I love my girls.
Kaisa is doing well and we are both in love.
Mum and Dad are loving having us all together.
Anyone wanting to visit and meet Kaisa, feel free - just ignore the mess and the compression socks!
This photo tells you all exactly how I feel about my new sister. I love my girls. And now... we are home. Thanks for all the well wishes.
Kaisa is doing well and we are both in love. Mum and Dad are loving having us all together. Anyone wanting to visit and meet Kaisa, feel free - just ignore the mess and the compression socks! With my surgery set for the 7th of October, and my littlest sister showing a real stubborn streak, it seemed she would not be born in time for my surgery! So, Mum and Dad opted for a cesarean. This was scary for them... the last time Mum had a cesarean, I was born. There were so many things that went wrong, and I scared them so much, that Mum and Dad were a bit afraid. When I was born, I was rushed away. Mum only saw a flash of purple, and didn't see me for eight hours. She heard only the faintest cry, and everything happened in a hurry. It was scary. My sister's cesarean brought those fears back to the front of their minds. My sister was still floating happily around, inside Mum. She was 39+6 weeks gestation, so we were confident she would be ready to be born. The doctors did have to use forceps to bring Kaisa out of Mum. She has a bruise on each side of her head, and one of her ears is bruised. Otherwise, she is ok. She needed a moment of oxygen, right at the start, which a lot of cesarean born babies need. She was doing well... but even before she came out of Mum, Mum's blood pressure and heart rate dropped enough to worry the medical staff. They had to watch Mum for a while, and make sure she was ok. Mum did get to hold my sister, and see her and fall in love with her, right away. There was no eight hour wait, this time. There was no plastic cage, this time. It was much better. And this time, while Mum was being looked after, my littlest sister was taken away.. not by running nurses, but by Dad. They spent the first hour together, just them, bonding and falling in love. Mum loves that. But then, that first night, Mum's blood pressure dropped again. She was sweating and shaking and having vision problems. It was scary. We held our breath a little, and waited for Mum to feel better. Because of the lowered blood pressure, Mum couldn't have the strong pain medication. She had to wait for a doctor to be consulted, and then, they gave her panadol. Mum was in a lot of pain. The next day, Mum was feeling better and the doctors finally worked out some medication Mum could have, but it was almost lunch time before her cannula and catheter were removed. She loved that shower! So now, she was feeling better, and we could start to really enjoy Kaisa. Kaisa is the only one of uswho was able to sleep beside Mum, every night, and not have to go to the neo-natal intensive care unit. But, that evening, Kaisa choked on some fluids. She was trying to cough up the goobies inside her, from being inside Mum. Because she was born by cesarean, the goobies were not pushed out of her during the birth. She struggled a bit, and scared herself and held her breath. Her little body stiffened, and Mum ran her to the nurses. As soon as Mum picked her up, Kaisa cried, and Mum knew she was ok, again. For many Mums, that would not be very scary. 'The baby is ok again, everything is fine.' But Mum and Dad... they have too much knowledge. They have seen too much and experienced too much. They have seen me being resuscitated, and have helped me breathe, when I forgot to do it myself. Mum and Dad know that a lack of oxygen can lead to severe cerebral palsy, and they know how difficult that can be. They know exactly what that means. For Mum and Dad, it is too easy to jump straight to worst-case scenario... not because they are worriers, but because they know what can go wrong. After Mum and Dad comforted each other again, they both gave my sister a big cuddle. By then, she was sleeping again, and playing innocent! A pediatrician came in, to study my sister. Mum and Dad held their breath, watching everything he did, with intense scrutiny. When the doctor asked whether there was a family history of hip problems, they couldn't help but think of me, and my hip dysplasia. That's what my surgery is for! But, that hip problem is a result of my cerebral palsy, not a family related problem. When the doctor said Kaisa's hips were fine, everyone breathed out, again. The doctor said Kaisa was fine. That made Mum and Dad feel so much happier. So now, it seems Kaisa is going to be a reflux baby, too. I had severe reflux. I had it so badly, I kept nothing down for two years. Bowen therapy and my second birthday happened at about the same time... and that is when my reflux stopped. Hopefully, my sister will have only mild reflux, and will grow out of it much faster than I did. Kaisa is lucky she is such a cutie! She has very long toes and long fingers. Her nails are long, already. She has my sister's mouth and my nose. She seems a little more like me, in terms of colouring, but her eyelashes and eye brows are so light! Maybe she will end up with red hair, after all. She has wise little eyes, and seems to have my quiet, strong nature. When we cuddled, she licked me and I really kissed her. I loved her, straight away. I'm so glad she is here, and can't wait to have her home with me, every day. Do you know who the first person (after Mum and Dad) who held Kaisa was?
You probably won't guess... It was my Julie! Julie is my favourite Kids' Ward nurse! Julie is currently acting as the Nursing Unit Manager. She has known me for three years, now and has watched me grow up. She used to check my blood and flush my chemo cords, during my cancer days. She always checks up on me, during my hospital stays, and she teases Dad. I love her. And, Julie was the very first person to cuddle my littlest sister. We like that. Thank you, everyone, for the beautiful congratulations and wishes you have given us. It makes Mum and Dad very proud, to feel that love for my little sister. And today, we are a family of five! We'd like to introduce you to my tiniest sister. Meet... Kaisa Elli xx (3.7kg, 47cm, head 36cm) We thought we were a family of four. We sold the baby stuff and settled into our routines. And then, we found out there would be another sister! My first sister and I have an incredible bond. She knows I have cerebral palsy. She knows I need more help. She knows I don't have words. She knows that when I hit her, I don't mean it and she doesn't mind. She knows I love her. She is very strong, my first sister. But... living with me, and walking down the street with me, she will get all my stares and not many people will understand how she feels; to experience these stares everywhere she goes. Before... she had to carry that burden alone. Now, she has a sister, to share everything with. She has back-up, now. My youngest sister was not planned. She was not expected... but, she was meant to be here. We've loved her for nine months, now. We can't wait to get to know her more! Sloppy kisses for Kaisa xxx For my Sister xxx
My Sister Knows (I have cerebral palsy) My Sister Pushes me to the Beach My Cerebral Palsy Classification Return to Home page Return to Blog Visit the Doing it for Dexter Blog This week, my sister got a present in the mail. She was so excited! Our Aunty Eggs painted her three Peppa Pigs pictures. My sister loves Peppa Pig. The pictures are hanging in her room, now. Thanks, Aunty Eggs! (ericamade)
I love school holidays! I've been able to play with my big cousins, every day, and my aunties have been able to help mum out. Aunty Terese took me to the beach. I loved playing with the sand! Can you see where my fingers had been playing in the sand? The sand felt funny. About to be a Family of Five
Upcoming Surgery - Femoral Osteotomy Dexter goes Surfing You Look Funny Return to Home page Return to Blog Visit the Doing it for Dexter Blog I've put off writing this post, partly because it's not going to be a good time for us, and partly because, I don't really understand the procedure. Lenice has tried to explain it to me, and the best I can say is this: Dexter's hip bone is growing at the wrong angle. But, the surgery is two weeks away. It's looming ever closer, so it's time to write this post. Dexter's next surgical procedure is a femoral osteotomy.
It will be painful. It will be painful when they operate and it will be painful afterwards. The pain medication children receive after having this, is morphine. If children react badly to the morphine, the pain medication is swapped to fentanyl. We won't be letting Dexter anywhere near fentanyl, so he better be strong enough to cope with just morphine! Every time Dexter has received fentanyl, he has stopped breathing and has required resuscitation. Dexter now wears a red allergy arm bracelet, whenever he is in hospital, to prevent him being given fentanyl. Even with the red allergy bracelet, there is always a worry someone will accidentally give him some. Once they cut the bone, and re-position it, they will place Dexter in a brace, like the one in this photo. This was taken when the hospital staff were explaining the procedure, and measuring Dexter up for his brace.
Dexter is almost never still. While he can't walk or crawl, he is constantly on the go. He spins in circles, and heads in the direction of the person he most wants to be near. He's a busy little guy, and his determination has always been his biggest strength. Dexter never gives up. One big challenge Lenice and Andrew will face, will be trying to stop Dexter from finding a way to get off the bean bag and start moving across the floor. He needs to stay in the seated position, but Dexter will hate having to be still. After six weeks, they will remove the brace. And this, they say, is very painful. Dexter's cerebral palsy affected legs will suddenly find themselves in a new position. His brain will be forced to forget the old position and adapt to a new one. Parents of children who have experienced this, have warned Lenice to make sure Dexter has extra pain relief. None of this sounds good. But, if Dexter does not have the operation, his bone will continue to grow in the wrong direction. His knees are already knocking together, and he is experiencing pain when he bears weight on his hip.
After the brace has come off, Dexter will most likely have very skinny 'cerebral palsy' legs. He will have lost all his muscle tone... muscle he works so hard to build up. We will be back to square one, again. This is heartbreaking. Again. We hate cerebral palsy. Luckily, Dexter's brace will come off, just as the weather is getting warm enough for us to get him back in the water. Dexter loves the water! He needs full support, but he loves to splash and kick and move. Hydrotherapy is excellent for him, so... we will take Dexter's shrunken muscles to the pool, as often as we can, to help him build up his strength, again. The operation is set for the 7th of October. Dexter's tiniest sister will still be very tiny. Just like Charlotte, she will spend time in hospital, for Dexter, within her first fortnight. Lenice, Andrew and the new baby will stay at the Randwick Ronald McDonald House, and Dexter's surgery will be done at Sydney Kids. Charlotte will stay at their house, no doubt worrying about her brother, and preventing herself from sleeping. She does that... when Dexter is in hospital, or not with her, she worries and tries to stay awake until she sees him, again. That little girl just knows. The first attempt to correct this problem
Dexter's casts from the first attempt Read more about Infant Hip Dysplasia Dexter's Cerebral Palsy Classification A Dexter Day Today, I just want to be a Mum My Sister Knows (I have cerebral palsy) For my Sister Return to Home page Return to Blog Visit the Doing it for Dexter Blog The Townsville Camp Quality Convoy is soon! My friend, Lenny, is driving his ABC People's Truck in the Convoy, again this year. Last year, my name was on that truck. This year, my name is on the truck, again. If you want your name on Townsville's ABC People's Truck, click here. This truck will also be taking part in the i98FM Camp Quality Convoy, again this year. From the ABC People's Truck's facebook page: The "People's Truck" idea was started to give people who don't own a truck or bike the opportunity to be part of our Convoy. In 2013, 85 names were listed on the back of the ABC Peoples Truck and they assisted in raising $6,600 for the kids at Camp Quality - the kids and families that need our help. Looking forward, I am hoping to grow the ABC PEOPLE'S TRUCK into something bigger this year - so please, jump on board and join me for the ride and help the kids. All the money we raise goes directly to Camp Quality families, giving them a well earned break and helping them through tough times, it's a very worthy cause. Get your name on Lenny's ABC People's Truck Click here See Lenny, and his ABC People's Truck at the 2013 i98FM Camp Quality convoy. The video is little long, and very noisy... Just listen to the trucks! These are the fun bits we picked up on - 1.45 Julie and Ron from Ross Transport 3.50 Where is Lenny? 7.30 Marty and Lenny 16.10 Mack Mack Mack!! Find the ABC People's Truck on facebook
Dexter's hepatoblastoma Who is Dexter? Return to Home page Return to Blog No baby news to share today!
Lenice is getting very tired, but baby is very cosy. |
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