Mallie's Story

I decided to start a blog to tell Mallie's story and keep everyone informed.  It is so hard to contact everyone - as we appreciate all the care and concern and prayers.  So it here it goes.

Mallie was born full term at 4 pounds 4 ounces on September 10th 2009.  From about 20 weeks on I was monitored because of her small size.  She slowly started to taper off in her growth towards the end.  Eventually she just quit growing.  We don't know at this point if it was a placenta issue or if there is something genetically wrong.  She has struggled gaining weight and wanting to eat since she was born as well.  Therefore her growth has been consistant but she is nowhere near catching up to that is considered the normal size of kids her age.  We followed up 3 weeks ago in GR to a developmental clinic - where she was evaluated and several tests were ordered.  She is behind especially on the gross motor skills.  Because her developmental delay and her size, the following tests have been done so far.  She had an Upper GI, MRI, Hearing screening and blood work.  The bloodwork came back fine:)  The upper GI was a surprise to us showing she has a malrotated small instestine.  Meaning that her instestines did not form or attach properly during development.  She will set to have surgery soon to correct that problem.  They are awaiting the MRI results to come back.  Yesterday we had the MRI and the Baer hearing testing done.  She needed to be sedated for that - which the oral sedation worked perfect for her and she did awesome with!  During the MRI they did see something abnormal so an IV had to be put in and die administered for better contrast pictures.  The poor girl they poked her so many times:(  After the MRI the hearing test was done and the result of that made my heart sink.  She has some fluid in her ears, but the audiologist was pretty sure she has some hearing loss - mostly in the left ear.  We just can not guage the amount with the fluids in the ear.  So now she needs to be referred to a ENT specialist to get the fluid out somehow and be retested for more accurate results.  As for the MRI - the results are in but there is noone to tell us the results.  Dr. Leikert here in ludington her regular pediatrition has them, but would prefer if the Neuro developmental Dr in GR explain the results to me.  I am going out of my mind right now waiting to hear from them.  They are not very good at being on top of things there!  The doctor was out today and the nurse can't tell me anything.  I told her that someone needs to call me even if its tonite!  WE need To know!!  Also we still have yet to meet with the genetic specialists  yet and see what they have to say.  That appt is set for July 13th - we are on a waiting list to get in sooner.  But with surgery on the horizon I just don't know when this is all going to take place.  So as of now we are waiting impatiently and trying to stay postive.  I will post more as soon as I know.

Steph