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!!