Wednesday, April 27, 2011

maybe next time-

So I sat down ready to write all about our visit with Dr. Blount but I can't. My heart is so heavy, not only from the visit and actually having surgery scheduled, but the exhausting day of devastating weather. For my readers that I haven't met - we are only 60 miles from Tuscaloosa, Alabama where a mile-wide tornado struck today which damaged so much and caused great loss of life - the kids and I are there at least once a week - we have MANY friends and family in that area - and that is where Brandon is working at this time. Parts of this dear city are just gone - they simply don't exist anymore. Several of my family were actually in the path but are ok - there are others we haven't been able to reach yet. So please understand that I just can't give details on Camilla's situation at this moment, not when my heart is aching for so many. I will list the majors below - more to follow later

pre-op testing - May 16th
surgery - May 17th
COMPLETE Corpus Callosotomy

Good night and God Bless!

Monday, April 18, 2011

thoughts of a mom-

So here's the final story I'm posting (see post below for explanation) - medical update to follow soon


Thoughts of a Mom
Maureen K. Higgins

Many of you, I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience; experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters".

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We are initiated in neurologist' s offices and NICU units, in obstetrician' s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common.

One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate those mother's whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while disipline was advocated by the person behind us in line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest freinds can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedsides and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doos on Halloween, and we have found ways to help our deaf children form the words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of or family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds.

We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, ever stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

the special mother-

So - I have NO intention of turning this blog into a cryfest with each post but since I received several messages and emails from 'special moms' after the Welcome to Holland post I thought I would share two other stories that were given to me somewhere along this journey with Camilla - here's the first - and before reading I want ALL of you 'special moms' to know how much I care for, respect and pray for you all DAILY


The Special Mother

by Erma Bombeck



Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Friday, April 15, 2011

praise

Trying to get some videos posted - this one is of a skill that she acquired several months ago but she has managed to retain it which doesn't always happen - this video shows her following directions and if you think about all that she does and how quickly she is able to process this it is such an achievement for her - she listens, takes the box, goes to the cabinet, opens the door, throws the box in the trash, closes the door and comes back to me, and even gives me 'five' after all that (and then picks her nose which was not part of the directions lol) - such a thought process for her - we are so happy about this - after practicing this skill MANY TIMES she is now my 'big helper' while cooking dinner each night
video

Wednesday, April 13, 2011

welcome to holland-

Someone shared this with me soon after Camilla's initial diagnosis and it is something I re-read almost every week-

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, April 5, 2011

wow and thanks-

I just checked the stats for my blog for the first time ever and in the last 7 days I've had 295 views - wow - no pressure here - I hope you all enjoy the blog whether you are direct friends and family looking for an update on Camilla or whether you are a family with a child dealing with similar circumstances and are looking for comfort in the fact that you're not alone - either way I'm glad to have you :)

Sunday, April 3, 2011

five years ago today-

It kinda snuck up on me this year - it's our anniversary. Five years ago today was the first day I ever heard the words Infantile Spasms. Five years ago today was the day I was told my baby would never walk or talk. Five years ago today Camilla was given her first dose of antiepileptic medicine (AED). Five years ago today she had her first EEG. Five years ago today we lost hope. Five years ago today we lost a very important part of our baby - we lost her future.

From the moment I learned I was pregnant (and honestly since I was a little girl) I wanted a little girl of my own. I dreamed of her being a dancer, a gymnast, a cheerleader, seeing her walk across the stage at graduation, seeing her Daddy walk her down the aisle and seeing her raise babies of her own. Oh what a joy to think about these things and on the tough days of my pregnancy I would just sit and dream of all of the good times we would have. Five years ago today my dreams changed.

Many parents of special needs children go through the five stages of grief upon learning of their situation - 1 denial 2 anger 3 bargaining 4 depression 5 acceptance. I recently read an article about a mother of a deaf girl who went on and on about how she went through these stages and how excrutiating it was and my heart just went out to her because I knew her pain. She then went on to say that two weeks later she arrived at acceptance and they just regrouped and went on with their lives. Wait a minute - two weeks? Well I am truly proud for SUPERMOM but that was NOT ME. Here we are five years later and I finally feel that we are arriving at acceptance. I finally feel that we are finding Camilla's future once again.

Just a look at what my 'baby angel' has been through in the past five years:

11 EEG's: 20 mins to 72 hrs in length
3 MRI's
1 lumbar puncture
genetic testing
AED's: Phenobarbital, Lamictal, Topomax, Keppra, Banzel, Clonazepam, Depakote
Other meds: L-Carnitine, Clonidine, Adderall, Risperdal, Melatonin and a WIDE variety of other herbal and vitamin supplements (pills and injections)
Ketogenic Diet - 2 years (the only thing that has EVER helped to control seizures)
Vagus Nerve Stimulator
4 hospital stays
Gluten Free Casein Free Soy Free diet - 9 months
Corpus Callosotomy - to be scheduled for May 2011

In looking back at each of these events or meds I am stunned by how good she is through all of this. She takes her meds with applesauce and I don't think she has EVER fought me on this - she just knows they go with breakfast, dinner and sometimes lunch. Some of the tests have been trying but she still gets through them all better than I probably would. I really am amazed at what a trooper she is and how she can remain sweet and loving through it all.

I'll end by sharing her official diagnosis'

1 Infantile Spasms evolved to Lennox Gastaut Syndrome
2 Severe Global Developmental Delay including Mental Retardation (provisional)
3 Autism (provisional)

*provisional just means it's all a result of the IS/LGS


Five years ago today - my whole world changed.

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you HOPE and a FUTURE." Jeremiah 29:11

Friday, April 1, 2011

waiting-

How does the song go, '...the waiting is the hardest part.' So true - SO true! We are just kinda in limbo these days waiting for the next appointment, waiting for surgery and still waiting for the latest meds to work. So far Lamictal is not helping with seizures but we still have a long way to go to get to full strength, 3 1/2 months in fact. This is the one that can 'be fatal if you see a rash' and thank GOD for no rashes but you have to wean onto it very slowly. It will take 4 months to get to thereputic levels :( Also, we are still weaning off of Banzel and are down to a minimal dose at this time - I hope Dr. Kim will remove this one SOON. It seems to have worsened the presentation of the seizures and it's the one that makes her get up several times each night. We are down to two or less times most nights and we have had three (cout'em 3) full nights of sleep since Dec. 19th (yes I'm being sarcastic). Seizures are averaging about 15 per day mostly mild to moderate with a few severe coming early morning and late night. She's still having a reaction to each one but with some of them now she laughs hysterically afterwards - not a good laugh though.

In other Camilla news - we registered her for Kindergarten again this coming year. We decided it would be best to repeat since hopefully after surgery she will be able to learn and retain the basics much better than this year. She loves school so much and we are happy with the love, learning and attention that she receives from everyone at the school.

As for prayer requests:
patience (for the waiting)
rest (for the sheer exhaustion)
calm (for her hyperactivity and seizures)
peace (going into surgery)

Again, thank you all for the wonderful cards, texts, calls, gifts and messages that we continue to recieve on a daily basis. It is wonderful to know that so many are thinking of and praying for Camilla and it is so reassuring to know that we have so many great friends and family 'with' us during this time. God Bless You ALL!

I plan to post some videos of Camilla soon - hopefully these will serve as the 'before' videos and then I'll post again after surgery - praying for wonderful differences between the two. Some of these videos show her having seizures so be prepared if you've never seen this. Her's are not shocking but some people seem so disturbed after seeing them - I guess we are so numb to it these days - it's amazing what you can get used to after five years.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." God continues to reveal his plans for Camilla each day. He has carried us safely so far along this journey with Camilla and we have FAITH that He will see us through these next several months. Looking back on what she has been through we can NOW see so clearly that He has brought us to this place (at one time we could never imagine ourselves here) and we know that this is where we are supposed to be. We know that this is how He is choosing to work through Camilla. Through his plans He is giving us hope and we have faith that He is also giving Camilla a future.

Well, I hear the pitter patter of little feet and since it's just after midnight that means she right on schedule - I better go before she wakes Crosby.