Another Busy Day

I think today was even more crazy than yesterday.  I woke up early so I could pull everything out of the laundry room and get ready for the new super awesome washer.  Levi usually wakes up off and on anywhere between 6 and 7, but this morning he slept clear through until 8.  I fed him and he fell asleep until I woke him for therapy at 10:15.  Afterwards he fell asleep and slept until after 2!  Poor little guy was just exhausted.  Another meal and another nap on Moga's lap until dinner at 5.  Then we went to a quarter auction with Moga, which was a lot of fun, and he was awake for the majority of the time there.  Mom and I both won a certificate for a jewelry booth that happened to be owned by a lady I used to go to church with.  We each picked out a gorgeous bracelet, and went home and Levi drifted off again.  He's been super tired, but happy and content.

He had developmental therapy today with Mary.  They played in side-lying position, and with some musical light up toys.  He was awake and alert through the entire session.  He seemed very interested in everything Mary was doing.  His head control continues to get better, and he requires no chin support when drinking his bottle now!  Way to go, Levi!  I'm thrilled to see him making progress!

As far as the seizures go, I'm not sure I got a good count today either.  He seemed to have quite a few this morning, but then this evening he didn't have as many as usual.  I'm ready to see them go away for good, though!  Tomorrow we have a blood drive at church that's been dedicated to Levi.  We'll be there from 10 until 2.  We're looking forward to it!

Seizure Diary - Spasms - 52 in 23 episodes; Ticks - 9, two of which were head ticks without stiffening.

Busy Day

Our washer went out a couple days ago so we spent our morning shopping for a new washer.  We got an awesome deal at American Furniture!  Their St. Louis stores are closing, and we didn't really expect much from the liquidation sale, but it was actually great.  We got a high efficiency front load washer for the price we expected to pay for a basic top load model!  Levi was so good all through our shopping and lunch!  It's days like today that I remember the not too distant past when we didn't take him out because he was crying all the time.  I thank God that those days are over!  He's a happy little guy now!  Then we went to Aunt Mishy's house to enjoy Moga's homemade lasagna, salad, and garlic bread.  Yum!  And of course Levi just loved being cuddled by everyone there!  He's had a decent amount of sleep today, and did not have a crying spell again tonight!

The seizure count I have for today is very low, but I don't know how accurate it is because of all our activity today.  I tried to pay attention, but with all the shopping, cleaning, and eating it was difficult. lol  I'm really praying that the count is so low because the Sabril is starting to kick in!  That's what I'm going to believe!  By the grace of God Sabril will knock these seizures out once and for all, and quickly!

Tomorrow a special little boy named Parker will be born, and I'd like to ask you all to please pray for him!  He has undergone three surgeries in utero, and his chances of survival are 50/50.  We know God can do well over what we can even imagine (Levi and Caitlyn are proof of that!) and we are believing the same will happen for this little peanut.  Please keep Parker and his family in your prayers on his very special birthday tomorrow and in the weeks to come!

Seizure Diary - Spasms - 33 - I lost count of episodes but I would guess around 20 or so - Ticks - 3

Playing in side-lying position.  I don't mind this kind of therapy!

 Me and my big brother Tommy.  I love my brother!

So Alert

Levi took such a long nap this afternoon that he's been awake the whole rest of the evening!  It's 10:00 and he's still up. lol  He's content to sit with me and watch tv or whatever I happen to be doing.  He slept right through his afternoon feeding, but definitely made up for it at dinner!  He's had a great day!  His seizures are slightly better than yesterday.  I have noticed that they are not clustering.  I've also noticed a few times where he starts to go into a seizure but then stops before it happens.  That's pretty good for only being on the medicine for two days!  Well, he's calling me, so I'm going to cuddle with him and hopefully he falls asleep before I do. LOL

Seizure Diary - Spasms - 50 in 22 episodes; Ticks - 9 plus one very strong one at 5am this morning.

A New Day

Since Levi was so clingy yesterday, I was a bit nervous about how he would sleep last night, but he did wonderfully!  He woke up about 4:30 am for a diaper change and took a bottle, and went right back to sleep until about 7:30.  Can't complain about that!  I guess he really was just having an off day yesterday.  He's been his normal, content self today.  He seems super relaxed, and I know he was fighting hard to stay awake!  We worked on some hip weight bearing exercises, and he just couldn't fight any longer. lol  It's a very comfy position.  He fell right asleep and is still snoozing in his beanbag.  He needed a good long nap.  I'm sure many of you have probably noticed that I've added a seizure diary at the end of my posts.  This really is just for my notes, so I can have a daily log while he's on Sabril.  I'll wait until this evening to post a final count.

Sabril Has Arrived!

Since I didn't speak with the people from Sabril until yesterday afternoon, I was very impressed when it arrived before 9:00 this morning.  I was thrilled to begin it right away.  Unfortunately shortly after he took it he became a bit cranky.  He was fine as long as someone was holding him, but he did not want to be put down.  Usually he is happy hanging out in his beanbag or crib for a while, but not today.  I am praying that this is not from the Sabril, or if it is that it will quickly go away!  This is just one more medicine that causes sleepiness, and I'm sure it's made him feel drowsy.  It could also be from teething.  Or a combination of both.  Maybe it was just an off day. I was exhausted today as well.  I really hate this extreme heat!  I love to have the windows open and feel a fresh, warm breeze, but when the temps get this high you can only closet yourself in the house with the AC on full blast and hope for the best.  I hope it cools down soon!  I would love to start taking Levi on walks.

We got a late start on the day, and with Levi wanting to be held, I didn't get a whole lot accomplished.  I wouldn't have gotten anything accomplished had it not been for Miranda and Mom.  Miranda came over and cuddled with Levi while I made pot roast, and after dinner while I took Miranda home Mom fed Levi, gave his meds, and bathed him.  I finally got him into a decent sleep and he's snoozing in his beanbag.  I hope tomorrow he's back to his content self.  Maybe we'll both be back to normal tomorrow. lol

Seizure Diary - Spasms - 54 individual in 14 episodes; Ticks - 9?

Update on Baby Caitlyn...Keep on Praying!!

For those of you who haven't read my previous posts about Caitlyn, you can read "Sad News for Baby Caitlyn" to get a background.  Tuesday she underwent surgery to have the ECMO tubes removed, and the doctors could do nothing else.  They did not expect her to last very long after the surgery.  Well, that was a week ago, and not only is she still with us, she is moving toward good health!  Praise GOD!  Her oxygen has been turned down, and yesterday her breathing tube was removed!  Today she had to have a cpap for a bit of breathing help, but she is still doing wonderfully!  Thanks to everyone who has been praying for her and her family.  Keep the prayers coming!  She is living proof that as long as there is breath left in us there is hope!  She is a true miracle, and I'm so glad I've been able to witness the wonders that the Lord is working in her!

Sabril Due Tomorrow!

I just spoke with the people from Sabril and they are shipping the med out today for delivery tomorrow!  I am so very excited to begin this!  I've been tracking Levi's seizures since yesterday so I can have a good baseline of before and during Sabril.  He had a lot of seizures yesterday, but thankfully not quite as many today.  Please pray and believe with us that Sabril will stop the seizures quickly and for good, and also that there will be no negative side effects, specifically blindness or loss of peripheral vision.  Thank you all for your prayers!!!

Levi had physical therapy today and we spoke a lot about weight bearing so that he can stop wearing the brace except for bedtime.  We've asked the ortho doctor to write a prescription for a stander and AFO's.  The AFO's are ankle braces that keep the feet flat and support the ankles while standing, and the stander is a device that supports him so he can practice standing and get some healthy weight bearing in his hips.  We also went over a couple positions that promote weight bearing for his hips that I can do now.  To be honest, I've been a bit hesitant about doing those exercises this week because I didn't know if I had his legs in the right position.  So I showed the PT what I was doing and she confirmed that I was doing it correctly.  What a relief!  The sooner he bears weight on his hips consistently the sooner he can be out of that brace for the majority of the time!

It feels so good to be moving forward in more areas.  I feel like the worst is behind us, and we don't have much farther to go to get rid of the seizures and brace.  Life is good!  Levi has been happy except for the occasional teething pain.  The poor baby was drooling nonstop this morning.  Hopefully those teeth will begin popping through soon.  There's not a spot on his little gums that isn't either a bump or very swollen.  All in good time, I guess.

Seizure Diary - Spasms - 64 Individual spasms in 21 Episodes; Ticks - 8

Church

Today was the first day since Levi got the Spica cast over two months ago that he went to church with bare legs.  He even wore his little blue Nike shoes.  He's so cute!  The service was awesome as usual, and we had a great time visiting with family and friends.  Levi has been sleeping a lot again today, but he's been pretty happy.

I counted his seizures today, and he had around 85 individual spasms within close to 20 episodes, and around 7 of the stiffening/ticking seizures.  I don't like counting the seizures, but I wanted to get a good baseline before we start the Sabril this week.  I'm believing we are going to notice substantial decrease in seizure activity very quickly, and that the seizures will be completely gone real soon!  Please continue to keep Levi in your prayers.  Our prayers go out to you as well!

Seizure Diary:  Spasms - 88 Individual in 19 Episodes; Ticks - 7

Tired Baby

Poor little Levi was interrupted during every nap he tried to take yesterday.  He was so tired that he fell asleep right after his supper and bath!  We rocked for an hour or so, and I was sure that he would wake up when I put him back in the rhino brace and put him to bed (or actually, beanbag lol), but he didn't!  He slept all the way to 3am when he woke up for a diaper change and bottle, then he was out again.  I woke him up early so he could eat before we went yardsaling, and we stopped at Provision Living to visit my mom and some of the residents there.  He enjoyed it!  He was awake and adorable through lunch, but once we got home he crashed.  Again he woke up to eat and he's been snoozing since!  Poor little guy must be exhausted.  I think it's a combination of the heat, having his naps interrupted, and being awake so much more this week. 

I heard from the people from Sabril today.  They said they need one more form from the doctor's office, which they can't get until Monday.  I'm sure we will speak with them and get it finished Monday and hopefully start the medicine Tuesday.  Please pray and believe with us that this will STOP his seizures!  I believe it will! 

For those of you who have been praying with us for baby Caitlyn Bishop, I have good news!  She was not expected to make it after her surgery Tuesday, but she is doing awesome!  Her tests are coming back amazing!  The heart blockage she's had since birth has disappeared!  Her mom said the doctors have told her they have only seen 2 miracles of this caliber in 30 years!  Praise God!  I don't know how anyone could hear this story and not believe in God.  He is so good, and He heals, we just have to have faith in Him and believe.  I'm so happy for her family!  Please keep them in your prayers.  Have a wonderful weekend!

Sabril (Vigabatrin)

We just came from Cardinal Glennon, where we signed the paperwork for starting Sabril.  This is a medication proven very effective in stopping Infantile Spasm seizures.  It has only recently been approved in the US, but has been used in Europe and, I believe, Canada for many years.  We are very excited about beginning this!  I have very good feelings that this will STOP Levi's seizures!!  The paperwork will be faxed to them today or tomorrow, and we will hear from them probably tomorrow, but Monday at the latest.  As soon as they verify our information they will ship out the medication. So we will be starting Sabril by next week!  This is much faster than we anticipated.  We aren't yet sure if we will continue Topomax while on Sabril, or if we will wean it down a bit or all the way.  I kind of hope we keep the Topomax, it really has helped a lot, and I would think the combination of the two would take them away quickly.  Please pray with us that Sabril stops the seizures quickly! One of the possible side effects is loss of peripheral vision, so please pray with us that Levi's vision is not compromised.  He has enough vision problems as it is!

While we were at Cardinal Glennon, we ran into one of the PICU nurses, Sarah.  This was just a God thing!  Sarah transferred to another hospital while Levi was still in the PICU, so she had no idea how well he was doing.  She happened to be there with her son, who is undergoing treatment for lymphoma (please pray for him!).  It was wonderful to see her and show her how far Levi has come since his days in the PICU.  Sarah saw him at his sickest, and she was just amazed at how big he is and how healthy he looks!  We are SO glad we ran into her!