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.

Our Amazing Girl - Happy Eyes

Peyton had a Swallow Study done yesterday at Mission Hospital.  This was because there has been some concern of aspiration when she eats her food and drinks her bottle due to some coughing we have observed.  Needless to say, we were not looking forward to this mostly because she couldn’t eat that morning till the study time – 10am!! Those of you that know Peyton know that she is a schedule girl and really likes her routine.  Getting her out of her routine can sometimes have disastrous results – like hours and hours and hours of crying. Soooooo….needless to say we were less than thrilled about the waiting till 10am to feed her!! Miraculously, she handled the lack of food well and was only starting to fuss a little bit when we actually went in for the study.  I was fascinated with the whole process.  They had us bring Peyton’s food with us – a bottle, her regular food and her sippy cup (YES, a sippy cup – we’ll get to that progress in a minute!).  They put the barium in her bottle and a little bit of barium mixed with her food.  I was able to go in with her and give her the bottle with the barium and she was hungry enough that she took it even tho’ it is not the best tasting stuff.  I then fed her a few bites of her food mixed with barium.  Thankfully, they did not see any signs of aspiration and she handled both the bottle and food well.  It appears she may be outgrowing her bottle so we discussed some other options for giving her formula and will work with her speech therapist towards this.  She is still at a higher risk for aspiration due to her many delays and other issues, but we are very thankful for the news that this does not appear to be a current problem for her. 

On to the afore mentioned sippy cup usage – girlfriend is using a sippy cup now with water in it.  She holds on to the handles and needs minimal support from us to be able to drink out of it.  It is amazing to see since 3 months ago, she had absolutely zero interest in using a sippy cup, much less using it independently.  Sometimes, she even swats our hands away when she is trying to use it.  We love to see that attitude!

Check out the mad sippy cup skills this girl has!

And another thing…..she is occasionally sitting unassisted for short periods of time.  Not every day, but usually several times a week so we know it’s just not a one hit wonder as many things are with her.  This is exciting to see and just one more notch on her development belt! 

Sitting unassisted

Her personality emerges more and more and although we don’t see big smiles and giggles, we do see little smiles and happy eyes.  We are just thankful to see her express herself and know that she is content.  Most of the first two years of her life were spent with us never knowing if she was happy, sad, miserable or in pain so it’s really been a blessing to be able to see contentment in her eyes.

getting ready to take a ride with her favorite brother

 In the Stander

Grabbing her toys

Little bit grumpy during OT:-)

We go to Chapel Hill tomorrow for a routine appointment with her neurologist and dietitian.  I am anxious for him to see her and all the progress she has made since he last laid eyes on her six months ago at the awful MRI appointment.  We will be talking to him about the increase we have seen in her seizures recently and the fact that she is spilling large ketones when she’s having the seizures.  Worries me that maybe the keto diet is not working as well as it used to.  I surely don’t want to get back on the seizure meds merry go round. 

I will post an update about the appointment over the weekend instead of two months from now which is sometimes my habit!!  

Peyton's World

Peyton has a new therapist coming weekly now.  She is a speech therapist and it is amazing!  She is working with Peyton on communication skills and feeding.  This is just so cool to see.  Initially, she had Peyton choosing objects she wanted.  She would hold two toys in front of her and let her choose and Peyton will pick the one she wants.  If that isn’t awesome enough, this past Friday she had her choosing between a bell and a block and Peyton would choose correctly each time.  We are seeing a side of Peyton we just didn’t know to tap into and it is clear to me that she is headed towards being able to communicate her needs and wants to us.  This is exciting stuff people!!

Her other therapies are going well too and we are seeing positive things happening.  She is getting closer and closer to maintaining balance while sitting and even starting to push on her hands when she is on her tummy.  Head control is fully achieved and it’s rare that she isn’t holding it up.  She enjoys family outings more and more as long there aren’t too many people and as long as we don’t stay too long. 

Big news - today when the dietitian came to check in on her, Peyton has gained some weight and and and……..her head circumference has grown by 1.1 cm since December.  This may seem like a non-event, but it’s truly a big deal!!  She went about 9 – 12 months with no growth and this has been a huge concern, but since the calorie increase, she is doing more and more and her little brain is growing. 

We noticed about a week ago that her eyes are starting to cross a bit when she tries to focus and she is trying to focus a lot more lately.  We contacted her neurologist and he said it could be accommodative spasms from her increased attempt to focus.  We take her in next week to her local ophthalmologist to get her eyes checked again.  She may end up with some little glasses, but this is ok with us if it helps her see and focus more clearly!!

So, a lot to report on little miss and we are forever optimistic of the great things in store for our princess.  It’s hard to feel sorry for ourselves when we see God clearly at work in her life.  Yes, she has some challenges to face that you never ever want your child to have to face, but as I have said many times before, we are always grateful our family was blessed with our sweet little Peyton.  We couldn’t imagine life without her!!

 Just hanging out.

Peyton and Mackenzie playing with one of Peyton's new favorite things....aluminum foil.

Blake teaching Peyton how to use the laptop.

Christmas, Seizures and Genetics

It’s been a while since I blogged just because life gets in the way.  Let me break down the past few months.

·         Christmas was great.  We enjoyed all the family time and fun.  Peyton seemed to enjoy her toys this year and we found out she likes shiny wrapping paper.  It was really nice that she was so much more aware this year and loved having her family around her.

·         Seizures – we have had some ups and downs but the bottom line is that she continues to have them, sometimes one a day, sometimes 10 a day and on one really awful day, she had close to 70.  We recently completed the wean of Phenobarbital and she did really well with it and we are definitely seeing her ‘wake up’ more and more.  She is alert a lot of time and is tracking things much better than before.  Her co-ordination is better than it was and she tries a lot harder to grasp at things like her bottle, her spoon, and her toys.  She gets frustrated sometimes and cries and we think this is simply because she wants to do things that her body will not allow her to do.

·         We received a call a few weeks ago from the Genetics Department at Chapel Hill Children’s Hospital - Peyton has been invited to participate in a study where they will look at her genetic make-up.  It is called Whole Exome Sequencing (WES)  This is a paragraph from the NCGenes website that describes what the study is about.

“Technological developments in the field of genomics now afford the opportunity to define the complete sequence of an individual's genome in a rapid and affordable manner. Such "whole genome sequencing" and its simpler corollary, "whole exome sequencing" (WES), have already established themselves as powerful research tools. The next step in the evolution of this technology is its direct application in the clinical arena to realize improved human health. Yet the translation of sophisticated genomic technology into the clinical sphere is complex and presents many challenges involving the technical, logistical, psychosocial and ethical realms.”

Our purpose in wanting to participate in this study is to hopefully gain more information about Peyton’s condition and what caused it.  We realize in the grand scheme of things that it really does not matter, but knowing what caused this is going to give us some closure maybe or just give it a name.  Her neurologist has always said her condition is most likely due to some underlying undiagnosed genetic variance so this is a wonderful opportunity to gain some helpful information for Peyton and hopefully for other children in the future who may have this same genetic variance.  We go tomorrow for her appointment with the geneticist and to have her blood drawn.  She will be in the study for four years and it will basically consist of several phone interviews over the course of the next few years and her case will be revisited annually to see if further testing has become available.  We will be able to go back in 3 to 4 months for a follow up appointment to get results from the tests they do.  We are quite anxious to get whatever information we can.  Please say a prayer for us as we travel to Chapel Hill tomorrow.

·         This past Sunday, my dad, who is a pastor at a local church, invited my family to come and speak about the joys of raising a special needs child for Pro-Life Sunday.  We were very honored that he asked us to come and in thinking and reflecting over the past two years, I realized how much more joy we have had than heartache.  Sure, we have had lots of hard, trying and scary days, but by and far, the good days have far outweighed the bad.  Peyton has brought so many positive things to our lives and we sometimes forget all the good and focus on the bad.  It was a good experience for our family and allowed us to reflect on all the things we have to be thankful for and how God has blessed our family with the gift of Peyton.

   

The rest of the family is doing well. Both kids are enjoying school and both are having a really good year.  I had the flu a few weeks ago and Super Dad took care of everything while I quarantined myself for a week.  Thankfully, no one else got infected and we have all been well since then.  Here are some current pics….just a hodge podge of this and that.

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