Tuesday, April 4, 2017

An Epilepsy Update

Obviously I've been woefully negligent of this poor little blog. Life has found a balance of normal for us around the hydrocephalus, as many hydro moms told me it would when we were diagnosed. Days go by where we don't think about Addie's shunt or use the word hydrocephalus in conversations. We are thankful that we have the luxury of time behind us and hindsight and adjustment to what has truly become our new norm.

Addie is in school (private kinder) and loves it. We decided at the beginning of this school year to repeat her in Kinder for a myriad of reasons but the main one being she is a young 5 yo with a May birthday and considering the rough start to life she had over the first few months after she was born, she's really more like a September baby so holding her back made sense on a lot of levels. We are realistic that more time will not mean her delays will magically erase themselves but we do believe that giving her a rock solid kinder readiness skill set will only benefit her in the academic hurdles that await her as she grows up.

The most frequent flyer doctor we've seen over the last two years has been her neurologist. We actually changed neurologists in August of last year and love our new doc. Which is a good thing because I have a feeling we will be spending a lot of time with him. Addie's seizures have been quite stubborn over the last year and half. She had been having headaches -- about two a month -- that we finally connected to being post ictal migraines after a prolonged over night seizure we were missing. Addie's seizures are quiet and she doesn't move a lot with them so they are incredibly hard to detect on seizure monitors. We increased her existing med (a process that took quite a while because she was still on the same dose that she had been on for two years) that she had been taking since she was first diagnosed and had 6 weeks of seizure control. No migraines, no seizures. We were thrilled. Until November 1, 2015 when she fell off her bar stool, hit her head, and immediately began vomiting. We took her to the ER for a CT and in the process she was up past her bedtime by a number of hours. This, we would later realize, was a big rock in her seizure pond and caused ripples that took a while to calm back down in her brain. Addie's seizures are incredibly related to sleep. 99% of them occur while either falling asleep or waking up. When we had the ER visit, we inadvertently triggered a round of seizures that neuro added another med to her regime to counteract. Hindsight being what it is, that was probably the wrong decision. He assumed (and I feared)  her epilepsy suddenly got worse when we really should have looked at the fall and sleep deprivation as an event to let her recover from before adding more meds.

Fast forward to now after a year of tracking seizures: seeing increased seizure activity, seeing changed seizure activity, and seeing six week 'honeymoon' phases before her seizures would return. We are now looking at beginning testing to see what else we can do for her seizures. On one hand --  we realize how blessed we are that Addie is averaging  just 2 seizures a month when I know so many children who battle hundreds a day. But we are also to the point that we know we have to look at Addie's quality of life and trying to get her seizures under control more than they are would 100% be better for her. Plus if there's a chance she's on the wrong type of meds for her seizures or if the meds themselves are causing some of the issues (which is what we suspect with the second med she's on), we would be remiss not to investigate it, no matter how scary.

So after today's neuro appt., her new neurologist (have I mentioned how much we love him?!) wants a five day in patient EEG where she will wear a back pack that transmits the EEG data and she can be up and moving around and playing and then sleeping (the biggie) in the hospital. The hope is to capture some great data to see what is really going on in her brain when she has a seizure. He suspects (as do I) that the type of seizures she's having are not what the medicine she is on is designed to treat. This would also be the first step toward testing for epilepsy surgery should be elect to go down that path in the future.

I felt it was time to resurrect her blog for now as we may have some big updates to share with family in the following weeks and months and did not want them to come out of no where!

She's our miracle girl and the light of our lives and we are so honored to be her family. Hoping and praying this is the right next step for her journey.

Friday, June 19, 2015

Another year goes by

Obviously I have been woefully neglecting Addie's blog. This is mostly a good news thing. We have been crazy busy and she's been doing well!

Addie did not qualify for sped services last year when we had her evaluated at 3. Which was a good problem to have, we were so thankful that she was doing well. But it was also a challenge to find a preschool that was excited to have her be a part of their community. Most schools saw her as a list of medical issues and didn't see a child that needed a helping hand in her development, which is really what education should be for every child. We finally found a wonderful school that welcomed her with open arms. We will forever be grateful to the school that did see her as a child ready to learn and not just a scary list of medical terms. However, after  getting to see her in a school environment for six months, I started seeing the things she was struggling with at her preschool (a lot of visual things, attention span, and fine motor). I requested another eval when she turned four, and was able to give them a list of things that we were seeing in a school environment to check into. I am thrilled to say she qualified and will be receiving services at the same school our boys go to. I realize this may sound really odd... being happy my child qualified for special education services, but when you have a kiddo like Addie, all you want is what is best for THEM. And that definitely involves celebrating all the things they CAN do. But... you also have to advocate for them and help people understand the things they struggle with. Addie is a complex case, and I am a firm believer in the more help she can get, the better. We are super excited that she will be getting OT, PT and vision services in the fall. We found out the good news the day before she turned 4 so it was a great birthday present for her and for me!
She requested a domino cake! lol She loves playing with dominoes.

She saw Dr. George in early May for her one year follow up, and I had to snap our traditional picture with him. I think she likes him as much as her mom does!

In other news, we finally reached the point of surgery with her left leg. Her contracture had gotten so bad that she was walking on her toes so high that her ankle was collapsing and twisting with every step. The theory is that because of her left hemi, she's weak in her left core and left quadricep. That causes her to hyperextend her knee. Which she compensates for by popping up her left food up on her toes. The more she toe walked, the shorter her calf muscles got because she wasn't extending them  to keep them stretched as her bones grew. She had a gastroc soleus recession on May 12th to release the contracture and let her tendons relax again. She has been rocking a purple cast since.

Thankfully, the cast comes off next Thursday and we will be walking straight down the hall to have her new AFO put on.  I am cautiously excited to see how she walks after the surgery. She actually RAN the other day, cast and all. I've never seen her run before. It was pretty awesome.

As far as the rest of us... we are all doing well. Grayson rocked 6th grade this year -- all As and made honor band for next year. Jackson loves school and received the citizenship award for his class for the year. He is quite the rule follower.

Adam is working as hard as ever. We were able to take a little getaway just the two of us last week thanks to my mom and sister. It's never easy to leave Addie but we know that making time for ourselves is super critical with everything we have going on.

I am in my next to last semester of grad school! with plans to student teach in next spring. Ideally, I will be able to start teaching full time the same semester that Addie starts KINDERGARTEN!!! Whoa... Hopefully I can update this blog again before her first day of kinder haha. 

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! 


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!

Sunday, August 4, 2013

The Arrival of August

And just that like summer is winding down. We have three full weeks of summer vacation left and then we will hit the ground running. It's going to be a whole new experience for our family this upcoming school year as both boys are going to be enrolled at the same school!! I sat down today and typed out our ideal routine for school days. I shall post it on our fridge and enjoy trying to stick with it for ohhhh about two weeks! Anything else beyond that will be a miracle.

Our summer has been a great one! We have managed to take the kids swimming several times, gone on vacation to Atlanta to visit family and friends and see a Braves game, made a day trip to get some yummy BBQ, and made several trips to the local outlet malls in search of school clothes times two this year!  Adam and I even snuck away for an overnight date night a few weeks ago, thanks to Aunt Missy, who watched the kids. 

Addie's first time swimming this summer! She loved it! June 7, 2013

Our family of five at Turner Field in Atlanta, GA June 29, 2013

All 8 of us!! Chapman Family outside of Marietta Diner June 30, 2013

Addie ready for the Outlet Malls on the Fourth of July!

We had to take a trip to UT campus to get a copy of my transcript for my graduate school application. Had to take some pictures while we were there!! Hook em!
 July 12, 2013

Getting our BBQ on at Louie Miller's BBQ in Taylor. It was gooood!! July 23, 2013 

Medically speaking,  Addison is doing awesome!! She saw Dr. George, her neurosurgeon, on June 7th after having her fast aquisition MRI on the 6th. She got a great report. Scans are normal for her and we don't have to go back to see him for a FULL YEAR!!!! Amazing!! We are so excited and thankful! A tad surreal to go that long without seeing him but we are thrilled that Addie's able to go so long without an MRI. Of course, like always with hydrocephalus, things can change on a dime and we will continue to watch for any signs or symptoms of shunt failure. 

In other medical news, we have recently started clinical PT again, this time at Dell Children's Rehab Clinic and we LOVE it. Well, I love it! Addie isn't a fan of the work. Her physiatrist wanted her to work up to a Walk Aide device ( more info here ) to help strengthen her left leg when she walks to improve her gait. Her new PT has tried it on her five minutes here or there and Addie isn't a fan. But the fact that Dell just has one sitting around on a shelf to try is pretty impressive! I miss all our ECI therapists but really feel like this is going to be a great thing for Addie's physical development. We drive down one morning a week and it's an easy drive, free parking, etc. Awesome! It will be even easier once the boys are both in school. Thankfully Aunt Missy and Mom have been around on and off to watch the boys so they haven't had to come hang out for the hour too many times.

Addie saw her eye doc this past week and Dr. R wants to try Botox again. She feels we saw a marked permanent improvement with the first treatment and that it warrants trying again before we move on to surgery. So we have that set up for September.

Addie waiting to go back to see Dr. R. July 31, 2013

Speaking of September, she has her next follow up with her neurologist in September and then of course we will be following up with ophthalmology to watch her eyes after the second round of Botox. She'll have a 30 month well check sometime in November and a follow up with her physiatrist in October. That should round out all the medical appointments for the year. It will be weird not seeing her neurosurgeon in November... but pretty awesome too!!

In non medical upcoming events -- we have a Disney trip planned in November which we are really looking forward to!! A family reunion the week before we leave for Disney, and a trip to Albuquerque in December. Busy busy!! And then as soon as the New Year rolls around I will be going back to school!! It was a big decision for our family but I am ready and I think it's going to be a good thing for all of us. I will be (hopefully) taking two night classes a week, working toward my Elementary Education Masters and Initial Certification. I have already applied and been accepted. I'm just a little excited!! The goal is to be able to student teach the Spring of Addie's kindergarten year. Which is insane to think about. I have the luxury of time since I'm not wanting to go back to work before she's in school full time. So this program will work out and this way I only have to take two classes a semester.

Our back to school list is almost done. We are working on moving the boys rooms around so that's what out next three weeks will be filled with. Paint, school supplies and catching up on Project Life to get ready for all the back to school pics. Then it'll be time for kindergarten orientation and meet the teacher for Grayson. Already. Where does the time go??

August 27th here we come!!

Monday, June 3, 2013

Jacob's graduation

The last weekend in May, we headed to Llano so we could attend Jacob's high school graduation! Jacob is my oldest nephew, my sister Maurie's oldest son. I had asked Adam to take off work for the occasion so I could attend without having to bring Addie with me. Plus the fact that graduation didn't start til 8pm  -- it would've been way past her bedtime! Thankfully he was able to request off! 

He's going to Texas A&M and joining the corp of cadets. I won't hold it against him.... but Hook em!! ;)

Melissa had a lot of fun decorating his party table. We had a small party before graduation because Project Graduation was immediately after. So dinner at 5pm - no problem! Can you guess what his school colors are? 

Aunt Missy and the high school grad after the ceremony
Raychel and one of her bffs, Kacy.

Jacob with his mom!

Jacob with my parents.

The face Jacob makes when getting advice from his grandmother. LOL

My sister Maurie and her family at the graduation reception

Raychel playing photographer