Thursday, September 25, 2008

Go Austin Go!!! 11 months today!

11 months old...and taking his first steps!
Going to get his lion!

I've got an awesome update for you all!

Remember the other day when I said that walking would be coming soon????

WELL....He took his first steps last night!! Yeah Austin! One day before turning 11 months! He's been doing the one-foot step for, oh, about a week now. He'd step with one foot, but couldn't quite shift his weight do step with the other one. I tell ya, he does great things after his occupational therapy! He got the hang of his standing the evening when Miss Brenda (his therapist) came. She came again yesterday, and, low and behold...

She told me it seemed to be the weight-shifting that was holding him back, so she showed me a couple tips on how to help him out. I guess it worked! He's not walking all over the place, just about 5-6 steps at a time, but maybe that's how they start?? I don't know, this is my first experience. I wouldn't expect them to be immediately running around...

Anyhoo, I couldn't be more thrilled! I don't care if he is about to be getting into everything! My baby's starting to walk!!! :)

I was so surprised because yesterday seemed to be one of the worst days for him and his spasms in a looonnng time. They were coming right and left. I was all over the place trying to figure out what triggered them to increase so much. His neuro called me back on Tues and said any type of illness (he had an ear infection) would increase them. But, I took him back to the pedi that same day and she said we could discontinue the antibiotics because his ear looked fine. It seemed to be coming out of nowhere. I ended up trying to get in touch with the epilepsy clinic to get him an appointment with an epileptologist. What a nightmare! I got transferred about 6 times and never got anything accomplished! I'm still waiting on the "scheduler" to call me back. I also did some digging and found some email addresses, so hopefully that will get me somewhere too. I am desperate to get a better doc to treat him. I'm just crossing my fingers that the wait to see one won't take months and months...

His current neuro shot me down again on the Vigabatrin topic. She said AGAIN that it will only benefit children with symptomatic IS (where there is a cause for the IS). So, I got on my trusty web group and threw that question out there. The response was phenomenal...There were so many parents that told me it helped their children...even ones that HAVE NO KNOWN CAUSE!! Some even said it worked with the first dose, or in four days, or the IS has been resolved for 3 and 4 years...I honestly think her (the neuro) lack of experience is why she won't try it. She won't even increase the only med that has been proven to help his spasms (Zonegran). I know for a fact that there are babies smaller than Austin on higher doses. She even said herself that an epileptologist may be more comfortable with increasing it. She wants to keep increasing the Keppra instead...the one that has done absolutely NOTHING!

I think our best hope is to find someone else...regardless of whether or not that doc will prescribe the Vigabatrin. Austin deserves more.


JSmith5780 said...

CONGRATS on the walking. How exciting!

One caution, now that he is mobile, make sure corners and edges of furniture are padded. He has further to fall now witha seizure :(


baby trevor's mommy said...

Whoo-hoo for Austin. Uh-oh for mommy! *smile* Now begins the real fun of mommy-hood...and toddler hood...the getting into everything!

The last thing I want to do is be nosey...or make things more complicated...but it really couldn't hurt to get a 2nd opinion. Vigabatrin has been a miracle for so many's worth giving Austin the chance! As things stand for us...we'll be moving onto Vig soon I think.

But in the meantime...I'm thrilled that your baby boy is doing SO well! His little face is too cute!