We had another OT therapy session today. I feel like a broken record when it comes to discussing Brooklyn's issues but I'll be honest and say it's consuming me. I worry day and night about her diagnosis, her future, the months and months of therapy she is going to have to endure. It all makes me so sad. I feel helpless. I am helpless. I brought up a few of my concerns which Janet was concerned about as well and said that I should take videos of her and bring them to her neurologist appointment on the 27th. I've mentioned her eyes before but other concerns are that she has been jerking her body to the right when holding her in a sitting position. She said she could feel all her muscles stiffen and contract and felt the movement was involuntary. Along with that she is also making an odd facial expression that happens randomly. B also has frequent staring spells that last 10 second or so. You can say her name over and over again or snap your fingers and she is just in another world. They happen off and on all day. She said she thought they were a type of seizure called "Absence seizures" and after reading about them it seems to be what I'm seeing. I'm going to speak to the Dr. about it and try to get a few video clips to share with him. I'm also going to start keeping notes; how often does she have them, what is she doing when she does have them, how long do they last etc. Could there possibly be anything else wrong with this poor girl? I know with many of the neurological and genetic disorders there are a list of symptoms they have and she certainly has her fair share.
2 comments:
I am so sorry that you and Miss B have to go through this. I check your blog every day and you don't sound like a broken record. I would be all consumed too and there is NOTHING wrong with that. Brooklyn will get the best care from you because of all of the research you've been doing and all of the time you put into doing the right things for her. I can't imagine what you are going through but you are such an inspiration.
Amy I wish I could physically be there to give you a hug and a pat on the back and tell you everything will be alright.I understand your helpless feeling.You don't sound like a broken record you sound like someone searching for answers.I hope you get some answers soon to put your mind at ease a bit.
She is just so cute and I love how she is so photogenic. On a side note I have to mention that all the cute clothes you put Miss B in are just too cute.Her little hoody is just adorable too! Love ya girl!
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