Jetson's Journal - from 3 to 6 months
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May 3, 2010
Jetson is 6 months old today. It was also the day of his first hydrotherapy session at PMH physio department. It involved lots of sing-alongs and playing games in the water to facilitate the movement of his arms and legs. Jetson loved it, and so did Clare who had to get in the pool with him. He is 6 months old today and is generally doing what 6 month old babies should be doing. This is the time though that he may start to lag behind a little, depending on how he develops from here.
April 28
At our orthopaedic appointment today Jetson got another hip scan to check the development of his hips. They tell me his hips are improving but he still needs to wear the brace for another 3 months. While there we also saw orthotics to fix up his left boot which still keeps slipping a little. He is almost growing out of the first set of AFO's, his toes are at the end, so we may need to get a new pair made soon, which will be made at a greater angle of foot flexion, so as to really stretch it out.
April 25
We have started to give Jetson some real food, which he has taken with a vengeance. He has been filling out quite a bit lately, growing up quickly, and with more food coming in he will only get bigger and stronger.
April 23
Jetson is coming along really well. I feel like there is finally some little light at the end of the tunnel after almost 6 months. He is starting to sleep a little better, well that's a few days of waking only once during the night since returning from Melbourne, the usual is still waking 3-4 hourly. He is happier during his wakeful times as well. He really is such a great kid, he is sooo happy when he is well rested, and laughs and giggles spontaneously. He absolutely loves his one hour of free time after a bath when he rolls around merrily. He loves his big sister and can't get enough of her, as does Olive love to entertain her little brother.
April 21
Appointments with two different physios today, one manages his general physicality, the other is a splint specialist who has been making his little thumb brace. Cheng is so happy with his thumb development and movement that he only has to wear the splint at night time now. She needed to make him a bigger one, red this time, to adjust to his growing hands. We have also booked in for 9 weeks of hydrotherapy beginning in two weeks.
April 19
We ventured in to the city today to check out the RedBull Air Race. We thought it may be a little noisy for baby ears, however, on the city side of the river it was far enough away, not so noisy, very grassy and shady. On the picnic rug Jetson surprised us with his first rollover with his hip brace on. The physio told us he should be able to do this, but we weren’t expecting it to happen so soon. Hooray!
April 17
We have been in touch with The Australian Arthrogryposis Group (TAAG), and will be getting in touch with some other families who have kids with the same condition, which will be great. We have been doing some more reading about Jetson's condition Arthrogryposis - some online searching and some info from TAAG. In about 30% of the cases it is genetic, meaning that we may be carriers of the gene, and definitely Jetson will pass it on to his kids. The geneticist we saw last month thinks his symptoms fit that category, however our reading of descriptions of the most common form of Arthrogryposis - called Amyoplasia - seem to be a better fit. It wont make any difference to his treatment, but knowing if his condition is genetic has implication if he ever wants to have kids and if we have any more.
April 16
Today is Jetson’s big sisters birthday. Olive turns 3, she is suddenly older to us and she thinks and acts older too. Only a family celebration today - tomorrow there is a small birthday party for her at Heathcote playground and café in Applecross.
April 14
Jetson's Orthopedic appointments have been cancelled without warning. Lucky we rang to confirm the day before. The last two nights have been fabulous sleeping only waking once overnight. Clare is ecstatic! Lest hope it continues
April 12
The flight home was equally pleasing, with not only Jetson sleeping most of the way home, but Olive as well. She was absolutely zonked from the all the excitement. Unlike mum and dad, who had two terrible sleepless nights before leaving with Jetson waking 2 hourly.
April 7
The main reason for our trip to melbourne was a long weekend family reunion in Echuca. This time was spent spending quality time with all the cousins. Jetson had a great time, and was much less unsettled than when at home. He loved all the outdoor activities, and the attention he got from all the family around all the time. Many times he was the centre of attention, and he did not mind at all.
April 5
Jetson had his first trip to the footy, a game between Geelong and Hawthorn at the G. Unfortunately he did not get to see his team the Blues. The crowd noise upset him a bit, but he settled and slept enough for us to see most of the game.
April 2
While in Melbourne, we took a trip to the zoo, had numerous family catch-ups, lunches, dinners and drinks with friends, and Clare and Rob managed to head out with out the kids. Easter was celebrated in a low key manner with family. Olive had a couple of sleep overs at her cousins' house.
March 28
The first day of Jetson’s first interstate trip, and first plane flight. We were a little anxious as to how he would travel, but what a champ sleeping most of the way, with the rest of the time chatting happily to other passengers. He did not cry once, again reaffirming our thoughts that he loves being out of the house.
March 25
An appointment with a genetics specialist sent our minds racing again with loads of new information, some of it very confusing. He believes this condition is genetic. It is very complex to explain, but it is either passed on by one of us, or it was a spontaneous mutation of one of Jetson's genes (which we assume, as neither Rob nor I appear to have this condition - we think!). So there are implications for a next child if it is the former situation as it is a dominant gene (remember high school science?). The more we read the more we disagree with the geneticist. Simply, he appears to have a more common form of Arthrogryposis, called Amyoplasia (translates as poor muscle development) which apparently is not a genetic form. However we are still to investigate, ask more questions and discuss more before making any rash diagnoses.
March 23
Today we submitted applications for passports for both Jetson and Olive. If Jetson is going to be a traveler like his parents and sister, he is going to need one. We are getting organised as we hope to have a trip later in the year to Malaysia. We took a trip to Cottesloe beach in the late afternoon to see the last day of ‘Sculptures by the Sea’. We carried Jetson along the beach while we checked out the sculptures, then enjoyed fish and chips on the grass. We were there well past his normal sleep time, but he was so alert and happy. We have finally noticed that he loves being outdoors. We have spent too much time in the house during the last few months, mostly because it is generally too hot.
March 22, 2010
Over the last few nights Jetson has been waking more frequently in the early hours. So mum thought a visit to the child health nurse was in order to see if there was anything we could help resolve. We ruled out discomfort and potentially pain of the hip brace as it has been 3 weeks now, heat was another guess, as it has been a long hot summer in Perth, finally we are guessing at hunger? So we are going to try and add an extra formula bottle in the evening to try and top him up, and see how this works.
Mar 17
Time for the next round of immunisations… 4 months. He took them in his stride, as he does for all the medical interventions that he has to endure. At least this time he did not have the problem of his plaster casts covering the place where they wanted to inject.
Mar 15
Today Jetson had an appointment with the local Child and Maternal Health Nurse, which confirmed that he is hearing and seeing well, is mentally alert and growing really well. As with many people, the nurse handles Jetson very gently, he looks so fragile with all the casts and splints, but really he does not appear to have any pain or significant discomfort with his limbs. During his one hour of free time each day, he really enjoys us moving his arms and legs about, and giving them a good stretch.
Mar 14
Our first camping weekend away was a success. We decided before leaving that we would try out one night, and if all went well we would stay for a second… which we did. Olive loved the outdoors, I think it took her back to our campervan trip. Jetson also loved the bushy surrounds, and the noises of the trees. He was very happy a lot more of the time than he usually is at home. It rained a few times but this did not put us off, as it was still very warm and our new (ebay) tent has a foyer for protection from the elements. It was nice to get away.
Mar 10
We got a letter from the geneticist today confirming that Jetson’s chromosomes are all normal after tests have been carried out, which is great. This indicates that it is not a genetically linked disorder, but we still have some questions for them when we attend an appointment at the end of the month.
Mar 9
Jetson had an appointment with our physio today. We did a lot of work on his grasping reflex, and are looking at encouraging the arm to bend. If he has an incentive to get his hand to his mouth he is more likely to try hard at it. His natural response when he is happy, distressed or excited is to contract his triceps which straightens his arm. So when he has a great toy in his grip and we help him get it to his mouth, he gets so excited he accidentally pushes it away. This is so instinctive for him. Poor fellow! He is getting better at freely moving his arms when he is relaxed which is more often when he is lying down. The physio has given us some great ideas to assist him at home. We also saw the orthotist to revisit the brace positioning. It looks lopsided to us, but he assures us it is fine. We were hoping a change might resolve some of the sleeping issues.
Mar 5
The 4th was another shocking night of nil sleep with the brace on for poor Jetson and mum. He woke again every ½ hour to an hour crying out, this time dad helped out getting up to settle him back to sleep. So again at about 2 am this time, we took the brace off and he slept for a long block for 5 hours in silence… The third night was better, we propped him up with pillows to make it a bit more comfortable, and he must also be getting used to having the brace on. Mum’s mental state is really not great with all the sleep deprivation of the past 4 months!
Mar 3
Jetson is 4 months old today!! It is hard to believe in four months we have done so much with this little man. We had an appointment with the Paediatrician today to discuss his general development. All-in-all he is a bright and alert baby, looks to still be mentally right on track, and has grown from the 5th percentile at birth to the 25th percentile in weight, length and head circumference. We then had to get his hip brace fitted. It is a brace to hold his legs in a frog leg position, to help with the correct development of his hip joint. This allows better ossification of the boney mass by reducing his passive range of movement. Initially he seemed to like the brace, but by the time we got home the crying started, as he struggled to sleep in it. He woke every half hour crying in discomfort, from 7pm to 1am in the morning… then we took it off, as we all needed some sleep. Jetson (and mum and dad) then slept for a much needed 5-6 hours. We hope he is not in pain, and that it is simply a matter of having to get used to being in that position 23 hours a day. We just hope he gets used to it quickly. The only good thing about the brace (other than helping his hips), is that it prevents his foot slipping out of the AFO’s on his feet.
Feb 26
We were planning on going camping this weekend as it is a long weekend, but have cancelled it as it is going to be too hot. We will aim to reschedule for a couple of weeks time, if we can coordinate with Paul and the kids.
Feb 23
Jetson has finally got his new leg splints, which they call AFOs (ankle-foot orthotics). He will be wearing them for quite a while. They come off only for a bath. They slip off a bit, but unlike the casts we can adjust it back on ourselves. He also had some x-rays of his feet and hips when they took off his casts, and one of his hips is not developing right so they are also going to put on a hip brace next week, so even more to deal with. His poor feet have been squashed in the casts for all of his 3 1/2 months of life, hopefully they will flatten out now as they are a bit more free. Today we also saw the OT, and the physio who needed to adjust his thumb splint. His weight today was 6 kgs.
Feb 16
And again to the hospital!!! Clare is really getting sick of visiting the hospital so often, as Jetson has yet again slipped his foot back again, and needs another cast change. All of us cannot wait to get these casts off.
Feb 15
Another unexpected visit to the orthopaedic department, with Mr Houdini slipping from his cast again. I tried to get the casts replaced with his foot orthotics while we were there, but unfortunately they are not finished being made yet, another week to go.
Feb 13
Today we continued our tradition and went walking with Aunty Sharon at the Canning River Recreation Park. Quite a nice saunter next to the winding river, we started with a cracking pace and ended up a little slower as the temperature warmed up and when Rob had to carry Jetson with Clare pushing the pram with Olive. We enjoyed a rest at the weir, with a little snack and a drink.
Feb 9
Jetson had his casts off today to go into the next phase of bracing, however, after our consultant assessed him, he decided he wants Jetson to go into two independent foot braces (called AFO’s), instead of the traditional boots with a bar attaching them together. He has decided on this mainly because his feet are very different shapes, and this process is allowing the foot braces to be molded to each foot properly. These braces take 2 weeks to make, so instead of going straight into the ‘boots and braces’ he is back in casts again, awaiting the construction of the AFO!! This time the casts are green ones though, as the last lot were blue. This keeps things interesting. We also saw the physiotherapist this morning, who did some play activities with Jetson to asses his grasp skills and rolling ability. She is happy with his progress, and would like to see him ongoing. We also got a pop in from the OT while in the orthotics department, who would like to see Jetson in a few weeks too. He is a popular boy!
Feb 8
Monday we had a review with the neurologist. Fortunately he had more good news for us. After assessing his development, Dr Williams still believes Jetson’s issues are not related to a brain problem. He has great head and neck strength, his eyes track (usually to mum’s voice), and is even rolling over regularly – all fabulous! He will review him again when his casts come off, and talked about getting another brain MRI when he is around 1 year just to confirm his thoughts.
Feb 6
As part of the family get fit campaign, we travelled up to Yanchep National Park, just north of Perth, and spent much of the day there with a bushwalk, stroll around the lake and a picnic. Both Olive and Jetson we backpacked around. Jetson will be delayed in his walking, so we will be carrying him on our walks for quite a while.
Feb 5, 2010
Today we saw the plastic surgeon. Our thoughts were that he would assess his whole upper limbs, however, we discovered part way through the appointment that he was a hand specialist. This was good as we were happy to hear the good news that his hands look great and more importantly are functioning fairly normally. He did recommend that we continue splinting his right thumb to ensure it doesn’t revert back to the inward position it was born in. He noted that Jetson’s biceps are the biggest problem, they are tiny and will not develop properly, however he did discuss with us that there are things they can do improve his ability to curl the arm. Transferring muscles from his chest or back to the bicep is an option to help, but will not be done till he is older, and until we know that his shoulder is stable and if he has good range of motion in his elbow. So he has referred us to a shoulder specialist, to assess the stability of his shoulder. Dr Page was also able to get us booked in more quickly with the physio (rather than in two weeks time) to make another little hand splint for his thumb to keep his thumb extended out from his hand. With a 9am appointment, we were surprised to get home at midday. Luckily Nana brought Olive back after her sleep-over at about the same time!
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