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!

2011 New Adventures to Come

Happy New Year to everyone. I know that 2011 is going to bring lots of joy and happiness to my family. AS we begin this year I look back on all that I have overcome and know that throughout the next year there will be new adventures for me to go through but I am ready.

Noahs ketogenic diet is going quite well and I am so HAPPY that we went this route on our journey. He is so much more alert and is full of so many smiles!!!
He is gaining weight and along with that is strength. It is so wonderful to see the progress he is making everyday. A few months ago when we picked him up to bring him to the car (or somewhere, anywhere) he would just flop onto our shoulder and lay there. Now it is so hard to carry him to the car because he is very often trying to pull his head up off your shoulder. It is so WONDERFUL. Another wonderful thing that is happening lately is how well he is sitting. Still with help and support but with a whole heck of alot less support than even a few months ago. I can usually hold him with one hand and he holds his head up and sits there. Somedays I cannot do this but the days that I can I really cherish it. He gets tired quickly sometimes but I would give ANYTHING to get his sitting on his own by the end of 2011. The other day I was holding him on the couch and he was doing a GREAT job~ well I slowly eased up on the support I was providing for him until I was giving no support at all. He sat there for 3-4 sec before realizing I wasnt holding him and then threw himself back. But I was so Excited for those 3-4 sec.
The last few weeks we have struggled with siezures again. Some where he stopped breathing and I was getting disappointed but even in my disappointment I told Erik many times that I wasnt giving up on this diet because even if it wasnt providing him with complete siezure control it was giving us so many other benefits with his strength and alertness I didnt want to give up. After some more changes with the formula and meds he is ALMOST siezure free again! (knocking on wood~ he still is having a few but very small ones)
On January 4th we went to Boston and met with an ENT there to talk over the subject of ear tubes with him. We went for a hearing test but were unable to get the test with Noahs conditions. They need to do the test in the OR. So it was decided that FEb 11th Noah is going to have tubes put in down in Boston and the doctor has ordered a hearing test while in the OR and also we will stay overnight to make sure there are no complications. So another adventure here we come. Im nervous about surgery although they say its a very easy and non invasive surgery however with Noahs siezures its always nerve racking to have him under anesthesia but we will be in Boston and I know everything will be ok. While at Boston for the hearing test I did hear something that made me smile. We have been told that Noah will never develop past a 3 month old development. But again we shall prove them wrong. While in one of the test we where telling the women that he says "mom" and sometimes "dada" and "nana" and the women says constanances such as "momma" are more a 6-9 month old development. So maybe there is more hope to hold on to.
School will hopefully be starting soon for Noah CDS will recieve the signed placement form for him this week, and the Morrison Center has a spot open for him. This brings many emotions to play but I am excited for him to get this opportunity. My little man is growing up.
I was looking at pictures tonight of just last year. And its amazing how fast time really does fly. How fast children grow up right before your eyes and you just dont see it (***TEAR***)ITs just like you blink and they are not a baby anymore they have grown into a toddler right before your eyes. I cherish everyday I have with him and although I feel overwhelmed and upset that he hasnt made milestones I have hoped for I never give up. We have proved doctors wrong so many times already I know there are more things to come.

I cross my fingers and hold on to the HOPE that is in my heart everyday that 2011 is the year that will bring so much to Noah and myself. Thanks to all that support and love us. I couldnt be as strong as I am without your support! We love you...

Hoping for a Great 2011

So I hope everyone has had a wonderful christmas this year. We had a great holiday this year. Noah is still progressing with this new diet and things seem to be moving foward. We went for his follow-up appt last week and they were happy with his progress. We are still having a small amount of siezures but not many compared to what we were having. He has had ear infections and a head cold so this has brought out some siezure activities. But all in all they were happy. I did get a phone call on Friday from the nurse stating that they found some calcium in his urine culture and want us to increase his potassium medication to help with this. He has gained weight weighing in at 29lbs 9 oz. (Daddy wants him at 30lb by the new year, LOL). And is 38 inches tall.

It was a stressful holiday season this year for my family and myself. December 7th we lost a great man in our family. My grandfather passed away. It was a hard loss for me to go through but we all no that he is watching over Noah and family now. He will be greatly missed.

Im hoping that 2011 brings much more improvement for Noah. I really am super excited to see him progress already and hope that his improvements will lead to progress with sitting and head control. I can only hope. While I hope I will enjoy all the smiles and babbling that he is doing and be proud of everything he is accomplishing. I will also be thankful for all my friends and family who show their continued support. We love you all!

A New Post!!!!!

So where do I start so much has been happening....some GREAT news and some not so good. We will start with the GREAT news....

GREAT NEWS~~~~~

Since going on the ketogenic diet in Boston Noah has been doing AWESOME! We went from having 3-8 siezures daily, and now since the beginning of this diet Noah has only had 10-12 siezures...that is 10-12 siezures in about 3 weeks!!!! So exciting. When we went to his 2 week follow-up the doctors were so excited. Not only has it helped with his siezure control but he is gaining wieght and has hit his growth curve (3%) again and is thriving. He is now 29 lbs 3 oz as of Tuesday.

He does have ear infections in BOTH ears right now that he is being treated for. But he is so much more alert and vocal on this diet too. The physical therapist have noticed a difference in his strength and alertness and everyone is super excited and hoping that this means improvement is soon to be seen. I can only hope!

We finally have our IEP for preschool scheduled after I yet again put my foot down and called and told CDS how I felt about their services. Once I called they decided it was time to get an appt scheduled. We are meeting on Dec. 2nd at the Morrison Developmental Center and getting this IEP done. This means my little boy will be attending preschool soon. So many mixed emotions. Im so excited for the opportunity that this is going to provide for him but anxious and nervous letting him out into a world that has so many germs and etc. Im emotional that I must let go a little bit and that he is growing up so fast... (as tears blur my vision). But it will bring him joy and so much opportunity to grow.

This week is a busy week. December 1st we go and get his feet braces for him to wear to help with the involuntary spasms of his legs and feet due to not using them. He will wear them most of the days to help keep his feet and ankles at a 90 degree position.

BAD NEWS~~~
This last week into this week is a tough week for our family. My grandfather is in the hospital in CCU. He had emergency surgery last week and they removed his colan and he is "gravely ill" as doctors have said. Right now he is sedated and on a respirator in hopes that he will gain strength but things are not looking great. MANY MANY prayers are needed. It breaks my heart to see him this way. Grampa lived with us the first year of Noahs life and we became extremely close. Noah is infact Grampa's Little buddy. I just beg people to pray!

The first Few Days on Diet

We got to Boston Childrens Hospital on tuesday.... by the time we got his blood work done downstairs he was admitted to 9 Northwest at around 2:30 that afternoon. He was started on the new formula *KetoCal* half strength at around 5:30pm. All was going well. Wednesday morning he was smiling and sleepy but was told this was to be expected. This was ok. We took him for a walk around the floor and he was smiling and having a good time. Then things took a turn for the worse. He started retching, after retching, after retching...by the third time the doctors came in and said this was sometimes a normal reaction of the diet. The transition to this diet was not always pleasant but he was ok. They had them put an IV in his foot (which Boston isnt to impressed with his viens either) gave him some IV fluids and after an hr or so started him back on the diet with IV fluids hooked up until about 730pm. They had been worried he was getting to acidosis but blood work did not show this to be true. Hooked up to his feeding pump he did well all night. Stat's stayed up in the high 90's and no retching. Blood work done this morning was also great and things were going smoothly again. He was sleepy but holding his fluids and happy until.... 12:30pm. He then started retching violently once and then again 15 minutes later. His oxegyen started dropping again. Gave him a break from feeding and gave him some blow-by oxegyen.
We have hooked him up again to his feed and crossing our fingers will progress....

The doctors are all okay and confident with how things are going. We get reassured that this is a normal occurance and although hard to watch and put him through will result with some benefits in the near future. We are changing Noahs whole metabolism and this is tough and he may just feel "icky" for a few days.... It will be so worth it if it helps to give him better siezure control in the future..