A busy week..And Contest Winner...

After starting back to some of our therapies, last week, I am forced back into full swing! This week we start off with OT- Monday, Phyc. Eval for Life time eligibility at DDSN-Tues., Speech-Wed., Shriner's (casts off for the first time) as well as Early Intervention Christmas party-Thur. and SO FAR free day on Fri.! Mind you most of these places are at least 30 min. away some over an hour! We took Faith's splints off, the other night, to have a closer look at her legs and heels. She was incredibly stiff in her knees, I can't imagine why! But she did allow me to bend her knees a few times. She has developed a small red spot on her right heel, the worst offender for pressure wounds. So, I removed the ace bandage and fill in piece, covering her heel. It's still there today, but doesn't seem any worse. If we can just make it to Thurs.....I am very curious to see her legs and feet when they get this set of casts off. We haven't seen her legs since the surgery and curiosity is getting the better of me. I want to see how bad the incisions are and what kind of scarring she is going to have. I know her little feet were messed up b/c of all the spastic muscles but they were perfectly sweet and adorable. Now, I know they are going to be all scarred up, forever. I know it's silly but I can't forget about it. All of her other scars are covered by her hair on her head or her shirt but these will be quite obvious. Oh well, if she can get to walking, that's all that matters. She is perfect, no matter the scars....

One more thought, only a mother of a special child will understand me when I say I just love this picture of her with that little bit of drool on her chin. I know it's weird but it's Faith!

Also, I know I have been slack about announcing a winner in the Miracle Veteran contest... Forgive me but the surgery really got me spinning... Anyway, the WINNER is...

AMBER, from Tales of the Baker Bunch! Amber, email me your mailing address and I will get your sign out to you, asap!

What a difference a year makes...

A year ago, Faith learned about Christmas trees for the first time...or at least she learned to identify one. A year ago, Faith new nothing of pumpkins or turkeys or holidays. For that matter, she wasn't trying to talk or playing with baby dolls appropriately. This year, she learned the sign for pumpkin, learned to say Turkey and tonight...hung her first ornaments on the Christmas tree....

MY BABY GIRL!

Sweeter sights have rarely been seen. She saw me hanging them on the tree and she wanted to do it. So I got out her little tree and we hung ornaments, together. Of course, most of the ornaments all ended up on the bottom branches and needed to be rehung but who's counting???? I got a few pics of her, starry eyed at the lights, as she got to participate in her first tree trimming! It reminds me to be so Thankful for my precious daughter. At the wonder of childhood and how she manages to prove everyone wrong! She was so happy and excited at this new experience!

This is ALL I need for Christmas, I am content and thrilled. If this is our life....That's OK! I am so lucky to be able to share these treasured moments with my daughter, things that were not always so easy to imagine in our future. I need nothing else in this life. Things that I wished and hoped for before she was born, they are not always realistic. But I have learned that many of those things don't matter so much, it's the little things that GOD shows me, everyday.

THAT LITTLE THING CALLED FAITH...

More pictures of our accessible house...

OK, if you are reading, you need to start at the previous post.....

The house just before it was finished....

Lever door handles...

Extra wide door ways and NO hallways...


Roll up sink instead of cabinets...

Our house....Courtesy of Regal Homes

So, Lovely Katy, over at Bird On The Street, asked me to post about our house and it's handicap access design.... We started the process 3 yrs ago. Our old house was Carl's childhood home with virtually no way to adapt it: doors were 28" in most of the rooms and all the rooms ran down a very long hallway, the bath was so small that two people could hardly fit in it and her playroom was down steps. We knew, as Faith got bigger, we were going to need a new house. We started scoping out different builders but quickly came up to REGAL HOMES. They build lots of houses in our area and quite a few subdivisions.

We decided to go with them if they could make some adaptations and accommodations for Faith. We looked at dozens of houses and plans, finally choosing the Ellington design. A four bedroom with open living room, kitchen and dining room. We knew we needed to get rid of the hall way to the extra bedrooms and one bedroom was going to be a playroom. So we sat down with Bob and he laid out a plan for a single level house with 3 bedrooms and a playroom with no hallways and all totally handicap accessible. I cannot say enough good things about Regal, as they made changes for us that they had never done all for no additional cost to us!!!!

They put ramps into every exterior door, push lever handles one every door, each door/way is at least 36", handicap accessible shower instead of a tub with raised toilet and roll up sink instead of cabinets. They also added four extra feet across in Faith's bedroom and a huge walk in closet with extra wide door, as well as a patio door with ramp out of her room. They were so kind to us, we are so thankful! It has made our lives so much easier especially as she has gotten bigger and more difficult to carry. She can get around the entire house, open any door (gotta be careful!) and hop around wherever she wants. After we signed the paperwork to start the house, it was finished in just 3 short months! I will say we spent A LOT of time deciding on features and layout of houses - months! And we had a very caring and understanding builder who did whatever he could to help make our house perfect for us. I also had to include a pic of my fav. piece of equipment... VIDEO MONITOR!!!!

BEYOND THANKFUL AND BLESSED...

As Thanksgiving nears, I am reminded of all the things I am so blessed to have been given.....

1. I am so incredibly Thankful for Faith- Faith, my daughter and Faith, the idea that God has given us...

2. I am so thankful for my husband-Father of the best girl in the world and my best friend.....

3.I am so thankful for strength- Never thought I had much of it, until I had to walk down this scary road....

4. I am so thankful for GOOD doctors- not all are, but the ones who are make up for it all. I am also thankful for the staff at Greenville, SC Shriner's hospital......

5. I am so thankful for the family and friends who have prayed for us, given us helping hands and loved us, despite the fact that we can not always do our parts during the holidays....

6. I am so thankful for simple childhood innocence...I live in this constant state and there is NOTHING better. Just sheer happiness over playing with pots and pans and being happy about it....

7. I am so thankful for all the wonderful families I have met, during our travel down this uncertain, bumpy road. I have been inspired, grateful, scared and sympathetic when I meet other families and it keeps me thankful for what we have to deal with.

8. I am so thankful for our home.... designed for Faith's future by Regal Homes, fully handicap accessible and those features all done for free! I only just recently became EXTREMELY thankful for these features- like ramps and wide doorways!!!

9. I am so thankful for the life lessons that I have been taught...I never thought I would say that...Thankfulness for pain...but it's true...

10. I am so thankful for the blessing of FAITH, she has been my biggest joy, lesson, pride, humility, fear, patience, peace........ I can honestly say, I have never been so blessed as the day she came into this world. Never knew how lonely I was without her, how fulfilled I was with her! I never knew there was a mom lurking down deep and she has taught me so much....

I AM SO THANKFUL AND SO BLESSED......

HAPPY THANKSGIVING TO YOU ALL!

Authentic Me...

Carla, over at So this is Holland, was so kind to list me as an Authentic Mom... So I am supposed to list five things that make me feel authentic! Here we go..

1. I KNOW that I put my daughter first. Unlike so many of our own parents and previous generations, I value my daughter and the honor I have to raise her. I know I can rest easy, when I lay down at night, doing my best for her.

2. Seeing that I inspire our friends and family and I hope help them to see the fragility of life and how we should not waste one minute we have with our children.

3. I feel this is MY calling in life... I used to think it was something fantastic and newsworthy...but now I am honored and satisfied with being the best mom to the best girl in my world.

4. I have walked down a path I never expected or wanted to but have SURVIVED! I can now say I know more about many medical issues than alot of medical professionals! I am an EXPERT on CP, seizures, communication problems and adapting (in life and equipment)!

5. I am truly happy to be home with my daughter.... THRILLED.... and I am so thankful that God has blessed me with compassion, love, committment, dilligence and patience with her. I see parents, every day, who can't stand to spend their days with their children.

Now I am supposed to pass this TAG along to five other authentic moms....
LOVE THESE WONDERFUL LADIES...THEY GIVE SUCH WONDERFUL SNAPSHOTS OF DIFFERENT EXPERIENCES IN THEIR LIVES...
1. Amy- Eli's mom

2.Jenn- Jude's mom

3.Amber- Jacob and Grace's mom

4.Beverly- Noah's mom

5.Karen-Faith's mom over at On Having Faith