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!

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.

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.

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.....

Faith talks....

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....

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.