Oh Lula Lu. I never tire of watching you. This month your imagination and role play has really blossomed. Anything (empty shampoo bottle) and everything (round bottle top) is a telephone. You hold it to your right ear, cocky you head and start ‘talking’. ‘Mmmmhhmmm.’ shaking your head yes or no. Saying ‘no no no’ or ‘Dad-eee’. You hum words as if in conversation. We love it.
You are taking such great care of your babies. I watch you sling them over your shoulder and pat their back. Sometimes you sigh a concerned sigh. You have my old dolls to cuddle which are still a bit big. And your own which got into your arms a bit more naturally. You give them kisses and cuddles. Feed them. Put them to sleep. Have tea parties with them. Love them.
You love to push Sebastian around and are learning how to steer. In the past you just pushed him into walls and sometimes left him there. You now want to see where you are going and make sure to take him with you. You’ve also started taking toys to his tray as you can just reach. You bring a ball over or a toy train and climb up on to one of our laps so you can play with Sebastian. When you see him coming down the hallway after school, you race towards him, shouting ‘Ba Ba!’ and can’t wait to be lifted to give him a big kiss. As soon as he gets home from school you can’t wait to cuddle up next to him. You are also trying to help him do things that you see us helping him do. Sometimes you hold his hand to dance or help guide it to the iPad. Last week you even bent down to embrace him after bath time but didn’t let go until we realized you were trying to lift him up. We gently told you how much we love the love you are showing Sebastian by that Mama or Daddy will pick him up. So you smiled and gave him a big kiss instead. Sebastian was a bit unsure of how to handle the situation as were we. We love to see your love for Sebastian and how you want him involved in what you do. But we also know that it’s important for you to be your own person and not feel like it is your job to take care of him. So we will always encourage that balance.
You love taking baths. You try out some of your swimming skills in the tub, like blowing bubbles. You are still learning that we don’t drink bath water. And you don’t like water poured on your head, even though you are excellent going under the water in swim class. You always stand up in an effort to defy us and the sitting down rule. Perhaps to stop the hair washing business. You splash your brother and play the diving game we created with your little bath toys. When Sebastian does a ‘blast-off’, you want to do one too. You don’t like to get out and once we take the plug out, you put it right back in. So now we have to put it far out of your reach! Yesterday you tried to climb out of the tub and were not happy when I actually took you out. Sometimes if you are really tired, you will point to your towel and let us know you want out. You love your little massage and lotion time but not the putting Jammie’s on part.
You love being tossed into the air and caught or even just lifted up and down. Papa-Daddy gave you your first climbing lesson on the playground. You climb like Spider-girl in the soft gym at babies group on Fridays. Up the slide in a flash, then once at the top, you let go and giggle all the way down. You have no fear. Or perhaps no awareness of the danger of truly falling. The way your body moves with ease and flexibility in and out of positions is something we do not take for granted. Each movement is new to us and we are both mesmerized at your abilities and thankful.
Where is it?
Your little playhouse; the kitchen cupboard.
No more bibs! You refuse to wear bibs. You are such a big girl now! I catch you wearing pretend bibs when you are playing with your ‘babies’. But if I ever put one on you during meal time, you get very frustrated trying to rip it off, discovering that it doesn’t come off so easily. Lucky we have some super (all natural) soap. Otherwise you’d have some very colorful clothes. You started using a big girl fork. Well, I gave you a bit of eggs off of my fork and suddenly you didn’t want to eat anything unless it was off my fork and then only if you were feeding yourself! So we need to get your some real utensils, but your size. No more plastic/silicone. You’ve also started taking Sebastian’s food and prefer trying his over yours. You make us laugh a lot.
Keepin’ it real Basketball with Papa-daddy. It’s true. You are wearing a lot of pink in this photo. But you picked this hat out. And put it on sideways. You’ve got style. I love you you choose a hoodie handing up or a pair of shoes you want to put on when we tell you it’s time to get ready to go. You don’t like to put your jacket on though. But you prefer winter hats over summer hats, leaving them on. And I’m glad. Not only because they keep your head warm but because they look adorable. I’m a hat girl too.
Watching Sesame Street with Sebastian is serious business. Unless someone laughs and then you throw your head back in laughter as well. Not knowing what you laugh at but enjoying it wholeheartedly.
Not getting your way. I love your drama. It’s not always easy and I know it will get more difficult but I love it anyways. I love how you throw yourself down and wail. Like it’s the end of the world. Because right at that moment, for you, it is. The area around your eyes gets red and splotchy and your eyes turn bright blue. Just like me. You take a few minutes and get up and come get a hug or find something nearby that sparks your interest. And it’s not the end of the world anymore.
Bluegrass Brunch: taking a break from all that sweet dancing. You love to dance. The music starts and your hips sway. You’ve started twirling. You clap your hands. You take my dance moves and your dads and come up with yours. The littlest bit of music gets you grooving. A few weekends ago we had brunch while a bluegrass band played and you loved it. There was a little boy there a bit older than you and he came up and hugged you so hard you both fell onto the floor. You got right back up and started dancing. We love your rhythm and your dedication to move to the music.
Sweet sleep. It’s true. I look at you asleep and my heart nearly bursts. You are so beautiful. You sleep in your crib the first part of the night but usually come to our bedroom not long after I go to bed. You toss and turn and cuddle too. If daddy has gone to see Sebastian in the morning the first thing you ask for is him. You nap in our bed and I put the monitor on so that I can sneak away. You need to read a lot of books before nap or bed time. I love how you say ‘boo’ and toddle over to get your favorite one. Two. Three. Four. I’m not sure you would stop. Your favorites are peek-a-boo books, lift the flap, and ones with photos of us in them. You read with more intention now. I see you pick up and book and slowly turn the pages, studying and pointing to each one.
Riverdale Farm. Sebastian had a school field trip and we went ahead to look around before he arrived with his class. You didn’t like the turkeys but enjoyed the pigs, the horse, and even the chickens. I loved watching you walk up to get a closer look and had to make sure you kept your fingers out of the cages! You now know how to make the sounds many animals make, a cow, an owl, a dog and a cat. And you love to see ‘doggies’ when we are out and about.
Funny faces. You are posing for photos. So much fun.
Making Mama happy. I was having a rough day when we took this photo. As I snapped it you made this silly face. And I was happy. Cuddling you. Chasing after you in your pink pea coat, carrying my old Strawberry Cupcake doll. Having a daughter is so fun. But I could never have imagined just how fun you would be. You make us so happy Tallula. We love you. To the moon. And back.
Sebastian doesn’t ride the bus to school.
We live across the street from our neighbourhood primary school. Every morning when I’m backing out I have to maneuver between the parked cars on both sides of our one way street. Many parents walk their kid(s) to school. But not everyone. We use to school bell across the street to gauge how late we are. The first bell rings at 8.35. The ‘late’ bell rings at 8.45. We are late a lot.
Sebastian’s school day starts at 9. Some days we get there right on 9. Once a week we might make it before. The rest of the time we hope for just after. He has two days a week where he has occupational therapy that starts right on 9. Try as I might, he’s usually late. His school day ends at 3.10. I’m ALWAYS at least 10 minutes early. How does that work?
What about the bus? Sebastian doesn’t go to his neighbourhood school (yet-hopefully). I can’t walk him across the street. Or meet him for lunch. Or watch him play on the playground with his friends after school. There is a bus that would come to get Sebastian and take him to school/home. His day would start much earlier if he rode the bus. And last much longer.
It’s likely it would extend his school day an hour on either side. (9-3 would become 8-4). He would have to get up earlier. I would probably have to wake him every morning instead of waiting for him to wake me with his vocals on the monitor. All of these things make me worry about the possibility of increased seizures because it would mean less sleep and more work for his body. On the bus he’d be in his Red Racer. Not a reclining car seat with a pillow for him to lean on. And remember that time I had to pull off the road when he bit his thumb and couldn’t let go? I don’t imagine a bus driver is going to do that.
Sometimes we chat on the way to school. I talk and he listens or laughs. Some times we sing loudly or groove to the music. Most times he’s resting. And as soon as we get to school he perks right up and can’t wait to get in. I’m so thankful for that little bit of time when he can just rest and relax before school. And when I pick him up I squeeze him into a great big hug once we get back to the car. Sometimes he needs a drink because he’s thirsty or has air in his tummy. Sometimes it takes him a bit to settle on the way home and once we are home, he needs a snack ASAP. And we have time for a snack before dinner. Adding in time from a bus ride home and snack time disappears into a very hungry, grumpy boy.
Drop off and pick up at school is a part of our day. For the first week and a half of school I took Sebastian right to his classroom to drop him every morning. That’s how we did it at pre-school and no one told me differently in his new school, so I just kept doing it. One morning we stayed a little longer than normal so I could help show his new PT his awesome moves/walking in his walker. For various reasons we stayed much longer than we should have and that afternoon at pick up Sebastian’s teacher gently told me that I could drop him at the entrance in the morning and there were staff and volunteers that would bring him in. I got it. I really did. Of course that made sense. But it was still hard for me to do. I was thankful that they peeled the bandaid off slowly at first and then really quickly at the end.
The next morning someone was there to greet us before we even made it to the door. Before Tallula got her goodbye kisses in. I swallowed that lump in my throat and embraced another milestone in Sebastian’s life. And it got easier. We made sure to do kisses by the car. And I got to know everyone greeting Sebastian so I could greet them back. What had seemed impossible to let go just became a new normal. I’m good at those.
I did ask from day one where to pick him up. And we wait there every day. Tallula walks around and says hello to the kids already waiting or the various staff. She climbs up on the different sized chairs set out for the other students waiting for their bus. Or their parent. Though most of the kids at Sebastian’s school ride the bus. She spends time with the other kids and I love that. Wheelchairs and walkers are her normal. So are kids that communicate in different ways. She is curious and friendly. Waving goodbye and blowing kisses. And when Sebastian’s class comes out, she sees him and runs towards him. So happy. She can’t wait to be lifted to give her big brother a kiss. Sometimes we have a quick chat with his teacher or EA and sometimes we just reunite and head out the door. I like knowing and getting to know the people that Sebastian spends his day with. His friends that smile and say goodbye, wave to him and his little sister. It is our community.
Maybe he will ride the bus next year. Maybe he won’t. I’m thankful we have that choice.
Monday, Nov. 4
A call came through on the way home from school today. It went to voicemail since I was driving. While we were still in the car I had a quick listen. Doctors are funny. The tell you things in a very clinical way and then ask you to call back and leave a voice mail as if playing phone tag would be fulfilling. Sebastian’s left hip is dislocated. It is what they call ’33% undercover’. I have no idea what this means. She mentions Botox injections and a right hip that is normal. I call Ali even though I know is he busy at work and try not to cry but what am I supposed to do?
Once I get the kids inside and the car unloaded I call and leave a message. Then I call the nurse and have a chat with her. She asks me who his PT is. I run down the list. I’m wondering why she’s asking because they never knew nor suggesting getting his hips checked. I did. I asked the developmental paediatrician about it because we were told he would need an X-ray every year from birth. The last one he had was his second birthday in Egypt. No one had ever mentioned it since we arrived in Canada.
I’m so angry and sad. About a year and a half ago Sebastian started to have trouble walking in his walker with his left leg. We thought his muscles where tight and our PT gave us extra stretches to do for his hamstrings. I’m so sad for all the times I told him to pick up his left leg and move forward. Because he couldn’t. I’m so angry that not one of the three PT’s he’s seen during the last year and a half suggested or asked if he’d had a hip xray. 50% of kids with cerebral palsy get dislocated hips. But I thought his were fine. It’s moments like these that you are reminded who the real expert is. It is not the person with the degree. It is me.
Tuesday, Nov. 5
I spoke to the developmental paediatrician this afternoon. We’ve been referred to the Botox clinic to have a specialist take a look at Sebastian and his X-ray. Discuss whether it will be good for him or not. So now I’ve got something else to research. Seek out folks with experience in this area to talk to. There is a 2-3 month wait for the appointment so I have time. We will also have a follow up X-ray in 6 months time to get an idea how much his hip is moving in what kind of time frame. His last X-Ray was when he turned two in Egypt and it was fine. Now he’s 5.5. We started seeing the lag in his leg about a year and a half ago.
It felt better to talk to the doctor. But I sill felt pretty down all day. And talking to the doctor doesn’t take it away. She said that being in his walker helps and sitting down too much does not. That’s reassuring. Except when you have to depend on others to put him in his walker. He also gets additional stretches in a stander. Because Sebastian is in an integrated education therapy program he gets his physical and occupational therapy at school which means he’s getting out of his chair some of the time to work on skills, move his body and change positioning. He has swimming once a week too which has to help.
Sunday, Nov. 10
We try to make sure his spends time in his walker both weekend days and if we are really busy (out and about) then we walk him around ourselves. An uncovered hip isn’t something that will go away. It won’t get better. I hope and pray it is not painful. I don’t know if he will get Botox in the muscle near the hip. I don’t know if that will help or how. We have a few months before the consult. Which gives me time to do my own research. Find other moms whose kids have experienced something similar.
How did it happen? Because Sebastian has mixed/dystonic cp his muscle tone fluctuates. When he is excited or upset his tone gets tight. He also uses his tone to help him stand taller and walk. I think the tight muscles pull on his hip and slowly over time it becomes uncovered. Overtime it can get so uncovered that the only intervention is surgery. It is very common in kids with cp. It’s another one of those reasons we just take life one day at a time.
Sebastian wanted to be a dinosaur for Halloween. I searched etsy and Pinterest for ideas. I was so excited when I found Pip and Bean on etsy. Their capes were so colorful and bright. I contacted them to ask about whether they could accommodate his wheelchair. They were more than happy to and after a few convos exchanging measurements and a couple photos, they were all set to create a custom dinosaur cape for Sebastian and his Red Racer. And he has a new super hero cape too. Head on over to check out their shop and you will be pleasantly surprised to see a few photos of Sebastian there too…Thanks Pip and Bean!
We did a special photo shoot at the school playground across the street from us, just for Pip and Bean, last weekend. Thankfully we had one sunny day, though it was quite chilly. The dino hat is super cute and warm too.
Tallula and I celebrated Halloween with Sebastian at school. A parade was organized with trick-or-treating stations manned by staff and volunteers dressed up as a variety of fun characters. Tallula and I pushed Sebastian and stopped as friendly faces asked if he wanted candy or chocolate, stickers or books. Chocolate was a popular choice. I loved how nearly everyone knew him by name. Many introduced themselves and ways they work with him or even just as a fan of his recent VMI performance. I was worried (I always worry even when it’s totally unnecessary) this year because the Halloween event we attended last year wasn’t happening. I wanted a safe and accessible place for him to trick-or-treat and he got it!
Sebastian wanted to be a dinosaur for Halloween so I looked on etsy for some ideas. I still haven’t gotten my sewing area fully set up nor have I had any time. So I found someone with real costume making expertise. Pip and Bean. They make fantastic capes, costumes and hats. And this one was made just for Sebastian. They made sure it would work with his Red Racer. And it did. The cape is so beautiful and the hat so soft and warm. Definitely to be worn again and again. For fun dress up days and just when Seb is feeling funky. We love our Pip and Bean cape(s)! Stay tuned for more cape photos.
I like to do matching costumes. Last year Seb and Lula were Gerald (Elephant) and Piggie. This year we went with the Flinstones theme. Tallula was Pebbles. I pulled together her outfit and ours (Wilma and Fred) kind of last minute but they worked! I love dressing up for Halloween. Always have. Always will. Sadly due to the rainy whether we do not have a family photo. But we have the memories. And the candy!
I was looking forward to taking the kids out in our new neighbourhood so we could meet a few of the neighbours we haven’t had the chance to meet yet. I tried not to be deterred by the rain, after all, what are umbrellas and rain jackets for? I imagined we would stand on our lovely big porch to hand out candy as a family after our own trick-or-treating adventures.
The Reality: even though we live on a short one way street, navigating a wheelchair, wagon and umbrellas kept us from getting very far. I was disappointed too when I discovered the neighbor with the awesome ramp I was looking forward to using didn’t have his light on. We know the neighbours on either side of us. Then we ventured to two others on either side of them and met a nice young family with a dragon and the Paper Bag Princess and a very nosy grandma who certainly knew we were new to the neighbourhood and wanted to know how much we paid in rent. The family was very friendly and came down the steps to say hi to Sebastian and gave us double the candy.
We were definitely getting rained on even with the two umbrellas. Tallula wanted to be pulled in the wagon but once we arrived at a new house she wanted to climb out and walk up to the porch to wave hello. As we walked back up our drive the rain began to subside a bit but we were pretty wet and tired. It was bath time for the kiddos and although we waited for a bit for trick-or-treaters, no one showed up. I left our loot on the porch with a nice note. It was empty after bath time.
Holland Bloorview was doing a fundraiser where each coin registered in the raffle donated an additional $5. There were lots of prizes to be won with a chance each time you registered a coin. While raising money for the hospital and also raising some awareness about kids and disabilities I was looking forward to spreading the word, sugar coated. But the coins made it into the bags of rain soaked children so I can only hope they register them to win a trip to Great Wolf Lodge or a new play station among over 500 prizes. You can learn more about the fundraiser at Change for Kids