Weight is coming back up!!

So happy, that on yesterday my precious little one had gained a pound of her weight back!  Still not what I expected, but it is a step in the right direction.  She also had occupational therapy yesterday and did really well!  So happy for her, for us!!  We are going to relax again today and enjoy the blessing of a air conditioned home!!

More to come...

Quality time!!

That's right!  We got it in today!  We went to see Cars 2, first viewing was sold out and I thought we were getting there on time!  We were able to get tickets for the second show!  If you're thinking of going, go!!  Very fun movie....we love  Cars and was not let down with this one!!

At first, my princess thought we were leaving without seeing a movie, she was looking sad, I explained to her that we had to come back because the first movie was crowded and sold out!  That movie theater was a welcomed sight when we got back.  I thoroughly enjoyed my day out with my daughter.  No one else, just the two of us!!

More to come...

Tough cookie!

I think my little princess is about as tough as they come!! Really!!!! We are still working at the scoliosis jacket...talk about a process!  She is still resisting.  I am determined and prayerful that she will wear it on a daily basis, does not matter if it's day or night, one hour or 8.  Even if I have to put it on her for an hour, which is all she put up with last night, and take it off for a few hours then back on again.  Whatever it takes to avoid any kind of spinal surgery...we're gonna do it!! Persistence is KEY!!

Mommy is excited about taking her to see Cars 2 this weekend!! That should be a cool treat for us both, and an escape from the everyday things!

More to come...

Scoliosis jacket/ night time splints update

Progress has been made, finally got the little darling to sleep ONE full night in her jacket!!! YAY!  I really think it was by accident on HER part.  She was sleepy and it was going past her bedtime when I put it on her Tuesday night ( 6.7.11 ), I was so elated that we got a full night.  She had other things in mind, because since that night she has NOT made a full night again, luckily we had and ortho appointment this past Friday, and he said that the jacket is doing its job, when she's in it, her 19 degree curve was down to under 5 degrees, shown during her x-ray!!  Happy about that!  I asked if it was okay to have her wear it during the day while she's home lounging, to get her acclimated to it...YES!  So, we shall see!

On another note, the night time splints, which we've had no problems with getting her to sleep in, rubbed her foot Tuesday night causing a red spot on her heel that still hasn't cleared, but the ones on her ankles have.  Dr. said to not put them back on until that spot is gone.  He stated that she moved around a lot that night causing the friction,and with her skin being so soft that caused the bruising. So, as you can see, its constantly something, but as always, we're pressing through it!!!

More to come...

Weight loss!

On last week, my princess had to go in for her bi-monthly weight check.  The first since her cluster seizures and cold!  Unbelievably, my sweet girl had lost a total of 5 lbs.  I was devastated so that I had to just sit in the parking lot once we were loaded  just to gather my thoughts and compose myself.  To hear this just took something out of me.  We've been working so hard to get her weight up, now she was down  2 lbs more than when we first started with the high cal PediaSure/ 4 per day ( sometimes she"ll manage 3 ) and trying to  get her weight up so that she doesn't have to have a tube placed.

God is AWESOME and there is power in His name and we are going to get that weight back up.  We are now back to monthly weight checks.  So by the end of June she will have gained at least 2 lbs, believing it!

We're striving!!

More to come...

Busy schedule

Since the last post, my little one has been free from noticed seizure activity.  I say noticed because a previous EEG showed that she has "quick fires" while asleep.  Even though she has not had pronounced activity, we have been very busy with making sure her scoliosis jacket is a good fit for her, and that the night time splints meet the specifications of or orthopedic specialist.  Not, the case, the jacket is back with the orthotics office to get some adjustments made and doctor does NOT want her sleeping in the splints just yet, just place them on her for two hours at a time and take them on to make sure there are no pressure spots or anything to cause irritation to her ankles.

My sweet daughter was only able to go to school two days this week, because she has been under the weather with a little cold, she's finally coming around...its been a battle.
Not only has the cold been bothersome to her, the Zonegran has had her in a major fog, since the dosage had to be increased.  Now, per the instructions of her neurologist, she will be weaned off of it over the next three weeks and re-introduced to the Topamax.  Just another complicated schedule this mom has to keep  up with!! OH JOY!!  It will be done, because it has to, and with God as the center of our lives, this and everything else that comes our way will work out just fine.

More to come...

Easter Sunday

We had a very unexpected turn in our Easter weekend plans.  On Saturday we had a nice day out, my princess, her best friend/cousin and I went to the movies to see Rio.  Awesome movie by the way.  Afterwards we did a little shopping to finish up with the holiday weekend meal. Came home still having a decent Saturday, until late that night!!

She had fallen to sleep around 8 that evening and was back awake around 10, I thought it was kind of strange that she would wake back up after the day we had.  So, I was busy cooking and making preparations for Sunday, doing my hair, laundry and other "mommy" things!  I walked into the room to check on her around 11:30 pm and she was looking at me in such a spaced out way, and she had lots of drool coming from her mouth...I had the gut feeling that my princess was having a seizure, I tried to get her attention and she kind of turned her head and was just staring at the ceiling then her eye started to twitch.  I called one of my sisters to let her know that my princess was having a very involved seizure.  Before I knew it she had two aunts in the house with help, for moral support and thank God, one is a nurse.

The first seizure only lasted about 3 minutes, then my baby started seizing again.  Another short one, my nurse sister called the neurologist to let them know that she was involved and having "clustering seizures", I had never read up on that or heard of it until she mentioned it to the doctor.  For the first time since my baby had been diagnosed with epilepsy and being on a seizure medicine, Topamax and was weened off, then just this past March being place on another, Zonegran, had her Diastat had to be administered in our home.  That was done around 12:30 am.  I was so devastated and knew I could NOT let her see the hurt and frustration in my eyes. Its amazing how a child knows MOM so well that they can tell its something going on without her uttering a word. She fell asleep shortly afterwards, but still had some activity, even while the drug was been given.  This mom couldn't fall asleep until 3:30 am, for watching her princess!

Needless to say, she was home from school today, still kind of groggy and drowsy from the Diastat coupled with the Zonegran.  We got a call today from the nurse at her neurologists office to see how she was doing and to let us know that per doctor's orders the one per night capsule ( opened, taken with ice cream, smoothie, whatever works )  has been upped to two.  I told her that its already hard to get her to take one, now we have to war over two.

As always, we will press our way through this too!

More to come...