Hey Sis, Gimme A Little Smooch.
The smallest Jordan turned two and a half on Sunday. It’s become a tradition to make a little to-do of the occasion. A cupcake, a present, and all of us singing Happy Birthday on repeat!
After church and lunch with Brent’s mom, we dug out a few party hats and presented him with his treat.
If you ask him how old he is, he will tell you, “TWO NANDA HAFF!”
We gave him a little Calico Critter’s toy that I got on sale several months ago and had stashed away. It’s a little badger couple with a motorcycle and side car. They even have tiny goggles, helmets and scarves. He’s obsessed with motorcycles and spends half of his waking hours wearing a too-big motorcycle helmet his grandfather gave him. Needless to say, he loves putting the tiny helmets on his new critters and taking them for a drive.
Happy half to the boy who has stolen my heart. Every day, month and year that we get to watch Arlo Redding grow up is worth celebrating!
I’ve been bragging on my boy all weekend. After many months of weekly sessions, Arlo’s speech therapist said on Friday that she’s going to recommend discontinuing all services after the holidays. She feels that he is completely caught up and on par with his peers.
Our experience with early intervention services has been so wonderful. We’ve had the great fortune of getting to know and saying goodbye to both a vision and speech therapist over the past two years. There is nothing quite as wonderful as hearing them say, “Your son no longer needs us.”
Now excuse me, while I pick this boy up and do a celebratory dance around our living room to Katie Perry’s “Roar”.
Yesterday Arlo has his yearly check-up at Duke Pediatric Eye Center. Last year, when he was a little over a year old, we learned through genetic testing that Arlo had Oculocutaneous Albinism type 2 and that his visual acuity was very good for someone with the condition. But they also told us we would need to wait until he was old enough to actually tell us what he could see in order to understand the full scope of how his condition was impacting his vision. In the meantime, we have continued to watch Arlo’s vision improve and have been eager for an update from his Opthamologist.
The first specialist that we saw projected a series of black and white shapes on a screen across the room: symbols such as a house, a car, a hand and a duck. She asked Arlo to identify them outloud. He is shy and usually takes a little while to warm up to new people, but he responded to her requests - quietly saying “hand” or “house” as she asked him what he saw on the screen.
When she covered one eye with a little hand held spoon, we watched as his nystagmus (an involuntary side to side movement of the eyes) began to go crazy. Arlo controls his nystagmus really well, so it was really interesting to watch his eyes react as he adjusted to using vision only out of one eye. I actually think his nystagmus makes him so uniquely beautiful because I notice it most when he is really happy. When he really loves something, his eyes will flutter back and forth like a character in a classic cartoon when they fall in love. It’s such a stunning, visible reaction to joy. It’s as if he always wears his heart on his sleeve, or in this case, his eyes.
The next specialist checked his eyes for a null point. A null point is a corrective measure that people with nystagmus learn to do to control their eye movements. They often find a place in their vision where their eyes will stay still and hold their eyes there in order to see more clearly. Sometimes this also means they have to compensate by holding their head to the side or looking out of the side of their eyes a lot (or up or down, depending on where their null point might be). If it the compensation is significant, sometimes a null point has to be corrected with surgery. Last year, they noticed a small null point in Arlo’s vision when he looked to the left, but this year, it was no longer there. The specialist commented that Arlo has fantastic control over his nystagmus and is able to hold his eyes still, looking straight ahead, when he wants to focus on something. She also checked him for any potential strabismus, which is when one or both of the eyes turn out or inward involuntarily. This is a common challenge with albinism and can often be corrected by patching the strong eye and forcing the weak eye to realign. Fortunately, Arlo has never had any strabismus.
Arlo’s last stop of the day was Dr. Buckley’s chair. Dr. Buckley is a renowned pediatric opthamologist who specializes in eye conditions like nystagmus and albinism. Whereas Arlo had been a little shy and insisted on sitting on Brent’s lap through the first two meetings of our morning, he happily climbed up into Dr. Buckley’s chair on his own. Dr. Buckley did another series of eye exams and gave us the great news that Arlo’s vision is 20/30 in one eye and 20/40 in the other. This is completely average vision for a two year old child as their eyes are still continuing to grow and do not usually reach perfect vision until late childhood. Every website that I have found on albinism states that people with albinism have vision ranging from 20/40 to 20/400. Arlo is already seeing better than the best case scenario for his condition! There is potential at this point, that as his vision continues to improve through adolescents, Arlo could have 20/20 or 20/30 vision. That’s better than MY vision! It feels miraculous to me, honestly.
Dr.Buckley also stated he was really impressed with Arlo’s ability to identify all of the shapes on the first eye test at 2 years old, as they usually have to wait until children are 3 or 4 years old to get a definitive reading on their visual acuity.
Considering that Arlo also had a speech delay of 9 months in comparison to his peers at 19 months old, this is an even greater feat for our little guy! His speech therapy has made huge strides in his verbal communication and has caught him back up to within just a month or two of his peers.
Dr. Buckley told us he has no major concerns for Arlo’s vision at this time. His chance of wearing glasses as he grows up are the same as any other child. Essentially, besides his photophobia (extreme sensitivity to sun light) his albinism is not having any major impact on his vision.
This is truly God’s work. I don’t know any other way to explain it.
I think back to the post I wrote after Arlo had first been diagnosed. I had no idea what an albinism diagnosis would mean for our son’s future. As the years have passed and I’ve met other families and immersed myself in the albinism community, I’ve learned that albinism is nothing to have grieved over like I did in those early days - The fact has always remained that his condition will never stop him from doing anything he sets his heart to do, regardless of how well he can or can not see. But I can’t deny that it is amazing to be where we are right now, with such an incredible prognosis for his vision.
Oh, for the love of this little boy. With blonde curls that render my heart useless. Whose best friends are a stuffed monkey, a yellow dump truck and his big sister. Who lives life to his own tune both literally and figuratively. Who possesses a natural affection for animals. Who thinks nothing of scraped knees and bug bites. Who can go from serious to hysterically laughing with only a few well timed, funny noises made by his mother.
Arlo, you are my skinny legged, blue eyed, happiness.
Early March, 2012:
Late February, 2013:
What a difference a year makes! Same sweet face, same crazy love for his daddy’s longboard, and still rockin’ a hat like nobody’s business - but so much about our son has changed. Since last year he has gained a head full of blonde curls, a mouth full of teeth, and is nearly 6 pounds heavier.
I always love to compare the tangible reminders of our children’s growth. This weekend I went digging through a bin of outgrown clothing so that I could pull out Arlo’s first pair of New Balances (in the first set of photos above) and compare them to the second pair he is wearing now. The first were a tiny size 2 and his new ones are a toddler size 6! It’s amazing just how much our magic boy has grown in the last twelve months.
I’m sure I’ll have to abandon my efforts once his New Balances reach the size of a stinky-footed teenager, but I hope to save each pair he outgrows over the years so that he will have a little collection of his NBs in gradually larger sizes from his childhood. I’m doing the same for EV with her Saltwater sandals. I hope it will be a nice thing to pass down to their own children or to shadowbox and display one day.
This post sponsored by the fantastic selection of Toddler shoes available at the Finish Line
This morning in our kitchen, taking his last dose and “pounding it” with daddy
For the past 602 days, my son has required some form of oral medication. It started when he was ten days old and was diagnosed with a pretty severe case of reflux. Because he was losing weight and unable to keep breast milk down, his pediatrician prescribed his first medication. I remember it feeling so incredibly wrong to be giving my tiny, infant son a chemical substance. I hated the way the smell of it interfered with his delicious, natural, new smell - but it was necessary and we would have done anything to keep him comfortable and growing. We tried dozens of other suggestions and I cut out many foods from my diet, but nothing but the medicine seemed to have any real impact.
At six months old, he was put on medication to try to control the extra fluid caused by the hole in his heart. His cardiologist prescribed it in an effort to hopefully help his heart work more efficiently, help him gain weight and try to give him a little extra energy. There were a few times when he had an ear infection that it felt like we were squirting a syringe full of some substance in his mouth every few hours for weeks at a time.
His catheterization procedure allowed us to immediately end his heart meds and I remember how happy I was to hand the remaining dosage over to the nurse before we checked out of the hospital last February. But every few months, he would outgrow his reflux dosage and we’d have to up it and give him more and more. Eventually the reflux meds stopped working all together and we had to switch to a different one that required constant refrigeration and a drive to a pharmacy on the other side of town who could fill a compounded prescription. We never went anywhere overnight without our trusty cooler packed with ice, a couple syringes and his prescription bottle.
Most babies outgrow their reflux by the time they begin to sit up on their own and start solids, but every time we tried to wean Arlo off of his, his reflux would cause him to cough for hours and cry and arch his body in pain. He was eighteen months old before we were able to get him down to one dose a day and then slowly over the past few months we have given him less and less, watching him closely for any signs of discomfort. A week and a half ago, he took his last dose and has not had any reflux symptoms. We have rejoiced at this accomplishment! Finally! But an overlapping ear infection has meant that he has still had to take amoxicillin every day since that final dose.
Arlo does not think twice about taking medicine. It’s just part of his life experience. He never protests or refuses, but today we gave him his last dose of amoxicillin. Tomorrow, when he wakes up, there will be no syringe to fill. At bedtime, no check and double check between Brent and I that one of us has given him his dose.
This is a day of celebration for our son. Another step towards total health. We know that he will surely have to take medicine for one reason another as he grows, but the daily task of it is over for us now. We are so thankful to find ourselves here. I will always be grateful for the roles these medicines have played in aiding our son as he has had health challenges, but we are happy to see them go.
It sounds silly, I know, but I love to watch my son eat cereal in the morning. I am amused by the way he carefully pulls the bowl full of milk and cheerios close to his body, lowers his spoon gently, and brings it to his mouth. He is measured, taking care not to spill a drop.
I think about his sister at this age, how I could never leave her alone with a meal such as this as it surely would have ended up across her tray and lap. But my Arlo, he is a conscientious little eater. He revels in the task of stabbing chicken with a fork or scooping yogurt onto his spoon. It is a process. Meal time is a pleasing ritual for him.
He will sit happily with a bowl of cereal in front of him for almost thirty minutes, chasing each little O around the bowl with his plastic utensil. And then, the grande finale… with eyes that flicker with anticipation, he will lift the bowl carefully to his lips and drink the remaining milk.
Lowering the bowl again, and milk dribbling from his chin, he never fails to smack his lips and let out an “Ahhhhh!” (His father taught him this)
It’s a small, seemingly trivial event in the goings on of our day but it brings me so much joy to watch the care and attention he puts into savouring and enjoying a meal. If this was (and I suppose it is) an entry in his baby book, I would write
You are 18 months old. I sat backwards in a chair in our living room on Sunday morning and watched you eat your cereal for twenty minutes with such enjoyment. You savoured every bite, careful not to waste any of it. You have discovered how to find pleasure in the ordinary and in those moments, you are teaching me to do the same. I love these lessons and I love you. Milk mustaches forever.