Good Times

Last week was a good week.  Levi has some fussy times before bedtime due to teething, but compared to the way he used to scream, this is like a walk in the park.  Poor little guy, his bottom middle gum is so white that tooth should be shooting through any minute, and his canine and molar areas are a combination of bumps and very swollen gums.  His whole little mouth must hurt.  He's learned to chew on the bottle nipple.  It's so cute!  No matter how hard I try, though, he refuses to take a teether.

I've still been holding the spoon and bottle in front of him during mealtimes so he can focus on it before I put it in his mouth.  He seems to be looking at it and recognizing it faster than before, and his eating has gotten even better than it was.  It's so adorable to watch him chew :)

Friday we visited the ortho doctor and learned that Levi will need the brace until he is crawling and weight bearing on his legs on a regular basis.  Even then he will need to wear it at night.  I was disappointed by this news at first, but Dr. Puryear told us that the x-ray showed that Levi's hip is looking excellent.  He said we don't have to use it strictly 23 hours a day, which also made me happy.  Sometimes I just like to hold him without that darn thing on.  BUT we are still being pretty strict about it.  I never want him to have to go through having a Spica cast again, and I'll do whatever I need to so we can avoid it.  We have begun working with the therapists this week on weight bearing exercises.  Levi continues to improve with his head control.  He's really working on it all on his own!  Good job, Levi!

This weekend was his first camping trip, and we had a McDonald family reunion.  Many of us camped the whole weekend, and it was great to relax and catch up with everyone.  It sure was hot, though!  Thank God for air conditioning!  Levi did great.   He loves the sun and warm weather, and this weekend was no different.  He enjoyed being passed around and even slept all night!  He must have been tuckered out.

Here are a few pics of the weekend:

Cory and Levi

 Levi in his bonnet, as Aunt Shell calls it :)

 Sophie, Billy, Lisa, and Mary

 Jeramiah, Katie, and Daren

 Mary and Levi

Good Weekend

We had a nice, relaxing weekend.  Sunday we went to church, which is always wonderful, and out to dinner with family for my Dad's birthday.  It's always great to get together!  Levi was so good, he chilled all through church and dinner.  He has been having crying spells in the evening again, but he's not screaming, and they last (usually) for less than an hour.  I'm pretty sure it's his teeth.  He has lots of bumps and the gums over his molars are hugely swollen.  Poor little guy!  We got him a little blow up duckie bathtub, which is great because he can lean back against the tail and it supports his neck.  He had his first bath in it tonight and loved it!  It's easier for me, too!  I had a makeover today.  My hair is curly and it's been so humid lately it just keeps getting bigger and bigger.  Well, last night I was ready to shave it all off my head, so today I went to my trusted friend and hairstylist and got it cut short and colored.  This is huge for me because I never cut my hair short!  I have to say I really like it!

That's all I have to report.  Seizures are about the same, as is everything else.  Life is pretty good :)

Duckie Bathtub

 My New Hair

Sad News for Baby Caitlyn...Keep Praying!!!

Baby Caitlyn's parents have received bad news and need your prayers so much right now!  Pray for peace for her family, but more important pray for a miracle for Caitlyn!  We know it can be done, Levi is living proof that the Lord heals!!  Let's all join together and believe her healing is done! Amen!  Here is the update from her mom...

Was told today that they are weaning Caitlyn off of ECMO this week and then stop all the treatment if she didn't do well after being off ECMO. Her lungs aren't fixed so it will not work. They said to get all my family in to see her this week because next week it will be over. She will be in my arms and if it is nice we can be outside when it happens. Please pray for her to be peaceful. and i would appreciate if the comments about how she is better off just be kept for now. Thank you to everyone who has prayed for her

Saturday

Saturdays are always fun!  As usual, we went to yard sales and lunch.  Levi was great!  We just spent a nice, relaxing day.  He had a bit of a screaming episode this evening, with some throwing up.  I think his teeth were hurting (his gums are hugely swollen).  But he's back to his calm, happy self again.  We worked on some side lying and playing at mid line.  I got a few adorable pics of that!  All in all, a terrific day!

Levi's First Swim

We had a very busy, fun day today.  Daddy went golfing, and Levi and I stayed home for therapy.  Shawnery and Mary (PT and DT) came together today, and true to form, Levi decided to fall asleep literally two minutes before they came in.  He just would not wake up no matter what they did.  Shawnery was pretty sure he wasn't actually sleeping.  I put him on my lap and bounced, and immediately he smiled.  The little turkey was totally faking it!  So we set him on the floor in a sitting position and they brought out a little piano and tapped the keys with his hands.  He fussed for a bit, until he realized that it wasn't so much work, and was actually quite fun.  From then on he did really well and completed the entire therapy session!  He "played" with some toys, and worked on rolling over.  All in all it was a very successful session!

This morning I incorporated some of the things the vision therapist taught me into our daily routine.  I showed Levi his bottle and gave him time to look at it, then put both his hands on it, and put it in his mouth.  I was so busy holding his hands in place that I didn't give him any chin support, and much to my surprise, none was needed!  He drank the entire bottle with no chin support!  On another positive note, I was reclining on the couch with him facing me, his head on my chest, and he brought himself to a sitting position!  Tommy was sitting behind him, and as he talked to him, Levi looked around to find him, and proceeded to sit up again!  The child amazes me!

Then we went swimming with Aunt Mishy and he wasn't too sure about that cold water, but once he got used to it he loved it!  So much so that he fell asleep.  Too cute.  He was so tuckered out that he slept while I dressed him, while we went out for ice cream, the car ride home, and a good hour after we got home.  A very busy day, but so much fun!  I took pictures of his very first swim!!

Vision Therapy!

Levi was a happy little guy today!  The vision therapist, Becky, came by for her first visit today.  She said he uses his peripheral vision quite a bit, and exhibits a pattern called "look/look away".  This means that he will use his peripheral vision to look at something, then look at it directly, then look away.  When he looks away his little brain is processing the information that his eyes have just seen.  She said that the more familiar an item becomes, the quicker he will be to look at it, and the longer he will focus.  She used some of her things, and then his little giraffe that used to hang over his bassinet, and he did look at the giraffe more quickly and longer.  So interesting!   He scored a 2.5 on a scale of 1-10.  Becky said that means he has emerging skills, and that it's a pretty good place for him to be at this point.  We will be working on holding objects in front of him and giving him time to look at it, while not speaking too much.  This will allow him to concentrate on looking instead of listening.  I'm really excited to learn this new information, and we have already worked some of this therapy into his daily routine.  Becky was very easy to get along with, informative, and we liked her a great deal.

Levi and I met my sister Misty (aka Aunt Mishy) for dinner, and then she kindly took him home with her so I could go grocery shopping.  We are taking him swimming tomorrow, so I got him a cute reusable swim diaper that looks like a speedo (too cute!) and a neat double swim ring, one side for him and one for me, that has a headrest for him. I liked that one because he still doesn't have control of his head, although I see improvement every day!  He has been a happy little guy for the most part, and I am so thankful for him!

Good Day

We had a good day today.  I got some stuff done around the house, and Levi was very content today.  Still having seizures but the amount seemed to be down quite a bit.  He slept in his crib for the first time in over a month!  The cast was so uncomfortable he spent naps and bedtime in the beanbag, which he still loves.  Maybe I'll get to sleep in my bed too. lol  He has been doing great with head control!  All of a sudden he's been working on controlling his head, and this is something he has started all on his own! He just keeps amazing me!  What a wonderful little guy!  Our vision therapist comes out for her first visit and assessment tomorrow, and we are very much looking forward to that!  I'll let you know how it goes!

Levi napping in his very own bed :)

 Moga and Levi cuddling :)

 All worn out from OT, fell asleep with therapy toys.

 Levi's first 4th!

So Sweet

Well I never did actually count his seizures, but I think they are about the same.  He does seem to have less episodes, but the number of clusters within an episode are sometimes more than before.  I talked to our regular neurologist today and she gave me her email...hurray!...so we won't keep playing phone tag all the time.  This is great because I need to be in contact with her a couple times a week.  We decided to go up to 2 mls of Keppra.    Although Keppra didn't take away the spasm seizures before, we are hoping that the increased dose, in conjunction with Topamax, will make a difference.  If not, our next step will be Sabril, a medication that has been recently approved in the US, but has been used for many years in Europe and Canada.

The OT came out today, and even though Levi had a good nap before she came, he slept through half the session.  She was able to work with him on sitting up (now that he's out of that cast! yay!), a little bit of weight bearing, body recognition, stretching, etc.  He wasn't too happy about it, and was comforted in Moga's arms where he fell asleep.  We made the follow up appointment for Levi's hip for the 15th of this month.  I'm hoping that the doctor will decide we can keep his brace off except for naps and bedtime.  He's supposed to wear the brace 23 hours a day for 6 weeks, but his hip healed so well in the cast, my hope is that he will continue to move along more quickly than expected.  It's such a joy to hold him without a cast/brace even for such a short period of time right now, I can't wait for it to be gone for good!

He's been so very sweet and good lately!  I think we've finally got all his issues under control except those darn seizures.  Most of the time he's content to be held, or hang out in his crib or beanbag, or whatever else we want to do.  Tonight we went with my mom to a quarter auction.  It was my first one and very much fun!  Levi was so wonderful!  He sat in Moga's lap and cuddled with her and smiled at her.  It's such a far cry from before when he used to scream all the time that I just find myself thanking God over and over again.  I'm so glad those days are over!  He's such a joy these days, and he seems to be making progress again.  I'm believing pretty soon he will start learning and developing at a quick rate and make up for lost time.  He's such a smart little guy!  Well, that's all I know for now.  Will keep you posted :)

So Far So Good...

Levi's been so good all weekend!  Very calm and content.  We were going to go to the fireworks display last night, but he was running a low grade fever (I think from teething) and we didn't want to take him out in the heat, so we stayed home and relaxed.  We gave him another bath in the big tub and he's just so cute!  He relaxes as soon as his little body feels the warm water.  I usually dread washing him up and leave it till last because he cries, but last night he let me wash his entire body, including his face and hair, without even a peep.  He didn't cry until we took him out. lol  He does love his bath!  I'm wanting to take him to the pool soon.  The doctor said it would be okay and I'm sure being in deeper water will feel wonderful on his little leg muscles.

He is still having seizures, although they seem to be decreasing even more.  They seem to be clustering more, but he has fewer episodes.  I will probably count them tomorrow so I can give our regular neurologist a good idea of what's going on when I talk to her Tuesday.  We are going to a bbq at our friend Kyle's house this evening and are looking forward to having a fun time! 

Topamax to the Max

Finally talked to a doctor today now that we figured out my cell phone wasn't ringing and every call was going straight to voicemail. The doctor we usually deal with was out sick, and the consensus of two other doctors was not to go up on two meds at once (I understand where they are coming from, but the small increase in Keppra cut the ticking seizures down by more than half, and Topamax doesn't work on those seizures, and vice versa). They wanted to go up on Keppra, but we have done that before and it just didn't work, only made Levi super crabby.  He's at 5 pills twice a day of Topamax, and they allowed my request to go up to 6 pills twice a day, but that is the final increase and we are at the maximum amount of Topamax that he should have.  So if this doesn't work we will need to start a new med.   My prayer is that this will work and STOP the seizures!  They are much reduced, and seem to be even better since the shunt adjustment Wednesday.  I believe this jump in Topamax will take them away!  Please pray with us that this increase is what's needed to finally stop the Infantile Spasms!  Hope everyone has a wonderful holiday weekend!