(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
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 Trevors 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
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 Childrens 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 Trevors 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 Trevors 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 24th, 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 31st, we got the final word back from Dr. Wegners 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 Hunters 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.
Trevor is on a feeding machine for 6 hours during the day and all night long since he can not suck on a bottle anymore. We have him on Neurontin and Clonazepam for seizures and pain, but we have not really seen any seizure activity besides some shaking hands. We have purchased or received a bean bag, positioning chair, stander and Kid Kart for him to have a variety of positions and to help transport him places since he is gaining weight again! Trevor also receives physical therapy twice a week and occupational therapy and speech once a week, as well as us working with him twice a day in the hot tub. We have also had a great support system from the Sears family (email@example.com) and found that it has helped a lot!
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!!!!!!!
Trevor celebrated his 1st birthday on Mother's Day (what a Mother's Day present)! We had a hot tub donated for his birthday by the Love Fund in Kansas City and it is amazing the difference in his stiffness and how he sleeps (which is not the whole night). Trevor may not act like a child his age with all the crying and not being able to do anything on his own, but he is such a special gift from God!
Update Sept. 4, 2000
Trevor is now 15 months old and seems more content than he has for a long time. He is sleeping a lot more and seems to enjoy his time when he is awake. We feel that he has a way to communicate with us, but only the people that are around him everyday can understand what he is wanting. A cry usually means to change positions or I am tired! A grunt usually means he is happy and wants to laugh but can't! A hand that just happens to reach up to touch something means we wants something closer to him (a toy, his brother, etc). This is probably a lot of our imagination, but we feel that it is his way of communicating.
We have worked with all of our therapist to work out a schedule that seems to help Trevor the most! We work with Trevor every morning and night in the hot tub ourselves. Once a week he gets physical therapy, occupational therapy, speech and hippotherapy (therapy on horseback). We are never set on one way of scheduling because Trevor's needs change and we just change with him. We do notice that he seems lonely when his brother goes to school all day, but really lights up when he comes home at 3:30!
We have found that we have to go on with life like everything is normal, so that people will treat us normal and not feel sorry for us. We have done newspaper articles and spoke to a group of attending doctors a KU Med. Center, because we want people to be aware of the disease and ways to try to recognize it if they would ever see it again, but don't feel sorry for us, WE HAVE TWO WONDERFUL SONS!!!!!!!
Update January 1, 2001
We have been blessed to be able to spend some holidays as a family again this year and have never realized the true meaning of family until now! On Halloween, Trevor was too sick to get to trick-or-treat, so we went to his grandparents and great-grandparents homes. We truly enjoyed him looking like a little stinker in his skunk costume. I think he enjoyed looking at his brothers costume more though!
As Christmas approached, we were really stressed with the holiday buzz and the idea of losing Trevor, but once again he amazed us! We were enjoying the presents from Santa Christmas morning when Zac (our 6 year old) wanted to know if Trevor got a note from Santa. We didnt find a note, so we asked Zac what it said. He told us that he only asked Santa for one thing this year and it was to have Trevor for Christmas and to give him a note that said he did not have this disease anymore. As Bill and I were picking our chins up off the floor, we realized that none of us needed any of the gifts because we were a family getting to spend a special day together! Isnt it amazing what children can teach us if we listen close enough to them!
Trevor is still holding his own and seems to really enjoy all the family and extra attention he has gotten during the holidays. We truly believe that this is our Christmas miracle and thank God everyday for sharing Trevor with us. We never know when Trevor will have a rough day, week or month, but today we just love him as much as we possibly can and spoil the heck out of both our boys!
Update March 1, 2001
Trevors story has been fun to write and update, but this is one of the hardest updates that I have had to do. We lost our son of February 17, 2001 at 11:35 pm at the sweet age of 21 months. We knew that it was coming because we believe that he caught the flu that was going around with the real high fever. Trevor was running a fever between 102 and 105 most of two days and was having trouble keeping his formula down. We decided to do clear liquids to help his body stay hydrated, but it was just making him swell up because he was not going to the bathroom. We decided to call all our family and to keep our oldest son at home with us on Valentines Day, so we could all enjoy it together. We finally decided to take him off all liquids since he could not get rid of any and just make him as comfortable as possible. Our doctor helped as much as she could to keep us at home and comfortable, so my son was in my arms lying on the bed listening to his dad and I talk when he took one last breath and made a sad face and then peacefully went with the other angels.
We knew that one day this would happen, but you can never prepare yourself for this. I have so many mixed emotions about Trevor going to Heaven. I miss him so much that my heart aches, but I am happy that he is no longer in any pain. Hopefully, he is running and talking! We decided that if it did snow the day of his funeral that he was already in time-out. Guess what, after the funeral ended, the snow started coming down and we all just laughed!!!!!!!!!! His older brother Zac is such a good role model for Trevor to know what to do to get in trouble (they say it is all boy). It has snowed 2 days since the funeral also, so Trevor must be having the time of his life, we just wish we could watch!
The funeral was really hard and saying good-bye at the cemetery was even harder. We released balloons after the service and as I was watching Zacs balloon with a note for his baby brother float through the sky, I realized how free and happy it seemed and just pray to God everyday that Trevor is just like that balloon: Free and Happy!!!!!!!!!!!!!!!!
I cannot say that I would choose to go through this journey again, but I would not trade the time that we had with Trevor for anything! We know that our own guardian angel is watching over us and can see that our love continues even though I cannot hold him. We know that this is true because we had decided that we could not bear the idea of having anymore children and watch them go through this awful disease. BUT, one month after Trevor passed away, we found out that we were expecting our third child. With lots of worrying, all the test came back that we were going to have a healthy baby girl. Trevor now speaks to us through the eyes of his baby sister Hope. They look so much alike but we know that she could never replace our sweet angel Trevor. I think Trevor really had a hand in sending his baby sister to us, because she is definitely a gift from Heaven!
To pay back all of the help that we have received from special education teachers and the medical field, we have set up a scholarship in Trevor's name for anyone that has entered the field of special education or the medical field. We feel this will help other children in the future!
If anything in this story sounds familiar or you would just like to talk, feel free to email us at firstname.lastname@example.org.
God gave us an Angel
God gave us an angel,
when he handed us you.
you were taken so young,
our days were precious but few.
God has taken all the pain away,
and set our angel free.
crawl to Heavens playground,
for all eternity.
will go on,
God give us the strength,
take on tomorrow,
no matter the length.
taught the importance,
each and every day.
brought us love and joy,
your own special way.
remember our pain,
you feel it too,
on to our precious Trevor,
we used to do.
by your mom and a special friend!
He's My Son
By Mark Schultz
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can you hear me?
Can you see him?
Please don't leave him
He's my son
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