The Marinellos

Friday, November 6, 2009

Rough week!

Here is Seth trying rice cereal out for the first time. He was not the biggest fan of it but yet he still liked it. I think he enjoyed something different going into his mouth but it didn't last long.


18 weeks eatin some rice cereal.





Enough already!


Oh he is so cute...what a little muffin!



Well last Saturday I look Seth into the doctor because he had some mucus in his urine and was running a low grade fever again. On Monday they called and said that he did not have a UTI. I asked how is that possible when he has mucus in his urine, they said I needed to call the urologist. I called and asked them and they said he might be dehydrated. That was such bull crap in my eyes but I just kept an eye on Seth for the next few days. By Wednesday afternoon his fever was getting up to 102.7 so I knew that something was going on. About 4:00pm I started feeding him a bottle while talking on the phone with Lis. By 4:35pm he threw up EVERYWHERE! When I say everywhere I mean EVERYWHERE. I was totally covered and it just kept coming and coming. So I ended up having to take him to the urgent care and he in fact ended up having a UTI. Out of everything that has been wrong with this little boy his kidney reflux has caused the most problems. I can not wait until we can have the surgery to get it all fixed.

This past Tuesday Seth had another test done. This time it was an EEG which looks at his brain activity. I have been wondering about this test for a long time because the last time we saw the neurologist he mentioned seizures to me and wanted to see if Seth gets them...that was in September. So the test was about 2 hours. We got to Phoenix Children's at 9:30am and got into his own room. The nurse then proceeded to attach 24 wires to his little head and then cover his head in gauze so that he wont pull the wires off. We had to get a reading with him asleep, awake, and with a light flashing. We did the awake part first and the light and then finally he fell asleep for a good 20 min and they were able to get a reading while he was in stage 2 sleep which is what they wanted. So we finally got out of there by 12:15 and headed home. But this morning was the hard part...Dr. Bernes called with the test results.

The doctor called and said that his brain activity is definitely not normal. In the 2 hour study Seth had about 7 seizures. The test studies the brain activity and also has a camera on Seth at all times so that they can look and the paper showing activity and then also look at Seth on camera at the same time. The seizures were so short that you could not even tell Seth was having them. But there are so many different kinds of seizures so sometimes you would not know. We have no idea right now if the seizures will get worse or not but for the time being he is going to be put on anti-seizure medication called Keppra. We will just have to keep repeating these EEG's for a while to see if the brain activity gets worse or not. The seizures can get worse at any time because the brain can shift or really anything can happen and he can get one that is much worse or lasts much longer or just the type of seizure changes. Right now the seizure can be as simple as a stare but it could turn into his entire body convulsing. We will just have to wait and see what happens but hopefully the Keppra will stop them all together.

Lately we have been having a lot of test and exams done for our little muffin and I keep telling myself with each thing that comes up that is small issue that I can overcome but when you have all these little things adding up it becomes huge to me. But for some reason the seizures are the things that scare me the most. I so did not want this for my little boy...I mean no one does but I really prayed for this. I know that there is a reason but I am so not seeing it right now. So if you think about it please pray for me and that the medicine will work and we can keep the seizures away!

1 comment:

  1. HUGS hun...what an ordeal to go through the only solace I can think of to try and hand you right now is that with absence seizure activity being shown on that eeg you caught something early before it could have an effect on other developmental areas and the something you caught now does have some medical treatment options to try out...hopefully you all will find the right treatment soon. PRAYERS

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