We had a REALLY great meeting with O's doctor at Children’s mercy back on October 30th, and in consideration of his recommendation, we decided at that time that we should pursue a 3rd opinion regarding the hemispherectomy procedure…or a tie-breaker, as Dr. A called it. He really is such a great guy, and we remembered at our meeting how much—and why--we have always been so fond of him. It turns out that a lot of the negativity we were getting from his end from the time we returned from Cleveland and leading up to the October 30th visit was because the keto nurse who had been communicating his messages to us has very very poor social skills (and apparently, a complete lack of compassion). Seriously, I'm convinced she must be a robot.
Dr. A made some incredibly good points about why surgery might not be the best option for Otis. He went over O's MRI results and recent EEGs with us very carefully, explaining on the EEGs exactly what his brain was doing and what the MRI images meant. He said that a place like Cleveland Clinic might tend to be a bit biased towards surgery, since that's what they do, and they do it WELL--meaning that they tend to want to try to tackle things surgically when others might be a bit more conservative. But fair enough—since that’s what we were asking for. We talked to Dr. A about possibly going to Johns Hopkins in Baltimore for our 3rd opinion. Dr. A agreed said that Hopkins has a great neurosurgery program AND a great pediatric epilepsy and ketogenic diet program, so it's likely that that sort of bias toward surgery would be less likely. We realized that we maybe should have gone to Hopkins all along (instead of Cleveland), but we didn't, so here we are.
We asked Dr. A what his next plan of action for Otis would be, if not hemispherectomy, and he told us that if we were to decide to not move forward with the hemi surgery, he would like to talk to us about getting Otis set up with a vagus nerve stimulator, which is sort of like a pacemaker for the brain. It’s got its own set of pros and cons to research and consider, but unlike the hemi, it would be reversible if it didn’t end up working out well for Otis. It would also be an outpatient procedure—procedure in the morning, monitoring throughout the day, and if all is well, home by evening.
We went home from that visit with a lot to think about and some big decisions ahead of us, but felt like we were leaving with very good information from a very caring and supportive doctor.
We started to lose momentum a bit in early November. Ryan and Otis were both sick, and then I went through a period of feeling overwhelmed and exhausted and just generally down (much better now!), and THEN came the musical at Ryan's school, which he assistant directed and which consumed his life for a couple of weeks…but once we made it through November, we began to get back on track.
We finally scheduled an appointment for Otis to see a doctor at the Johns Hopkins Epilepsy Center—the head of the Ketogenic diet program—at the end of January. Otis had another MRI at Children’s Mercy on December 10, and results were pretty much the same as the one done in Cleveland in September, no better, no worse.
We have some upcoming appointments in early and mid-January with Dr. A and a neurosurgeon at Children’s Mercy to talk VNS stuff, and then will decide whether or not to pursue that, rather than continue down the major surgery road right now. We have halted the keto diet wean and are holding Otis at 2.5:1 until we can get a better handle on the surgery situation.
Otis is still having about 200-300 seizures per day, but since weaning off of Keppra a couple of weeks ago, he has been super alert and engaged. We had no idea he’d been in such a fog until he was completely off of the drug, which unfortunately never did anything to help control his seizures. He continues on the diet, Clonazepam, and Pyridoxine (B6).
Other stuff….
Otis has gotten SO big since our trip to Cleveland in September! He’s been hovering around 27 pounds for a while, and is now over 34 inches long. At 18 months old, he is looking more like a little boy and less like a baby every day. I keep trying not to blink!
Otis may not be able to do many of the things that other kids his age can do, but he reminds us constantly that his epilepsy and the developmental delays it has caused do not define him. We delight in seeing new rays of his unique personality shine through each and every day as he gifts us with sly smiles; shrieks and squeals as he continues to discover his own voice; cleverly feigns sleepiness when it’s time for his Tiny-K therapy sessions (or any work, really); and throws little whiny temper tantrums as he communicates to us his displeasure at having his teeth brushed or the rats’ nests in his hair detangled or yet another syringe full of medicine squirted into his mouth.
As the year has progressed, we have become really good at shifting our focus away from the things that Otis is not yet able to do, and instead celebrate all of the things that he can do, and all of the progress and big gains he continues to make despite obstacles and impediments. We are absolutely in awe of and completely enamored by our mighty little guy!
Here is just a small sample of the things that Otis CAN do now:
Help hold his spoon and guide it to his mouth at meal times.
Help hold and drink from a cup—both a sippy cup and a small plastic lidless cup.
Communicate with us when he wants something by raising his eyebrows, shouting out, and/or bringing his hand to his mouth at our suggestions of things like “bottle,” “plug,” “milk” (cream), and “water.”
Hold onto light toys like hoops and rattles and soft blocks with his left hand.
Grab onto and play with spinning and noisemaking toys placed on his high chair tray.
Interact with fun developmental apps on his iPad.
Sit up with assistance, and then again without much assistance at all when in the bath tub.
Push up on his left hand and right elbow when on his tummy while kicking his legs behind him in a crawling motion.
Roll over both ways when placed on his back…and can somehow magically make his way all the way across the living room floor in no time.
Put weight on his feet when held up in standing position with his feet on the floor. He LOVES doing this!
Watch us and follow us very intently when we’re moving around him, doing stuff around the house.
When he’s sitting in his high chair, if he’s not focusing on playing with a toy, it’s pretty much a guarantee that he’s watching every move we make.
Recognize and respond to his mommy and daddy’s voices.
Help turn the pages of his books (he really likes to close their covers) and grab and tear the paper off of presents.
Put his plug (pacifier) in his mouth all by himself…and then take it out again…on endless repeat.
Chew soft chunks of food, like cheese, avocado, pieces of his egg and macadamia nut keto pancakes, and cooked carrots and squash.
Charm everyone he meets with his bright eyes, chunky cheeks, perpetual bedhead, sweet voice, and general adorableness.
Here’s a photo recap of the past 2 months:
October...
December...
Otis is currently getting over a pretty yucky respiratory virus (RSV) that really reared its head over the weekend, sending us to the Children's Mercy South ER in the wee Sunday morning hours to make sure he didn't have pneumonia (he didn't). He's sounding pretty yucky, still running a fever off and on and is still not feeling 100%, but seems to be on the mend. Hopefully the antibiotic, snot suctioning, and breathing treatments we're giving him every 4 hours will help move the healing along. In the meantime, we'll be making frequent trips to his pediatrician so she can keep an eye on him. He looks forward to kicking this crud so he can finally celebrate Christmas with both sets of grandparents!
The three of us send big hugs and much much love to all of our amazing friends and family. We are so grateful to you all for helping us through this challenging year in so many ways. We are so very blessed.
Happy happy New Year to you all! Stay well!!!
Otis has gotten SO big since our trip to Cleveland in September! He’s been hovering around 27 pounds for a while, and is now over 34 inches long. At 18 months old, he is looking more like a little boy and less like a baby every day. I keep trying not to blink!
Otis may not be able to do many of the things that other kids his age can do, but he reminds us constantly that his epilepsy and the developmental delays it has caused do not define him. We delight in seeing new rays of his unique personality shine through each and every day as he gifts us with sly smiles; shrieks and squeals as he continues to discover his own voice; cleverly feigns sleepiness when it’s time for his Tiny-K therapy sessions (or any work, really); and throws little whiny temper tantrums as he communicates to us his displeasure at having his teeth brushed or the rats’ nests in his hair detangled or yet another syringe full of medicine squirted into his mouth.
As the year has progressed, we have become really good at shifting our focus away from the things that Otis is not yet able to do, and instead celebrate all of the things that he can do, and all of the progress and big gains he continues to make despite obstacles and impediments. We are absolutely in awe of and completely enamored by our mighty little guy!
Here is just a small sample of the things that Otis CAN do now:
Help hold his spoon and guide it to his mouth at meal times.
Help hold and drink from a cup—both a sippy cup and a small plastic lidless cup.
Communicate with us when he wants something by raising his eyebrows, shouting out, and/or bringing his hand to his mouth at our suggestions of things like “bottle,” “plug,” “milk” (cream), and “water.”
Hold onto light toys like hoops and rattles and soft blocks with his left hand.
Grab onto and play with spinning and noisemaking toys placed on his high chair tray.
Interact with fun developmental apps on his iPad.
Sit up with assistance, and then again without much assistance at all when in the bath tub.
Push up on his left hand and right elbow when on his tummy while kicking his legs behind him in a crawling motion.
Roll over both ways when placed on his back…and can somehow magically make his way all the way across the living room floor in no time.
Put weight on his feet when held up in standing position with his feet on the floor. He LOVES doing this!
Watch us and follow us very intently when we’re moving around him, doing stuff around the house.
When he’s sitting in his high chair, if he’s not focusing on playing with a toy, it’s pretty much a guarantee that he’s watching every move we make.
Recognize and respond to his mommy and daddy’s voices.
Help turn the pages of his books (he really likes to close their covers) and grab and tear the paper off of presents.
Put his plug (pacifier) in his mouth all by himself…and then take it out again…on endless repeat.
Chew soft chunks of food, like cheese, avocado, pieces of his egg and macadamia nut keto pancakes, and cooked carrots and squash.
Charm everyone he meets with his bright eyes, chunky cheeks, perpetual bedhead, sweet voice, and general adorableness.
Here’s a photo recap of the past 2 months:
October...
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| Otis shows us just how much he LOVES a good haircut (and someday he might actually get one!)
November...
|
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| Working out with Daddy. |
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| Smiles for Grandma Reed! |
 |
| TWO spinny toys??? |
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| Playing with his spinny toy |
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| Working out on the yoga ball. |
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| This has absolutely nothing to do with Otis, but it's been hanging around our back yard for quite some time now. Adorable, no? |
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| Real smile...or toot smile? You decide. |
December...
(Someday I'll learn how to create a slideshow)
 |
| Here, kitty kitty.... |
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| Hanging out with Papa DuBois |
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| Cousin Taisley! |
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| Christmas Eve |
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| Christmas breakfast: sweet potato & rutabaga latkes with Greek yogurt and applesauce |
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| Presents! |
 |
| Present overload |
The three of us send big hugs and much much love to all of our amazing friends and family. We are so grateful to you all for helping us through this challenging year in so many ways. We are so very blessed.
Happy happy New Year to you all! Stay well!!!
1 comment:
I laughed out loud at the recurring opossum. Can't wait to see Otis (and his parents) again!
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