From the beginning my 34 week ultrasound
When we were planning to have our first child, you never think anything could possibly happen or go wrong. It's not the first thought that enters your mind. You think about the person they could be, the activites they will be able to do, what will their interest be, etc. My pregnancy was a textbook pregnancy until my whole world turned upside down at 34 weeks pregnant. I went in for a routine ultrasound to check on our healthy baby boy. The ultrasound tech started the appointment and something apparently caught her eye. She keep going back to his head and called for the doctor to come take a look. This never happens. You typically see the doctor after the appointment. The doctor came in and the look in her face scared me to my very core. The worst came to my mind. She pulls us into the office and explains that there seems to be some fluid on our baby's brain. She's not sure what is causing it or where it's coming from, but we are referring you to a specialist. I think I went into instant panic mode.
Referred to Faternal Fetal Medicine
We were referred to a specialist in New Orleans. They did another ultrasound to see what my doctor saw. They told us it could have been a few things and asked to run some test. All the test came back negative or normal. The fluid never moved increased or decreased the rest of my pregnancy. So we were monitored every 2 weeks until Greyson was born via c-section at 5:30 p.m. 6 lbs 12 oz & 19 3/4 inches long. We thought that he would have had to go to NICU, but he ended up not needing to go. He came out doing everything and looking just like a "normal" baby should be and look. He had an ultrasound of his head while in the hospital. They said that the fluid was still there. The doctors agreed that he would need an MRI done while outpaitent. We were discharged almost 3 days later.
THE MRI & The Results
At 2 weeks old Greyson underwent an MRI, which caused us having to stay the night at Children's to avoid having a apnia episode. Right before being discharged we finally got the results we have been waiting for. The doctor came in and I'll never forget that day. She told us that he appears to have suffered a stroke in utero with a brain hemmorage. The fluid is still there, but it appears that the brain hemmorage has healed. Where it happened it will affect his coordination. Even though we were trying to soak in what was told to us. We didn't really realize what was going to happen and truly be the affect of it. It took a long time to come to terms with it and to understand everything that came with it. The moment we came home from the hospital he was enrolled in Early Steps to start early intervention.
Greyson has come a very long way. He is delayed in a lot of his milestones. It took him 4 months before he was able to lift his head up on his own. He had to have 2 eye surgeries because he was cross eyed. After this vision was corrected he was able to improve on his coordination. He didn't crawl on his hands and knees until he was 2 years old. Sitting on his own took a long time to master and he is still a little wobbly on it, but sits up so much straighter. The stroke has affect his ability to balance and his coordination. He is almost 2 1/2 years old. He is not standing or walking independently without assistance. Greyson has to wear a pair of AFOS so help with his tight muscels and low muscel tone. He also walks with a posterior walker. He cruses in it now. He is still nonverbal, but he has a lot of coordination issues with it comes to his mouth. He goes through a lot of therapy weekly. He has PT once a week, speech 3 times a week, OT twice a month, and a special instructor with the school board works with him twice a month.
He is just happy
At his 2 year MRI we were told that the fluid was completely gone! Even though he has no idea that he is different or should be doing things a different way by now. It's the best thing for him. He is such a happy child. He always wants to make you laugh. He is fun loving and full of life. He is determinded and he doesn't let his disability stand in his way. He was officially diagnosed with Cerebral Palsy at the age of 2 years old. To him this is just a diagnosis. It doesn't define him. He was the Cerebral Palsy telethon poster child in our area. If he wants to do something bad enough, he sets his mind to it and gets it done. He's our biggest blessing and have changed our lives for the better. We didn't think our lives would end up like this. There is a reason it did. I honestly wouldn't change it for the world. I would change to world to make his life a little easier. This is why I try so hard to advocate for him. I run a blog and an instagram that tracks his journey. I will keep fighting and be his voice to get him what he needs.