I did talk to the neurologists office who suggested I raise Jude's topamax to "two in the morning and three at night". My response? "That's already what he is on.". SIGH! So she is checking with the doctor again, and if going to call me back. She did tell me that they would like me to get him checked at the pediatricians office for a possible illness. So I was right in assuming we should take him there. It amazes me how all these chain of events begin to rationally make sense even before I talk to the doctor. The nurse also didn't have his blood results so I am unsure of what his levels of medications are in his blood. I am only hoping that he is not becoming to over medicated. So she is suppose to call me back with that information as well. She also indicated she would like Jude to see a hematologist because of the results from my platelet study. I think we will pursue that, but not immediately. I would like to get final formal answers on my issues before subjected him or Emily to any tests.
Let me explain that I had these blood tests done because of the severe platelet issues I encountered during my pregnancy. There is nothing that can be done about Jude's issues now. We will let Jude show us his pace, and we will be there to help him. Although, if there is a hereditary condition then with both the kids it is something to explore. Our lives have become more functional with Jude and have taken on more of a schedule. It can vary depending on Jude's seizures.
I do have to say that the other night we went to the store and Emily said, "Mommy what if Jude has a seizure". I replied, "Then we take him out of his car seat and help him". She looked concerned and whispered, "but everyone will stare". I said, "That is just something we will have to get used to because by having Jude in our lives he will eventually have a seizure in public." She looked a little concerned again, and I said "Em people will only stare because they will be concerned for him". She then seemed accepting.
On another note a gentlemen just came into my office for a quote, and he was completely deaf. I was very impressed with him, and he was just as nice as could be. I love seeing people overcome their disability. We communicated just fine by him reading my lips, him writing questions, etc. It was just a normal quote, and I was happy to assist him.
3 comments:
you are a great empathic person. that deaf man was lucky to come across you. i wonder if we all had a special needs child, would this world be better? you were probably the same person before your son, that is why jude is so blessed to have you.
Hey Jenn! Jude is looking too cute all stretched out in bed with his paci! I really want that outfit he has on in your new top pic! The one with the footballs! Mr. Gage has been having troubles the past couple of days and they are watching him closely. I start my 24 hr shift with him at 8am tomorrow. My 8 hr shift on Wednesday stressed me out so bad I cried emotional buckets last night and was ready to give up being a caregiver for him. But, hopefully I will feel much more confident in the morning. Hugs to your family!
Nana Vicki
Just wanted to let you know I do read your updates... Just have not had much to comment... I don't have a little one so it's kind of hard.
Yes people stair because they are curious or concerned. If Jude is having a seizure; you know what to do. You've ben trained for this... Your MOM!
Emily when Jude is having a seizure in public mom needs your help too. The best you can do is say, please don't worry, he'll be OK soon. I know it's hard, but you can be strong; and help educate others who don't know. And when it's over give him a kiss.
As for the deaf man... Cool mom! If I didn't have my cane you'd never know I had bad eyesight. Don't assume any thing when some one has a disability. I'm sure he thanked you for your understanding.
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