Procedure & Earrings

Happy Weekend!!  Peyton had a very successful procedure on Wednesday and her eye feels so much better.  We didn’t realize how uncomfortable she must have been, but it was almost immediate relief for her.  She even seems able to focus a little better since the procedure.  They were able to remove the offending eye lashes and clear her tear duct.  The tear duct was very very clogged up with lots of nasty build up that he cleaned out.  We are so glad she was able to have something done that would give her some relief.  We feel helpless so much of the time that it was a great feeling to get something 'fixed' for her.

Posting a few pics….one of she and my sister prior to surgery.  My sister works for the ophthalmologist who did the procedure and she got to be in the procedure which gave us lots of comfort.  The other is the day after the procedure and she is looking at her toy.  I know I know…..looking at her toy doesn’t sound like a big deal, but her lack of focus that we are used to makes this a very big deal!!  Plus, the Santa hat was too cute not to post!

 Aunt Ruth wore these earring especially for Peyton.  Those gawdy things always seem to catch Peyton's eye so Aunt Ruth does her best to always have something shiny on when she is around her.  Yes, she loves her that much:-)

Her eye is still puffy from the procedure but she is still very clearly looking at her toy:-)

Patty Cake

Peyton likes playing patty cake!!!!!!!! This is so huge to us. She has never ever shown much interest in anything we try to do to entertain her, toys or otherwise, but the other night, Ed was holding her in the recliner and she was fussing and fidgeting and he took her little hands and started playing patty cake....she calmed down and starting watching what he was doing with big 'ol eyes. I thought it was cute but to be honest, I thought it was a fluke. So, last night, I was holding her and she was fussing and fidgeting and Ed said, "Play patty cake with her" so I did and low and behold, she calmed right down and as long as I was doing patty cake, she was fine, but the second I stopped she fussed again. I can't even explain how wonderful it is to know that she was paying attention and enjoying us. So what if she can't sit, hold her head up or stand yet, SHE LIKES PATTY CAKE:-):-)

Peyton has an issue with her right eye. She has her Daddy's long beautiful eye lashes, but she also has a droopy eyelid that causes some of those long beautiful lashes to get in her eye. She has constant lashes in her eyes and this is so uncomfortable, so next Wednesday, she is going to have a procedure done that will remove the offending lashes. It is electrolysis (I am sure Ruth can give you all the medical terms for her condition and the procedure). She has also had a clogged tear duct since birth and he is going to take care of that at the same time. We are happy to have this done as it will give her some relief. She will have to go under general anesthesia to have it done and this is a bit scary, but Aunt Ruth will be in there with her and our favorite opthamologist, Dr. Christianson, is doing the procedure so we know she's in the best hands. If you think about it next Wednesday morning, please say a prayer for her that things will go smoothly!

Doing the Next Thing

Happy Thanksgiving!!!  There is so much to be thankful for this year…..some things I didn’t even know to be thankful for a year ago.   Last Thanksgiving, Peyton was 4 weeks old, keeping us up at night and I was recovering from a C-section.  I thought life was tough…..HAHAHAHA….little did I know!!!   This past year has had ups, downs, heart aches, heart breaks,  fun times, hard times, sad times, happy times but thru all of it I have learned that no matter what life throws at you, that you really can survive it.  You can pick yourself up, PRAY, dust yourself off, PRAY, put on your big girl panties, PRAY some more and move forward.  You can look around you and realize that there are so many blessings out there and you just have to find them.  Some days, you have to delve deep into your soul, but you will find a blessing and something to be thankful for. 

I have learned to do the next thing.  Back when this all started, and we were home between hospital stays, I wasn’t functioning well and wasn’t coping well.  I wasn’t getting any sleep and at one point all I could do was sit and stare into space.  I remember my wise mama (who stayed with us for so much of those beginning days) saying to me…”Heather, you need to do the next thing, whether it’s brushing your teeth or putting a fork in the dishwasher, just do the next thing”  So, I did the next thing and kept doing the next thing and that was my mantra many times over the next few months…..just do the next thing.  Sometimes, it was as simple as putting something in the laundry basket or emptying the dishwasher, but doing the next thing helped me….helped me realize in all the chaos and uncertainty and fear that I was still me, Ed was still Ed, the kids were still the kids and Peyton was our very special blessing.   God entrusted her care to our family and our job is to love her, care for her, teach her, fight for her and be thankful that she is in our lives.  No one ever expects things like this to happen, but when it happens,  you find out real quick what you’re made of and sometimes you don’t like what you find,  but you learn so much from an experience like this, that you learn to forgive yourself for your failures and you strive to be a better person, a more humble person, and a more thankful person.  

I guess after all my ramblings that I should update you on sweet Peyton.  She is still having more good days than bad.  She had her first illness (besides the seizures) since birth.  She caught a tummy virus that went thru our house like a tornado!!!  She handled it probably better than the rest of us and never even ran a fever with it like the rest of us.  I have been so scared that when she did get sick for the first time that the seizures would just go crazy and we would end up back in the hospital, but it was a very non-eventful illness and she is feeling lots better.  Still trying to hold her sweet head up and spending more time in her stander and kid cart.   She seems to be doing more with her hands and will attempt to reach and grasp things, but can’t quite make her hands do what she wants them to.  She is more responsive to our voices than we have seen, especially Ed’s voice.  If Ed has been gone for a while and he comes in the room and she hears his voice, her little head turns and she isn’t happy till he’s come over to play with her for a minute.   She is most definitely a Daddy’s girl.

I hope everyone has a wonderful day tomorrow, full of good food, good family, good friends and the ability to recognize all the blessings in our lives.  

this & that

Let’s see….where to begin.  Lots going on in Peyton Grace’s life over the past week!!!  First, her big birthday – she hung out with her Daddy all day and anyone they ran into got their photo taken with her in a birthday party hat!!  They met me for lunch and we had a lovely time!  Her birthday party was on Saturday and lots of people came to wish Peyton a happy birthday and help us celebrate her first year (with Ed’s chili and wings).  She really seemed to enjoy the party and we got some really cute pics….posted below. 

To be honest, celebrating her first birthday was something I almost dreaded.  I was having a hard time with the fact that she wouldn’t be like most 1 year olds…..into everything and crawling or walking and happy and smiling.  Don’t get me wrong, lots of acceptance has gone in our lives this year, but the first birthday is just so representative of progress and development and it absolutely breaks my heart to think about what has been taken from her this year, but you know what????  Her day was a celebration…..a celebration of what she has overcome this year, a celebration of the fact that she isn’t having 100 seizures a day, a celebration that she has not been in the hospital in 9 months, a celebration of the fact that she doesn’t sleep all day anymore, a celebration of the fact that she is ALIVE.  Peyton is by no means a typical 1 year old, but Peyton is her own person and even tho’ her first year has been so unlike our plans, her first year has inspired so many and taught us so much that we couldn’t possibly be sad on her first birthday.  If anything, this was a HUGE milestone for her.  She made it one year, in spite of the thousands of seizures she has had.  She is growing, she is progressing and she is loved. 

I want to tell you about our day yesterday.  Our friends with CDSA (early intervention) invited us to come to a conference they were having about Assistive Technologies.  They wanted us to come and share our experience and talk a little about how much Peyton’s equipment is helping her and our perspective, as parents just beginning on this journey.  It was such an honor to be invited and to get to go and meet so many wonderful people that devote their lives to helping kids and families.  It was a humbling experience and I am by no means a good public speaker, but when it comes to Peyton, the words come much easier.  Peyton got to hang out with some of her favorite people and did so well.  Sometimes, crowds bother her, but she seemed to have a sense about where we were and was so sweet the whole time.  They fed us a wonderful lunch and it was just a great experience for both Ed and I. 

Peyton’s seizures seem to do better than we have a bad day or two, but we can usually pinpoint the cause for the bad flare ups so we continue our battle with the seizure monster.  One day we will beat it!! 

Enjoy all the pics!!!!

Happy Birthday!!!!

Dear Peyton,

Happy Birthday sweet baby girl!  I can’t believe this year has gone by so fast and it has not been the year we planned, but I am learning that life rarely goes as planned.  One year ago tomorrow, you came into our world, a beautiful healthy 9lb 12 oz baby girl.  You are still beautiful and I still stare at you and think how precious and beautiful you are.  There are lots of things you can’t do, sweet girl, but let’s not focus on that today, let’s focus on what you can do and the beauty of your life.  You have come so far since your seizures began and life stood still.  You can bat at your toys, you can watch the baby channel while sitting in your big girl chair.  You eat baby food and you eat it well!!  You work so hard during Physical Therapy and you are getting stronger every day!  You can listen to your sweet big sister and big brother when they read books to you.  You like to have your family somewhere around you at all times.  You love your grandparents and they love you.  You like to yell at us when you are upset and you do it well!!  Most of all, you can wrap anyone who knows you right around your sweet little finger.  You have a way about you that makes others fall in love with you and I think it’s just the fact that you are so sweet and so innocent and so undeserving of the burden you’ve been given.  I will never ever ever understand why you have this cross to bear, but I know you were created for a purpose and we, your family, are here to help you achieve that greater calling.

You have taught me so much this year and thru the tears, the heartache, the imperfections of me, your mom, I like to think I am stronger now than I was a year ago….or even a month ago.  Each day brings new challenges to our world and I am continually inspired by you and by other parents that have traveled this journey before us and the bravery and iron will it takes to do what we all do, but you sweet girl, have the strongest will of us all and I know that one day, you will hold that beautiful head up, you will sit up, you will smile, you will laugh and you will know you are loved. 

One day, I hope you are able to read back over this blog and know just how much you are loved and how many people are part of Peyton’s Village and how many prayers have been said for you and how many prayers have been answered.  You have a purpose, you have a will for your life and God doesn’t make mistakes.  You are beautiful and you are special and it is a privilege to be your mommy.  I pray this next year brings joy and happiness and healing.  I pray the seizure monster takes a hike out of your life and forgets to come back. 

I love you so much Peyton Grace and tomorrow, we celebrate you.  We celebrate where you’ve been, where you are and where you’re going.

Love,

Mommy

Our Village

So a little Peyton update, sorry it’s been so long!  She has had a bit of a rough week.  More seizures than normal and she just isn’t feeling 100%.  We think she may have a touch of a virus or something.  No fever, thank goodness, but just cranky and tired.  We have been in contact with her neurologist and the dietitian and we are going to increase her diet ratio in the never ending attempt for better seizure control.  She is still enjoying her kid cart and will watch the Baby Channel while sitting in it.  She even reaches for the TV at times, which we love to see.  She is getting stronger and we are noticing little things like more strength in her back and more strength in her legs.  Sometimes it feels like progress is so slow but we just have to remind ourselves that progress is progress and we’ll take progress over the alternative.

 

It truly takes a village to do what we do on a daily basis and we have an awesome village!!!  We have the best parents anyone could ask for us and they support and love us unconditionally and make this journey all the more workable.  Ed and I both have siblings that would do absolutely anything on the planet for us and we love you guys (we don’t say that enough).  Our extended families are always there and always praying and always encouraging.  Our friends are so amazing and allow us to be ‘normal’ while understanding that our lives aren’t all that normal.  Our facebook/blog friends are not to be forgotten either - your posts have gotten us thru some very dark hours and continue to do so.  I can’t leave out all of Peyton’s friends at Early Intervention – you guys are my heroes and you have been with us from the onset and your compassion for Peyton and for us is something I don’t know how to put into words, but the Reed family is forever indebted to you for all you do!  We just couldn’t be more grateful for our village and we humbly thank each and every single one of you reading this for your prayers, support, love and interest you continue to show in sweet Peyton’s story.  

Watching some T.V.

So, this weekend, Directv is giving us the Baby Channel for free and Peyton is thoroughly enjoying it while sitting in her big girl chair.  We can see such a difference in her already after using this piece of equipment for just a week.  This is a loaner, but she was fitted this week for her very own.  It's going to be purple with butterflies.....she is sure to love it:-)

You Can't Judge a Book by it's Cover

I have always heard “You can’t judge a book by it’s cover”  Well, I learned yesterday that you can’t judge a kid cart by it’s cover - let me explain.  We have several pieces of equipment we use for Peyton.  The stander, a tumble chair, and some therapeutic toys, etc….a few weeks ago, our great friends with Early Childhood Intervention brought us an adaptive stroller for Peyton.  Ed and I took one look at that stroller and put it in the garage and left it there.  We have accepted a lot over the past 10 months about Peyton and her development and her special needs, etc…..but we just weren’t ready to see that stroller.  To us, it looked like a wheelchair and every time I looked at it, I felt like I was accepting that she wouldn’t ever do normal things.  Silly, right??? 

Well, yesterday, her physical therapist asked where the kid cart was and I kind of mumbled something about it being in the garage and she asked me to get it.  I begrudgingly brought it into the living room and she proceeded to help us get Peyton into the chair while explaining that this chair was not a permanent fixture in her life, and it was going to help Peyton learn to sit alone and get more head and trunk control.  Once Peyton was settled in, she really liked it.  She could look around and feel like a big girl and see the world from a whole new perspective.  I quickly changed my attitude about the kid cart and realized that I had to get over myself (yet once again).   Seems I spend lots of time getting over myself latelyJ

Welcome To Holland

"Welcome to Holland" is an essay, written in 1987 by Emily Pearl 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.

Mad vs Happy

Busy week!!!  The beginning of the school year always brings chaos to our world.  We had a great Labor Day weekend…..spent it with some dear friends that we have known since before we got married and although they moved away, we still maintain our friendship and get together whenever possible.  We went to their house this time and a fun time was had by all…..there was even a midnight ride on the John Deere Gator…..not the kids, not the Dad’s, so that just leaves the Mom’s - love my friend Kim -  we laughed all weekend long.  She has three sisters that feel like family and we loved seeing them, too!

Peyton enjoyed herself and made herself right at home with her toys and bonded with their Dachsund, Pepper, who was 12 years old and seemed to know that Peyton was a sweet baby and just snuggled up to her…pic posted below.  Sweet Pepper died this past Tuesday and we are so thankful we got to be there for her last weekend.

Peyton’s week has been good.  Still teething like crazy, but seizures have been somewhat minimal.  She is still trying hard to hold that little head up and seems to have her best head control when she’s really mad at us.  What makes her mad you ask???  Let’s see, HUNGER, boredom, discomfort, crowds, did I mention HUNGER??, teething, and any physical therapy that she has to work at.  What makes her happy?? Baths, FOOD, Mackenzie, Blake, cute little dogs (that Daddy refuses to let us get for her), her toys, wind on her face when she’s outside, visits to her Chiropractor, grandparents, staying home and did I mention FOOD???  Typing this list of her likes and dislikes makes me happy because it reminds me that she IS her own little person with her own little personality that is slowly starting to emerge.  It also makes me smile because her list of likes is longer than her dislikes.

I will update more later and post some new pics.  Everyone have a GREAT weekend!!  Thanks for reading about our sweet girl and for keeping her in your prayers always.

Our Three Words

10 Months Old

Sorry for not posting much lately, but Ed has been out of town for a few weeks and I have been single momming it (with lots of help from awesome family).   Peyton’s seizures have been a little more frequent this week, but she has been teething and that usually stirs things up with the stupid Seizure Monster.  The last day or two they have slowed down again, thankfully.  She does seem to be more aware of her surroundings and seems to have better focus.  She is still batting at her cool toy and if we cheer for her, she hits it even harder (pic posted below).  At times, she seems to have much better head control and seems to be trying harder to hold it up.  She likes it when Blake or Mackenzie read to her.  It’s been a very good way to encourage Blake to get his homework reading done since he drags his feet about doing it every night, but having Peyton stare at him adoringly while he reads seems to helpJ 

Peyton is 10 months old and it’s so hard to believe!!!  I don’t even try to compare her to what a “normal” child would be doing at her age, because Peyton is on her own path and progress can’t be measured by normal methods and we just try to be thankful for the small baby steps of progress.  She has brought such joy to our lives and I can’t even describe what it’s like to see Mackenzie and Blake become better people just by being Peyton’s big sister and brother.   God has given them each the gift of compassion and this whole experience so far has helped them open their eyes to the reality that special needs children are kids like them and their special needs just make them unique individuals. 

Hope everyone has a nice long holiday weekend!

Day by Day

So, if you had told me a year ago that Mackenzie would be starting 5^th grade, Blake would be starting 3^rd grade, I would be working full time and enjoying my life and my kids, I wouldn’t have been surprised but if you had told me a special needs baby would be thrown in this mix, I would have had a panic attack ON. THE. SPOT.  Funny how all that we’ve been thru in the past 8 months seems so HUGE while we were living it but in retrospect, now that I’m on this side of it and I know that more challenging days most likely lie ahead, the past 8 months seem more like a part of a bigger plan….a plan bigger than me, bigger than my family and bigger than anything we have the ability to understand.  My control (which I never really had in the first place) has been taken away and replaced by trying to learn to live day by day and to live by faith.

On to what is going on with Peyton – we are still seeing daily seizures, but nothing like we have seen in the past.  Development is a struggle, but we keep on keeping on and I know all her hard work is going to pay off.  One of my favorite times of day is every night at about 9pm when Peyton is winding down and I hold her against my chest and she stares up at me and all is right with our world.  I put all thoughts of seizures, developmental delays and other stressors right out of my head and I just hold my little baby girl and look in her eyes and enjoy her.  For so many months, I didn’t feel like I could enjoy her because I was always waiting for the next seizure, but I am no longer letting the Seizure Monster rob me of the joy of my baby girl!!!  So, Seizure Monster, once again, you are not winning!!!  

Excited & Apprehensive

News of the day, of the week, of the year…..Peyton has had only ONE seizure in the past 48 hours.  This has NOT happened since she started having seizures.  I want to be excited and do some cartwheels, but first, me doing a cartwheel is not even a remote possibility and second, being excited scares me to death.  This roller coaster we have been on for 8 months hasn’t allowed us to be excited for very long so I am maintaining my cool and being thankful for 48 hours of only ONE seizure.

 

Latest developments are several…..Peyton has a stander.  This is a device that is helping her learn to stand and helps with weight bearing on her legs and hips.  I am posting pics – she didn’t like it at first, but after she got comfy, she loved it and even fell asleep in it!!    She continues to bat at her toys and has even started putting weight on her legs when I hold her and she straddles my leg with her feet on the floor.  She is making more eye contact and is much quicker to let us know when she’s unhappy these days.  She is cutting her second tooth so we have had some sleepless nights, but we are ok with this – I would rather she be fussing from teething then sleeping from seizures. 

Progress is slow, but progress IS progress!

LET ME OUTTA HERE!!!!!!

ZZZZZZZ.............

Peyton's Story so far.....

Peyton’s story begins in March of 2010 when we found out I was pregnant with our 3^rd child.  Very unplanned, but we were so happy to add to our happy crew.   I had a completely normal pregnancy and on October 26, 2010, Peyton Grace Reed made her entrance into this world.  She was a large 9 1bs 12 oz beautiful baby girl and we were thrilled!!  Our wonderful pediatrician pronounced her one big healthy baby!  The first 6 weeks of her life were normal….we did discover a milk allergy and had to start her on Alimentum. 

On December 6^th, I was holding her and noticed her leg jerked, just once, but it was weird.  I had already had two babies and you get used to weird infant movements, but something about it just didn’t seem normal to me.  We went on about our business of family life and over the next few weeks and thru the holidays, these leg jerks became more frequent and higher in number.  We talked to the pediatrician and showed him a video of it and he felt like it was nothing but wanted to refer us to a pediatric neurologist just to be sure.  Our appt was scheduled for Friday, January  7^th.  I was nervous but we have such a healthy family history, I felt like everything was going to be ok. 

Things were not ok.  I went back to work on January 3^rd and my niece was watching the baby for us.  I had asked her to count how many times Peyton had the leg jerks and for three days, it increased to the point where she was having anywhere from 30 – 50 leg jerks at a time and these episodes were happening every 5, 10 or 30 minutes.  She would not seem distressed by it and would even smile thru the jerking but we noticed that her hands were trembling sometimes during the leg jerks.  We contacted her pediatrician and he pretty much immediately had her admitted to Mission Hospital in Asheville, NC.  This is about 35 minutes from where we live.  I was scared but still felt like things would work out.

They immediately did an MRI, lots and lots of blood work and an EEG and even an abdominal ultrasound.  I spent that entire night praying that she was ok and so fearful of what the results of all these test would show.  MRI – clean, blood work was normal, u/sound was normal.  EEG showed focal point seizures.  The Pediatric neurologist started her on Keppra and assured us he was cautiously optimistic they could control the seizures and likely she would eventually outgrow them.   The Keppra didn’t work and the seizures changed into another seizure type called Infantile Spasms, these are not as innocent as they sound.  These are catastrophic seizures that can cause serious developmental delays and mental retardation.  The Keppra was stopped and she was started on Prednisolone.  This stopped the Infantile Spasms and we were sent home from the hospital feeling pretty darn “cautiously optimistic”.

Three days after we got home, the seizures came back, not the infantile spasms, but seizures nonetheless.  We went in for another EEG and it was clean.  Feeling pretty good, we started feeling like things were gonna be ok.  Over the next few days the seizures got worse and more intense and we called the neurologist again.  He called in Zonogran.  Peyton was seizure free for about 24 hours and we were ecstatic, then the seizures started again, worse than before.  The neuro upped her dosage and they stopped again.  We were happy.  The seizures came back within 24 hours along with more of what appeared to be Infantile Spasms.  At this point, we knew we had to go to a bigger hospital.  We called our pediatrician and within 24 hours, we were headed to Chapel Hill Childrens Hospital (5 hours from where we live). 

Peyton was admitted and had another MRI, a 48 hour EEG, massive amounts of blood work and a lumbar puncture.  We just knew these great minds would get to the bottom of this.  Our wonderful docs at Chapel  Hill started aggressively treating the seizures.  NOTHING worked.  Tegretol, Phenobarbital, Trileptal, Keppra (again), Klonopin…..all the tests came back NORMAL.  I didn’t get it and I wanted to call Dr. House.  What I didn’t understand is that a vast number of people with seizures never ever find out WHY they have them and Dr. House sure couldn’t help us.  Thru February and March, Peyton was in the hospital for a total of 25 days and no seizure control.   We started her on the Ketogenic diet in March and this seems to be slowly slowly helping slow her seizures.

She is currently just weaned off Klonopin (nasty drug for her) and is taking Phenobarbital, Keppra, and several supplements.  She is still on the Ketogenic Diet.  She receives weekly PT, OT and has lots of loving family and friends that help us care for her.  She is very developmentally delayed but we see daily signs of improvement and she is such a warrior.  This has been the most difficult time in my life, but so many blessings have come our way since this journey began and God’s hand has been in everything.  The goodness of others is astounding and we are blessed up one side and down the other (as we say in the south).

Coming Soon!!

This blog is being created to document the journey our family is on dealing with the beast that invaded our family a little more than 7 months ago.  That beast is epilepsy and our beautiful 9 1/2 month old baby girl, Peyton Grace, suffers from intractable epilepsy, which means her seizures are not controlled by medication.  Her seizures began when she was 10 weeks old and it has been a roller coaster ride of hope, fear, faith and love.  Every day is a challenge and every day brings new hope.  Our faith sustains us and we have the most wonderful support network of family and friends that help us on this journey.