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.