Jetson's Journal - from 6 to 9 months
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Aug 1, 2010
Jetson has been the most popular kid in Malaysia - every day he had to pose for photos and/or be carried away to be shown off to others. Maybe it is his blue eyes and blonde hair which is so rare around here, but we think it also his friendly nature and flirtation instincts to look and smile at everyone passing by. He is always putting on a happy face, even when he is really tired. We also got asked quite often if he is a boy or girl, something that seems obvious to us, but not so to the locals, even when he does wear blue.
We bought a portable high chair before we left, one that slips over the back of a chair. It folds up to a very small size, but still fits on most chairs and even has a five point anchor. It came in very handy, though many times there was a high chair available though not always up to Australian standards!
Our holiday to Malaysia went really well. Jetson slept on some of the flight there and on the way home. During other times he was fascinated with all the other passengers. He just loves to smile and flirt with everyone who wants to smile at him!
The weather was very hot for all of us especially during the first few days while we were still acclimatising. It was especially hot for Jetson because of his socks and boots that still have to be worn all the time. This is certainly a time when we are glad he did not have the brace on all the time, although he did have to be carried on Rob's chest a lot which is a hot and sweaty place to be! Hotels were air conditioned, so we always retreated back to the cool room for afternoon sleeps.
There were a few milestones while away, Jetson had his first tooth come through, which was a little painful for him. We upgraded his food texture quite quickly making it so much easier to feed him and added better variety to his diet. (He didn't like the packaged food I bought as back up anyway!!) But the best of all surprises was the day he brought food up to his mouth all by himself. In the pram and slightly reclined, he managed to raise the shoulder enough and flip the lower arm around to make the hand (and food) reach the mouth. What excitement! Unfortunately because he was holding some food that had been on the floor, I told him to stop and took it off him, realising instantly the mistake I had made in discouraging him. Lesson learned - complacency always catches up with you.
A day before leaving to Malaysia, we had an appointment with our orthopeadic specialist, Clem. After the x-ray was done on his hips, he decided that his hip are progressing as planned, and Jetson doesn't need to wear the hip harness during the day time, only during sleep times. This was great news given that we have two and a half weeks of holiday time and swimming to be doing!
On Monday we attended the 8 month Clinic Nurse appointment. Jetson's weight is 6.5kg, which has dropped off on the percentile charts for age, from the 25th to the 5th. It is has been dropping for a month or so, but we think it is explained by his poor muscle tone in the limbs? Now he is growing bigger, those muscle groups should be larger, and they're not. Otherwise all else is going well.
Early Friday morning was an appointment with Dr Peter Honey, specialist shoulder orthopaedic surgeon. We have been waiting for this one for a while now, and still it’s probably too soon to make a really worthwhile assessment. Jetson is still too young to determine how stable and strong his shoulder girdle and muscles are. The shoulder needs to be able to support any muscle tendon transfer that will take place to correct his lack of bicep muscle. Dr Honey was quite happy with the way he was using his arms, and has encouraged us to continue improving the range of motion in the shoulders and elbows, and aim to strengthen them for possible surgery later. If the surgery is appropriate for his case, it will not be done until he is about 4 years old. So in the meantime Jetson will have to learn to do things his own way. In the words of Dr Honey “its like cards… you have to play the hand you are dealt” and he will be all the more stronger for it.
Today was Jetson’s last hydrotherapy session at the PMH pool for his term. He loved it as usual! We will be referred to the next term of hydro which means a 3 weeks break until it starts again. Unfortunately we will miss the first two weeks of this as we will be in Malaysia, but we will make it up by doing daily hydrotherapy in the resort pool while on holidays. Yippee…
Granny is going home today. It has been great having her over to hang out with the grandkids. During the week we have had dinner with the whole family, enjoyed Eliza's fairy birthday party, played botanical golf, spent a day in Fremantle overdosing on chocolate and a final farewell dinner.
Jetson loves to go outside. Whenever we need to distract him, just taking him outdoors seems to cheer him up. Some of the things he gets very excited about are: the bell at the front door, our fridge magnets, the talking boony figurine, his mum and his sister.
Granny arrived from Melbourne today for Cousin Eliza's birthday on Thursday. So we all went out to the airport to say hello and collect her. There are a few things planned with Granny for the next week.
Today was the last session of hydrotherapy until next term, which is a three weeks break. It was a small group, and Jetson was back to his usual happy self, after last week when he was a little tired and grumpy.
Today was an orthotics appointment that had been rescheduled from two weeks ago to get Jetson's new AFO's fitted. Now he has a new big pair again, which makes his feet look small. His feet are very slowly getting flatter and moulding to the right shape. We coupled this appointment with a session with the OT. She assessed him and is now going to make an arm splint for him, so he can get his hand close to his mouth during meal times. This we decided was something he would really benefit from. Although his arm and hand movements are still a little erratic, he will have to practice at getting the food in the mouth. This will be fitted in a couple of weeks.
Hydrotherapy was cancelled today and Nana was already coming over to help out so Clare decided to take the kids to Beatty Park pool instead to do her own swim session with Olive and Jetson. Fun, fun, fun.
Jetson is being very vocal, and has started to say dada and mama. He actually said dada first, but now he is saying mama more often. He seems to say it when he really needs a breastfeed. He knows where it comes from.
We have booked a holiday to Malaysia for the end of July. It will be our first overseas trip with children, so there will be lots of planning to make sure we have what we need. No more staying at dodgy backpackers, we have to unfortunately stay at very nice places… bummer! Jetson will get loads of hydrotherapy – swimming in the resort pool as will the rest of us!
Clare contacted another parent of an Athrogryposis sufferer from Perth. The boy is 16 now and has been through a lot. Although his situation is a little different from Jetson, it was great to chat with someone else who has gone through a similar experience. This boy was born with his elbows and legs bent in tight (unlike Jetson who had his arms and legs straight and stiff). So some of the treatments and operations are not ones we had heard of before, but there were some similar. With her son being much older, there were situations that we have not had to consider yet such as schooling. Throughout his long journey he has been able to play and climb with his peers, and is able to ride a bike and get around independently in his own way. It was so nice to confide in a mother who has been through so many similar experiences and emotions, but was really hard emotionally to consider the future that Jetson may have. She gave me lots of positives, hope and determination to not give up, but I feel for Jetson and the pain that he has yet to endure. He will no doubt be one tough, tolerant and hopefully determined kid.
Today was the long awaited Early Intervention Rehabilitation Paediatric appointment at PMH. A mouthful to say along with a long appointment, the assessment took about 45 minutes, and it was clear from the start that it may go well after the Dr asked if we thought he had any mental delay problems, to which we replied “no”. The results showed that his abilities for his age were really impressive. He completed all the tasks assigned to him with ease – aside from bringing toys to his mouth. This is great news for Jetson (and us), as his motor skills and cognitive development is very good. The program is really designed for babies with an intellectual disability, so he will not be attending this clinic again. This is great news, as we have enough on our plate.
Jetson is really developing his vocal cords a lot. He is saying lots of sounds with his favourite being bababa, we haven’t quite got to mama or dada yet but not without trying! We expect that his first words might be Olive, bath or ‘get these damn braces off”. He is such a great communicator, and will look directly at you and talk, before turning away. It’s fabulous. He is also so personable handing out smiles to all the ladies that even look at him sideways. Everyone things he is “so gorgeous” (that’s the unbiased opinion). His sleep is still very erratic, with some good nights of 4-5 hour blocks, but more often they are not so good with more frequent waking. We have come up with so many excuses as to why, but I firmly believe he is uncomfortable in the hip brace and wants to roll over and get comfortable and can’t.
We attended an appointment at the Independent Living Centre to look at implements, instruments and other things that may be used to assist Jetson as he grows. Most of their equipment is for the elderly and adults with disabilities, but they were able to show us a few things and give us some ideas for future reference. It wasn’t easy thinking about what he needs, as he is still growing and developing and therefore his situation is changing. Many items may only be useful for a snapshot in his life, and some items are very expensive and elaborate. Food for thought I guess.
We had busy day at the hospital today, along with another hydrotherapy session, an appointment with neurology, plus we slotted in to see orthotics in between. Neurology are very happy with his progress and will review him in 6 months time. Orthotics took a cast of his legs to start the process of making the next set of AFOs. He has grown out of the current ones, which he has had for about three months. He has been having a few problems with his toes curling under and catching the toe nail, and rubbing on the splint. Hopefully the new pair can alleviate these issues. Jetson slept all afternoon with such a disrupted morning.
Jetson is getting much stronger and more curious. He sits up by himself, with just a pillow behind to catch him when he occasionally falls back. He is also getting really good at reaching out in front and around him to grab things and draw them back to him. He looks like he is doing hamstring stretches and touching his toes. On the odd occasion of heightened confidence he reaches too far in front and falls face first. With the hip brace on, and the weakness of his shoulders it is too difficult to get back up, so he calls out for help.
6 month immunisations – all went well.
It was our second week of hydrotherapy (but the third class) today, which was enjoyed immensely by Jetson again. He is by far one of the happiest kids in the class. We also joined ‘Kalparrin’ which is a hospital service for patients, to help support families with special needs in the community. They have been really supportive in giving advice and linking us up with services, and things in the community that will assist Jetson’s progress. They also have a service to hook you up with other families with kids with the same condition, so we will wait and see what comes out of that.
The family went to the zoo, our last time before our annual pass ran out. Jetson is just getting to notice the animals now. We'll be renewing our passes so he will get lots of zoo visits in the next year. Olive thinks his favourite animal is a monkey.
We had to cancel Jetson’s appointment today with an early intervention paediatrician, due to him still being sick. We managed to swap it for another appointment in a couple of weeks. We took him to the doctor and got some antibiotic drops. He is now able to sit up in the bath with assistance. We have been holding off Olive getting in the bath with him, however today she was keen to jump in too, so he got his first bath with his sister tonight. Everyone was happy.
Today would have been his second hydrotherapy session at PMH, but Jetson is not well. He caught a bug from his sister, who has had tonsillitis for the previous week. Jetson has started out with a horrible cough which I could describe as a bark. Poor thing, I wish him well, it's so hard when they can't tell you what's wrong. Other news from today is that Clare got a sports nutrition job at WAIS, just ½ a day a week, which will be great for Rob to spend some more quality time with his son! Also great for Clare to keep her finger in the nutrition pie and get some 'me' time.
It was Mother's day today and the first for Jetson. He joined the family in a picnic breakfast in our lounge room, yummy boiled eggs with mini toasts of bacon, avocado and tomato. The day was filled with lots of great eating and drinking, with Nana, Sharon and Paul and his kids.
We recently opened a gift we were given only to find out Jetson's braced legs do not fit into the seat part of it. He can't fit into most baby chairs as his legs splay out too much. So while at the toy library this week we borrowed a seat and play table, which he loves. It is just a bench seat so it suits him perfectly. The down side is that he has to fight his sister over it.
May 5, 2010
We have been trialing solid foods for a week or so now, with some early success. He is not too keen on weet-bix in the mornings, and certainly prefers more sweet things like yoghurt, creamed corn, cottage cheese and banana. We will push on and continue with a greater variety.