Category Archives: Family Life

                It has been a long month filled with trips to Akron.  Each trip has narrowed down the diagnosis and we finally have something certain.  Because Levi’s heart checked out Ok, the doctors believe this is an isolated case of agenesis of the corpus callosum.  The corpus callosum is the main connection between the two hemispheres of the brain.  This is also related to the enlarged ventricles in the brain.  It sounds scary at first, but they have said that many times other smaller connections of the brain make up for this.  A week ago they told us they would be meeting to discuss this case and so we waited to hear from them.  We returned to Akron yesterday for another ultrasound and the ventricles had only slightly enlarged.  Last time they checked the ventricles measured 16-17 mm and yesterday they were a solid 17.  This is great compared to the growth that has been happening.  The doctor we met with was great.  He actually set up the first ultrasound in the state of Ohio. 

                He told us that he recommended delivery in Akron.  So now we have to make a choice as to which hospital Amy will deliver in, Suma or Akron City.  Both of these hospitals have level 2 nurseries run by Akron Children’s so they may not be any need to transfer Levi unless they find something wrong.  When he is born they will do an ultrasound of his head and probably another MRI to see if there are any other abnormalities with the brain.  All we can do is continue to pray while we wait.  As far as a long term prognosis, they are not sure.  We have been told to be cautiously optimistic.  If there are no other defects, Levi could live and learn like we would hope.   There are many people walking around today with agenesis of the corpus callosum and they have no idea, because the technology wasn’t there to diagnosis.  More good news is that we will not have to go back to Akron until the end of January.  During this visit they will officially transfer all care to Akron and we will begin only traveling there, instead of going to Mansfield also. 

                On the other end of the spectrum, we were less than a quarter mile from home when we hit black ice on the way to Akron.  We lost control and our rear end swung around and hit a car parked on the side of the road.  The gentleman was great and told us to go on to Akron and we could take care of things when we got back.  Everything seemed fine so we went on to Akron.  We got close when the tire that received the impact started to shake.  I pulled over to the side of the road and everything looked fine.  We continued to drive slowly and made it to our appointment on time.  I am thankful to my band directors that taught us early is on time and on time is late.  We made it fine.  The truck is was not able to make it back home.  We called the insurance and they towed the truck to a body shop and sent us a van from Enterprise.  We are waiting to hear what the damage is and how long it will take to fix it.   Until then I get to drive a new little minivan.  Hopefully, it won’t take long. 

                Thank you for all your prayers.  We will continue to keep you updated, but hopefully we will not have anything to report about Levi until our next visit to Akron.  I hope everyone has a wonderful New Year!

                We have just come back from a long day of travel.  Thank you for all your prayers as we have been going to doctors to see what is happening with Levi.  We went to Akron’s Children’s Hospital today for the first time.  We met with specialists and another consultant to let us know what was happening and what they are going to do from this point forward. 

                Originally the doctors were concerned about the left ventricle being slightly enlarged.  When we arrived in Akron today, they did another ultrasound to check and see if the left ventricle had dilated any more.  They found that the left ventricle had grown from 9mm to 14mm.  Also, they saw that two other ventricles were also dilated.  The right ventricle was at 12mm and the third ventricle was measurable, and they aren’t suppose to be able to see it.  The cerebellum is also enlarged and there is something else on the brain that is missing.  I am not sure what it was called; we heard a lot of large terms today.  They also discovered that the umbilical cord is not developed properly.  It is suppose to be made up of three vessels and there are only two.  They will continue to watch Levi’s growth because of this to make sure that he is getting all the nutrients he needs.  Right now his size and measurements are fine.  We did not receive the news we were hoping to get, but we are glad that they are beginning to see what is happening.

                This means several things for us.  We will be traveling back to Akron on Wednesday for a Fetal MRI.  This will give them a clearer, more detailed picture of Levi’s brain and let them know if there are any more abnormalities.  We will get the results of this test on the 15^th of December when we go again for another ultrasound.  During this visit we will meet with the doctor again, along with a neonatal-neurologist.  Then we will travel again on the 21^st for a test to check Levi’s heart.  December is going to be filled with visits to the doctor’s office.

                They are still not sure what is causing this to happen.  Around 35 weeks they are going to do an amniocentesis.  This is late enough in the pregnancy that if it does send Amy into labor, Levi will be safe.  By the 21^st we should have a better idea of what will happen after Levi is born.  The abnormalities are isolated and do not seem to be connected to anything else so, they are pretty sure this is a chromosomal or genetic problem.  Because of this, there is nothing we can do, but be prepared for whatever happens at birth.  They are trying to find out as much as they can so that Levi’s delivery will be safe.  We appreciate all the prayers and the cards.  We will keep you posted as we learn more.

  Today was Charlie’s first day to try and last in his Thomas the Train underwear.  It turns out that he does not realize they work a little different than diapers.   I came home today only to find out that he had gone through four pairs of pants and we were about to embark on another change. 
  Amy took him to the bathroom and started to put him on the toilet only to find out that he had given Thomas a little (OK, it was quite big) present.  Amy quickly asked him, “does it not bother you that you have poop in your pants.”  To which he quickly replied, “nope.”  The filth didn’t bother him at all, he just knew he was going to get to watch Thomas if he sat on the potty.
  It’s funny the things we will let sit in our lives.  They are the things we are not proud of, the things that haunt us, the things that we wouldn’t dare let those we respect know about.  It turns out that we all have things that we need to not be comfortable with.  We need to make sure we are not comfortable sitting in this filth.  We’ll see how long it takes Charlie to figure this potty thing out, but it seems like even as adults it is an object lesson we need to look back on every now and again.

Thank you all for your prayers as we have waited to hear about what was happening with Levi, our new baby boy.  We went to the doctor today and met with a specialist from Akron Children’s Hospital, Dr. Crane.  Dr. Crane was excellent and took a lot of time to explain to us what was going on.

The left ventricle of the brain is enlarged.  This is the area of the brain where the spinal fluid is produced and also coats the brain with the fluid as it develops.  A normal measurement ranges from 5 mm to 10 mm; right now Levi’s measures between 9mm and 11 mm.  This is normal, but it is at the highest end acceptable.  Everything else looks normal and healthy.  Another problem is that the part that produces the fluid is not in the proper place.  Normally it is located on the top and follows between the two hemispheres of the brain.  Levi’s is hanging off to the side; Dr. Crane used the term dangling.

They are not sure what caused either of these two things to happen, or if there is any damage to the rest of the brain.  We are waiting on a call from the doctor.  They are scheduling an appointment for us in two weeks at Akron Children’s Hospital.   There we will meet with a team of doctors that will look at what is happening and determine the next step.  They will do another ultrasound when we arrive and if the ventricle has not enlarged anymore, then this might just be a case of the normal, looking different.  They will also do an amniocentesis and a trisonomy 21 (sp?) to check for any chromosomal defects.  If the ventricle has enlarged further they will schedule an MRI to see in more detail what is happening.     They did some blood work today to see if any form of infection might have caused this to happen.  We will find out the results of this in Akron.

If they find an infection, they may be able to stop any further damage from happening using antibiotics and this is only if they catch the infection while it is active.  If it is something that has already happened there is nothing they can do.  In any of the other situations, we have to wait till birth to see what the full outcome is.  It may require delivery in Akron so that specialists are on hand in case Levi needs any immediate specialized care.   Right now they are in the process of ruling things out and trying to find out if this is having any other effects.  We will keep you updated and let you know as we learn more.  We ask for your prayers that the ventricle is not enlarged.  This seems like the next big issue.  It will determine many of the steps that follow.

It is easy to feel helpless at this point, but we also realize that we were never in control to begin with.  Psalm 121:2 reminds us that our help comes from the Lord who made heaven and earth, and Levi.  We appreciate your prayers and we will send you more information when we get back from Akron.