Hi everyone out there in bloggie land. Faith and I are still alive.......well...for the most part. We have had a really rough go of things for the last few months and my blog was one of the first things to fall to the wayside. Things have not been easy for us and I am still dealing with a LOT of bad stuff. These last few days I have finally begun to try to dig myself out and try to get my life back. Don't know how to do it just yet but I am praying to GOD to give me strength and wisdom to do the right things. Faith is doing ok, she is talking more and more. Last two weeks she learned to say NO and Uh Oh! It's a really big deal and of course, everything you ask her is ......"Noooooooo"! It's so cute! She has been going thru a big growth spurt and she is looking more and more like a young girl instead of a little girl. Losing that baby face. We had an epilepsy center appointment last week and her reports were all good and they said as long as she stayed seizure free like she has been she could go six months before our next trip! She also had another VCUG on her kidneys that revealed that she still has the grade two reflux...don't know what our dr will decide to do but there is a possibility of surgery to repair it. We will go at the end of the month to hear about what he wants to do. Please continue to keep us in your prayers.....we really need it. I am going to try to get back to blogging to relieve a little pressure.
Monday, October 4, 2010
Monday, August 9, 2010
To all my dear friends out there...we are still alive! I am still dealing with some deeply personal challenges that are consuming a great deal of my time. I wish I could talk more freely but it is still very raw right now. I miss getting to read every one's blogs and continue to pray for all my dear friends and your children. I am sad to admit that I missed marking the anniversary of my blog, last month but it's just a date after all. Faith is doing OK, she is still full of smiles and joy every day. She is my bright light that keeps me going...Please continue to pray for me...strength and wisdom and God's protection.
Posted by Candace at 10:42 PM
Thursday, July 22, 2010
To all my friends out in blog land. Please don't forget to pray for our family. I am still here but my heart has not been able to pound out the words to fill a page. I am still struggling and am needing all the sincere prayers that I can get. Pray for wisdom and strength and God's merciful guidance and comfort. Thank you to my dear friends who have reached out to me with words of encouragement, you don't know how much it means to know that friends are out there.
Posted by Candace at 3:23 PM
Sunday, July 11, 2010
Saturday, July 3, 2010
Tonight was our town's Independence Day Celebration. All the churches get out and set up tents and provide games, inflatables, food, drinks, snow cones, face painting...all for free! The street fills up around 5 or 6 with children, pets, families, strollers and everyone brings chairs to watch the fireworks at dark.
Perfect strangers came up to talk to her and encourage her. This is a friend of ours who is mostly deaf who adores Faith and was kind enough to decorate Faith's cheek with...
"THE BEST TEAM IN THE COUNTRY'S" logo!
( Gamecocks Rule...that's for you, Carl!)
It is hard to explain to people who aren't from here or people who don't have special needs kids how isolated it can make you feel when you have a sick child. But this community.....
has welcomed her into it's fold.
SO CUTE! She made Faith two bead bracelets and decorated her wheelchair with carefully chosen stickers.
This is my favorite shot of the evening. These girls LOVE her...really LOVE is not the word! When they saw her walking they were yelling and cheering and telling everyone! We saw lots of people we knew who had never seen her walk who were awestruck. We met about 15 new people from surrounding communities who had to come meet Faith and she charmed them all, blowing kisses, calling out to them as they passed by. When she got overheated and we needed a place to let her rest and get cooled down...women from the Methodist church gave up their spots in front of a fan to let her recover.
Her stamina was INCREDIBLE ....the longest she had ever walked. I would say maybe an hour! Up and down the street...up and down...waiving at her fans and marching along watching all the people. When she saw someone she knew she would say..."Awwwww" and point and head straight that way. Men, women, children, dogs all were fair game.
See what I mean...this lady we did not even know brought her puppy for Faith to see and the first thing she did was reach out and hug and kiss the puppy.
She was so happy and I could never begin to describe how my heart was swollen with PRIDE!
She didn't make it to the fireworks, Carl had to take her home but I got a mom's night out and stayed with my sister to watch them. They were beautiful but as I watched the evening grow dark and the lights grow dim...fireworks starting.... I turned to look at all the people lying in the grass, on the street....all gazing at the sky...I was thinking...MAN, forget the fireworks! Look at these amazing people! Look how they have accepted my daughter! What an amazing community we are so lucky to live in! Although it is TINY...it is full of heart and kindness! I have never been one to have attention drawn towards me but I tell you I walked straight down the middle of the street like the Queen of England, proud! It's so hard to explain without being here, being there to witness this tiny girl "OWNING" her community! I just don't have the words to describe it. Tears of happiness to know that she has a HOME in our town, she belongs, she is accepted, she is LOVED, she is encouraged, she is cherished. "
That is the what INDEPENDENCE means to me!
HAPPY INDEPENDENCE DAY, Y'ALL!
Friday, July 2, 2010
I figure if I can get her to be able to identify (by pointing) the first three letters of the alphabet by Christmas that's a reasonable goal. I have been learning a lot myself about time management. I have always been pretty good at it, actually prided myself on it as a manager for years! But this is a different ballgame...therapy, doctors, driving, researching and preparing lessons, caring for her, getting her fed, dressed and medicated, cleaning, making dinner, record keeping. Shew...is that all? I have learned that we will not be able to do our school year following a typical school year schedule there are just too many commitments (for Faith) that we can't give up. So I have learned to get up early and spend an hour or two first thing, then off to therapy then book it home and spend as much time as we can before dinner. The majority of Faith's education is still daily living and self help so we get to count therapy and also when we work on standing, eating and dressing...all that counts for parts of our school day.
So this is really just a recap of things we have both been learning in the last month. My real big issue is in SC we have to teach writing. Now Faith is just barely where she can hold a large crayon and scribble some marks on a page, so that is giving me a real fit. I know we have to start with the basics like lines and circles but she isn't even near that. I feel very unprepared...wait unsure how to do this right. I need to talk to our Association leader about what counts to see if working on her Ipad may count or what I need to do.
Faith seems to be enjoying most everything we do, mostly I think she thrives on focused attention by me...always has. She has passed 160 books in our first month and we are working on compiling a review of our A words in a "A book" with pages she colors of each of her topics.
Thursday, July 1, 2010
She only did it once but she kept trying....she just kept losing her balance and falling backwards. Once she fell backwards and missed the coffee table by about an inch and after a few tears she was right back up trying again. As of about 2pm today she can now get to kneel about 50% of the time without holding on!
My GIRL, I am so proud of you. Words are not enough to explain how much joy and surprise you bring to my heart! I love you the way you are but I love you more for your determination and persistence!
Wednesday, June 30, 2010
I know this doesn't do it for everyone, but I was so excited! This place is a wonderland of boxes of all kinds of therapy and educational equipment and materials. Really they don't even know what they have or what it's for. I had two HUGE deals I found today...
We have been using these recorders in therapy with Faith for a while. They are little handheld recordable switches that fit perfectly in a child's hand. Our therapist suggested investing in one or two to use at home. At around $13 a piece, not bad for a primitive AAC device but I hadn't forked over the money for one. So while scrounging around in random boxes, today, I found one lying right in the bottom of the box! I was on cloud nine, so I asked a few employees if they had seen anymore and they said they had seen a few boxes of them but couldn't remember where. So we dug around and came up with 7! SCORE! I asked how much and the cashier says "I'll give them to you for $1 each." SOLD! Faith has been hauling them around all afternoon, I programmed one to say "Hi" and whenever someone would come thru the door at therapy she would press that button! She was so proud of herself.
My other cool find was this adapted walking sheep! We use adapted electronic toys with switches a lot with Faith and over the last few weeks her therapist loaned us a bubble machine with a small switch and a delayed response device. Got this little sheep that was already rigged to be plugged into a switch for $5! I had just brought home two books about sheep so we worked them together this evening while we read.
Found a few other steals...a bunch of Crayola washable markers in different color combinations for a $1 a pack, a 25# box of white sand for her sensory table- $5, a little plain apron to decorate while we work on letter A stuff-$1 and a decorate yourself pencil box-$1. I also saw a platform swing for $40, which I am told is a pretty sweet deal (soooo tempted) and they said they had a bunch of those canopy/bag swings at their other store for practically nothing!
I get a BIG rush finding good deals, so I walked around all day with a big smile on my face. I am so tempted to go back later this week when their new truck comes in. I think Carl would strangle me, though!
Tuesday, June 29, 2010
The couple showed the various equipment and tools used in bee keeping and had some of the kids model the protective gear. They also brought a small hive to show, Faith was particularly interested in the bees, themselves. She liked the buzzing noise they made and sat very still listening. While we were there we met a little boy who was in self contained class at the local elementary school. He was very shy but eventually warmed up to Faith because she kept trying to get his attention going...."Heh....Heh...Heh!" and waving her hand at him. It was so cute! My little social butterfly!
On our way out we checked out some more books...she's now up to 140 books for the month of June! Pretty proud of her....(even if I do all the reading! LOL!) Really I am just kidding...I love reading to her and she is so interested in all books!
Saturday, June 26, 2010
My life is consumed...but I am NOT complaining. It's my responsibility! I am OK with it.
But for Carl it's different. He sees himself as other things besides the dad of a special needs child. He still wants to go do things that we used to do before she was born. Hiking, camping, overnights at the beach, swimming at the lake until late at night.
It's hard for him to NOT be able to go do those things. He is a GOOD sport, believe me, but sometimes I can see him wearing down under the monotony of our days.
Wednesday, June 23, 2010
Faith took a pillow case to color. First they made book marks out of foam stickers and glue...Faith was all about the glue and made a BIG mess all over her wheelchair and lap! I purposely dressed her in clothes that wouldn't be destroyed by dye but wasn't prepared for a glue war. She chose pink and teal to use and we were very conservative with the colors. Some of the other kids made a HUGE mess that dripped down onto the floor where the plastic had been moved under the table by all the kid feet. I felt so bad for the poor librarian. When we got home I put out the pillow case on the back porch to dry and it was totally dry in one hour! That's how hot it is here! Faith dragged her artwork all over the house for the rest of the night, she was so proud of it. This Thursday a bee keeper is bringing some of his bees and doing a presentation. Hey, I can't complain about the library doing some of my homeschooling work for me, can I?
Monday, June 21, 2010
Monday, June 14, 2010
Here are some of my new favorite gadgets that we can't live without, here in our house. Don't know how we ever lived without them. This was my greatest new find at the Education Shack that I talked about a few weeks ago. An activity table for water, sand, beans and the like. I always wished for something like this for Faith but they are ridiculously expensive! Found this, last Saturday, for.... $20, people! I was soooo stoked! She has been spending hours playing at this thing. It is the perfect height for her to stand on her knees and she will stay there forever. We have been putting little people animals in there and when she picks them up we say what they are. This is her favorite new toy and it's so cute to see her go into her playroom and stand there going "peeeeeeeese" for me to bring it into the kitchen and put water in it. Freakin' darling! I looked it up on the computer and the cheapest place I found it was $80! Score!
This last one is the wonderful gift from our new friends, T and his momma. (Don't ya love our cat, thinkin' she can get a ride?) This is called a Kaye wagon walker and it is the apple of Faith's eye! I know it's as old as the hills but it's in perfect shape. She had been using one of those baby push walkers to get around at home but it was way too small for her. This bad boy is made for bigger kids and adjusts! The family who gave it to us had replaced the front wheels with casters for easier turning and when we got it we moved the hand bar back because she was getting stuck in the middle. I have had my toes run over so many times, I think they are all broken! She loves the basket in the front and gives all her precious belongings...babies, books, hello kitties, bottles even her baby cousin the other night...rides everyday!
It all started with lunch, last week with Faith's PT. We had sandwiches that came with a pickle spear. I didn't have anything for Faith to eat so I offered her the spear, just to see what she would do. SHE LOVED IT! She ate both mine and her PT's! So this weekend I went out and got her own jar of whole baby pickles, thinking she could hold them easier. She has eaten pickles every night since! It cracks me up because I HATE pickles...hate them...hate the smell...everything about them! BUT she loves them! Tonight she had three, biting them all the way to the end. She isn't swallowing the pickle itself, she spits it out but she is swallowing juice. I have seen her swallowing. It is such a big step in the right direction...chewing and biting....things I never thought I would see her do. It seems like she responds better to things with very strong flavors...spicy foods, pickles, peppery foods, sour candies. Stuff I could never eat until I was an adult. Some of her therapists and specialists who have treated her said that kids like Faith often do better with strong tasting foods...something about it triggering a bigger reaction or something. Who knows...who cares? I think Vlasik needs to star Faith in their next commercial...with a crunch like that she could sell some pickles, I bet!
Saturday, June 12, 2010
I felt a little awkward because I didn't want her to feel like she was doing therapy for Faith when we just came over to spend time with her. I felt like we didn't get to sit down and chat much, but I did have a great time. I asked her about coming up to the house and she said she would love to and didn't mind the long drive. So if I can get my house cleaned up I think we will try to get them up to the house. It was a good time for all of us. I really hope that we can spend some more time with her and her family.
Thursday, June 10, 2010
He was so nice and when he started bringing some of his animals around for the kids to touch, every single time he started right with Faith! The first animal he brought her was a huge iguana that he put right in her lap! She was totally excited! Then he brought her a python...
Then he brought her a HUGE albino python and she tried to grab a big chunk out of the poor snake!
And finally she got to touch an American alligator, which she really liked!
We both had a lot of fun, I could have listened to him speak all day. We got to see about 20 different species of snakes, turtles, alligators and other reptiles. It turns out that this gentleman was retiring from his rescue/business this week, it was one of his last shows. And all these things fell into place that we went to the library at that day at that time and just before the show started, then to meet this man, days before retiring who worked with special needs people for years! It was a perfect day with Faith standing, getting her library card and this wonderful man!
Tuesday, June 8, 2010
Our library is tiny, I mean really tiny, like about 5 rows including the side walls! The librarian was so nice she gave us the paperwork to fill out and once it was done I let Faith hand it to her.
And here we are, Faith's first library card! All grown up, she is! She chose four books about horses, a book about guide dogs and three videos about horses and zoo animals.
While we were checking out when the librarian told us that they were having a reptile exhibit show in the community building, next door. So off we went to check it out...
More on that tomorrow.
Faith was so proud of her books in her little book bag, she carried it out to the car (see, Dr. Boucher, we remember what you said about carrying stuff!). Of course, five books doesn't go very far in this house. I started keeping a log of all the books we read and in 5 days there were thirty books! So we read all of them last night, LOL, I guess we will be visiting pretty often!
Monday, June 7, 2010
Here is the big news! Drum rolls, please...
YES, FOLKS, SHE STOOD UP!
TODAY SHE DID...
with a little assistance in the form of a chair and a therapist to help her keep her balance. BUT, she did all the work! After six and a half years, I had almost resigned that she would never gain that skill, that we would always have to put her in those positions.
But once again, she proved me wrong!
It all started with her OT, trying to introduce some simple yoga moves and for some weird reason she seemed to pick right up on them, attempting about six moves! So she went with it and pulled out her yoga book. Her OT was performing the moves then saying "Faith do it" and she would try. So eventually, it came to a chair and a kneeling position. So D. did it and when it came to Faith's turn she sat on the chair to keep it upright and low and behold...
SHE DID IT, but she kept going into a stand!
(These pics are the actual first time standing for Faith, some aren't so good but I had to show you all anyway!)
Needless to say, we danced, we screamed, we cried, we acted like a bunch of fools as we celebrated a HUGE milestone that was a LONG time coming!
So, then she decided to get smart with us and attempt it using the tripod leg!
Little Miss Smarty Pants did it, with D. supporting her!
Today was a wonderful day for many reasons besides this amazing new skill but it would take me all night to write about it! Another post, another day.
Upon arrival at home, after a long day out, she went scooting over to her little wagon walker and I saw her trying to lift her leg up to a kneel position. She got to it a few times but both times she lost her balance and fell over but she wasn't about to stop! So she came walking on her knees over to me and lifted her leg, I slowly put out one finger to offer her some support and she reached out...
took my finger and STOOD UP!
I almost fainted right on the spot! She did it three more times before she got too tired and started whining like she was in some pain. So we stopped. I tell you, friends, there was no momma more happy or proud or amazed or joyous than me, today! Six years, people, we waited for this! SIX YEARS! Oh and one more small miracle, she crawled reciprocally today in therapy too, for the first time! She always has bunny hopped, but today, she was rockin' it and decided to start moving her legs and hands in the proper fashion! She was so proud of herself, re doing it over and over again to practice! Just when I try to accept how things are for her, she always knocks my socks off! What a day for a two hundred post! I will be posting a few more awesome things that happened today, in the next few days. Lots of good stuff!
Off to dance myself to bed and dream sweet dreams of my girl, running through a field of wildflowers!
Thursday, June 3, 2010
Who knew Hummus could be so much fun? She sat there for a good hour and a half without complaint and enjoyed a little of the exotic....
Posted by Candace at 4:27 PM