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..

A New Adventure! A New Journey!

WEll.... things have been slowly working for us. Noah has been given the opportunity to go to Boston and try the Ketogenic Diet. WE are crossing our fingers and holding our breaths. This is a HUGE change for us. Not only does it change his diet (formula) but we have to be VERY careful on which products we use on him. From body lotions and shampoo too chap sticks and toothpaste. It is a HUGE change but it will be so worth it if we can at least slow the siezures down.
Siezure activity has been high lately. Not only because he has been sick but even before this. Most of them have been the smaller siezures but just this morning he had a siezure and decided to stop breathing on the nurse.... hoping no more of those show up. We leave for Boston on November 2nd and are at Children's Hospital until November 6th. I really pray that this works for him. IT would be so great to see the siezures slow or stop and to see what he can accomplish without them.

This last weekend Noah was hospitalized at MMC. Another cold that he couldnt handle. He couldnt breathe through all the congestion. His oxegyen stats were dropping. We brought him to the ER on Friday morning. Immediately he was rushed to critical and we were admitted until Sunday afternoon. We came home still on oxegyen with him still not keeping his stats up without the extra help. Last night the nurse was able to take him off oxegyen around 11pm and he has been at 96% oxegyen all day. YAY! He is smiling and seems to be feeling better too. It was making me nervous that we might have to reschedule Boston but Im feeling better now!

I got a call yesterday that a spot has opened early at Morrison Developmental Center for Noah. We were told there was a year wait and Noah was on the top of the list. A opening has became available sooner. So my little boy will be going to preschool soon. We are beginning the process and hopefully by the end of November he can start. This brings a mix of emotions to me but I know it is an awesome opportunity for him. And I look foward to seeing what it brings to him.

I will keep everyone updated on the future progression of the new diet and school. These next few months will bring many changes. I hope and pray that it will bring good news to come and a healthy upcoming 2011.

P.S.

One more thing......

We have decided to put Noah into that Preschool program it was a SUPER hard decision. But we took a tour (Erik, Myself, Noah, Grammy, Grampa, and Noahs PT Lana) it was a great experience and it would be such a great opportunity for Noah. We spoke to Noahs pediatrician about it and she was on board and thought it was a great opportunity as well. Their are risks to him going out into a environment like that but sometimes we just have to weigh the pros and cons. And we feel that this opportunity is to good to pass on for Noah. So we were hoping for this fall but the class is booked. But next Sept Noah will be a Student at Morrison Developmental Center hopefully. My little boy is growing so fast....
Ive been working again on his scrapbook (although Im three years behind) and I just remember and wonder where the time has gone....

Waiting, Waiting, Waiting some more

So 8/23/10 we did go to Boston and they did blood work ( poked him once with the needle with success...woohoo) and they said as long as the blood work came back ok Noah would be a great canidate for this Ketogenic Diet... After we heard the results we would come to Boston Childrens Hospital for four days and be admitted and start the diet. So we have been waiting for the results. While waiting I have been keeping track of Noahs siezures---- Noah has had 96 small siezures in the past 28 days! 96!! I have called Boston twice to find out the progress of this diet situation and always get told the same thing " they will call when they get the results!" Frustrating! I just want to begin this diet so that hopefully it will reduce the amount of siezures my baby boy is having. In the past few months since the increase in siezures I have watched Noah decline physically. He doesnt hold his head as well anymore, etc. Its so discouraging. But I really hope he gets accepted for this diet and Ive read such good things about it. I really hope this is the answer we have been waiting for.
AS for Noah's health besides the siezures we have had a struggling start to fall and weather. WE have been hospitalized once for a viral cold that Noah was having trouble fighting. It took him two weeks and he was just starting to sound better and look more like himself and now well, Mommy has broncitis and now Noah is running temps and getting congested again. He went to the doctor today and she expressed that because he is already been so sick and winter isnt even here yet we might be in for a rough winter.... I hope we can prove that wrong.

On a happy note I finished my degree in July and recieved my Associates Degree in Early Childhood Education. I recieved a job opportunity with DeerPond Educare at the end of August and took it. Ive been working PT as a Jr. Preschool Teacher in the facilty and love it. Its such a great atmosphere to work in and working with children everyday is great too. Im very happy with my career choice.

My love life is still going strong. Erik is so good to me. And I just love having a family to come home too every day. The girls mean so much to me and Erik does too. IT has really made my life happier being with them. They are all so good to Noah and its so nice for Noah to have a daddy figure in his life. For a while I never thought he would have that and I cherish Erik in his life everyday. Just as I cherish Erik in my life everyday too. Erik and I have been struggling with life financially lately-- but in this economy isnt everyone. But my point is sometimes that can ruin a relationship and although it has brought about our fights I think in the long run it is and will make our relationship stronger.

Keep praying everyone. Pray that Noah is a good canidate for this diet and pray that the diet at least slows the siezures if not erases them from him life all together. Wouldnt that just be wonderful.... thats what I dream about.....and hopefully one day it will come true!

The Start of a New Adventure

Well Monday we went to Boston Children's Hospital for an appt to talk about the Ketogenic Diet that might help Noah's siezures. They are very thorough there. We first met with the Nurse who did the routine wieght & height and a urine sample.. Then we met with the doctor who went over the diet and its pros & cons. Then we met with the nutritionist to talk about the diet itself and what foods he will be allowed and formula etc. Then the social worker came in and made sure everything finacially and support wise was ok. Then we had to go to the lab for blood work & to drop off his urine from earlier. This is where I hold my breath.... The get his blood first try. But the urine from earlier is no good so they need a new one. We wait for 3 1/2 hrs for him to go. It didnt happen and they say it will get done when he comes back!
But they are going to do up his blood work and check his metebolic levels and make sure that his body can handle the diet. If everything comes back and they give him the green light we go back to Children's hospital in the end of Sept to be admitted for four days to begin this diet. The diet sounds great and sounds like it is worth trying. Hopefully it will stop his siezures all together but sometime it just slows them down. I'll take anything at this point. He is siezuring everyday. Yesterday he had 8-10 seizures that I/or the nurse witnessed.

The decision about preschool has been made and are in the works. I have decided with the help of family that we are going to try the preschool thing with Noah. It is going to be a great opportunity cognitively and physically. The big set back to making this decision was the health fact that he could catch something that his body wouldnt be able to fight off but the pro's to this situation are to good to pass up. We have decided that he could catch these viruses just goin to the doctors or out in public and if he goes to preschool and keeps catching illnesses we will pull him out but we have to give him the opportunity. There is a waiting list that we have been put on but as soon as that is over my little boy will be going to school.

We have also set up to get his ears looked at for a second opinion. We are begining the struggle of ear infections again and I want someone to reevaluate for Tubes. We are in there every month it seems with an ear infection and down to one antibiotic that seems to work.

I was offered a Part Time position last week at the Daycare that I did my externship with. I will be the afternoon head teacher of the 3 year old room. I am super excited about this, and will start on this friday. Its a 2-6 position so I will still have my mornings with Noah. I hope that in the future it can become more that PT. But its a great opportunity, and I really enjoyed it there when I was externing.

I also got great news from the diabetes dr last week that my A1C is still at a 6.8 and she is super happy with this. This is wonderful news.

Update on Life

So as usually things can change quickly in the life of Noah. We are struggling again with siezures. He is having them quite frequent. They are the little ones... the tremors and staring spells but he is doing it very frequently throughout the day. Two weeks ago I requested an EEG on him and the doctor says the frequency has increased greatly since January and he is requesting that we be seen at Boston's Children's Hospital for a possible trial of Ketegenic Diet. Which is a high fat low carb diet for children with siezures that helps the body fight the siezures. So August 23rd we go for our first appt in Boston. This is a 3 hr evaluation and consult. A month later we will go into Boston Childrens Hospital to be put on this diet. We will stay for 4 days admitted into the hospital. Then when released we need to go back two weeks later for follow up, one month later after that follow up, and then every three months after that. Lets hope this works. If it works there might be a possibility that we can take him off from some of his meds. That will be a relief.

Brought him to the doctors yesterday with a temp, retching, and etc. We found a right ear infection again!!! It seems like every month we go through this. I have decided to get a second opinion on Tubes and this appt is being set up.

There has been a huge decision brewing on the Noah front.... We have been researching putting Noah in a specialized preschool. ITs called the Morrison Developmental Center in Scarborough Maine. This is a low functioning preschool setting. We took a tour of the facility last friday. The center has a few kids in it that reminded me of Noah. And when talking to the Head Teacher there about Noah and his special needs I said " He has siezures that makes him stop breathing..." She spoke up and said " your gonna have to try harder to scare me" and one huge wieght was lifted off my shoulders about this situation. There is a nurse in the room most days and if I can get approved I can have a special nurse transport to school with Noah and stay during the day with him too. ITs a HUGE decision that I am struggling with. It is an ABSOLUTE amazing option for him. Learning wise I think it would be fabulous. He would get therapy there everyday most of the 3 hrs he is there... the only struggle is bringing him into the public and making it possible for him to catch some sort of virus that he will not be able to fight off. Can I take that chance? I dont know that answer yet. I need to really think that through because I dont want to regret it later if something were to happen to him. But he seemed to really like it there when we were touring it. He was smiling and very alert to all the new sounds around him. And that tells me I should just do it. ITs just hard to let go. But knowing that he will be enjoying himself and learning really helps to know.

I finished my schooling. I officially hold an Associates Degree in Early Childhood Eduacation. I have a job interview on August 25th for a Assistant Toddler Teacher in Portland that Im crossing my fingers for. We will see. Very exciting.