chiappettas

2012-01-25T10:54:00.002-05:00

Hey There Everyone. I know it's been a really really long time since I've had mommy sit down and write about what's going on like we used to. I am really hoping that I can get back into it so that those of you far away can also know what's been happening and what goes on. It was really fun when mommy and daddy and me could sit down and write about the day or week and all but it hasn't been the same. I guess it's time to get back into it though and I'll have fun with mommy writing about my day or week. So my vagus nerve stimulator has been turned on and is doing pretty well. It is still set pretty low right now but we have to work our way up slowly. This requires us going to the neurologist every 2 weeks to get it adjusted. There are different frequencies as well as different settings for how often it goes off. Right now it is set to go off every 90 minutes automatically and we just went on Monday and he changed the frequency again. I know it sounds complicated huh? It will just take a while to get to the point where it goes off every 3 minutes. Mommy also has a magnet though and if I'm having a seizure she can swipe the magnet over the chip in my chest and it right then sends a signal to my brain for 30 seconds and most of the time it brings me out of my seizure quicker and it's less intense. Hopefully when we get to the 3 minute mark we won't have to use the magnet as much. All in all that whole process is going fairly well. I am still having lots of seizures but that's ok because that also makes me who I am. The device is also set low at this point as I mentioned so it will take time. It doesn't help though either that I'm teething and that's no fun. I wish they would just come in already. After much fighting with me and all mommy was also able to get my AFO's (my little braces) back on my feet. Mommy has not been able to get them on me for a really long time because I think all the extra seizures and me not having occupational therapy or physical therapy I have gotten really stiff. So mommy has been doing what she can and It's getting a little better but she was determined to get them on me and that she did. I gave her mean faces while she was trying to put them on because I didn't like it but I know I will get used to them again and hopefully my feet will start to stretch back out again. Well, that's all for now. I will catch up some more later. I gotta let mommy go get a few household things done...well, maybe I will we'll have to see what kind of devilish mood I'm in. :-)

2012-01-24T17:48:00.000-05:00

2012-01-20T16:11:00.001-05:00

2012-01-13T17:07:00.001-05:00

2012-01-05T17:17:00.001-05:00

Stylin in my new chair!

2011-12-30T15:06:00.001-05:00

2011-12-29T21:50:00.001-05:00

Today I got my vagus nerve stimulator turned on today and it went pretty well. My neurologist said I handled it well in turning it on. Right now it goes off every 90 minutes. I have to go back in 2 weeks so he can set it to go off more frequently. The goal is to get to have it going off every 3 minutes. It takes time though just like medicine. My body has to get adjusted but it has to be done slowly. So it will take some time.

Bandages off

2011-12-20T19:32:00.000-05:00

One baby step at a time! Mommy and Hospice were told we could take bandages off today so they did this afternoon. Looks nice huh? Hopefully it will all heal soon and like it is supposed to. It is very very sore!

My lovely battle scars!

2011-12-17T15:58:00.001-05:00

Getting ready for surgery

2011-12-16T07:45:00.001-05:00

2011-12-14T11:37:00.001-05:00

2011-12-14T11:30:00.001-05:00

2011-12-14T11:22:00.001-05:00

Noise maker

2011-12-02T17:57:00.001-05:00

Looking at lights and thinking something is funny

2011-12-01T16:41:00.000-05:00

Surgery

2011-11-15T10:54:00.003-05:00

Well the time has finally arrived so here is the information for all who are asking. I go to Morgantown on Dec. 6 for pre-admission testing and then back to Morgantown on Dec. 16 for the actual surgery. This is the surgery for what's called a vagus nerve stimulator. Since my last two seizure medicines were not working for me something had to be done to help me control most of my seizures. This is a procedure to implant a device that will send impulses to my brain every so often in order to help control my seizures. It's a learning experience for all involved.

Mr. Airforce

2011-11-08T14:31:00.000-05:00

2011-11-08T14:27:00.000-05:00

2011-11-08T14:17:00.001-05:00

2011-11-08T14:05:00.001-05:00

2011-11-08T13:57:00.000-05:00

Being Silly

2011-11-08T13:50:00.001-05:00

2011-11-08T13:43:00.001-05:00

2011-10-25T08:10:00.001-04:00

2011-10-21T10:45:00.001-04:00

2011-10-21T10:25:00.000-04:00

Mr. Cool

2011-10-12T13:36:00.001-04:00

Playing in my seat

2011-10-07T13:33:00.000-04:00

2011-10-04T16:40:00.001-04:00

2011-10-04T16:39:00.000-04:00

2011-09-25T09:44:00.001-04:00

2011-09-24T17:17:00.001-04:00

2011-09-22T08:59:00.000-04:00

2011-09-20T12:45:00.001-04:00

2011-09-15T21:36:00.001-04:00

2011-09-15T21:31:00.001-04:00

2011-09-15T21:27:00.001-04:00

2011-09-13T13:52:00.001-04:00

2011-09-13T13:45:00.000-04:00

2011-09-07T14:21:00.001-04:00

2011-08-08T19:44:00.001-04:00

2011-08-08T19:43:00.001-04:00

Vagus Nerve Stimulation

2011-07-28T17:07:00.002-04:00

Hi there everyone. Just giving a little update as to what has happened and what will be happening. I turned a big 4 years old on Wednesday! Quite an accomplishment to say the least! On Wednesday I had an appointment with my neurologist to talk about a new form of therapy for my seizures. I am not doing well on the medicines and have basically "failed" two or more seizure medicines they have tried. So since that has happened we still need to find a way of controlling my seizures. This new form is called Vagus Nerve Stimulation. It is a little pacemaker type gadget that will be inserted in under my left chest and then an incision in my neck so that the wires can be threaded through and wrap around the vagus nerve in my neck. It then will basically send little electrical signals to my brain through way of the vagus nerve and stimulate that nerve in order then to help control more of my seizures since again the meds are not working. If we don't go this route then there are just a few other meds we can try but they have more harmful side effects as well as we are now very limited to just a few because of how it has to be given through my feeding tube. This new VNS therapy will require surgery and that is kind of scary. There is just a lot to think about and think of where we go from here. Within a week though we should meet with a neurosurgeon and he will explain surgery in more detail and if he even feels comfortable with doing such a surgery on me. After that meeting if it's a go and that's what we lean toward then surgery will be scheduled shortly after that. God is good and He holds tomorrow in His hands. As a wise person just said to mommy today that this is where faith has to trust that God will ALWAYS ultimately be in control! So we have to step out in faith and see where God leads.

Birthday Boy is 4 Years Old!

2011-07-28T16:57:00.001-04:00

Mr cuteness

2011-07-16T12:04:00.001-04:00

2011-07-07T14:59:00.001-04:00

2011-07-07T14:49:00.000-04:00

2011-07-07T14:40:00.000-04:00

2011-07-07T14:36:00.000-04:00

2011-06-28T09:17:00.000-04:00

Up To No Good?

2011-06-20T09:01:00.001-04:00

2011-06-20T08:57:00.001-04:00

2011-06-07T17:34:00.001-04:00

1st time in pool

2011-06-07T16:49:00.003-04:00

This was not really a raft but a small floating solar type cover but mommy was just trying stuff out but I seem to like it very much.

2011-06-07T16:45:00.001-04:00

2011-05-28T12:53:00.003-04:00

Hey There everybody. It has been a while I know. Things have just been crazy around here what can I say. Story of my life though. To make a long story short my neurologist is starting me on a new medicine and taking me off one of the other ones. It is about a 3 to 4 month long process and we are only at week 3! Got a ways to go. This week has been really awful due to the fact that this is the 3rd urinary tract infection that I have had in about 2 months and the antibiotic that I am on for this one has an effect on my seizure medicines. The antibiotic decreases the potency of my seizure meds and this is right when I'm starting my new seizure medicine. So we have to ride out the rest of the weekend and hopefully since Monday is my last day of the antibiotic we will start to see improvement with my seizures and hopefully I can get back to sleeping. If not then I guess we need to re-evaluate my seizures. About the only 2 things keeping me pretty satisfied and not too fussy is me being in my swing and mommy playing my message from Grandpa Ayers. Hopefully things will get better soon.

Swinging away

2011-05-28T12:49:00.000-04:00

2011-05-28T12:34:00.002-04:00

I was so hot the other day mommy had to put me on the floor with fan blowing on me with a cooling type mat mommy found that you get it wet and wring it out and it draws the heat away from your body.

After a while of fussing on the floor being hot mommy played my own special message from my Grandpa Ayers and it really helped to take my mind off being hot and I like hearing Grandpa's voice.

And now I'm mad again because she took the phone away. I wanna hear it again mom!

Shoes and Boots

2011-04-06T11:55:00.001-04:00

Enjoying The Outdoors

2011-04-06T11:08:00.001-04:00

Trying to sit up

2011-04-06T10:56:00.002-04:00

Look at me! I am actually sitting up by myself for a few seconds with the help of my boppy. I have been starting this new thing where I like to try and pull myself up. I pulled myself into this position all on my own from being layed back on the boppy pillow. Mommy caught me like this when she came out from starting laundry. Can't leave me alone too long. :-) I still have a long long way to go but it's a start and I just keep on trying to sit myself up. Mommy had me just on the pillow the other day and I was still trying to sit myself up. I can at least get my shoulders off the pillow when I'm laying down like that. Also the funny thing was too I thought mommy was going to have a cow for a second because I was on my side and all of a sudden from the side position I picked up my whole head and held it there for a bit. She told me that's how I learn to roll over by getting my head up like that but we will see what happens. How do you like that miss former OT? :-)

Crazy Legs

2011-04-05T16:48:00.002-04:00

Sometimes mommy finds me in the crazy positions where I like to bend or cross my legs. That is actually very good for me that I can do that on my own. And since I'm just so cute it's always worth a picture. :-)

My Cuteness

2011-04-05T16:38:00.000-04:00

More Mohawk

2011-04-05T16:29:00.001-04:00

Mowhawk 2

2011-02-08T16:13:00.002-05:00

I wanted to celebrate and honor daddy's birthday by having mommy give me another mohawk. I am just one cool dude now! Daddy would absolutely love it.

2011-02-03T16:32:00.002-05:00

Hey Everyone. I know that it has been a really really long time since I have actually written on here so I thought I would sit down with mommy and update you all a little bit. I am still doing pretty good. The main thing that I have been dealing with is getting a sinus infection and I have been having quite a few more seizures in the past couple of months. After some bloodwork and phone calls and the helpful hospice Dr. and nurses we have been allowed to increase my topomax a little bit. If after a little bit that doesn't seem to help then we can increase it a little bit more and then if that is still not working then another seizure medicine will have to be added. Mommy and I are praying that this little increase in topamax will help. I have been on the 1st new dose for about a week now and it seems to be doing ok. I'm sure it's fun for mommy though because one day I may sleep all day and the next I might be awake all day or else awake and asleep. Not like she can plan her day ahead of time with me anyways 'cause you never know what to expect but then to throw in the whole maybe I'll sleep one day and be awake the next and give her a hard time I'm sure can be pretty tough sometimes. But she handles it very well and is just learning to go with it. :-) I do love my mommy that's for sure! Well again that is what has been happening recently and so hopefully I can get back to doing this a little more often.

Bundle of Cuteness

2011-02-03T16:23:00.000-05:00

2011-01-12T12:17:00.002-05:00

This is my new swing! It goes from side to side or mommy can turn it around and it will swing back and forth. I really like it. This swing came from one of daddy's friends up in CT. I am so thankful that daddy had some really good friends it seems. I don't even know most of them but I'm glad they still think of me and mommy. Daddy would be glad to know that his friends really are true friends. So I am thankful today for this new swing. It really helps calm me down and sometimes I do like the side to side and sometimes back and forth. Now mommy has options instead of having to hold me all the time. It really helps too when I am having some rough seizure episodes. So again I say thank you to daddy's friends. Daddy would be proud.

A First

2011-01-05T13:25:00.002-05:00

For the very fist time i actually held onto something other than a finger. In vision therapy this week i was able to hold this pinwheel as well as look at it!

Absolute Cuteness

2011-01-05T13:16:00.000-05:00

Huge Peppermint Fun

2011-01-05T13:10:00.000-05:00

Little Santa

2011-01-05T13:01:00.000-05:00

Fun Christmas Pics

2010-12-22T14:02:00.001-05:00

Hanging Out

2010-12-22T13:51:00.001-05:00

Hide N Seek

2010-11-28T16:07:00.002-05:00

Mommy found me like this so of course she had to snap a picture. I snuggled myself in like this so you could only see my face.

Tuckered Out

2010-11-28T16:02:00.001-05:00

Tuckered out from Thanksgiving at Grandma's

Expressions

2010-11-28T15:48:00.000-05:00

These are just some of my cute adorable little expressions.

Fall 2010

2010-11-15T12:37:00.001-05:00

New Hat

2010-11-02T16:37:00.001-04:00

I'm just sittin' in my seat sporting my new hat that mommy got to cover my ears.

Cute Pumpkin

2010-11-02T16:22:00.002-04:00

I like Fall. It makes for some nice pictures. This year mommy got me a pumpkin jacket and took these cute pics. Aren't I just so cute? She even got me my own little pumpkin.

Just Randomness

2010-10-13T16:02:00.000-04:00

Ready For My First Cowboys Game of 2010 season

2010-08-08T19:51:00.002-04:00

I gotta big hat to fill this year!!

I guess I will have to take over daddy's cheering section for the Cowboys this year. I however will not yell at the TV if they lose or do bad. Instead, I will give them a mean mean look and shake my fist at the TV. LET'S GO COWBOYS!!!

3 Years Old!

2010-07-31T21:04:00.001-04:00

You better not steal my cupcake Hippo!

Gotta pray for my cupcake.

Birthday Boy

2010-07-31T20:55:00.001-04:00

My "birthday cake" from mommy was this little smiley cake made out of flowers. Isn't it cute?

Cute outfits

2010-07-31T20:49:00.000-04:00

Random Cuteness

2010-07-31T20:41:00.000-04:00

My Stander

2010-07-31T20:35:00.001-04:00

My New "Seat 2 Go" Piece of Equipment

2010-07-07T16:55:00.000-04:00

July 4, 2010

2010-07-05T14:51:00.001-04:00

Swimming in the Pool

2010-07-05T14:37:00.001-04:00

Chillin on the couch

2010-07-05T14:31:00.000-04:00

Jumpin in my Jumparoo

2010-06-04T12:19:00.003-04:00

If there is no picture just go ahead and press the play button and it should play. If it doesn't work mommy will try something else. Enjoy.

My AFO's and Clown shoes!

2010-06-04T12:06:00.000-04:00

My little red wagon.

2010-06-04T11:47:00.001-04:00

Enjoying Time Outside.

2010-06-04T11:42:00.000-04:00

2010-05-26T16:02:00.001-04:00

Yeah...I'm cute and precious.

Hi. I'm FARMER DAVE!

2010-05-26T15:48:00.002-04:00

I don't wanna and you can't make me!

I like to prop my feet up on the wipes box...kind of comfy.

Just another cute position mommy found me very comfy in.

Mother's Day 2010

2010-05-14T10:05:00.002-04:00

This is what I gave mommy for Mother's Day with the help of grandma.

2010-05-14T09:58:00.002-04:00

Just a cutie pie

This is what mommy has to do when I get cold.

Easter Outfit

2010-04-04T21:15:00.000-04:00