BAHA Hearing Aids

I forgot to mention back when D- was about 6 months old we were able to get him a hearing aid. The insurance company told us they don't cover hearing-aids... "It's considered a luxury"! Can you imagine? That was one of those moments when I couldn't quite understand if I was actually talking to a human being.

I was fortunate enough to be attending a program at Women's Hospital for pre-mature babies (even though he wasn't). Funny, I can't recall why D- qualified. Anyway there was a lady who worked there and happened to call me about something when we eventually came to the topic of insurance and that hearing is a luxury. Her son happened to be deaf and was told the same thing several years earlier. She said don't take no for an answer! That it's their job to say NO and it's my job to say NO back. (At least don't take NO right away.)

After SEVERAL phone calls, biting my tongue and enough tears to fill the tub, I won! Did I mention the aid was about $8000? They ended up covering 80%, it's was a battle won as far as I was concerned.

Drake @ 2months giving the BAHA a trial run!

Funny thing... D- HATED IT!!! Isn't that typical, to want something so bad only to find out it wasn't what you thought it was in the first place. Don't get me wrong, he still needed it and uses it, but it made him cry and to this day only tolerates it for a short time. That to will come in time and with therapy and good teachers and lots of patience, this too shall pass. But for a short moment I had victory!

Drake's hearing loss is called a "Bone Conduction Hearing Loss". His aid is a BAHA. As you might recall, he has no openings in his ears and we're waiting for him to turn 5 or 6 to get another MRI to see what has developed internally. Untill then he has to wear a handband with his aid attached. I don't blame him, I wouldn't want to wear that thing either (which is by the way VERY TIGHT)! He's such a trooper!!!

Party All Night.

It didn't take long after being at home to be exhausted... again. Since Drake wasn't swallowing well, it made it difficult to sleep though the night. Let me rephrase that, it wasn't difficult, it was impossible. It was like having a newborn again who couldn't only, not sleep, but not breath well either. We set Drake's bed in the living room so who ever was "on duty" could watch the TV and be near the kitchen (two important things to get through such trials). We already had the rocking chair in the living room so that helped as well. It was like a party all night long... every night. I don't remember even doing that in my 20's more than one night in a row.
Then there was the equipment that was sent home. The feeding pump itself, the IV pole, the loud obnoxious suction machine; then the bags, tube extensions, syringes (60cc & 10cc), tape and gauze. I didn't realize how these items would become a part of D's everyday life from there on.
D was not tolerating his "feeds" well. They stared him on a continuous flow. That meant the feeding pump was feeding him around the clock, 24/7. Yea, I agree, as much as I like to eat, that's a little too much for me too. So after about 4 days of him crying, choking and trying to vomit, I decided to cut the machine off for the night and continue in the morning. Guess what? He stopped crying and even got a couple hours sleep. Of course I was on the phone with the doctor first thing in the morning and they agreed to set up a feeding schedule to get him proper nutrition. ( I also didn't realize this would become an on going problem for the next few years...still going on as of 7/1/09)
I was able to set up a great line of communication (in other words, on a daily basis) with the feeding specialist, Dr.C-. She is a doctor who has made a difference in D's life. She not only returns calls, but thinks outside the box on ways to get your child to get the proper nutrition. I wish I had all the details of that written down or in my mind. We tried so many different volumes, rates, times, and formulas. Needless to say D is VERY sensitive and now we have added a "simple" stomach operation to help. I truly doubted myself weather or not I had done the right thing about having the G-Tube and Nissen done. Not that I had much choice with the whole aspirations thing, but as a Mom I still felt this horrible pain of guilt.
One thing I'll say and I've said it a over and over again. The doctors who care and especially the doctors who seem "too busy", don't have to go home deal with the trials of a special needs child. This is a life long process of trial-&-errors. It's physically, emotionally, and especially mentally draining. Shane and I have seen the faces of parents who older special needs kids. They all seem to look tired and drained. I guess after being up for 20 or more years, talking to doctors, battling with insurance companies, fighting for medicaid programs, trying to get the best teachers and therapists in the school system, testing witch drugs work and don't work, not to mention the everyday life epically if other children are involved. Can you imagine the parents who have multiple special needs children... WHEW!!! I think every doctor/intern should have to live with a family of a special needs child to see what really goes on when they leave the office.

Summer Love!!!

Love the smiles and G- in the background!

09' Christmas card? Just you wait to see what we have in store!!!



D- & Mommy


D- & Daddy

A Brother's Love!!! There's nothing better that I've witnessed in my life than the love between these two boys!!!

My first boat ride...I love the wind in my hair, the roar of the engines in the water and the rocking of the boat!






Drake's not very fond of what it takes to get to the beach. The car trip consists of vomiting a few times, stopping every hour or so to give his little bum a breather from the chair, waking up in a strange bed and being scared for the first few nights and doesn't tolerate the sand much. You might even ask ...why? Is it worth all the hassle to get there?

Most definitely, YES!!! Drake does love getting to the pool everyday, having everyone close and loving on him, getting outside as often as possible and being a part of what everyone wants... love! Who doesn't benefit from a little one-on-one family time and that BIG BROTHER hanging on his every move?!?!? I hope we can continue to go to the beach every year for sanity of us ALL, even if the trip there and back is the sacrifice Drake makes for the family... Thanks baby!!!
( I know, I know... you're not a baby any more!)

"MOMMY & DRAKE"

this is what makes it ALL worth while!!!

Last day of School @ Gateway!

End-of-Year Pre-School Program

He truly loves that Ms. Ann!!

And the docs say he can't see!?!?!?

Drake with ALL his pre-school buddies...
I think he might even be looking across the room @ Mommy!


Drake and his class-mate... he's so proud of his "little" friend.
They've known each other since he was 4 months old.

D- & Mrs. Ann... definitely a "moment".

D- and Mr. O.T.

She gets the quirky side of D-!!!

D- & Mrs. Betty (asst. teach)

Well Drake's first year in pre-school started off a little rough, but ended with a GRAND finally! He's made HUGE strides by tolerating his stander (a little), looking at people when they approach, turning his head to his name, loving computer time while using the head switch, even taking a try at a head switch controlled wheel chair ( and it's working!!!).

I was so worried about leaving Mrs. Lori from the GSO CP Toddler Program. Only to find another extension of love and compassion from a group of people that really do LOVE these kids and see them for who they really are... kids who want to be a part of this world!

Thanks Gateway for another GREAT year!!!

2 Points!!!

I was looking in my files for pictures of Drake when I found this. Isn't it funny to see his curious smile about the "new" toy that had just landed in his lap!!!

Grant had been shooting hoops at our garage for some time while Drake sat and watched (without an argument because he loves his big brother soooooooooo much). D' likes to lick his toys and I didn't really like the thought of what all touches G's ball. Between the dirt on the driveway off the tires (which has been who knows where) , the slobber from the dog (that has been eating who knows what) and big brother dripping (who knows why all over his ball), I thought it was time to get Drake his own!!!

I know, I know... a little dirt never hurt anyone and G' has proved that theory to it's fullest! I'm just not quite ready to test it on D'.

I'm glad I caught this moment on my camera, what a new ball really can mean to a little boy... even if he can't throw it on his own... I believe Mommy made two points that day!!!