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?

Christmas Pictures...

Christmas was a crazy day, dealing with aftermath of the fire, my sister and her family, my father and my step father. All of our original plans and traditions were thrown out the window... I was coerced into making Christmas dinner for everyone, which is not on my top 10 list! I don't mind doing it for a few folks but I am not the hostess type. I get so stressed out and worry my head off. The fire dept donated funds for me to put together Christmas dinner, so I felt obligated to do so. We had our house filled up with people and it was mayhem! Trash, toys and toddlers running a muck! It didn't really feel like Christmas. Faith did enjoy her gifts...I think her favorite was the $1.00 horse calender from Dollar Tree. She has carted that thing everywhere! LOL! But she also enjoyed the dvd player for the car! She is now excited to get in the car and go. Compared to her recent struggling and fighting to be put in her car seat. She is now thrilled to go! She has been rolling down the road to Veggie Tales, Baby Einstein and animal dvd's. Which reminds me... I need to hit the thrift stores for some more! I can barely stand them after 2 or 3 times!

Now I am trying to prepare for Faith's 6th birthday party, coming up on Saturday. It is always way to close to Christmas and sneaks up on me every year, despite my best efforts! We do it up big every year, as a way to get everyone together and show our appreciation for all the support we have received and to celebrate Faith making it thru another year! Well, this year, I just don't have it together. One heck of a week coming up.....

tests and other junk...

I feel so slack, the last week, I have hardly posted at all! It has been more than chaotic around here! I barely remember having Christmas! There has been so much mayhem and unrest around here, I feel like I am barely hanging on. It has been so sad to see my step dad dealing with all the loss and destruction and then Christmas and all on top! It just breaks your heart.
On top of all that we have been trying to get some answers with Faith's seizures. She had her MRI on Fri the 18th and per the Neurologist, her tumor seems about the same- no significant changes. Today, she had her EEG. It was a sleep deprived one, so we all only got about 5 hrs of sleep, then therapy, then an hour + drive to the EEG, then home. We were gone for 11 hours, today! We were able to meet with the doctor, after her test, to hear what they found. Of course, we knew that it would be abnormal- always have been.
But he did say no significant changes, which is good. He did tell us some different things that we haven't heard before. He said that there were a lot of misfiring going on in the back of both sides of her brain and that there was a lot of increased misfiring when she was drowsy- going to or just waking from sleep. I don't know why I hadn't really considered it before but it makes sense, since most of her seizures occur in the very early morning hours- around 3-7 am. He had said, last week, that some children have increased seizures as their brain matures, as they age. So I asked if they better when they get older. Of course, I didn't get a straight answer. Just generalizations, some do some don't. He said that, as we knew, that children who are compromised, neurologically and have a lot of abnormalities are just prone to these problems. That there is no medicine that is 100% that nothing will fix what is happening in her brain. Of course, we knew all of this, already. It's just frustrating.... We just know so little about the brain and especially hers and what exactly is going on and what exactly did happen and why. I just live with so much anxiety about the seizures. I always feel like I am on high alert! I don't know how I am supposed to live like this. I have read a lot about seizures and done a good bit of research but it doesn't really make me feel better. And our conversation with good ole' Neurologist of the year, didn't do much in that department...We did go up on her Tegretol levels, even though we are still waiting for her last blood level check. My feeling is that, before long she is going to max out her levels and we will be forced to delve into other medications.

Merry Christmas to all my blog friends..

TO ALL MY WONDERFUL FRIENDS OUT THERE IN BLOGGIE LAND....

MERRY CHRISTMAS AND MAY YOU HAVE A WONDERFUL HOLIDAY AND NEW YEAR!

Remember to bless your children and family. May GOD bless you all! I am so blessed to know each and every one of you and I pray that you and your children and families are all safe and happy!

With Love,
Candace