Picnic

David balancing

This is a video of me trying to balance myself and try and push myself up. Toward the end I am actually semi sitting as well. Fun stuff.

Haircut!

This afternoon mommy and grandma decided to give me a little boy haircut...what do you think? I think I look pretty handsome! The first two pics are before and I still look cute but the last two pics are the final product and they really rock. :-) In the words of grandma, "How can one little boy be so cute?"

New way of sitting me up.

Tummy Hurts!

This is a little video of me showing mommy that my tummy hurts and I gotta poop or pass gas. Mommy has gotten pretty good at watching for clues and I've started grabbing at my tummy and such when it hurts. Since I can't talk to mommy or tell her what's bothering me I have to do something and this is what it is. :-)

Who's the cutie?

Mom...come on...get me out of this monkey suit already.

Neurologist appointment

Hello everyone. Just writing and checking in to tell you all that I had my neurologist appointment on Thursday and things went pretty well. We are now going to make the switch of weaning me off my Phenobarbital and put me on Topamax. The doctor said that it will probably help me be a little more alert and interactive and might be able to participate more in my different therapies and such. Just to let you know though this is a 6 month long process to get me off my phenobarb and on to the topamax. It has to be a slow weaning process because I've been on it for so long. Also he said there could be some possible break through seizures until the topomax reaches the level in my body that it needs to while decreasing the phenobarb but it will all work out. Mommy is a good sport and we'll make it through this. I go back to see the neurologist in 3 months which will be October 1 just to see how things are going with the whole process. Just another thing mommy has to try and keep straight because there is a certain formula that has to be followed each and every week through this whole process for 6 months until the phenobarb is out of my system. Mommy is still using the Melatonin and we are starting to see a little difference! I actually sleep for at least a solid 3 to 4 hours now! Again though this all takes time and we have until October as well to see if the Melatonin is going to work for me. So we'll see what happens. I wanted to mention too that we got word that I can no longer recieve my WV Medicaid because daddy makes $30 more than what's allowed. Yeah...it's pretty stupid but mommy is trying her best to see what she can do and so now we have to pay for every doctor appointment that I have like the neurologist we just saw and my pediatrician at the end of the month and so forth and so on. So, that's the latest news on what's going on here with me. Hope this day finds everyone well.

David and his monster.

Daddy and mommy have been trying to get me used to a stuffed animal and so daddy thought this was perfect for me...it is soft and has a lot of different things for me to feel.

Just chillin'

Father's Day!

This was my Father's Day card for daddy! Mommy and Aunt Roof and I had a day out on Friday and so we stopped to pick up daddy a card and mommy let me pick what I was going to give to daddy. Mommy even put the pen in my hand and let me sign daddy's card. It was fun and if you can't make out my jumble on the card is says that "I love daddy." And that I do.

Getting to be such a handsome big boy!

starting to sleep with his legs up and bent a lot more.

Mommy made use of the frame for my swing bed and put my red swing on it for now.

I buried my face.

Learning to use baby walker

How amazing is our God! Look at me would you? This is a video of me trying and learning to use my baby walker. Not too bad. I am also moving my arms feeling and playing with the toys on the walker. If you watch very closely there are two brief times where I do try to make the walker go forward. I know I still need a lot of work but this is a start and you just keep watching and see how much better I progress...I'll tell mommy to keep the camera rolling. Enjoy this one for now.

Kennedy Kreiger Visit

Hello Everyone. We just had another 6 month check up yesterday at Kennedy Kreiger Institute in Baltimore. I am doing well they say. I'm still growing good for my height and weight. I'm not too plump for some of you who think I'm a big boy. :-) The feeding me baby food through my tube seems to be working well and I think Dr. Levey was surprised how well it was doing too. He suggested though that mommy could start trying meats with me now as well. He said we can play around with the food. It's time though now for mommy to get some physical therapy going on just because I am becoming so much more active and things and it may help my muscles get stronger and develop better. Bring it on. :-) Also there is no rush he said but thinks it's also a good idea for me to start seeing an orthopedic to help with keeping my spine aligned and joints working properly and would probably help with my legs and how I don't stand or walk on my flat feet. He said they could set me up with an orthopedic at Kennedy Kreiger but not sure how daddy's insurance would pay for that if anything. I'm sure it will all work out though and we have some time so it's not like I have to do it today. He also ordered a test called a VCUG in which they will see about my kidneys and see which way things are going in there to see if I need to continue with my amoxicillin. I have a grade 4 reflux in my left kidney which can cause urinary tract infections and stuff and so I was put on amoxicillin when I was born as a maintenance kind of thing but haven't had any infections or anything praise God so we'll see if it needs to continue or if it's better as i've gotten older and might not need the amoxicillin. Now it's just a matter of mommy finding a hospital or place who specializes in doing pediatrics and let them do it. Again...no rush which is good 'cause it may take some time to find someone to do it but again...it will work out. Boy, mommy has her work cut out for her trying to find some appointments for me. :-) So, all in all it was a very good visit. We are also trying the Melatonin again in hopes to reset my clock to where I'm sleeping at night. He said that it may take 3 or 4 months to see a difference if it's going to work for me so we have until October now to see if the Melatonin will even help. I am praying it helps though. I slept good last night though! Although my pattern was all off anyways from being out all day so I think I was a little extra tired as well. Hope everyone is doing ok. Just thought I'd give you an update as to our visit at KK.

Too hot!

Mommy got creative yesterday when it was sooo hot out and I was getting very hot myself. Mommy would just leave me in my diaper but the only problem is I like to pull on my tube so sh had to figure out a way to cover it so I wouldn't pull on it. So...the first 2 pictures are the first results...mommy took a bandanna and tied it around my waist. Only problem...I liked to pull the knot and it wasn't very tight because mommy didn't want to get it too tight and so it fell off everytime I moved. So today...the last 2 pictures are the result of another step. Mommy had some velcro and used that and it seems to be staying a little better. It's a work in progress. :-)

Still trying to get over

I am still on the move. As you watch this video you will see about half way through that I am starting to do this new thing with my leg and stick it straight out and up. Mommy said the other day that if I could walk and get around she probably couldn't keep up with me. I ware her out now as it is. :-) As you can see too or may notice that by the end of the video I'm practically off my mat and just from my waist up was on the mat. I keep working on rolling over and one of these days mommy will have that video on here...you just wait and see. :-)

Happy Boy!

David is still on the move...he is such a happy boy.

So handsome and big!

Who is that little handsome man?

ok mom...enough is enough can't you see I don't want in here?

Getting big because now you can see his feet touch the floor in his walker now!