Seizures and Smiles

What a couple of months it has been!!!!  Peyton had fewer seizures in February than she has had since all this started back in January of 2010.  She actually had two stretches that lasted seven days and then several 3 and 4 day stretches.  It was GREAT!!!  In spite of the hospitalization for dehydration, the temporary feeding tube, the tonsillitis, and all the other little bugs that attacked her immune system.  So we go to Chapel Hill the first of March and bragged on how great she was doing and her neurologist was very pleased with her progress and even agreed to start weaning one of the two seizure meds she is on (the Keppra, which we never felt really helped her).  We also saw a new dietitian that same day and she was great.  She spent a long time with us and we decided it was time to wean Peyton back on to Dairy (ketogenically, of course!!!)  We formed a plan and then headed home…….

The VERY NEXT DAY the seizures started up again and she had an awful week or two.  She had more seizures in one day during that time then she did the whole month of February.  Talk about discouraged!!!!  We think maybe we were trying to make too many changes at one time…the dairy introduction and the wean down of the Keppra, so we stopped the wean down of the Keppra and kept at the dairy.  She is now totally back on Dairy again which makes the diet a little tastier for her.  She gets heavy cream and butter or Velveeta cheese mixed in with all her baby foods.  We will attempt the wean of the Keppra in another week or two.  The seizures have slowed back down again and she is currently on day 4 without one, so we’ll take it!!!! 

In other news, she has been approved for Cap-C, which means she qualifies for a nursing aid that will come to our house for up to 11 hours a day, depending on the need.  We are thrilled.  The process has begun and Peyton’s first nursing aid has been great!!!  We have some really great people at the nursing agency working with us and they are very understanding of what a difficult transition this can be but so far so good!

Peyton SMILED for real!!!  About two Saturdays ago, Mackenzie was talking to her and entertaining her and I heard Mackenzie squeal, “MOMMY, COME HERE, SHE’S SMILING”  I walk over with not much hope that is really what’s going on since a lot of times, when Peyton is having a seizure, she appears to be smiling, but it’s just the seizure.  But low and behold, Mackenzie is right, Peyton is SMILING, real smiles.  It was so awesome.  I grabbed my phone and got two cute pics of it which I will post below.  Mackenzie cried and cried tears of joy.  It was a precious precious moment.

Currently, Peyton is battling daily fevers.  It’s the strangest thing.  She woke up last Saturday with a high fever of 104 and throwing up, but she quickly got better and only felt bad for the day and by that night, the fever was gone and her tummy was fine.  Every day since, she will wake up with a fever (anywhere from 100 – 102) and by 9:30 it’s gone.  We called the ped and they said it is probably the virus from last weekend slowing leaving her body.  We are hoping the fevers go away and don’t end up being something more serious. 

Happy Weekend to everyone!!!    

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!

Ipad and squash

 She likes the IPad 2:-)

She doesn't like the Squash.

That Connection

Peyton has had quite a month.  After her successful eye procedure, she got her very first fever.  It was 102.5.  I was terrified her seizures would just go crazy, but they didn’t!!!  They actually decreased when her fever was really high.  She had an infection caused by the drainage from all the junk (for lack of a better medical term) that was released when her tear duct was cleaned out.  She went on her first antibiotic and it cleared right up. 

Christmas was great.  Got to see lots of family and had lots of get togethers.  Peyton had a little cough before Christmas that got worse thru the holidays and we took her to the pediatrician the week after Christmas because she had started running a low grade fever.  She had Pneumonia.  We caught it early so they loaded her up with more antibiotics.  The seizures did act up this time but they were manageable. 

So, fast forward to now and the pneumonia is gone, her new kid cart and stander arrive Monday and we are soooo excited about it.  Who ever thought I would be this excited to get special needs equipment in my house???   We have been using loaners and I am eternally grateful for these, but still very excited about the new stuff!

Some sweet moments lately….she has an awareness of us that hasn’t been present before.  She will follow us with her eyes if we walk by and she even smiled at Ed this week when he was playing with her.  The kids and I got some little smiles out of her this morning.  How to explain how this makes me feel is difficult….a year ago, I was praying that the seizures would stop and she would be a completely normal child…..now, I pray for the seizures to stop and for Peyton to just smile at us and know we love her – yes, I still want her to develop normally, but that is vastly less important to me now – I just want us to have that emotional connection with her.  This is more important to me than her sitting, crawling, walking, saying her ABC’s or meeting every milestone.  I don’t mean we aren’t going to continue working with her every single day to meet her milestones, it just means that I’m a little more patient with the milestones than I am with getting that emotional connection.   Of course, I may change my tune after she’s been smiling at babbling at us for a few months, but I reserve the right for future impatience and complainingJ

Will post some Christmas pics later this weekend!