"Having another child was not in my plans but like I have always been told everything happens for a reason..."

It was a very long and stressful pregnancy. Our baby boy was not growing or moving as much as he should be so my doctor decided it was time to find out why. After an Amniocentesis ruling out any defects we went on with the regular visits but also getting to do an ultrasound every time. It was wonderful getting to watch him develop.

Towards the end things began to get worse and that is when they decided that Trenton would have a better chance surviving outside the womb. On July 26, 2006, almost 3 weeks early, Trenton Alexander was born via C-section weighing only 4 pounds 14 ounces. He was immediately rushed to the NICU. I was just getting to my room and the doctors were coming in and asking me to give permission to start platelet transfusions. He was on oxygen and under a warmer.

The first time I saw him all I can remember is seeing all the tubes coming out of his poor little body. We still had no answer to what was wrong. His spleen was enlarged, small head and he had spots all over his body from the platelet count being low. A few days went by and he finally began to eat about 10 mls at a time. Trenton spent 9 days in the NICU. The day before we got to bring him home they got the results back from all the tests and that is when cCMV came into our lives. It was so heart breaking as they sat in this little room explaining to us what exactly cCMV was and all the defects that Trenton could be facing in the years to come. I, myself having already lost one child at a day old was petrified at the thought of maybe losing another.

Over the next few weeks Trenton had his platelets tested once a week usually on Wednesdays. It seemed that they were staying around 20,000 to 30,000 and should have been around 150,000 but the doctors said it was normal for a child with cCMV. Trenton began not feeling good on a Monday evening and continued into Tuesday night so knowing that he had a doctor appointment the next day to do a checkup and platelet count I waited it out. We didn't make it passed the checkup before he was sent to the hospital with his pediatrician right behind us and being admitted immediately.

First thing blood was drawn to check platelets. They were around 2,000. His eyes were glossy and he was just not himself. The pediatrician decided to call a specialist at Children's Mercy in Kansas City which is about 2 hours from where we live. The specialist decided he wanted Trenton in his care. The med flight helicopter was being used so they Children's Mercy sent a small plane for him. Eric (Trenton's father) flew with him to KC which meant I had to say goodbye to my baby not knowing what was going to happen to him but I had a 2 year old at home that I had to pack and find a place for her to stay.

The 2 hour drive there seemed like it took 8. Once we were there and he was settled into his room they ran another blood test and his platelets dropped to a severe low of 200. After almost 2 days of tests and transfusions they started coming up slowing. At this point is when they decided to start Trenton on Gancyclovir to help get the cCMV under control. Trenton received a hearing and vision test while he was there and both came back with no defects. After being in Kansas City for 8 days Trenton was getting to go home with a pic line so we could continue the Gancyclovir from the comforts of our home. In the next few months we made several trips to KC. Trenton was finally gaining strength but not weight.

Over the next year Trenton had began physical and developmental therapy in our home. He was in need of speech and occupational therapies so we were referred to the Cerebral Palsy Center in a nearby town. He started attending there 3 days a week in which he could receive all his therapies there. Trenton began wearing AFO's, using a stander, and slowly using a reverse walker. Trenton was diagnosed with Spastic CP in the lower limbs which were one of the effects of the cCMV so he had to work extremely hard with the reverse walker. His legs would begin to tremble after about 15 minutes of using it. He struggled with feeding issues and even though he has a full mouth of those pearly whites he was unable to chew and swallow as we do. Trenton eats purified/baby foods, PediaSure, and Carnation Instant Breakfast.

The later part of last year 2009 Trenton began seeing an Orthopedic Surgeon and a Specialist at Children's Mercy in The Spasticity Clinic and is now on Baclofen (muscle relaxer) and we have seen some major improvements. He is able to go farther and farther in his reverse walker every day and is using a stander for about 1 hour at a time now. I know it doesn't seem like much but for him it is wonderful. We are hoping that in about 1 ½ to 2 years Trenton will be able to have the surgeries he needs done on his legs.

This year 2010 he began seeing a nutritionist and a Feeding OT in Kansas City and they are not sure as to why he is having difficulty eating. On Trenton's 4th birthday July 26th he will be having a swallow study done. Hopefully that will bring us some answers to what we need to be doing to keep him from having a feeding tube. That has always been a possibility but we are fighting hard to keep that from happening.

In August of this year 2010 Trenton will graduate from the CP Center and will start a new beginning in his life and will start attending Special Education Preschool. Since Trenton doesn't have much speech and it is extremely difficult to communicate with him sometimes the teacher there has decided that Trenton would benefit from using a program called Pecs. It is photography communication. This could mean that in the future we might actually be able to carry on a conversation with our child instead of the usual yes and no questions that we use to communicate with him.

Trenton is an amazing little boy and I have never met a child who is so full of life like he is. He has many struggles everyday but he almost always has a beautiful smile on his face. We have been blessed to have Trenton be a part of our lives. He has taught us so many things in the last almost 4 years.

- Submitted by his mother, Crystal