My Special Life: August 2018

Photo booth at Audrey and James Wedding

Lucas will be starting second grade in two days and I marvel at how my little baby has turned into a second grader already. I've been looking back on all the Instagram pictures and videos (link) I posted since he was only a few months old and a sense of pride comes over me as I see how far he has come and is now a healthy seven year old boy.

He still smiles and giggles just as he had when he was one year old - that hasn't changed and when he is serious, he has the same gravity of expression as if the whole world rests upon his shoulders which I saw even as a one year old. It felt awkward that I would play peekaboo or silly games with him when he felt very much like an adult in a tiny little body and I worried that our lives would be somewhat boring - but boy is it not boring!! Never a dull moment in our household - not necessarily because of childish antics but because of Dup15q. Luki's personality is just so mild, calm, serene, mature, deep, serious yet giggly,too. It's easy to overlook his signature personality, the uniqueness of his soul and presence when faced with a serious intellectual disability and it can be easy to dismiss his unique quirks as just a part of his disability, but I try to recognize what part of Luki is Luki and not Dup15q or the side effects of medications. My cousin's son just got married last weekend and I remember having babysat all his siblings and his cousins, I recognize a little piece reflected back from within themselves which hasn't changed a bit since they were tiny infants. Is it the soul that stays for a lifetime and stays constant even as the physical body transforms so many times through the various stages of development? Some things never change.

My little Liam is a bundle of joy and lightness compared to Lucas. That's just who he is. He giggles at the drop of a hat and plays peekaboo with me and even ventures to lift people's shirts to look for their belly buttons and once discovered proceed to show off his own belly.

Liam attended a music class this summer where he learned the difference between a glockenspiel, xylophone and a metallophone (not really, he is still clueless, but I sure learned alot!). Lucas sat on his Convaid stroller munching on his cereal while watching Liam and I sing and dance in circles . One third of the cereal ended up on the floor as he still hasn't mastered the pincer grasp and since he still can't drink from an open cup and put the cup down after taking a sip, there was some spilt milk on the carpet floor. So grateful Lucas never had meltdowns (thank goodness!) during class and he actually seemed to be enjoying just watching the little babies and their parents having a good time. And many parents gave sympathetic glances over to Lucas and me and I felt grateful we were being accepted during the class.

Music class: playing the african drum

Dancing to La Bamba as Luki watches from the back

playing the metallophone

Lucas has breakfast while Liam attends music class. Here's Liam snatching a few of Luki's cereal.

Liam is shy with strangers.

Today's music class is with pots and pans!

Lucas has had quite a seizure adventure this summer. At the end of the school year, his seizures were getting worse by the day and the school nurse gave me a thick packet of seizure logs which I shared with the neurologist. Things were looking so bad that we were even considering a VNS implant. We tried two different medications -felbamate and lamictal and stopped keppra altogether which I should have done a long time ago as it was really having no effect in stopping his seizures. Felbamate seemed to make his seizures worse so after titrating it up for a week, we brought it back down in another. We then started lamictal which seemed to be working well but then we noticed rashes all over his torso, arms, feet and hands. I thought it was a side effect of the lamictal leading to Steven Johnson Syndrome but he actually developed hand mouth foot disease! No surprise there as he always takes his socks off at Party Kingdom and the PlayPlace at McDonald's - his two summer hangouts. He spiked a fever of 103 for a day then it took about 2 weeks for the rashes to heal. Gabriel caught this from Luki but was mistakenly told by his primary physician that he may have gout. Only when he shared pictures of Luki's rashes with his brother who happens to be a physician were we aware of hand-foot-mouth disease. It's misdiagnosis like this that makes me suspicious and distrustful of medical doctors. Gabriel was so close to starting gout medications! Ugh, stuff like this really makes me mad. Who knows what treatments for Luki's seizures are also totally off the ball and inapropriate?! We stopped lamictal althogether but Lo and behold, his seizures have completely stopped!! He is currently only on banzel but I have no idea what stopped his seizures. Was it the fever, can infections such as hand-mouth-foot disease stop seizures? Was it the felbamate or lamictal or the synergy of both? Was it the longer sleep in the mornings during summer vacation( he would sleep until 9-10 am). There was a period when Luki went for almost three months seizure free when I started high dose of DHA (see previous blog on subject blog) but then the seizures returned. Will the seizure return again within a few months time? I wish I knew what the triggers for onset are and why they mysteriously just disappear. At times, it feels as if his brain needs to get the seizures out like having a big bowel movement and once all those haywire electrical discharges are out, it gets satisfied for a while, but only for a while. He is not had one meltdown since his seizures have completely stopped. I am not starting lamictal back up until he starts showing signs of seizures again. I am thankful but perplexed.

It was a hot summer and Mondays were designated as mommy-and-me days with Lucas at Newport Beach while Liam attended daycare learning how to finger paint and use a fork to jab food. Liam makes so much progress at daycare that my mother in law thinks I should send him more often. His speech is still very delayed (he is still nonverbal) so the pediatrician and the occupational therapist at Kaiser recommended us to the Regional Center for Infant Stimulation and Speech Therapy sessions at home. This all feels like dejavu and I immediately felt overwhelmed at the thought of having to juggle therapy sessions for both Lucas and Liam! We may even have two therapists in our home at the same time working on each child. I am praying for strength and stamina to do all of this.

This summer, I cancelled way too many ABA sessions so that we can go play in the kiddie pool in the backyard, go to the Playplace at McDonald's, swing at the park and jump on tampolines at Play Kingdom -- a giant indoor playground for kids going crazy on sugar and adrenaline. Luki climbed up a giant ladder and came down a slide all by himself.

Mondays are Mommy and Luki day at Newport Beach

He also contracted foot mouth and hand disease there because he kept taking his socks off. I've learned to use sports tape to keep his socks on from now on

Play Kingdom. Luki climbed up all by himself!

Hand-Mouth-Foot disease rash

Sports tape!!

By the end of the summer, he seems not to have much interest in going to these places anymore. Maybe he is over it already, We never quite made it on a Disney cruise, but we went on a weekend getaway to Santa Barbara at my alma mater and stayed in one of the dorms converted to a "Summer's Inn" and had a great time hiking along the lagoon, exploring the campus and hanging out at Goleta beach and eating yummy foods. These are the many small moments among many that made up our summer of 2018 and they will stay with me forever. I guess these little moments are what makes up life.