On September 30th 2000 our first grandson was born  at 8:56 pm.  Weighing 7lbs 13 oz and 19 inches long, born to my daughter Keely and her husband Kris. How happy we all were as it had been a long nine months. You see this baby was so wanted and  loved before he was ever born and being young grandparents we were eager to be good at it.

My daughter  had a very normal and healthy pregnancy and delivery she experienced a normal drug free delivery.  Michael came home on th third day after birth and all seemed normal for a while.  Then he started to vomit a lot.  At his 2 week check my daughter told her doctor and he changed the formula and  home we came again only to experience the same thing, the next thing was changing it again to a rice based formula that did in fact help him keep it down, he did good on that for a long time.  He even gained weight. This child never slept through the night and when this was discussed with the doctor again we were told that it was normal and that at around 4 months he would out grow all this stuff.  In January we noticed that although Michael could smile alot he didn't coo and he was trying, he would try so hard and no sounds came out.  He wasn't rolling over or grasping his toys, he would try to get them but was unable and you could actually see him get irritated because he couldn't do it.  More and more we began to think something isn't right here, and then we would try to tell ourselves that maybe he was just a bit slower and others had said he would catch up, and the usual,  "well so and so's  baby doesn't do that yet either and he is older"?

In February we were noticing increased irritability and  increased tone. This little guy would cry endlessly and  there was little we could do, there was no putting him down and if he fell asleep it was short lived.  He would startle, stiffen and scream. OK, now this is not normal baby stuff.  His hands were in fists,  he was hardly ever in a good mood and as my husband stated at one point that something is wrong when it takes all four of us to take care of him.

One winter night after supper my daughter arrives baby in hand, "Mom please go tot the ER with me I need  answers and I am getting them tonight!".  We  know there is something wrong and Michael needs help, off we go and they called in a different pediatrician, as Michael had a family doctor and he was out of town.  This doctor knew right away something wasn't right.  He didn't have good tone and looked  tired and  withdrawn.  She observed him a long time and talked to us and  felt maybe that he may be having some type of seizure disorder. He couldn't be sure without tests so here starts the story.  He had an EEG and that came back normal and then he went to see a pediatric gastroenteroligist, he said it was all neurological.

We had an appointment set to see a neurologist over 200 miles from our home the following week and we were now feeling like this was to long to wait and  we could see this guy going down hill. Michael  couldn't even smile any more at this point.   April 10 2001... would deeply change our lives. As we arrived at the doctor's office they took him to do another EEG  before seeing the doctor and he screamed all the way through it.  Finally we go in the doctor's office, he asks some questions and looks at Michael and  then he goes and gets a nerve conduction machine, at this point I am wondering what is going on as I knew what that was.  After that was done,  he states that he fears Michael has Leukodystrophy....

All three of us stood there and my son-in-law then asked what it was and what could be done and  very slowly the doctor looked down and said  there is nothing it is terminal......

My daughter left the room  very emotional as my son-in-law and I stood there trying not to fall all apart but doing just that.  The doctor was admitting him for further tests.  I made the call home to my husband to tell him he was needed down there and he would arrive that night.  We are a close family and  we were devastated all our hopes and dreams and our lives would never be the same, and we wanted to wake from this terrible reality.

Whenever we looked at that sweet handsome baby we would plead.. "Please God let them be wrong, let there be help". We have a very good Genetic doctor and her assistant whom are more than  willing to explain it all and they are always there thank goodness.  But still we keep asking  "Why? This baby is so loved and wanted and cared for he doesn't want for one thing and has a good  mommy and daddy", what did we do we asked  ourselves.?

Since that time my daughter and her husband  brought him home to love and as my daughter whom I am very proud of states "We are living and we are having fun.  I will not be miserable around him!" and so he gets the best care.  I gave up my position so that  I could help take care of him, at this time we do it all very proudly and try to make things happen for him.

We have a wonderful family of support and friends,  and lots of  peoples prayers.  He also has the best doctor's and therapist.  We love them all and Michael loves them all.

We will go through this journey with Krabbe's together. One day at a time.

 At this time Michael has a feeding tube that was placed on  May 24th and is doing very well with it, he takes valium for his  irritability, and stiffness. Zantac for his reflux.  He currently is unable to take much by mouth as he chokes so bad.

Michael is our special Boy and  his grandfather and I love him beyond any words. 

Also check out Michael's CaringBridge Site at:  

http://www.caringbridge.com/me/michaelspage/

And take a look at his little sisters site, Michaela at:

http://www.caringbridge.com/me/michaelaspage/

If you would like to contact Michael's Grandparents, you can e-mail them at Julie & Phil .

 

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