Christmas is coming!!!

This year is exciting because Noah is doing so well. (knock on wood) and because of school I have some great gift ideas for him. He doesnt have to get "just clothes." So exciting.

We had a Boston Trip last week for Noah and he is doing so well. They were all impressed. They did some blood work to make sure everything looked ok after being on the ketogenic diet for over a year now and I got the results on Thursday and everything looks ok. They are increasing the diet calories by 100 per day and increasing his pumping rate to 55mls/ an hr instead of 50mls/hr. He has grown a cm in hieght but didnt gain any weight. "Go figure" that has been a struggle since birth. We are keeping him on the diet because I think it is helping and hoping to decrease his Klonopin until he is no longer on this med and then we will work to taper him off the Zonisamide. I would be so excited to be able to get rid of two meds!!!! AS long as siezures dont get worse of course.

School is going well. He is pretty consistant with attendance this year and seems to be improving. He is doing better with head control it is still not there but he is getting so much stronger! :) Little steps is all I ask for! He is in visual therapy now and seems to be doing well with that. So happy! He is enjoying the christmas lights on the tree this year. :) :)

Well that pretty much sums everything up for now. We love you all!

Happy Thanksgiving!

This is Noahs Handprint & FootPrint turkey that we made at home. We traced his hands and sneakers and then the girls cut and glued it together...so adorable!


Happy Thanksgiving to all our family and friends! We are so thankful for each and everyone of you! And we hope you all have a safe and happy holiday!

Noah is doing well. School is doing such good things for him. He is getting stronger in head control and I really HOPE & PRAY he is holding it up soon. I keep telling him Mommy wants him holding it up by my birthday!! :) But it has been such an amazing experience so far.

We did do some trick or treating this year about 5 houses which is better than our 1 house last year. However we had an iccident with Grampa in which we went for a trip into a ditch and luckily Grampa kept Noah from getting hurt...grampa was a little sore for the rest of the week and neither got hurt to badly but that was enough for mommy to call quits on the whole trick or treating this year!!! We went back to the house and continued to give out candy!

We have all got our flu shots and seem to be doing well this year except for the two spells of pnemonia that Noah has already had. "KNOCK ON WOOD" I really hope this year is better for him we had enough scares last year with him!

Happy Halloween

Noah has not been healthy enough for halloween for the past 2 years....But Noah is excited this year for Halloween. So far so good. (knock on wood) He is doing pretty good and might actually get to do a little trick or treating...depending on how the weather is....I think that Great Grammy & Grampa should fly us to Florida every year so that Noah can trick or treat in warm weather... :)As you can see he is dressing up as "SUPER MAN" Mommy was not all so excited about the fact that he has grown out of all those "cute" cuddly animal costumes but Daddy really liked this...now its time for the super heros!!! He does make such a cute SUPERMAN I have to admit...

He is off to school today all dressed up. They are doing a little celebration party for Halloween... Sent the nurse with the camera so Im sure I'll have more pictures to post later.

Health wise he is doing good. He has been fussy lately and Im not sure if its more related with bathroom issues we have been dealing with lately or those molars...however either way it has not been fun! Noah holds his breath when he gets upset and there has been lots of episodes of this the past couple days.... Mommy prefers he breaths and doesnt turn all those lovely colors!!! Other than that he is recovering from phemonia quite nicely and has been back to school all week...

Well...we hope everyone out there has a safe and fun Halloween! We love you all!
More pics to come.

Noahs Doing Better

Noah is back to school this week. He is off O2 and is doing well.... he still has those darn molars coming in so he has been a little cranky and drooling like a faucet. He is still on antibiotics for his phemonia but has been doing well. He got some new toys for home and a new switch too! Very exciting! Its great to have some toys he can play with at home.

We've had some nursing issues but we are taking care of them. I found my nurse sleeping last week and we fired him. Its a much longer and scarier story than that but I dont want to go into details online! Let's just say this momma & daddy was not happy.

However this makes our nursing company back in a recruiting state. We will see how long this takes. But since we have two agencies working to find coverage hopefully it wont be long.

Home Sweet Home

Noah came home on Monday from MMC. He is doing alright. He is still on O2 but just 1 liter. He isnt running a temp anymore and he is happy most of the day.

Tuesday he got his flu shot when we went to his follow-up appt so hopefully this will help him from getting sick again soon. The Dr was happy with the way he looked and sounded so hopefully we get off this O2 soon.

If everything goes well he should return to school tomorrow!

Back Again :(

Noah was brought to SMMC yesterday with a fever of 105.7. Bringing him to the dr's I thought it was just going to be an ear infection. He was on a little O2 but didnt sound really congested and was just burning up. At SMMC we got the fever down and they did blood work, urine test, and a chest xray. The xray showed signs of a phemonia again. We were transported to MMC and stayed overnight.
This morning Noah is doing better. His temp is gone and he requires a little O2 periodically. The doctors just took him off O2 for a while now. We are hoping to go home tonight. I am very confident that I can handle the illness this time. He's alert and doesnt sound very congested at all. The doctors at SMMC wanted him to come for observation because we were here 3 weeks before with phemonia and they felt it could be a hospital aquired phemonia but MMC doesnt feel this is the case with the improvement they are seeing so quickly and the fact that he did get better in between cases.
Hopefully we will be home before dinner!

Still Going Strong

Noah is still doing ok at home. We are done the antibiotics and off the oxegyen for the most part!!! Still needs O2 sometimes while he is sleeping! But not all the time!! Still is running a low grade temp but doctor isnt concerned as long as it doesnt get higher. Says with phemonias sometimes it takes a while for the temp to disappear completely.

Nursing is going ok. I think the new nurse is going to work out great!

Noah is doing well at school the past two days back he has stayed awake for the whole class!!! The first day he had a busy day because they did OT, PT, and speech all in the same day!!! He was a tired boy when he got home!!!