Monday, November 30, 2009

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!

Sunday, November 29, 2009

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...

Saturday, November 28, 2009

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...






Friday, November 27, 2009

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!!!!

Wednesday, November 25, 2009

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!

Tuesday, November 24, 2009

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

My new favorite editing tool...

















So my new favorite editing tool is Tintii. I have been seeing this color popping on some other blogs and websites but couldn't figure out how they did it. So I googled some things and found Tintii, a color popping program that has a free version that I downloaded. It was a bit confusing at first but I found someone had posted a blog entry about how to do the editing and once I read it and played with it, I figured it out. I LOVE this program! Black and White pics are my favorite but sometimes one just calls for something extra. I loaded some up and took them down to Walmart and printed them out to put up on my b and w wall in the hallway. FREAKING AWESOME! On the last picture, you can see just how much Faith favors Carl. I am totally addicted now! LOL~!




Monday, November 23, 2009

Updates on the casting...

Faith had her first follow up appointment on Thur., at Shriner's. They windowed her casts-meaning they cut squares out of the back of the heals to see if she was having any skin breakdown. She suffered severe pressure wounds during all of her previous casting "experiments". But this time, NO WOUNDS!!! YEAH! Everything looked great! We waited FOREVER to see our dr, but in the end we saw someone else, that we have never met. He said for us to come back in just 2 weeks, for them to cut the entire casts off. If she has healed well and seems to be doing good, then they will try to mold her for new AFO's and she will go back in casts for 2 more weeks while we wait for them to be made. So if all that goes as planned, she will spend a week less in casts than we expected! Which is a good thing. I am still sweating the inpatient rehab thing, they mentioned it again on Thurs. . I guess we will have to wait and see...... Did I mention, I HATE waiting.......
We are starting back to therapy- OT and ST, anyway- today. I know she is getting bored at home so we are trying it today with OT, to see if she can tolerate it. If she does OK, then we will try ST, on Wed. She has been wanted to get up and try walking with me holding her arms. She has been able to do this for a long time, so I let her for a couple of times over the weekend. She didn't seem to be experiencing any pain and she was laughing like crazy!! AND her feet were flat on the floor!

Thursday, November 19, 2009

November 13, 2003

This was my Bamboo's last day on Earth. The first day that she got to go HOME to Heaven. I missed posting about it since we were in the midst of returning home from the hospital but I would be remiss if I didn't spend some time talking about her. My grandmother was this vibrant, youthful, spirited, silly, strong woman. Someone who I aspire to be like, every day! I spent a large part of my life with her and at 16 came to live with her until I got married. She was a teacher by trade and she could remember where a student sat 15 yrs after they left her classroom. I loved her so much.... I miss her so much. Her death came just 7 weeks before Faith came into the world. She had a stroke then an aneurysm not unlike Faith, when she was born. She was in the ICU for 8 days before she died. I slept on the floor of the waiting room at night, 8 months pregnant. Just 11 months before, at Christmas, she had whispered to me that she wanted me to be there when she died. I kept my promise.... I was there when she breathed her last breath and left this world to be with her Saviour. I was the only one of all her family who stayed... all the rest of my family were too busy being irresponsible, they missed out. I got to see her leave and I prayed for her to go in peace. I held her hand and kissed her, goodbye. I was always the closest to my grandmother, closer than anyone else. We shared this special bond that couldn't really be explained. So I write in blue today for her, her favorite color. I think of how close she was to meeting Faith- how maybe they just passed each other coming and going! I wish she could have seen her- but I am at peace. I know she was ready to go and be in Heaven. Bamboo, I had a coke icee in your memory, last night, it sure was good!


Wednesday, November 18, 2009

Cabin Fever...

What day is today? Saturday, Monday, Friday? I am loosing track of time... I haven't left the house since Saturday and I am beginning to have cabin fever. Of course, I am glad that we have some free time but this is ridiculous! We do have an appointment at the hospital, tomorrow, but in a way I am dreading it. I have yet to try to transport her by myself anywhere and I am kind of freaky! She is so hard to move and get in the car with two people doing it.... Maybe I need to find a helper chimp to lift her and get her in her wheelchair!! LOL! I want to get out of the house but I am nervous about the ordeal. I guess we will find out tomorrow, I don't really have a choice. Except maybe getting Carl to help me load her in the car before he goes to work and just driving around for a few hrs before we have to go! Just kiddin'! Last night she had her first vomiting episode since we returned home- I got in there before it was too bad but after she wretched "all" of it out, I thought she was done and moved the bucket. S-P-L-A-T all over her knee immobilizers! It soaked all the way through, too. So we HAD to take them off and she had to go to bed without them. I decided to try washing them although I wasn't sure it would work. But they did come out OK- they got clean anyway, can't say a lot for the smell! When we go to the hospital tomorrow I am going to try to get them to give us another pair. I decided I am going to go buy a box of those cast protectors to avoid this problem, in the future. On the positive side, Faith's new Crocodile gait trainer is in. The delivery guy showed up today to deliver it, although he had to take it back b/c it was missing a certain piece that we ordered. BUT it's here and that is saying A LOT b/c it was just ordered less than 2 wks ago! Remember we waited over 7 months for Faith's wheelchair! This time we used a pharmacy that specializes in equipment (although not pediatric) and they rocked it out! They called last Tues. and said it had been ordered Monday and expected it this week but then approval thru TEFRA would take up to 30 days. I just can't believe that they worked it all out that quickly! AMAZING! I bet they will be getting some business now from our therapy center! It's quite nice and folds up pretty flat. Very modern looking, too. So that's my fascinating life. I will leave you with some sweet photos of Faith and our cat and a beautiful close up of her while we were reading, today... she has her daddy's eyes!

Tuesday, November 17, 2009

What friends are for...


So yesterday, we got a call from hubby's sister, saying that she had some cards from Faith's girl scouts troop. She dropped them off, last night, just before Faith went to bed. All the little girls and her troop leader had handmade these beautiful cards with confetti and horse stickers and ladybugs all over them. Each one had each girl's unique personality displayed with touching messages of healing for Faith. Carl and I had tears in our eyes as we read each one to Faith. They also had cut out pictures of horses and glued them to construction paper. They were all colors and designs and so beautiful! They also included a Beanie Baby Horse for her. The biggest thing to me was that someone remembered that Faith loved horses and had her room done in ladybugs. I don't really remember talking about that except for one comment to some of the girls that Faith was going to have a horse birthday party! Faith was so excited to take each card out of the bag and examine each piece. We lined them up on our kitchen bar so that we can all be reminded that Faith has 9 new friends who care for her! That means more to me than a million dollars! We are so humbled by the kindness of adults and children alike. I still think about how nervous I was about taking her to girl scouts and worrying that she wouldn't be accepted. All my fears were unfounded and she has become a thriving member of a group of girls who love her and hopefully are learning something from her. I have learned a valuable lesson, myself, about children that I didn't know.

Sunday, November 15, 2009

My baby loves "babies"




Faith has come so far beyond what so many "professionals" said she would....
They said she would be "a vegetable" that she wouldn't walk, talk, eat. She has, to an extent, proved them wrong on all fronts. She is far from their definitions. She is a vibrant, brilliant, endearing, beautiful, loving little girl. I am happy with that!
Now she has had lots of favorite toys, in her life...rattles, spoons, blankets, books. But her new LOVE is "babies". She is an only child who does see babies, but not on an everyday basis. Recently, she has become this little MOMMA who loves to hold "babies" of all sorts...bears, baby dolls, kitties and the like. She will hold them, in just the right way, rock them back and forth and she has this particular way of holding them just like she is supposed to do and it has to be just right!! It really strikes me as funny b/c I have no idea where she gets it from. She knows to put the baby bottles at their mouths and that you should pat them on the back! It just cracks me up. So today, I saw her holding her bear, the Build a Bear that she got to make at Shriner's, and she was treating it just like a real baby! Don't get me wrong, it's fabulous! But I can't figure where she got it from. SO cute, she is!!!!! Maybe she has a future as a nanny or something having to do with babies!

Saturday, November 14, 2009

Gastrocs Release....




So we are finally home and trying to find a new routine with life in double casts and knee immobilizers up to "our" armpits! Faith has done really well since her surgery. We had a FANTASTIC anesthesiologist, who worked really hard to find a concoction that would keep her from her prolific vomiting, after surgery. It was an astounding success! Her surgery, itself, went great. They were able to lengthen all the muscles that they had planned except for one on her right leg. But it was cool b/c they cut this muscle and actually attached it to another one, close by. It wasn't something we had discussed beforehand, I didn't even know they could do that! Forgive my stupidity, I just never even considered that. How you can take one muscle that is extraordinarily tight and cut it, then stick it to another muscle that does something completely different and then they both work!!!????!!!>>> CRAZY.......
We got to see copies of her xrays of both feet before and after surgery. It was AMAZING! The before shots showed TONS of misaligned bones in her foot and ankle areas. Some were going in completely different directions, some were smashed together, some were almost upside down. The after surgery xrays were astounding! They weren't perfect BUT they were about 85% better! Most of the bones were much closer to the right positions and all were better aligned! I don't know tons about the bones in the foot but even I could clearly see a dramatic difference! It is so exciting and I am so hopeful that this will help her walk~!
So she got out earlier than expected and I will have to post more about our experience while at the hospital. (Don't worry, it was remarkably great!~) Now we just have to learn how to carry this kid (she's basically like a long, flat piece of wood that is too long to fit through a doorway! LOL!) We did get our hands on a reclining wheelchair with elevating leg rests after MUCH work and DAYS of tracking! It's way too big but we made it work. So now I REALLY NEED A MINIVAN or wait..... a 15 passenger van. ARRRRGGGGGG.... I am soooooo embarrassed that I am admitting that!!!! LOL~!

Thursday, November 12, 2009

HOME



We just got home tonight from the hospital! Faith had her gastrocs release surgery on Tues., later than we expected but none the less. She did great and is making a speedy recovery. I will post more when I get some energy back. I slept very little over the last 4 days but I would never regret it. She has knee high casts with knee immobilizers from her ankle to her hip. So not easy carrying for us. But she has tolerated everything well and did not have any nausea or vomiting! WHOOOO HOOO! We may be looking at inpatient rehab when she gets out of casts but I am praying against that. Please continue to pray for her and a speedy recovery.

Friday, November 6, 2009

YEAH!!!!

I am so happy to report that we found out today, that we got into the Ronald McDonald house! We have been so busy, this week and I was so worried about what we would do, if we didn't get in. But I got the call and at the very least, we have it for 4 days! Faith has been sneezing a little for a couple of days and I really pray that it is just the leaf allergies and not a cold or something worse. We have made so many plans, getting sick now would be a disaster! Poor Carl is dragging so bad after all the work he's been doing. He has been going in at 4 am and some nights not getting off til 7pm. He has to have 70 hrs in by Sun and he is trying to get them all in so he can be off on Sunday to help pack. I know it's hard for him with going to school and all, too, but I told him that he should be thankful that he has a job. So many people would kill to work 70 hrs or any hrs, at all! So he should be really happy when he gets his paycheck in a few weeks!~

I am still looking for entries into my Miracle Veteran contest.... One more addition, we have wonderful Karen , who gives us a look at the miracle of all of her children and her son Timothy, who survived Leukemia.

Please keep us in your prayers!

Thursday, November 5, 2009

Miracle veterans.... who are we?

After much begging, pleading and bribing we finally have some miracle veterans out there responding...

First off, we have Elizabeth Ann's mom, who left a touching piece on my comment section about Elizabeth's first moments of life.

Next we have Miss Burb's post about her time in the hospital with her new baby boy.

Then we have the lovely Katy , Charlie's mom, who went against the grain and gave us a wonderful list of some of dear Charlie's many accomplishments, in his short life.

After that we have sweet Jenn, Jude's mom who tells us about how both her wonderful kids are miracles in their own rights.

And one more, well timed entry by Keri , who gives us a heartfelt list of many miracles she has seen in Logan's life after so many difficult experiences.

Then we have Amber's beautiful story about Jacob's preparation for surgery and a mother's unconditional love.

I don't think I missed anyone...

I would love to have some more entries... still waiting....

We are in the last few days til Faith's surgery, five days. Please keep us in your prayers.

Wednesday, November 4, 2009

Surgery preparedness....

As our surgery date draws near, I am constantly stiffling panic, fear, worry, irrational thoughts and more fears! This is going to be Faith's 5th surgery, her first four in her first 3+ yrs of life. So we have been fortunate that we have had 2 good yrs w/o any. Each surgery she has had, I suffer from severe anxiety and overprotectiveness. I have fought many an ugly battle with nurses, doctors, nurse managers and even heads of departments! I have repacked Faith's hospital bag twice in the last two days. I get worried about the most irrational things- nurses who want to dose all of her regular meds, techs who can't get veins, doctors performing surgery on the wrong body part... then the really crazy stuff.... leaving a medicine at home, forgetting a vital nessessity, our house burning down while we are gone, someone losing our dog at the kennel.



I just can't help myself. Of course, I worry about the big things! Something going wrong, her having a bad reaction to some medicine, a problem with her neurological status. I know that GOD tells us not to worry... but this is my struggle. I know it stems from our lack of control in all things Faith, but she is so precious.

My main way of dealing with this is overpreparing! I have 2 running lists going, right now. I have about half the things crossed off but I keep adding things to them! At least we are only an hour and a half away, this time. So if we need something bad enough, we can go back. The other thing I am anxious about is that only one parent can stay with Faith. So we are trying for the Ronald McDonald house but won't know until Friday afternoon. The reason I am worried about that is b/c with my diabetes, I often suffer with low blood sugar in the nights. Carl is always there to help me and get my sugar back up. So I will be there with her w/o Carl. I am going to try to keep my sugars up before bed. Better high than low those nights, I guess. We are so busy the rest of the week I am hoping that it will keep my mind off things, as much as possible.


Monday, November 2, 2009

My little house on the prairie...














video


So, finally, I am posting some of Faith's Halloween...Just look at that little face! Isn't she darlin'! We didn't go trick or treating, this year, it was a miserable night, rained almost the whole day. We did make it to Grandpa's and she got to play with her new favorite thing.... CANDY! She had so much fun! It was fun for us just to see her shuffling around in her little house outfit! She got a real kick out of it, too! She only got a few pieces of the good stuff, but they were mostly suckers, which is good. Her aunt Donna got her a whole bag of ring pops, which I am taking to the hospital with us. Please keep us in your prayers over the next week or so. I am getting terribly anxious, as I always do, before her surgeries. I clean like a maniac, organize everything, repack our bags 100 times. We are praying for a spot at the Ronald McDonald house but won't know until Friday afternoon. ARGGGGG! Of course, hubby's work decided to require mandatory overtime to the tune of 70 hrs, this week! School, work, surgery! ARGGGGGG times two! I am just trying to get through this week. Give me strength, LORD!


Remember to pause the music at the bottom of my blog to hear her talking. And forgive Hubby, he is raging in the background about Clemson (his arch nemesis)!



DON'T FORGET ABOUT MY MIRACLE VETERAN CONTEST! I WOULD LOVE TO READ SOME INSPIRATIONAL STORIES!

Sunday, November 1, 2009

Ok, Ok, Ok.... Hello anybody want to win a contest?




Ok everyone! I have had very little response to my contest. So thanks to Dr. Boucher, I am going to try some some other tactics! First off, I am extending the deadline, I am going to extend it to Nov. 8. To refresh everyone's memory, I am having a contest for all of you MIRACLE VETERANS out there.






My hope and goal was to hear some inspiring stories from my bloggy friends. To remind you all, I am looking for some stories about your children and you that have reminded you of the fragility of life and how precious our children are. It doesn't have to be "THE" story about what happened to your child. It can be a small story that really spoke to you or was a defining moment.

For me, it was when Faith did her first sign. She was exactly 4 and a half. We had tried everything we could think of to get her to talk or sign or use a.com. devices. Nothing worked! So I tried to accept the idea. It was hard for a while (a long while) but slowly we did. Then one day we were waiting for therapy in the hall outside and a baby came by with her mother. I said "baby" and signed the word for it, too. All of a sudden she did it too! And so began our signing saga! She has learned about 50 signs in the last 15 months. Her latest include pumpkin, witch and a very modified version of Happy Halloween. I cannot tell you the joy we experienced when she began to sign! No words can describe it!


So, what's your story! Come on, you know you have one or a hundred! Just post one on your blog and then come back and leave a comment. I will read them and choose a winner, as randomly as possible! LOL!