Marching On

Still feeling a little raw from the fallout of the MRI bomb, but it’s time to move forward.  We don’t really have the luxury of moping around for too long.  There are too many other things to do and take care of and moping and being sad just really hinders us in all areas.  So we nurse our broken hearts and let the tears fall and we become even more determined to do every single thing we can to help Peyton reach her full potential.  The MRI doesn’t really change anything in how we care for her or what therapies she gets or how much we love her.  The MRI was more of a punch in the gut to Ed and I as there was some finality in REALLY accepting that Peyton wasn’t just going to snap out of all of this, quit having seizures and go on to live a normal life.  We really really do have a disabled child and she will be affected her entire life by this.  Even if the seizures stopped tomorrow, whatever causes those seizures is certainly still a problem.  This is reality. 

BUT

I believe (we believe) with all our hearts that Peyton is capable of great things and there is no MRI on earth that will convince me any differently.  She is so loved and so cared for and so prayed over and we KNOW this makes a difference in what she will accomplish in her life. I don’t go against conventional medicine and what the MRI showed us is unfortunately very real, but no one can tell us with any certainty that she can’t do great things, in whatever capacity that might be.

We haven’t really talked to Blake and Mackenzie about all we learned at the visit on Monday, except to tell them she wouldn’t be a candidate for surgery.  You know the funny thing?  They were relieved their baby sister wouldn’t have to have surgery.  Even if we did tell them all about the visit, they wouldn’t be heart broken or sad or glum.  As far as they are concerned, they have accepted her disabilities and they just keep on loving her.  I know for us it’s a little different with all the complexities that go with being the parent of a child with such severe disabilities, but their joy and love rubs off on me and keeps me grounded when it would otherwise be so easy to curl up in the fetal position and stay there. 

As soon as I posted the blog about the MRI, text messages from friends & family came rolling in, along with calls and visits.  Like immediately.  We are blessed beyond measure with the people in our lives that love us and love our kids and support us unconditionally.  It truly lifts us up in the darkest of times.  God really watches over us even when I am not talking to him like I should.  I sometimes get a little angry at him over Peyton’s suffering.  I wonder if maybe she is being punished for the wrongs I have done in my life, but I know that’s not how God works.  I still don’t see the plan in all of this, but I know there is one and I know Peyton has and will continue to touch lives all around her. 

Thank you for continuing to read Peyton’s story and sending so many prayers our way.  

MRI.......maybe not such a good idea after all.

Yesterday was the long awaited MRI.  We saw the neurologist immediately after.

Surgery is not an option and probably won’t ever be. 

The MRI showed that her brain has not developed very much since birth (we knew this, but seeing it on a MRI makes it more real and possibly more awful)

She will never be a normally functioning person (we knew this too) – our beautiful girl will have a lifetime of pretty severe challenges.

I don’t see a plan in all of this (but in my heart I know there is one)

I want to say something inspirational and good and I’m sure I will….just not today.

Blessings

A few little positive tid bits to share…..

·    Peyton’s tummy issues are getting better.  After speaking with her dietitian we think she may be lactose intolerant.  If you recall, when she was in infant she had a dairy allergy and when started the keto diet, we still had her off of dairy.  We weaned her back on to dairy about six months ago and most of her meals consist of butter and heavy cream.  We have cut out the butter and cream and are using oils, avocado, and other non-dairy fats and we are already seeing a huge difference after just 2 days.  She was having screaming fits from the tummy pain and although she is still fussy at times, the screaming fits are starting to subside. 

·        Since Peyton started having seizures at 10 weeks old, we rarely, if ever, let her out of our sight.  This means she has slept in our bed since the beginning and yeah yeah yeah, I know how bad a habit this can be but we were truly terrified to leave her alone at all and especially at night.  Just recently, we have realized that she is more than ready for her own ‘space’ and a more scheduled routine at night.  So now she has her very own toddler bed in our room in my line of vision and she has slept in it for almost a week and is doing GREAT.  She rarely if ever has seizures at night so this is not really a concern.  We purchased a video monitor and we can watch her after we put her to bed.  It’s a good feeling to do something as ‘normal’ as getting her adjusted to sleeping in her own bed.   Before she was born, I had picked out the cutest bedding and was so excited about using it.  After the seizures started, I had a hard time even looking at that bedding because it represented a loss of the ‘normal’ baby girl we had expected and planned for.  I actually boxed it up and put it in the attic (couldn’t quite bring myself to give it away).  Well, I have pulled that bedding back out again and looked it straight in the eye and put it on her sweet little toddler bed.  It is just as cute as it was when I picked it out and being able to use that bedding again healed something inside of me.  Kind of like looking the seizure monster in the face, sticking my tongue out and being thankful for the little girl that God chose to bless us with. 

It's a Crazy Life

So we are just wild and crazy right now!  We have had our house on the market for the better part of 3 years, basically because we have just outgrown it.  Even before Peyton came along, we knew we needed something a little bigger.  Since Peyton came along, we are even more crowded.  It’s been on the market for so long that we have kind of gotten to the point where we just didn’t think it would ever sell, but we just kept trying.  Well…..it finally sold and is currently under contract.  This is all well and good, but now comes the task of finding somewhere for all five of us to live.  It’s not like we can just shack up with family or friends till the right place comes along (all five of us is a lot to takeJ) so we have been on a house hunting mission to find the right place.  We did find another house within a few miles of where we live now so the kids can stay in the same school district.  We are in the midst of loan pre-approvals, inspections, appraisals, trying to get all our dates lined up, and making sure we aren’t suddenly homeless when we close on the sale of our house.  I just thought our life was chaotic – right now chaotic seems like a distant & pleasant memory because things are full on CRAZY!!  We have lived in our house for 11 years and this is the longest I have ever lived anywhere.  I moved around a lot as a child because my Dad was a missionary and then a pastor when we moved back to the United States.  All the moving and change never bothered me much (mostly because Mom and Dad did all the work!!) but now I am just in awe of my parents and all the times we have packed up and moved.  It’s A LOT of work!!!!  I’m a little daunted by the whole thing, but I know in 2 months, this will all be behind us and we will be peacefully living in our new house…..Right?????

On to the baby girl (the real reason you read this blog and so nicely allow me to throw in all the other stuff).  She is doing pretty well seizure wise, but she is having tummy issues.  The Ketogenic diet can typically cause constipation and it does with Peyton.  She is just miserable lots of times with her tummy.  Of course, we have to be careful what we give her because of the restrictions of the diet, but I am in touch with her dietitian to see if she has any ideas.  It has caused many many sleepless nights for her (and for us) so we are praying she can get some relief soon.  I found a ketogenic approved fennel tea that she can have so we tried this last night and it did seem to help her.

We go to Chapel Hill on September 24^th for Peyton to have a MRI with a follow up appointment the same day with her neurologist.  The MRI will focus on the left side of the brain where the seizures seem to be coming from.   This may or may not determine whether Peyton could be a candidate for brain surgery.  I don’t know yet how I feel about wanting her to be a candidate for surgery.  I know that we will leave no stone unturned in our quest for Peyton to have the best life possible so I guess I do want her to be a surgical candidate if it could mean more progress.  It is a conflicting feeling to want your 2 year old baby to be a candidate for brain surgery.  I haven’t quite figured out how to process all my mixed emotions on this.  I have read many success stories about pediatric brain surgery and how development can soar and this is our dream.  I want to come to this blog one day and run out of room telling about all the soaring Peyton is doing developmentally.  I am allowed to want that.  Acceptance is a theme in our daily life and we do accept that Peyton is not like other children and that Peyton is most likely going to have a lifetime of issues due to these stupid seizures, but even though we accept it, we will keep pushing for more answers and ways to further her development. 

Check out the cute video that Peyton's nurse took of her.  She likes to make music:-)