Nurse or No Nurse?

I have always had mixed feelings about having full time private duty nursing. When George was 5 months old we ended up in the hospital because his stridor had become worse due to really bad reflux. We ended up having to do a Nissen and all the nurses/doctors/hospital staff was shocked that I had no help at home. I kept repeating "well I don't work I'm a stay at home mom" to their horrified faces. Finally they got me to agree to have help since my insurance pays for unlimited amount of nursing. I was never fully excited about the idea. He was my son and here would be someone else telling me how to take care of him. Also our house is only 1200 square feet, and there would be someone there with me during the day. It just seemed strange.

I gave in because of all the times I had to take George to dr's appt's and the store and when I was stuck in the house. I knew I was starting to lose my mind with only a baby to talk to. I tried to get the nursing agency to send me just someone for a few hours a day but that wasn't a possibility. It was at least four 8 hour shifts or nothing. My first nurse was extremely unreliable, always late. She made me late for many of George's dr's appts. To the point where when we had a glitch in our approval and I couldn't have nursing for a few weeks, I told Jarrod I don't think I want her back. Our nursing agency sent someone else and she ended up being wonderful. George started doing much better in his therapies and I felt comfortable venturing out into the real world. I got used to the freedom.

Then the Thursday before last I got the call saying my nursing is being dropped because George is stable, I have a nurse until Monday and thats it. I felt like the rug had just been pulled out from under me. I was back in school studying web design in the middle of the semester, I had been volunteering regularly at the animal shelter, I had just started to have a part of my life that wasn't about being a special needs child's mother. The first few days I was devastated. I felt lost, I would have to drop my class and forget about doing next semester. But after a few days with George and a chance to deal with it, I was ready to do this. George and I had a system and I was in complete control of what happened in my home. I would just teach myself the web design stuff since I already was due to my unmotivated lazy teacher (thank you rural community college). I became so okay with the idea that on Friday when I received the call saying "you have nursing back!" I didn't leap for joy like I thought I would. Did I really want nursing back?

I think my biggest issue is with someone there to specifically care for my son I felt disconnected from the process. I wasn't always there to fix booboos and hold him when he was sleepy and delight in his accomplishments. Everything was filtered though my nurse. So I wasn't sure if I wanted her back. I ended up deciding to continue so I could finish my class and help at the shelter for just a little bit longer. I loved my week with George but how long until I start resenting my hubby for not helping more, and resent my child for not letting me have a life. I don't like feeling that way but those feelings always seem to find their way in. But next time approval comes up I will be prepared to lose my nursing again. It wont be the nightmare it seemed to be. I know that one day I wont be blessed with this free skilled care babysitting. I need to spend the next few months finding a way to keep my identity as something other than a mother intact for when that happens so that I can be the best mommy I can. A happy mommy is a good mommy.

George's head circumference

This week we met up with George's neurosurgeon and pediatrician. The news was the same, George's head is not growing as it should. Probably because due to George's spina bifida and chiari malformation at 15 months he is JUST starting to sit on his own and roll. He has not even come close to conquering either movement. The news was devastating to my husband and I. Could our son end up mentally disabled because he can't crawl around and chew on leaves that my dogs brought in on their feet. Surely we can change this.

I will be the first to admit that I had given in to the simplicity of television. George has to eat by feeding tube and therefore needed to sit still 6 hours a day. The easy answer: Television!! and boy did he watch and watch and watch. It started slow. I needed to work on something and realized that George liked SuperWhy (it was available on netflix). I remembered that in college I had somehow ended up on Nickelodeon one hung over morning and saw Backyardigans and loved it. So one day that was on Netflix and of course my brilliant music loving son was entralled! I let him watch one show a day, then 2. Then I was watching my shows and so on and so on until that TV was on all day long. And instead of playing with his toys George would sit there staring at the TV and I let it happen. My nurse would watch TV with him also because as soon as he learned to sign it, it was all he wanted. After finding out about his head, TV needed to stop being such a major part of our day.

How is George ever going to start feeling like he has to move if it is so easy to be entertained. So we are going to limit him to one show a day and I am limiting myself to 2. Already I wonder if I can do it. How am I ever going to keep up with Glee, the Office, 30 Rock, Modern Family, Parenthood etc etc etc. Especially when I have a baby who does not go to sleep until 11pm (that is a whole other issue I don't want to start on). I just need to remember those guilty feelings at those doctors office. YOU are preventing the growth of your child's BRAIN by plopping him infront of the TV to watch singing dancing animals. That should be my mantra. And don't get me wrong as far as children's shows go Backyardigans is the best, for a 3 year old, and once a day. Its extremely imaginative with colors and fun songs. But it shouldn't be all my 15 month old does all day. It should be saved for sick days and one 20 minute movie should be more then enough each regular day.

I can tell my son is already confused by the lack of his favorite show. I have replaced it with time in the pack and play surrounded by soft toys, Pandora radio in the background. And more PT with mommy. He needs more tummy time and sit down practice anyway. Looking back I had noticed his progress slowing down.

As for me I should be fine, life as a mom of a child with special needs is about compromise. Besides I have a house to clean and books to read and dinners to cook. Who has time for all those shows? (there is definitely a part of me having a tantrum right now). Its all about making that head grow!