Slow but Steady

So Noah is doing ok. On a phemonia standpoint the doctors are very pleased with his progress. On a siezure standpoint he is still fighting very hard to get better. These siezures are tough for him and hard on his little body but he is doing ok.Wednesday we saw slow progress and was still worried that things were going to go south. He was having less siezures but was still not waking up and being himself much. We saw the "noah personality" maybe once or twice all day.

Yesterday Noah was awake a little more throughout the day. When awake he would babble a little and a few times even smile. I sat him up in bed and he was even trying to hold his head up even with all the wires and etc on his head. Im hoping that this means good news for the days ahead. But we will have to wait and see. The doctor came in yesterday and said that he was happy Noah was making progress. It was slow progress but it was progress. He (like all of us) wants to see that continue but if it doesnt there are a couple options. There is a couple siezure drugs he would like to consider choosing between & trying to help but the side effects I do not like. One drug he has been on before and the side effects deal with the eyes and blindness and the other drug has a rare chance of messing with the bone marrow and although it has never happened in children can become fatal, rarely this has happened....but there is always the chance........ I really hope he continues to improve and that I dont need to make this decision. The other option is still in place if he does not continue to improve they are still talking about putting him in ICU with a breathing tube to give him stronger meds to stop these siezures. I hope this doesnt happen either.
Throughout the night last night Noah seemed to improve siezure wise. I only saw one siezure at 10:30pm and then no more. He was more himself too because he wanted to stay up till midnight!!! :)
This morning he is beginning to run a temp again and is more congested. I hope that he is not getting sick with a cold again or phemonia coming back.... this battle is one thing right after another.

We will see what today brings.... he is still hooked up to the EEG monitors... but he might get off the monitors tomorrow.... because the doctor has seen the siezures on the monitor and they are easy to diagnose with the human eye now. I hope so I havent really been able to hold my little man with all the wires on his head. So Ill be happy to be able to hold him when he gets off the machine!

Well we will keep you all posted. Keep prayers coming!

Rough time

Tuesday I got a call at work from mom saying that Noah had blood in his diaper from urinating. We rushed him to the pediatrician who sent us for some tests. We had a ultrasound done on his bladder and kidneys and also an xray. They also took a urine culture. The results came back as normal for all except that there was infact blood in the urine. We were scheduled to see a specialist.
Noah decided he had another idea. It came on quickly this time and is a rough one. Thursday night Noah began running a small temp and wheezing a little bit before bed. We gave him a xophenex nebulizer treatment and tylenol and went to bed. He was up every hr having some issues. His temp was getting higher and higher and his heart rate began racing over 200. At 7 am Friday morning I took his temp and it was 103.2 and his heart rate was 210. We got a ambulance ride to MMC.

They found that Noah had a very SEVERE phemonia. The worst that they have ever seen Noah have. They also did some lab work and found that Noah had a bacterial blood infection. He was strarted on IV antibiotics. They also did a ultrasound and found crystals in his urine. The beginnings of kidney stones. He is at risk for these with the ketogenic diet and one of his anti siezure meds. They have been flushing out his urine with IV fluids and started him on a med to help prevent this today. For the past 3 days while in the hospital Noah has not been himself at all. Sleeping all day only stirring for brief seconds and then sleeping some more. I kept questioning this but the doctors felt that it was due to him being so sick. Today I brought it up again because he really never awoke yesterday at all, and this worried me. The doctor ordered an EEG right away. The results came late this afternoon and it showed that Noah was having a continuous siezure-- never coming out of it. This making him sleep and hard for anyone to notice. He was given IV adivan (two doses)to hopefully stop them and the team of doctors were surrounding him immediately ready to take the next steps if need be. He was hooked up to a 24 hrs video EEG. The doctors waiting to hear if the siezures were being controled of if Noah needed to be brought to the ICU where they would put in a breathing tube and give him stronger meds to get these siezures under control. The DR said that typically these siezures types will not cause damage to the brain, that it is more the convolsive ones that do. Im worried because we dont know how long he has been having them it could have been the whole three days hes been sleepy.
Luckly, He began to slowly begin showing short bursts of himself. The doctor came back and said there was improvement and then they decided to give him some IV Depakote because his Depakote level was low. And then it was a waiting game still. Just a few minutes a go a resident came in and told me she had just got off from the phone with the DR and he had said there is no siezure activity at this time. Hopefully it stays this way when the meds begin to wear off. Tonight is touch and go and will be a long waiting game. Please keep him in your prayers. I love him so much. I am so scared. Hopefully he will come out of these siezures, get healthier and be home before we know it. Hopefully these siezures have not caused any brain damage and he is the same smiling handsome boy he was. We can only hope and pray and wait.....

1st Day of Preschool

Today was Noah's first day of Preschool at the Morrison Center. He really only had a half day today because we had to finalize his IEP before he went to class but he seemed to enjoy it. When he first got to the classroom he thought it was nap time. But he woke up in time for "cooking time" and seemed to enjoy the different sights, smells and noises. He was full of smiles as the hand mixer was being brought around the room for each "friend" to take a turn with. There was a switch "button" attatched to mixer and if Noah pressed the switch it would activate the mixer. He did it a couple of times and was full of smiles.

He also participated in helping the teacher pour the flour mixture into the bowl. He was blowing rasberries and talking the whole time. Even said what sounded like "yum."

This is going to be such a rewarding opportunity for him I can already see this. They are really going to do wonderful things. He returns on Wednesday. He is going to be doing 3 days a week/ 3 hrs with nursing supervision in case of siezures. My LITTLE man is growing up.

Friday he is going to Boston Childrens Hospital for his ear tube surgery. WE are going down thursday morning for Pre- op appt. then we will stay the night for surgery in the morning. Because any surgery is considered high risk because of his siezures Noah is being admitted overnight just for observations. Hopefully if everything goes right he will be home Saturday afternoon.

We tweeked the formula a little. Putting him on a 3:1 ratio and increased his Depacote med to 1/2 pill more in the afternoon and siezure control is great! So excited for him. This is going to be our saving grace. Siezures have a lot to do with how well we progress hopefully this ketogenic diet is the answer to our prayers.

We love you all. Keep praying for us! Keep looking back to our page for progress!