Monday, August 27, 2012

I don't get to post on here often, mostly because our life can be a little chaotic at times.  Elly is growing in so many ways.  Still not walking yet, but we are hopefully. Last Friday she was measured for her second set of SMO Splints by SureStep.  It was kind of bittersweet, while I want Elly to have everything she needs to assist her in the beginning stages of walking I was also hoping that this would be the last device we needed for a while.  But it is my vow to everything that I can as a parent to help Elly grow and develop to best of her ability. 

The past month we have also had a few bowel problems, and Miralax was not working as it used to. After a brief evaluation at the Myelo Clinic a few weeks ago Elly was prescribed mini Enemeez.  We insert them anally once daily to soften her bowels.  It works pretty well, but I am concerned that she is going to become dependent on it, doing more harm than good.   I would really like to find an alternative natural remedy for her bowel problems, but have yet to find on.  I know that proper, well balanced diet is crucial to digestion, but there has to be something else I can do to help her move along.

After meeting with her Early On Physical Therapist today we were given an assignment.  Over the next few weeks we will be working on improving Elly's fine motor skills by incoorporating more structured play time using a Magna Doodle, puzzles, and shape sorters.  We will also encourage Eliana to gain more balance, by letting her hold onto a hulu hoop on one side while we hold the other.   We continue to encourage Elly to climb when at the park and put weight on her legs as much as possible. Honestly our house is beginning to look like an obstacle course, but it is all for the greater good.  In a couple of weeks we have an appointment to be evaluated by a Pediatric Physical Therapist and may have intensive therapy once a week if needed.

Overall I feel a lot more optimistic about the obstacles we face.  The only limitations to Elly's  success come from not doing anything at all.  

It is all For the Love of Elly, who stole my heart the day she was born.

Najeema Iman

Thursday, August 9, 2012

We have come a long way in a year, but we still have miles to go.  Our current struggle comes from Elly's in frequent bowel movements.  Truth is they have always been irregular, but lately it seems like the Miralax that she takes  on a daily basis isn't cutting it and she has horrible rash that just isn't going away. 

I bit the bullet and called the "Bowel and Bladder department" at our local Children's hospital along with our Myelo Clinic and Urology.  To be honest the last couple of days I have kind of been in a little bit of panic mode, okay well not panic mode, but I really want to find out what the problem is.  I fear the catheter.  I know that it is a medical device that helps SB kiddos, but I just don't want have to deal with it.  Sometimes I fear the unknown, and expressing this seems like I am the worst parent in the world, but I want like any other parent  to know that my kiddo is going to be okay.  She's not sleeping great at night and add teething into the mix and you have a whole list of other problems. 

Other than the bowel problem, her legs seem to be a little stiff and one foot still turns out when she tries to take steps, sometimes even when she has her splints on.  We are thinking that she may need more intensive therapy to help her gain better control over the use of her hips. 

Elly is definitely not the most challenging Spina Bifida case, but it is sometimes difficult for me to deal with it, when my oldest daughter didn't have the challenges that Elly faces. She reached her milestones well before she was suppose too.  I know that every child is different, and develops different but this is still hard  for me.  I know that everything is going to be okay, and that everything happens for a reason.  The only way to look towards tommorrow is to be hopeful.