Bug has had two glorious nights. Not only did he NOT have any events, he slept REALLY well. Which means that, in turn, Glenn and I did too.
We took him to get his blood work for the genetic karyotype last week. He was a trooper, but then again, he always is. Hopefully we will hear back this week. If there is nothing apparent, I will ask to be referred to the NIH program that Glenn texted me about. I just can't believe that with his specific symptoms, there isn't something we can find if we look in the right places.
He has been so charming and fun the last few days too. Happy and playful, seemingly very attentive as well. As I drove him to school today, he was watching the route I was taking. He was watching the buses parked along the street, following them with his eyes and turning his head. This may seem like a small event but it's actually very big. It shows that he is interested in things outside of himself and what he is doing, that he is acknowledging things around him, coming more into the world. Do we evaluate too much? Do we project onto him? Maybe a little, but when he can't tell us what he is thinking, we have to guess and we have to be detail oriented. To look at what is different and what is consistent. When the child can say to you: I have a headache, you give him or her medication. When Bug, hides under a blanket in the middle of the day, or covers his eyes, what would any parent think? We think: He has a headache. And we give him medication.
His entire life is a guessing game. And he smiles about it.
Tuesday, December 1, 2009
Sunday, November 29, 2009
Back on the horse
Bug has had a bad couple of months. It became depressing to write about all the seizures. 20 in one night...with Diastat in between sets of ten. A night with none and then a night with 8. It became too much. But I need to be more diligent...I need to make sure I keep a record of his events and his day to day activities. Starting tomorrow morning after he goes to school. I will try to catch up and stay caught up. It may become necessary should we change Doctors. And yes, we may change Doctors.
Tuesday, September 29, 2009
Hearing Assessment
Sometimes, when I get really pissed, I get really calm and my arguments are vicious. Glenn told me once he hates to fight with me. I said: Then don't. So that Friday, when I was so pissed, I called all over and talk to so many people it began becoming a blur EXCEPT...
...Tay was being Tay and was whining about going to school. So I said: Fine get in the car and we ended up being 20 minutes early. It was a sign, a big neon sign that said: GET OVER TO THE PEDIATRICIAN AND GET A REFERRAL! The kids Ped, Dr. Knorr, is next door to Tay's school. Well, Duh! So I went in and asked for the referral I needed to the Hearing Assessment Clinic at Primary Children's. They kind of hemmed a hawed a little about has Dr. Knorr treated him for this? I sighed and said this exact thing, remember, I am pissed and have slept for only a few hours: Dr. Knorr and I have DISCUSSED this but he is being TREATED at Primary Children's, I have called them but sometimes they are too slow. You see, he has SOO many seizures, 13 last night, that anytime ANY Doctor has to treat him they referr him away to Dr. Van Orman. I can not get a hold of Doctor Van Orman at the moment and so I am here, BEGGING Dr. Knorr for a referral to just have his hearing evaluated. I have been asking for this for 3 years, and over 1500 seizures later, I am still asking. I watch him seize and then he doesn't say Mamma for a few days. Please, just ask.
And they did. They called a nurse in and I said one thing to her: 13 seizures, each one takes more of his speech away and I just want to know if he can understand or hear at all. She said: No problem, I will talk to him and call you back. I blinked. Dumbfounded. Why the hell isn't SHE on the front desk?
Later that day, she called. I gave them a few days, since I KNOW how Primary Children's works, and then I called and got him an appointment. The lady was so nice. She agreed that the seizures and the speech should be treated as seperate things until someone, or some test, can link the two. I told her I was gonna kiss her when I saw her. She giggled. It was cute and I just might.
He goes in on October 8th and 10am. Prayers are needed. This is a big one.
...Tay was being Tay and was whining about going to school. So I said: Fine get in the car and we ended up being 20 minutes early. It was a sign, a big neon sign that said: GET OVER TO THE PEDIATRICIAN AND GET A REFERRAL! The kids Ped, Dr. Knorr, is next door to Tay's school. Well, Duh! So I went in and asked for the referral I needed to the Hearing Assessment Clinic at Primary Children's. They kind of hemmed a hawed a little about has Dr. Knorr treated him for this? I sighed and said this exact thing, remember, I am pissed and have slept for only a few hours: Dr. Knorr and I have DISCUSSED this but he is being TREATED at Primary Children's, I have called them but sometimes they are too slow. You see, he has SOO many seizures, 13 last night, that anytime ANY Doctor has to treat him they referr him away to Dr. Van Orman. I can not get a hold of Doctor Van Orman at the moment and so I am here, BEGGING Dr. Knorr for a referral to just have his hearing evaluated. I have been asking for this for 3 years, and over 1500 seizures later, I am still asking. I watch him seize and then he doesn't say Mamma for a few days. Please, just ask.
And they did. They called a nurse in and I said one thing to her: 13 seizures, each one takes more of his speech away and I just want to know if he can understand or hear at all. She said: No problem, I will talk to him and call you back. I blinked. Dumbfounded. Why the hell isn't SHE on the front desk?
Later that day, she called. I gave them a few days, since I KNOW how Primary Children's works, and then I called and got him an appointment. The lady was so nice. She agreed that the seizures and the speech should be treated as seperate things until someone, or some test, can link the two. I told her I was gonna kiss her when I saw her. She giggled. It was cute and I just might.
He goes in on October 8th and 10am. Prayers are needed. This is a big one.
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