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!!!    

PANIC

I am panicked today. 

Peyton is doing better. The feeding tube is out.  She is having fewer seizures (I’m actually afraid to type how few).  She is starting to babble and even can imitate a few sounds.  She is doing a tiny bit better.  She is really really starting to hold her head up more and more.  She has a long way to go but we are seeing baby steps of progress. 

I am panicked.  I am nervous.  I am afraid to be optimistic!!!  What is wrong with me???  I feel like if I get too hopeful that I am setting us up for heartbreak.  I want so much for her.  I am so afraid for her.  

I need to relax.  I need to take a breath.  I need to enjoy her.  I need to enjoy watching Ed and the kids enjoy her. 

I am still afraid.  I have a knot in my stomach when I think about the fewer seizures, the babbling, the head control.  I am terrified.  I want to just be happy and enjoy all these good things.

Fear sucks.  So does the seizure monster.

I am working on the fear and I will always hate the seizure monster.

Next post will be nothing but positivity…..I promise and some cute pictures. 

Actually, here's one of my favs now....

The Good and The Bad

I will start with the bad since I want to end on a good note.

Peyton is still not eating great.  We got excited yesterday because she took some bottle and some applesauce, but this was short lived progress.  She wouldn’t eat anything the rest of the day and we had to feed her thru the tube.  Her seizures are acting up today and who knows why.  I just know I hate seizures and they are mean and stupid.  So she isn’t eating today either, but we will keep on trying.   I don’t know what all this means long term, but I don’t want to think in the long term right now….I will stick with the short term thank you very much.

The good news….which is bittersweet since she is having seizures again today, but let’s be positive, shall we?

Peyton went ONE WHOLE WEEK with no seizures.  This is the longest stretch since they started.  We are thrilled with this.  This is progress and this is the diet.  The ketogenic diet is truly wonderful and as big of a pain as it can be, I don’t want to imagine this past year without it!!!

Developmentally, Peyton hasn’t made huge strides, but she has made small strides.  She still can’t hold her head up, but she tries.  6 months ago she didn’t try.  She will touch the IPad when I bring up the baby apps.  6 months ago, she wouldn’t touch it.  She shows interest in the world around her.  6 months ago she didn’t.  I have to put all this down on paper sometimes so I can remind myself that she is making progress. 

I guess I am in a bit of a funk today.   Life with seizures is a roller coaster.  I wish our family could step off the roller coaster.  I don’t like this roller coaster. 

I said I wanted to end on a positive note, but I guess I didn’t.  Seizures have that effect.

Home Again Home Again

So our quick little overnight hospital stay turned into a three day stay.  Peyton got nice and hydrated then quit eating.....at all!!  She has not been eating well for the past few weeks so this was a concern and had obviously lent to the dehydration.  A temporary feeding tube was put in and we ended up coming home with the tube in.  We are still trying to get her to eat, but she is teething something fierce and not at all interested.  We are giving her the calories she won't eat during the day thru the tube and that's going well, but not something we want to do permanently, but of course, we will do what we need to do for Peyton!

She ended up in the pediatrician's office today because she has been crying inconsolably....I mean for hours on end.  We think her teeth may be the culprit, but don't really know.  The ped did blood work, checked her all over and found nothing wrong so we are going to pray she feels better from those teeth very soon!  If the crying continues, we take her back again tomorrow.

This is a pic of her in the hospital loving on her "dollie"  Her big brother Blake, brought this to her and she instantly liked it.  Not much catches her attention, but Dollie sure has!!