Happiest of birthdays to our big little man!! We can’t believe he’s already 3 and starting school soon—waaaahhhh!!! At 3 Brandon qualifies for public special education pre-school and he’s slated to begin in about a month. We’re happy but also super anxious. Happy that he’ll be in a new structured environment that will hopefully help him make more gains than just being in 1:1 therapy sessions. So very anxious because he’s never actually been anywhere without parental supervision. He’s very rarely in anyone else’s care so you can see we have major trust issues sending him off to strangers a few hours a day let alone to my parents for an hour. It’s not like he can come home and communicate to us that someone did this or that to him or explain a situation that made him unhappy. Of all the kids we understandably worry about him the most.
Over the last year Brandon has made small advances that are HUGE in our eyes. His mental and physical level is still very much an infant of 6-8 months. He’s starting to army crawl a lot better, become very voiceful when he is unhappy, can’t yet sit up on his own and actually a lot better with eye contact. We think he’s starting to recognize us as well as Nolan and Harlow as familiar voices and faces in his life. For the longest time he would be very bothered by Harlow’s presence/noises, but he has started to tolerate her so much better in the last month. I would like to think he actually has an affinity for her now–kind of like a love/hate relationship typical of any siblings. Brandon is strictly on pureed foods still and cannot feed himself or hold his own bottle. At least his gagging and vomiting has reduced greatly compared to the previous year and can now chew on the soft puff snacks so much better. We’re very hopeful that he will make a ton of progress this coming year and are very excited to see him build relationships with his teachers and classmates.
Thanks for keeping up with Brandon and for reading this far already! We hope you enjoy a photo recap of his 2nd year of life below.
Trip to Legoland.
Annual Easter photo with the scary bunny.
Seven Magic Mountains outside of Las Vegas.
Tulip fields in Oregon.
4th of July 2017
Annual cousins bonfire day in Huntington Beach.
Quick trip to Yosemite and Sonora.
Pumpkin patch fun in Irvine.
Halloween at Rancho Las Lomas. This was the highlight of Brandon’s year getting to be the King of the Iron Throne.
Annual holiday trip to Disneyland.
Holiday festivities with the family.
Celebrating the new year.
Visit to the Griffith Observatory. Nolan pushing Brandon around to look at the exhibits.
Valentine’s Day fun that resulted in a pretty great image of the 3 siblings.
Celebrating the Lunar new year the day before his 3rd birthday.
I can’t believe my sweet Brandon is turning 2. His condition has kept him so purely innocent making every laugh, every smile, every little bit of progress he makes that much more joyous to see. Sure, his condition is in plain sight a handicap but it has taught us so many priceless life lessons that no money can buy, no textbook or professor can teach. We are better people because him and we want to thank God and Brandon for that. We truly can’t wait to see what this next year has in store for him. Happiest of birthdays my darling!!
(if you’d like to read more detail on his condition and our thoughts on it you can catch it at the bottom of the blog post after the images)
Recap of the last year with Brandon. Video is strictly from cellphone footage.
LACMA Rain Room for Daddy’s birthday.
Photos with his cousins and grandpa.
Visiting with the Easter bunny.
Trying some ice cream at the beach.
Announcement that he’ll be a big brother to a little sister.
Trip to Japan. If he wasn’t in the stroller, he’d be forward facing in the carrier. Rob was a champ carrying him like that because he is not a light kid to be putting that kind of stress on your back but it had to be done.
Visited a cat cafe. We would be out all day so having the tablet with Little Baby Bum videos to entertain him was a lifesaver. Probably the most challenging thing was the food situation (Brandon still only eats pureed foods). We only packed enough baby food for half the trip. There was plenty of luggage allowance to pack for the entire trip but were there enough adult hands to push a stroller and roll an extra suitcase of food around for 2 weeks? NO. So we were constantly in search of Japanese baby food.
At the infamous Fushimi-Inari Shrine in Kyoto. A ton of steps means its not very stroller friendly so we only got to see a small portion of it.
Napping in a beautiful part of Kyoto and at the awesome Osaka Aquarium with the whale shark.
Annual holiday family photo session.
Annual visit to Tanaka Farms Pumpkin Patch. Always a ton of fun!
Wore his brother’s hand-me-down chicken costume from 2 years prior.
Holidays at Disneyland is a must.
Keeping with tradition we visited Santa at the Crystal Court.
Christmas Eve with mommy’s family featured again with grandparents and cousins.
Became a big brother to Harlow.
Valentine’s Day shenanigans.
Turning 2!!! And sitting better on my own.
Shortly after Brandon’s 1st birthday we found out from the neurologist that he has hypotonic cerebral palsy which explains exactly why at a year old he had yet to babble, sit, crawl or walk. Basically, Brandon seems to constantly be in a relaxed state because his cerebellum was damaged before birth. They describe it as a “rag doll” look so you’ll see that he has trouble sitting up straight and lack hand and leg coordination. Cognitively he is also behind and estimated to be at about a 6-7 month old and still eats pureed foods since his tongue and mouth control has yet to develop that far. His eye sight was also affected so at just 14 months old he already started wearing glasses.
For me, the gravity of the effect his condition would have on the rest of our lives did not totally hit until 6 months after his diagnosis. For the first 6 months I just thought he’d always eventually “catch-up” to all the other kids his age, but in reality he will progress at a snail’s pace and one day stop progressing altogether. Where will he stop? We won’t know until we get there because every case is unique, every child different in how this mystery illness affects them. Because his progress is so slow every little bit of progress he makes puts us in awe and has us jumping for joy. Now with a year of physical and occupational therapy gone by he has yet to get himself into a sitting position but when put there, can sit on his own for a few minutes; still doesn’t babble or crawl or walk. The professionals can’t give us an estimated age of when he ever will do these things because again, each case is so different. Brandon’s still light enough for me to carry but there will come a day when he will be too heavy for me so it will be his dad who carries him everywhere–his own personal Hodor if you will (Game of Thrones reference).
I’m not going to lie, every child I see his age (or younger even) I yearn for him to be doing the exact same thing: walk unsteadily up/down the aisles at the store, sit in a shopping cart, sip from a straw, say “mama” a million times to get my attention, crawl around the house getting into mischief, self feed a snack, wave hi/bye, hold his own bottle, sit unassisted on the carousel ride, flip pages of a book, use a spoon, blow out his birthday candle, share bath time with a sibling. Yes, we currently give 3 separate baths right now!! It’s kind of funny thinking back to when he was born 2 years ago I remember saying to myself in reassurance that “it’s only 2 baths for probably 6 months, then they can start bathing together.” Two years later I am thinking the same thing that in 6 months maybe he can start bathing with his brother, heck maybe we’ll go from 3 baths down to 1!! So like any mother, I have hopes and dreams for my child, but mine for Brandon are the most basic things that many of us take for granted on a daily basis.
I bet people wonder this all the time and can’t get themselves to ask us but knowing his condition, why did we choose to have a 3rd kid and why so soon? Remember that I got pregnant shortly after we got his diagnosis so the gravity of it didn’t quite hit me yet plus we’ve always wanted 3 or 4 kids AND I’m not getting any younger so we had to have kids now or never. Even with knowing Brandon’s diagnosis as we know it today, we’d still would have wanted a 3rd child. We accepted his condition pretty quickly, didn’t let the weight of it linger or drown us into depression and self pity, but instead took action to get him the help he needed right away. It does hold us back at times but we find ways to keep on doing what we would despite his condition (like travel to Japan with 2 kids and while I was pregnant). God also blessed us with Nolan who in our eyes stands to lose out on the most because our priority and focus is constantly on Brandon. He has been nothing but patient, sweet and loving with his baby brother. Gets him to laugh like no one else can, retrieves his pacifier when he’s crying; reads him books at bedtime, relinquishes tablet screen time for him. I don’t think any typical 3 year old would be able to stand thru the jealousy that would easily manifest from a situation like this–let alone now having to share time with 2 other siblings. Nolan has nothing but love for both his siblings–truly been a Godsend!
Our ultimate goal is that Brandon can be as independent as possible when he comes of age. Even if he can’t walk at least be able to feed himself, communicate to a certain degree and be able to perform tasks that can enable him to hold a job someday. For now, we will keep at his 4 therapy sessions per week to give him the best chances of progressing as far as possible. If anyone has any experience, thoughts or advice to share we’d love to hear it! Thanks for listening!
Nolan is growing up so fast but I guess he has to since he’ll be a big brother in just 2 short months. He’s learned so much in the last 6 months that I can’t even imagine what he’ll learn in the next 6 to come. I’m kind of sad that once baby #2 is here, I won’t be able to give him as much attention as I have in the last 18 months. At least he even got that much attention since any other siblings will not get the same amount of attention that he’s received. It will be divided between him and his siblings but I’m sure our love for our children will always be equal. Nolan’s pediatrician kind of scared me today saying having a 2nd child isn’t twice as much work but more like 3x! I guess we’re in for a big life changer real soon; too late, no looking back now.
Specs from today’s 18 month wellness visit:
Weight: 23 lbs 9 oz (46 percentile) Height: 33.5 inches (84 percentile) Head circumference: 19 inches (73 percentile)
Other notable things at this 18 month milestone:
*16 teeth (doubled in 6 months)
*fav foods: veggies of all kinds and fresh cut fruit
*loves: fish, puzzles, mega blocks, books, Elmo, music, bubbles
*fav words: no, moon, daddy, more, fish, Elmo, cici (for pacifier), bubble, ball, bird, wow, bye, cloud, cheese
*allergic to eggs and dogs (specifically their saliva)
I made a quick treat of a string of Snap Chats I saved in the last 6 months of Nolan doing “Noly” things. Be careful with the volume since one video could be louder than the next.
And lastly is a quick recap in photos of some of the things he’s done in the last 6 months.
8/29 – Beach Day
9/7 – Palm Springs & Salvation Mountain for mommy’s birthday
9/13 – Camping (in 100+ degree heat)
Attended 3 weddings (7/4 + 10/4 + 10/11). I photographed the 2 weddings featured below.
10/17 – Tanaka Farms Pumpkin Patch
10/31 – Halloween at Rancho Las Lomas
11/30 – Disneyland. It may have rained that day but he loved every ride he went on: Nemo, Rockets, Buzz Lightyear and Small World.
12/5 – Visited Santa–didn’t go so well but it’s just as expected.
12/7 – Aunt Mary’s executive MBA graduation from Pepperdine University. He photobombed his dad’s photo.
Nolan continues to sleep for at least 8 hours each night. He still talks up a storm and LOVES anything bright and colorful like television, phones, my red nails and street lights. He graduated to size 2 diapers late last week. We hope he starts to roll over soon since we only have a month left to show the doctor that he can do so. Anxious that his big head is preventing him from doing the big roll. We’re going to amp up the tummy time to increase his neck strength.
Last night was the very first time I got to sit down and really think about the enormous impact Nolan has had on my life (you know, the super sappy mommy moment). For the first 2 months I didn’t feel anything close to this amount of love I have for him today. He may only be 10 weeks old but as I sat there holding him in my arms while he slumbered away for over an hour (with his very heavy head resting on my left arm) the rest of my life with him flashed before my very eyes. He’s walking, talking up a storm, in school, learning math, going to college, getting married…I was so happy but yet also so sad because I wish I had him earlier. I held off on having children focusing on career and enjoying a ton of ME time, but after having him my paradigm has completed shifted. I now believe that everyday that we wait to have child(dren) is one less day that we get to spend with them. And believe me, each day is so precious. If I had him 1, 3 or even 5 years ago that’s an extra 1, 3 or 5 years I would have gotten to spend with him before I die. So does that mean I want more kids now? Maybe not this very moment but I think it has changed mine and Rob’s perspective on things. =)
Look at that face! He can do no wrong with that innocence.
Nolan recently developed a bad habit: chomping on his hands. Not sure where that came from. All we know is that one morning we found that he had broken out of his swaddle and was chomping on both hands. Maybe from the long stretch of sleep at night that got him real hungry?
Today was also his first time at the beach. Here’s a selfie I took of us together that I posted on Instagram. He’s sitting in a Tula baby carrier against my chest as we spent time with Aunt Julie, cousin Lorelai and cousin Charlotte.