Thursday, July 1, 2010

Wow it has been a while.

So the theme seems to be, I don't blog, I apologize for not blogging enough, I don't blog and then I apologize for not blogging enough. School is finally over and I was hoping that things would calm down here but things have been crazy and well I have been a bit crazy. No excuse but there it is.

I have been having a really hard time of late. I think I have a touch of post tramatic stress disorder. I say this with a smile on my face since how the heck do you just a touch of that. Anyway, a few weeks ago E started doing this strange thing with her head where she would bob it down. It was really quick, she didn't seem to even notice she was doing it. She could be in mid crawl, sitting and playing or even standing while holding on to something. It actually started a few months ago when she was eating. She would be sitting in her high chair and would do a shiver like thing and bob her head down. It seemed to happen when she was eating something cold it happened so infrequently that we felt it was just a freak thing. Well she started doing it about 25 times a day about 2 weeks ago and I freaked out. Both Shazam and I were very worried but I completly lost it. E of course was her happy self just bobbing her head alot. We made an appointment with her pedi and caught her doing it on video. The pedi was stumped so she started calling neurologists. She was having some trouble getting call backs and they were all booking into the end of July. I was starting to think it might be easier to go to med school and become a neurologist myself. We happened to have lunch with our neonatologist friend who observed the episodes on Friday. She called our pedi and within an hour of her call E had an appointment at Children's Hospital for an eeg and neuro consult on the following Monday. I don't know how it all went down but I am so glad people made things happen.

Monday we went in for the EEG which was not as bad as I thought it might be. I had to pin E down on a bed for about an hour so that the tech could attatch the 20 odd electrodes to her head and face. She cried for a little while but was comforted with a binky and her bunny, bun bun. I think she kind of gave up after a while and knew she was not going to get up so she just laid there and let it happen. I also think she might have liked how it felt to have her hair played with and the feeling of the air that they used to dry the glue. After she was all set up I had to get her to sleep. I didn't know if it was going to happen but I did get her down so that they could record her sleeping. After that we went upstairs to neurology and met with a nurse practitioner and a neurologist. The good news is that they did not see the brain activity that is seen with infantile spasms which was the biggest concern. She didn't have any episodes during the EEG (thanks e!) but we were told that babies with infantile spasms show abnormal brain activity between seizures so the fact that her EEG was normal is a very good indication. They did not think she needed additional imaging (mri or catscan) but she does need to do a 24 hour EEG. She will be admited to the hospital for this. The good news is that we will be able to stay with her during this. So instead of having to leave my beautiful baby in the hospital again we will be able to be with her while she undergoes this test. I hate that she will have to go through this but we need to get to the bottom of this as soon as possible. The neurologist thinks she is having benign myclonus of infancy. Pretty much they don't know what causes them and they go away by age 2 or 3. I hope that is the case. It is going to be very difficult to get our very active 12 month old to keep the eeg leads on her head for 24 hours but I have faith that the people at Children's will know a few tricks.

I think the upcoming anniversay of E's birth and this new health problem has brought up the trama of last summer and has made it clear that I need to process and deal with everything that happened. I know I have tremendous guilt about being the cause of E's prematurity and feel like all that she went through and is going through is my fault. Pretty much I feel like a terrible mom to have put E through all this. I have an appointment with my therapist next week and will be working through all of this and I hope to find to peace and can move on. I also have an appointment to start taking my meds again. I think the two of these things will really help. I have more to say on this but have to run. Hopefully I will have some good news to report soon!

7 comments:

Snickollet said...

Wow, never a dull moment! I'm glad you were able to get E in for the EEG, and I'm glad that you are taking care of yourself, too.

Emily said...

eek. I hope this is resolved soon!

tinshee said...

So glad you updated! I've been thinking of you. I'm also glad to hear that the docs think it's something benign. Let us know about the results of the next eeg!

K said...

I'm really sorry to hear you are struggling. I KNOW I have some lingering PTSD effects and our E was only in the hospital about 1/10 as long as your E, and his hurdles were nowhere near as scary as your E's were. I can only imagine the stress you and Shazam went through a year ago. It's a terrible, terrible experience for any family to endure. Good for you for doing what you need to take care of yourself. It can be a hard step to take. Sending lots of strength your way. (And of course, great news about the EEG. Hope the 24 hour is equally reassuring!)

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