I decided to start writing my blog again! I must say it does feel nice to write again. We have been through so much since I have last blogged. To say it was a roller coaster ride is an understatement. We've definately had our ups and downs this year. I will give everyone a recap on Reilly's current medical conditions that we found out the past 7 months.
-Chromosome 2 and 6 slight deletions. (DNA). Chromosome 6 deletion causes low muscle tone, poor coordination, seizures and development delays. No effects for the Chromosome 2 deletion.
-Epilepsy
-3 Vitamin deficiencies (which are reasonable under control ) Vitamin D,B12, Iron
-Mild Lazy Eye
-ADHD
We fought so hard to get these answers. Constant visits to specialists and hospitals for testing. I was determined to not let a doctor tell one more time that "Sorry we know their is something wrong with your child, but we may never figure it out". That wasn't good enough for me. How do you tell that to a parent anyway? I knew in my heart their needed to be a reason. We knew it was going to be hard for Reilly, given the multiple testing but we wanted to do everything we could. I can still remember my heart sinking and fighting tears in my eyes when at one point we had to get some blood work done for Reilly, 7 viles. Yes seven. My son has sensory issues. He doesn't like people touching him that he doesn't approve. So I sat there with a brave face and held his legs between mine with all the force I could. He knew what was coming and started kicking and getting upset. I then proceeded to put my arms over his chest and arms. I came face to face with 3 nurses. He knew exactly what was happening and wanted no part of it. My son has had blood work done multiple times and knew he hated it. As soon as that needle hit his arm he cried harder than I could have ever imagined. He started crying hysterically. He cried and yelled for his Dad. Who mind you was in the car with my other son. All I could manage to tell him amongst my own guilt and sadness was "It's ok Reilly, Mommy's here", "Almost done Reilly, it's ok". All I knew is that it didn't feel ok. I hated it, every moment of it. But if I didn't do this for him and for us we wouldn't get the help we needed for him. It felt bittersweet. I hated causing my son pain. I wanted to wisk him away and tell him I was sorry.
We get moments like this often. And each time I put on a brave face and act like I can do it. Inside I want to scream. Not scream at the doctors and nurses. But God. Why does he decide to put my son through such hell. Such a precious, sweet little boy.
Today we had to take my son to the eye specialist. The doctor started talking to Reilly as if she thought he understood her language. She wanted to dilate his eyes so she said we had to put eye drops in his eyes. My husband and I know the drill. Restrain. It's an ugly word in our house. But a common one with Dr appts. So it took all my strength to hold his legs and arms again while my husband attempted to calm him down and hold his head still. Needless to say he freaked out and cried hard. I hate these moments. At this point I was exhausted from chasing him around in the waiting room with his younger, just as active brother ( 2 yrs old). I felt I had no strength in me to hold my child down for his safety. We have learned we must do everything as a team. We never ever go to any appt alone. It took a while to get a good system down but we did it. We both know what each of our roles are in dealing with him in public. It almost becomes a wierd normal state of mind.
No one tells you these things when your given a child like mine. Their is no book in this world that could ever explain how difficult it is or how absolutely rewarding it is at the same time. With this new blog I want to share more than I did before. I want to really share exact moments like I did above. Someone shared an amazing quote to me "If it's not alright,then it's not the end".
No comments:
Post a Comment