Wednesday, August 31, 2011

Power Chair, LOOK OUT WORLD!

Will post a picture(S) soon, but this update was needed, before the pictures, and my trigger finger his been a little busy operating a remote stop button to get a picture.

Yesterday we picked up William's power chair. The first time we put him in it he did so awesome mama was near tears. We had to do some minor adjusting and positioning, and he was so patient with us. Then it was time to turn it on! He immediately drove straight forward, and turned to go out the door (except we weren't going out the door, it's TEXAS so we had to stay inside), then we headed to drive around a path on the outside of a large room, the room was roughtly square, had 3 offices on the far side away from the wall of windows. In the center of the room was several wheelchairs waiting delivery, or trial. Around the room was a path about large enough for the power chair and one person along side. The power chair is a silvery blue with red race car embroidered on the seat. The chair had head controls he pushes back with his head to go forward, turns his head to the left or right to navigate in those directions. Later we will add a toggle where he can power tilt the chair, or switch to reverse, or increase his speed. Also, there's an attendant control that can move him in other directions by the person walking behind him. It cruises along at a nice slow crawl while inside, and can go faster for outside. We have a remote stop button which is for use to prevent broken windows or falling off curbs while learning to drive. William navigate past the windows, and to the first corner with ease, straight shot, then surprising to everybody navigated the first turn on his own to the left side (right is the easiest side for him to turn, but he showed no problems with left on the corner, then drove perfectly straight again to the other side where the offices were. There were 3 offices each with a door and window. The first door was to the right of the path we're following with the window for the same first office just to the left of the path. At the offices he crashed into the window (stopped by remote stop), Besides who bothered to tell this 3 year old you can't just walk/drive thru windows. So then we repositioned him and started him again. He drove straight and into the first door of the next office and up to her table, and waved hi to the person in that office. Then we backed out him out of the office and sent him on his way again. Again he tried to drive into the 2nd office window, We corrected his path again, and he drove straight into the next office and waved hi to the two people in that office. Next, we pulled him back and sent him on his way again, next he stopped at the window and waved to the people in that 3rd office thru the window, at that point we stopped and put him in his walker so we could make the final adjustments on the walker before taking it home. I was told over and over that he did better than most kids do on the first time BY FAR. And our therapist we showed today at home said he did better than lots of kids do after over a month.

I was so near tears that my baby could finally go, where he wanted that people can actually see he's trying to say HI because "HE" is the one DRIVING. HE HAD the intent, it wasn't just me saying, OH he's waving, when I saw it and no one else did, EVERYONE else could see He is DRIVING...HE CAN TELL WHERE he wants to go!!!


PPS I just have to say thank you to all the therapist that made this possible that believed in us when others didn't, and THANK YOU to Heather Pinkerton with United Seating formerly Rehab Specialties for suggesting we finally get him in one, and MAKING it happen, when I've wanted to for 18 months now or more. Thanks specifically to Bernadine, A'Donna, Yiesha, Lydia (another therapist (PT) who wanted to put us in one months ago), And many others! Thank you also to Family members who have offered up countless prayers for our dear William. Can't forget to Thank TEXAS MEDICAID, and UNITED HEALTH CARE for making it possible to 100% fund this vehicle which costs more than all 4 of our vehicles PUT TOGETHER!

Next: My hunt next is to get him a communication system where he can TELL us what he wants even if he can't TALK, that will be his voice and encourage him to talk.

Sunday, March 6, 2011

Sydney Ann

IMG_0459vintagewm, originally uploaded by conradzone.

Thursday, February 24, 2011


Yawn! Color, originally uploaded by conradzone.

Here's Sydney Ann at 5 days old.

Wednesday, February 23, 2011

Announcing Sydney Ann

Sydney Ann joined us Feb 17th after a speedy labor born in the water into her mother's arms at 10:29 am a mere 2 hours after labor began. She's such a joy and adds a little pink to all the blue. She was 9 lbs and 22 1/2 inches.

Little sister

Here's a video of Tommy singing to his little sister :).

Little sister

Thursday, February 17, 2011

Sunday, February 13, 2011

Tommy pulling a game up for William

William Reading my Email

William Reading my Email, originally uploaded by conradzone.

Saturday, February 12, 2011

Thursday, February 10, 2011

Thanks Nana for our Cards!

Thanks Nana for our Cards!, originally uploaded by conradzone.

Thank you Nana Papa for the Card

The boys got Valentines day cards today from Nana and Papa, and they each loved them.

Thursday, January 20, 2011

Natasha did a wonderful Job

lydia1, originally uploaded by natashahance.

Natasha Hance of NHance Photography, did a wonderful job taking some maternity shots of me so I could capture this pregnancy. They came out just stunning. You should be able to click on this photo to see a few more.

Thursday, January 13, 2011

Ice cream for daddy's birthday.


10 years ago today I met this wonderful guy celebrating his birthday at a bar and it changed my life. I'm so glad you introduced yourself to me and asked me to dance. You changed my life permanently for the better. Happy Birthday I love you! I'm so glad to have you as my dance partner through this dance called life. Sorry sometimes I try to lead. You are a much better lead that me, and I've always had two left feet.

Wednesday, January 12, 2011

Tuesday, January 11, 2011

William happy to be driving the car while parked in the drive way.

Baby #4

Where to even begin. This pregnancy has flow by, I've been so wrapped up in dealing with William and Micah's health issues I haven't had much chance to focus on this baby, but the stronger and stronger contractions that I keep getting as delivery draws nearer and nearer and reminding me that this baby will be here soon. The pregnancy has been a breeze, the time has flown by, my blood pressure had been normal, all tests have been normal, and visits with the midwife a breeze too, and movement has been often, and often visible from across the room. I wish I'd have has some sort of baby shower to celebrate this baby, but I'm thinking maybe it was better to save that opportunity for when baby is here and everyone can celebrate his or her safe arrival. I'm 35 weeks now and that gives me roughly 2-8 more weeks to go.

I'm still wondering how things will play out for the birth, will we have the right person to take care of William when it's time. Or also the right person for Micah and Tommy?

Will I be able to get Pictures done before baby arrives.

Then I recently got my baby blankets, and clothes down from the attic to realize that I have one bin that is 0-12 months clothes left, back at the beginning of 2010 I cleaned house had a garage sale and donated almost all of my baby clothes. I have one coming home outfit for a boy and one for a girl, and then we will see how it goes.

I'm nervous and excited, excited to hold a small tiny creature again, my boys are all so big, and nervous to learn where this new baby will fit in our family. I'm sure our hearts will grow, and there will be new room created. I'm hoping this transition will be smoother than the last one, when Micah and William joined. I'm praying for peace, and comfort, and a healthy baby.

I've found myself craving some of the things I enjoyed at the end of my last pregnancy, a Whole Foods Vitamin C water I remember fondly drinking it during my labor slightly frozen. I'm also praying my husband is able to get his business trip safely completed while baby stays tucked inside.

Neurology, Sickness

Willam's neurologist called to update us on the re-read of the MRI that was done at Children's Dallas. The Neurological damage that was seen after his birth is still there, and it's still significant, both sides of his brain, and also his cerebellum.

From Wikipedia:
The cerebellum (Latin for little brain) is a region of the brain that plays an important role in motor control. It is also involved in some cognitive functions such as attention and language, and probably in some emotional functions such as regulating fear and pleasure responses.[1] Its movement-related functions are the most clearly understood, however. The cerebellum does not initiate movement, but it contributes to coordination, precision, and accurate timing. It receives input from sensory systems and from other parts of the brain and spinal cord, and integrates these inputs to fine tune motor activity.[2] Because of this fine-tuning function, damage to the cerebellum does not cause paralysis, but instead produces disorders in fine movement, equilibrium, posture, and motor learning.[2]

She also continued to mention how she couldn't support us not starting him on seizure medication and suggested that we find a new neurologist that would support us in this regard.

I called our pediatrician about this and she also suggested another neurologist that could possibly support us in pursuing our options regarding seizure treatment. We are working with our pediatrician, on improving his nutrition to raise the seizure threshold. We seem to have some success so far, we've gone from seizures once a week in November, and beginning of December to spreading out in December to once every two weeks at the end of December and hopefully back to once a month in January.

I have to admit it's hard looking at him at this point at 2 almost 3 and seeing exactly what he can't do, how he can't participate like his brothers, like his twin. With the constant reminder every day that Micah talks to us, and tells us stories, but William is only able to grunt and smile. But at the same time it's encouraging to see his likes and dislikes and how he communicates those to us. He still tries so hard, you can tell when he wants up by how he hold his hands and tries to lift his head, or if his unhappy with his brothers for how they were too rough, or how he smiles at them when they talk so sweet to him.

Then what makes it even harder is to see him sick, laying down no desire to move, like the spark is gone from his eyes. Struggling for a cough, struggling to breath, struggling to move a single muscle in his body. What's a simple cold for you or I (medina) virus in this case, similar to the flu, or RSV, has wiped him out for 2-3+ weeks. Oxygen Saturation low, coughing fits at night, breathing treatments, sleep schedule all messed up, sleeping till noon every day, unable to eat anything, trouble with liquids even via feeding tube, too much and he's vomiting mucous, too little and he's feverish and dehydrated. A big reminder of why we have to be careful of exposure to sick people. He very easily could have been in the hospital with this one, if it wasn't for the wonderful night nurses giving him fluids, keeping him hydrated, and giving breathing treatments, suctioning, and CPT. For the last two weeks every 3-4 hours at night. We caught it early enough and started the breathing treatments. Also at the beginning the nurses were faithful to show up. So he didn't miss breathing treatments at night.

Mother of a "Special" Child

When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all

I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough

The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you

This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak

So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry

To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday

But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good

But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too

A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.

God Choose a mother for a "Special" child

Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."