Before and After

This photo was taken about 6 weeks ago and Peyton couldn't really hold herself up enough to even lean on the chair to keep her head up...

I took these pics this past weekend and just look at the difference in her head & trunk strength!!

Isn't she awesome?

AFO's

Peyton got her AFO’s today!!!  She did so well when we had them fitted on her this morning.  These are going to help her so much and give her some necessary stability for standing and eventually walking.  They are very stylish too with the pretty butterflies!

I had posted previously about the movements she was having in her sleep and her neurologist having us increase her dose of B-6 by 150 mg.  This actually did work for a few days, but last night the weird movements came back again and she is having them today, too.  So, Ed got a video of it and we emailed it to her neurologist.  He does feel the movements are suspicious for infantile spasms but the only way to really tell will be with an EEG.  We will increase her B-6 dose again and see if that helps and then in another week or so, if they continue, we will take her to Chapel Hill so they can catch the movements on an EEG.  We are praying they resolve with this next increase of B-6.

In other news, she continues to be her cute self and is just doing great with all her therapies.  She enjoys playing with her toys and tends to get bored when there is not a person or toy around to entertain her.  I tell ya, we are so happy to see her reacting to toys and to us that we will act like fools and cut cartwheels and stand on our heads just to see her enjoy being entertained.  The diet is going well and she got to eat eggs this week.  She didn’t much care for the texture but seemed to like the taste.  We are working our way away from pureed foods and she seems to be enjoying the more chunky stuff!!

This is Peyton being entertained by her Mimi (who will also do cartwheels and headstands to entertain her!!) Notice her head and trunk control - Peyton's, not Mimi's:-)

Sweet Sleepy Baby

Please keep Peyton in your prayers and pray these movements we are seeing are not those awful spasms and that they will go away.

The Battle Continues

After my last post, Peyton continued to have 4 – 5 seizures a day.  Last week was quite eventful.  She was a little crabby last weekend and I just attributed it to the seizure increase, because that would make anyone crabby.  Last Monday morning I was at work and Peyton’s nurse called to tell me Peyton was screaming at the top of her lungs and nothing would calm her.  Ed was close by so he went back home and he couldn’t calm her either.  The screaming continued till I got home that evening and then every time she would nod off to sleep, she would jerk herself awake and start screaming again – I’m talking loud blood curdling horror movie screams.  Needless to say, no one got any sleep.  On Tuesday, we took her in to see the pediatrician and she had a sore throat and a fever.  No strep, just viral.  As thankful as we were for the source of her discomfort, there wasn’t much we could do for her except Tylenol.  She screamed on and off until Wednesday afternoon and finally she calmed down and is almost back to her normal self, just still running a low grade fever in the mornings. 

Peyton had an appointment with the dietitian last week and we have made some adjustments to her diet.  Her BMI is too high and her weight is outpacing her height.  Hopefully, the adjustments will help with the seizures and we will get some long seizure free stretches again. 

We have been seeing some subtle movements while she is falling asleep & waking up.  She will tense up and then release, tense up then release.  This is reminiscent of Infantile Spasms (although much more subtle than what she had in the beginning) so I contacted Dr. Tennison (her neurologist) yesterday.  I emailed a video of these strange movements.  He watched it and agreed the movements were really subtle, but something we need to keep an eye on.  For now, we are increasing her Vitamin B-6 to see if this will do anything helpful.  Sometimes, it feels like we are just shooting in the dark trying to find solutions.  Regardless, we will try this and if things continue then we will contact him again and discuss other options (not sure what these options are, but determined not to focus on that till we give this a week or two to see if things settle down).  If you haven’t read my past posts and don’t know what Infantile Spasms are, you can Google it and be as horrified as we are that she might be having them again.  There was a time back when all the seizures started that she was having Infantile Spasms but they were quickly controlled with Prednisolone and we haven’t seen them since and hope to never ever see them again.  Please say a prayer that this isn’t what is going on.  All Seizures are horrible, but these are especially horrible.

Peyton has a stander and she is in it for about an hour 5 – 6 days a week.  There is some concern over her ankles and feet so we went this week and had her fitted for AFO’s (Ankle Foot Orthosis)  These will help her stand and make progress towards walking eventually.  It was cool to watch them make the casts for the AFO’s and she did so good!!  I am excited about getting the AFO’s because I am all for anything that will help her progress and develop.

She has a new favorite toy – it’s a lady bug toy with crinkly wings and she LOVES it.  It is the first time we have seen her use both hands to play with anything.  She even falls asleep at night with it tucked under her little arm.  It is the sweetest thing.  She is still giving us smiles daily and we are hoping for some giggles soon!!

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!!