Monday, November 30, 2009
Sunday, November 29, 2009
Saturday, November 28, 2009
Friday, November 27, 2009
Wednesday, November 25, 2009
Tuesday, November 24, 2009
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
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
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
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
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
Sunday, November 15, 2009
Saturday, November 14, 2009
Thursday, November 12, 2009
Friday, November 6, 2009
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
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
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.
Monday, November 2, 2009
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
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!