Summer 2012

Hey All - I know I think I say this every time - it has been awhile. Life sure is busy. Let's see where to start...hmmmm? Since my last post we had a follow up with the CI surgeon and the Endocrinology Dr. Mallie was 17.4lbs and 29.5 inches long on June 13Th. All very good - the dr upped her dosage of GH (growth hormone) from .3 to .4. She was very happy with her growth and even commented on how much taller she looks! All was good there....second appt of the day was the ENT doc and he was pleased with Mallie's speech and her development in the hearing world. She had an ear infection a couple weeks before the appt so he decided to give her a good cleaning and see if there was still fluid in there. There of course was still fluid in there so another round of stronger antibiotics was given to us and we were to follow up in a few weeks. So we started a bigger dose of GH and an antibiotic on the same day. We had been noticing some behavior changes in Mallie and could not really tell if the antibiotic was giving her an upset tummy or she was just getting started in her terrible twos. She started getting whiny all the time and has even had a few MAJOR meltdowns. I mean major and over what? I have no idea - the first time she threw a tantrum I chalked it up to being really over tired. Well it happened again out of nowhere after she woke up one morning. I called and spoke with the Endo doc to see if the Hormones could possibly cause something to make her so irritable and we both agreed the antibiotic could be causing some discomfort and the change in mood. We voted to wait and see once she finished that up so we can rule it out. Well we finished the meds and low and behold she has still been super crabby and whiny with 2 more tantrums over nothing. I don't even recognize her when she acts that way - it is so weird and WAY out of character. I know that all kids throw tantrums and whine but it was just hard to believe that overnight she could be that way. I decided to contact some other RSS kiddos moms on my Facebook group and see if they had any insight. What I learned is a few had issues with behavior while on GH. Now Mallie has been on it since last October with no changes in behavior that drastic. My gut told me the increased dosage was causing her to act this way. I have now for a week straight given her the old dose amount and she has been alot better. Still some whining but mostly our happy little Mallie. Steve and I agreed to try it for two weeks so one more to go for an official verdict. I know I should call the doc too and let her know what I did - it may be the other dose is just too much for her. I think too there is no reason to up the dose if she is doing good on the other. From what I have read the dosages range from .3 to .6 - so an increase to .4 is quite a bit. I will call them next week and let them know after I have made sure this is the problem. Even beyond the behavior issues she is still excelling in both her physical strength and her vocabulary. She literally tries to repeat everything - which is awesome!! She now pushes up from her feet and lifts her tiny bum up in the air. Its her version of standing up! The fact that she wants to do it is great because we have struggled with her wanting to put weight on those little feet and legs. Its a huge step for her. Our PT also let us borrow the gait trainer for Mallie to walk around in over the summer in between visits. Had the follow up yesterday with the ENT doc and of course she still has fluid in her ears - which means gotta get tubes in those ears. The outpatient surgery is set for Aug 6th - and should be no big deal at all. Kind of expected with Mallie I guess - better to get it done now before cold and flu season tho. Well that is all for now - but my goal is to update once a week from here forward. I know that by slacking I miss out on lots of fun things to report too! Hope everyone is having a great summer!