On July 20th you turned two! I am so far behind in my letters to you. We’ve been having such a fun and busy summer. On your birthday we had a celebration with good friends and family. And of course everything was pink.
This month you…
Explored the Royal Botanical Gardens with ‘High Jumps,’ walking close to the water’s edge, and RUNNING!!! You are curious about everything and you want to walk (or run) everywhere. You don’t want to be strapped into a carrier or stroller, you want down and you go go go until you stop and sometimes you stop often to look into a hole or at an insect. I love watching you interact and discover the world around you.
You had many great adventures Up North at Grandma’s: Sword fighting, baby carrying, roasting marshmallows and eating Smores, using your imagination, swimming, flowers for Abees…you amaze me at the ideas you see and share from the green blotch of paint on a post outside the general store which is a dinosaur. Your love for Sebastian and others make my heart want to burst. You engage with your brother and you help him engage with the world around him. It’s simply beautiful. You even transfer that love and compassion to the strangers you meet who quickly become your friends and are game for a hug. At least the ones wearing pink. And you love swimming. You are kicking more and putting your face under water on your own terms. You never want to leave the water. Must be the Australian in you.
You road a sail boat during the Easter Seals Regatta and you even had a hand at helping to steer the boat! It was difficult to sit still at first, you wanted to follow the boat dog down below the deck but once you settled in with your daddy you were mesmerized by the water and the other boats passing us by. You learned that firefighters help us as they lifted Sebastian in his Red Racer on and off the ferry to and from the island. Whenever you see a fire truck or firefighter now you remind us that they will ‘help you.’
You wear your Pink Sunglasses. You have at least a half dozen pairs. I love how you out them on over your ears and sometimes upside down. I love how you push them up in top of your head or take them off and fold and tuck them in your shirt or dress top. You are a master at those pink sunglasses. In your own way.
You are always helping Abees clean and put on his glasses, upside down. And so earnestly. You still like to put them on from time to time but mainly you help him out. Even when he doesn’t need helping.
You love to following your shadow. Whenever we are walking your companion is with you. Sometimes our shadows play together.
We stopped for pink treats while Seb was at camp. I love our little dates. Sitting across from you. Your excitement at anything pink. Your interest in other kids that come in and your friendly nature with staff and other customers. You are so outgoing. You want to make new friends, especially f they are wearing pink. But sometimes it’s just us and you love that too.
Painting. And balancing. I love this photo so much. I love how adventurous and funny you are! Standing tall, a balancing act. As if you are wearing your first pair of heals. I’m sure you are topless after enjoying one of our homemade Popsicles. You are so fun.
Family Shenanigans at Monarch Park. We had a lot of fun on this day. You were singing songs into your fake microphone. Doing somersaults in the grass. Playing swords with sticks. You made us laugh a lot. Especially Sebastian.
An early, surprise birthday present from a good friend. Watching you anticipate the arrival of your birthday was magical. And each and every gift you got was perfect and new and exciting. It’s amazing what a year can do!
And your pink bike, on your birthday. We went to the bike shop a couple times and each time you road a pink bike with training wheels that was too big. You had tried the Strider but it wasn’t the right color. But we bought one in a box and daddy put it in top of the wardrobe thinking you wouldn’t notice. Of course you did and since you still come into our room and climb into our bed in the middle of the night when you woke up you saw it straight away and said ‘My bike! Pink!’ And even after daddy moved it or covered t up you still knew it was there or somewhere. And you continued to refer to your pink bike and birthday. Such and clever and persistent girl.
What a fun summer we’ve been having. You are so excited to spend your days playing with Sebastian. You wanted to join him at camp and everyone was so happy to greet you both at drop off. And each day afterwards you ran, open armed to greet him. You joined the camp music circles and quickly made friends with girls of all ages and all abilities. And you just see friends. You are so awesome.
I love how you lift things like your chairs and declare ‘Tallula, strong.’ You are strong and I’m so thankful that at two, you already know it. I love you Lula Lu. We all do.
At the beginning of July we had Sebastian’s check-up at the nutrition clinic where Seb sees many doctors in many departments. The good news was that he didn’t lose any weight since his previous visit, 9 months prior. His body fat % is also at a good amount. The bad news was that he’s not growing like he should be; he’s not gaining enough weight. Also that his muscle index isn’t high enough. It’s very difficult for me to write this but at 6 years old, he’s the size of a 3 or 4 year old. My heart hurts.
Since he got his g-tube in January of 2013 he’s been able to stay at a steady weight with some gain. His body fat index has improved. His shoe size has increased. I’m pretty sure his legs are longer but measuring him at the clinic is difficult since he can’t stand independently and even laying flat on a hard board is challenging. Not to mention that to weigh him I am weighed first and then he sits on my lap, since he also can’t sit independently. (It seems there really should be another way at a hospital that specializes in working with kids with physical disabilities.)
Sebastian has been stronger and healthier. He’s been more hydrated and has more energy. He’s had less seizures (not sure there’s a g-tube correlation there, just stating facts). But he’s not growing enough.
Sebastian has had severe reflux since birth, also known as GERD (gastro-esophagus reflux disorder). He had an endoscopy when he was 1 which found a lot of irritation on his esophagus. He’s been on medication for reflux since birth. Previously it was Zantac and Prevacid. While in Egypt he tried Motilium but it made him so lethargic/spaced out we stopped using it. Over time he’s dropped the Zantac and now only takes Prevacid. It doesn’t eliminate his reflux but hopefully it makes it less painful.
Due to Sebastian’s reflux and mobility issues (being unable to sit up independently as well as the way his muscles work and don’t respond the the messages his brain has for them) he can’t eat a lot of foods. He has both a dairy and soy intolerance because they cause gassiness and/reflux. He also can’t eat beans or lentils. Dairy is high in fat. The latter in protein. Some vegetables cause gas, like broccoli or celery. If Sebastian has gas he doesn’t sleep well. If he doesn’t sleep well he can have a seizure.
Since Sebastian has always been able to eat (soft/puréed foods with grains/pasta) he has foods that he likes and foods that he doesn’t. He loves oatmeal. And of course chocolate and coconut ice cream. Quinoa? Not so much.
When Seb got his g-tube I got us a Blendtech and read a little bit about blended diets and tube feeding. I didn’t have the support or encouragement with the nutritionist where he received his check ups nor at the hospital where he got he gtube. I was afraid to do it, mostly because he was still eating by mouth while simultaneously getting fed Hypo-allergenic formula (which lists corn syrup solids as the first ingredient) mixed with coconut milk via tube. I don’t know how much his tummy can handle while eating and I also need to keep him hydrated and he can only drink small amounts via mouth. So I didn’t go down the blended diet route. But I read up in the forums when I could and it was still in the back of my mind.
Fast forward to today. After Seb’s last nutrition visit I started reading his tube feeding book again, Complete Tubefeeding; specifically the sections on fundoplication (no thank you) and blended diets. I went through every recipe in the book. And I started with two of my own. I made blends that Sebastian could eat. With things like ground sunflower and pumpkin seeds: both high in protein and fat but not sensitive for those with nut allergies as his school is a nut free environment and adding a scoop of peanut butter was a good and quick way for me to add fat and protein that I couldn’t do 5 days a week. I also learned that tahini does the same. Even though I add coconut and olive oils to his meals that I make from our meals, it’s not enough. So now I have a breakfast blend and a lunch blend to ensure high fat and protein and his dinners are like ours.
I’m taking baby steps because every change can cause pain and discomfort because of his reflux. I’ve also read switching fully to a blended diet causes a dip in weight that we cannot afford. I’ve gotten advice about powders with vitamins and proteins that can be added to meals to take the place of his formula. But I’m still searching for a nutritionist with experience with children with disabilities and gtubes who also believes in a healthy, whole food diet. One thing I read in the tubie book is that doctors are afraid to let go of the formula because it clearly states fat and vitamin content. It’s a lot of work to make sure you get everything on your own. But it’s not impossible.
Back to school shopping is tough. I don’t need to buy Seb any new clothes because he hasn’t grown out of last years. And those sizes are 2-3 smaller than his age size. It’s not only heartbreaking, it’s scary and stressful. I’m so thankful the gtube has kept him hydrated and healthy and from losing weight. But he needs more. So much more.
I’m keen for any advice in regards to specialists, products, books, etc. Help me help Sebastian grow!
On July 20th we had a big party. Just for you Tallu.
On the day you turned two we were all so excited for you. Your daddy presented you with your long coveted pink bike. As soon as you woke. You knew it was coming. You spied the box on top of the wardrobe the day after you tried it out at the bike shop. You tried to pretend you forgot about it. You did a very good job. But you knew, Tallu. You knew that pink bike was yours.
Sebastian and I went shopping together to pick out the perfect gift and perfect card. Just from Sebastian. He picked out a pink piggy bank which you simply adored. Even more because it was from Sebastian.
Grandma presented you with a bagful of party dresses so you could pick the perfect one for your birthday party. I must admit, I was surprised it wasn’t the one with the most pink.
I waited until after a breakfast of pancakes, your new favorite. Then I presented you with a pretty pink mini-kitchen which your dad helped you put together. I had a lot of party prep with Grandma!
Party! We had good friends over to celebrate you. You laughed and you played. Bouncing and tossing balloons. Sipping on pink lemonade and munching on pink popcorn and pretzels.
And when it was time for cake you helped me blow out you candles on you ‘eow’ (Hello Kitty). Strawberry with strawberry icing. More pink. Daddy helped you cut your first piece. Such a big girl. You are two now!
Of course the day would be complete without a bike ride! We took the party to the park. You were thrilled to ride alongside your brother and your good friend Henry. You had more gifts to open after everyone left and your exhaustion from not napping, in all of your birthday excitement, finally began to show.
It was a perfect, pink party. Just for you, Tallu.
Stay tuned for Tallula’s 24 month post to follow. These summer days make everything go on island time. Kind of. 😉
In December we took the kids and our nephew Logan to The Heidelberg Project in Detroit. Every time I visit Detroit it feels smaller. But this street feels so big. So welcoming. I watched from the car as the boys – Ali, Logan, and Seb – went through snapping photos while I nursed Tallula. Then we joined them. It was unseasonably warm and there wasn’t much snow.
But the trees were ‘naked’ (as Logan used to say). The light was perfect as dusk fell. Creating an even more surreal experience. Our inner artist felt free. Our imaginations stretched. And hope grew as we saw unfortunate lots blackened by arson, dutifully picked up and put together by loyal supporters.
Recently The Heidelberg Project put out a contest on Instagram called #SnapHP. I entered some of my photos and one of them was chosen (the one at the top of this post)! 34 photos (out of over 1300 submissions) will be on display AND available for purchase ($10) in the Number House gift shop until the end of October. Stop by Thursday from 11a-5p or Friday-Sunday from 12-6p to check them out: all proceeds go to the HP.