Thursday, January 2, 2014

Wrapping up 2013

Oh my. I can't even begin to make excuses for this poor little blog of mine. Needless to say, blogging wasn't on the top of my to do list enough throughout 2013. And sadly, I don't know that 2014 is going to be much different. The good news part of this means there hasn't been a lot of medical news to report for Addison and that is just awesome. 

She had another round of Botox on her right eye to further release the contraction from her Sixth Nerve Palsy on September 5th. Her eye didn't react nearly as severely this round so we didn't get the crazy floating up into her head or way over to the left which was good. Her ophthalmologist said she only has a 20% deviation in her horizontal alignment after the two rounds of Botox which is pretty amazing. We went ahead and scheduled strabismus surgery for December 5th and managed to coordinate with her physical rehab doctor to do a round of Botox in her left leg (for her spasticity from hemiparesis) at the same time to take advantage of her being under general anesthesia. It worked great! Her eye surgery was a little more involved than just Botox injections. Dr. R moved her eye horizontally by 6 mm to correct the horizontal alignment hopefully once and for all. She debated up until the last minute if she was going to try to adjust her vertical alignment or continue to watch it. She had questioned if there was really an issue like Fourth Nerve Palsy or if she was just continuing to overreact to Botox -- the theory being she was just really sensitive and the Botox traveled down to a muscle it shouldn't have and weakened it, allowing an upward drift. Up until the very last minute before surgery she was waffling back and forth whether or not to try to correct her vertically or not but decided not to. Her logic, and I agreed, was that it's better to slowly correct each muscle a little bit at a time than to over correct her needlessly. 

She was in the OR for about an hour, then recovery for another hour, and we still were able to get her home only an hour past nap time.  She slept for about four hours that afternoon which is about double her normal nap time but she woke up in a great mood and seemed to handle any discomfort fine. She's such a trooper!! 


Discharged and ready to go home



Her leg is still really tight and so far we've seen no improvement from the Botox in her leg. Dr. N does a low dose to start with and it seems to not have affected her tightness at all so we will most likely be doing a second round of Botox for her left leg as soon as we can--you have to space Botox out at least every 3 months. 

At her follow up with Dr. R for her eye surgery, as soon as we got back in the next day, Dr. R saw vertical drift.  So we are chemical patching again and may be looking at a second eye surgery this year. It's back to a wait and see approach. The great news is that her horizontal alignment looks awesome. And there are some kids that have intermittent vertical deviation that never require surgery and that may just be the case with Addison. She's come a long way with her eye alignment and I am definitely glad we are correcting her slowly and cautiously than risk over correcting a problem we aren't even sure is there. 


Two days post op



One week post op

Addie's still receiving her PT at Dell Children's. She's been bumped down to once a month for now. She's in this gray area between being young enough for her physical therapist to manipulate her leg for her but not quite old enough to follow directions to "walk on a treadmill with a weight on her ankle for five minutes" and understand why she's having to do it, so that's going to be quite a change for us. Her neurology follow up in September went great, Dr. K is "thrilled" and doesn't want us back for another follow up til March! We just had another AFO fitting and she seems to like her new brace. She is constantly trying to put it on herself and on everyone else in the household for that matter. 


The boys are both loving school! Jack is rocking Kindergarten and Grayson is definitely enjoying being the big man on campus as a fifth grader. We made it back to Disney in November and it was a wonderful trip!! 









We had wonderful Thanksgiving and Christmas breaks as a family, spending time in the Hill Country with my extended family. 






2013 really was a great year for us. We saw many changes for our family and most of them were for the better. 2014 is going to bring with it it's own set of changes. Adam was promoted at work to a new position that is going to be quite different from what he has been doing for the last four years but he's excited for the challenge and I am very proud of him!

In other news, I am starting graduate school in just a few weeks. I am super excited to be going back to school! I'm not in a hurry to finish. I don't really want to go back to work until Addison is in kindergarten but as our sweet girl is already two and a half, that time will be here before we know it, so I am starting the process now. Grad school with three kids is going to be fun! But I think I am ready for it. 

So as far as this little blog goes, I'm afraid it's becoming a " no news is good news"  blog. It has served me well. A place to pour it all out and share our journey with hydrocephalus. And I promise I won't leave y'all hanging. But our day to day family documentation is going in our Project Life albums and our medical news, thank God, is just not as frequent as it used to be. She's an amazing little kid but right now the stories are more about how she spilled the whole pot of potato soup out of the refrigerator or how she got on the floor and tried to eat her breakfast taco off her plate like the dogs. Or how she took more Christmas ornaments off the tree than on. Or how she loves to boss her brothers around. Or how I'm so busy keeping her from hurting our dogs or her brothers, I don't have time to write this blog ;) ! 


Thank you all for reading about our little girl! And for sticking with me through my fits and spurts of publishing. I'll be back. I'll definitely let you know how Addison is doing as she grows. And hopefully, with God's help, as she continues to thrive. 

Until then, as always, feel free to email me with any questions you have about hydrocephalus or what it really means to be a mom to these little miracles we call our children. And I'm always up for a new hydro mom friend on Facebook. :)


Love and Blessings and Best Wishes for an Amazing 2014!
~Aimee