Trevor’s Trouble

(A story of our baby boy that is the light of our lives)

           We were so excited to be adding to our small little family of my husband, my 4 year old and I.  I had a tough pregnancy with lots of all day long morning sickness, but it was going to be worth it because we had a healthy little boy on the way.  My four year old was so excited to be having a little brother that he could boss around and play with; he was going to be the perfect BIG brother!!!!!!!!!!!!!

We were amazed with his dark hair and the biggest blue eyes you have ever seen!  He started nursing right away and was wide-awake to see all of our family! Everyone said that we had a perfect healthy little boy that only eats a little bit every hour.  The nurses even commented on how strong his head was because he was trying to hold it up on his own.

            At two weeks, he rolled from his tummy to his back and was pulling his head up!  He was so strong!  A week later, he gave us his first precious smile and would turn towards us when we talked.  Even though we knew he could hear us, we had to have his hearing checked because his dad has hearing problems.  The tests took forever and told us exactly what we already knew, “he has no trouble hearing!”  They did tell us that it was taking a long time for his brain to react to the sound but that it was probably nothing.  If we wanted to do more test to come back.  I decided that I knew he could hear and there was no reason to do more testing (Mistake #1).

            At two months, Trevor was sleeping all through the night and gaining weight just fine.  He was hitting all his milestones on time or early.  He even was starting to roll from his back to his tummy and continued with strong head control.  We were constantly amazed at how strong he was and what he could do already!

In September, Trevor became the total attention of my 5-year old when he started laughing at things.  Zac could not get enough of his brothers new way of communicating to him.  We thought they were becoming the best of friends, what more could parents want?

            At Trevor’s six month check-up, I expressed my concern to my doctor that I felt that he did not have much head control any more and I was getting worried that something was wrong.  His response was “Oh Michelle, quit worrying so much he is just slowing down.  It is nothing to worry about!”  (Mistake #2)  

            My concern grew month after month until Trevor ended up with full-blown flu (influenza) in January.  He would not eat, so we forced liquids down him to keep him out of the hospital.  (Mistake #3)  When the doctor finally got him into his office, he was very concerned that Trevor was getting meningitis because he was holding his head back.  Again, we tried to explain that he has been doing this before he got sick and that we were told that nothing was wrong!  Thankfully, the flu ended and it took almost a month for Trevor to get his strength back.  I decided that I was not leaving his office until he gave me a referral to Children’s Mercy or KU Medical Center.  He was really against it until Trevor was nine months, but I told him that Trevor would be nine months by the time we actually would get into the hospital.  So, he finally gave in (Yeah)!

            Nine months came around; Trevor had lost almost 2 lbs.  He could not do much of the things that he should be able to do, but he was trying to sit up with support!  I told him that I thought my son had CP and wanted to get help as soon as I could!  All of a sudden my doctor finally became worried.  He called me at work on a Friday to tell me that my son was deteriorating quickly and I should call this neurologist today to get an appointment!  I did as I was told and cried for the rest of the weekend.  (Did I hear him say that my son was dying quickly?)  I felt that my doctor really let me down and I knew that I had to find a doctor that would listen to us!

The neurologist saw Trevor and talked to me for 1 hour before he ordered a CAT scan and agreed with me that he did see CP.  I also saw a speech therapist that worked with feeding problems so we could try to get him to eat again without forcing him.  That evening, the neurologist called to tell me that Trevor’s CAT scan showed some scaring that would be signs of a bad case of jaundice (which he never had).  He wanted to order a MRI, but would like to get Trevor’s eating under control first.

            Finally, the day came that we went to KU Medical Center for our check-up!  We talked to the doctor in the child development unit for an hour and she checked all kinds of movements on Trevor.  She said that she would be right back!  When she left, I told my husband that I had a feeling that we were not going to get to take Trevor home with us and that they probably think that I do not take care of my son since he is losing weight!  I was partly right, the doctor was admitting Trevor into the hospital to get all of the tests done and to finally find out what was wrong.  They also told me that I could stay by his side every moment because they could tell that Trevor and I had a very close bond that was important for both of us to keep!

            We were admitted into the hospital on March 21, 2000 and had EEG, MRI, eye exam, hearing exam, spinal tap and all kinds of blood drawn.  They called the Ronald McDonald House and got us a room for my husband or I to stay at.  We had no idea how long we would be in the hospital or what we would find out.  I told my husband that my heart was telling me that they were going to tell us that our child was dying. 

Three days later on March 24^th, a group of doctors (including my new doctor that actually listened to us) walked into the room with my husband, his mother, Trevor and I and closed the door.  They asked us to sit down and then started explaining everything they had found.  I was having trouble following all their terms, so I stopped them and said, “Are you telling me that my son is dying?”  Everyone went silent for a moment before the neurologist said that he was going to die.  My next question was “how long does he have?”  They told me it would be a year at the most.  My heart had been right and was trying to prepare us for what they were telling us.

The doctors would not give us a definite diagnosis until the blood work came back from Dr. Wegner in Philadelphia.  After a lot of discussion, we decided to put Trevor through surgery now for a g-tube because I did not want him to starve to death.

  I wanted to help make him as comfortable as possible.  On March 31^st, we got the final word back from Dr. Wegner’s office that it was indeed Krabbes Disease and that it would probably be more like two or three months instead of a year.  We decided that it was time to go home and enjoy the time we had left as a family.

When we arrived home, I got onto the internet and started researching everything I could get a hold of.  We found the Krabbes Website (www.krabbes.com) and Hunter’s Hope (www.huntershope.org) site.  I started reading other families stories to help me understand what we would be going through.  I found the Shell family site (TOMDIA22@aol.com) and decided to give them a call.  They talked about Anthony and Dalton and the transplants from Duke University.  They also told me how to get in touch with Dr. Kurtzberg (KURTZ001@MC.DUKE.EDU) at Duke.  We contacted her immediately!  She had us send his MRI and talked to our neurologist before she decided that Trevor had progressed too far to be a candidate for the transplant.  Both the Shell family and Dr. Kurtzberg were great help and very supportive!

Trevor at eleven months old had the ability of a newborn infant.  He may not be able to smile with his mouth but his big blue eyes shine when he wants to smile.  He may not be able to hug us, but if you put his mouth up to yours, he will open up and give you a great big wet one!  We are going through long nights and days of not sleeping much but I guess that is the way God wants us to spend all of our time together as a family.

We would not have been able to do all this without my school giving me paid leave for a year and all our family to help whenever we get overwhelmed.  Also, our whole town got together to do a fundraiser to help with bills since we are that middle class that does not qualify for any help!  Most of all, we have a wonderful doctor that listens to us and helps in any way needed!!!!!!!