A Little Sunshine always makes you feel Good...... A Day At The Park

Billy, Brittany,and Spencer had a wonderfull time at the park today.......

"DOCTOR'S" got to love them........NOT!!!

Okay, I am climbing aboard the wonderful soap box train again.......
I called about Billy's chest x-ray yesterday, just like the doctor told me to. Of course you never get to speak to a human.....and of course the "electronic " a## says leave a message and some one will get back to you within 24 hours and only leave one message. So.......... that is what I did, one message, waited 24 hours. Do you think any one returned my call, NO of course they didn't.
So 24 hours from my call yesterday I call again, finally this afternoon they call me back, I finally get to talk to a human. First of all they proceed to tell me that they have lost Billy's chart (they could not find it the other day when we were there either). Tell me........... how do you loose a chart that is the size of three encyclopedia's??????? Anyway lets get to the results of the chest x-ray. After the nurse went back and forth asking the doctor questions, because I was not going to except that he read it, signed off on it so it must have been okay, This is what I got...........He is STABLE............................."Stable" What the Hell does that mean??? Can anyone tell me, Please?????
I just can not believe this. I wanted to know for one, has Billy's lung re inflated itself, has the collapse done more damage,etc. Sorry, Sorry ,Sorry, I am just so ill, I could scream.UGGGGGG
Okay I am going to calm down and report that Billy had a really great day. The weather was beautiful. We were able to get out side this afternoon. Billy and Spencer got to ride the golf cart. I wish I could have gotten some pictures but these two wild monkeys had to be watched very carefully. We are hoping for more great weather this weekend so we can join daddy and Brittany at the race track "Muddy Creek". Hope everyone has a great weekend!!!!

The Waiting Game once again

I really cant wait to start posting about good stuff, fun stuff or just good health stuff.
But for now I am going to post about this not so fun day. We had to take Billy back to the Pulmonologist today. He has been having trouble breathing. He is fine when he inhales but struggles with his exhale. What was the answer from the Pulmonologist????? No clue. Don't get me wrong , this is the best doctor ever he has been my saving grace for almost 11 years. The problem is Billy's saturation's are awesome, he sounds good and has no other symptoms. He is just having trouble exhaling. His whole chest and stomach sink in. We took him for a chest x-ray and will find out the results tomorrow. Steve and Dr Mohan decided they think it is neurological, thinking it is stemmed from the status seizure. I on the other hand do not feel comfortable guessing. I want facts. The thought of something happening scares me to death, I can't imagine having to do CPR on him because of something that could have fixed or prevented. I know I am being paranoid but I am a "mom ", that's what we do!!!!!
Please keep Billy in your prayers, I am praying that dad and doc are right after all the test come back.
So once again we are playing the oh so dreaded "Waiting Game"

Foot Prints!!!

We had Billy's foot prints put in the sidewalk when we built our house in 2005.Boy has he grown!!

"Mothers Day 2009"

Brittany headed into the woods!

Steve taking Brittany for a rid in the Razer!

Look at that sneaking grin!!!

Off they go!

I got my fern's for Mothers day

Get a good look at tham while they are still green!

Sweetest Face Ever!! HAPPY MOTHERS DAY TO ALL MOMS!!!!!!

What a day!!!!

Mothers day is a "glorious" day with many mixed emotions. The emotions of loosing my mother almost 3 years ago, and missing her especially on Mothers Day. I wonder as she looks down on me from heaven........ What does she think of me as a mother. It is funny as I go through my everyday routines I can sometimes feel her presents, I can almost hear her telling me " get it together girl , stand your ground and all will be fine". She use to tell me this all the time except for those days that only my mother knew about. The days I just could not get together, the days I just wanted to give up, the days only a mother can make better. I find myself from time to time picking up the phone and dialing her number, just to remember she is not there. Does it get easier????

Another emotion I experienced this mothers day was the pain in my heart for all those mothers that have lost there precious children. Since beginning this journey almost eleven years ago of having a child with a chronic illness, i have met so many mom's with "sick" kids. Through this journey many of these children have received their wings. I have met many moms of kids that have also passed do to accidents and not to forget all of the fallen soldiers that have gave their lives for our country.... My heart aches for "all" these moms.

It makes me reflect on my own life as a mother starting almost 20 years ago. Where would I be today without Chelsea....... my 19 year old that drives me crazy sometimes, but has also become my new best friend. Where would I be without Billy my 10 year old that keeps me on my toes, that's smile lights up the room, that appreciates everything and asks for nothing. My other 10 year old Brittany, even though she has only been with us for a few years , where would I be without her, She keeps me full of life (she never slows down). A day does not and will not go by without me telling my children I love them, even if its after scolding them or grounding them. Life is way to short and none of us are promised tomorrow.........

Our day began with a big breakfast ( yes I cooked, the mom and wife in me wouldn't have it any other way, I am allot like my grandpa, I like no one in my kitchen ). Afterward we played out side for most of the day. Steve, Brittany and some of our friend rode motor cycles and these crazy buggies in the woods behind the house. Billy and I rode the golf cart and watched. The golf cart is as fast as I want to go. I like my behind planted safely on the seat of a slow going vehicle. Steve and the kids took me out to dinner and got me ferns for the front porch. I hope I can manage to keep them alive this year. Over all it was a wonderful day!!!!

SPECIALIST,SPECIALIST,SPECIALIST!!!!!~

Update on Billy!!
This past week we have continued to seek answers on why Billy suddenly out of no where had a "status seizure" three weeks ago. Some times I feel like I am banging my head against a wall. On Tuesday we saw the Developmntal Pediatrician from Charlotsville. He said he could only speculate ( isn't this what all doctors do any way?). His speculation was......... Are you ready........ that it was just time. Well ,Hello, time???????? I am asuming that he meant that because Billy has only had small seizures for so long that it had been building up. What ever , scratch that visit. We had never seen this doctor before, we always see his partner which we will continue to do in the future.
So................... on Thursday we saw the Neurologist Dr. Taft (he is the best) from Charlotville. He has been Billy's Neurologist since he was a baby. He is the one that finally agreed to take him off Phenabarbatal years ago.
So here we go...... His very educated speculation............
Since Billy is in Tanner stage IV puberty at ten years old (very early) and he is high on the Cerebral Palsy growth chart and because he had a status seizure all of the sudden, he thinks there might be something going on with his pituitary. He wants to rule out a pituitary tumor. He does not think this is the case but wants to rule it out. Because Billy has global brain damage he may just have damage to the pituitary. So our next step is to see an endocronologist. This doctor will evaluate him and check his hormone levels. If his levels are extremely elevated they will do a CT scan with contrast to check for a tumor. Finally we are getting some where!!!
Are we worried???? No!!!! Billy is one tough cookie. I really feel like we will be dealing with damage not a tumor. In all reality this has been a blessing. The quicker Billy gets through Puberty the quicker he stops growing. The smaller Billy is the easier his care will be. Dad is 6ft 4in. If Billy gets this tall I am going to have to ride in the chair and he is going to have to push,lol.
So for now we are taking it one step at a time. We may never find out what caused all of this. But I can tell you that I refuse to believe that this is the begining of a downward spiral for Billy. If anything he has once again gotten us on our toes , things were just getting to boring and he wanted to change them up again.

My handsome boy got a hair cut!!!

Thank You Louetta for the perfect hair cut!!!! YOU ARE THE BEST!!!! Aren't I handsome!

Getting ready for cut. (Before)

The Dreaded "Boots"

This is just some of the stuff we use on a daily basis!!

Billy got his new DAFO's last week, and of course he hates them. But he did walk in them some yesterday and today. He has not took steps in his gait trainer in about a year. It is possible that he might have been trying to walk "out" of them.

I hate having to put them on him...................After watching Billy suffer through a 4 hour seizure the other night and feeling completely helpless I have been doing some real soul searching. I have been asking myself... Am I hurting him by making him do so much.....wear his DAFO's ( leg splints) wear his arm splints, Physical Therapy 3 days weekly, Occupational Therapy 3days a week, Speech Therapy 2 days a week, home bound school 5hrs weekly, botox injections every 3 months. Constantly seeing some sort of specialist for this or that. At what point does it become too much? At what point will I be able to lye down at night and know that I did enough or didn't do too much? I think the problem has been that I am not listening to him, which is not the easiest thing considering he is non-verbal. Some times I wish I had a "BUBBLE" to put him in, to protect him from everything. Is this realistic??? NO!!! He needs to live, he needs to play, and be a little boy, get his socks dirty , wear out the knees of his jeans ,laugh and smile. Just because he is "Differently Abled" does not mean he cant do these things. He just needs us to help him. I am going to work real hard on him having fun instead of work, work, work all the time. I know he has to do these things but maybe not "so" much. Wish me luck!!