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!

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!!

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!

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.

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.

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 :)

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!