Monday, December 1, 2008

Still waiting

One more day until the next increase...

Will it be the dose that works? Hope so...

We're still fighting these big drops. Man, if it wasn't for that, this whole mess would be soooo much easier to deal with. But, all we can really do is wait it out and try to adjust our lives around it. Like the helmet or padding this and that. And pray that this will all be over soon.

But, you know, I really have to say that Austin's smiles make this battle worth fighting. He is such a happy boy despite everything he's been through. All it takes is a little bit of floor space and he's good to go! Squealing and laughing and all his"AAHHs" and "EEHHs". I can't help but laugh out loud whenever he walks.
The walking has been limited these past few days. I tried to create a temporary head support until we get the helmet, but I still fear that it's not enough. It's really hard for me to just let go of those little hands. That is ALL he really wants to do, so holding on is painful...and tiring because he wants to go anywhere and everywhere...but my back doesn't! I keep telling myself that it's just's just temporary. Either the vigabatrin is going to do it's job, or the helmet will protect his little head. I can't see myself letting him go on the hard floor even with the helmet, but at least I will take more comfort in him walking around his playroom. And I know he needs that. He's such an independent little boy!

I hope you all didn't eat as much as I did over the weekend. I think I had turkey and dressing for 7 meals! I believe I'm good 'til Christmas! ;) But, man, was it delicious! And Austin thought so too. It's very rare that he will accept textured food. We're still on the good ole Stage 2's. When I try to sneak in a Stage 3, he lets me know that he's on to me...But, I guess the taste was worth the funny feeling in his mouth. He chowed down on dressing (mixed w/ a little cranbury sauce), dumplings, sweet potato casserole, broccoli cheese casserole...I couldn't believe it! And with a repetitive "Mmmm", with every bite! Of course I had to mash it all until it was practically puree, I was still impressed to see that he took it as well as he did...and enjoyed it! Grammer and Nana, y'all did good!

1 comment:

Jamie said...

Way to go with the eating!! Im jealous! We go see feeding GI folks in 2 weeks! maybe then I can stop wasting food! gah!
Oh lil guy hang in there! Keep us posted mama!