Off the Ketogenic Diet...Next Stop....yummy food!

I see that it’s high time for a Peyton update!  Where does the time go? 

A lot has happened since October!!  She turned 3 and we celebrated as much as she would tolerate. 

She is smiling more and more and more.  This brings us indescribable joy. 

She is now completely weaned off the Ketogenic diet.  She was having horrible issues with constipation – we tried everything and the problem persisted and she was miserable ALL the time.  With the blessing of her neurologist, we began the wean and it has taken about 3 ½ months but she is now fully weaned.  Her seizures have acted up a little, but her quality of life was being affected by the misery she was in all the time so it really has been the best decision.  She stayed on the diet for 3 years and we are eternally grateful for what it did for her while she was on it, but we are sooooo happy to be off of it and introducing new foods to her.  She is enjoying it too and smacks her lips when she sees the food coming.  She is a happy girl and we get those smiles pretty often now. 

We had a check-up yesterday in Chapel Hill with her neurologist and Ed and I both left feeling like it was the best appointment we had ever had.  We have always really liked and respected her neurologist, but yesterday it was clear he had been thinking about Peyton and her situation and thinking of different avenues we could take.  He stayed in the exam room for over an hour with us just going over all the different options now that she is off the diet.  We decided on a round of steroids to start with.  Steroids are generally used to treat Infantile Spasms, which Peyton had in the beginning.  The Steroids were very effective in treating the Spasms.  Sometimes steroid treatment can also be helpful in treating Tonic Seizures – which is the seizure type Peyton has.  We will do this for 2 – 4 weeks depending on how she responds.  After the steroid treatment, we are going to try a different medication.  We will see how all this goes and then go back in 4 months to have a routine 24 hour EEG and to see the neurologist again. 

Developmentally, she is still progressing.  Slowly, but she is still further along today than she was six months ago or even a month ago.  She continues to play favorites with us.  Blake is her most recent favorite.  He has been spending time “playing” with her and she just eats it up.  We realized that we all spend a lot of time caring for and loving on her of course, and we sometimes forget to just play with her.  Blake’s specialty is having fun so they have become the best of friends and she is happy when Blake is nearby.  Not to say she doesn’t love Mackenzie as much because she does, but Mackenzie is more of a mommy figure and caregiver too.  Nobody better to snuggle with then Mackenzie, but play time is all about Blake. 

Thank you for the continued prayers for our sweet girl, even when there is not much in the way of updates. 

Transitions

 Peyton will be THREE this month!!! What????!!!  Shut the front door!!!  How is this possible?  In some ways, the past three years have gone by at a snail’s pace and in other ways, it all seems like a fast blur. 

Since the beginning of this journey with Peyton, there have been some constants in our lives.  God, family, friends and the CDSA (Children’s Developmental Services Agency)  I want to talk about the CDSA.  They came into our lives almost immediately after Peyton’s first hospital stay.  They called me one day and asked about coming out to do an evaluation on Peyton should she need services at some point.  I said sure (thinking the whole time we would probably NOT need their services) Turns out, we DID need their services and turns out, they changed Peyton’s life and our lives forever.  We were on unsteady ground with Peyton and the challenges she was facing, physically and cognitively.  We were terrified.  We were sad.  We were so unsure of ourselves.  Our team with the CDSA came in and helped calm our fears, boost our confidence as Peyton’s parents and helped us realize that life wasn’t over just because we had a child with severe developmental delays.  Not only have they worked tirelessly with us to get Peyton all the equipment, therapies and resources available to her, but they have become our friends and allies along the way.  They get it – usually they know what we need before we do!  They don’t do what they do for the money or the recognition.  They do it because they have a passion to help children and families coping with sometimes unthinkable issues.  Peyton’s life is better because of them.  Our lives are better because of them.  I don’t think I can express in words what they mean to us….Jane, Casey, Gabrielle, Marsha, Donna, Pam, Kathryn and many others we have encountered over the past three years.  I believe these ladies change the world with what they do.  I know they have changed ours and as Peyton transitions to the school system for her therapies and pre-school education, we are sad to say good-bye to the CDSA.  They are part of our family and a part of our hearts.  They will probably never know how they saved us from ourselves back in the beginning when we were so scared and terrified of what the future held.  Today’s blog is dedicated to them and their kindness, generosity, love and unselfish giving of themselves.  They are a bright and shining light and we are so blessed to have had the opportunity to meet them and share our beautiful Peyton Grace with them.

Mission Sleep......

It’s been a long time since I updated about Peyton so here goes…….

Summer has been nice – we went to the beach in early June and Peyton really liked the pool!  She enjoyed floating around with her brother, sister and cousins.  Her sleep schedule was TERRIBLE and she was up almost every single night we were there.  I was exhausted by the time we got home from the lack of sleep, but still had a great time!

This brings me to a current hot topic in our house….SLEEP (or lack of).  We have always kept Peyton in the living room with us in the evening, even after bed time – we got so used to doing this when the seizures were bad that even after things calmed down we continued the habit.  She used to doze off around 10 or 11 and we would take her to bed when we went to bed.  For the past year or so, her bed time has gotten later and later and sometimes she will be awake till 1am or 2am and then usually sleeps so lightly during the night that every little noise wakes her up.  This leads to her being exhausted (and us too) during the day and taking ridiculous 4 or 5 hour naps (we don’t get to nap with her unfortunately!). 

We were at our wit’s end so I asked her neurologist if it was ok to give her Melatonin.  He said yes and emailed me several attachments about kids and healthy sleep habits.  I was rather perplexed because all the reading material he sent me was about kids with no health issues or seizure disorders, etc…..THEN the light bulb came on in my sometimes dim brain.  He was telling me to start treating her like a regular little three year old and get her on a healthy sleep schedule!!!!!!!!  DUH!!!  I don’t know why we have continued to live in crisis mode at bedtime.  Peyton’s seizures are minimal in the evening and even if she has them, she can sleep thru them and they aren’t scary seizures.  I think we just got in such a habit of it that we didn’t stop and think about her needing to have a reasonable bedtime in a quiet room. We even have a video monitor but somehow we didn’t put two and two together that it would be healthier for everyone to establish a bedtime for her. 

We had a wonderful lady with our early intervention program come to the house and work with us on some sleep strategies which was mostly really common sense things we did with our other two children but never even thought of doing with Peyton.  So, Mission Sleep began last Thursday evening and do you know that she has slept thru the night all but one time since we started???  I mean she is going to bed at 8:30 and sleeping till 6:30 or 7:00.  It’s crazy!!  I think she really NEEDED the routine of bedtime and has taken to it like a fish to water.  I feel so dumb for not figuring all this out myself, but we spend so much time dealing with her differences that we forget to treat her like an almost three year old little girl that she is. 

In other news, therapies are all going well and she is getting to be quite the communicator with all her devices and her ability to make choices.  It’s exciting to see this and we love seeing her respond to us and the kids.  She has developed a love of touch and feel books so in my usual fashion, I have gone overboard and bought her a ridiculous number of touch and feel books, but she loves them and we love reading them to her so it’s a win win!

She is working hard on learning to sit independently and some days are better than others, but she will get there….she always does!

I will update some recent pics soon since I know it’s been months since I posted any to the blog.  I put a lot on her facebook page, so if you read this blog and would like to join her page, you can find it under Praying For Peyton on Facebook.  I upload pics often to her page just because it’s so easy from my phone.

Just the Facts.

·         Fact – Peyton has been on Vitamin B-6 since the seizures started over two years ago. 

·         Fact – Peyton has been on a really high dose of Vitamin B-6 for about 10 months – this was done in an attempt to gain some better seizure control – sometimes high doses will help.

·         Fact – Peyton has not been able to or won’t put any weight on her legs for a long time and won’t even attempt to roll over.

·         Fact – The neurologist talked to us about discontinuing the B-6 because high doses of B-6 have been linked to Neuropathy.

·         Fact – We discontinued her B-6 this past Monday.

·         Fact – On Wednesday, she ROLLED OVER.  Not once, not twice, but 20+ times. 

·         Fact – she did it again today

And those are the facts.

  

The Princess

I have been updating Facebook quite often and have not been blogging.  I know many of the readers are the same so I won’t go into great detail about the past few weeks.  

Poor Peyton has been thru quite the battle with the seizures.  At the end of March, she starting having lots and lots of seizures again.  Her ketones were good and we didn’t know what was going on.  With the help of her neurologist, we increased her Onfi dosage and started her on a new drug called Banzel.  Things have definitely calmed down with the seizures but we are still seeing more than we like.  Of course, if we had our way, she wouldn’t have ANY, but that doesn’t seem to be her journey right yet.  Her overall mood was pretty ugly during the bad seizure days but who can blame her.  She would be so tired from all the seizures wracking her poor little body and would finally doze off only to be jerked awake again by another stupid seizure.  There is nothing more helpless than watching your child seize.  There is NOTHING you can do, NOTHING you can say.  You just have to watch it and then when it’s over, all you can do is love on her and tell her it’s all ok.  They stun her, they confuse her and they make her angry.  I hate them.  They are mean. 

On a brighter note, Peyton continues to show us her little personality.  She is quite the princess and is very vocal with her likes and dislikes.  For example, she really likes her cartoons and please don’t get in her face when she is watching them.  She really likes her Kush toy that she can mash on and it vibrates and makes music and please don’t try to distract her with another toy when she is playing with her Kush toy (unless it’s a really cool toy, of course).  She doesn’t like being dirty and really likes how she feels right after a bath.  She likes being carried around the house so she can see what the rest of us are doing and recently we discovered she enjoys riding thru Wal-Mart while we push her in her kid cart.  She doesn’t like loud noisy crowds and the buzzer at basketball games tick her off but she is pretty tolerant since she seems to know she is there to see her big brother play ball. She likes (no LOVES) her Daddy.  He is hands down her favorite person on the planet and when she is upset and no one else can calm her down, he can.  I pretend like it miffs me that she favors him, but it doesn’t really.  It’s just further testament to the great dad that he is and how lucky we are to have him.  I always like making these like/dislike lists of hers because it reminds me how far she has come and how thankful we are that she has likes and dislikes and that we are getting the chance to see her little personality.

Oh, another dislike – don’t be messing with her hair unless your name is Mimi and you have a full understanding of how to style that wild curly hair of hers!!

We love her always and will treat her like the princess that she is forever.

Bumpity Bump Bump Bump

Peyton has been cruising along, doing new things, smiling more, and is just so much more content than we have ever seen her and I guess the Seizure Monster just couldn’t stand it and thought he would just show us what he can do and how devastating he can be to a 2 year old’s development.  The seizure monster makes me bitter and angry.  I don’t understand it.  I don’t understand the cruelty of it all.  It literally brings us to our knees to have to watch her have seizure after seizure after seizure.  Yesterday was actually a good day and she didn’t have any seizures till the evening and they were few and short, but today she woke up and they started with a vengeance.  The medication increase will take 6 weeks to complete so we just pray we see positive things after we complete the increase.  Her ketones were moderate on Monday so maybe this is playing a role??  It’s all one big guessing game and it just makes us crazy. 

We just want her to feel good and be happy and know how much we love her, but the seizures seem to rob her of all of that.  It’s not fair.  I know that life isn’t fair, but it’s especially cruel when it’s unfair to a child…..a child that hasn’t had a chance to giggle, play and just feel good.

Can you tell it’s a bad day??  I’m clearly in pity party mode so I am going to go regroup and refocus and be back later with a better attitude.  

Appointment Update

Peyton saw her neurologist in Chapel Hill on Friday and wowed him with her new abilities.  She grabbed a toy he was holding and she was quite alert during the visit!  He was pleased with the small developmental steps she has taken.  We discussed the recent seizure increase and we have decided it is a good idea to increase her Onfi Dosage (Onfi is the only seizure med she currently takes).  She has gained some weight in the past 3 months and this could definitely be affecting her seizures so we are going to double her dose.  This will take about 6 weeks to complete.  We wean up her dosage by 1/2 a tablet every two weeks.  We started the increase on Saturday and maybe saw a tiny bit of improvement on Sunday, but this morning has been tough.  Please keep her in your prayers and pray the seizures slow back down again as we increase the meds.

We met the new dietitian and really really liked her.  She is enthusiastic and knows a lot about the diet and knows a lot about all the latest research for the keto diet.  We reviewed Peyton's current calories and we aren't going to make any changes right now except maybe trying more solid foods so she can improve her chewing skills.

These heavy seizure days are hard on her and hard on us, too.  Things have been going so well lately and BAM!!, the seizures act up.  I hate and despise seizures.  They are mean and awful and one of the worse things that happens during her seizures is that she smiles really really big, so it's not a real smile, it's a seizure smile and I hate it.  It just seems so cruel and I don't understand why that has to happen.  These are some bumps in the road and I know things will settle down, but the bumps seem harder now that we don't have the amount of bumps that we used to.  We keep adjusting our normal and the normal keeps changing.

So, lots of good, bad and ugly to go around, but overall, things are more positive.  I will leave you with a real non-seizure related smile she gave us as we were leaving for Chapel Hill on Friday.  These are the things that keep us moving forward.