My Favorite Charities

My Favorite Charities

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The first charity I have gotten to know through my friend Julie.  The best way for me to share or explain this is by starting off with her story…

My name is Julie Cantu.  My son, Elijah, is 4 years old.  He was born with a virus called congenital CMV.  This is a very common virus that we pass around.  If you have never heard of CMV it is probably because it has little to no symptoms.  Most of the time you don’t even know you have it.  If a pregnant woman catches this virus for the very first time it can be devastating to her unborn baby.  This is what happened to my son, Elijah.

At my 20 week sonogram my Dr. told me I was having a boy.  He also told me he could see a mass in his abdomen, or a shiny spot. I was referred to a sonogram specialist. I was given a sonogram every month. After the first visit it disappeared. They told me he had probably swallowed blood because I had bleeding at the beginning of my pregnancy. They didn’t feel like anything was wrong at that point. Two days before I was scheduled to be induced the Dr. scraped my membrane to try to get the labor started. That night I started having contractions.

The next morning I was off to the hospital. They started to monitor my contractions and the baby. They told me I was not going into labor but they were going to induce me because Elijah’s heart rate kept dropping. By 7:00 p.m. it was time to push. They already had NICU nurses in my room because they thought the cord was wrapped around his neck. He was born 5lbs 1 ounce. He was so skinny and dry. They cleaned him off let us hold him. He was so beautiful. They took him for his first bath and for routine checkup and never brought him back.

I had fallen asleep. I received a call from the NICU around 1:00 in the morning. It woke me up. It felt like a nightmare. They told me they were admitting him into the NICU. His blood sugar was low and he was extremely jaundiced. Not the normal jaundice. He was actually green. He had to be under the light. They told us to rest. We would visit in the morning. At first we could barely hold him. Only to breast feed and then back under the light. At that point they did not know what was wrong. They would run more tests. They suspected CMV. All of the symptoms matched. They drew blood every other day because they were afraid he would need a transfusion. Next he had his newborn hearing test, he failed. We met with the Dr. He told us there was no response. I remember crying and wanting to stay.

We were discharged and Elijah had to stay in the NICU. That was the hardest thing I have ever had to do. Leaving the hospital with no baby, I would go home and pump milk and run back to the hospital every 3 hours to feed him. They took him out from under the light but separated him from the other babies because he may have CMV. He wasn’t doing well with the breast milk. Luckily he was a very good eater but they told me the breast milk was not digesting well. They switched to formula and switched again. It was the mildest formula.

We saw the Dr. about every other day. I dreaded those days it was always bad news. I asked the doctor if he was going to be okay. He told he couldn’t say that at this point. The next big test was the vision. I was so scared. I prayed and prayed, let him have his vision. That was the first good news, the best feeling! He stayed in the NICU for a week and a half. We just had to wait for his body temp to go up. They told us we could either take him home or send him to a children’s hospital to stay for a month and hook him up to antibiotics. But the antibiotics would mess up his white blood cells.

I had a very hard decision. I had the doctors telling me different things. I was so confused. I chose to take Elijah home and let him fight off the virus. I am so happy with my decision. So I left the hospital with my baby and a stack of papers stating he had CMV. I held him for a day straight without putting him down. I was so happy. For the next few months I had to keep Elijah at home. Limited visitors. Only visits to the Dr. The CMV affected his liver and enlarged his spleen. Luckily those problems were temporary.

He did follow up with an audiologist. We had two hearing tests. He failed both. He was completely deaf in the left ear and was almost completely deaf in the right. They gave him hearing aids knowing it probably wouldn’t help but it was part of the process. They sent him to an neurologist to get an MRI to see if he was a candidate for the cochlear implant. They did the MRI, his ears looked good but they found problems in the brain. He had fluid around the brain, but they said it would be okay. They told me he had holes in the brain. The left side was smaller than the right. He also had microcephaly, small head. This was so scary.

We soon found out he had cerebral palsy. His right side of his body was tighter then the left, particularly the arm and hand. They told me it could get worse. We immediately started OT, and PT. The PT noticed a tilting of Elijah’s head. She told me he had torticollis. It was so bad that it was making his head flat on one side. He was soon fitted for a helmet that corrected his head shape. He wore it for several months. He was implanted with his first cochlear implant at 1 year old. When they turned it on it was the most amazing thing. He was laughing. He thought the sounds were so funny. At 2 he received his second implant. It made such a big difference. He was able to locate sounds much better. Elijah is severely developmentally delayed. He did not hold his head up until he turned 1. After that he made huge strides. Soon after, he was sitting and rolling. At 2 he was crawling.  At 3 he can walk across a room with one hand held on a good day. He started school at 3 and loves it.

Elijah is now 4 years old and is able to eat solid foods!  He is working on communicating with an augmentative communication device.  Right now it is more like a game to him but he is really starting to improve.  He wears a cast on his left arm every day for half of the day to encourage him to use his right arm and hand.  He started horse therapy and he has developed a special bond with his horse, Valentine.  It has really made his trunk strong and loosens his hips.  He is able to walk around in his kid walk if he is in the mood.  Recently we have started potty training and he is doing really well!

He is improving every day. He is the most motivated boy I have ever met. He sees something and will get it. He is very curious and explores everything. He is so happy. He smiles and laughs every day. He does not speak yet. He is learning to listen. But he makes a lot of sounds.  He is the light of my life and I wouldn’t change him for the world. He has made me a better and stronger person. Even though it was a rough start Elijah does so much more than the doctors even though he would. He is amazing. I know he will continue to grow and improve even more. I am just so thankful to have him. Every day is a blessing.

This is preventable.  If you are pregnant or planning to become pregnant ask your Dr. to check your CMV status.  It is a simple blood test.  If you have never had CMV you need to be more careful.  You need to wash your hands, do not share drinks, avoid kissing children on the face, and wear gloves when changing diapers.  Toddlers are the biggest carriers of this virus.