Wow, it's almost been a month since I've posted anything! Time is
flying and Piper is keeping us on our toes. Since the weekend of her
birthday she hasn't been herself at all. Up until last week she wasn't
playing or eating much and really just seemed miserable. We noticed
that she has 4-6 teeth coming in so we thought that was the cause. Her
teeth have still not come through so now we think she was having
trouble with allergies. Whatever the cause it has really taken a toll
on her. With being sick she has a huge increase in seizures. The new
med seems to be preventing the big seizures so she just has spasms.
The problem is she is back up to having 150-200 a day. This leaves her
no time to feel like playing or exercising. She had no head control up
until just a few days ago. She basically regressed back to where we
This week she started playing a little and her appetite came back
until yesterday evening. She was up all night coughing, wheezing,
runny nose , sneezing and threw up twice. She had a fever this morning
and we took her to the pediatrician. He seems to think its a sinus
infection so we started an antibiotic and hopefully she won't be
allergic like I am. We hope this will help with the breathing issues,
which are terrifying especially since she has poor head control and
the fear of her choking on all the junk in there. Let's just say none
of us slept well last night. She seems a little happier now so we will
see how she does the rest of the week. We are supposed to go on a
family vacation to the beach on Friday so praying we are able to go.
We sure do need one!
As far as seizure control we met with he neurologist last week. Since
she is basically just having spasms we don't have many options at this
point for new meds. We are going to up her dose of the med that helps
these to see if we can control them better. Our only other option is a
medicine that has a high death rate in children under 2. Uh, I think
we will pass on that for now. We are finally taking her off
phenobarbital which we have been trying to do for months now. Praying
we will see a happier little girl. Last time we started the wean we
saw an enormous spike in seizures so we are a little scared.
It's a lot to keep up with, believe me! Just keeping track of medicine
and dosage is a full time job now she has an antibiotic, sleeping aid
and multivitamin on top of everything else.
We just ordered her wheelchair/stroller which will really help us out.
Thanks to the donations from the west high alumni and other friends we
are able to cover the cost for her equipment and her new car seat. We
can't thank you guys enough!!!
Piper did get to have her first "play date" with her buddies Max and
Rylan this weekend and it was a lot of fun. Piper slept most of the
time but we had fun!
I'll keep everyone updated!