Goose Egg

Well, last sunday we had our first little accident...little Mallie rolled off our bed and ended up with a little goose egg on our head.  I guess we are just so used to her not going any where - we take it for granted.  She never rolls on our bed, EVER!  Steve was watching TV with her when he turned away for a second - and she was gone.  So we took her to the ER just to be safe.  It took us longer to drive there than it did for the Dr to look her over.  She hit her head probably on our dresser but other than that she was fine.  She had just that little bump on her head.  The Dr assured us this kind of thing happens all the time.  Daddy felt horrible......I want to apologize for being mad at first too....I know you did not mean it.  Just glad she is ok and I know that there will more accidents in the future because that is just life :)  We just have not had the luxury of her being really mobile yet to have to be on our toes that much.  She is getting there though - she can almost sit on her own without support!!  Which means she is getting stronger and soon she will be even more mobile.  Time for us to start child proofing everything or at least real soon!  She getting so big even for her....she is still wearing 3 month clothes but she has the biggest personality ever!!  She loves to mimic and copy everything - we are so ready for her to have her ears as we call it.  I just think she will really take off with her communication.  Still looking like May is the latest and they are still waiting to hear back from CSHC regarding the one or two implant debate.  She told me this week that there are 6 of us that are waiting to hear.  It still makes no sense to me her logic but whatever!!!!  I am calling every week to get an update.  I know they will get sick of me but I don't care.  Wasting time is what we are doing now and that annoys me!!!  Lets go!!!!  Last week we saw the endocrinologist and it was a hi how are ya kind of appt.  She will be in charge if we decide to go the growth hormone route.  Hormones don't start until 2yrs or older, so we won't see her again for awhile.  Mallie was on the 7th percentile for weight to height ratio - which is very good!!!  She weighed 12lbs 4 ounces! under the 10th they don't like to see but we are just happy she is on the chart.  She will never be on the chart for her age - but because she is always going to be shorter and smaller I am going by the Weight to height ratio not the others :)  Since increasing her food intake rather than bottles all day - I think she is getting meatier:)  She is getting 2 meals aday now and 4 bottles.  My only concern is how to get liquids in her.  With doing more food she is getting less liquids therefore leading to constipation too.  Trying to balance this is all a puzzle.  Been trying to get her to drink water from a sippee or even juice watered down after a meal.  She is not too sure of this yet.  She associates the bottle with formula so if I put juice or something in there she won't even try it.  So we are working on that!  I also have decreased her prevacid from twice a day to once and so far I have not noticed that she is eating less so next month we may go to every other day and then just take her off.  I don't think she needs it anymore - but don't want to just take her off  - just in case.  Well thats all for now - hope everyone is trying to stay busy and warm during this dreary winter months :)

An Update

I found out from Priority Health Mallie has been approved for bi lateral implants.  Yay!!!!  But the Dr office is still convinced on their idea that because have a supplemental insurance of CSHC that need to verify they can still do 2.......Did I mention how they are getting on my nerves yet???  AS of the moment they have a block time held in May for her surgery.  We could go sooner but they are trying to figure out the new block times at the new Childrens hospital.  I will be following up next week and we will get this figured out.  I know that she will get two at once and that its going to happen very soon.  ITs really exciting but I am super nervous too.  It is a 5 hour surgery to do the two at once.....which is a LONG time...but it would be done...and we can move on with NO more surgeries.  So there is that, but I am also nervous because there is no guarantee....I want to be positive....I really do - but its in the back of my mind.  What if we do this and it don't help her at all?  There is no question that we need to go for it because we have nothing to lose.  Its just nerve racking...........  THIS could change her life is such an awesome way!!!!  I pray to god that it works and my baby will be able to understand language and be able to talk and communicate just like everyone else.  She deserves that!!!!! 

VENT!!!

So yesterday I called the Cochlear Implant Dr office to give them our new insurance information.  We switched to Priority Health at work.  So they need to run the pre authorization thru them for her implant surgery.  No big deal or so I thought.....The scheduler at the dr office told that our supplemental insurance CSHC - would  not cover bi lateral implants at all only one.  Meaning that if we were approved for two with priority that CSHC would not pick up anything to offset the cost.  If we did one however no big deal they pick up everything after Priority pays their portion.  I was like oh well we still want one surgery, two implants.  95% of all implant recipients end up getting a second one later down the road.....I just don't want to waste time, money or put Mallie thru more surgeries than we have to.  I think she has been thru enough already damn it!!!! Anyways I told her it did not matter I still wanted them to try for two with Priority.  BCBS and Priority are pretty much the only Co. that will approve 2 at one time.  So I think we have pretty good chances.  I called CSHC to verify that in fact they won't help offset deductable if we get 2.  They said that was correct.  I thought Oh well.......we will figure it out.  So then the dr office calls me back and the insurance claims gal wanted to talk to me.  She than tells me that the Dr. will only do one implant because CSHC will only allow one.  I said well we are running it thru our primary first which is Priortity.  she then tells me it don't matter - there is an agreement with the doctor and CSHC that they can only do one.  I was super upset with her.  I told her she was pissing me off because we are not gonna get just one if Priority oks 2.  Then I asked her how the hell CSHC can determine what we do when they are supplemental insurance for us.  KEY WORD, Supplemental.  Then she says well its only 2 surgeries.....Oh no she did not just say that to me.  I told her that Mallie has already been thru enough surguries, she has had 2 too many as it is.  where does she get off?  So I had a meltdown at work....I can't wait to personally thank her for that......So than she says I will talk to the doctor and see what he wants to do.  WE will go somewhere else if they are not willing to work with us.  Totally sucks that they are the only IMplant place in GR.  I know we can go elsewhere but its convenient and we are comfortable there.  I than called the  CSHC rep back and of course the woman I need to get my answers from is not available.  What I found interesting is that the dr office chic called her to ask her about the CSHC policy after she told me that they would only do one.  She did not know what the hell she was talking about or she don't know for sure.  I am so Mad that she tells me that crap and gets me upset and she don't even know for sure.  SERIOUSLY - don't feed me a line when you don't know for sure.  Because what she was saying makes no COMMON SENSE!!!  So no we wait to here back from someone who knows for sure.  UGH!!!!!!

ON the upside - Mallie is getting smarter and smarter.  She tries to mimick us all the time but yesterday I had a baby einstein video in for her about sign language and she was really trying to copy several of them.  She amazes me all the time.  Just another reason having those implants is gonna give her a chance to really excel and learn and grow.  Well I am signing off for now.....post more later :)

A New Year - Time for some changes and for the better!

Happy New Year to all!!  I have once again not posted in awhile and one of my resolutions is to not do that...I need to post more!!  I should not just post the bad and scary stuff but all the fun and amazing things she does too.  So here will be a recap of the latest and I am really shooting to at least post weekly this year!!  Hope everyone had an amazing New Years Eve - I can't believe its 2011 already.  The night for us was low key at home with friends.  Mallie is battling a cold so she snotty and coughing up a storm.....which in turn equals sleepness nights for everyone in our house!!  But all in all I am glad to see 2010 leave us.  I am very optimistic at what this year will bring.  So much to look forward to for everyone that I know.  I have learned alot about myself this past year.  I never knew how strong I really was or how determined and dedicated I am to making the best life for Mallie.  Every inch of myself was tested in more ways than one and I have learned how great all of my friends and family are.  Really - all of you are amazing and without the love and support of each and every one of you - I know that I would have not survived.  So for that, THANKS FOR EVERYTHING!!! I LOVE ALL OF YOU!!!!  Steve, to you as well - I know this year tested us beyond what we ever imagined.  I know things were rough there for awhile - I just want to tell you that I love you and here is to a better year for our little family:) 

So on to Mallie  - she is such a trooper!!  She is still amazing in every way and keeps plugging along.  With everything she has to deal with she is still such a happy little miss personality.  She loves people and interacting.  LOVES Macie too!  As most of you know she has Russell Silver Syndrome which is its own obstacle.  She will always be little and I think we have excepted that.  She is so stinkin cute!!!  So we are still on high cal formula and feedin her every 3 hours like a newborn.  Food in between and she feeds herself crackers and cookies.  I keep tossing the thought in my head about incorporating more food ...like a real toddler does.  Also a new FB friend with a daughter in the UK has this syndrome.  She is 2 and only weighs like 13.5 pounds.  I have been picking her brain and asking away.  She was told that no matter what they feed their little girl she is only going to gain what she will gain.  So she is basically on a reg 2 year old diet.  She eats small amounts more often......I feel by keeping Mallie strictly bottle fed at this point we are sill keeping her and treating her like an infant.  One of the things we are told is because our kids are so small and seem like 3-4 month old by size.  WE are supposed to treat them their age as much as possible.  So after chatting with others who have kids with this RSS, I am thinking to slowly start adding meals.  Today for lunch Mallie ate a whole yogurt plus some mashed taters and then had a few sips of formula.  The yogurt is 100 cal.  so if I make lunchtime a meal for a few weeks and she still keeps on gaining her little amounts, I will be happy with that and its one step closer to being more normal for her at her age :)  Wish us luck with this......

We are also moving forward with the cochlear implants....last week after our second appt we had her MRI/CT scan done and will hopefully have results this next week.  They were looking at anatomy and making sure she is still ok for the surgery she will be having.  I pray to GOD that there are no surprises or speed bumps in that dept.  No surgery is scheduled yet and as of right now we have switched insurance at work - so we have to go thru another PRE AUTH for the bi lateral implantation.  Again hoping it all goes as planned and before spring Mallie will be closer to hearing.  We were told by the dr doing the surgery that there is a chance of the implants not being benificial because Mallie has other developmental problems.  I understand what he is getting at, but she so wants to be social and interact that I just know she can do well if given the chance and the surgery going good. 

As for miss Mallie she has been getting stronger everday and sitting up in her seat.  She now has a jumper she is starting to like.  Which will only make her legs stronger.....I am excited to see what happens in the next few months.  We will be seeing a GI doctor sometime this year to address her digestive issues and hopefully figure out if she still needs prevacid or not.  Plus we meet with her Endocrinologist to discuss her sugar and growth.  The implants, reg weight checks, physical therapy.....lots of things coming ahead and all of it is going to make Mallie that much stronger and better:)  We also have started seeing a chiropractor, hoping this will help her get stronger and with her digestive issues.  So far she has gone a few times but will be going once a week starting this week.  Very optimistic with everything coming our way in the near future.  Well I have rambled on and on for awhile now....so I am gonna stop now:)  Look forward to my weekly posts  - We wish everyone a very happy, healthy New Year!!!

Steph, Steve, Mallie and Macie