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Monday, November 28, 2011

Sick Baby :(

Well, it turns out that Levi slept all day yesterday because he's sick, not because of the clonazepam. We finally woke him up at quarter after five and could immediately tell he was feeling poorly. His eyes were watery and squinty, and hurt when in bright light. His temp was 100.2. He was able to take his meds and some food and went right back to sleep. The poor little guy kept whimpering, it was so sad.  He woke up about an hour later extremely cranky, unable to get comfy. He did drink 4 ounces of pedialyte, which seemed to help.  Tylenol, unfortunately, did not.  At 8:30 I gave him ibuprofen, and within half an hour he was in a peaceful sleep and was able to sleep most of the night.  This morning he did eat well even though it's obvious he still feels rotten.  His temp is down to 99, but I can tell he still feels feverish.  He enjoyed a warm bath, a cuddle with Moga, and is now again sleeping.  Hopefully when he wakes up he will be feeling better!  Please keep him in your prayers.

Sunday, November 27, 2011

Exhausted Little Baby!

Levi stayed up until about 9:00 last night and slept all night.  He ate a good breakfast, and only took a short nap at church.  As soon as we got home, around 10:30, he fell asleep.  It's now 4:00 and he's still napping!  It must be the double dose of clonazepam, and when he gets used to it hopefully he won't be so sleepy, but it's frustrating. We went down on Topamax so he would start eating better and be more awake and alert.  I'm just ready for him to want to cuddle and play.  On the bright side, he should be well rested for bowling tonight!

Saturday, November 26, 2011

Lunch, Please!

Levi is eating much better! He ate a normal breakfast, and as I said before it's been difficult to even get him to take a bottle between breakfast and dinner. Today he ate a quarter jar of chicken and sweet potatoes baby food (it was his first time. He liked it!) and a couple bites of pumpkin pie with a couple ounces of formula/rice cereal.  His little eyes popped open at the first bite of the pie. He was very interested! For dinner he finished the jar of chicken and sweet potatoes, half a jar of prunes, and a 6 ounce bottle!  It's nice to see his appetite coming back so soon and with such a small change in Topamax!

He's been super tired and floppy today, probably from the double dose of clonazepam. Hopefully tomorrow he will be more awake and alert.  I'm looking forward to a more awake and happy baby!

Friday, November 25, 2011

Sleepy Day

Levi slept all night again!  He was sleepier today than yesterday, but even so he didn't sleep that much.  I think it will take him a few days to get used to the med changes.  He's been super cute, as usual.  This is the second day he ate a meal for lunch! Almost half a jar of baby food and 4 ounces of formula/rice cereal mixture.  He's been floppy, but I think it's because he's so tired.  Poor little guy.  He's snoozing in the chair with Dad right now.

Thursday, November 24, 2011

Med Changes

We had a visit with the neurologist yesterday and were very pleased with the outcome.  He's gained so little weight in the last few months that they decided to take Topamax down from 6 pills twice a day to 4 pills twice a day, over the next two weeks.  While we are doing that, we need to double clonazepam in the evening to help stabilize the seizures.  We began the wean last night, and he slept all night for the first time in a couple weeks.  He was much more alert today and didn't take as many naps.  Even more exciting, he actually ate a complete meal for lunch!  It's been difficult to even get a couple ounces of formula down him between breakfast and dinner, and today he drank 7 ounces of formula, 1 ounce of pedialyte, and his first Thanksgiving meal, which consisted of dressing (he didn't like it!), Texas taters, sweet potato casserole, and cranberries!  That's a lot of positive changes much earlier than we expected!  Our neurologist is consulting the epilepsy expert and will contact us on Monday with a new med plan. It looks like we may be starting Depakote soon.  Please pray for wisdom for us and the doctors as we make decisions concerning new meds and weaning current ones.

We had a wonderful Thanksgiving, I hope you all did as well!  As always, we thank you for your continued prayer and pray blessings on you as well!  Happy Thanksgiving!

Tuesday, November 22, 2011

Looking Back...

There's just something about a baby in the house at Christmas.  I've been so excited that we put our tree and decorations out over the weekend.  I know Levi won't remember this Christmas, but I certainly will.  For months I had a hard time even thinking about last Christmas. He was so very sick, and I was just beginning to realize that something was definitely not right. It was only 2 days later that we were rushed to Cardinal Glennon by ambulance.  Thinking on that time has always filled me with such a feeling of sadness, and guilt, because I feel like I should have known something was wrong well before that.  But now on this side of it, I can look back on the path God was leading us, and know that everything happened in the way it was supposed to, according to God's plan.  It's been a hard road, but as we are coming around to Christmas again, we are in a much better place.  Yes, Levi does still have some issues, but we are working through them and this, too, is in God's plan.  Levi is healthy and happy and here with us, thank God!  So it is with relief that I cast aside the sadness and pain of the past.  I can enjoy the present, and look forward to the future with hope and excitement of what the next year will bring.  Whatever it is, I know the Lord will continue to hold us in his capable hands, and light our way.


Thursday, November 17, 2011

Two Doctors, Both with Great News!

So we've had to make a couple trips to Cardinal Glennon again recently, but this time just for routine checkups. First, we saw the neurosurgeon. We learned that the last CT scan that was done a couple months ago showed a marked improvement in his brain, which is amazing news! His shunt is working properly, his head circumference is normal, and all is well from a neurosurgery standpoint! Come back for a checkup in 1 year! Wonderful!

Next we saw the orthopaedist. As you know, Levi had a spica cast for 6 weeks to correct hip dysplasia, and has been in a rhino brace for the last 4 months. X-rays showed that his hip is doing very well and the bones are coming in as they should be. Although still a bit shallow, his hip is very sturdy and feels great. So, he still has to wear the brace at night, but he has no restrictions during the day! He doesn't need to use the stander, which he hates, so that's a good thing as well!

Thursday, November 3, 2011

Riding in the Cart

Levi has graduated into a larger carseat. It's still rear-facing, but accommodates his longer length. I usually keep the old carseat in the car for when we go to the store, so he can ride in the cart.  Well, today I forgot it, so we decided to try sitting him in the cart. It was too cute!  Fortunately I had extra blankets with me since it was raining, and we propped him up.  He loved it!  Moga bought him a little neck pillow so he would be comfy. It really helped give him support. Plus, it's very soft, and he kept rubbing his little cheek against it, then tried to taste it. LOL  He was so funny!  Here are some pics of the fun:




Wednesday, November 2, 2011

Having Fun!

I raked up some leaves this afternoon and thought it might be nice for Levi to play in them. It was a wonderful sensory experience! The smell of the leaves, hearing them crunch and squeezing them between his fingers. He really seemed to like it.  I laid him in the pile and he sank in farther than I expected...he's getting to be a big boy! It was fun for both of us.  Afterwards he had a warm bath and put on his new Christmas jammies and snuggled in for a nap.  All in all it was a great day!



Amazing Progress!

Yesterday in vision therapy, Levi had a huge breakthrough!  He was laying on his back, with one large pumpkin light to his right, and a strand of smaller pumpkin lights on his left. Near his hand was a huge button to push that turned the lights back on when they went off.  Levi raised his right hand and pressed the button 3 different times! He didn't do it to turn the lights on, as they were already on at those times, but he is learning to use his hands and arms! Then, and even more amazing and exciting to me, he raised his left hand to touch the lights! He did that twice as well!

Then just now, as he was laying in bed on his tummy waking up from a nap, he was trying to lift his head up and look around. He does that sometimes, but not very effectively because he doesn't like to get up on his elbows. I have tried to help him in the past by putting his elbows under him, but he always slides them down, "chicken wing" style. I went ahead and slid his elbows under him, and he lifted his head all the way up and stayed on his elbows for a few minutes!!!  This is HUGE!!  I got a picture of it :)  Thank you for the prayers, please keep them coming!  Yay, Levi!!!