PANIC

I am panicked today. 

Peyton is doing better. The feeding tube is out.  She is having fewer seizures (I’m actually afraid to type how few).  She is starting to babble and even can imitate a few sounds.  She is doing a tiny bit better.  She is really really starting to hold her head up more and more.  She has a long way to go but we are seeing baby steps of progress. 

I am panicked.  I am nervous.  I am afraid to be optimistic!!!  What is wrong with me???  I feel like if I get too hopeful that I am setting us up for heartbreak.  I want so much for her.  I am so afraid for her.  

I need to relax.  I need to take a breath.  I need to enjoy her.  I need to enjoy watching Ed and the kids enjoy her. 

I am still afraid.  I have a knot in my stomach when I think about the fewer seizures, the babbling, the head control.  I am terrified.  I want to just be happy and enjoy all these good things.

Fear sucks.  So does the seizure monster.

I am working on the fear and I will always hate the seizure monster.

Next post will be nothing but positivity…..I promise and some cute pictures. 

Actually, here's one of my favs now....

The Good and The Bad

I will start with the bad since I want to end on a good note.

Peyton is still not eating great.  We got excited yesterday because she took some bottle and some applesauce, but this was short lived progress.  She wouldn’t eat anything the rest of the day and we had to feed her thru the tube.  Her seizures are acting up today and who knows why.  I just know I hate seizures and they are mean and stupid.  So she isn’t eating today either, but we will keep on trying.   I don’t know what all this means long term, but I don’t want to think in the long term right now….I will stick with the short term thank you very much.

The good news….which is bittersweet since she is having seizures again today, but let’s be positive, shall we?

Peyton went ONE WHOLE WEEK with no seizures.  This is the longest stretch since they started.  We are thrilled with this.  This is progress and this is the diet.  The ketogenic diet is truly wonderful and as big of a pain as it can be, I don’t want to imagine this past year without it!!!

Developmentally, Peyton hasn’t made huge strides, but she has made small strides.  She still can’t hold her head up, but she tries.  6 months ago she didn’t try.  She will touch the IPad when I bring up the baby apps.  6 months ago, she wouldn’t touch it.  She shows interest in the world around her.  6 months ago she didn’t.  I have to put all this down on paper sometimes so I can remind myself that she is making progress. 

I guess I am in a bit of a funk today.   Life with seizures is a roller coaster.  I wish our family could step off the roller coaster.  I don’t like this roller coaster. 

I said I wanted to end on a positive note, but I guess I didn’t.  Seizures have that effect.

Home Again Home Again

So our quick little overnight hospital stay turned into a three day stay.  Peyton got nice and hydrated then quit eating.....at all!!  She has not been eating well for the past few weeks so this was a concern and had obviously lent to the dehydration.  A temporary feeding tube was put in and we ended up coming home with the tube in.  We are still trying to get her to eat, but she is teething something fierce and not at all interested.  We are giving her the calories she won't eat during the day thru the tube and that's going well, but not something we want to do permanently, but of course, we will do what we need to do for Peyton!

She ended up in the pediatrician's office today because she has been crying inconsolably....I mean for hours on end.  We think her teeth may be the culprit, but don't really know.  The ped did blood work, checked her all over and found nothing wrong so we are going to pray she feels better from those teeth very soon!  If the crying continues, we take her back again tomorrow.

This is a pic of her in the hospital loving on her "dollie"  Her big brother Blake, brought this to her and she instantly liked it.  Not much catches her attention, but Dollie sure has!!

In the hospital

Peyton was admitted to the hospital this afternoon for dehydration. She has not been feeling well for about a week with a cold. She hasn't been eating very well either....due to drainage from the cold and some reflux issues. She woke up this morning with a temp of 101.4 and was so lethargic and not eating at all. We took her to the peds office and he decided to admit her for some IV fluids. She has been getting fluids for several hours now and we can already see a big difference. Her color is much better and she has taken some bottle since we arrived. Praying this is a quick little visit and that we will be home again tomorrow. This is her first hospital visit that hasn't been due to her seizures so it's a little strange not to have her hooked up to the EEG but we aren't complaining!