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.

seizures S-U-C-K......

I know that this seems to be a reoccurring theme, in my blogging, lately. Faith came down with something over the weekend, as did I. By this morning, I was phoning the pediatrician, for an appointment. She hardly slept all weekend and she has a terrible cough. No fever, but runny nose and her eyes look terrible. Last night, she woke around 9 pm, after hitting the bed around 5:30 pm. After we got her up and checked her over, no sooner had her head hit the pillow then she started seizing. It was a brief one, for her, only about 45 seconds. Needless to say she spent the rest of the night in our bed. So, we made it out to the doctor- got there early and thankfully were sent back to a room to wait so that we wouldn't expose her to anything else. Now, I came prepared to hit up the doctor for a referral to the epilepsy center in Charleston, with printouts of the program, all the doctors, and a list of recommendations for referring children with epilepsy. Our wonderful doctor, didn't even need to read any of it, Absolutely No Problem, he says! By the way, she has an ear infection (her second one, ever) and something in her chest. Another antibiotic added to the list. So, there I stand at the check out desk, while receptionist is calling MUSC to try to get us in, I just take my eyes off Faith for a moment. Then I look down and she is seizing again! I grab her up and the girl at the front desk sees her and calls back to the back for the doctor. By the time he makes it to us, she is coming around but she had this leg shaking thing on her right leg. She did get better and they didn't have to treat her but I am glad that they were able to see it for themselves. When I got back up to the front, they had wrangled an appointment for one of the specialists on Feb. 19! I was in shock! So quickly! Not saying that the seizure was a good thing, but hey, you never get appointments that quickly with sub specialties! I was a wreck... sobbing and shaking. I had almost all the nurses and office staff crying in the room with me. They gathered around me and prayed for GOD to heal her and give us peace. Such wonderful folks..I love our pediatrician and all his staff! So, now we prepare for our great trip to Charleston to see if they can offer us some hope and help. I would still love to hear from anyone else who has had experience with an epilepsy center!

Birthday party.....

Today, we celebrated Faith's sixth birthday. Her birthday isn't until Thursday but we had the party today. Faith and I were not feeling the best, I think we may be coming down with colds. So she seemed really weak and her eyes looked bad. But we had a good turn out and so many wonderful people came. Every year, we throw a big shin dig to get everyone together, in Faith's life. We usually have around 50 people. This year's theme was horses since this is her latest obsession. I cheated and used all her horse toys as decorations...cheapskate that I am! We always have a matting for a 8x10 frame out so all our guests can leave messages for her. Then we decorate with framed pictures of her, over the last year. I also do a big scrapbook, highlighting major events in her last year. This year, we were honored to have a couple of Faith's girl scout troop attend as well as her troop leader. This is such a big deal because these girls are Faith's first friends... outside of our family and close friends. Real friends... and those of you out there with kids like Faith, know... THAT IS A BIG DEAL! ACCEPTANCE.... SUCH A SWEET WORD!

In the past, we have asked people to donate gifts/money to charitable organizations or to big needs but this year we let her have some presents. She actually enjoyed opening them with help from her girl scout friends and all her cousins. Little vultures! LOL! Now I have a wonderful story about one of her girl scouts friend's father. This little girl LOVES Faith...I mean LOVES her! She is crazy about her and just mothers her like crazy. She is in 4th grade. She evens wipes Faith's mouth, when she drools...now how many little girl's would do that? So she came to the party and her dad tells me that he needs to run to town and can she stay with us...of course, we say. So he leaves and is gone for a while, then returns during present time carrying this huge blanket covered...thing! Well, it turns out he had made this beautiful wooden horse by hand! It was a work of art! Big enough for her to sit on and have room to grow! This is so cool because she loves to sit on things like this but she is too big for most now. It was so intricate and painted so beautifully! Lovingly! This big, strong man holding little Faith up on this awesome horse and tears welling up in his eyes! Such a wonderful blessing. He said he was so touched by Faith and he wanted to take one of her yearly update pages to Sunday school for the children he teaches! It stole the show! Nothing could top that horse! She was in love with it and so was everyone else! It was the best gift Faith ever received and will have a treasured spot in our home for the rest of our lives! To see this man, whom I have never met, just shaken up by our daughter...priceless! What a gift! She also received lots of other cool horse toys and some gift cards too. It was a wonderful party and meant so much to us to see all the people who have touched and been touched by FAITH!

ARG..more seizures...and frickin' g- tube problems...

This is Faith's old button...Isn't that a pretty site?

Two days ago, I noticed some leaking around Faith's g-tube site. I tried flushing it and couldn't identify the leak. I knew it was somewhere in the tube itself and not the valve. So I made an appointment with the surgeon to get it changed. Now, Faith's is a Genie and if there is a leak in the tube then the whole thing must come out and it does not have a balloon. So, it means jerking that thing out! Well, I get up in the morning ready to go to Greenville, then Faith has another big seizure! This one lasted a total of about 5 minutes even after the Valium. So, she was drugged up and had to make the 1 + hour trip to the surgeon's. When I get there, the nurse (who I have had some not so nice run-ins with) informs me that they stopped making Faith's type of tube! UH, WHAT? EXCUSE ME? Obsolete, say the manufacturers! Which is crazy because it is so easy and convenient! So, nurse tells me that we either have to try to last as long as we can with her old one or change to a new style.



LET ME STOP HERE AND SAY JUST ONE THING... I DO NOT HANDLE CHANGE WELL!



So, I sit down and have a good cry and then call Hubby and text him some pics of the different ones we have to choose from. I grilled the nurse about different features and what parents usually choose. I was not a happy camper! I ended up choosing an AMT mini ONE Low Profile Button. It was the closest one to her original one.. but it has a cover on it...which we HATE... and it has this stupid little decompression tube that must be locked into the tube and then rotated. (Very inconvenient for night feedings!) Not to mention that the tube itself is smaller and thus the feeds go MUCH slower! NOT HAPPY AT ALL! But what could we do? Then this morning, I see some sort of leaking in the same spot as before the tube change. Don't know what this could be...Never seen it in 5 years.

So, it has once again, been chaos in the Hudson house! Now, I have a question for all of you out there. We have had it with our neurologist- treating her seizures- so we are exploring an epilepsy center at MUSC in Charleston. My question is have any of you had children treated at an epilepsy center and what were your experiences?