Saturday, December 31, 2011


The following is an excerpt from my journal last New Year's Eve: "Strange, it doesn't feel like New Year's Eve.  All I can say is I'm looking very forward to a new year.  Today is Day 5.  Levi continued to seize so the doctors decided to put him on Pentabarbitol in a drug induced coma for 10 days or thereabouts.  They are working right now on placing an arterial line so they don't have to stick him for blood and meds.  The Pentabarbitol will allow his brain and body to rest and heal while the antibiotics are working to fight the infection."

Wow, it's been quite a year.  We endured a month in the hospital, dealing with the dreaded PICC line and IV antibiotics that we had to give at home, brain surgery, endless hours of daily screaming that went on for a couple of months, new seizures, 2 hip surgeries, a body cast, hip brace, several new medications that we hoped would end the seizures but only ended in disappointment and sometimes in worsening seizures, and countless trips to Cardinal Glennon to visit countless specialists.

We have been blessed by our family, church family, and friends who gathered around us from that very first day in the hospital and have always been there to love us and support us.  Tommy, who had to do without his parents and stay with Aunt Misty every night.  Mom, Misty, Shelly, Brian and Dale, who spent so many hours at Cardinal Glennon with us.  They brought us puppy chow, made homemade soup, and paid for our meals.  They spent time with us when we couldn't even walk into Levi's room, because even that small amount of stimulation was just too much for him.  We all hung out in the McDonald room, a lovely oasis where we could shower, have coffee and snacks, and just look at walls that did not resemble a hospital.  I'll never forget my favorite volunteer, Gary.  He always baked delightful snacks and cheered us with  his sweet personality.  We had many interesting discussions. (Gary, if you read this, please let me know.)  We met the most amazing nurses: Elizabeth, 3 Sarahs, Tiffany, Darby (who let me hold Levi for the first time after he came out of the coma), Marie (who saved Levi's life when he was choking on the breathing tube), and many others.  We've met other families who understand just how we feel: Jessica, Erin, Shannon, Amy.  We've been blessed with therapists who come into our home and not only teach Levi, but love him: Shawnery, Becky, Diane, Mary, and Jenny.  All his doctors are wonderful, but we feel a special bond with his neurologist, Dr. Chrusciel.  We've been in such close contact with her for so long, she's more like a member of our family.  There are really no words for the high quality of care she gives Levi!

So as I reflect on a year full of both trials and blessings, I am again ready for a new year.  I'm ready for seizure freedom, ready to watch Levi learn to crawl, and walk, and run.  It's going to be a great year!  Happy New Year to all of you!  Thank you for your continued prayer for Levi!

Shout it from the Rooftops!!

As I mentioned, Levi did roll to his tummy the other day, but it was definitely a struggle for him.  It probably took him an hour to figure out how to get his arm out from under him.  This morning I laid him in his bed on his side, and when I went in to check on him about 10 minutes later, he was completely on his tummy, arms at his sides, almost asleep!  I just want to shout it from the rooftops!  This baby is LEARNING!! He figured it out and now he knows!  I could not be more excited right now!  Thank GOD for these blessings!  

Friday, December 30, 2011

A Little Bad, A Lot of Good!

Levi's been doing so well lately!  We have come all the way down from 6 pills of Topamax twice a day to 3 in the morning and 4 at night.  Unfortunately, the last few days his seizures have doubled, so this morning I increased back to 4 pills.  I will talk to his neurologist in a couple days to see what she thinks, but I just couldn't watch him having seizure after seizure like that again.  And to think he used to have many, many more than that every day!

We took the week off therapy appointments, but Levi and I have been working together and he's doing great!  I laid him on the floor on his side with some toys and, as usual, he was able to roll almost to his tummy, but he's never been able to get his arm out from under him.  It makes him mad and he fusses, so I tend to help him out.  Well, I realized this is not really helping him, so I let him figure it out on his own.  He fussed lightly, but after a while he did get him arm out!  I was amazed and thrilled to see that!  I've also realized that I hold him like a newborn way too much, so I've been sitting him on my lap and putting him in positions to encourage him to hold his own head, and he has definitely risen to the challenge! When I carry him up on my shoulder now he holds his head up and looks around.  It's too cute.  While I walk his little head bobs a bit, but he can keep it up when he wants to.  I'm seeing so many differences in him now, it's so exciting!  I think we're finally to the point where he is learning and becoming interested in what's going on around him.  He's been putting his hand in his mouth!  I can't wait until he starts reaching for things!  What a blessing this little guy is for us!

Prayers for Baby Caitlyn

I'm sure many of you remember the sweet little miracle baby, Caitlyn, who surprised everyone with her recovery, against all odds.  She has been home for quite a while now, but is heading in for surgery today.  Please keep Caitlyn and her family in your prayers.

Father God, please hold Caitlyn and her family in your arms today as they go through this scary experience.  Guide the hands and minds of all the medical staff who work on Caitlyn. Show them the true problem and how to fix it.  Give Caitlyn strength and bring her through the procedure in good health.  Give her family your peace, that surpasses all understanding.  All this we ask in Jesus' precious name.  Amen!

Tuesday, December 27, 2011

December 27, 2010

December 27, 2010.  This day will forever be etched in my memory.  This is the day our whole world changed.  As we mark the one year point since Levi was rushed to Cardinal Glennon for the first time, I find myself reflecting on everything that's happened since then.  I expected to feel sadness today, to relive that day, and all the pain and sorrow it brought.  I had planned an eloquent retelling of events.  But instead, all I feel is joy.  We came very close to losing our precious little boy, but by the grace of God, we did not.  Levi is here with us!  All things considered, he is healthy, happy, and full of potential.  He has come so very far since this time last year!  He is our joy, our precious gift from God, and we are so thankful to have him in our lives!

Friday, December 23, 2011

Pictures with Santa!

Levi had a much better day today. He ate and drank well, and didn't gag on his bottle this evening.  Praise God! His normal congestion is enough to deal with, we don't need all this extra phlegm!  He had both physical and developmental therapies today, and did very well for both.  He held his head better, tolerated weight bearing on his arms, and sat up.  He used the light box for the very first time with Mary, and he loved it!  He was immediately looking at the dots on the screen.  It's a really neat thing, I'm excited to try it out and watch his reactions.

We received our pics with Santa from the Delta Gamma Center for Children with Visual Impairments today.  Our little Levi is so cute :)  Merry Christmas!

EEG Update

It looks like he's having the same type of seizures as before. The pattern did show infantile spasms.  We were hoping it might have changed to something else.  It's good to know exactly what's going on, though. We will begin the new med, Clobezam, the first week in January.  That will replace the Clonazepam that he takes now. He responds well to Clonazepam, but we can't increase because he becomes lethargic. The new med does not have the side effect of extreme sleepiness.  Please pray and believe with us that this will be the med to CONTROL his seizures, and he'll be able to wean off all but Clobezam.  Thank you for remembering Levi in your prayers!  Merry Christmas!

Thursday, December 22, 2011

Feeling Worse...

The day was a good one for Levi, but when I tried to feed him supper he was choking on phlegm again.  It took him 2 hours to drink a 1 1/2 ounce bottle of formula with meds.  He keeps trying to cough it up but can't.  I spoke with the GI doctor and he's going to schedule a procedure where they insert a camera down his esophagus and look at the lining as well as the stomach and intestines.  I'm praying all this extra phlegm is due to a virus, and will not become the norm.  Please keep him in your prayers!

Feeling Better!

Thank you so much for the prayers!  We are really feeling them this morning!  Levi woke up with smiles and ate a good breakfast.  He had OT today, which I considered canceling, but am glad I didn't because he was alert and happy, and did very well.  He's already had a little more applesauce and pedialyte, so today is much better than the last few.  I will keep you all updated on his progress.  Thanks again for your prayer!!

Levi Needs Prayer!

Since around May Levi has had this constant nasal congestion. I've been making the rounds through the doctors trying to figure out the cause, to no avail.  We saw an ENT doctor yesterday.  He put a tiny camera down his nose and looked at his throat, which showed that Levi's vocal chords are swollen, due to acid reflux.  So I guess it's not under control like we thought, even though he is on a pretty high dose of Nexium.  The GI doctor is supposed to call tomorrow.

All along this congestion has affected his eating. He has a hard time breathing while drinking a bottle, and sometimes will gag or choke.  It's been getting worse, the last few days have been horrible.  It's all I can do to get him to drink enough formula to wash down all the meds he has to take. He threw up a bunch of phlegm at dinner tonight, which was alarming, to say the least. I've been pushing pedialyte, which he likes, but he doesn't even want that now, so we've been dripping it a little at a time into his mouth with a straw.  If this continues we won't have any choice but to take him to the ER at Cardinal Glennon tomorrow.  We would really appreciate it if you would send up some prayers for him: that he feels better, the phlegm lessens so he can eat better, that the true cause will be brought to light so it can be fixed, and that the doctor takes us seriously and acts quickly.  Thanks so much!!

Saturday, December 17, 2011

One Year Ago Today....

Exactly one year ago today Levi became our son.  The evening before we had received a call from our daughter asking us to come to Angel's Cove, where she was living, and discuss adopting Levi.  So on December 17th we set out bright and early to make the trip up there, and came home that day with our darling little Levi.  He was just two weeks old.  We couldn't have received a more precious gift!  This will forever be a day of thankfulness and celebration for us.  Below are a few pictures of that day, and one of today, where Levi fell asleep in his activity gym.  Boy, how he's grown!  He started out at 5 lbs 11 oz and now has reached 16 1/2 lbs.  The year has certainly been a roller coaster, and so filled with blessings!  We thank God for every one of them!

Thursday, December 15, 2011

Pics of Precious Little Levi :)

Daddy and Levi cuddling during his EEG.

Levi snoozing in comfy Spiderman jammies during EEG.

Levi's mittens keeping him warm at Bowl Haven while we bowl.

Levi being a good boy and snoozing in the shopping cart at St. Louis Mills while I shopped with Aunt Mishy.

Tuesday, December 13, 2011

Chance Meeting at Walgreens

On our way  home from the hospital today we stopped at Walgreens to pick up one of Levi's prescriptions. While we were waiting, we began talking to a few people in the waiting area about Levi's history.  So before we left I told them about this website. One of the ladies I was speaking to has been here and read about him already!  We don't know each other, but somehow through our network of friends on facebook, she has heard his story.  You know, it's funny, because I wasn't even going to go into Walgreens, but we've been having issues with them, and I needed to help Patrick iron out a problem.  If not for that, I never would have met her.  God does work in mysterious ways.  I didn't get her name, but I was blessed to meet her and her daughter, and the other lady we were speaking with.  So if you visit here again, please leave me a comment.  It was great talking with you!

EEG, New Medication Clobezam

The EEG went very well. Our favorite tech Roz took very good care of us.  It was great to see her again, and she was surprised by how big Levi has grown!  We caught a lot of seizure activity, so I feel confident we will have a clear picture of exactly what's going on with him. It will take about a week to get the results.  Levi had a lot of difficulty sleeping again last night.  I was so tired I just let him fuss a little bit.  He had a LOT of seizures overnight, which is not usual, but if it had to happen it might as well be while he's hooked up to an EEG.  Finally he allowed me to put him on his side, and he curled up and fell asleep.  He's still sleeping now, looking like a sweet little cuddle bug.  I'll post pics later.

Our neurologist came by to see us last night, and I'm excited about the path they want to take with meds!  We will be starting a new medication that has just been approved in the US a month ago, but has been widely used in other countries like Canada, Australia, and in Europe for years. It's called Clobezam, and the reason I'm so excited is that it's in the same family as Clonazepam, which Levi has taken for months now, with very good results, except that it causes extreme sleepiness, and when we try to increase, he's even been lethargic at times.  Although the new med can cause sleepiness, it is not so extreme. So we are praying that we will see all the positive effects without the negative side effects.  We will begin that in a week or so.

Please keep this in your prayers. It would be so wonderful if we could wean Levi down off his other meds and only be on Clobezam to control the seizures!  We want to see our little guy wake up and start having fun and learning!  I will post pics later.

Monday, December 12, 2011

First Tooth!

After months of swollen gums, drooling, crying, and countless applications of Orajel, Levi has finally cut his first tooth! We noticed last night when we were at the bowling alley.  He's had swollen gums for so long that we've gotten used to it.  It was a shock to feel the sharp ridge of an actual tooth!  To me, that's just one more sign that he is growing, progressing, and doing very well!  I imagine the other teeth will be popping in pretty quickly now and he'll have a mouthful before long.  There's nothing sweeter than a toothy toddler grin :)

Sunday, December 11, 2011

Doing Much Better!

Levi is feeling much better!  Not only is he over that nasty cold he had, but we have weaned Topamax down from 6 pills twice a day to 4.  He's much more alert, doesn't sleep as much during the day, and is moving more and holding his head better!  We had him on a double dose of clonazepam at night for about a week and a half, but he was very tired and at times lethargic, so we put him back on the original dose, and I'm happy to report that weaning the Topamax has not increased his seizures!

We are going to Cardinal Glennon tomorrow for a 1 day EEG to determine if the seizures have changed.  We are hoping for very good news!

Levi's very first birthday was on December 3, and we had a nice party for him.  Today we attended the Christmas party at Delta Gamma Center for Children with Visual Impairments, and Mr. Levi had his picture taken with Santa.  I will post pics later.  That's all the news I have for now.  Things are going very well and we are looking forward to weaning more medication and seeing our little guy wake up even more!  Thank you for keeping Levi in your prayers!  Hope you are enjoying this wonderful Christmas season!

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!!!