Determined

To clap....



To suck on toes....



To get the cat....




Oh shoot, E forgot she moves....


To roll over....




And to be...


Extremely....


Cute!!!

Stud muffin

Just a shameless post just to show off pics of my cute little boy.

TV dinner

Dinner and a Rat

E LOVES Ratatouille. He's so predictable on what parts he finds funny. Yes, our son is holding a medical syringe while he eats. Oh, the funny things medically complex kids find comforting.

Tricking the toddler

We took E to Mayo on Monday for a follow-up GI appt. Everything went well, his GI doc was actually pleased with his weight gain (HOOORAY!!!!)

While we where there I mentioned that E was starting to like to taste things. Great! Well, except that the foods he likes- vanilla pudding, potato chips, french fries, frosted animal crackers....
All really high in fat, which means lots and lots of poo. Probably not good choices for a kid w/ 1/4 of his bowel. So we decided to try E on a new diet. Yummy, yummy Gerber foods.

Ohh, Mommy bought me a new cookie


What the heck is this thing....

Get that doctor on the phone, this is just unacceptable.

LOL, well I guess E isn't ok w/ rice crackers. He polietly objected by taking each cracker, crushing them and sweeping his hands back and forth on his tray until every piece was on the floor. I talked to his GI doc again after we got home and got the ok to just give him tastes of what he wants. As long as he doesn't loose weight, he can poop as much as his little gut desires. I don't mind, E's happy, we use cloth, it all washes :)

Go go power Eli

We have our demo power chair for a week. E's getting a be a pro going around the outside of the house. We live in a split and no way to get it into the house, but E doesn't mind. He much prefers the outback experience, going over the grass and rocks on the higher speed. That's my boy.

Happy Birthday Baby

Who knows what today is?
You didn't forget did you?
Yep, that's rightE's two (no E, not five)Now make Elmo dance for EAhhh, the simple pleasures of a two year old :)

Chubs

Aren't they beeeeautiful?

Thank you Uncle Sam

We where finally able to get E another bumbo seat. We had one Dec 06, but returned it the next day as E just didn't have the strength.




























We where just at Target today and had our extra Uncle Sam money, so I thought heck why not give one another shot. And oh my gosh, does E love it!






We do have a few adaptive chairs, the only disadvantage is they are a lot bigger and have to be strapped on to another chair to make them work. The bumbo is so nice and easy. Just one piece and another plus is they now come with a tray. How cool does E look!





Best $50 investment EVER! I love this pic, E is just smiling while playing with his toys.



And gotta love husbands, he decided the toy wasn't entertaining enough so he turned him around.



And just a quick glimpse at our fun weekend. A swarm of little pink divas.

E says, "Lets do this!"

Sharing the E

Sorry, I know it's been a month since my last post. I have been soooo busy trying to keep up with my sewing. Here's evidence that I'm not just eating bon-bons and watching soaps, lol!


I thought everyone would enjoy some new E pics. He has been doing well. No hospital visits and all our sickies he has seemed to recover w/o any extra interventions. Yay E!


E is up to 13 lbs 2 oz and 26 inches. He looks so big to us! He's been working hard with his therapists and has really been tolerating so much more lately. On good days, he will stand for ~5 minutes in his stander or sit in his chair for 20 minutes. Even longer if his chickens are on tv :)


And he's been doing soooo much better at wearing his glasses. I think it may be starting to click that he can actually see better with them on. That or he's getting smarter in knowing Mommy will just put them back on when he whips the off :) We're not at wearing them all day yet, but he will leave them on for an activity. His absolute favorite is flipping the song page back and forth on his favorite toy from PT. We haven't been able to find it yet, but E LOVES this thing. His teacher forgot it last Friday, so we got to play with it for a few extra days. E cried when I tried to put it in his room with his other equipment from the school. Oh well, what's a few extra days of play :)


As soon as it gets warmer we will start working more on learning a power chair. It's a little hard to learn how to roam in the snow. Once E figures out how to work a switch, we can start the process of convincing MA that he needs one. We've already bumped heads with insurance in trying to convince them that he's almost TWO, even though he is the size of an infant :(


Anyhow, lots of uphill battles and appeals coming our way. But we have lots of great therapists that are working hard as advocates to get E what he needs.


We have a busy week again. Tuesday is E's MRI & appt w/ the neurosurgeon to follow-up on his hydrocephalus. Wednesday we go back to Mayo for a GI follow-up. So lots of prayers the appointments both go well and E doesn't find any GI bugs in the meantime.

And no, he's not taking anything by mouth (other then a little juice from an eye dropper). We gave him a cup to try and encourage him to try it. But E thinks it's just a "bang bang" toy!