Wordless Wednesday

I never seem to remember! Oh well, MY Princess!

More to come...

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!!

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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...