The Phamily Blog

Thanks to Chrystal for always finding the coolest videos and links. I cannot wait for this!

It should air on HBO sometime in October!

Okay, so I hate to say this but lately Gabby is.... well... mean? I shouldn't even say lately, because she has been a pistol ever since I can remember but recently it's been like WHOA. We're working on it though, I swear.

Anyway, that being said...yesterday my girl was being exceptionally nice to Nguyen's mom. So nice, that the first thing that came to mind was for me to go grab my camera. She's not really into anyone other than her most favorite lady in the world me, so this was really something for her to be letting anyone in her "space."

Enjoy the lovefest:

I'm having one of those days where I'm feeling sorry for Gabby and maybe a little sorry for myself too. I hate it when I get like this...It's pointless, stupid, and completely unnecessary. And to be honest, this really doesn't happen that often but when it does, it just sucks.

I'm not sure what set me off but today as I sat at the computer catching up on all of my blog subscriptions, my eyes wandered over to my baby who I thought was contently playing with her puzzles on the floor of the living room. Instead, I focused on a little girl who was diligently trying to stand up, catch her balance, and take a few steps. She would take some steps, fall down, and do it again. And again. And again.

Naturally, this should excite me. Instead I just feel tired and defeated for her. It shouldn't be this hard. She'll be TWO in a few weeks. TWO! No matter how hard I try and take things day by day, it always catches up to me. Always. She's been tackling this new feat for over two months now and it's hard not to wonder if there's something I'm missing...something more I should be doing. I know I do the best I can but really...is my best good enough? Being a parent is hard.

We went out to dinner with some friends last night and had a great time. They brought along their two adorable spunky girls (4 and 1) which I am sure was a bit "eye-opening" for me and may have had something to do with my ho-hum attitude this afternoon. I know it's not their fault that they happen to have a typically developing little girl who is over a year younger than Gabs who is doing SO much more than my baby. And for what it's worth, I had a great time last night and never once was I sad. I definitely noticed things...Like how this little girl was having a full on conversation with me (seriously, what is that about?...Cameron didn't even talk until he was almost THREE!) or how she was chowing down effortlessly on chips and salsa, or how she was climbing and running everywhere and anywhere. I saw it. Only I didn't choose to feel sad about it until today.

I hate that I compare. I'm such a hypocrite. I read blogs CONSTANTLY about the same situations. I should read my own advice. "All babies are different" "She'll do it when she's ready." Blah.Blah.Blah. I know this. Deep in my heart, I know. I just don't care right now. I want to be sad today. My guess is that I'll wake up tomorrow morning, and I'll be back to my happy-go-lucky self. I hope so.

The fact of the matter is that this is normal stuff. I can't expect everyday to be perfect. This is an uphill race I'm in and I'm bound to get tired at some point along the way. Just thought I would keep it real for all of you out there.

I can't remember if I shared this video already but if not:



How cute is that?

Well guess what? The book is almost ready to ship and you can pre-order your signed copy at a special price of $19.95 (regularly $29.95) today if you want by going here: The Other Person Is You. That's not even the coolest part...There is an option there where you can search your local Ds organization and at least $5 from every sale will go directly to the organization of your choosing. I ordered my copy today and chose our local Down Syndrome Information Alliance to direct my support to.

Know what else is pretty rad? Gabby's friend is probably going to be featured in the book! We can't wait to get our copy.

Order yours today if you haven't already!

This morning we had our third visit with the audiologist. It is not uncommon for children with Down syndrome to have problems with their hearing or with reoccurring ear infections. This is why we have been trying to get an accurate reading on Gabby to see whether or not she is hearing properly. So far, the last two audiology appointments have given us inconclusive results.

She passed her newborn screening with flying colors although I sometimes wonder if that was really the case since we weren't aware that she had Ds until she was already a few days old. Did they conduct the test after they knew? It shouldn't make a difference but it seems like they might try to be extra sure they were getting the correct results if they already knew she had a predisposition to such problems. Doesn't matter now I suppose, but still I wonder.

Anyway, last July she had a follow up with the audiologist. They took Gabby and I into a sound-proof room and I sat her on my lap. The audiologist cued different sounds at different decibels on either side of the room. If Gabby looked towards the sounds, that was good but honestly, she was bored with that whole situation and it didn't matter how loud those sounds were...she wasn't about to turn her head in any direction, no matter what!

Obviously I know she can hear. It seems she can hear a pin drop which is why I am constantly tiptoeing around during nap time and getting on Cameron's case every time he makes a sound. Unfortunately, these audiology reports don't agree with me. At that same appointment last year, they stuck tiny little probes in Gabby's ear that were supposed to tell him something (don't ask me what) and that something told him that Gabby may have some fluid in her teeny tiny ears. I kind of brushed that whole appointment off and we decided to reschedule another appointment at a later time. That follow up appointment was last week and guess what? He got the same pesky results. Gabby is responding at about 50 decibels. Optimum response should be around 20 decibels. So, she's not far off but we really need to figure this out.

I still feel pretty strongly that Gabby can hear well but now I am starting to really wonder if I'm wrong. The audiologist told me last week that the next plan of action would be something I would have to think about... We could have an ear specialist have a look at her to see if he/she could see anything in those tiny ears (since not a single soul has been able to thus far) and/or we could have Gabby put under general anesthesia in order to conduct a test in which small devices are placed behind her ears that measure her response to certain sounds (They read her brainwaves, I guess?) I obviously wanted to avoid that so we met with the ear specialist today. She actually was able to see in Gabby's ear which I was just overjoyed with. The bad news is that Gabby does, indeed have some fluid in there. Whether or not it is preventing her from hearing well, we can't really tell.

So...The ear doctor today felt that we could take the "wait and see" approach. We're going to try for another couple of appointments with the audiologist to see if he is getting the same reading. (Keep in mind that when he sticks those little probes in her ears, she has to be restrained and thus, throws a SCREAMING fit which could, in turn, skew her results) This is why we're going to try again a couple of more times. If the results come back the same, we will proceed with tubes. It's really not a big deal, but at this point, I just feel bad for her...anyone is a white coat is a BAD, BAD person. We've really had enough pokes, prods, and hospital visits to last a lifetime, if you ask me! (Did I mention she landed her tiny butt in the ER on Easter so she could get an IV?) So yeah...people in white coats = no bueno.

So those are the current happenings with Miss Gabalicious. It would actually be nice if we do end up having to go the tube route and she does, indeed hear better...That could mean so much in the way if verbalization. Not that she isn't verbal, it's just that she really doesn't have any solid words other than "uh uh" as she shakes her head, or "nuh nuh" (no no). This could lead us down a path of verbal explosiveness. Hmm...maybe I should think this out a little further! :)