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..