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
I like your new approach of treating her more like her age rather than her size. I think she will respond well to that.
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