Happy birthday to our little big guy!! What a huge year in progress. There’s so much to say so to make it easier, here’s a quick bullet point re-cap of his progress and current status.
Began public special education pre-school
Started sitting up, but in his own special way (what you would call a “w” position; still needs to be watched because he will fall back without realizing the danger)
While lying down will kick his legs to rotate his body to be in a position of his liking
Does not crawl, stand or walk
Eye contact is more deliberate when he would previously just space out
Better on bigger, more solid snacks but still mostly eating pureed foods
Non-verbal
whines or cries for attention when in need or unhappy
laughs and smiles when happy
Favorite things:
nursery rhymes either in just music format or accompanied by video
books–flipping thru them but especially to chew on
bubbles–watching them and reaching out to touch and pop them
people watching
Mentally we can see that he’s advanced greatly, but still at around a 9 month old child’s age. So don’t be offended if he doesn’t acknowledge you or say hello back if you greet him–his mental capacity is just not all there yet. We’re not even 100% sure if he deliberately responds to his own name.
Being non-verbal along with the advancement brings about more whining and temper tantrums. He can’t tell us what he wants or what is making him unhappy so he will whine until he gets what he wants and it will go into full blown temper tantrum if we don’t figure it out quickly enough. Keeping him on a set schedule helps us predict his needs and wants easier so that we can prevent the number of outbursts in a week. It’s not often, but they do happen and when they do we’re all just stressed to get the little guy back to status quo so that everyone’s happy again.
I admit that our lives are a lot more structured and decisions made around events to attend and travel are highly dependent on meeting Brandon’s needs. I don’t like to say that it holds us back, we just have to find other avenues to enjoy our time together. It’s definitely more stressful so most times we decide to just stay home to make it “easier” on everyone or split up. Tough for mommy and daddy time since its hard to trust anyone to properly care for Brandon. And many people are understandably scared to step in to watch over and care for a special needs child. No one knows him as intimately as we do so if we do go somewhere, its just for a couple hours when we know its the easiest hours to watch him.
Toughest thing for me is that he’s still growing–not up to par with an average 4 year old, but still growing nonetheless. He’s heavier to carry with his dead weight and whether its in/out of bed, wheelchair, highchair, car seat and baths; its just definitely getting harder with every passing year. We’re still in search of the best bath chair or mechanism for me to bathe him since it’s all on daddy now to do so.
Even with all the tough things we’ve had to do to adapt to Brandon’s needs, the very best thing about him is that he is true and genuine. If you ever get to experience his smile and especially his laugh in real life, it is the very best thing in the world. It is 1,000% genuine and will reverberate all the happy feels into your very soul.
Spent his birthday at California Adventure.Enjoying the awesome music and lights at the end of the eventful night.These photos accurately show exactly how Brandon feels about each of his siblings.
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.
Exploring LA.
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!
