Jetson's Journal - his first 3 months
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3 Feb, 2010
Jetson is three months old today, although it feels like he has been around a lot longer than that. We are very happy with his progress and development. The treatment of his feet seems to be going as expected so far, and he is moving and bending his arms a little more each day. He is reaching for objects now, even though straight arms seems to be the most comfortable for him. He can bend them a little but his triceps seem to overpower any movements. He sleeps OK, usually waking a few times each night, and during the day he has some good awake time where he chats and smiles a lot. He has mastered rolling both ways, from his front to his back, and vice versa. This can be a problem at night as he sometimes rolls onto his tummy but does not have any arm strength to move his arms up and push himself up or over again. He also has a habit of getting his casts stuck between the railings of the cot, and unable to get them out!
Another unexpected visit to the hospital again!! This time his cast was not slipping, but the constant kicking of his one already hard cast against the other slightly softer not set cast has put a big dent in it, and so we returned to the orthopaedic department for them to reinforce the plasters. Now he has blue legs not white, with a hard coating that they usually put on older kids casts when they are walking and crawling around.
Jetson was taken in to hospital again for another cast change. In fact since his surgery last Thursday, he has had to get the left cast changed every second day, as he keeps slipping out of it. Sunday after surgery, Monday to change the dodgy one, Wednesday, and again today Friday! Instead of keeping it on for a full 3 weeks post surgery. The Little Houdini we call him now. The staff at the hospital are getting to know him (and mum) very well.
Australia day and mum's birthday. The family enjoyed a wonderful breakfast at StickyBeaks playground, with family and some friends. The weather was perfect, and the food was great. After spending most of the morning there talking and playing, we headed home for a lovely afternoon tea of birthday cake made especially by dad. We then packed up to go to Sean Quartermaine's place for a fabulous viewing of the skyshow over the city buildings.
Mum was up at 5am Sunday morning a bit panicked and delirious with the lack of sleep overnight. Jetson has been in pain most of the night with his foot being squashed due to his cast slipping off again! We had been advised that if this happen again on a weekend, that we could soak it off in a bath then come into the department when it was open. However, after the surgery we weren't sure that putting his leg in water was the best idea. So, our only option was to take him into the emergency department at PMH. Waking big sister Olive at 5.30am was rather a difficult task, but we made it to emergency at 6am. Not many other kids there that early, but they started to roll on in as the morning progressed. We waited for the orthopaedic doctor on call to come and see Jetson, and assess his leg. Yes it needed to come off, and be redone. After which the doctor stated that we would need to get it changed again the next day, as he had not done a great job.
Jetson had surgery on his Achilles tendons today. Both left and right tendons in the ankles were cut to elongate and allow the foot to flex fully. Another step in his therapy. The surgery went well, after which they recast both legs. The original cast on his right leg was flexed so much that his toes went white, meaning they had to do it again. He was quite restful for the first 12 hours after the operation, but for the next 48 hours he was rather grumpy - as you could imagine! I think his parents came off worse for wear having to get up extra early for his 7am surgery, which took us a couple of days to catch up on.
Clare took Jetson in for a follow up ultrasound scan of his hip, and we had a pleasant surprise of a night with no casts. While in the department, they decided to remove them in preparation for his surgery tomorrow, a nice treat but boy did his feet smell on the drive home. Jetson got a thorough bath at home, with lots of dead skin removed from between his toes, and we got to cuddle him with no clunky casts on his legs. A taste of time to come.
Jetson got his eight week immunisation injections (1 week late). They normally inject in the thigh, which is difficult for Jetson as he has casts up is legs. It did pose a problem to the nurse, but in the end they successfully gave him his dose to the top section of his thigh. He cried quite a bit at the time, but the immunisations were effective in making him dozy and he slept a lot for the rest of the day and through the night. We found out today that he is to have an operation Thursday next week, a little earlier than we thought. It will probably be the first of quite a few operations.
10 Jan, 2010
Jetson got to meet his second cousin Emily from Townsville. She is over visiting Clare's Auntie Peg and her grandmother. Olive and Emily became great friends when we stayed with her during the trip around Australia. We all had a lovely picnic and walk around Lake Monger. Sharon came for a visit also.
Jetson had his casts on for two weeks over the christmas break, twice as long as usual. We were worried that he would grow too much and give him pain. It did not seem too bad, he is actually becoming more settled at times and will happily lie still for a while now. The doctors are going to change the casts every two weeks from now on anyway, but he may only need one more change before progressing to the next stage of having a plastic cast put on, one that we can take off when we need to give him a bath.
Jetson has discovered his arm - he can't quite get his hand in his mouth, but he is able to lift his arm across his face and have a chew of his forearm. He is also getting more vocal, and sounds like he is trying to start a conversation. All good signs of normal development, which we expect anyway.
Jetson is two months old today, on mum and dad's wedding anniversary! Aunty Sharon came over this evening for dinner with Olive and to babysit both kids, so we could go out for a romantic dinner. We managed again to get Jetson to sleep before we left, leaving Sharon to only put Olive to bed. But I think Olive has her wrapped around her finger, with her falling for the usual delay tactics before bed. Clare and Rob walked down the street to have a beer at the Paddo, and then had lovely dinner at Azure.
31 Dec 2009
New Years Eve! Our first night out without the kids... We left Jetson and Olive at Nina's, with a bottle of expressed milk in case he woke hungry. We had tried it out during the week and he took the bottle OK, but in the end it was not needed and he went into a deep sleep just as we left for a party at Ben H's place. He slept until we came back after midnight and took him home with us, while Olive stayed the night at Nanas.
Christmas celebrations did not stop on the day. On Boxing Day, we woke early again and travelled up to Joondalup for breakfast with Rob's brother Michael and his family, and a swim in the resort pool. Another relaxing day in and out of a pool.
Jetson's first Christmas was spent at home with just the immediate family. Olive woke early following a bad dream and not the excitement we expected from her. However, it did not take long for her to get excited when she saw all the presents under the tree. Jetson got lots of books, toys and clothes. As expected he is not aware of Christmas, though his big sister had lots of fun opening and playing with his presents for him. After present opening we had a lovely breakfast of eggs and smoked salmon. Then went to Clare's brother's place for an afternoon with the Reillys. Everyone was exhausted with all the swimming by the end of the day.
Jetson had his second appointment with the local Child Health nurse, where he demonstrated his advanced skill of rolling over from a face down position. Like his sister, he has determination to get up and look around as early as he can, which is the sort of perseverance he needs to cope with the challenges he is going to have. His leg casts were replaced today, a couple of days early as one was slipping. With the Christmas break he will have over two weeks before they are replaced again, normally it is only one week. We hope he does not grow too much in that time.
We all went to a christmas party at Clare's cousins. Jetson had been a little unsettled in the last day or so, and we may have discovered the reason - we noticed one of his casts slipping off. It means his foot has slipped up to the ankle part of the cast, and is in an unusual position. Unfortunately we will have to wait until Monday to get it checked out.
Today's hospital trip is for another ultrasound scan, which showed that he has delayed development in the hip, not unusual for kids with his condition. Unfortunately they are not sure what to do with him, as this would normally involve fitting a hip brace. So with his other issues of the foot/feet brace and recommended physio on the knee they are unsure what is the best way to address the hip without affecting these other treatments. As the doctor says... Jetson is not really playing by the rules!
10 Dec 2009
Jetson had a consultation with his neurologist this afternoon, though there was nothing new to learn. It was not helped by Jetson screaming the whole time. Some of the consultants are happy to just keep an eye on Jetson and follow his progress. There are some more investigations and treatments that will be done when he gets a little older.
9 Dec 2009
Jetson had his casts changed again, a weekly occurrence. They have nearly reached the full extent of his left knee flexion, though they will give it a few more weeks in the cast to try and get some more. While his bones are soft they will try and get as much range of motion as they can. His Talipes right foot is looking much better and is sitting in a nice position, and is nearly ready for the next stage of treatment.
6 Dec 2009
We all went into the city for the annual Perth Christmas Pageant, and met with Paul and his kids. It was quite a hot day, and thankfully there was some shade for those who were willing to walk a bit further along the route.
4 Dec 2009
Jetson has started to occasionally smile this week. Despite him being more of a crier than Olive was, there is plenty of joy. Each week as they change his casts he gets a bath and they weigh him. He is growing well, though on the charts he is surprisingly heading to a short stature as an adult. Let's hope he has a few growth spurts before then.
2 Dec 2009
Jetson has a new thumb splint, as he quickly grew out of the first one. This one is blue, following his sister's request. It also made his granny happy to see him wearing the colours of the Blues.
29 Nov 2009
Lots of people have said that Jetson looks a lot like Olive did when she was a baby, which is not surprising for siblings. Here are photos of Jetson and Olive side by side, both during their first week. Lets hope they don't look too alike when they are older.
23 Nov 2009
Jetson's granny and grandpa returned to Melbourne after a busy week of getting to know each other. Even from week two to week three, Jetson has gotten bigger and stronger each day. His cries are definitely getting bigger and stronger too. We often don't know if he is in pain from the casts and his joints, or whether it is the usual newborn cries for food, warmth or comfort. We have realised that he has trouble with getting rid of wind, and burping has become our number one priority.
17 Nov 2009
Granny took the opportunity to come along to Jetson's weekly cast replacement, though as they were running late (as usual) he was not allowed to have his only bath for the week - he'll have to go two weeks without a proper bath! It was great for her to see him without his casts as it is only then that you get a full appreciation of the extent of his problems. She also witnessed the harrowing 'sawing' of the casts.
16 Nov 2009
Granny and Grandpa have come across from Melbourne to see their new grandson. It has been a long time coming, especially for Olive. Luckily they planned to arrive a few weeks after his expected due date, as he was nearly two weeks overdue and it has taken a week or so for things to settle down after the dramas of the first few days.
11 Nov 2009
He had his first casts replaced today. The big saw came out, something he will get very accustomed to. It was weird to see his legs without the casts, reminding us that he has a long way to go. He was also given a splint by the physio for his right thumb to hold the hand open. His left thumb has gradually relaxed over the last week, and his elbows seem to be responding well to the physio stretches that we do several times a day.
7 Nov 2009
All the specialists have had a look and pondered this little man, and given his condition the name Arthrogryposis, essentially stiff muscles and joints. You can read more about it here. He has been given the all clear to go home, but we will be returning to the hospital regularly. It was so fabulous to finally take him home and start living as our new expanded family in the relaxed environment of our own home. Olive has been great taking on the role as big sister to her little brother (even though she was adamant that it was going to be a girl).
5 Nov 2009
The staff at PMH have been fantastic, it is great to have the opportunity for such expertise to help us find out about Jetson's condition and get him onto the best treatment. He had lots of visits from specialists and lots of tests performed. He was assessed by Paediatricians, orthopaedics, a neurologist, a geneticist, and a physiotherapist. He had a full body x-ray, an ultrasound scan of his brain, hips and knees, and an MRI of his brain and spinal cord. He has had numerous blood and urine tests. Mum and Dad were seen by the Social worker too. There were a few other tests that they had in mind but decided to spare him! The Orthopods put plaster casts on both legs, which will get changed each week for the next several months.
4 Nov 2009
With each test, and as each of the more debilitating congenital conditions were ruled out, the prognosis got progressively more optimistic. Everyone commented on how alert and healthy he looked, and the fact that he was feeding well - all positive signs. As Clare was breastfeeding, they provided us with a room so we could stay close to him at all times. Luckily Olive had Nana and Uncle Mike to look after her for the next few nights.
"About 9 months ago an angel was sent to us, we called him Jetson! After a shakey start he has proved to be a very tolerant character. Jetson is a wonderful, happy and gorgeous boy and has taught us to appreciate the important things in life. Our motto for life is 'Nothing is impossible - impossible just takes a litte longer' "
3 Nov 2009
Jetson was born on Melbourne Cup Day at the Family Birthing Centre at KEMH. It was suggested that we name him after the winner of the cup, but 'Shocking' did not seem an appropriate name. He was born just before 3am. We were aware that he had Talipes on one foot (also called Club Foot), but he was born with additional problems with other joints on his arms and legs. His fingers and toes are fairly normal, but his elbows and knees did not bend, and he has overall muscle weakness. He was quickly assessed and we were transferred to PMH Neonatal Intensive Care Unit for further investigations. He would need lots of tests to determine what his condition is and what is the best treatment. With only two hours sleep, it was a long day and very hard to take in all the information.