Such a big boy!

Trying to tell mom it's time to eat by grabbing my tube!

August14,2008

Hey Hey Hey Everybody. Guess what? I just taught mommy and daddy a very important lesson today! WHEN IT'S HOT NEVER LEAVE HOME WITHOUT MY COOLING VEST!! Here's how it went down. We got home from church today and mommy and daddy decided that they needed to go run a few errands and so they decided to take me with them. Not a bad idea because I like going places with mommy and daddy. Well, mommy changed my clothes from church and put a cut off onsie on me and noticed I was starting to get very hot because it was so humid outside and hot in the house too. I was starting to get fussy like I do when I get hot and having some more seizures but mommy and daddy thought that the air conditioner in the van and in the store would help cool me off. Well, I got news for them...It didn't. :-) When we were in the store I started getting fussier and louder with my squealing and I was just not happy. So, mommy and daddy quickly finished up what they needed to do and then they had to stop at Food Lion and daddy had to run in quickly and get me a bag of frozen corn. Yeah, you heard me...frozen corn. He put that on me and that helped a little bit until we got home and then it was in the bathtub and then on the bed in mommy and daddy's room where they were trying to cool the room off with their little air conditioner and the fan and that still wasn't the greatest so grandma called and guess what...mommy had to take me over to grandma's since it was very cool in her house and it still took me a little bit but with some Tylenol and laying on the nice cool floor at grandma's I soon cooled off and mommy and daddy came back and got me around 6:00pm this evening. See, I told you that once I get hot that's it...it usually takes a while to get my temperature down depending on how hot I was in the first place. That's why mommy and daddy try their hardest not to let me get so hot. Oh well...I bet next time they take the cooling vest when it's hot out. :-) Well, it's medicine time and daddy's getting that ready so I will go so he can give me my medicines. Talk to everyone later.

My new walker

Just wanted to say thank you to nana and papa for my new walker. I just got it today and I think I'm going to like it very much. It will be good for me. As you can see I was having so much fun it put me to sleep. :-)

Giving mommy a hard time

The first picture is the nice picture of me sitting up in my seat like a good little boy while I was eating. It helps me when I sit up and am eating. The other pictures are the pictures of me squirming my way all around in my car seat not wanting to sit up and be in there. :-) Mommy had to sit me back up every couple of seconds and then finally she gave in a just let me be and let me tell you I was quite content.

Sept. 8, 2008

Hi There everyone. Mommy is up with me tonight so we figured we would write. I think I have caught up on my sleep and now I'm in my pattern of not sleeping much again. Go figure. I only slept a few hours today. I was up at 1:30AM yesterday morning and took about an hour nap around 8:30am this morning and had a short 3 hour nap from about 7:00pm to 10:00pm tonight and since then I've been going strong so mommy is trying to stay awake and so I suggested we get on the blog and write something. Grandma took me and mommy a ride in the golf cart this evening and boy was that ever fun. I really really like riding in grandma's golf cart and it really does calm me down and I just have so much fun laughing and smiling. Believe it or not after our golf cart ride is when we came back inside and it didn't take me very long before I was asleep. Maybe we'll have to start taking golf cart rides at like 2:00 and 3:00 in the morning and maybe that will help put me to sleep. :-) Well, I'm getting a little restless now so mommy needs to put me back down on the floor on my little bed so I will let her do that and I will talk to you all at some other point in time. Just to let everyone know I have an appointment at Johns Hopkins coming up on Sept. 18th with my ENT doctor to check my trache again and make sure it's still the right size that I need and everything. Not a major appointment but nonetheless it means driving to Baltimore. We will let everyone know too when the next appointment is with the reconstructionist for my nose. Mommy still has to call them this month in order to set up an appointment for next April. I'm sure that will be here before we know it. (mom, please put me down so I can play and you can suck me out)! Sorry everyone but I really do gotta go. Catch you all later.

What am I doing?

Yesterday I was in my seat and fell asleep and next thing mommy knew she looked over and this is how I was sitting. I slept like this for a little while and then managed to sit myself back then. Mommy thought for sure I was going to fall out. I have been doing pretty good and have slept pretty decent for mommy and daddy this weekend but still not the greatest. Mommy and daddy do a lot of shift sleeping on the weekends and this weekend we even gave grandma a break and she didn't watch me on Saturday night because mommy and daddy wanted grandma to be able to go to church if she wanted to. I got to go to church this morning with mommy and daddy and grandma. It's been a while since I've been to church and yet mommy still had to stay out in the foyer with me but sometimes that's to be expected. I was kind of juicy today and needed to be suctioned out a few times during service so mommy just decided to stay out in the foyer with me as well as I was really gassy. Well, I just wanted to check in with everyone and say hello and let you know what's been going on. We still have no nurse (surprise surprise) but they are still working on it. So, what can you do. Well, I gotta go now so I can watch the Cowboys with daddy. I hope they win. I got to see some of the Florida Gators play yesterday and they won! Sorry though to all those WV fans who had to watch their team lose. Talk to everyone later.

Me and my buddy pumpkin

The other day pumpkin buddied up to me on the couch as to try and "protect" me. They were shooting fireworks off across the way and the next thing mommy and daddy knew pumpkin came over to where I was and put herself right up against me. Aren't we cute?!

August 31, 2008

Well, I stayed at grandma's last night and I hate to say it but I was up all night for her too. Sorry about that grandma. At least mommy was able to get a good night sleep. Mommy and daddy got me a new pair of shoes to try and I think I look pretty darn studly in them what do you think? If anyone is interested as I know some of you are I wear an infant size 1 in shoes. Also, if anyone knows of someone or has one or wants to get one mommy is looking for a walker for me. It doesn't have to be anything fancy or anything like that. Just something I can sit in and learn to sit up straighter and maybe learn to walk and move a bit. Tomorrow for Labor Day we are having a good 'ole party over at grandma's. My Aunt Roofies birthday was last week so we are having her birthday dinner as part of our Labor Day festivities. It should be lots of fun. Since daddy has that day off too I get to see him all day and spend some time with him too. I just can't wait until regular season of football starts and I can watch some football with dad watching the Florida Gators play college football and the Dallas Cowboys play the NFL. Well, I'll let mommy go but I just wanted to say a few words and let you see my new shoes. Talk to you all later.

Me and My Bear Hangin Out!

August 23, 2008

Hello everyone. I'm doing ok. Mommy had a rough night with me last night to say the least. It hasn't happened to me in a while but I just got really really hot and fussy and that just got the ball rolling. Mommy had to give me a nice cool bath and the cooling vest came out and mommy had to give me Tylenol. I gave her a hard time for a little bit. But, daddy got up about 3:30 this morning to help mommy out and helped calm me down. Daddy has his own little tricks to get me to calm down and for some reason he got me to calm down better than mommy did. Sorry mom, I really just missed daddy and wanted to spend some time with him so I figured I would throw a fit so that he would pay attention to me. :-) I am doing better today though and I'm going to be staying over at grandma's house tonight so mommy and daddy can get a little bit of sleep. Daddy actually "went out with the guys" and so mommy has some time all to herself. I bet she goes to sleep! :-) I do like to give mommy and daddy a hard time sometimes but that just keeps them on their toes. We are still working on the nursing situation and hopefully it will get resolved very soon. Pray specifically that people would do what they need to do and that things would fall into place and that we would have a nurse maybe Thursday at the latest. If you could pray to that end that would be great because this has gone on long enough. Well, I will let mommy go so she can go to sleep so talk to you all later.

August 18, 2008

Good evening there everyone. You could pray for me that I start feeling better and that I start sleeping some at night for mommy. I haven't slept very much again the past 2 days so I know mommy and daddy are tired. I actually slept though from about 2:00pm this afternoon until about 5:30pm so mommy go a little nap in until about 4:00pm so that she could feed me. I'm just one little firecracker sometimes. :-) I have a funny story to tell you though. Tonight when mommy and daddy were giving me my bath I was a bad boy. I always like to pass my gas in the tub 'cause I like to make bubbles but I got this excited look and mood on my face which I tend to do before I make a bowel movement and mommy said to daddy, "I think he's getting ready to poop." Well, I calmed down and so mommy though she was in the clear until I made my "poopy" face and yep...out came some little turds floating to the top! :-) It was really quite funny and I'm always trying something new. :-) Well, I just had to share my funny story about pooping in my tub. Have a great and wonderful evening everyone.

August 14, 2008

Well, here's the scoop with nursing. Medicaid has denied me nursing in the home because they say it is not medically necessary that I have nursing. Go figure huh? This is just the most frustrating thing to say the least. There is some kind of appeal that mommy and daddy will have to go through but who knows how long that will take and when we would even have a nurse again. Mommy has been looking online about this special mattress that is supposed to help kids and adults with brain conditions and other things sleep better at night. The mattress though costs about $1500. Kind of pricey huh? All this good equipment for those who are disabled and yet no one can afford it. Go figure. If anyone would like to make a donation so that mommy and daddy could get this for me so that they can start sleeping at night too that would be nice. Just send any donation and mark it "mattress." Some good news though...I had my GI appointment on Tuesday at Johns Hopkins and he seemed to think I was doing well and was proportionate for my size and height. I now weigh 14lbs and am 24 1/4 inches long. I'm growing boy. I had 3 shots today too so pray for mommy and daddy tonight because I am usually very cranky and so pray that I would sleep good tonight and not be too bad for mommy as she is the one who has to stay up with me so daddy can sleep because he has to work. Well, I'm really starting to get fussy and I think I need some momma lovin' so I will talk to everyone later. Goodnight everybody.

August 7, 2008

I know...long time no talk. Things have been crazy around here and we still have no nurse yet. It's some crazy stupid thing where the nursing agency has to get some kind of approval. It's just plain nuts. Mommy and daddy are hanging in there though and they are doing great at taking care of me. Although, I have been giving mommy a hard time the past few nights with not really sleeping but maybe 5 minutes here or there. I gotta be a bad boy some time don't I? :-) I'm never bad. Mommy and daddy came to the conclusion though that I am normal and everyone else are the ones with the issues. :-) I have been getting used to me new feeding schedule so that will probably take a little bit of time and then I'm sure I will sleep better at night. Mommy and daddy though just got me a piece of memory type foam stuff to maybe help me sleep a little better. Who knows. I have been really juicy though too and so that has definitely been keeping mommy and daddy very busy. Well, I'll let mommy go now because it's time for my 8:00pm feeding so I will talk to you all later. Goodnight everyone.

Finally asleep after 2 days of not sleeping!

August 1, 2008

Hey Hey Hey Everyone. Hopefully things will get back into a routine soon but still no nurse for the weekend either. Please pray that the nursing agency will do what they can about getting authorization and get nurse Brenda back in here on Monday. This is just getting absolutely ridiculous now!! This has been a busy week since I turned 1 year old on Sunday and then Nana and Papa stayed until Wednesday and then Pop Pop's family came in today and I get to see my cousins Maria and Jake and Ben and Danny. They will be here the weekend so it will be fun hanging out with them. Mommy and Daddy changed my feeding schedule to to make me feel more like a normal baby and I have more freedom now too. They are feeding me one certain amount every 4 hours and it's been working well so far. Now I don't have to be hooked up to my pump and they are still giving me my formula through my tube but are using a big syringe and giving me more of a bolus type feed. Mommy gives me a little and then burps me and then gives me a little more and then burps me again and then gives me the rest and then burps me again if I need it. I have been doing ok with it so far. I am enjoying my freedom. I am getting about 3.2 oz of formula every 4 hours. That may not seem like a lot but for me and my smaller stomach that is very good for me. Well, now mommy has to stay up until at least Midnight with me so she can feed me again at midnight. Goodnight everyone.