Sunday, January 27, 2013


For the past couple of weeks Patrick, Mom and I have been fasting and praying for Levi.  For quite a while now I have been praying for breakthrough, and have received it.  The breakthrough I had in mind was for Levi, but God had a different idea.

Last week at church Pastor Mike was talking about what happens when we focus so much negative attention on a problem that we can't see around it.  The problem becomes our focal point, and we forget to look at the big picture and what God can do.  This really struck a chord with me.  For two years now I have been faced with problem after problem (Levi's various health issues) and at times the issue of the moment has become all-consuming.  I try so hard to figure out what's going on and how to fix it.  I'm not saying that I shouldn't do that, only that I should not allow it to take over my entire life and turn me into a stressed, joyless hag.  What was revealed to me during Pastor Mike's message (and various other venues through the week!) is that I am not in control.  I have absolutely no control over what ails Levi and the timing through which it will resolve.  I can focus every second and every fiber of my being on trying to figure it out by myself, but it will do me, or Levi, or anyone else around me, no good because I am not in control.  God is.  He always has been, and always will be.

I can't tell you how freeing this has been!  I've taken my life back.  I sing to Levi more, play with him more, spend more time counting my many blessings instead of being fearful of the present and the future.  I still work through problems as they arise, but they do not consume me.  I have accepted the developmental state that he's in and stop trying to rush him before he's ready.  All this will work out according to God's timing, not Lynn's.

So the breakthrough I prayed for has been delivered.  Not as I asked for, but as I so desperately needed.  For that I am grateful!

Tuesday, January 22, 2013

Going Strong!

Finally, at long last, Levi is feeling better and stronger every day.  His bowels are becoming more regular.  In fact, he last night he had such a huge diarrhea we decided to stop the Milk of Magnesia and see what happens.  The new carnitine supplement should be helping the bowels as well, and I'm think the combination of the two is too much.  Hopefully he will no longer need a laxative.

He is feeling so much better!  Right now he is standing in the gait trainer, watching the snow fall out the window.  He's working hard on head control, and the gait trainer is the best practice he gets.  He's been standing for 20 minutes and still going strong, enjoying himself.  I've added a video below.  Please continue to pray for Levi, he's come so very far! 

Saturday, January 19, 2013

More Poop!

I just have to say, God is good!  Today is day 6 of our fasting and prayer for Levi, and so many fantastic things have been happening.  Most importantly, Levi pooped again on his own yesterday!  It wasn't even time for an enema yet.  Our OT Corin picked him up from the swing and told me he needed changed.  I was surprised because I had just changed him.  It didn't occur to me that she meant he had a stinky diaper.  I was so excited I danced around the room! 

I feel like God revealed the cartnitine deficiency as well.  It's something that's not too common, but can cause so many issues, many of which Levi has had.  We start the supplement today.  I'm looking forward to a big change in his energy levels, even more normal pooping, no more tummy pain, and better appetite.  Who knows what other wonderful improvements he will make?!

This morning he is smiling and watching TV.  A huge thanks to everyone who follows his progress and prays for him!


Wednesday, January 16, 2013

Wonderful News!

I am so happy to report that Levi pooped today, all on his own!  No enema, no suppository!  He was due for an enema this evening, and I've been dreading it all day, but lo and behold he did it all himself!  Good boy!  I can't tell you how relieved I am!  He's pretty happy about it, too.  He's been grinning from ear to ear.

We found out yesterday that his carnitine levels are low.  He will be taking nearly 1000 miligrams of a carnitine supplement, which sounds substantial to me.  As I've researched I've found that carnitine deficiency can cause other issues that Levi has faced over the last several months (low intestinal motility, lack of appetite, complete loss of appetite, weak muscles) and I'm hoping that this will go a long way towards making him feel better.  We could surely use prayer in this area!

Tuesday, January 15, 2013

A Good Few Days

Since we have gotten home from the hospital Levi has been doing pretty well.  His tummy no longer gurgles and grumbles all day since we stopped Miralax.  That is a huge improvement in itself!  The Milk of Magnesia has not yet worked, but we gave him the Dulcolax suppository on Sunday and he was covered in poop up to his neck.  The best part about this is that it did not hurt him at all!  Lately the enemas make him scream, and even though we know it's best that he have them, it's hard to make him go through that.  Unfortunately we can't give the Dulcolax more than once a week because it's habit forming.  Hopefully it will help wake up the colon and it will start working on its own.

Levi has been sleeping all night again!  Hallelejuh!  I can't remember when I've gotten this much sleep, or felt this good.  He is still so tired, and I'm not sure if that's just due to the hospital stay, teething, or what's going on.  He also is still having episodes where he throws his arms out (like a newborn's fear of falling) and cries.  I'm not sure what's causing this, either.  BUT he's been full of smiles today and a little more active.  He sat in his highchair and we played with a light up musical toy.  He paid  a lot of attention. 

Patrick, Mom, and I have decided to fast and pray for him again.  We have gotten wonderful results in the past.  Our God is SO good!  We welcome anyone who wants to join us.

I scheduled his follow up swallow study for next month.  I'd like to ask for prayer for this as well.  The last swallow study showed that food and liquid pooled at the back of his throat, putting him at risk for aspiration.  That is the reason he has the G-tube.  We are hoping that the study will show that he can swallow successfully.  I'm excited to start giving him small snacks and teaching him that food is yummy!


Saturday, January 12, 2013

Home Now

Levi has been feeling much better since the enema.  He tolerated the feed very well, and we came home last night.  He actually slept all night!  I can't remember the last time he did that.  Today he's been happy and content. 

The new plan is Milk of Magnesia once a day.  If he doesn't have a bowel movement in 3 days we will try a Dulcolax suppository.  This is a stimulant laxative, and the hope is that it will wake up the colon and help it work on its own.  It's habit forming, though, so can only be given once a week.  If needed, we will use enemas in between Dulcolax.

The lab tests showed that Levi's magnesium level is a bit high, so we are giving MOM once a day instead of the original twice daily dose.  The dietitian ordered a lipid panel to check cholesterol, etc, that can be elevated due to the Ketogenic diet.  His ldl level was slightly high (113 and they like to see under 100), but Jamie said everything looks excellent for being this far into the diet.  They are also checking his carnitine levels.  It is common for kids on the diet to need a carnitine supplement. I was researching symptoms of carnitine deficiency and interestingly enough one of the symptoms is low motility of the colon, exactly what is going on with Levi.  If he does have a deficiency that might explain why it's taken so long for his bowels to rebound after the surgery.  We should have the results on Monday.    


Thursday, January 10, 2013

Successful Day

So the enema was a success, thank God!  It was painful for him, and we're not entirely sure why it bothers him so much now when he didn't mind at all before, but at least it worked.  Afterward he took a nice nap, and he's been comfortable for most of the evening.  He's in bed now, looking around, but his eyes are getting droopy.  It's so nice to see him feeling better!  We will start  his feeds sometime tomorrow, and as long as that goes well (and I have every reason to believe it will) then we can go home. 

Our son Tommy and his girlfriend Kori came to visit us.  We had a wonderful time chatting and catching up with them.  It was great just to be able to relax and enjoy their company for a while!

Tommy, Kori, and Levi in February 2011

Plan for the Day

We saw the attending GI physician this morning.  At first I was unhappy with what he had to say, but I've come to realize it's not so bad.  He believes that the blood Levi vomited was due to irritation at the G-button site.  That makes sense, and was actually what Patrick expected.  He went on to say that we will basically continue the plan that we have implemented at home with laxatives and enemas to help Levi empty his colon, with maybe some tweaks along the way.  He said that although they don't have any plan of action that will fix the problems right away, Levi is NOT in any danger.  I didn't realize how badly I needed to hear that!  I've reassured myself, but hearing it from the doctor took that thought out of the back of my mind. 

Levi just had a rectal exam in the hopes of stimulating him into going on his own.  If that fails, this afternoon they will give him an enema.  If that fails, they will use a rectal tube and saline flush to clean him out.  After that has been accomplished and he's tolerating feeds, we can go home.  Hopefully that will happen tomorrow.  He has had waves of pain and cramping today, but periods of smiling as well. 

I just have to remember that although this is something we have dealt with for a long time, and will deal with for a while longer, it is fixable. I need to be patient and rely on God.  After all, His timing is perfect!   

Wednesday, January 9, 2013

In the Hospital Again

So as you know Levi's tummy troubles have continued on, so far with no answers or solutions.  On Monday we had an appointment with Dr. Rosenblum, his GI doctor, and decided to discontinue Miralax and begin Milk of Magnesia, with an enema every 3 days if he hasn't had a bowel  movement.  Yesterday we gave him an enema that yielded no results.  The enema itself didn't even come back out, let alone any stool.  This morning he retched and vomited watery red blood.  Not blood tinged formula, just blood.  This frightened me enough to rush right over to Cardinal Glennon.  He is receiving IV fluids with no feeds today.  I was told the x-ray showed an impaction.  This is new.  Usually all the x-ray shows is a lot of fluid in the intestines.   We haven't seen the attending GI doctor, and don't expect to until the morning.  Levi was smiling and pretty happy considering everything he's going through, until it came time to start the IV.  It took four tries before they found a good vein.  He's such a trooper!  He smiled through the entire first stick, but when they scrubbed his other hand he knew what was coming and threw a fit!  Poor little guy!  He's been uncomfortable since then.  Right now he's resting in bed, drifting in and out of sleep. 

Please God, just show the doctors what the problem is and how to fix it!!!  Levi has been dealing with these issues for five months now.  Please pray for breakthrough, answers, and solutions!!


Tuesday, January 1, 2013

Tummy Troubles Continue

Levi has not had a bowel movement on his own (without an enema) since December 9.  I feel like we are back to square one.  I've tried administering Miralax in different ways, at different times of the day, in various amounts of water, but to no avail.  It doesn't seem to be working at all anymore.  In fact, it seems to only make his tummy grumble painfully and promote gas pains that make him scream until we vent his tube.  By this time he is so exhausted he takes a long nap. 

The new frightened/pained screaming that I mentioned in an earlier post has continued, sometimes very frequently.  I've been watching him closely and believe that it is in response to pain.  Most often just after he cries in that manner his tummy grumbles.  And I don't mean it grumbles like he's a little hungry.  It grumbles as if a storm is brewing inside his intestines.  You can hear it, see it, and feel it.  But it doesn't resolve with a bowel movement.

The poor little guy squirms around in some level of discomfort most of the day.  We are back to holding him most of the day because he doesn't feel well. 

I tried to call the GI doctor yesterday but unfortunately they were closed for the holiday.  I will call him first thing in the morning and let him know all this new information.  I'm hoping to throw away what we have been doing so far and begin a new plan.  I'd like to try a stimulant laxative.  We'll see what the doctor says.  In the meantime he can use all the prayer you can send his way.  Something has to be done, he's been going through this since August!!  Thanks in advance for praying for Levi!!