Six months ago today, Savanna underwent a complete TPO resection led by her neurosurgeon and epileptologist, Dr. Tandon and Dr. Von Allmen respectively.
The process started very early in the morning. About 3 pm we spoke to the epileptologist. Tears were shed. Hugs all around. Then we did it again at around 5pm with the neurosurgeon.
Each day, I thank the Lord for giving us a fresh new day, and pray it will be filled with happiness. (I don’t think he hears me everyday?) Each day I also ask for forgiveness for my sins of yesterday and His help to be the best husband, father, and friend today.
What has changed since the last post at 4 months?
Savanna and Austin turned 2 years old on September 20th. The picture to the left is very different than a year ago! A couple of days prior, we participated in a Memorial Hermann Hospital marketing campaign highlighting the benefits of MEG technology. Our local ABC13 filmed the event and interviewed us and our doctor. The 90 second news clip is here. Rebecca’s full 12 minute interview resides on their website.
Foremost on my mind today, is that I don’t believe she is having seizures or even epileptiform activity, but I cannot say this for certain. She has reached 6 months without a clinical seizure that I have witnessed. Most doctors and surgeons would harbor a guarded optimism about her future, but at the same time would suggest this is a big milestone given the circumstances.
She has almost completed cutting her two-year molars. While difficult, it has been sweet to see her struggle through this period with relative normalcy. She simply could not experience this in the past.
She walks around the house at will. 2 months ago, she could only take a few steps, seen here.
She has learned to stand up on her own, without help from furniture.
She can safely navigate steps. We do not knowingly let her do this alone.
She can focus on an activity for more than 3 minutes regularly. This has been a huge step forward with regard to self-regulating her behavior.
She can point with her index fingers and can operate simple cause-effect toys.
She has started to deliberately put toys into a container, in a very controlled environment.
She can roll over somersault style, a bit sideways, but she can do it.
She understands when you are not looking at her. For example, when you holding her while talking on the phone, she will deliberately put her hands on your face and try to turn your head to look at her. Or, she will ‘look around the corner’, to see your face. When she does this to me, it feels great as Savanna is still decidedly a Mommy’s girl – if Mommy is in the house. This indicates increased awareness and it is exciting!
All of these milestones are wonderful to watch. This 6 month milestone is a breath of fresh air. It is reinforcement for me that the surgery, the hard work every day with her sensory diet, and the physical and developmental therapy, is working together to allow her to thrive. When I reflect on the what she has learned and how quickly, I believe the therapy has helped immensely.
It is not all cake and ice cream though.
While she is eating well, she is very finicky about what she eats. And, she still won’t reliably drink thin fluids. She will not suck at all. This is very frustrating. Yes, you can sit and spend 1/2 hour forcing her to drink 3-4 ounces of fluid if she is really thirsty. But she will aspirate – a lot. Right now she is very healthy and seems to clear her lungs well. I am not without pause here, as throwing caution to the wind is dangerous. All it would take is a moderate cold combined with aspiration of fluid filled with bacteria (such as milk or formula) and you could have a serious problem. I will be trying another feeding clinic in the coming months.
Now that she is walking, the visual field cut is becoming more clear. She has really hit things hard where it was obvious she was walking and just didn’t see the table or corner of the wall just off to her right side I know these incidents will dissipate as she learns to compensate. But, it hits really home realizing her visual field cut is large enough to most likely prevent her from obtaining an operators permit for a vehicle. I know some of you might think it is odd that I would think about that or mention it now. But she is doing so well now, that it doesn’t seem out of reach – much like it would seem for a normal 2-year-old.
I have noticed Savanna ‘pausing’ at times, and so have the therapists. I say ‘pausing’ not staring because while she is paused, she is not focusing on what she is staring at. You can put your hand right in front of her eyes with no response. These events don’t seem to affect her motor function and are short. She does always seem to respond to the sense of touch. Is it partial seizures I am witnessing? Probably not, but I am not sure. I am sure we will catch some of these events on an upcoming 23hr VEEG.
She has stopped saying the consonant sounds she was saying at 4 months. She was saying about 5 sounds with and without prompting. Now, she has other noises that include sounds like what you might hear ‘Curious George’ make, and a growling sound. Is it a regression? Is she intently focused on her new-found independence being able to walk, that this has been sidelined for now? Or is it…. something else?
She flaps her hand a lot when she is excited. It looks suspicious. Is she really saying ‘Hi?’ Or is it…. something else?
She has a fascination with putting her finger into holes. It dominates every therapy session and at times takes away from the session. Sometimes, without a fidget toy that has holes in it, I can’t even get through a therapy session. She finds dimples on plastic toys that looks like holes. She is fixated on finding assembly screw relief holes on toys, cloth loops, etc. She can be obsessed with inserting her fingers into such holes. I have to say the last week this activity has lessened. It was cute at first. It enabled her to regulate her behavior somewhat at first too, so I encouraged it. Is it just a developmental stage? Or is it… something else?
I recently took them to the pediatrician for the 2 year wellness checkup and flu shots. I completed the M-CHAT (Modified Checklist looking for Autism in Toddlers) and she scored really high for ASD. Because I have done my homework, I knew this was coming. Yes, she is delayed, but the loaded questions regarding ASD are not about development, they are about ASD. Her exome sequencing indicated a significant chance for ASD. And, ASD manifests in significant percentage of children diagnosed with Infantile Spasms. An evaluation is forthcoming in her near future.
If you were to see her today for just a short while after not seeing her for some time, these things I mention would not be part of the memory. I believe the questions about ASD are challenging to definitively diagnose or dismiss at this stage. That said, I cannot ignore what is happening or hope it just ‘goes away’ as that would be foolish on my part. I cannot ignore the science that I have subscribed to thus far. I believe early diagnosis and treatment is the best course of action.
She surprises me with her development at times.
She inspires me as a leader daily.
Her encouragement, although ambiguous at times, motivates me to lead her to success versus micromanage her challenges.
A short note about the rest of the kids.
Tristan started Kindergarten this year. He loves it! He has always loved to learn and thrives in the structured environment. He is playing soccer at the Y this fall and is doing quite well. He recently ran in a Boosterthon FunRun race and ran about 2 miles. Mommy and Brandon cheered him on.
Brandon is something else. On the cusp of turning 4 on October 7th, he continues to say really off the wall funny things. He has always done this, but it continues to get more entertaining. Right now, he is participating in PRE-K4 soccer at the Y – (a very questionable use of funds 🙂 ) His first game, he just walked right beside the coach and held his hand. His most recent game, he at least ran and was able to kick the ball. He is very shy as it turns out, and I guess in Tristan’s shadow I didn’t realize it. He is protective of Savanna while being playful in way that she just loves. Hearing that deep belly laugh from Savanna when Brandon is playing with her is wonderful.
Austin is doing great. He is so intent focused on keeping up with Brandon during the day, and the ‘big kids’ at other times. He has a lot of new words now and is growing up fast. It feels like his first year was just a blur. I am glad we have some video to reference!
Ruth, our Au Pair from Australia, is working out really good. It has enabled me address a hernia repair that was long overdue. Our daily routine is working out well enough for me to start working out again and it feels great. Rebecca and I have enjoyed a couple of date nights – we almost forgot what that was like. Ruth has really been good for our entire family.
YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Nuff said.
Rob and Sheila Dance http://www.robandsheiladance.com 609-519-0793 or email email@example.com Proud members of the World Swing Dance Council
Hey there! It has been a long time. I hope you all are well. Thanks for keeping up. One day, we will make it back out to a dance weekend…
It sounds like she is doing so well! I can tell you are concerned about ASD. Believe me, it sounds like a big scary thing at first, but it is nothing compared to what your family has already been through. It’s just a word that give you a toolbox to better understand and help your child. She looks so beautiful in the pictures! 🙂
Of all people who read the blog, I knew you would understand the ASD concerns the most. Genetic testing indicates a ‘damaging to probably damaging’ finding on one gene related to ASD. Coupled with statistics of historical developmental paths of kids diagnosed similar to Savanna with regard to the IS, a new chapter has begun. However, this is just the next step. I knew you of all readers would understand.
I wish you the best with hunting down Mary’s dx. We too, are still waiting for additional genetic testing as well. Another overnight EEG next week. Then more waiting for results. The waiting is difficult.
The waiting is hard. But it sounds like she is doing so well. If you ever need to chat about the autism, I’ll be here. Good luck with the EEG. I’ll be thinking of you guys. Hugs.
Things sound encouraging! Still love the writing, and the news. Somehow brings us all closer. Savanna is special, as is her family.
I am glad you find the writing about the news appealing. I have tried to make the posts more enjoyable to read. Sharing God’s love is what it is all about.
Wow, another wonderful post, Ken. Thanks for the continued updates – we will make sure to continue sending prayers your way. One question: how have you not lost any hair through all this??? You guys look awesome!!!
I am glad you enjoyed the post. A lot of work goes into each one. The prayers are being answered!
I think I have lost some hair. Mostly, the brown has been replaced with grey!
Thanks for the kind words,
See you soon!
I eventually managed to read your blog today and I apologize for not having had this chance earlier. You have been following our research blog “Beyond the Ion Channel” for quite some time and I just wanted to use this opportunity for a reciprocal visit.
First of all, I wanted say that it’s really wonderful that you manage to put your experience and feelings into words and I wish Savanna, you and your family all the best.
We are always looking for suggestions for new posts on our blog. As you know, we have a strong focus on genetics, so please let us know if you have any comments or ideas. For example, you mentioned in your last post that Savanna’s exome predicted a risk of autism. I have been trying to write about the possibilities and limitations of exomes to predict disease and this might be the basis for a future post?
I am honored you have chosen to read our blog. It means a lot when someone from the professional community takes interest.
Genetic predictors for ASD are tricky. The explosion of diagnosed children in the US is unbelievable. Here in the US, there is common belief that immunotherapy, instituted decades before Autism was a household word, is to blame. There are few things I find more frustrating than ‘the media’ spinning non-scientific or deliberately (or ignorantly) biased studies to claim ‘vaccines are bad!’.
I am not sure how this kind of genetic study would work. Probably like other recent large-scale projects, retrospectively? I have read a few that dismiss Dr. Wakefield’s published work in 1986, but he remains dedicated, committed, and vocal blaming the immunizations for Autism. He relentlessly un-educates the public about the benefits of large scale immunotherapy against common diseases that once killed by the thousands here in the US. These diseases are now making a comeback, after near extinction, from years of spin from celebrities and big names based on what Wakefield (and others) published. Someone like yourself may be able to put all the evidence together and write article speaking to the science – from a genetic perspective.
Another topic could be the statistic link between the IS and Autism? Is it indeed related to the damage from the seizures (environmental)? If so, perhaps nothing to study there from your perspective. Or are there reliable genetic predictors that could allow treatment to start sooner; before parents like me are simply at the end of their emotional rope chasing help.
Always interested in your posts, even if I have to do some research just to understand them! Thank you for your time in putting them together.
So glad to read about this milestone! Oh, looking for the markers of autism…I know how you feel. Between the spasms and Connor’s own genetic predisposition. Though the word no longer strikes the fear in me that it did when he was born.
Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam
Your story is compelling and noble. I will work it into a post about hope after Epilepsy Awareness Month, sometime in December.
What a wonderful update, Ken. Six months seizure free, walking, and LEARNING. Sounds a lot like where we are, and it’s a much better place to be, despite the other challenges. Thanks for the update and she is as beautiful as ever!!
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