I feel like I haven't posted much lately and all of a sudden I am doing a new blog every day? Maybe it's just me being restless..
I have been on edge lately..I had to take my daughter to the hospital a few weeks ago to get a barium enema due to some tummy issues. That in itself was pretty awful, she woke up from the anesthetic completely crazy..I asked if she was in pain and they were like, "maybe..we can give her some tylenol and see if it helps" it helped and she calmed down after another 30 minutes. I hadn't seen her that upset since she was a baby in the NICU.
I finally got a call from her surgeon telling us that we need to see a GI and that her tummy issues are not due to her previous surgery. He did find something though..apparently her illiac bone is flattened. He asked if she has developmental delays and I said yes..she sees a physical and occupational therapist twice a week. He said that it isn't uncommon for kids with this type of findings combined with developmental delays to have chromosome abnormalities and that she should see a genetics counselor as soon as possible. I was stunned..everyone is constantly telling us how amazed they are by how smart Julianna is. Most of her delays are all physical and we were told they would keep getting better with therapy.
So, here I am now waiting until next week to get blood work back. It is the first step in a long process to find out if she does have chromosome abnormalities and what kind of treatment she may need. I am trying to stay busy and focus on other stuff, but I am always a little off. I just don't want her to have to go to more hospitals, have more tests..ect. She is already so terrified of doctors that she can't go to the veterinarian with us...if it looks medicinal than she wants no part of it.
When I am at therapy with Julianna we see all different kinds of disabilities and different levels of deformities. I pretty much feel like the biggest dick in the world for ever using the word retard as a joke. I hate that it took having a child born premature and seeing ill children in pain to make me realize that it is an intensely cruel thing to say. I get scared about Julianna being teased when she is older and I always say how mean kids can be..but, I forget how mean adults can be as well.
this is one of my favorites....
I have been on edge lately..I had to take my daughter to the hospital a few weeks ago to get a barium enema due to some tummy issues. That in itself was pretty awful, she woke up from the anesthetic completely crazy..I asked if she was in pain and they were like, "maybe..we can give her some tylenol and see if it helps" it helped and she calmed down after another 30 minutes. I hadn't seen her that upset since she was a baby in the NICU.
I finally got a call from her surgeon telling us that we need to see a GI and that her tummy issues are not due to her previous surgery. He did find something though..apparently her illiac bone is flattened. He asked if she has developmental delays and I said yes..she sees a physical and occupational therapist twice a week. He said that it isn't uncommon for kids with this type of findings combined with developmental delays to have chromosome abnormalities and that she should see a genetics counselor as soon as possible. I was stunned..everyone is constantly telling us how amazed they are by how smart Julianna is. Most of her delays are all physical and we were told they would keep getting better with therapy.
So, here I am now waiting until next week to get blood work back. It is the first step in a long process to find out if she does have chromosome abnormalities and what kind of treatment she may need. I am trying to stay busy and focus on other stuff, but I am always a little off. I just don't want her to have to go to more hospitals, have more tests..ect. She is already so terrified of doctors that she can't go to the veterinarian with us...if it looks medicinal than she wants no part of it.
When I am at therapy with Julianna we see all different kinds of disabilities and different levels of deformities. I pretty much feel like the biggest dick in the world for ever using the word retard as a joke. I hate that it took having a child born premature and seeing ill children in pain to make me realize that it is an intensely cruel thing to say. I get scared about Julianna being teased when she is older and I always say how mean kids can be..but, I forget how mean adults can be as well.
this is one of my favorites....
VIEW 25 of 40 COMMENTS
sheddlefty:
Your daughter is the cutest in that pic! And you're very welcome, you deserve the love and attention 
c2drobb:
I feel your pain. My daughter (also born premature) was back and forth to doctors and hospitals for over two years. I then realized that despite the fact that it was a pain in the ass (especially for a single father) it seemed to mask the worry one would normally have in that situation. Hopefully the emotional pain that you, your family and that beautiful little girl of yours have endured will pale in comparison to the joy that you will feel when it's all behind you and the doctors visits become annually instead of what you are acustomed to. Just love that little angel up because at the end of the day all that matters to her is that she has you in her life and you were there for her no matter what.