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. Crap....now 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!

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.

DUH?

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.

Interesting.

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!

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!

Preparations and Ipad update...

So we are preparing for another trip to the coast in a couple of weeks, to have our second appointment at the Epilepsy Center in Charleston. I think it is a safe assumption to make that our choice to go down there has been a great thing! When they wanted to start Faith on a second seizure med. I was sceptical that she would do well. But since January 22, she has only had two brief seizures. So I guess that's proof positive! I am thrilled and actually feel like things are coming back to "normal" a little....but I always keep my guard up, in the background. Now we have another decision to make with what we are going to do with our current neurologist set up. We have our local neurologist, whom I am NOT happy with, and now the new one in Chucktown. I think we could continue to see both because the epilepsy center is a specialty clinic and on the other side of the state but I don't really want to. I would like to just transfer everything down there and just go there for all our treatments. But it's a little risky because it's so far and if we need MRI's, EEG's or anything else....I think we would have to drive down. I think it's the best choice since the team in Charleston genuinely seem to care about what happens to Faith...and in my book that is the most important thing. I was thinking of asking them if they could wrangle tests to be done, here at home. Then that would alleviate all the problems except the long drive.
On to Ipad issues...
We placed our order, yesterday for the Ipad 16BG with wi-fi and 3G along with an SD converter so we can download pictures. I am so excited to get this in Faith's hands, that I can hardly stand it! I have been getting all kinds of emails with links to educations and aug. com apps and I think this thing will be a HUGE help when we start homeschooling in a few months! We have been talking about it a lot to Faith and I think she even recognizes the name now, LOL! When I spoke with the rep at Apple she seemed confident that they would be shipping these out this month. I was kind of worried that they would be back ordered and we would be waiting for a long time. She said that Apple was pretty consistent with release dates and if anything they may push it back a few days or a week. We decided not to get the extended Apple plan that was $99 since it does not cover human error...so we are going to go with a private insurance policy called Square Trade who provides Ipad warranties for just $95 for two years and they cover accidents and manufacturer defects. We felt like it was vital to have some additional protection since Faith likes to chuck things! So now we just have to wait........

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~!

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!

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.

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!

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.....

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!