This is a tough one...

I've been taking my time to sit down and compose this blog.  I had to call my mom and one of my sisters has been constantly giving me supportive pep talks.  I didn't cry at my daughter's orthopedic appointment this past Tuesday, but wanted to after hearing the doctors report.  This appointment was made because I had expressed concern to her physical therapist about her foot and she along with another therapist had concerns about her back and that maybe she had scoliosis!

Arriving at the appointment, she had to have ex-rays done, I mean plenty of them in different positions; back, side, legs straight, feet pulled up... So when the doctor came in, I knew instantly he had something to tell us.  There is what he called a "19 degree curve in her spine and she will have to wear a scoliosis jacket at night for the next few years, its not a significant curve and we are catching it early, thanks to watching her and her therapies".

Her ankle: will have to have surgery by the time she's 10, unless her foot ( ankle ) starts to swell, the calluses turn red and are bruised/irritated.  He was saying all of this and I'm looking at my 'baby' on that examine table like "OMG, another surgery!"...thinking she'll be 10 in December...then he explains the "gluing of the ankle"..which brought the tears, but I held them back, so that I wouldn't cry in front of her.  The "gluing" is major 'bony' work, she will have a pin in ankle to hold her foot straight and another heel cord lengthening to help release and not cause her foot to turn.  She will also have to have a multi podus boot, to sleep in as well!  That's going to take some getting used to for the both of us.

That was my Tuesday in a very hard nutshell.  So, tomorrow, we will be on our way to be fitted for the jacket and the boot!  Afterwards, I have to let her have some fun, and I will too!  We are going to see the new Easter movie, Hop!

More to come...

Today has been one of those days...

It's Monday...a cool and dreary Monday!  We have a busy day tomorrow, a trip that 2 hours one way to see my princess' orthopedic specialist.  That's the main reason I decided today would be a day of us not leaving the house and just hanging out relaxing, watching TV.  Believe it or not the little one is into Twilight ( mommy too ), that's what she's watching now as I compose this blog. 

Will definitely post updates tomorrow on how things go at this appointment, because her physical therapist has some concerns about scoliosis and her left ankle bone is protruding and her foot seems to be turning outward more.  She's requesting that the doctor changes her to a multi podus boot ( i'm assuming it would be similar to this or this one ) because its softer and she doesn't think the harder plastic AFO's are working for her now.  

It always seems to be one thing or the next, but we are still striving...not giving up!

More to come...

My princess...

Love her dearly!!  We had a long day on Monday...what a way to start off our Spring Break!  God is in the small stuff...on yesterday, my princess had to go to Children's Hospital ( great place, excellent doctors ) for an appointment with the neurologist there!  I didn't post about this, but a couple of weeks back she had these little jerks and had her head turned in one direction...everything in me said it was a seizure again...didn't want it to be but that motherly instinct said it was.  Made and appointment to see them again and doctor ordered an EEG, our routine follow up turned into a three hour appointment.  Results will be back at the end of the week!  However, her doctor put her back on a seizure med a lower dose than the one she was previously on and reassured that he did not want her permanently on them and could be weened off just like before, just didn't want her having seizures that were not treated by some  a med!  He also ordered labs so he could check for things!

We are, as always, praying through this too!  She's fine, she's happy and mom is doing all that she can...couldn't do it without God and constant prayer!

We've got to make the most of this week away from school!

More to come...

Dreary day!

Its wet here today!! Its been raining since last night..appears its going to be raining for a while!  Its okay, we get to spend this day in the house cuddled up watching TV ( cartoons ).  Normally this would have been a school/therapy day, we actually had three appointments scheduled for today; a seating clinic ( making wheelchair adjustments ), Speech and OT....the rain and storms delayed all of those!

The little one is peacefully enjoying her relaxing day with mom...I'm enjoying the day in with her!

I am serious about being able to make the best of what we have and build on it!  I want to build on this blog and let it serve as an inspirational point for someone that has to go through trials, large and small, parenting is not easy and having to parent a child with special needs can be overwhelming.  I always tell myself to make time for ME, haven't done it much but that's a must!!

More to come...