24 Hour EEG, Spica Cast Checkup

The last day has been exhausting!  Sitting in a tiny room staring at your child and recording every little seizure is definitely not on my top list of fun things to do, but it was necessary and I'm glad we did it!  The EEG tech, Roz, is just a kind, caring, and awesome lady, we are always happy to see her!  He is having quite a few more seizures than we thought, but of course when we are home we don't sit in front of him and stare at him all day. lol  They are using this as a baseline and we will find out the full results next week.  We are increasing his Topamax to 45 mg twice a day.  At first this made him really sleepy and he didn't want to eat very much, but I guess he's getting used to it because he's been more awake and alert during the day, but still sleeping through the night (thank God!).  After we got home this afternoon he took a lovely nap in his own bed and then ate an entire bottle with very little chin support!  The past week there have been times when I could only get an ounce down him at a time, so this is very good news!  Also, he seems to have better trunk control and he's been lifting his head and trunk up from a reclining position!  I just love, love, love to report on happy things like that!

We saw the ortho doctor about Levi's spica cast today as well.  He thinks the cast is fine.  He has grown quite a bit but he has plenty of room to grow still.  Well, he would know better than me. lol  I'm glad we saw him anyway, it sets my mind at ease that he isn't squished up in there.  They cut a small portion away from the toes because his little toe didn't have any more room, and that seems to work out great.  They took x-rays and said that the cast is doing it's job, so we are going back in two weeks to check again.  If they have to replace it at that point because it's too tight then they will also do the procedure where they insert the dye and x-ray his leg before they replace it.  I think if they have to do that they may go ahead and put on the cast that goes only to the knees on both legs, but that is my own theory.  I'm just assuming they wouldn't want to replace the cast then turn around and do it in 2 weeks at the planned 6 week replacement. 

Does that make sense?  I feel like I'm rambling. lol  The darn monitor leads kept coming off last night setting off the alarms and driving me crazy, and I'm pretty tired today, but I feel really great.  The fast is going really well!  I feel as if we've had great news and Levi has been doing more and feeling better since we began it just three days ago.  I know the Lord is faithful and whatever we have to walk through He is right there with us holding us up.  Thank you all for your continued prayers, and don't forget about our celebration party/meet and greet for Levi on June 18 at Provision Living Center in Godfrey, IL from 11-6.  Everyone is welcome!  We are looking forward to spending the day with our family and friends, and meeting those of you that we don't even know who have been so kind to pray for our little guy all this time!  We will serve light refreshments and you can feel free to stay the whole day or a small part of it.  Looking forward to it!

Fast for Levi

Patrick and I decided to fast and pray for Levi's healing during the month of June.  We are fasting animal protein (meat, eggs, cheese, ice cream, etc).  For those of you who know me, you know that ice cream is one of my most favorite things ever, and one bowl (or cone, or sundae, or blizzard...) can fix all the world's problems. lol  I'm really excited about this fast!  I want to grow closer to the Lord and catapult Levi into healing of these newest problems.  Today was the first day of our fast, and we've gotten some of the most wonderful news!  We finally visited the urologist for the fluid sack on Levi's scrotum.  It is nothing to worry about!  It is a simple hydrocele which is very small and should clear up on it's own within the next six months!  WOW! To visit a new doctor and come away with news like that is definitely an answered prayer!  Also, I've just felt so much more peaceful and relaxed today.  I've been feeling lately as if a dark cloud were hanging over our heads all the time, even on the good days, but today I felt a covering.  I know this is the peace that surpasses all understanding.  I'm so thankful for that!

Tomorrow we go in for a 24 hour video eeg to gain more understanding of these new seizures and to see if the Topamax has made an impact.  Friday we will see the ortho doctor because Levi is growing so much his cast is becoming tight.  Hopefully they can just modify it instead of replacing the whole cast!  Please pray with us that the Topamax is working well and his seizures will be gone and ultimately, that he is healed of epilepsy altogether! We ask this in Jesus' name!  Thanks for your prayers :)

Memorial Day Weekend

We had a wonderful weekend!  Saturday Aunt Misty sat with Levi so Patrick and I could have a nice day out.  Sunday we went to our family reunion (Henderson-Darr) and saw many people we haven't seen in a long time!  It was a great time!  The weather was gorgeous, and we spent the day sitting under a shade tree and catching up with family.  Levi did great!  Monday we walked up to the Memorial Day parade as we always do.  It was a bit warm, but again we saw friends and had a great time!  This week we have an appointment with the urologist, a 24 hour video eeg, and an appt with the ortho dr because Levi is growing so rapidly his cast is getting tight!  It hasn't even been 2 weeks since it was put on!  All things considered, the boy is healthy :)  Thanking God that we've had a very nice several days and Levi has been feeling better. 

Home Again :)

So Levi is having Infantile Spasm seizures, which can be very dangerous and can result in regression if they are not brought under control.  We began a new med, Topamax, and will increase the dosage over the next week.  It will take 2 to 3 weeks before we know how well it will control the seizures.  On the positive side, I have already noticed that the clusters of seizures are not so frequent or so many.  Also, this is a condition that lasts until he is 2 to 4 years old.  Thank God it's something that will go away!  We are believing that Topamax will work wonderfully for him and fully control the seizures!  While we were speaking with the neurologist Levi began one of his infamous screaming fits.  She asked if he always does this.  I said yes.  The first time he had screaming fits we found out he had acid reflux.  The second time we learned his muscles were spastic which led to a diagnosis of Cerebral Palsy (a mild form thank God!).  I said I don't know why he's screaming now, it may be related to the cast, although he seems to be getting used to it.  She took pity on us and decided to decrease the Keppra because irritability is a side effect of this med and we have increased it so much lately he is at the max dosage.  AND she prescribed another seizure med to be given at bedtime that will help him sleep!  This is an answered prayer for us!  Since we left the hospital he has been pretty good.  He didn't cry at all during the car ride home, which is rare, and even enjoyed a trip through Walmart!  Right now he is sleeping, giving me time to straighten the house and hop on here briefly.

I have been feeling very depressed and beaten down lately.  It just seems to be one thing after another with him and I wonder when it will stop.  I know God doesn't give us more than we can handle, but it seems like I've been past that for some time now.  I suppose He is showing me that I can handle much more than I realized.  I think it was Mother Teresa who said "I know God doesn't give us more than we can handle.  I just wish He didn't trust me so much!"  That's definitely how I'm feeling right now.  BUT Levi is such a blessing to us!  We wanted another baby for a very long time, and here he is!  I know that at some point things will settle down and we'll have a happy little guy.  And the thought of getting consistent sleep at night is enough to really brighten my world :)

Also, his rash was looked at by a dermatologist and he thinks it is either a contact rash or a type of heat rash, neither of which we should be concerned about.  It doesn't seem to bother him at all.  So we will be using gentler soaps for him to see if it goes away.  Apparently the ingredient in baby products that makes them "tearless" is also becoming an irritant to some babies with sensitive skin.  So it is a relief to know this doesn't point to yet another diagnosis!  Yay!  This is all I know for now.  Hope you all have a wonderful holiday weekend!  We are hoping to barbecue and relax with a happy baby!

New Type of Seizure

Well Levi is still having seizures so we came to the hospital for a video eeg which showed that he is having a new type of seizure.  He was having focal seizures, now he is having spasm seizures, which are more difficult to treat.  Phenobarbital is not an effective med for this type,  Keppra is but he has reached the max amount he can take.  So we are starting Topamax today and may need to begin a newer more aggressive med soon.

He also still has a rash over his whole body.  Not sure where this came from.  We did a strep test because the rash and seizures began at the same time that Tommy had Strep, but the initial test is negative.  Calling in infectious diseases doctor to look at rash.  That's all we know right now.

Spica Cast

On Thursday Levi had the hip surgery.  They injected a dye into his hip and took x-rays. Thankfully the bones and cartilage were intact!  He does have hip dysplasia, his left hip has a very shallow socket.  The doctor described it as being like a saucer when it should be deep like a bowl.  So he has been placed in a half body Spica cast.  His entire left leg is casted, the right leg to the knee, and then up to his chest.  This will last for 6 weeks, then he will have a different cast that will only go to the knee on both legs for 6 more weeks.  He's cranky and not loving it, but he's doing well all things considered.  He is still having seizures, and so we are going up on both meds today for a bit to get them under control.  The one med will likely make him sleep more, which is probably a good thing while he's getting used to this cast. 

On a side note, I'd like to say Congratulations to our neice LISA for graduating high school this week!  We love you, Lisa, and we're so proud of you!!

Breakthrough Seizures

Levi has been having small breakthrough seizures for about a week now.  The doctor increased one of his medications slightly, and although the seizures have decreased, they have not gone away, so his med has been increased slightly again, and we are taking him in to have his med levels checked.  I do thank God that his seizures are very small and do not involve his whole body.  He is sleeping a lot, though, so I'm sure that it just wears him out.  Otherwise he is doing pretty well.  We were actually able to attend Samantha's 16th birthday party (Happy Birthday Sam!) and remain for a lengthy period.  Levi did very well!  Of course, he had many people who were happy to entertain him!  It was so nice to relax, laugh, and enjoy ourselves!  Levi's surgery is still scheduled for Thursday, and I will be updating at that time.  Please pray that his hips are whole and healed!

Hip Surgery

Levi is having day surgery next week to find out exactly what is wrong with his hips.  His left hip is either fitting too loosely in the socket, in which case he will be in a cast for about three months; or his hip was septic when he was so sick with meningitis and all the cartilage is gone, and one leg will be shorter than the other.  If that is the case, they will wait until the future to do anything. I don't know if that would mean surgery, or special shoes, I'm just not sure.  We are praying and believing that his hip will be healed in the Name of Jesus!

We had a meeting with the physical therapist yesterday and he will be starting therapy very soon.  We have a follow up meeting with occupational and developmental therapists soon as well, and will probably be meeting with all three on a weekly basis.  I'm very excited about this because now we will be moving forward and helping Levi learn the skills that he should have at this age.  I think he's doing well, considering everything he's been through.  He does try to do some of the things he's supposed to (holding up his head, focusing and tracking items, etc). 

There is some concern that he does not see clearly, and we will be visiting an opthamologist next month.  My calendar is so full of appointments I have to check it before I shedule anything else LOL.  That's ok, one day all this will be behind us and we will have a happy, active little boy!

We will be having an open house for Levi on June 18 in Godfrey.  I will post details soon. We would love to see and/or meet all the fabulous people who have been praying for Levi all these months!  Please come join us!

Hip Dysplasia, etc

We have been in the hospital since Saturday morning. Levi's screaming bouts have gotten continuously worse and no one seems to know why.  Patrick and I think it is belly related, since he always screams after a feeding.  He will be going for an Upper GI in a bit and we are praying that this gives us the answers we need!

Levi's Not Feeling Well :(

Levi is having a lot of pain again, I believe it's all the gas in his belly.  He saw a GI specialist on Tuesday and she changed his acid reflux medicine and put him on rice cereal in every bottle.  It doesn't seem to be helping, and last night and this morning he has just been screaming in pain.  Thankfully a warm bath relaxed  him and he is sleeping.  His belly is very distended with gas and hard to the touch.  We are waiting for the doctor to call us back.  Please pray that they get to the bottom of this and figure out the solution to take his pain away quickly!  Last week he had such a nice week, but the last few days have been extremely hard for him, and for us!  Thanks for your prayers!