Too many bumps but we will get there!

Well Noah has had a few more bumps in the road this week. Since Saturday Noah has been running a slight fever around 100-101. Brought him to the Pediatrician office and they could find nothing wrong on Monday. Well last night when we got home from TOPS he was burning up so I took his temp---- 103.8!! Yikes. His heart rate was over 180 so I took him to MMC. They took a urine sample and an xray and found that he had phemonia and an ear infection and we were able to go home. They came close to keeping him over night but the doctor trusted I could treat this at home....thank god Im tired of seeing the hospital walls by now! Got home at 4am.
Today he is still running a temp. Just not as high. He slept most of the morning and afternoon and woke around 2:30pm. Im hoping that are sleep schedule is not messed up and that we are still gonna sleep tonight!

For the past two weeks Ive begun to really watch what I eat and begin to really put effort into my wieghtloss! I got the Biggest Losser Wii game for Christmas. I started a challenge two weeks ago. I've been working out at least every other day since. Although my scale had me looking foward to a huge loss yesterday I wieghed in at TOPS with a 2 lb loss last night--- happy about that but not so happy with my scale lieing to me!!! :) With my exhaustion from last night and being sore from stepping it up a little more in yesterdays workout I took a break today on my workout but tomorrow I will be right back to it.

Well I will keep you updated on Noahs progress and mine as well. Hopefully we find that smoother road soon. Im tired and emotional and could really use some luck right now!

An Allergic Reaction

So Thursday afternoon we ended up taking Noah to MMC Emergency Room. His rash was making his face swell to the point he had trouble opening his eyes. Walking into the ER the registration desk immediately interupted the nurse to come look at Noah, and with a room full of patients we were the second called out back to the ER. Doctors at first were not convinced that this was in fact an allergic reaction, and we saw many doctors in the ER. Finally they were convinced and began steroid treatment and benedryl through the Gtube after failure to find a vien for an IV. After a couple of hours Noah's rash had begun to transform for the better. After confessing my concern, they had the admitting doctors come take a look. They felt my concern about the siezures but also had concerns of their own. They wanted to keep him over night and run some blood work to make sure that this wasnt an super severe allergic reaction that would concern Noahs bladder, kidneys, etc. So they admitted him, did a finger poke to get blood, urine bag, and ran tests. Thankfully there was no reason for concern and all test came back fine. His rash had improved more overnight, and we were comfortable heading home. Or as comfortable as I would be. We have started a new med. Fingers crossed...breath held....I hope this works and there are no reactions..... although Im used to all these bumps in the road...I really preferred the smooth road that we had been traveling on before for a while. Lets hope this road meets up with that one very shortly!

Things not so good.....

So Noah has come down with a HUGE rash all over his body. His face is completely covered and swollen! For the past two days I have been at the pediatricians office. The doctors are not sure if he has just a viral rash or if he is having an allergic reaction to the phenobarbital. Im thinking that it is the later. I have a call into the doctor's and the neurological doctors office. I have heard back from the ped and she is trying to get ahold of the neuro doctor as well. She is thinking we are gonna ween him off from the med. and put him on something else. AS scary as that is... he is completely 100% miserable. And I hate seeing him this way. It breaks my heart. He was up all night and screamed for 1 1/2 straight. Nothing helps.

Lets hope I hear from the doctors soon. Gonna go lay down for a bit while I have him resting.....

Happy and Healthy

So far so good. Noah seems to be taking well to his new meds for the most part. We went to his pediatrician yesterday for a follow up. With a big surprise at the scale. Noah now weighs in at 25 lbs 6 oz! Its incredible. So proud! The doctor told us that Dr. Morrison wrote in his report that he did see some good changes in Noah's EEG with the switch to phenobarbital. YAY!! Progress! I asked him if the phenobarbital could make him cranky because he has started this *new* high-pitched scream. He siad that this could have to do with the new med but it should hopefully wear off. Lets hope so! Im so happy that he has seemed to do well on this med. Not to sleepy in the morning and afternoons I've actually thought that he seems more alert!
Today we head to his PT in Sanford around 130 and we are going to be able to pick up our "CuddleBug" his new stroller! Im so excited...
Well things here are off to a good start this 2010 lets hope it continues!

Home Sweet Home

Well we did end up going home last night. The doctor and resident spoke and came up with a plan that I could agree to. It helps that the resident that was in charge of Noah on the floor (Christopher Jons who is great!) came in and explained things a little bit. It always helps to explain to the parents rather than just state what is going to happen. I wish most doctors would learn this. However we can always count on Dr. Jons to do this thats one of the qualities that makes him such a good doctor. Anyway... so Dr Jons came in and explained that this new medicine is one of those meds that never really leaves the system. Some of it will get metabolized out but most continues to stay in his system and when more gets administered to him that dose builds on the others. This is the reason for the dose to lower. Which makes since. So this being said the doctors sent us home on the 60g dose for 2-3 days. After this we will have a blood draw (i hate those they always have a horrible time getting a vein on him) they will check levels. We are planning on lowering the dose to 45g on Monday unless the blood draw speaks differently.

Last night was our first night home and it was so great to be back with Erik and the girls and of course my own bed. The girls really missed both of us while we were gone and Marissa even made me a card expressing this. It was so special to me. Noah actually did really well. He got up once for an hour with Daddy.... a small siezure awakening him but it didnt last long and it was just a little body tremors nothing major (phew).

He actually has done very well today and has been up most of the day and has began to drink bottles again. For the past couple of weeks we have struggled with this and needed to pump him his feeds for he was coughing on his bottles. Today he has drank 8oz all by himself and I have not felt the need to pump....YAY!!! thats a relief.

Well today has been a day of relaxing and just enjoying being back in the home....time to go bake some banana bread for the hunny! **** I think he missed having his chef at home hehehehe***

Home Sweet Home...or not???

So sitting here in my hospital room ready to take Noah home...or as ready as I will ever be. Doctor called this morning and was confident that Noah could leave today. Last night they again gave him the 60g dose of the new meds and I questioned this for the night before I was told it was switching to 45g. The resident said he was confident he was reading the orders right and wanted Noah to have the 60g. We did but I made it clear that I was not going home on 45g until it has been given to him here for 24 hrs....especially after having a medium size seizure last night. The nurse said she would write this down and totally agreed with me. The doctor called this morning to inform me that he was confident that Noah was ready to go home and I stated my concern for Noah going home on 45 g when he has been only watched on 60g. The doctor stated that we would keep on 60 and do a level blood check in a week. I was okay with this. Nervous but okay. Packed the place up and got Noah ready for discharge. The discharge resident just came in and announced that Noah was going home on 45g and that Dr. Morrison was okay for us to go home...... needless to say she is calling the doctor ....... I will not take my son's life in jeopardy and go home on a new medicine and a new dose that has not been watched to make sure he isnt gonna stop breathing---turn blue----turn gray---- or put his life in jeopardy..... I dont understand how he could think I would do otherwise....
So as of right now my feet are planted and I will not move until Im comfortable with the circumstances.......

As for my car, I called the insurance company this mornign and I have a $250 deductable to fix it. I dont have that amount of money so Im screwed... Mom said Maybe dad can pull out the dents we will see.....

Good day ends in Frustration!!!!

Noah has been doing well today. Acted a little funny but I think he needs to get used to the new meds. Had a couple of small spells but nothing major. Had a nice visit with Erik and the girls It was nice to see them. I miss them alot when Noah and I are here. I cant wait to get home and back to normal surroundings as soon as his siezures are controlled.
Tonight ends in frustrations though because sometime this week my van was hit in the parking lot. No note was left and there is a dent on my passenger side front of my van. Just missed the light but dented regardless. Frustrating.....

The first night of our new journey!

So last night was the first night on the new med. And the first night completely off from the Sabril. Noah slept very well finally. He got up once at 3am and once at 530 sleeping until 8am this morning. He is very sleepy this morning but the doctor said this was to be expected. Im still very nervous coming off from the Sabril. Not knowing what to expect from him and his siezures is the hardest part. So far so good though. Doctor said that he is thinking we will be out of the hospital Friday but I might try for Saturday morning....giving us one more night to make sure of no siezure activity. Last time really scared me and I really want to take precaution. Although....sigh*** sleeping in my own bed would be nice!
Doctor came in this morning and was happy with last night and doesnt want to change anything. So we will see what today brings......

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..