So today we went to the Neurologist and it turns out that his most recent EEG came back with one abnormality it only lasted 30sec. and it was only one spike but this is enough for him to be diagnosed with having seizures. I'm not sure how i feel about this it makes me feel like a good mom because i was able to recognize a seizure when i saw one but it makes me feel sad that i was right. i was hoping that my eyes were playing tricks on me but they are not.
This got me to thinking of all the unknown things he will be diagnosed with in the future. He sees A Developmental peds, a Geneticist, an Immunologist, Opthomologist, ENT, Cardiologist, Pulmonologist, GI, Urologist, Orthopedic. What else will they find. I'm glad that they find this things but why does he have to have so many things going on.
Then his cough is back, It seems to go away for a while to make me think that what we are doing is right but it just comes right back like it was never gone. It is so frustrating to see him get better with a new thing then go right back after a couple of weeks of taking it. its as if his body got used to it. I guess i just need answers even if they are hard to hear (like today with the seizures) i need to know whats going on, i need someone who will find what is wrong with him.
Beware of the Afternoon Nap!
4 years ago
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4 comments:
You are doing an amazing job Angelica. Discovering all of the medical issues is hard. You are finding out everything that is "wrong" with Jesus, it just takes time and lots of appointments. Make sure to give yourself a break though and take a few days, or even a week off of going to appointments. You need is and so does your family. I wish I would have done that at times a year ago because I could have recovered a little...but I didn't and it wore me to a frazzle.
All of what you are going through is so similar to what we have gone through with Nathan.
I'm thinking about you and sending you big hugs.
By the way...I love your Christmas picture!
Hang in there!! You are going through the worst of it right now, the "finding out" but there will be a time when you don't have any appointments. I remember looking at a doctor and saying "no way!!" when he told me that we didn't have to come back for a whole year!! It gets better but I agree with Brandi...take a break.
Yes, don't kill yourself trying to find all the answers in the next month. My advice is to have a specialist appointment no more frequently than once a month...for your own sanity of processing the information and just because you can't be running around all the time.
And you'll soon find that you know much more about Jesus' medical issues than any doctor...not great comfort, because we want doctors to know more than us...but good to know the reality.
You're doing a wonderful job, and it will get easier...it's not going to be like this next year.
Yes I agree it will not be like this next year. The first year is so hard. I remember feeling like I lived at the DR, It was so frustrating and scary. You are doing an amazing job.. Hugs.
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