Post-Op Update!

Sorry for the delayed post but daily therapy really takes the wind out of us, especially combined with school and everything else that is going on adjusting back to life!

First of all, surgery went super well; it was a huge success! He did really well all during the operation and we didn’t wait any longer than the expected 3 hours of surgery. The beginning stages of recovery was difficult bc of the vomiting from anesthesia (expected) and the reaction he had to some medication, probably one of the epidural meds (unexpected) and a lot of pain (some of it expected, some not). We tried to manage as best we could and he started to get better after 3 day and started to cooperate for his 2nd therapy session that day. By discharge (day 5), he was able to put weight on his feet and even take some assisted steps but still needed the wheelchair.

We stayed an extra week for their rehabilitative physical therapy, then we returned the wheelchair and headed back home with our stroller instead.

He had one session of PT before our flight home and then started PT again immediately the day after we got back home but was very tired. Since then, we’ve been diligent about 5 days/wk PT, also having him practice extra walking wherever he goes and on the weekends. He started to go back to school last week as well and is doing really well. His sitting has amazingly (and unexpectedly) improved so much and he’s doing a lot of great things but is still not at pre-op level yet and is still improving his stability while walking and will have to learn how to jump and run again (later). But he’s amazing and improving every single day and we’re so proud of him!

Thank you all for the prayers and love and support as always!

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Neurosurgery

Tonight, at dinner, Kaleb asked if he could pray. He doesn’t pray that often but at his request, we let him take the lead and he starts out with a common list of things he loves or is thankful for, whatever may usually come to a 4yo’s mind…but what came out of his mouth shortly afterwards stunned us in some ways but also moved us beyond words.

“Pray for doctor fixing my knee…”

We both peeked and looked at each other briefly, tears welling up in our eyes. Up to this point, we weren’t entirely sure how much he understood of what we’ve all been talking about and whereas the neurosurgeon is not actually operating on his knee, somehow he knows he’s having a huge operation that will ultimately affect his legs…

And he knows we’re anxious about it. And honestly, he is a little too.

Kaleb is scheduled for a major neurosurgery operation (called SDR = Selective Dorsal Rhizotomy) on March 2. It was scheduled less than a month ago and it seemed to have all come upon us so quickly in that sense, but we’ve been seeing the neurosurgeon since he was 2.5yo in preparation for this surgery. It’s been a long time coming…and we leave in a week.

In the meantime, we’ve just been scrambling to make sure all the logistics are in place, making sure all the needed therapy appointments are made and deposits paid for, and getting as much pre-op therapy for him as we can, while also completing all of his kindergarten assessments with the school district.

Lots of emotions are flooding us during this time, but we just pray for a smooth operation and recovery. We know the recovery will be a lot of work, as he will need to relearn how to walk again, but we are dedicated to doing everything we can to make the whole procedure and his recovery as successful as we can.

Please keep us in your thoughts & prayers during this time. Much love and thanks to all our family, friends, and supporters always and forever ❤

MRI without Sedation

This kid. We’re SO proud of him! He just completed a brain MRI without any sedation/drugs! They only had to do 2 retakes during the 50min period bc he moved a bit but was super still otherwise! I was planked over him on my elbows, crouched inside with him, holding his hands and his beloved stuffed dinosaur to keep him calm. My arms fell asleep after 15min but this was so big for us that I did not dare to move!

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You’d think from this photo that it was all fun and games, but it was far from it! It was actually our 2nd try bc he sobbed the entire time the 1st time, and even this time, he cried & screamed at first, but we knew he could do it if he could just get over being in that room. It did take a while, as expected, and the tech kept warning us, “Just so you know, I’ve never seen a 4yo be able to do this without sedation” but patience was all we needed! They warned that the loudness would scare him more once the scan started but that didn’t bother him at all, it was just the sight of the machine. Daddy and B helped lighten things up, B was saying that he wished he could get the scan too and cheering him up from outside the room when K was crying. I even had my cousin (he’s a surgeon with rights at the hospital) come with us and he also helped lighten up the mood for K and helped reassure the techs to be patient with us.

Of course, after it was all done, he was all smiles, as you can see from the picture 🙂

Funny thing was, after we left the hospital, K asked for a milkshake. Bc he remembered that we promised him that at our first scan attempt, back in Sept! It was 10pm but we got milkshakes! And the dinosaur (he wanted to bring it last minute) had a sound component in it so I had to take it out and sew it up during the drive to the hospital so we can take it into the MRI room, and then sewed it back in on the way to get milkshakes. My cousin even got called in for surgery afterwards bc he was on call that day but we were so blessed that he didn’t get called in earlier but was able to stay with us the whole time. Daddy and I were both praying so hard the whole time, both shedding tears of joy and accomplishment during the scan–me doing so inside the machine, him outside the room while holding the baby. What a night, but everything worked exactly the way it should and turned out so well! This was HUGE, esp since the last attempt was such a major fail and we just didn’t want him going under general anesthesia so many times in just 4 yrs of life if we could help it (now 3x instead of 4). So thankful we had our entire family together with my cousin, all working together as a team to make this happen  It just reminded me even more so of love and family at the times when it matters the most–and how this is what this holiday season is truly about.

Best Christmas ever. God is so good!

Belated Update

I know it’s been so long since we’ve updated this blog. A lot of things have changed, including a new addition to the family! We’re now a family of 5!

But some things also have not changed and we’re very grateful for that! We’re still very active in the epilepsy community and Kaleb has remained seizure-free and also medication-free. We continue to support research for a cure for epilepsy and volunteer for efforts in supporting those with epilepsy as well.

Kaleb is still at his county preschool in a special ed inclusion program for kids with orthopedic needs. He will be having his IEP in a couple months and we’ll see what the next steps are. He’s doing really well and is learning to read too! He still receives PT, OT, speech, hippotherapy, aquatics and we also added gymnastics this year.

Life is busy but we’ll try to update this blog at least annually so that those who are going through the infantile spasms journey can see how Kaleb is doing in the years that follow the IS diagnosis.

In the meantime, wishing you and yours a very Merry Christmas, the happiest holidays, and a wonderful new year!

Two Years SF!

Today marks the 2nd year of seizure freedom for Kaleb! He is truly our little miracle in every way possible.

Since it’s been a while since our last update…

Kaleb is in an inclusion program at a public preschool for special needs children with orthopedic impairment. He goes daily for a few hours each day and he also receives group speech therapy at school as well. He really loves going to school and tells everyone proudly “I preschool!” wherever he goes.

He receives OT, PT, aquatics, speech services weekly. We’ve also started hippotherapy (hippo = horse in Greek) this year, also on a weekly basis, and it’s been great for working on his core strength and balance.

His most recent milestone is jumping with both feet off the ground! It’s a lot of fun and he loves doing it! He also is getting stronger with stairs and also able to step up and down a curb independently.

His visual memory is his greatest strength. He loves numbers, shapes, colors and sight words. He loves learning and is very determined at everything he does.

We also participated in the annual Epilepsy Stroll again last month, which was wonderful as usual! Even though it’s at the same venue, it is still so different every year and we make new memories and experience new things each time!

It has been such a blessing to come so far through these past few years and it’s been an amazing journey! We can’t imagine our lives any other way and we are so happy that Kaleb has been seizure-free for 2 years! So much thanks to our family and friends for their continuous support and love throughout the years! And everlasting praise to God for his blessings upon us!

Surgery Clinical Evaluation

Update: the neurosurgeon recommended Kaleb come back in one year for another evaluation. The surgery can only be performed once and his right side spasticity is not clear enough to either include or eliminate at this point (left side is definitely included). They answered a whole lot of questions thoroughly during our three hour appointment, it was tremendously helpful, and we’re glad the surgeon chose the path of utmost caution. Their expertise was quite obvious and the appointment went very well!

Thanks so much for your thoughts and prayers!

St. Louis

Hello from Missouri! We’re currently in St. Louis, awaiting our appointment tomorrow with a renowned neurosurgeon to evaluate Kaleb for a potential surgery that could help with his spasticity (cerebral palsy). Please keep us in your prayers and thoughts as we await the results of the clinical evaluation, and also for us as we decide if this is the correct route to take for Kaleb’s future. Thanks so much in advance for all your thoughts!

One Year Seizure-Free!

Kaleb has been seizure-free for exactly one year! We are so happy, grateful, and blessed to have achieved this milestone and we hope for many more years of seizure freedom for our little guy!

We also want to thank everyone so much for supporting us at the epilepsy stroll, whether it be monetary, in spirit/thoughts/prayers, or in person! It was a huge success, we had a great time with all of our teammates, and we continue to strive for advocacy and hope for a cure for those with epilepsy!

Other than his walking, which is improving everyday, Kaleb is also able to bend down from standing and pick something up, stand up from a child-sized chair without using his hands, and he’s starting to put together short sentences, like “Mommy milk please”, “More water”, and “Bye Bye “. He loves playing the recorder and harmonica and tinkering on the piano, can catch a ball and walk around with it, eats with a spoon and fork, and is learning how to walk up stairs with support and pincer grasping with his left hand. We’re very proud of how far he’s come and we celebrate every inchstone everyday!

Epilepsy Stroll

This year’s epilepsy stroll is happening on May 17 at Six Flags Discovery Kingdom in Vallejo! We’d love for everyone to join and walk with us, then spend a fun-filled day at Six Flags afterwards. Each walker needs to raise only $100, which includes admission to the park, breakfast, and lunch.

But most importantly, it goes towards a great cause for the Epilepsy Foundation. The foundation offers free training for schools and the public about seizures and first aid for seizures. They also provide a summer camp for kids with epilepsy every year.

Here’s our team page! Please join us for the walk and support the cause!
http://epilepsynorcal.kintera.org/faf/donorReg/donorPledge.asp?ievent=1104316&lis=0&kntae1104316=A276D16CE853431E9C2A38A93D39C7D2&supid=402378722

We have a walker!

Not this:
walker

But this!

The day we’ve been eagerly waiting for is finally here! We’ve been practicing and working hard towards this goal and Kaleb is starting to walk on his own, just in time for his 2nd birthday next month! We are ecstatic and looking forward to many more steps, inchstones, and milestones to come!