The Ride

Life with Seizures is a Roller Coaster – you learn very quickly that good days without seizures do not equal the end of the seizure nightmare.  Any parent of a child/baby/loved one with seizures can attest to the fact that the unpredictability of seizures sets you on edge all the time and any twitch, startle or strange movement makes you positively sick to your stomach.  The moment you become too relaxed and get accustomed to not seeing seizures, they seem to come roaring back.

After the 17 day run of no seizures (which we are still so thankful for) Peyton started having a few seizures here and there and suddenly on Saturday, her seizure count for the day was 18.  On Sunday, she had 12 and 7 already today.  Her ketones have been small to moderate instead of large so this may be a contributing factor.  We are working to get those large ketones back because that is when we typically see the best seizure control.

We are also concerned that because of her recent growth spurt, her phenobarbital levels may be low.  I have an email in to her neurologist to see if we can get her levels checked asap. 

Hopefully, we can get some control back and see less and less of these awful seizures until we don’t ever see another one.

This is the bummer news so now I will share the not so bummer news.

She is smiling DAILY!!!  Over the past 20 months, we have seriously wondered at times if we would EVER see her smile consistently and now we are getting daily smiles.  Those smiles are like balm to the seizure wounds. 

She sits in her kid cart and plays with toys on her little tray.  I used to sit and wonder if she would EVER play with toys.

She is trying to roll over and this is going to happen, I KNOW it. 

She is my hero…..every day.

Still taking this roller coaster ride one day at a time.

On a side note, Ed and I got to participate in a trip to Raleigh, NC to visit with two of our local representatives and two of our Senators to advocate for Early Intervention/Early Childhood Education.  It was an interesting visit and we hope we made a difference.  

See No, Hear No, Speak No.....SEIZURES.

I shouldn’t say it, I shouldn’t talk about it and I shouldn’t even go there, BUT, Peyton has gone 16 days without a seizure!!!  Omgoodness!!!  This is her new record.  She is still holding her head up….more wobbly on some days, but we are noticing big differences in her strength and her ability to move.  I am convinced that any day we are going to see her roll over.    She is giving us lots of half smiles these days.  We are expecting BIG smiles soon!  We are thanking God for all our Peyton blessings.

Lots of action in our lives these days.  Blake is playing travel basketball and last weekend his 3^rd grade team won the YBOA State Basketball Championship!!!  Go WNC Altitude!!

Tired 

guys - This is after we got home from the State Playoffs.

Mackenzie and Blake are in the last days of the school year and finishing up their EOG’s (which I hate and don’t even get me started!!!) 

Looking forward to summer time and enjoying time with the kids.  Time goes by so fast and we get so busy, we forget to just enjoy each other.

Kisses from Sissy are the BEST!!!!

Sleeping Beauties

Two of her favorite people on the planet sharing the feeding responsibilities:-)

To Infinity and Beyond!

Prayer

I would like to ask all those who read our blog to pray for another child that I have heard about thru a mutual contact.  Her name is Emma and she is 4 years old.  She was born with severe neurological issues and has not only survived (against all odds) but flourished developmentally beyond anyone’s wildest expectations.  I don’t know this family personally, but I know they have been tireless and faithful in their efforts to help Emma and to use any and all resources that are available for her – stories like Emma’s truly inspire me.  Her parents are true heroes to parents like me who have started this journey more recently. 

Emma is having surgery today or tomorrow and the next 10 days will be a tough road for little Emma and her family.  Please keep this precious child and her family in your constant prayers and please share this request with your own circles, churches and family.  I will be receiving updates on how she’s doing and will post them. 

Thank you Peyton’s friends for adding another sweet child to your prayers!!!

Patience is a Virtue

Peyton is starting to gain some head control.  This is a long time coming!  We have almost completed one more wean of a seizure med so now she is only on Phenobarbital and the Ketogenic Diet for seizure control.  She takes several supplements, but this is vastly different from where we were a year ago with her meds.  At one point, she was on five different seizure meds.  So thankful those days are behind us!

Seizures are sporadic with her.  She has had two or three in the past three weeks.  The seizures really are getting better and better and as the seizures sloooooowwwwwllyyyyyyy decrease, her development takes teeny tiny strides.  She is using her arms and legs so much more and doing so well with all her therapies.

 

Patience is such a vital necessity when working with special needs of any kind, whether your child has a speech impediment, learning disability or more serious delays.  Nothing happens overnight and some days it’s so hard to press on when you feel like nothing is being accomplished, BUT when you start to gain a tiny bit of ground or your child FINALLY does something that comes so easy for others, there is just no way to describe the joy in that.  All the hours of hard work and implementing all the things we have learned from Peyton’s therapists is finally starting to pay off.  When I see her bobbling that sweet little head of hers and showing us that she can really hold it up, I feel like she has won an Olympic event.  I can’t imagine feeling any prouder. 

Lots of other good things going on…….Peyton’s nursing aide has been a fabulous addition to the Peyton Team and we are so blessed to have her…….Summer is coming and the kids have a few weeks of school left – they are excited and ready for a break……we took a vacation for Spring Break and went to the beach and had a wonderful time, Peyton loved the ocean breeze!

Posting some pics and good weekend wishes for everyone!!!!

Daddy bought her the shades!

Nice nap in the shade at the beach.

The kid cart became a nice clothes rack at the outlets at the beach.  Peyton didn't mind, she just slept thru the whole shopping excursion!  

Check her out holding her head up - not the best pic, but you get the idea!!

Look at the sweet girl holding her own bottle!!  

Seizures aren't funny

So, our sweet middle child, Blake, came home from school yesterday and was a little bit upset about something that happened during recess.  One of his classmates asked him what was wrong with his baby sister and Blake told him she had seizures.  Well, evidently, the little boy and some friends starting playing a ‘game’ where they would  hit each other and say, “Oops, sorry, that was a seizure”  This rankles (is that a word?) me.  Not because I think these little boys were making fun of Peyton or of Blake.  It just rankles (I like that word!!) me because I know the horror of seizures and so does Blake.  We have seen first-hand how they can devastate.  We hate them at our house and we fight them as hard as we can so I guess it’s hard to swallow when someone makes a game out of something that has been so awfully and personally in our faces for the past year. 

So, how do I handle this??  I called his teacher and left a message for her to call me.  She is a sweet and understanding lady, so I am certain she will help out in whatever way she can.  I think an awareness of how making fun of something you know nothing about can be so personally hurtful to others.  I honestly don’t believe these feisty little third grade boys had any inkling of how much this bothered Blake or maybe they did, but they ARE feisty little third graders so I can hardly be upset with them. 

I know that in my life I have been apathetic to things like seizure disorders, special needs, etc….but having Peyton has changed my entire perspective and if I could go back and exhibit a little more compassion and understanding, I would.  Now, don’t get me wrong, I was never mean to anyone with special needs or delays, but since it really didn’t affect me or mine I didn’t pay a lot of attention to it – this seems so selfish in retrospect. 

Being the sibling to a child with special needs is a unique role and I feel like our kids have handled it so well.  They are my little heroes on a daily basis and they love Peyton as unconditionally as Ed and I do.  They are both fortunate to have a great school and such great little friends that accept them and love them and love Peyton, too.  I worry a lot about what Peyton can’t do and how many hurtles she is going to face in her life, but when I see the lives she has touched, it makes me realize how much she already has done.  

Her circumstances are a daily education…..a very humbling education.  

Seizures and Smiles

What a couple of months it has been!!!!  Peyton had fewer seizures in February than she has had since all this started back in January of 2010.  She actually had two stretches that lasted seven days and then several 3 and 4 day stretches.  It was GREAT!!!  In spite of the hospitalization for dehydration, the temporary feeding tube, the tonsillitis, and all the other little bugs that attacked her immune system.  So we go to Chapel Hill the first of March and bragged on how great she was doing and her neurologist was very pleased with her progress and even agreed to start weaning one of the two seizure meds she is on (the Keppra, which we never felt really helped her).  We also saw a new dietitian that same day and she was great.  She spent a long time with us and we decided it was time to wean Peyton back on to Dairy (ketogenically, of course!!!)  We formed a plan and then headed home…….

The VERY NEXT DAY the seizures started up again and she had an awful week or two.  She had more seizures in one day during that time then she did the whole month of February.  Talk about discouraged!!!!  We think maybe we were trying to make too many changes at one time…the dairy introduction and the wean down of the Keppra, so we stopped the wean down of the Keppra and kept at the dairy.  She is now totally back on Dairy again which makes the diet a little tastier for her.  She gets heavy cream and butter or Velveeta cheese mixed in with all her baby foods.  We will attempt the wean of the Keppra in another week or two.  The seizures have slowed back down again and she is currently on day 4 without one, so we’ll take it!!!! 

In other news, she has been approved for Cap-C, which means she qualifies for a nursing aid that will come to our house for up to 11 hours a day, depending on the need.  We are thrilled.  The process has begun and Peyton’s first nursing aid has been great!!!  We have some really great people at the nursing agency working with us and they are very understanding of what a difficult transition this can be but so far so good!

Peyton SMILED for real!!!  About two Saturdays ago, Mackenzie was talking to her and entertaining her and I heard Mackenzie squeal, “MOMMY, COME HERE, SHE’S SMILING”  I walk over with not much hope that is really what’s going on since a lot of times, when Peyton is having a seizure, she appears to be smiling, but it’s just the seizure.  But low and behold, Mackenzie is right, Peyton is SMILING, real smiles.  It was so awesome.  I grabbed my phone and got two cute pics of it which I will post below.  Mackenzie cried and cried tears of joy.  It was a precious precious moment.

Currently, Peyton is battling daily fevers.  It’s the strangest thing.  She woke up last Saturday with a high fever of 104 and throwing up, but she quickly got better and only felt bad for the day and by that night, the fever was gone and her tummy was fine.  Every day since, she will wake up with a fever (anywhere from 100 – 102) and by 9:30 it’s gone.  We called the ped and they said it is probably the virus from last weekend slowing leaving her body.  We are hoping the fevers go away and don’t end up being something more serious. 

Happy Weekend to everyone!!!