Friday, April 30, 2010

It's Heeeeeere......

After an ETERNITY of waiting...

We were all on pins and needles, last night, waiting for today to come!
We had to wait until after lunch but it finally got here.
I was so excited to get it turned on but it took a lot longer than I expected to get thing thing up and going. I will say that it does NOT come with an instruction book. There was a small 5 page booklet but it did not give any instructions. That part was pretty frustrating since I have never owned an Apple product. I couldn't figure out how to turn it on. When I tried to it would turn right back off. Turns out I had to download Itunes to my PC, then to the Ipad, then register everything, then make up passwords for about a dozen different subjects.
But finally after about 4 hours,
Then I had to figure out how to access everything....
Another almost 2 hours....
But finally it got up and running and everybody did the happy dance!
We downloaded a few free apps...
Some ABA flashcards..
A piano....
A free version of Tap2Talk.
Faith was on cloud NINE!
Carl was on cloud NINE...
Heck, I was on cloud NINE...
(After making peace with the thing!)
She quickly remembered it and began trying out all the little pictures.
She really loved the ABA Zoo animals flashcards.
(this is the free app for Tap2Talk, very cool free tester if you are considering the Proloquo2Go.)

I think that I will be doing a LOT of posts about our experiences with Faith's new tool.
I plan to get some video of her using it, up when Blogger will cooperate!
If anyone has any questions leave me a comment and I will try things out and find the answers thru trial and error.
We also got a Square Trade warranty for her Ipad...a two year warranty for less than $100 that covers dropping, spills, defects, failures and the like. So we are covered, hopefully!
Check back with me over the next few days, I will be blogging about our fascinating journey with this cool device!

Thursday, April 29, 2010

Quicky Update.....

Just a quick update! I finally called Apple, today, to find out what was going on with our Ipad. I got the news I was praying for!
It will be in our hands tomorrow by 4pm!
I am sooooooooooooo excited!

I just checked the tracking and it is en route in Tenn., just a state away!
Did I mention I am soooooooo excited?

Faith's world is about to open up and I feel like I have wings....
I am sending off an email tonight to the AAC therapist to prepare to start our new therapy next week (I hope).
Be sure to check back tomorrow....I have the camera all ready to photograph the big event!

Faithy I sure hope you are as excited about it as I am!

Wednesday, April 28, 2010

Lessons learned from a six year old....

Faith has taught me so much, in her short six years.
Before I had kids...I thought that the parents were the one's who did the teaching!
Boy, was I wrong...
1. LOVE...... unconditionally....beyond words....totally.
(Like when she wakes up in the morning and reaches out to me for a hug and a kiss or when she carries her baby doll around and treats her like a real baby.)

2. NEVER....EVER.....Give Up! Even if EVERYONE else tells you to, even if medicine tells you that your child is worth....less... than other kids.
(Today, Faith saw me pull my pants down to go to the bathroom and she started trying to pull her's down, too. Embarrassing, yes, but priceless!)

3. Have JOY....every, single day. For the rest of your life! Find your joy in the little the big things....but find it!
4. This is a big one.....SACRIFICE.... It's the name of the game we were forced to play!
Society has taught us all that we should be selfish, think of ourselves first, get ahead of others. But sacrifice is really the test of a true Christian...of a true loving person. Sometimes that means no dates for years or waking every couple of hours to make sure your child is still breathing. Sacrifice, to me is the ultimate test of love. I am humbled to say I have learned how to sacrifice, without condition...without resentment.

5. Be carefree and silly at least once a day! I love to see how carefree Faith is. She doesn't worry about anything...just like the lillies of the field. She wakes up happy and goes to bed happy. This has been a hard one for me, since her diagnosis, but she is working on me! Today, we made a big water mess all over the kitchen, in her bathtub, splashing our brains out!

6. Make up cute hair do's to get attention....for your hair..... not your wheelchair!

7. Leave the dishes....sometimes....they aren't going anywhere and if you die and some stranger has to come into your house...well.... you won't be caring anyway! I have had a hard time with this but I went 3 days without doing them this weekend!

8. Buy cute, frivolous clothes for your kid's...when they grow up you may not be able to afford them! And it's ok if they get ruined...they will grow out of them too quickly to get much use out of them. There are few things cuter than my girl wearing Liberty of London dresses and cardigans!
9. Brag every chance you get....who cares if all the other parents get annoyed with you! You gotta celebrate every little victory.... like helping to put braces on or taking steps in a walker! I am the best at this, every small accomplishment gets plastered all over the place until every one is sick of hearing about it!

10. Acceptance....the ultimate lesson learned. No words needed here.

Thank you, Faith, for all these hard lessons you have taught me! They were the ones that no one else could teach me!

Tuesday, April 27, 2010

Confessions of a bloggie daddy...

Hi everyone, I have a special guest blogger today...
Carl, my super sweet hubby!
I have been asking him to do a guest post for me and I am hoping to get a few more "daddy" perspectives on here, soon! Here is a little introduction from him.

Hope you enjoy...

Hello everyone! It's Carl... better known as Faith's daddy... or Candace's hubby! I am completely cool being known as with both and proud to both. In fact I was born to be both of those things. I am the sappy daddy sometimes. Everyone in my office knows everything that goes on with Faith, from losing a tooth to any seizures she has to when she does something new. I have about 100 pics of Faith under the glass top of my desk at work and show every new one to everyone when I bring them in. I am not saying this to brag, I just want you guys to know just how much I love my family. The best part of my day is when I come home from work and see those beautiful smiles and hearing Faith yell "DA DA"! The day Faith was born was the scariest, greatest, most amazing day of my life. I love Candace with all of my heart, but that day I really learned what love was. Seeing that little girl that I helped make was unspeakably amazing. The weeks... and years that followed were emotional roller coasters. I was initially SO ANGRY that she had the "problems" she has. I didn't know what the heck C.P. was! Now I have came to realize that she is perfect just the way she is. How cool would it be to wake up every morning completely happy and ready to see what the world will bring you? How many of you can say you do that every day. If you say you do you are lying! ...but she does... and I bet most of your children do, too. She is the best blessing I could ever imagine, and her mom ain't too bad either! Anyways, I hope my first attempt at blogging wasn't too bad. Ya'll have a great day!

Monday, April 26, 2010

April 25, 1994

I don't talk much about my family life....that life with family, outside of Carl and Faith. As a child, I had a rough childhood, to say the least. When I was sixteen, my younger sister and I were forced to escape/run from our home, for our lives. We both almost lost our lives in April of 1994. It was a traumatic event and a marker, in my life, that is not easy to forget and too painful to discuss in detail, here. When we ran, we had to leave the state to avoid being "arrested" as runaways and ended up in Idaho with some relatives. Eventually we made our way to S.C. where my grandmother lived, to try to restart our lives. When we finally were able to enroll in school, I was in my last four weeks of 10th grade. We were sent to a tiny school about half an hour away that was actually a middle and high school combined. On our first day, I was shown around the school by the Principal's daughter, so I could find my classes. I finally began school in the last period of the day....
I was given a seat in the back, near a cute boy wearing a Pearl Jam t shirt and Nike flip flops. During the class, someone passed me a note (insert cute boy here) that read...
"Hi, my name is Carl. Where are you from? Can I have your phone number?"
He sure was cute and very precocious!
After class, he carried my books and let me store them in his locker since I hadn't been assigned one yet. (Bonus Points for cute boy)
He called me that evening and that day began....
Our story.
From that day, we were inseparable. We went everywhere together...ball games, concerts, school events, social events and fundraisers. We just clicked from day one! Our birthdays were just six days apart and he even knew my grandmother (who taught at his elementary school)! We went to our junior and senior prom..
(Yes, we were even prom king and queen!) and eventually graduation!

The summer before we met, Carl's mom had passed away from lung cancer, when he was just 15. So we both felt like God had just lined up all these weird events to bring us together, at the right time.

A few months after we met, a friend of Carl's told me that on the first day of school, Carl had seen me and told his friend that he had seen the girl he was going to marry!

Our story had all the classic love story trademarks. It was like we both just knew that we were supposed to be together. We were young but there was just that knowledge from the beginning!I had friends but I really just wanted to be with him, all the time. We like (most) of the same things, we loved to travel, we liked the same kind of music and even the same kind of food!

We weren't wild and crazy kids...we didn't get in trouble. We did things like working at the animal shelter, volunteering for environmental club trash pick up and the like. We just had fun being together.

I always dreamed of having my "prince charming"....the kind of love that people imagine but rarely grandparent's kind of love. I wanted the love where you just knew that your partner was made for you and you for them. After seeing my parent's marriage break up in a nasty divorce, I was NOT going to have that!
I wanted a best friend as well as a husband.

And I got it!

This man was made for me! We still spend all our free time together, enjoy each other's company and know that we have each other.
Sunday was...
Sixteen years since we met...
Half our lives.
We met at sixteen and this year we are thirty two.
I can hardly believe it! I remember when we used to imagine what that would be like. And I pray for 50 more!
This love was meant to be...Thank you, Lord, for this man!
There is no other person, I could ever invent who would match me more!
Happy Anniversary, Babe, I love you just as much as the year we met! I still feel that exciting love in my heart for you!


Today, Faithy got her fourth haircut. Every year for the last three years around April.....
I just can't take it any more! I love her hair long but it gets to that point where it is like trying to comb a rat's nest. No amount of conditioner or detangler or comb or brush can get through all those curls....
She had about 8 inches cut today.
In the four cuts she has had, we have cut a total of 27 inches!

This girl is like Rapunzel, her hair grows so fast! She grew over 8 inches in the last 11 months, people!

We usually go to a children's salon but I was at my last straw this morning and it had to go! So we headed to the first salon I could find and I went in and gave them the "special needs" talk first.

I told the girl I wanted to be able to french braid it so it needed to be long enough to do that. In the end curls and wet hair are always deceiving and once it was dry it was much shorter than I had hoped for...but....
hair grows back, right?

Especially in this kid's case!

Note: this was the first time I didn't get to save her was scattered all over the place and the girl was hurrying us out. :(.....

Saturday, April 24, 2010

Charleston Photos and Fun...

Some pictures from our trip, this week.....

We found out that a plain old picnic bench makes a great practice tool for working on standing and sitting without any one's help. (We are seriously considering buying one for the house!)

Edisto Island...Faith scraped most of the skin off her poor knees that day, walking around on that rough sand...

She really liked to hunt for hermit crabs on the beach.

A tricycle.....Every little girl's dream. we need one of these too! She was so in love with this thing, we were so temped to buy it even if she couldn't REALLY ride it.
Our favorite place was the waterfront park on Mt. Pleasant. They had an amazing playground with these cool bucket seats that spun around. Faith had so much fun playing on them and poor Daddy got so dizzy!

Wednesday, April 21, 2010

MUSC update...

Well, we made it to Chucktown, safely!
Faith had her epilepsy appointment, this morning. Dr. Wannamaker was very excited about how few seizures she has had in the last three months, just two. He said, clearly, something else was needed to help her.
He ordered some labs and we had them drawn, after our appointment. I had always heard that you didn't have to check Keppra levels, like you do with Tegretol, but he wanted a blood level for it. So I asked why and he said that some of the new seizure drugs out there are advertising that you don't have to check levels but that's not entirely true.
So he said that he might try to up her dose, a little, to give her an extra buffer once he sees her levels. We also talked to him about "getting rid" of our neuro back home. He said he wanted us to have someone close to home so if we had an emergency we could get help but he is happy to treat her and see us every few months. Great, that's better than our current guy, LOL!
So it was a great visit. He said that Faith looked better and more alert and interactive than she had been in January, after all those seizures. We will go back in Sept, barring any major issues and we will also continue to see our old neuro (I guess).

We got out, afterwards and did a little exploring around John's island and our favorite place Rosebank Farms out near Kiawah island. Faith had fun looking at all the beautiful azaleas. We also met a wonderful woman in Mt. Pleasant today who has an 18 yr old daughter who had a stroke at birth. She was lovely and we talked for over an hour! I asked her all kinds of questions and I was thinking about several of our friends out in bloggie land when she told me her daughter suffered with infantile spasms. So she gave me a run down of some of their experiences. It was just one of those "meant to be" moments, when people's paths cross. It was so cool to meet her and we exchanged email address' to keep in touch!

We are heading down to Edisto Island, tomorrow for a little more fun before we have to head back to reality. This last picture is at a local off leash dog park, yesterday. Gandy had fun meeting tons of new dogs but I think Faith had more fun meeting them all!

Monday, April 19, 2010

Off we go....

I am almost done packing...
I got our dog sitter all lined up....
I cleaned the house so that if something awful happens, people won't come in and drop dead from the mess...
I finished the last of our responsibilities with therapy and we are finally home for the evening...
Now we can leave tomorrow morning for Charleston, semi carefree!
I hope.
We are going down for Faith's follow up with the Epilepsy Center. I have my list of questions and requests for the doctor. Our appointment isn't until Wednesday, so we should have most of Tuesday to have a little playtime then part of Wednesday and all of Thursday. We are snagging a few extra days since we are down there.
This coming weekend Carl and I will be celebrating an anniversary of sorts...
Sixteen years since we met each other. Half our lives! I will post a blog about it later when we get home from the trip.
Happy Anniversary, Babe, I sure do love you!
Keep our family in your prayers, as we travel and a few prayers for a good appointment would be helpful too!

Friday, April 16, 2010

Scholarships and a freaky almost accident.....

I am so excited, we finally got the word today, that Faith got her scholarship to continue therapeutic riding! We got approval for six lessons, six more weeks! YES.

A freaky thing happened, at the end of her lesson, today. The group was walking Faith and the horse down into the cross tie area, in the back of the barn.
Over the cross tie area there is a raised walkway that goes into the top of the barn. Some people were delivering equipment, today and were using the ramp to enter the barn. Just as Hannah, the horse, was walking under the bridge way, a worker started dragging a metal chair across. It spooked the horse and she shied backwards in fright. I started running for them in a panic but Caroline, our instructor quickly grabbed Faith by one arm and dragged her off the horse, just in time before she flew off the horse! Faith came flying off that horse by her arm and Caroline just got her away before the horse tried to take off! I thought Faith's arm was going to be dislocated, as quickly as Caroline got hold of her. It scared the daylights out of me! Faith was OK and just seemed to be surprised but it was such a close call, she could have been killed! She didn't cry and we examined her closely but she seemed perfectly fine. I was so thankful that Caroline was there and prepared. She just moved in one quick motion and before the other helpers even knew what happened Faith was on the ground! took 5 years off my life!
I know that horseback riding can be risky but the team is well trained and thankfully well prepared. It hasn't scared me from taking her back, but it did frighten me terribly! It was just a fluke accident. Funny thing is, before we started riding I saw a person walking over the bridge dragging some kind of chain and thought "That isn't very smart to have that bridge there when horses are usually underneath." Little did I know!

Wednesday, April 14, 2010

FIND J-O-Y....

A word that is a necessity in my life..

When Faith was first diagnosed with CP (and other junk) it was like a punch in the stomach that wouldn't stop. It felt like things would never get better like life had just stopped for our new family. A feeling in the pit of my stomach, every day that....was awful.

I hear a lot of parents with special kids who are younger struggle with the frustration, acceptance, change, disaster and heartache. I just want to reach out and tell each and every one of those parents that it will get better.

For me, time and faith have been big healers.
When you are in the throws of a diagnosis with a young baby or child it can seem like there is no joy left in life.

I have found that the best medicine for me, is daily J-O-Y. I have to find something each day to give me joy about Faith. Be that a toy that she can turn on or that she stands in her stander for an extra 10 minutes or she tries to say a new word. Some days it's watching her riding a horse, carefree and thrilled. Other days it's finding out that she was really watching me while I dusted the playroom and seeing her, with her own little rag that she found, dusting the floor! This child brings all kinds of joys, to me, every day, in silly things she does or just looking at pictures of her. I also believe that JOY is contagious and overflows into your child. If there was one thing I would want Faith to remember about me is that she saw me joyous, every day, at least once!

I urge each of you to try to find a small joy, each day, in your child and dwell on that. It has helped me immensely to heal and to get thru each day. Yesterday, I found joy in watching her climbing stair (up and down) with assistance at therapy, on land (for the first time). I also found joy in hearing her meet a goal in speech therapy...10 consonant sounds with minimal cueing! Tomorrow, give it a try and see if you feel a little better. I would love to hear about your experiences with finding joy in your child's life! Hopefully, we can spread some joy around to each other!

The cat whisperer....

This last weekend we spent a lot of time in the yard, cleaning up from winter. Faith is a tough cookie to keep happy when both mom and dad are trying to get work done. She usually fusses and wants to get around the yard. This is two scenes I came across this weekend. Lilly....our stray mouser, keeping Faith company....
I quickly ran to get the camera to get such a genuine display of affection between the two of them...

I know I have talked about the unusual connection Faith has with animals. I am a huge animal lover and always prayed my daughter would love them. But she has a very unique effect on most animals she meets. Believe me, it's weird because Faith is rarely gentle with any of them. She pulls their tails, rubs their fur the wrong way, squishes their necks and generally abuses her most loving way! And yet, they are drawn to her.

Our other cats are the same way and I can't explain it. I know most cats hate small children....(a vague recollection of three yr old me a tom cat and a garden hose....ouch!) But animals just love her. It is especially weird to see a cat climb up on a wheelchair that can roll around!
I sure wish I could explain it.....I know that lots of people say that animals can sense things with people. Who knows? But I choose to believe that GOD has given her a gift....given me a gift...of an answered prayer, small as it may be....

Tuesday, April 13, 2010

What I believe....

So I decided to talk about my perspective on the subject...
When I was 19, I was diagnosed with juvenile type 1 diabetes. I always thought, I would never have kids and when I found out I was pregnant it was the furthest thing from my mind. I had not done the best job controlling my blood sugars but as soon as I found out I was obsessed with testing, every day.
(me when I was about 8 months)
I did a good job (my endocrinologist even said my blood sugars were better than hers) and we were all convinced that our baby would be fine and that we would have a perfectly healthy baby girl.

(The first picture of Faith, about 7 weeks gestation)
Things, of course, did not go as planned. She was turned wrong and had to be delivered via C-section, after 4 hours of pushing. Then she had hypoxia and developed seizures that went unrecognized by the community hospital staff. There was no NICU for her without moving her and putting her into a coma. She had developed a blood clot that lodged itself in the saggital sinus area of the brain that prevented her from getting oxygen. She was NOT OK.

(Faith about 6 months old, you can clearly see the stair step on her forehead that revealed craniosynostosis, a cranio-facial defect of the skull)

Things happened, she suffered a stroke and parts of her brain...died.From the start...I blamed myself. It was ALL my fault! It was...really! I....Candace....held responsibility and blame and control over all that happened to my daughter. At least, that's how I felt back then.

It was a huge burden to bear and I suffered with it for a long time. But grief eventually leads to acceptance and a clearer perspective of reality.

So here is what I believe about Faith and what happened to her...

I believe that Faith was meant to be how she is.

I believe that something may have happened during fetal development that caused her brain/skull to develop abnormally.

I also believe that I should have been delivered at a larger hospital with a NICU, a decision that was ultimately my doctor's. And that the nurses and doctors who cared for her should have identified her condition sooner.

I believe that I am just human and ONLY GOD can control what happens to my child. I can only be the best mom I can be. Even if I don't understand. I am not some special, magical person who can control, fix or change the outcome of a stroke.

I believe that GOD gave us Faith, to show us what true love, sacrifice, commitment and faith is all about.

I also believe that it is absolutely NORMAL for a parent to have those emotions, it's sort of a rite of passage, on that road of grief.

I believe that although it is not easy, although NO parent wants something to happen to their child, although it can be heartbreaking to witness....Faith is MY miracle! She would not be Faith if she were any other way.

Miracles do NOT always arrive with a beam of bright light, they do not always come dancing down the road and tap on your shoulder and say "Hi, I am your miracle". Often they sneak up on you and grab you by your shoe laces and trip you. And at first they can feel like a slap in the face and you want that "miracle" to go back where it came from. But if you give it time and try to learn how to cope....your miracle will flower into this beautiful example of God's commitment and love to His children.

I know that what happened to Faith was not my fault, it wasn't any one's FAULT. Some mistakes were made, things could have been done to catch her stroke quicker. But in the end, she is perfect just the way she is. If I can say my daughter understands love and happiness and compassion...what more could a mother ask for?
(Faith at 11 months old, after her craniotomy. I have to laugh at her hand in this picture!)