Noah had an appointment with a pediatric neurologist in Los Angeles yesterday. So, Adam took the day off so we could go together. We had to leave at 6 in order to get through traffic and make the 9AM appointment. It was killer. But, well worth it. For those who don't know about Noah's history, he's been diagnosed with Generalized Epilepsy. On our way down the appointment we realized that we didn't bring all of his medical history with us and the doctor notes from his visit with the neurologist at Primary Children's in Salt Lake. So, we had to make a write up of all of his seizures that he has had. Sadly, we remembered every one, like they had just happened. I know he's only 3, so it's only been 2 and a half years since they started, but it seems like forever. But, the images of seeing your child go through something like that never fade. It made me emotional to start thinking about every one of them again.
His first was when he was only 8 months old. I panicked, and didn't watch the whole thing. I couldn't see my baby like that. It was bad enough that it had started when I was nursing him. But that one was with a fever. And then at 12 months, in November of 2005, he had his second. He ended up having an ear infection, but didn't really show signs of being sick before that, Adam was holding him then. His next was in February of 2006. Adam was at a competition for school in Reno, and I had taken Noah down to Idaho Falls. He didn't show any signs of fever or anything, but had a seizure in the car as I was driving down 17th Street. I was scared to death. I called 911 and they met me at a park, but rather than take him out of his carseat while he was still in a post seizure state, they followed me to the hospital. We spent the day in the ER with multiple tests and xrays, but there wasn't anything wrong with him. We left the ER and went to Fazoli's for dinner, where he had another. We rushed him back and he was admitted, and stayed for 3 days. It was then he was diagnosed with epilepsy and placed on a medicine. He was fine for a while until June when he had another in the car and was hospitalized. In July he started having multiple seizures a day. It was up to 10 a day, and he was hospitalized for another 5 days. He underwent EEGs, MRIs, cat scans, spinal taps, and everything came back normal, thus confirming the generalized epilepsy, meaning they don't know the cause. His medicine changed, but it caused him to experience a halt in development. His speech didn't progress for a while, and I noticed a notable change in how much he was learning. It took him a few months for his body to regulate the medicine better, and then he picked right back up and is pretty much in line with the other kids his age now with speech and things. He did have one more minor febrile, or with fever, seizure in Januray of this year, but it was te mildest he has had. Usually after he had a seizure he will cry for a while and then sleep for hours, but he was talking right after this one and didn't cry, which was a good thing. His seizures aren't life threatening, just scary. Studies have been done on seizures. And the say that each grand mal seizure, which is when the whole body convulses, is like running a marathon. So when he was having 10 a day, his body thought he had just ran 240 miles! Or however many miles a marathon is! Poor kid, he run a lot of marathons in his life! Probably around 25!
Anyway, I've gotten off track! I am just so grateful for modern medicine. And to have such wonderful doctors that are there for us. I don't know what we would do had we not taken Noah to the ER after every seizure. We were able to get great care, even though there was no real cause as to why he had the seizures, but the precautions were there so he wouldn't have any more. He has basically been seizure free with his medicine. And we are putting him on a different medicine. A medicine that does not have any learning and development side effects like the one he is on now! I am also grateful for Priesthood blessings. Noah has had many of them during his rough times. And not only have they helped him recover, but have helped us as parents know that he will be okay. He's a special kid, that Noah. We've been through a lot with him. I can always see him in the hospital, with his little gown on, and IVs in his arms and monitors everywhere, and him signing I love you to everyone and having a little smile. And when we would take him on rides in the little wagon they have. IT's so sad to have those memories. It was only for a few days out of his life, but just to have to remember him in the hospital is heartbreaking. A little boy as sweet as Noah shouldn't have to go through that. But since he does, I know that he will be okay. He's a happy kid, really he doesn't remember it. He just lives everyday, and is just happy about life. We should all be like that. No matter what is pushed at us, we should know that we can get through it. Our Heavenly Father is there to help us on our way. Anyway, to make a long story short, I'm grateful for modern medicine and the opportunity we had to take Noah to a specialist and get the care he needs.
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4 comments:
That's great that he can switch to a different medication that won't have so many side effects. Medicine sure has come a long way!
I'm so grateful for modern, effective doctors and medicine too! And just as grateful for wonderful mommies and daddies like you and Adam. Your children are adorable, so are you! I wish your mother-in-law lived next door to you, Lindsay! We love you,
Carol/Mom/Nana
Lindsay,
I too am grateful for modern medicine. Our younger daughter ha had some pretty crazy medical stuff and I agree about the hopital stays. It i heartbreaking to hold your child down with 4 other people so that they can stick them with an IV. Or to have to give them over the the anethesiologist for surgery. I NEVER want to have to do that again. Thank Heavens for modern medicine that can help our amazing kids live relatively normal lives, and for priesthood blessings for me and for my girls. Anyway, sorry for the novel, this subject holds a special place in my heart.
I don't know what to say....you said it all wonderful. We are so lucky to have the modern day medicines we have. I am so sorry for all the scary things you have had to go through with Noah. It is so hard to see our children suffer and not be able to help them. I worked in Pediatrics as a nurse before i started having babies and I saw some tragic things happen to such small people. So sad. They are things that are very hard to erase out of your mind, but luckily Noah can keep a smile on his face and keep going. I am so grateful for Doctors and their knowledge. I have relied on them so many times in my life. Keep your faith strong and things will work out. Good luck to you and little Noah.
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