A Mallie update

I know, I know I have been absent with updates.  I apologize.  We have been busy busy :)  Its been a month since I posted!!!  So this will be a long one.....and here it goes.  We had our follow up with Dr. Robertson and he thought Mallie looked great and told us as much as he loves seeing us - we should not ever have to see him again - we still have our fingers crossed:)  The next week on Oct 29th we had a speech and language appt and a follow up with the developmental pedes doctor.  Laura was the speech specialist and after an hour appt - she conconcluded that Mallie is obviously behind on her gross motor skills.  Alot is due to her size still and that will come in time.  Her speech is also behind mostly we hope because she can not hear.  But her social and communication skills are right on track!!  Laura thought that Mallie could for sure benefit from the cochlear implants.  Although each kid is different on how they react and benefit - it is definetaly something to pursue to give her every possible opportunity.  It was good to hear some of that:)  Later that day we had to go to Burdo Hartman's office for her neurodevelopmental follow up.  I was so excited to see and talk to Nurse Judy........NOT.  She is dumb as ever and I wanted to scratch my eyes out when talking to her.  She had all the details screwed up on Mallies hospital stay.  When I asked her to get Mallie's weight from the date we were discharged - she came back with the third to last days weight.  I could go on and on but whatever we got thru it.  Mallie weighed 10 pounds 13 ounces that day!  When the doctor came in we just went over all of the history again and what she was doing and eating.  Nothing really became of anything.  She was going to refer us to a speech person in Manistee to help with eating, etc... and wanted us to try this  Vital Jr. Drink instead of Pediasure.  The vital stuff is equivelent to pediasure but its more like her alimentum formula and broken down.  So we took the samples home....and of course Mallie was able to detect a different taste and was not a huge fan.  She did eat it after a few bottles.  After I checked into it - we had to order it because it was only offered thru a medical supply store.  It was $150+ a case.......WOW!  A case has 24 8 ounce bottles in it.  And right now because we are still mixing her formula with it until we can get her take it straight.  A case will last a while - but when she gets completely on it - yeah a case would last a week!!!  So I called the nutritionist and she thought we might be able to get it covered.  MIGHT?  So basically if I got her to like it and eat it, maybe it would be covered and then what.  WE can not afford that?  So I did some more research and found that Nestle makes a drink called Nutren jr.  Less sugar, less money and the same stuff.  It is only $50 a case.....plus Nestle willl send you 2 cases a month:)  So we switched over....another benefit is that walgreens carries it and can order it for us.  So far she is doing good with it, we are almost to half formula and half Nutren jr.  The Russell silver sites I belong to say that the doctor in New York who specializes in RSS kids prefers the Nestle because of the less sugar.  With these kids being prone to fasting hypoglycemia its a better option and better for her teeth.  So that is where we are at with her eating.  She is still doing good with eating but not as hungry as she was when we first came home from the hospital.  WE just need to get over to the Nutren full strength and with the food in between she should be getting lots of calories.  Now on the 10th of Nov we met with the audiologist to follow up with her hearing aides and then met with the surgeon who will be doing the implants.  The audiologist appt showed the same results basically - no real benefits from the hearing aides.  The surgeon, Dr Daniels, was kind of a downer that day.  He came in and really focused on kids that have syndromes or dev delays tend to not do as well with the implants as the kids who are so called normal.  I know that its going to take a lot of work and alot of time to get Mallie up to speed with the implants.  I am well aware of it and we are ready to do whatever it takes to help her!!!  So bring it on!!  I told him we wanted 2 implants not one and he agreed that its more of a benefit to have 2.  He then spoke about the Insurance pre approval and sometimes they will only pay for one based on the childs history.  Which I think is crap because she has a some delays she don't deserve to hear out of two ears?  WTH?  that is ridiculous - so if insurance does throw a wrench you can be we will appeal and fight that.  At the end of the appt he asked us if she had anything going on up there?  Meaning her brain?  Again inappropriate and rude!!!!  Not a big fan of his beside manner but he is one of the best in the state.  I think he only looked at her clinical picture and not her physically.  She is very smart and has a lot going on we just need to get her the proper tools to help her succeed and communicate with us.  So now we have to wait for pre approval of the insurance company and she has to have another MRI and CT scan of just her ears.  That is scheduled for Dec 20th in GR.  As long as insurance and the images are fine the surgery will be in Jan or Feb.  For two implants surgery is about 5 hours and she will have to spend the night probably.  Then this past week we met with a speech therapist in Manistee who is helping us with eating.  She was awesome and showed us a few things to do to improve Mallie's eating of solid foods.  Also since Nov 12th Mallie can sit in her bumbo seat and hold her head up!!!  Yay Mallie!!!  She is doing so much better with her strength and supporting herself.  I think the more weight and the bigger she gets the better all that physical stuff will fall into place!!  She has about 12 or 13 teeth and they keep on coming.  She is also so vocal lately....just vowel sounds but she is making lots of noise, especially when excited.  Hopefully we can keep her making noise - its hard when she really don't know she is doing it.  Only a couple more months and we can get her hearing and that will be awesome!!  I don't want to think its going to fix everything but I am so excited at the thought she will be able to hear and talk just like everyone else.  I have to have some faith that its going to work....right?  So this is where we are at for now and the next appt in GR beside her MRI/CT is the endocrinologist.  I hope to keep this up a little better with sharing in Mallie's new things and accomplishments!!!  Love to all - and have a Happy Thanksgiving next week!!!