My child eats!

This is Faith, at speach therapy, on Wed.! Actually eating a DumDum sucker! Wouldn't have believed it if I didn't see it with my own two eyes! Just look at the sheer joy on her face. A candy addict in the making (not to mention a genetic pre disposition on daddy's side)! Isn't she stinkin' cute? After all these years of food refusal, I never thought I would see the day when she would hold candy and eat it. I remember when I was pregnant saying "my child will never eat candy!" what a fool I was! I would feed her gold crusted cat turds if she would eat them! So here's to C-A-N-D-Y! HAPPY HALLOWEEN! Don't forget to pause the music at the bottom so you can hear her say CANDY! (Thanks Dr. Boucher!)

PS. Don't forget about my contest for Miracle Veterans.....

CALLING ALL MIRACLE VETERANS......

Ok everyone... A few posts ago, I mentioned, in passing, that Carl and I had become MIRACLE VETERANS. After witnessing, experiencing, suffering and rejoicing in all our precious daughter has overcome in her life.....we have become MIRACLE VETERANS. Not a club that most parents belong to, but one I am proud to be a part of. So several of my bloggy friends (Katy and Amy, thanks, guys!) have inspired me to use this phrase as a motto....
I was rummaging through a craft box, tonight, and found a ceramic plaque that just called to me.
So I sat down and gave it a new life. I am calling on all of you fellow MIRACLE VETERANS out there to tell me about your biggest and most precious miracle experience in your child's life. The thing that defines you or reminds you of how precious life is. This is my first time doing a contest so be patient with me...

Write a post, telling your story and how you have become a MIRACLE VETERAN, then come back here and leave a comment. I will read each person's post and choose a winner. The winner gets this cute little plaque to hang in their MIRACLE"S room!

The plaque is painted green with purple lettering and polka dots. So it would fit in a boy or girls room. It also has neat beading along the hanger, at the top. I will be accepting posts until Monday, November 2, 2009. I can't wait to read every one's posts and hope we can all be inspired by other's incredible stories! I will also be linking your posts back in my blog after you post.

Amendment: You can tell any special story about something your child and you have gone through. It doesn't have to be "THE" story. It can be a small story like AMBER'S, a touching piece on her experience with little Jacob, in the hospital.

Girls Scouts

So Faith's second Girl Scouts meeting was Thurs. and it was so great! I got to introduce Faith and explain that she used sign language to communicate. I even showed the children some basic signs and they all tried them! Towards the end, two older girls came over and one girl said that she had a deaf family member who used sign language and showed me some she knew. They were so sweet and they played with Faith. I asked them if I could take a picture of them with Faith and before I knew it, the whole group was gathered around Faith's chair and we got the pic! I actually felt like they accepted Faith and that she had made some of her first friends, outside of our family and close circles. She charmed them with her smile and I sort of bribed them with some Halloween candy. One little girl said she had an older sister named Faith and several of the girls helped Faith when her beaded bracelet broke and spilled all over the floor. I showed them how to sign their own names and they all excitedly tried. I was so relieved and thrilled that they were kind to her and am praying that she will be permanently accepted.

SPOOKY TIME

I love Halloween time. The weather finally starts to get cooler in South Carolina and the leaves begin to change. If you remember back in Aug., I posted about our wierd, random pumpkin vine that appeared in our front yard. Well the vine grew and grew and grew, at last measure it was over 25 feet! It was huge! Well the vine finally died after the cold spurt we had last week and we picked our punkin! It wasn't big and certainly not magnificent but we grew it ourselves and we are proud of it! If you look at the pic on the top it's the little on in the wreath. Faith just loves it! Also Faith lost her third tooth, on Tues.! She seems to be loosing them all in a row across the bottom. We had plans to go up to Cade's Cove, Tenn., last weekend but my mom got sick and wasn't able to make it. So we are praying for chance to go this weekend. Faith has started Girl Scouts, her second meeting is today. I am hoping for better results than last week and I am prepared to do a little bribing (we made halloween candy bags for each of the girls) in hopes that they will be more likely to come over and interact with Faith.

Boo

I have mentioned that Faith is going to be Laura Ingalls for Halloween. I am excited about her costume, much of which I sewed, myself. So I was wondering about all of my bloggy friends out there and what your kids (or you) are going to be for the big day? This is the first yr that Faith has been interested in dressing up, she gets so excited when she sees her costume and actually came over, the other day, and snatched it off the table, as I was sewing the apron. SO cute! We had plans to go to the BOO AT THE ZOO, last Fri. but we drove over an hr to get there and the zoo had cancelled it for the members that night. We were really bummed out! On the upside, she did get a free pumpkin from the local grocery store! She is so obsessed with pumpkins! I think we are going to try to go to the next town over and let her trick or treat downtown, so we don't have to unload her chair a hundred times that night. We got her a little basket for authenticity, instead of a candy bag. This is the first yr that my baby sister won't be going with Faith, so I am a little anxious about her going with just us. Ashley was always good at bridging the gap between Faith and other people.

So tell me what your plans are, I am gathering good ideas. Look foward to hearing from everyone!

A great book for all you out there with kids with seizures

I have recently discovered a great program that I just had to tell you all about. In South Carolina we have a lending library at the USC School of Medicine Center for Disability Resource Library in Columbia, SC. http://uscm.med.edu/CDR/ . This program lends out books, videos, research and children's books to anyone interested in disabilities, special needs or other medical problems. You can visit their website and choose the books you want to borrow. Anyone in the country can borrow from them. If you live outside of SC, they will ship the books to you but you are responsible for the return shipping. I just got my first box this week, five big books and the shipping was 4 bucks. In SC, residents can borrow books and the library sends a return postage mailer sticker, so you don't have to pay to send the books back. Anyway, it's a fantastic resource for all of us out there who may need access to specific, detailed medical info about our children that you can't find most places. They have books on most all medical subjects on disabilities.
I borrowed a bunch on CP, some kids disability books and a book on seizures in children. Now I highly recommend this book to anyone whose child has seizures. It's called Seizures and Epilepsy in Childhood A Guide by Freeman, Vining and Pillas. This is the first book on pediatric epilepsy that I have read and it is very informative. Although it was published in 2001, it is not dated and has tremendous info for parents like us. They discuss meds, surgeries, parenting and other relevant topics. I read this book in about 3 days and have felt so much better since I did. I am so excited about this program b/c we have such limited resources where we live and I can't keep buying books brand new. Check it out, if you can!

Added note: I did some looking around and alot of other states have disability resource libraries. If you go to the website I listed at the top you will be taken to their home page. Scroll down to the bottom and there is a link to find other libraries. You should definatly look into it!

Well, since....

Well, since I haven't been getting much response from my posts about the simple things I am going to post some about my days with Faith and the treasures that I hold in my heart.

Most days we have doctors appointments or therapies. I feel like we are always on the road! I shuttle her from office to therapy to labs to hospitals. I can't remember the last time I just got in my car and drove somewhere just for the fun of it! We may have one day a week when we get to sit at home and "do" nothin'! I used to hate staying at home but as Faith has changed most things in my life, she has changed this too! I treasure it now.
On these rare days we will sleep in a little to like 8:30 am (gasp!) well, mostly I sleep and she abuses me with pillows, smothers me with the blankets and throws her beloved bears at the dog, sleeping on the floor! It's a riot, I really should video it! When we get up, I will usually turn on her favorite TV show (the only one she watches) It's Me or the Dog . She loves to comment on different dogs and I love to watch her when she sees a new one! "Ahna, Ahna, Ahna" (in increased pitch and volume) then she will gleefully point at the TV, when I acknowledge her.
We usually will read a few books (over and over and over again) and she will often collect little trinkets and cart them around the house. At these moments, I think how blessed we are to have our girl here with us, although battle scarred. She brings us joy in little things like closing us in the utility room and sitting in front of the door so we can't get out then opening the door and peaking around the corner to see if we are still there! SO CUTE!
We also like to practice coloring (scribbling) with the best invention of all times, Color wonder markers and paints. She loves to color but she loves to change markers even more! So she will scribble one or two lines then chuck her marker at the marker box (Faithspeak for get me another color, please!) She recently learned about pumpkins (by accident) so we have been fostering an interest in SPOOKY things. So I bought her some orange pumpkins like they put on walls at schools and we have been scribbling our hearts out, decorating the whole house with them!
We spend a lot of time together but she also plays independently. I have always let her play by herself b/c she works on things, more patiently, that will help her as she grows. Her favorite playtime thing to do is play in front of the mirror. You would think she was a diva or something! LOL! But actually this is therapeutic play! She will sit in front of it and take off her pants then pull them back on, sometimes getting her two legs into one hole and looking like a mermaid! She practices these movements over and over in different positions like sitting, lying down, on her knees. And it makes her so happy! I believe that this kind of play is crucial to her development and has taught her patience, something that cannot always be taught to children like Faith by another person.
I hold each of these days in my heart, in a special file marked Faith days. They are treasured in my heart because it's during these times that I can see how much she is really like other kids.

The Simple Things (part 2)

Here I am again, thinking about the simple life. I was thinking about my grandmother and some of the wonderful stories that she used to tell me about her life, before she was a grandmother.

As I said before, she grew up on the prairies of Kansas, the daughter of a farm implement store owner and teacher. She learned to drive on the fields from her dad in an old 30's model Ford truck. My grandmother drove a truck! What a hoot! She had one older sister and was the happiest person I ever met!
This story is about her, as a child, when she would visit her grandmother in the old family farmhouse near Neodesha, Ks. Back then, there was no such thing as AIR CONDITIONING (gasp, what?) So in the summer it was oppressively hot, too hot to sleep in the house, even with the windows open. So when they would come visit her grandmother (she and her sister, Francis) they would hang hammocks on the porch of the farm house and sleep in them. Now this was in the late 20's early 30's. Way before they had neighbors or street lights or running water in the house! Can you believe people lived through all that! LOL!
She used to tell me that she would lie there in her hammock and listen to the coyotes, howling on the prairie, close enough to make her hair stand on edge! She said it was exciting but frightening at the same time! I can still see the sparkle in her eye as I heard the story, no matter how many times. Now, how many of you have slept on hammocks out on the prairie, without running water or air or washing machines and coyotes just out of sight? I sure haven't!
I used to imagine being her when I was a kid, fascinated by the simplicity and innocence that she enjoyed as a child. It makes me think about some of the things we should be doing for Faith, to give her those types of memories. We aren't at the point where we can take her camping yet but I have another idea. This weekend we are going to Cade's Cove, Tenn., a beautiful part of the Great Smokey Mts., where simple ways are still celebrated and honored. Pioneer ways are recreated and the homes that people lived in there are still there. My mom is coming to visit for the weekend and we are spending the night just outside the park in Gatlinburg. So we are planning a NICE picnic to take down there. We are going to lay a blanket out in a field and let Faith see nature and all it's beauty. I am so excited and hopeful that she will enjoy it! I pray that we can give her some wonderful memories out in the crisp, fall air.

The Simple Things (part 1)

I have always been drawn to the simpler things of life. I want our lives to be happy, loving, simple (as possible) and innocent. Since Faith was born these things have become so important to me. I want to protect her fragile life in whatever ways we can.
That said, I am drawn to thoughts of my grandmother and her life and how she lived. I remember her childhood stories of growing up on the prairies of Kansas. It also makes me think of how those simpler times were achieved. How did children stay innocent and how did parents stay together and how did families survive through difficult times?
I remember that my grandmother used to tell me about how she conducted herself and her marriage and her parenting styles. She never argued with my grandfather in front of her children or other people (I really need to work on this!) She always wrote thank you notes and kept detailed gift records at Christmas. (I really need to work on this too!) She always disciplined with love and if the children needed spanking on her watch then she did it and never threatened them. I never felt like she was mad at me, even if I screwed up. Maybe disappointed but never angry! How did she do that?

I think we have gotten away from so many of these VITAL things as a nation and as families. We have become so focused on the ways of the world that we have lost our identity. I yearn for a simple way of life, like my grandmother used to talk about. Families together, doing their daily routines, loving each other and striving to do the right things for their families and others. We have tried to implement many of these things in our daily lives. They give me meaning and make me feel like we are giving Faith a stable, loving home. One that she can always feel safe and happy in, no matter what her physical challenges are.

One thing that we do is spend our free time together. Our weekends are always filled with little trips and adventures, we get out and do fun, simple things like picnics, walking trails and festivals. We enjoy spending time together as a family.

I am trying to sort all of this out in my own mind and reach for this simpler life. I will be posting some more about how things have changed and how we might get back to simpl(er) living.

I would love to hear some stories about your attempts to simplify your family's life and what things have worked for you.

I didn't know my own strength....

I can still remember lying on the operating table as the doctors cut Faith from my womb. Freezing cold, my teeth chattering. My last moments before becoming a MOTHER, so clear. Then all the bad things happened, a blur of bad memories and heartache. I hardly considered the chances of something going wrong with my pregnancy. I certainly never gave any thought to becoming a mother with a special needs child. Before all this happened, I would have naively classified myself as a strong person. I had struggled through a difficult childhood and come out with quite a few scars but what I thought was stronger. (In hindsight, I believe that my childhood was preparing me for my role as Faith's mother..)
Then SHE came and rocked out world, FOREVER! We were given terrible news, our child was deathly ill. She could EVEN die! They performed CPR on her and brought her back to us although never the same. I remember clearly thinking, trying to wrap my mind around what was going on and if I could just DO something we could make her better! I went into hyper mode, over analysing every decision made for Faith. I walked, on my own, out of the hospital one day after her birth, never taking a single dose of prescribed medication after discharge, despite a traumatic Cesarean! I quickly became SUPER MOM. Rarely sleeping, documenting every tiny detail of her life medically, going from doctor to doctor, therapy to therapy, compiling mass quantities of medical documents and carrying them everywhere. I made lists for emergencies, back up lists were posted on the insides of our cabinets. I felt like if I just did enough things and did them right, then she would be ok. ( I still often feel this way..) I was extremely protective over her, rarely letting people hold her and becoming IRATE if someone touched her without sanitizing themselves. (I still am often this way, too!) I became the LIONESS, as I am often referred to in our family! I was/am ferocious and hyper vigilant.
Now many of you may have gone through some of these same feelings, for a short time or long time, like me. Often I am chastised by well meaning friends and family for focusing too much on her and not "letting go" of her, or my favorite one, "you're gonna wear yourself out!". All insulting to me, MOM to ONE BIG MIRACLE who almost died! So here is my rationale....
I feel so blessed to have been given this opportunity, to see my daughter live, to witness so many miracles, to wake every morning so far and see my daughter's smile! Now how can I turn my back on that responsibly? It is SO sobering to go through the things we have and I can't just carry on like everyone else! How can I be a normal mom, when MY child almost didn't live! She doesn't talk and relies on me and Carl for everything. I feel a HUGE obligation to PROTECT my child and be her DEFENDER and CHEERLEADER. If I am not vigilant, who WILL be? If I don't ROAR at the doctors, who will? If I fall down on the job, who will care for her and keep her safe? There are too many awful people/things in this world. I am not angry about this responsibility, on the contrary! I am honored and thrilled at the opportunity to be there for our daughter! So many parents never get that chance. I am proud to say that I am the LIONESS!
I never knew that I had this internal fortitude, until she plopped in my lap! I didn't know that I could live without so little sleep or without shaving my legs for so long! I didn't know that I could LOVE someone SO much or care so little about myself! I didn't know that I could clean up so much puke or learn so many medical terms. ( I actually had a practicing Physical therapy student ask me if I was in the medical field, a few weeks ago. I almost laughed her out of the office!) I didn't know that I could lift a five yr old a hundred times a day or fold a wheelchair in world record timing! I didn't know that I could become such an advocate or that I would be feared by so many unpracticed plebotomists (blood collectors)! I never knew that I could be so certain of ANYTHING IN MY LIFE! I didn't know my own strength.........

BUT I AM GLAD I DO NOW!

AND SO THANKFUL!

Alas... more seizures

Well, here we are again.... Friday morning, Faith had another bad seizure. Almost exactly 24 hrs after her last one. This one lasted over 20 minutes. It was very traumatic and we had to use the Valium after she started turning purple around her mouth. It was not her typical style, either, it seemed like several different ones all rolled into one. The weirdest part was towards the end, she raised both hands up in the air and shook them over and over again. So scary. We packed ourselves up as soon as she had stopped seizing and headed the hour and a half to her neuro office. Of course, we had no appointment and her neuro was out of town and it was Friday, which makes for a bad combination of factors and experiences. We had to see a fill in doctor w/ whom we had never met and she and a bunch of others debated about what to do with Faith... The final call was..... Urinalysis, CBC blood panel, CT scan of the brain. So we left the neuro at 10:15 am and didn't leave the hospital until almost 4pm! We got the results of her blood work, normal and the initial results of urinalysis, normal. We are still waiting for the CT scan.
They prescribed Klonopin for her, over the weekend. We wrestled with the decision to give her this medicine b/c it does have an interaction with tegretol and it can cause Central Nervous System Depression in children, especially with developmentally delayed children. After an after hrs call to the on call dr, she convinced us to try it. So we gave it to her last night, and she did sleep and did not have any more seizures but when she woke this morning, she was very unsteady, she kept falling over and she was having trouble doing things like picking up toys. It seemed to wear off after she had been up for a while but we decided against giving it to her during the day, today. I was afraid that she might hurt herself. We also noticed a very distinct personality change with her, today. She is normally happy go lucky, but today we saw her hitting things and crying and fussing and throwing things, too! Very out of character for her!
We have to call the neuro on Monday to see what our reg. dr wants us to do, I am thinking he is going to say EEG and MRI of the brain. Both of which, I DREAD!
We are all exhausted and stressed out, right now. We could use some prayers....

Seizures and wheelchairs

This morning Faith had a really bad seizure, about 5 minutes long. This is her first partial complex since Feb 17th. She had wakened up about 5:30 am and Carl had put her in bed with us. Then at a few minutes after 6 am, he woke me up saying that she was seizing. We started timing it and it lasted almost 6 minutes. I was so scared! We keep Valium in the house, to use if her seizures last more than 3 minutes, but after 3 minutes I could tell that it was starting to get better. This was her typical kind, affecting her left side, her leg, arm, eyes and mouth all twitching rapidly. Slowly her leg stopped, then her arm then her eyes and I knew it was going away. So we didn't dose her with the Valium b/c it will cause her to sleep for like a day, no joke! Her last dose of it, she slept for 28 hrs! Scared us to death!

I am sure that any of you whose children suffer with epilepsy, know what I am talking about when I say it is the most out of control I ever feel! Anyway, after 5 or so minutes, all of a sudden she sneezed and just sat up, looking around! It was so weird! She didn't appear to know anything had happened and seemed fine. We "tested" her on a range of subject like pointing to us, the cat, dog, giving hugs etc and she passed everything. She is not like most people with epilepsy, she never sleeps after a seizure (except with Valium). She went all day like normal, a bit grouchy but normal for the most part. I watched her like a hawk, though! We called the neuro and they reported that her Tegretol levels that were checked last wk were w/i normal range but on the low side of normal, 6.8. They said it was better than usual for her but we should go up, to hopefully ward any more off. So up we go! Right now, we get a huge monthly dose of Tegretol, so now we are going to be the largest official Tegretol clearing house in the eastern United States! LOL!!

Anyway, Faith got signed up for Girl Scouts, today. She is going to be a daisy! I am hoping to get her exposed to other little girls her age who are typically developing. Their first meeting is next Thursday.

BTW: Thanks to Ellen over at TO THE MAX for the Lemonade Blog Award! I will try to figure out how to link it up in the next day or so!

I am posting a picture of Faith in her super cool new wheelchair. And check out the bottom of my blog page for a short video of her and her cousin, playing.