I would like to take him back down to 4 mls of Lamictal because he was doing so well at that dosage, and then begin weaning Phenobarbital.  I would like for him to come completely off of that med!  He has been on it since he was three weeks old, and the original plan was for him to come off it within a year.  I can't believe he's only about six weeks away from his first birthday!  If you could please add wisdom for making the right decision, I would so appreciate it!  This poor little baby is progressing despite all the sedating meds (5) that he is on, and the daily seizures.  I expect him to hit the ground running and catch up quickly once everything is brought under control.  You can see that he tries so hard!  Thanks again and God Bless!

First Day Lamictal @ 6 mls

Today has been a busy day!  We ran some errands, shopped for some Fall decorations for our new house, and tuckered Levi out completely.  Yesterday was his first day with the increased dose of Lamictal, and he slept almost all day.  His seizures were down, but I didn't know if it was from sleeping so much, because he typically doesn't have them when sleeping.  It usually takes him about three days to get used to new meds, so I expected him to sleep a lot today too, but I was wrong.  He took a tiny morning nap and then was up the rest of the day.  I just put him down for his afternoon nap and it's almost 3:00!  He's been so smiley today.  I was bouncing him on my hip and he grinned bigger than he ever has, I thought he was actually going to laugh!  It's great to see him so happy.  AND even though he's been awake, his seizures are still way down today!  This is so encouraging!  Please pray with us that the seizures will stop!  Also please keep his head control in your prayers.  Today he's been doing well with it.  He needs to be able to hold it consistently so he can learn to sit, crawl, walk, and run and play with other little boys!  Thanks for all your prayers, we are praying special blessings on anyone who has said even the smallest prayer for our Levi!

My Elmo Jammies :)

I pulled my shirt up!

Catching Up

For the past two weeks we have been moving.  Oh, the move itself wasn't too bad, we got all the furniture in and arranged within a weekend, but the back and forth to the old house trying to get it in order has been torture!  I have 4 cats, and can only bring 2 with me, so I have been desperately trying to adopt out the sweetest, youngest kitties, but have found no interest.  I'm to the point of being forced to send them to a shelter, which is NOT what I want for them, so if anyone out there can offer a loving home for 1 or 2 wonderful kitties, please comment on here or on facebook (Lynn Henderson McDonald).  Thanks!

Levi has been doing very well for the most part.  As noted in my last post a few weeks ago, his seizures are down!  Before we started Lamictal he was having 60-80 seizures a day, now he is down to 20-40!  He even had a few days under 20.  Then last Thursday he finally had his 6 month shots plus a flu shot.  That night he suddenly spiked a 104 fever, his eyes were rolling back in his head, he was having more seizures, and we were told by the doctor's emergency line to call 911!  That was crazy!  After an ambulance ride and several hours in the ER we were told that he was probably having seizures specifically related to the fever, which they do not treat because they go away with the fever.  Our neurologist said to increase clonazepam to twice a day for a few days, and in the future he can have only 1 or 2 shots at a time.  Now a week later, his seizures are still holding at 20-40, but we have not seen any more severely decreased days.  This morning we increased Lamictal from 4mls to 6mls.  I'm excited to see what happens now!  This is the first medicine that has actually brought the number of seizures down!  We still have a long way to go before he is at the max dose, so I'm praying and fully believing that Lamictal is going to wipe the seizures out for good!  Please pray and believe that with us.

That pretty well brings us up to date. We are very much enjoying our beautiful new house.  Again, if you can help our kitties, or know someone who can, we would be so thankful!  They are both loving, sweet cats and we want the best for them!

Less Seizures!

This morning when I got Levi out of bed and reached for the notebook I keep his seizure count in, I noticed that yesterday he only had 19 spasms and 9 ticks!  That's amazing!  So today even though we were out and about, I made sure I watched him as closely as possible, and as of right now (8pm) he's had 27 spasms and 2 ticks!  It's amazing!  Please continue to pray that all these seizures will stop completely!  We are certainly feeling all the prayer and thank you all for remembering Levi.  We are praying special blessings on you as well!

Progress and Neurology Appointment

Exciting news!  Earlier this month we nominated our awesome neurologist, Deepti Chrusciel, for the St. Luke's Faithful Healer Award, and she won!  She is so very deserving of this!  It's a great honor, only 2 doctors and one resident receive this award each year.

We did have a neurology appointment yesterday, but Dr. Chrusciel was not in clinic, so we saw another resident, and Dr. Arun, who we like very much.  We will continue to decrease Banzel until we are completely off of it, and continue to increase Lamictal every two weeks.  We didn't make any changes right now, but are supposed to call in two weeks and discuss beginning to wean down either phenobarbital or keppra.  I will definitely be glad to see him come down off some of this medication!  He takes 5 meds in the morning, 7 at night,  and gets either a laxative or vitamins with his afternoon meal.  At this point he is taking: Phenobarbital 8 mls once a day; Klonipin (clonazepam) .125 ml once a day; Keppra 1.5 mls twice a day; Topamax 6 pills (90 mg) twice a day; Banzel 1/2 pill twice a day; Lamictal 2 mls twice a day; Nexium 5 mg twice a day.  That's quite a list!

We are still seeing progress as we come down off Banzel!  Levi is doing an awesome job of holding his head up.  We are noticing that when we pick him up, he catches his head from falling back, and it doesn't flop forward like it used to.  He is listing to the right a lot, but it seems like he's bracing his head on his shoulder.  For support maybe?  He is sitting up more.  Becky, our vision therapist, brought a Bumbo chair yesterday and, although we had to roll some blankets for support, he seemed very comfy and liked sitting in it.  Today our OT, Diane, tried some different things for support that also worked very well.  We have been feeding him in his highchair now, at least for breakfast and lunch, and this afternoon he sat in it and watched Nick Jr for nearly an hour while I got some chores done.  He only let his head drop forward once!  Also in OT today, Diane made some splints for his elbows so they can't bend while we put him in crawling position so he can bear weight on his arms.  As many of you know, his arms have been very tight.  He really hates this, but he only has to do it for 2 1/2 minutes, and the difference in his arms after such a short time is amazing!  He's not nearly as tight, and is moving his arms much more, particularly his right arm.  Today he actually brought his hand up to his mouth/face and held it there for a long time.  He usually only  has his hand by his face when sleeping on his stomach, so this is huge! He has also started moving the index finger of his right hand.  I'm so excited to have good news to report, and to see him moving forward!  Thank you for the prayers, we definitely are feeling them!  Please continue to pray for Levi!

Second Banzel Decrease

So last night we decreased Banzel for the second time.  Since Banzel had no effect until it made the seizures worse, I'm thrilled to get him off of it as soon as possible.  We were in the process of decreasing Keppra when we first began Banzel, and were seeing some wonderful progress developmentally, such as better head control and more movement in Levi's arms.  As we increased Banzel that went away.  However, it is beginning to come back!  In the last few days Levi has been working to hold his head. Yesterday I had some running to do and when I got home, I held my arms out and told him to come to me, which usually gets no reaction.  But this time he tried to move his arms, and was leaning forward to get to me.  What a sweet, sweet thing!  Also, today in therapy Levi was looking at a blue ball, and even moved his hand to touch it a couple times! We are now on 1/2 pill twice a day.  Next week we will go down to 1/2 pill once a day, and then we will be done!  We have a neurology appointment tomorrow afternoon, where we will discuss adjusting his medications.  I expect that we will begin weaning Keppra again.  Meanwhile we still have a week and a half before we can increase the new med, Lamictal.  Please keep Levi in your prayers for NO seizures, and developmental progress!

Our Video Testimony about Levi's Healing

Thanks to our friend Zach from Enjoy Church (enjoychurch.tv) for this awesome testimonial!


http://www.youtube.com/watch?v=6Rn0xxx-dKM

Smiles and a Kid Cart

Thank you for all the prayers.  We have definitely felt them today!  Levi woke up this morning with smiles, and he's been holding his head better.  It's been a while since he's done either of those things.  The seizures have been much more mild today as well.  They are not as long, or as violent.  Thank God!

The physical therapists brought a kid cart over for us to use today.  It's pretty neat. It's like a stroller, but it supports the body all the way up to the head, so he can sit in an upright position.  It has a strap that goes across his forehead to keep it from flopping forward, but he learned how to wiggle out of it, and now won't keep it on at all.  A bit frustrating?  Maybe, but for one thing, I think it's pretty smart to learn how to get out of it so quickly, and for another, even without the strap he held his head up on his own!  It did occasionally flop forward, but since the cart supports the torso, it didn't flop too far over, and he was able to lift it back up.  Levi did this many times today.  That is awesome work for his little neck and strengthening those muscles!

Tomorrow is a big fun day at Shaw Park in Clayton sponsored by the Center for the Blind and Visually Impaired, and Delta Gamma Center for Children with Visual Impairments.  Our therapist is from Delta Gamma (we love her!).  They will have food and games, and most importantly, we will be able to meet other children and parents with the same and similar diagnosis as Levi.  He has Cortical Visual Impairment and Alternating Exotropia.  We are so looking forward to meeting others!

We will be taking the kid cart to the picnic so we can see how Levi does, and how it compares to our own stroller.  I think he will like sitting upright instead of always being reclined.  We will take lots of pics and post them later.  Thanks again for your prayers!

Starting Lamictal

Today we finally got all the issues ironed out at the pharmacy (they lost the prescription!) and started Levi on Lamictal.  Each time we started a new med before I was excited, but now I'm just tired.  I know it's all in God's timing, and He knows the big picture, but I'm really, really ready for the seizures to stop.  It's hard to watch the little guy go through that over and over again, especially when he makes noises that sound like he's hurting. He's a little trooper though, thank God!  I know God is good and He will bring Levi (and us!) through this just as He has everything else.  Just one more testimony to the glory of our God!  Please continue to pray that the seizures go away very soon!  Here are some pics I've been meaning to put up.

Sleeping while Mommy works.

Levi and Daddy at Hazel Dell Civil War Reenactment.

Sleeping in Dr's office before being whisked away on the ambulance.

Sleeping just outside Cardinal Glennon as we wait for Daddy to bring the car.

Levi and Mommy at the Bon Jovi and Journey tribute concert last month.

Wearing the cute shirt big brother Tommy brought me :)

Snoozing in cute fall clothes.

Seizure Scriptures

I've decided to study what the bible states about seizures.  Please join us in looking these over and praying for an end to the seizures Levi has been suffering through.  The last couple days he has had seizures back to back, some pretty strong.  Thank you for thinking of us and keeping Levi in your prayers!

Mark 9:17-29 Coming to the disciples, he saw a great multitude around them, and scribes questioning them. 15Immediately all the multitude, when they saw him, were greatly amazed, and running to him greeted him. 16He asked the scribes, "What are you asking them?" 17One of the multitude answered, "Teacher, I brought to you my son, who has a mute spirit; 18and wherever it seizes him, it throws him down, and he foams at the mouth, and grinds his teeth, and wastes away. I asked your disciples to cast it out, and they weren't able." 19He answered him, "Unbelieving generation, how long shall I be with you? How long shall I bear with you? Bring him to me." 20They brought him to him, and when he saw him, immediately the spirit convulsed him, and he fell on the ground, wallowing and foaming at the mouth. 21He asked his father, "How long has it been since this has come to him?" He said, "From childhood. 22Often it has cast him both into the fire and into the water, to destroy him. But if you can do anything, have compassion on us, and help us." 23Jesus said to him, "If you can believe, all things are possible to him who believes." 24Immediately the father of the child cried out with tears, "I believe. Help my unbelief!" 25When Jesus saw that a multitude came running together, he rebuked the unclean spirit, saying to him, "You mute and deaf spirit, I command you, come out of him, and never enter him again!" 26Having cried out, and convulsed greatly, it came out of him. The boy became like one dead; so much that most of them said, "He is dead." 27But Jesus took him by the hand, and raised him up; and he arose. 28When he had come into the house, his disciples asked him privately, "Why couldn't we cast it out?" 29He said to them, "This kind can come out by nothing, except by prayer and fasting."





Mark 5:1-20 1 They came to the other side of the sea, to the country of the Gerasenes.[a] 2And when Jesus[b] had stepped out of the boat, immediately there met him out of the tombs a man with an unclean spirit. 3 He lived among the tombs. And no one could bind him anymore, not even with a chain, 4for he had often been bound with shackles and chains, but he wrenched the chains apart, and he broke the shackles in pieces. No one had the strength to subdue him. 5Night and day among the tombs and on the mountains he was always crying out and cutting himself with stones. 6And when he saw Jesus from afar, he ran and fell down before him. 7And crying out with a loud voice, he said, "What have you to do with me, Jesus, Son of the Most High God? I adjure you by God, do not torment me." 8For he was saying to him, "Come out of the man, you unclean spirit!" 9And Jesus asked him, "What is your name?" He replied, "My name is Legion, for we are many." 10And he begged him earnestly not to send them out of the country. 11Now a great herd of pigs was feeding there on the hillside, 12and they begged him, saying, "Send us to the pigs; let us enter them." 13So he gave them permission. And the unclean spirits came out, and entered the pigs, and the herd, numbering about two thousand, rushed down the steep bank into the sea and were drowned in the sea.



14The herdsmen fled and told it in the city and in the country. And people came to see what it was that had happened. 15And they came to Jesus and saw the demon-possessed[c] man, the one who had had the legion, sitting there, clothed and in his right mind, and they were afraid. 16And those who had seen it described to them what had happened to the demon-possessed man and to the pigs. 17And they began to beg Jesus[d] to depart from their region. 18As he was getting into the boat, the man who had been possessed with demons begged him that he might be with him. 19And he did not permit him but said to him, "Go home to your friends and tell them how much the Lord has done for you, and how he has had mercy on you." 20And he went away and began to proclaim in the Decapolis how much Jesus had done for him, and everyone marveled.