So the neurosurgeon looked at Kenny's U/S today, and feels that it looks stable for now. So now we go back for a follow-up appointment in about 6 weeks. They told me that because of the PVL that sometimes these kids have dialated ventricles which you don't see in normal people, but that could be their norm. If I notice anything though I call and tell them, and they will see him right away! So I think that this is the first time I have actually left Children's hospital with not so bad news in regards to Kenny.
On another note, Kristen! WOW!! That's all I can say! She is mimicking all speech! I have waited sooooo long for that! She even know's her own name now! It's just been so exciting to see her thrive so much now.
Thursday, April 29, 2010
Wednesday, April 14, 2010
Thursday, April 8, 2010
Finally, not bad news
We had our follow-up EEG for Kenny today to see if the anti-seizure medication is working or not. The neurologist was please with the effects. He wasn't seizuring nearly like he was. And developmentaly he's a different child. So the plan...keep doing what we're doing! No injectable steroid! YAY!
Then we were sent up to neurosurgery. They were reviewing the films of his head ultrasound two weeks ago. Kenny has a big head, and the ventricles in his brain look like they may be dialating. The thought...it may be the PVL and his brain not growing 'normally' so it's replacing the empty space with fluid, or it could be hyrdrocephalus. So the plan, wait three weeks and repeat the U/S. I just have to hope and pray that there are no changes between now and then and that it's not something that we have to VP shunt.
Joe had a performance today with his Kindergarden class. He had his first school bus ride to the Performaning place and got to do a dance with his class. I was very sad that I had to miss this, but Daddy went to watch. I will get to see it at an assembly later this month. So I'm not too disappointed, well I am, but oh well. I know that there is going to be many days where I have to make these decisions and can't make it to everything!
Then we were sent up to neurosurgery. They were reviewing the films of his head ultrasound two weeks ago. Kenny has a big head, and the ventricles in his brain look like they may be dialating. The thought...it may be the PVL and his brain not growing 'normally' so it's replacing the empty space with fluid, or it could be hyrdrocephalus. So the plan, wait three weeks and repeat the U/S. I just have to hope and pray that there are no changes between now and then and that it's not something that we have to VP shunt.
Joe had a performance today with his Kindergarden class. He had his first school bus ride to the Performaning place and got to do a dance with his class. I was very sad that I had to miss this, but Daddy went to watch. I will get to see it at an assembly later this month. So I'm not too disappointed, well I am, but oh well. I know that there is going to be many days where I have to make these decisions and can't make it to everything!
Thursday, April 1, 2010
Joe's so cute!
So whenever we ask Courtney "who did it?" She say's "Joe did it!" Joe has started to notice that we ask her this just to giggle at her because it's way too funny that she always says it. So yesterday we're at the table eating lunch and Joe look's over at Court, and says "Court....Who did it??" She looked at him and didn't know what to say!
Today he came home with a little easter basket that he made at school with a couple of hershey's kisses in it. He proceeded to take one kiss out and gave it to Courtney and said "this is for Court" and then handed one to Kristen and said "this is for Kristen" It was just so precious!
Today he came home with a little easter basket that he made at school with a couple of hershey's kisses in it. He proceeded to take one kiss out and gave it to Courtney and said "this is for Court" and then handed one to Kristen and said "this is for Kristen" It was just so precious!
April fools day!
I'd like to start by letting my husband know a very happy birthday to you today. We had a great birthday dinner of Burger King and whopper's...lol.
On another note, the Dr's office called today to let me know the head ultrasound results were back for Kenny. I always know when a Dr call's you at home it's NEVER good news. And of coure, again not good news. Both of Kenny's ventricles in his brain are a bit dialated compared to his last head ultrasound. What does this mean. Well it could be a sign of hydrocephlas. This means that his brain isn't draining the spinal fluid off properly and it's potentially causing pressure on his brain. If it's not monitored or followed closely, there can be deadly reproctions. How do the fix it, well they put in a VP shunt. An artificial valve that helps to drain the fluid down a tube that ends in the abdomen. The fluid is then just absorbed by the body. I wish that there wasn't so much bad news with Kenny, and we could just enjoy the baby stage.
On a really happy note, his med's have been making him not spasam as much, and we actually have a happy Kenny over here! We can put him down on the floor and he's actually happy!! It's quite amazing! It's like we have a happy 3 month old baby on our hands. So that's great! He's even seeing better lately! It's been so great to smile at him and have him smile back! And for him to be cooing and gooing!! I pray that the dialated ventricles heal, and begin to work properly. I pray that I don't have to go to the next type of medication for his infantile spasams (it's injectable). I pray that he continues to be on the developmental up swing that he's on right now. i pray that I can really enjoy him as a baby!
On another note, the Dr's office called today to let me know the head ultrasound results were back for Kenny. I always know when a Dr call's you at home it's NEVER good news. And of coure, again not good news. Both of Kenny's ventricles in his brain are a bit dialated compared to his last head ultrasound. What does this mean. Well it could be a sign of hydrocephlas. This means that his brain isn't draining the spinal fluid off properly and it's potentially causing pressure on his brain. If it's not monitored or followed closely, there can be deadly reproctions. How do the fix it, well they put in a VP shunt. An artificial valve that helps to drain the fluid down a tube that ends in the abdomen. The fluid is then just absorbed by the body. I wish that there wasn't so much bad news with Kenny, and we could just enjoy the baby stage.
On a really happy note, his med's have been making him not spasam as much, and we actually have a happy Kenny over here! We can put him down on the floor and he's actually happy!! It's quite amazing! It's like we have a happy 3 month old baby on our hands. So that's great! He's even seeing better lately! It's been so great to smile at him and have him smile back! And for him to be cooing and gooing!! I pray that the dialated ventricles heal, and begin to work properly. I pray that I don't have to go to the next type of medication for his infantile spasams (it's injectable). I pray that he continues to be on the developmental up swing that he's on right now. i pray that I can really enjoy him as a baby!
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