Thursday, December 03, 2009
Hospital Day
10:27 PM
Today was another hospital day for us. Liam had an EEG in the morning, then we met with Liam and Olivia's neurologist in the afternoon. Liam still is having seizure activity in his frontal lobes, especially while sleeping, which is what I was trying to tell them back in September a couple weeks after our visit. When he naps during the day his eyes are often half open, and not rolled back at all. He is also very "jerky" is the way I'd put it, very restless and his limbs often twitch. He upped Liam's evening med dose, so we'll see how that does.
Olivia's other doctors called this morning on our way in to town to ask when we were coming to the neuro appt. She said that Olivia's neutrophil counts were 710 and quite low and they were concerned and thought it could be related to either her seizure med or one of her HIV meds. I was stunned for a moment, because her counts being low is certainly not news. She made it seem like I didn't know about this at all and was basically acting how I thought she should have acted after they first got these results, and before our next three month appt when we first found out, and then again a week later when we confirmed they were still low at this past appt. So strange! I questioned it and she said she had talked to the doctor about it and he was concerned and she wanted to keep me in the loop. OH, so you hadn't talked with the doctor before and now that he's concerned you are too??? OK, whatever. Anyway, she talked to Olivia's neurologist about lowering her seizure med since that could be the one causing it and I was not happy about that. Her counts have gone low before and a med was changed, before she began her seizures. She's been on this med quite some time and it's done wonders for her seizures, plus they have said from day one that this is the best and safest seizure med for her and her type of seizures. ! He is going to cut back her morning dose, and said that he could also cut back her evening one as well if need be, but that's it. I agree. I know I'm "just a parent" but I don't think it's that med. Either something else is going on or it's one of her other meds. I don't like playing with her seizure meds at all, they were bad when this all started and I think we had a year or more of other symptoms before it was diagnosed. I DON'T want her to go back to some of those issues again at all! :( Definately praying for the doctors and for whatever is going on with her counts.
Olivia's other doctors called this morning on our way in to town to ask when we were coming to the neuro appt. She said that Olivia's neutrophil counts were 710 and quite low and they were concerned and thought it could be related to either her seizure med or one of her HIV meds. I was stunned for a moment, because her counts being low is certainly not news. She made it seem like I didn't know about this at all and was basically acting how I thought she should have acted after they first got these results, and before our next three month appt when we first found out, and then again a week later when we confirmed they were still low at this past appt. So strange! I questioned it and she said she had talked to the doctor about it and he was concerned and she wanted to keep me in the loop. OH, so you hadn't talked with the doctor before and now that he's concerned you are too??? OK, whatever. Anyway, she talked to Olivia's neurologist about lowering her seizure med since that could be the one causing it and I was not happy about that. Her counts have gone low before and a med was changed, before she began her seizures. She's been on this med quite some time and it's done wonders for her seizures, plus they have said from day one that this is the best and safest seizure med for her and her type of seizures. ! He is going to cut back her morning dose, and said that he could also cut back her evening one as well if need be, but that's it. I agree. I know I'm "just a parent" but I don't think it's that med. Either something else is going on or it's one of her other meds. I don't like playing with her seizure meds at all, they were bad when this all started and I think we had a year or more of other symptoms before it was diagnosed. I DON'T want her to go back to some of those issues again at all! :( Definately praying for the doctors and for whatever is going on with her counts.
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About Me
I am a single mom to four amazing kids; each of whom just happen to have been adopted. The first three were adopted through foster care, and we just completed an international adoption from Haiti. Our family has grown through adoption and I am all the more blessed to know each of my children. I worship a mighty God, teach Special Ed, love bargains, and am inspired by Pinterest... come along with us for the ride!
Olivia - 14
![Olivia - 14](http://2.bp.blogspot.com/-gt-UZgt_CpM/T_-Ux4bt0KI/AAAAAAAAHvo/qSaFXWHEt-k/s260/IMG_5190.jpg)
Braeden - 11
![Braeden - 11](http://3.bp.blogspot.com/-EmU8kosz61M/UAF8xSoK8CI/AAAAAAAAHxE/8x2yNPQJmn0/s260/IMG_0836.jpg)
Liam - 9
Macy - 5
![Macy - 5](http://1.bp.blogspot.com/-VQG1eut912k/Uwa1KiNKURI/AAAAAAAAKj0/Un_BQU7zqck/s1600/Emmanuela.jpg)
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What you should know about HIV
-HIV can NOT be spread through casual/household contact. HIV is not spread through hugging, kissing, shaking hands, sharing toys, sneezing, coughing, sharing food, sharing drinks, bathing, swimming or any other casual way. It has been proven that HIV and AIDS can only be spread through sexual contact, birth, breastfeeding and blood to blood contact (such as sharing needles).
- HIV is now considered a chronic but manageable disease. With treatment, people who are HIV+ can live indefinitely without developing AIDS and can live long and full lives.
- People who are HIV+ deserve to be treated with love, respect, support and acceptance as all people do.
Additional information on transmission of HIV can be found on the Center for Disease Control website: http://www.cdc.gov/hiv/resources
Other Awesome Blogs
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4 years ago
Orphan Crisis
• 147 million orphans in the world
• 50 million orphans in Africa
• Every 14 seconds a child is orphaned by AIDS
• 16,000,000 have been orphaned by AIDS
• Every week, AIDS claims as many lives as American fatalities in the Vietnam War
• 854 million people do not have enough to eat
• Malnutrition is associated with the deaths of 5 million children under the age of five
• Every 2 seconds an orphan dies from malnutrition
• 50 million orphans in Africa
• Every 14 seconds a child is orphaned by AIDS
• 16,000,000 have been orphaned by AIDS
• Every week, AIDS claims as many lives as American fatalities in the Vietnam War
• 854 million people do not have enough to eat
• Malnutrition is associated with the deaths of 5 million children under the age of five
• Every 2 seconds an orphan dies from malnutrition
Hence the title of my blog
Little Did I Know
Little did I know that the road would be so rocky
Little did I know that the trip would take so long
Little did I know that my heart could hurt so much
Little did I know that God is never wrong
Little did I know that love could be so powerful
Little did I know that a dream so far could go
Little did I know that God would place the right ones
Little did I know that my heart, so large, could grow
Little did I know that a dream has it’s own timing
Little did I know that this day would finally come
Little did I know that four souls would be sent to guide me
Little did I know that they would choose to call me mom
But God knew all along and He had a plan to follow
God knew all along that my dream would soon come true
God knew all along that we five should be together
God knew all along that I’d share it all with you
Little did I know that the road would be so rocky
Little did I know that the trip would take so long
Little did I know that my heart could hurt so much
Little did I know that God is never wrong
Little did I know that love could be so powerful
Little did I know that a dream so far could go
Little did I know that God would place the right ones
Little did I know that my heart, so large, could grow
Little did I know that a dream has it’s own timing
Little did I know that this day would finally come
Little did I know that four souls would be sent to guide me
Little did I know that they would choose to call me mom
But God knew all along and He had a plan to follow
God knew all along that my dream would soon come true
God knew all along that we five should be together
God knew all along that I’d share it all with you
2 comments:
Praying for you all- seizures are so scary- i pray they settle down with meds and that olivia's counts go back to normal!! Hang in there!
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