Saturday, January 30, 2010

Tickle Monster...

YOU WILL NEED TO PAUSE THE MUSIC AT THE BOTTOM OF MY BLOG...

I love this about Faith...
She GETS tickling! She loves to tickle everything.....pillows for example.
Sometimes she just does it out of the blue, we might be sitting on the couch, together and she just reaches over and starts tickling me! She knows it's funny and the louder we scream, the funnier it is, to her!

video


Even though she doesn't talk, she has this THING about her. She GETS things. It's really hard to explain to people who haven't met her but she has this uncanny knack for reading into what people do and say. It's very strange to me. Sometimes Carl will say something and I will give him the "look"- you know, the "you are ridiculous" look...and she will just crack up, starts screaming and laughing and slapping her leg. Like she gets what I am saying with my face! It's so weird!

It always surprises people who haven't spent a lot of time with her or have just met her. I secretly think that it's her special gift that GOD gave her to show people not to assume anything. That kids who don't talk and who have severe physical limitations can be these DYNAMIC, FASCINATING, COOL people! I think of her as this huge personality in this tiny, little, different body! She is instantly the center of attention when she comes in a room and not just because she is in a wheelchair. Which is so strange to me b/c I am NOT that kind of person. I prefer to be OUT of the spotlight. It's her personality, it's contagious! People often leave her with big crocodile tears b/c they are so moved by her happy go lucky attitude. I regularly hear people say..."you guys are so blessed by that happy little girl."

And they are right....


Friday, January 29, 2010

Proof that you can't fool your kids...(not even special needs kids!)

Faith has this little cat toy that she just loves...
It's a feather on a string on a stick...
I HATE this toy...
Every time she finds it, she slings it around and whips me in the leg whenever I happen to pass by...
(NOT intentionally, she just loves to sling it)
Now why, you ask is this toy behind my bedroom picture? Well, the other day, she was playing with this toy and she whipped me in the leg for the last time....
So the minute she turned her back, I grabbed the toy and quickly stuck it behind the picture, since it was the closest place to hide it where I happened to be standing...
And there it sat for one whole day, with me thinking how sneaky I was and all proud of myself for outsmarting her...
Then yesterday morning, this is what I see when I walked into my bedroom...

Lesson 1: You can't fool your kids, no matter how hard you try, they will ALWAYS figure you out...

Lesson 2: You shouldn't give in to your kids......BUT if you DO, it should be because they are THAT smart and THAT cute!

Thursday, January 28, 2010

HEART-WARMING...

Today, the girl scouts made Valentine cards for a local nursing home...
Faith loves playing with paper, foam stickers and of course, crayons..

Her buddy for today helped her pick out her stickers and she helped her choose a design for her cards....

She had so much fun and paid so much attention, except she kept wanting to change her crayon colors. They had a big basket and every two seconds she wanted a new one. Funny thing is, she would put the old one back in the box and then pick it out again. I think she just liked the idea of making her own decisions..

This is my favorite....
Love this little girl!
BTW: Her buddy, the little girl who clings to Faith, just about had a breakdown in the parking lot b/c she wanted to go home with Faith! Did I mention...she is 9? Faith has a true friend! This little girl wanted to take her out to the car and wanted me to teach her how to put Faith in her car seat and how to fold up and put away her wheelchair! Sweetest thing ever....Bring tears to my eyes every single Thursday!

BTW: Faith beat her cookie goal with over 175 boxes, so far!!!! GO GIRL!
BTW again: check out the link to this website called Teaching Learners with Multiple Special Needs
I stumbled across it tonight with this wonderful video that brought tears to my eyes!
Most of you know that Faith's first "language" was signing and still her primary form of communication... Seeing your nonverbal child sign their first sign after 4+ years with no language is..........indescribable. Sure puts sign language close to my heart......LOVE IT!


Wednesday, January 27, 2010

OMG, I AM IN LUVVVV....

OOOOOhhhh Baby, I am IN love!
Since Faith is nonverbal for the most part (with the exception of a few approximations) we have been exploring the world of augmentative communication. We have checked out a few things but to be honest...I hate most of them. They are hard to carry or difficult to work or have ten million pieces/PES tags or are awkward. Our therapist has suggested several but I have been draggin' my feet b/c I know we aren't going to use them like we should, if they aren't practical!

SO of course, today, I about died when I saw Apple's latest product...THE I PAD! This is what I have been screamin' about for....well... forever! I kept saying an iphone would be a great product for Faith except she couldn't manipulate the small screen. But with a 9 in screen and tons of apps, well, I believe this is the wave of the future for kids like her!
Most of the comm. devices run into the thousands of dollars and in SC, you get one...ever....so it better be what you will use for the rest of your life! How likely is that with a six year old? Not very! But we might be able to swallow $600, with our tax refund. We googled some of the apps and they already have a aug. com app for the iphone and a PES app! Did I mention....I am in love?
Think about it....access to the Internet and an infinite amount of apps, websites, tools and anything else you can imagine. This is the dream tool for Faith...I am convinced! With it's light weight-1 1/2 lbs and thin screen- 1/2 inch- it would be so easy to carry around with us compared to so many other systems that require you to record your voice or have thousands of pictures to carry around! I am tellin' you this is so cool! I am already plotting how to get this tool for her....Anyone else out there feelin' me? Have you heard about this on the horizon for special needs kids?

BTW- here is a link for Proloquo2Go- the apps program for Apple's iphone- freakin' awesome!

Tuesday, January 26, 2010

El Cheapo...

I am the self professed queen of getting good deals. There are few things I love more than hittin' a good clearance sale or finding a cheap place to shop....

There I said it, don't hold it against me, friends.....
~I can hardly stand to pay full price for ANYTHING!~
That said, I love thrift stores, most of Faith's clothes come from three in our area, that are notoriously great!
Monday, I went to one of the Goodwill's, in the town where Faith goes to therapy. They run these 50% off sales to cycle thru their stock of clothing. A few weeks ago, I had my eye on several pieces that were uber cute but couldn't bring myself to pay the full price ranging from $4.15 to $3.00. So I waited...
I couldn't believe that I found almost every single item on the clearance racks, Monday, after much searching! I spent a total of $13+change for these outfits....
The most expensive thing were the jeans...a whopping $2.07. Everything else was $1.75 or less...
Faith modeling her $5.00 outfit...Old Navy sweater, Old Navy pull over and Carter's jeans...
This shirt was $1.57
All three in these last pics were a $1.57 also!


I LOVE me some good sales...How 'bout you, guys? Got any good cheap places that you cannot live without? Any secret places? I have a few of my own.....but I'm not tellin'!


Monday, January 25, 2010

Rolling Progress.....

OK, here is my new favorite video of Faith. This was taken last week, at her pediatrician's office. She has had her wheelchair since October, but she has only figured out how to push it backwards. She goes in circles everywhere......Finally on that day, she REALLY wanted to get to that stool, so bad! So she figured it out! All by herself and I was lucky enough to get it on video! She is still working it out but if I tell her to push it the other way, when she is pushing backwards, she can do it for short distances! I am so proud! She rolled herself right under a garment rack, at the Goodwill, today! I was laughing so hard and so was she! My BIGGIE girl!

video

Sunday, January 24, 2010

Faith completed day three on Keppra, today. She was started out on a very low dose, to hopefully avoid major side effects. She is on 1 ml twice a day plus her Tegretol, in between. We now have 8 meds that she is on! I feel like a walking pharmacy! Anyone need some melatonin? Every meal, she is getting at least one medicine! I feel so bad....

So she seems to be doing very well on the new medicine. I have noticed that she seems to get tired about two hours after she gets it. The first day, she took a nap, which NEVER happens! But that is the only thing I have noticed. Oh, and NO seizures! We give her evening dose when she gets her other night meds, so at 6pm she gets 5 meds, people! Anyway, when bedtime comes she can hardly hold her head up! Poor girl.....


This is what Faith's hair looks like, naturally! Can you believe how curly it is? I wish she could wear it down, it's so beautiful, I am jealous!


Saturday, January 23, 2010

Just pictures...

Not much to say, tonight, so I am posting some pictures of my girl, over the last few weeks...Enjoy...

Faith, after a bath


She looks like she is watching TV, but I swear, it wasn't even on!

I love this picture of her...check out what her shirt says...

The Girl Scouts teach Faith about smarties candy...They carefully gave her the candies every time she dropped them, but she knew what to do with them!
.

This is my favorite picture...two of Faith's friends helping her walk...

Friday, January 22, 2010

Knockin' on wood...

video

OK, I am knocking on wood, as I write this post. Believe me, it is nothing short of amazing! For the last few months, Faith has showed a dramatic interest in F-O-O-D! A four letter word, in our house... Many of you know this phenomenon all too well, kids with CP and food often do not go well, together. Faith struggled from day one, she never cried for food, never wanted it and would fall asleep just to avoid it. We would spend hours and hours and hours trying to keep weight on her. For the first year of life, feeding could take up to 8 hours a day! It was awful! So when she turned one, we opted for a g tube.

In 2007, Faith and I spent 8 weeks in Atlanta at the Marcus Institute's inpatient feeding program. She had just turned 3 when we went. She and I lived down there by ourselves and BOY was it hard! I hated every minute of it... They mostly work with autistic kids and their program is largely ABA techniques. She did not do very well, to say the least. They were never able to teach her how to swallow. We measuring food, vomit and drool 6 times a day, as they fed her. Food intake was in MINUTE amounts and most everything came back up. We had HOURS of training on all kinds of techniques for feeding, including Vital Stim to stimulate swallowing, all to no avail.

When we returned, Carl and I pretty much gave up on feeding her. It was so stressful and terrible for everyone.

Now she has had three years to recover and develop and she has made this amazing step. I am afraid to even think it could be true! After all, she has had a g tube for five years now. But she IS swallowing some food...I watched her closely tonight, she had about a tablespoon of potato and she didn't drool anything out. Her shirt was dry! She kept begging for more! Not getting my hopes up too much, but maybe one day......

Thursday, January 21, 2010

More adventures...

Faith and Daddy pose on Isle of Palms...

So our meeting with the epileptologists was wonderful, as I said before. The doctor was very smart and actually had common sense too! It was funny because after a few minutes with us, seeing all our materials, documents, research, etc he asked me if I was going to grade his office notes! Then he asked me where I practiced medicine! I told him, dryly, The School of Hard Knocks...

We asked a ton of questions about their opinions of her and her brain issues...you know, just to get their perspectives. I asked him about the thinning of the corpus collosum and he agreed with the research I had done about it. He said that this part of the brain developes around the 15th wk of gestation and usually when there are issues with it, they are issues that developed in utero, not necessarily after her stroke. Which is slightly painful for me to hear...we have always held to the belief that trauma during her birth caused her problems from her positioning and excess stress/time in the birth canal and problems with delivery. He said, based on what he saw and read in the notes, that he thought that she was probably predestined to have these problems, because of ALL the other diagnosis that have gone with it. Which, as Christians, we do believe that she was predestined but not based on that reasoning. It is a very murky subject, to be sure.

He also said that based on his experience, over the last, several decades, that she would probably be able to walk short distances but mostly rely on her wheelchair, that she would probably have SOME words but not be able to put together coherent, complex sentences and (this is especially interesting) that she would not do well in a standard, long term school situation or be able to attend regularly. (Which is great conformation on our homeschooling plans!) He said that, of course, most kids with serious brain injury and especially tumors usually have lifelong difficulty controlling seizures, which we knew. But they all agreed that their goal was to drastically decrease/eliminate her seizures, to the best they knew how. They were so sincere and didn't dismiss anything we said! We try to video most of Faith's seizures and usually when we try to show her regular neuro, he never wants to see them. But these doctors were like
"Do you have any more videos? This is so helpful!"

I am excited about the seizure conference and hopeful that they may come up with some other ideas or at the very least, a bunch of doctors getting together and reviewing her! My mission, now, is to make a permanent connection with these doctors. I shot each of them an email, thanking them for their time and tomorrow am sending out thank you letters. Hopefully, they will form a connection with her that will help us, in the future.

We got a quick lunch at the Crab Shack, our favorite restaurant on Folly Beach and picked up the dog at doggie daycare before heading to the beach to dip our toes in the sand, just once. The beach was wonderful, 70 degrees, and we found hundreds of starfish, littering the beach!
Faith with her favorite toy, the wrapper snapper, she is getting pretty good at pulling it apart~!








Wednesday, January 20, 2010

Adventures in Charleston...

We just got home from Charleston, after a whirlwind trip! I will be brief but I wanted to post because we had "good" results at the epilepsy center. Our appointment was set for 9 am, we arrived at 8:15 and were quickly called back! WOO HOO! The doctor she saw is a former president of the American Epilepsy Society, which is awesome. He was very cordial, kind, caring, sympathetic and understanding. AWESOME, again! I had packed in a few hundred pages of records, MRI's and the like. He carefully examined them and then asked a host of questions regarding her birth and all the subsequent diagnosis'. Then he asked if he could borrow a copy of her most recent MRI and left the room. He came back in with the head of the program, the doctor who started the epilepsy center! I recognized him immediately, from research. They reviewed her records and had some disagreements of what had/might be going on with her. They were uncertain about a lot of thing because her seizures don't present with the way her EEG's read, which has been a frustrating thing for me! So they agreed that they want to present her case in front of the seizure conference that they have twice a month at MUSC! SO COOL! Anyway, they agreed that she needed to begin to try another med, Keppra, in addition to the Tegretol. So here we go...down a uncertain road. BUT......we were extremely pleased with our visit. They spent almost two hours with us! They seemed to be very interested in helping us and coming to a consensus on how to treat her seizures. We actually felt like we mattered! Her doctor even gave us his personal cell number in case we had ANY problems! How many doctors do you know that would do that? I sure don't.... I will post more when I get my thoughts about me.. SO HAPPY!

Monday, January 18, 2010

Chucktown...

We are off to Charleston, in the morning.Faith's appointment at the epilepsy center is Wednesday morning. Please keep our family in your prayers. Prayers for safe keeping and prayers for some answers. On a lighter note, we are hoping for a few hours for some good seafood, at our favorite restaurant in Folly Beach.

Sunday, January 17, 2010

Kaye stander....

This is Faith, in her loaner KAYE stander...

It's a simple design but out of all the standers we have tried, it has been the most effective.
It has a base with two slide bars for each foot to be positioned it...
Padded area in front where her stomach, knees and chest go....
A raised back pad to support her if she leans back...
A BIG tray....
And a hinged arm that locks behind her waist, when she is in it.
The best thing about this stander is that it does not have a lot of things to hold her in, it basically relies on gravity to keep her legs down and an arm holding her in from behind.
We have tried about 4 different kinds, one of those being a smaller version of this stander, when she was much smaller. It was always our favorite so we were excited to get our hands on this larger version, last week. She has actually been asking to go in it, too, which is great!

video

Friday, January 15, 2010

Things I wasn't expecting....

Periventricular Leukomalacia of the parietal and occipital lobes
Thinning of the posterial body of the corpus callosum
Increased T2 hyperintensity within the periventricular white matter.........
*
*
*
Words I had not expected to read when I picked up Faith's medical records. Have you ever had that feeling.....like you try so hard to learn about your child's condition and then another thing that you didn't know about pops up?
Well, that's me, today. I got out to the car and started reading, as I always do, and I see these NEW names of things that I didn't know about.
This is what I mean about having access to our medical records. How do you know what to ask if you can't see what they see or they don't explain what things mean. If I hadn't requested specific records (ie: MRI findings besides just her MRI results) I would have never known those things.
We knew that Faith had severe white matter volume loss, we knew that her ventricles were enlarged because of the loss of white matter, we knew that the sagittal sinus area was abnormal due to the blood clot. But no one ever gave us names for those things or other things that had happened.
Some of these new names I don't know anything about and despite significant googling I still have limited information. The big one is the thinning of the corpus callosum. If anyone out there is familiar with this condition let me know, OK!
I sat in the car and had a good cry, as I read. Reading medical records of your child with severe brain damage is REALLY painful. Even when you know A LOT about it!
If you have never requested entire medical records from say.... your neurologist..... YOU SHOULD. It gives you a different perspective and often info that you would have otherwise never known! My favorite reads were the doctor's office notes.....many comments about my intense questioning to multiple doctors. Like that's a bad thing! Another favorite was from the oncology office. (I have had a lot of problems with them, as stated in my previous post) In their office notes it was recorded that "mother was highly upset about the time waiting to see the doctor, time it took to get coordination for treatment at Duke and having to see different doctors every visit." YES... I was upset that I had to wait over 4 hours to see the frickin' doctor! YES....I was upset that after dozens of phone calls to the office, your coordinator did not mail the required paperwork to Medicaid after telling me she did! YES.... I do get upset when I have to explain to the tenth doctor about all of Faith's conditions because they don't read her chart before seeing her and none of the previous doctors bothered to explain it to them! CAN YOU IMAGINE?

Thank you HIPAA for being a pain in the butt....

Tasks for the day.....

1. Call oncologist office to ask for copies of Faith's medical records to take to Chucktown..

2. Go to Greenville to pick up said medical records as well as records from neurologist's office...

3. Have hissy"FIT" in oncologist office after they refuse to give me all of her records, specifically ones pertaining to correspondences with Duke. They sited HIPAA laws prohibiting them from giving us any records in Faith's files that originated at another office/clinic. Then have UBER HISSY FIT after they charged me $30 for 22 black and white copies of "some" of her records! I "could" have avoided this "fee" if I had requested them to fax the records EXCEPT every time I have asked this office to do so in the past they NEVER get it done and we are operating on a very short time frame here....

$30 bucks worth of records on left.....FREE records on right!

4. Get to neurologist's office and receive over 100 pages of records (including records and correspondences from oncology office/Duke/peds surgery and neurosurgery!) for FREE! Mind you, these offices are in the same hospital system!

5. Go thru drive thru for a quick burger and head home....only to find out they put mustard on my burger! I HATE mustard!






Thursday, January 14, 2010

Our life line...






This is Faith's medical notebook. In here, is her life.... schedules, medical records, phone numbers and addresses, appointments, documentations, lab results, shot records, diagnosis lists, research on her conditions, research on doctors she sees/has seen, evaluations, therapy notes and IFSP's. After she was born, I began to realize that a simple calender in my purse was NOT enough! So I began working on a notebook that I could carry with us, everywhere. Over the years it has evolved and a few years ago I found a binder with a carry strap that fits over my shoulder. This is our lifeline! We go everywhere with this notebook. I usually change out everything once a year and update everything as well as keeping any important older info. I used to buy those expensive calenders to go in it for like ten bucks. But this Christmas I found a great cheap alternative at Big Lots for a dollar fifty. A spiral bound notebook with 26 blank monthly calenders so I can fill them in as I need them. I keep a pencil pocket for business cards, in the front and an accordion file for things that don't fit in the tabs. It always surprises doctors when they say they didn't receive a document from another office and I whip it out of the notebook. It's really a running joke in most offices. Office staff know it well and at our peds office they all brag about it to other parents. When Faith had a seizure at the office, last week, I left it at the front desk, while they called trying to get an appointment for us. The girl at the desk knew just where to go and filled in the appointment for me! This is probably the single most important piece of equipment that we use in our lives. When I change everything over, I just file away or box up the old records. If you don't have something like this, I highly recommend making one! They are INVALUABLE!






Wednesday, January 13, 2010

Stories...


Today, at therapy, I was approached by the head therapist. She asked me if I would be willing to write Faith's story with a focus on our experience with our therapy group. It seems that the head of the hospital is going to be speaking at a conference and wanted to have a few stories to share with them about families experiences with PTW. I was touched and honored. In the last few years we have often been asked to be subjects in photo shoots for the annual Camellia Ball (fundraiser for PTW) and also representatives at the ball. I enjoy doing this sort of thing because it gives me a chance to talk about Faith and our experiences. I am not normally a speaker or writer but when you are living with a force like Faith, you are infused with a passion that overcomes fear. I am excited about the opportunity and hoping that it will get some recognition focused on our therapists and their office. I leave you with photos from P.T., today, with Faith standing and reaching (A big deal!) I love how excited her therapist is!

Monday, January 11, 2010

Admitting IT...


All mothers worry about their children. They worry that they aren't eating enough, they worry that their children aren't growing tall enough or that they aren't fitting in at school. They worry that they aren't learning the right things fast enough or that they aren't potty trained when all the other kids are.

Since Faith was born all the normal things went out the window. I worried about growth but because she REALLY wasn't eating without being forced. I worried that she wasn't sitting up at one and a half and I worried that she wasn't using her hands like she should. We knew all those things were part of her diagnosis but the fear of the unknown is a hard thing to face especially with a special needs child. Most of these fears have subsided or been proven wrong or maybe been proven right but we learned to live with them.

I do have a secret fear that I don't normally share with.....well...anyone. It is something that I have not been able to overcome and it seems that the fear has gotten worse in the last 2 years. I hate to even put it in words......But I am admitting it, here, among friends who probably have dealt with similar fears so I know I am in good company.

I am terrified that we will find her in bed, not breathing... You know what I mean.

I know this is a painful subject for many of you as well as me....some have dealt with it in real life. As my best friend's mother did in July of 2007, she found her daughter, in her bed at home with her two babies still in their cribs, one morning that her husband was out of town. We all miss her terribly.....it has been so hard without her.
But this fear is a gripping fear, for me. When Faith was first born, her seizures presented as apneic episodes. Meaning she quit breathing and could not start again without CPR. As her seizures have increased in the last year, the fear has come creeping back into my head/heart. The seizures are different kinds with different presentations, some with blue spells that nearly gave me a heart attack~ Carl and I rarely go a few hours at night with out creeping in her room to check on her, even though we have a video monitor. I have noticed in the last two months or so that it has been hard for me to go in to her room. I have found myself asking Carl to go check on her, while I wait breathless....for him to say she is OK. If he hesitates or is too long coming out of her room, my heart starts racing.

I know a lot of people would say I was being irrational or overprotective or paranoid. And that may be the case...who knows. But it is a very real thing to me. She usually wakes around 4 or 5 and we put her in bed with us. Often I wake with her next to me certain that she is not breathing. I don't know how to get over this fear.....I know that GOD tells us not to fear but fear can be something that keeps you aware. And if you live with the reality of a special needs child it CAN be a reality you have to deal with. A reality that I have yet to successfully deal with.......
Is there anyone else out there dealing with this? How do you handle it?

A day in the life of........ M-O-M

This morning I hit the phone hard, before therapy. Trying to get a decent appointment for Faith at the epilepsy appointment, trying to reschedule a crappy appointment at Shriner's and get new decompression tubes for our new G tube...all of this before our first therapy at 10 am! Shriner's weren't at the phones...on to pediatrician, girl helping us was late today, so no luck there....decompression tubes ready, just drive an hour to pick them up (btw...I forgot to pick them up!)! About 10 am, we get a call from MUSC with an acceptable appointment....YES! Call ped's office to let them know...get to therapy...lunch with daddy...then on to our next therapy, an hour away! When my feet finally hit the front door of our house at 4:30, I still had to call Shriner's. So I put in the call and BAM, I hit the brick wall of the day! Our surgeon/doctor is only seeing CP patients on Wed from 12-3 pm. Which is our current therapy schedule. I hate to miss therapy b/c we have missed so much in the past few months, not to mention we now have to cancel on the 20th for the epilepsy center! The girl running the appointment desk was no help! She wouldn't work with me for anything until late March! So much for our 4 week follow up! I had to settle for an appointment with a doctor we've never met at the end of the month during a scoliosis clinic! Just a funny comment she made about what an important man said doctor is and how busy he is that he doesn't have time to see the CP kids any other times! I almost fell in the floor! I bet I could give Mr. Busy Man a run for his money!

Sunday, January 10, 2010

Adventures in Girl Scouting.....


This Saturday we had a cookie rally for the Girl Scouts, gearing up for the cookie season. Our entire troop was expecting to attend but in the end only 3 girls including Faith made it. It was the first rally that our county had ever had. They did an opening session with the cadets leading the children in some cookie chants and a former soldier who spoke about what girl scouts cookies mean to the troops, overseas. (Girl Scouts pack boxes of cookies to send to the troops, every year.) Then the children had to go around to different stations to learn about setting goals, selling etiquette, selling safety and recommending cookies. Faith, of course, was a little overwhelmed. She gets this way in large crowds...she kind of shuts down and is slow to respond to people. But she did enjoy one project...making cards to send with the cookies to the troops. She loves to play with crayons and this was right up her alley! Although her card was simple and I had to write in it for her, it's the thought that counts. I am sure it will make some soldier's day. At the end of the rally each of the children received a new patch for their uniform for attending.
Last night, I sat down and stitched all her patches that she has earned, so far. With most kids, they have to earn the front patches by learning the code, the g.s. law, etc. But since Faith can't do this yet, we have to focus on other areas. So we focus on participation in events b/c she CAN earn badges for that! She now has three on her uniform...a Juliette Low patch, a parade patch and a cookie rally patch. She was so proud of them once I got them sewn on, she kept signing "please" then her sign for "put it on". So here she is showing off her patches. It was sentimental for me because I was able to sew them for her and I was able to use thread that belonged to my grandmother to stitch it. The thread was part of the sewing basket that belonged to my Bamboo, that is a fascinating relic of the last 50 years. There is thread and ribbon and bastings as old as my father! I use her thread all the time and it's hard to believe that 30-40 yr old thread still holds well! This particular thread was purchased at TG and Y for 22 cents! I really enjoy using all of my Bamboo's things in my sewing, they remind me of her whenever I look at them. So Faith will have something that her mother sewed, that she earned, with thread that belonged to her great grandmother! This girl scouts thing has become a wonderful adventure for Faith and for me. She has made some wonderful friends....I have been able to see that she can be accepted in our community....We both have shared some good bonding time....and we will have something that we both can remember for the rest of our lives.

Saturday, January 9, 2010

Update to previous post

I got a response from the neuro, down in Charleston. He was quick to respond and I am happy for that part. I am so glad I did this b/c I was able to get info that I would not have otherwise gotten. He was very sympathetic but told me that his teaching schedule and travel commitments were too great to give us the time we were looking for. So he suggested another doctor who just joined the center. We had been offered an appointment with this doctor, yesterday but we could find no info on him so we said no. Now that I have his entire name and this doctor's suggestions I was able to find out that he was a past president of the American Epilepsy Society! GREAT! This may be just what we needed! I KNEW that going around the staff usually works or gets us valuable info! So he tells me that he will work with the nurse to get Faith in to see this doctor and get us some help. YESSSSSS...
In response to my friend, Katy about my confidence in the neurologists...Actually, I don't have great faith in any of these suckers but our current situation with our current neuro is terrible. In S.C. we are EXTREMELY limited in neuro.'s, like there are only 4 within 3 hours! And three of them are in one practice! My reasoning for hitting the other side of state in the epilepsy center is b/c we won't be able to leave the state and if we are going to have to travel we may as well travel to the best possible place in the state. Actually, from all of our past experiences with neuro's...they are overworked, unsympathetic, often cold and waaaaay too book smart for their own good or my daughter's, for that matter. When Faith got her tumor dx, I had come in for our regular office visit with my 10 yr old little sister, expecting nothing out of the ordinary. Said current doctor parades 2 students, a nurse and himself into the room and announces that they found a tumor! Just like that! Of course, I fell apart.....he left the room and let the nurse deal with me! How thoughtful and kind!
We haven't found one we are happy with yet! But we have to do something for these seizures and current guy isn't doing anything. So I am thinking if I can get my hands on this other guy's email address...I can give him a heads up on Faith and a little insight into her...then maybe it will turn on the compassion switch. At least, that's my best plan...so far.

Friday, January 8, 2010

This is surely what will put me in an early grave..

Monday I posted about our referral to the MUSC epilepsy center in Charleston. After some thinking, it seemed like a 3 pm appointment on a Friday was kind of late. So on Wed. I put in a call to them...turns out the appointment that we were driving 4+ hrs for was scheduled for 45 minutes! UH....N-O...not gonna cut it for this kid.
So, I began negotiating, trying to get an earlier appointment with more time and earlier in the week. No doin'! After much debate the receptionist told me that if our pediatrician called and asked to speak directly to the doctor that maybe he might work something out. Well, I called the pediatrician on Wed. and asked them to put in a call. Today, we went for a follow up appointment and found out that the call had never been made. So they got on it today and they got the same run around! The girl calling, a good friend of ours at the office, put in 5 different calls trying to wrangle a different arrangement and even after a request to talk directly with the doctor she never got through. They said that 45 minutes was the standard appointment for first timers and they only did them on two days, each week! After her 5th call, they offered an appointment with another doctor (who is new to the area) and not even listed on the epilepsy center's website! We said no, of course! As of 4pm, we are still no where closer to a resolution.
Some of you may not know about the MANY battles like this I have had in the past. Trying to get approval for things, visits with specialists out of our area...etc, etc, etc. I keep a special costume for this in our hall closet. It looks like a big bull..... you know..... for the china shop! Meaning, I don't give up or in very easily... actually NEVER! So, I started brainstorming and stumbled upon this doctor's email address! HA HA HA!!! I guess you can picture what I did next. Yup....VERY long email directly to him...begging for his help in my most sincere, desperate voice! We will see how this pans out......
I get so frustrated with bureaucracy! It seems like we have enough problems dealing with all the medical issues, insurance, state agencies but then every one else has to get in on the "pain in the butt" wagon, too! I have a very low tolerance for this kind of mess! If you are a doctor, out there, reading me.... think about your patients as individuals not just charts on your desk. Isn't that why you became a doctor? Especially for special needs children....their cases are NEVER ordinary and NEVER simple. FORTY-FIVE MINUTES AIN'T GONNA CUT IT, FOLKS.....

Thursday, January 7, 2010

Faith talks....

video

video

You will need to pause the music at the bottom of the blog...

This is video evidence of a miracle...our daughter talking! Carl has been working with her to be able to say her new age! AMAZING! Isn't she a doll baby? Hey, she's got rhythm, too...always has! What an amazing little girl she is....

Tuesday, January 5, 2010

HAPPY SIXTH BIRTHDAY, LITTLE ANGEL...


HAPPY BIRTHDAY...MY ROCKIN', AWESOME GIFT FROM GOD!
Six years ago, I was preparing for an induction....
Six years ago, I was ready to meet my new daughter...
Six years ago, I was putting together a crib, by myself, the night before going in to the hospital...
Six years ago, I was excited, nervous, scared, joyous...
Six years ago, I was ignorant...

Six years ago, I was packing my bag, getting ready to head to the hospital the next morning. I didn't know what to expect but I was ready to get things over with and meet HER. This little ball that had been my constant companion for 9 months. I KNEW her, already in my heart. I felt her move, kick and knew which side she liked me to sleep on. I KNEW what she would look like. Months before, I had found a Pampers ad in a baby magazine with a picture of a toddler, who I was sure looked just like what Faith would look like!(I still have this picture and she does favor that little girl, a lot!) After all the uncertainty, I was convinced that she was going to be fine and we would be bringing a baby home in just days. I was also NOT having a C-section!

Then labor happened and she was turned wrong and I DID have a C-section. Something went wrong and she got a blood clot and had a stroke before anyone knew what was happening. Then she was moved 2 hours away and I was left behind to recover, by myself.
Nothing I imagined happened...I missed all the bonding, first bath, diapering and all the big firsts...intubation's, iv's, MRI's, EEG's, CT scans, spinal taps. Regardless of the circumstances surrounding her birth...she made it here, although not in the ways I imagined.

After all the things that have happened in her six years I have this wonderful little girl who inspires me every day. I am thankful for all the lessons I have learned and for her very life. I used to ask "why her, why us?" but I don't anymore. I say "We were given a miraculous, once in a lifetime gift." I never thought I could come to this point, after all it has been six years! But guilt, frustration, anger and furry have given way to acceptance and great pride.

She has overcome so many awful obstacles...WE have overcome so many, ourselves. She CAN communicate...she CAN move...she CAN make you laugh like crazy...she CAN understand most of what you say...she CAN weasel her way into any one's heart in just minutes!

I am so blessed to be her mother! I am lucky to have witnessed a great miracle. I am grateful for every moment she is on this earth and I pray that she continues to be for many, many years. I love this child more than anything I could ever imagine. When people look at us, as I push her wheelchair or carry her to her car seat, in pity... I just smirk..they don't know anything! They probably haven't ever even seen a miracle before!

I can't believe it's been six years! There were days... still are... when I wasn't sure she would make it to five and now here we stand...old enough to begin school in the fall.

Faith, you are a funky, special, one of a kind little girl who has changes so many people's lives. I love you so much, and I wouldn't change you for anything! You are the light in our lives and my reason for living! I am incredibly thrilled with every wonderful thing you have accomplished.

BTW, this is a small celebration for me...it's my 100th post. Thanks to all my friends who continue to read as I pour out a little of our lives onto the world.