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.

Me and My Cars Cake

My Cars Cake

Mommy letting me such on a tomato

Cars Theme for my 1st birthday!

July 25, 2008

Boy today was kind of a busy day. There were lots of visitors at our house today because of my birthday being on Sunday some people just popped in today since they won't be around on Sunday. Nana and Papa and Aunt Michele were over today too. It was great fun. Papa mowed all the grass and Nana even was on the mower too. I think Aunt Michele got a picture of that action. :-) I slept a good bit of the day but I think that's because I got a little bit cool and so mommy then had to dress me in some long sleeves and pants. It sure wasn't long after that though that I was warmed up. I think the bath mommy and daddy gave me helped me out too. We went over to grandma's house for dinner this evening and had some of Aunt Michele's meatloaf and potatoes and green beans. Papa also made a tomato salad with tomatoes and onions and oil and vinegar. Let me tell you what too boy, I had a taste of the dressing on the salad and I really loved it. I didn't even make a funny face other than my eyes getting really big and me wanting more. I'm getting excited to celebrate my birthday with a party tomorrow. It's a day early but we didn't want to have my party on a Sunday with going to church and all. It will be fun and don't worry...I will make sure mommy puts lots of pictures on the blog about the party so you can see how much fun we all had. Well, I gotta let mommy go so catch you all later. Goodnight everyone.

July 23, 2008

I know it has been such a long time since I have written so hello everyone. Mommy and daddy have been doing a good job all this month with having me by themselves at night with no nurse. Things have been pretty busy around here though. Guess what...I am having my 1st birthday party on Saturday!!!! Can you believe that I will be 1 year old on July 27 which is Sunday? I'm a big bad dude. Nana and Papa and Aunt Michele are flying in on Thursday and will be here for a few days. That's why we are having my party on Saturday over at grandma's house. It will be so much fun and I hope I get to eat lots of cake! :-) Today, we had some people from the WV Deaf and Blind School come to see about my vision. I actually did ok. I tend to see more off to my left than anywhere else and they left mommy and daddy with some cool little toys to help me learn to hopefully see better and to work with me to try and get me to see off to my right as well. Mommy and daddy have more stuff to do now. :-) It's cool though...mommy is very excited to be able to work with me and have some fun with me now knowing what I can see and where and all that. I know mommy and daddy will do a very good job and they have also offered to come out every so often to work with me some more and give mommy and daddy some more insight as to what they can do and how I have improved. Pretty cool stuff. My occupational therapist also ordered me this week a feeder type seat to where I can sit up in a full upright position with support as well as being able to rest my head. It also reclines too though. I can't wait until it gets here to try it out. I think I will like it a whole lot. Well, I will let mommy go now so she can get a few things in order before Mrs. Johnson gets here. She has offered to watch me tonight so mommy and daddy can sleep good tonight. Grandma actually had me last night too by herself so mommy could get a little rest. Only about a week or so left before mommy and daddy have the nurse back. Catch everyone later.

July 12, 2008

Hi There everybody. Just wanted to let you know that I haven't dropped off the face of the earth!! :-) Mommy and daddy have been busy with me and trying to get sleep as well since we don't have a nurse for another 3 weeks. Daddy and mommy have done a great job though so far this week. I actually slept for them last night from about 8:00pm until about 1:00am! That's pretty good I think. Only 3 more weeks to go. Well, I have had a pretty long day today. When I woke up this morning I was really gassy and just fussy and hot. Well, that started a whole gamma of things. From the cooling vest to a bath to mommy holding me to being on the floor to getting Tylenol to playing my music box. It was fun around here this morning. We then had to take my Auntie Foo Foo and cousin Alysa back today and so already being fussy was not a fun trip. I slept most of the way home though so mommy and grandma got a little break. :-) After that trip today I came home and was finally glad to stretch out on my play area and yes...got a little hot again so out came the vest and then mommy and daddy took me in the hot tub. I had so much fun kicking my legs and laughing and playing in my little boat and it cooled me off which was nice. I'm trying to wind down now from a long day and maybe I'll sleep again for mommy and daddy tonight. I will talk to everyone later and even though mommy and me may not get to the blog every night we will try to write at least once a week for the next several weeks. It all depends on how good I am and how tired mommy and daddy are. Catch you all later. Goodnight.

New Poster Boy For COKE?

July 4, 2008

Good evening there folks. We did our fireworks last night since Uncle Frankie had to work today and the weekend. It was lots of fun. We had a picnic over at grandma's and ate way too much again. Today we just hung out at grandma's and played games and I slept some and we just had some good ole fashioned fun. Well, mommy and daddy are in for some fun the rest of this month. Long story short is now my medicaid for the month of July does not cover any kind of nursing. It's really stupid and no fault of our own either because people don't let you know what is exactly going on and what you need to do. So, because my medicaid is not covering the month of July and Daddy's insurance does not cover any nursing either we don't have any nursing coverage until August. Unless Daddy and mommy can come up with about $4,000 in order to pay the nurse to be here they have to do it all by themselves. Hopefully though I will be a good boy for them and sleep a little bit at nights so that mommy and daddy can get some sleep. I know though that they will work it all out and things will work out but if you think about it pray for mommy and daddy to have the strength to get through the next 4 weeks!! Well, I will let mommy go so she can get settled and get some rest the first part of the night as daddy will be up for the first part of the night in order to let mommy get some sleep and then she will get up and let daddy get some sleep. Goodnight everyone.

July 2, 2008

Today was kind of a busy day today for me. Mommy had me in my bumbo seat this morning for a little bit and I liked sitting up and even burped a few times. My bumbo seat helps me learn how to sit and hold my head up. Alysa and Auntie Foo Foo came over this morning again and Alysa and I had fun together. She played with me a little bit in my bumbo seat and she suctioned me out quite a few times today too and is getting really good at it. I also threw up just a little bit clearing all the phlegm from my throat and so mommy had to give me a bath and Alysa helped mommy do that. Then Alysa picked out my cute outfit that I am wearing in these pictures and I look so darn cute if I must say so myself. It was then medicine time and Alysa learned today how to give me my medicines and she did good. We had to go to Walmart too and so Alysa pushed me all through Walmart. We then spent some time over at grandmas this evening and so now I am very tired and hopefully will sleep good tonight. At grandma's I had about a teaspoonful of baby cereal and that was yummy. I'm ready to call it a night so I'll let mommy go and talk to you all later. Nite Nite.

Comfy?

July 1, 2008

Boy, where in the world did June go? It's hard to believe that at the end of this month I will be a year old! Mommy and daddy are going to have a special party for me and my Nana and papa and hopefully aunt Michele will be here. Well, I had fun again today with Auntie Foo Foo and cousin Alysa. And guess what Alyssa did today for me...she suctioned me out all by herself. Mommy was getting my medicines ready and Auntie Foo Foo wasn't sure about it so Alysa stepped in and did it all by herself and did a good job. She also did it again this evening too. We have been teaching her how to do it the past few days and today she just stepped up and did it. Thanks Alysa. Mommy and Alysa colored again this afternoon while Auntie held me for a while. I was in a relaxed mood today and just not feeling too good. I have been slobbering a whole lot today and my toofies are bothering me. While we were over at grandma's this evening she put some orajel on my gums and that helped settle me down and I went to sleep for a few hours. I also had a little bit of grape juice from my bottle. Just a few sips but it helped my mouth feel better. I didn't know that grape juice was a little bitter but I soon found out. :-) Well, goodnight everyone and I will talk to you later.