Saturday, June 14, 2014

And just like that...She's Three.

Our baby is three years old. Holy cow!! I can't believe it!! She's such a blessing. She's truly an amazing kid.... a handful but an amazing kid!

We kept it low key this year.... no party! Easier on me and she didn't seem to mind. We celebrated a few days early at a Tex Mex restaurant, with mom, dad, Aunt Missy plus our five. She got to wear the big sombrero and was sung to which she loved. We had a small cake and her favorite meal of 'Chickafila' (all one word) on her actual birthday.

For her birthday, we got the internet fixed to the DirecTv box so she could watch YouTube videos on the TV. It had been out since Spring Break when we rearranged furniture and accidentally knocked out the connection in our bedroom. Oops! She loves the Wiggles but really loves to watch them on the big TV and not just on my phone, so she was super psyched to get the Wiggles "for her birthday". What more could a three year old want for their birthday?! Haha!

She was in a cast over  nearly five weeks, including on her birthday. She's such a trooper! We started serial casting at the end of April to try to stretch out her ankle and get range of motion back. I'm happy to report that we had great success with it. She got about 50 degrees back and is into dorsaflexion again. She's walking flat footed again on her left foot. Yay! We have a follow up with her physiatrist in August and a new patient appt with an orthopedic surgeon to just have her evaluated and have one on stand by for the future as well. 

We saw Dr. G, her neurosurgeon, at the end of May. It's always so great to see him. Addie asked him his name and he told her and then asked her name and she said "My name is Addie Chapman" which was super cute. They sat and high fived and fist bumped and blew it up the whole time he and I talked. Her scans looked good - stable for her and we again have a one year follow up for May of 2015. WOO HOO! Thank you Lord! 

Addie is starting preschool in the fall. This is going to be a huge transition, mainly for me! HA! But we are excited about it and feel good about where she's enrolled. I think Addie is more than ready. We went and toured the school and Addie wanted to stay at school when it was time to leave. It was sweet. It's going to be scary to leave her for the first time, but I think it's going to be a great thing for her development. 

Summer break is upon us! Grayson is officially a middle schooler and Jack is out of kinder! We are so far enjoying a low key summer! We hope it stays that way! We have a trip planned later in the summer to go visit Adam's family and that's about it. School will be back in session before we know it, with FOUR of us in school it should be an adventure!!

Monday, March 3, 2014

Time MARCHes on...

Thanks to a little winter weather advisory, classes were cancelled tonight so I am gonna take advantage and update a little bit on what's been going on. Addie had her last eye surgery follow up in January. I had noticed that Addie's right eye had started crossing in again just the week prior. So now not only is she drifting up vertically but she's back to crossing in again. Dr. R point blank told me that she is the most complex case of estropia she has ever seen. Way to be an overachiever Addie!! ;) Dr. R feels like she's crossing in to accommodate for her somewhat farsightedness ... sound familiar? This was the diagnosis we had originally back in March of 2012. So Addie was written a new script for glasses and we are going to try that again. I feel a little bit like we are starting all over again. Like maybe by removing the muscle segment that we did to correct that last 20% deviation it re-weakened her eye all over again and now the 6th Nerve Palsy is pulling her eye in again. I voiced my mom theory to Dr. R and she said that it's possible but that generally that would mean it would be pulling in gradually and not intermittently crossing in. But with Addie, who rarely fits any textbook case, she wouldn't take anything off the table. 


Crossing in to focus on the camera. It doesn't happen all the time but when it does, it does !

We got her glass script filled and she's pretty darn cute in her glasses --maybe even cuter this time than the last -- and the amazing thing is she wears them. She asks for them. So maybe they are helping her see. But I can't tell that they are helping with the eye cross all that much. Yes, it's helping her not cross when she's trying to focus but it's not helping the cross all the time. So I feel like we may be looking at another round of Botox, basically starting all over on the 6th Nerve Palsy diagnosis (where the stronger muscle pulls the weaker muscle over). We are scheduled to see Dr. R again next week so it should be an interesting appointment. Addie asks to go see her all the time. It's really sweet. And very telling that she is the most frequent doc on our roster.




Speaking of other docs, she's scheduled to see her neurologist tomorrow for a six month follow up. That is if the weather behaves. Doctors' offices around here follow the local school schedules so if we have any school delays, the appointment will be rescheduled. Thankfully it is just a follow up and they can call in any refills if we do have to reschedule. If we do have to reschedule, this will make the third doctor's appointment we've had cancelled for ice days ... Crazy weather we've had this winter! 

Dr. N is also on the schedule for next week for her Botox follow up for her leg (rescheduled from early February). We didn't see any improvement at all with the Botox on her leg so her PT has suggested serial casting and is going to email Dr. N and see what she thinks of that option. I am excited about the option if it works. The idea is a new cast every week, like a semi-permanent AFO that she would wear around the house with a boot over it so she could walk in the cast. Hopefully, wearing it for a full week would stretch her leg/ankle out and then we would re-cast weekly at that new stretched position, and repeat weekly, getting a better stretch each week, hoping to get back range of motion in her ankle. Her tiptoe walking on her left foot has gotten a lot worse. She used to barely get up on tiptoes and now she's walking like she's in a stiletto and she's falling a lot more. Thankfully the AFO helps but the goal is to get range of motion back and to prevent contractures and her left leg getting shorter than the right. Botox in her leg may be something we try again but I am hoping we can try the casting as an option first. The cast is removable for bathing so that's a plus! 


Her AFO

In other news, Addie's pre-school eval is scheduled for March 25th which is crazy!! She just turned 33 months old!! WOW!!  The big 3 is right around the corner! I am excited about the pre-school eval and hope that we can get the services set up for next year that we are wanting. We plan to continue clinical PT through Dell. We really like the facility and all they can offer there and she really likes her PT. She asks to go see Erin all the time. As she gets older and can follow instruction better, I feel like she will be going more than just weekly. Pre-school, however, is really going to be an awesome thing for Addie. She asks to go to school all the time. I think the social aspect will be great for her and we are hoping she can receive other services through the school as well, like speech and OT. I will definitely update the blog when I know what her IEP goals are! 



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