New News

So last night wasnt much better for Noah and myself. I saw very little siezure activity but he didnt sleep very much either. Finally got him to sleep around 3 am and was awake around 430. At 530 he slept for 2 hrs and really hasnt napped much today.
The doctor came around 5pm tonight and thinks that Noah may be having trouble sleeping because its a new environment for him, the wires could be making him itch and he cant tell us, or he could be having a withdrawal from the sabril. He also said that he thinks that some of Noahs movements that we see are not siezures afterall just movements and that some of the seizures that look like his infantile spasms have returned are just siezures and not infantile spasms. Tonight he is taking him completely off from the Sabril and putting him on a new med called Phenobarbital. This med could cause him to be sleepy. So its really hard to decide whether we keep him on a drug to make him blind or a drug that could make him sleepy. But I figured we could try this new one and if it does take this kind of effect on him then we will stop. But its worth trying to save his vision! And Im more comfortable with taking him off and switching while in the hospital and not at home after this spring's episode! It makes it a little less stressful knowing that he is going on something to replace Sabril too.
Tonight they are also giving him some benadryl in hopes that if the cap is keeping him up due to being itchy it will help as well.
So crossing our fingers for sleep and a healthy happy night.....I end my post!
Update tomorrow afternoon!

Update

Doctor came in and said he has not seen any ***BIG*** siezure activity on Noah's EEG yet. Sometimes it takes more than once to see one to understand the brain waves. He has decided that it is okay to decrease the Sabril dosage again tonight. We are again cutting it in half again. This is where the problems began the last time so I am holding my breath, praying many prayers, sick to my stomach, and scared to death. Trying to think positive and will this to work this time. We will see what tomorrow brings. My parents will be visiting around 4-5 tomorrow and I will post an update then.

Hope he sleeps better tonight.......Im exhausted....but I dont know if it much matters how much he sleeps...I may be to nervous to sleep well any way.

Good night all....PLEASE keep the prayers and good wishes coming our way! Thanks for all the support.

Until next time.........................................................................................
Good night! We love you all!

The first night

So the first night was ok here at MMC. Noah didnt sleep very well at all last night. I think it was probally a combination of many things. They are playing with his meds, he is in new surroundings, and he has all these wires glued to his head and doesnt understand what is going on. So far things are going ok with the med changes. He had a small siezure this morning but it was nothing major just the usually siezures he has been having.... as you can see from the picture this morning he was his happy- go- lucky self enjoying all the attention from his nurses and EEG tech. Nothing changes when we go into the hospital he gets spoiled here too. Last night Noah was held by grampa who always makes sure that Noah doesnt go without while we are eatting---Noah got some Chocolate Ice Cream!!! And as usual loved it!

This morning Noah recieved a stuffed dog with a winter hat on its head and scarf. Soft and cuddly. He played with it a little bit...and mommy even got some smiles for the camera

So far so good.....

We are here at MMC. So far everything is going okay. Noah was hooked up at around 4pm to the EEG and the doctor came in and talked with us. We are going to try to take him off the sabril at a slow pace. Tonight we will split the dose in half and see how it goes. Its very scary for me but in the long run it will be better if we can get him off the sabril. Sabril can cause vision loss of the peripheral vision and doctors have stated that Noah ONLY can see peripherally.

So with fingers crossed and a nervous physique we enter the night lowering meds and hoping for the best.....

................................................to be continued

Recent Picture

Just another recent Picture ~~~~~ Noah in his Brady Jersey~~~~~~~~~~~

Read Blog Below for update!!!

Recent Picture and Update!!!

Look at him hasnt he got SO big.... We are improving more and more everyday. Lets pray that 2010 is our year!!!

I havent posted in a very long time...my apologies...Life just sometimes gets the most of me.Happy New Year Everyone!

Noah has been doing pretty good lately. He is getting so big. About 24lbs now! Can you believe it? There was a time when I didnt think we were going to get past 18lbs! Now he's 24 lbs and 3 ft tall. We are really working on trunk control and head control. His head control is coming along nicely... we started working with him with the sippy cup and he was drinking milk so much better through out the day---- however he has phemonia right now and I'm wondering if he is aspirating while drinking through the sippy cup. I have stopped the cup for now and after the phemonia is gone we will try again.

Today I am busy packing....for Noah and I are going to stay at MMC for 3-7days for some testing. They are hooking him up to an EEG for at least three days in hopes to see what his brain is doing and how often he is having siezures. Its usually a three day process but if he doesnt have any big siezures while testing it could take up to 7 days! I'm not excited to leave my home and my nice comfy bed or family but I hope we get some answers--- Im really excited to get some answers.

Well off to finish packing...while in the hospital I will keep everyone posted..

Happy Holidays

SO...... it always gets to be around this time of year and I become the world's most horrible blogger. Life has been hectic! I know its not an excuse but in my defense with the amount of sleep I've been getting lately its really quite amazing that Im still standing and getting through the day.

Noah health wise (knock on wood) has been great. We had one episode about a month ago that he had a severe ear infection and a viral infection that sent his heart rate over 200 and his tempature over 104.00 degrees and we got admitted into the hospital for 4 days. They precautioned him and thought he might have H1N1 and after many needles they finally got blood to result in a negative for the flu. We went home and became a germafobe.
So we have spent a lot of time staying in the house. I go around the house with Clorox Wipes at least once a week, and have a bottle of GermX next to the door so that when we walk through the door, thats the first thing we do.

I say Noah's been healthy...which is the truth. We are struggling with sleeping. Im not sure what is going on. Not that Im counting or anything but we have gone 23 days where we put Noah to bed at 10:30pm. He wakes at 11:30 either having a small siezure or not. Is awake for 1 1/2 to 2 hours and then is up every hour after that. Out of those 23 days he has slept through the night 3 times! Im exhausted and Erik is exhausted. I have finally broke down and called a company called MAXIM that provides Night Time Nurse help. We are going through the process and hopefully will have a nurse coming into the home sooner than later to help me at night. I have mixed feelings about this but I know that I cant keep going without sleep...Im so close to just running straight into a wall!

Family life is going ok. Stressful because we are both tired and can get angry over the smallest things. But I know we will survive. Having the big family I've always wanted is nice and I love it. Erik truely completes me and makes me happy. He is a great dad to Noah and I'm happy I opened my heart again.

SO in the event of Thanksgiving being tomorrow.... I'm thankful for having my big family I have always wanted, Thankful for Erik being my rock and love of my life, thankful for Noah and that this year I think has been all and all easier than the last, and thankful for friends, family, and all of you that support us each and everyday and make all our struggles a little more easier knowing we are loved and thought about. THANK YOU ALL! WE LOVE YOU.