Jetson's Journal - 3rd Year
June 28, 2012
The family is off to Bali , staying in Ubud, for 3 weeks.
Jetson had a fall from his high chair, and had to go to hospital and get the wound stapled. It was no worse fall than he has had before, just must have hit his head the wrong way. He did not cry too much, but was a little sad at the hospital as you can see. Unfortunately he cannot swim for at least a week, which will be hard for him in Bali.
June 8, 2012
After a couple of weeks of our assessment of his arm ability, this is what we have observed:
- His left shoulder is slightly stronger than the right, and early on we have notcied he has predominantly used the left arm/hand for feeding, we believe for this reason.
- when using his left hand eating he usually lifts the arm up and drops the hand to his mouth
- when using his right hand eating, when standing he lifts the arm up supported by the left arm, when sitting he rests the arm on the table.
- More recently he seems to chose to use his right hand to eat finger food as he can lean on the table.
- Right hand supinates (to face upwards) more than the left hand/forearm.
- Left hand had the thumb splint when he was 1-4 months old, and the thumb is noticibly different on this hand, but not sure if there is any functional difference.
May 25, 2012
An appointment at PMH with Mr Page (plastics). Jetson had a lollypop and was able to demonstrate his arm movement up to his mouth. Had a free flu injection just before so was a bit grumpy. He will get an ultrasound appointment soon to look at his muscle mass in his leg. Page has explained all the options to us about how to go about improving Jetson's bicep flexion. Minor operations would involve changing the elbow insertion point of the lower arm muscles to extend further up and around the elbow. The more major operation is to take the gracilis muscle of the inner thigh and transfer it to the bicep. This entails an 8 hr op and 7 day hospital stay, but with a much better outcome. Our job is to determine how much real flexion Jetson has in his biceps, without using trickwork. He is very good at adapting and is able to get his hand to his mouth by swinging his arm, arching the back and flicking the hand up, assisted and held by the other arm. Looks impressive! If he already has 90 degree movement they say it’s not worth doing the operation. Will see Page again in August, then book in for surgery at around 3 years of age (November 2012).
Jetson walked up his first flight of stairs all by himself! While playing at a playground on Fremantle on the weekend, he wanted assistance to climb the flight of 5 or 6 steps to get to the level with the slide. So after both Rob and I encouraged him to do it by himself we walked away, not really expecting anything. Next thing we know he has done two steps alone, then we watched him do the last few. It bought a tear to my eye to see him achieve this, as we had not been working on steps very long. The slide has always been good incentive for Jetson to want to climb stairs, as there are not many slides that you can get to without steps going up! We are so proud of him.
March 29, 2012
Another review with Dr Honey. As always Peter was as cheerful as usual, and quite happy with Jetson's development. He explained that he is very pleased with his shoulder movements, getting his arm high over his head. Jetson is usually quite bad at ‘showing off’ what he can do, so this time we took a video (thanks to smartphones) of him brushing his hair, with both arms, which gave a really good indication of how high he can lift the arms. While there he also tried to open the door handle, to show some more of his movement. Dr Honey does not want to do any surgery on his shoulders, but believes that inserting a bicep will be great for developing further the rotation movement in his shoulders. He wants to review Jetson in one years’ time.
On our request again we attended a Physiotherapy appointment with Jen. We were taken into the big kids area (Jetson has really grown up) to do some assessments and movement practice. The difficulties we have at present are getting in and out of the bed, walking up and down stairs and getting down from his high chair. We worked a lot on stair climbing, working out which leg to go up and down with first. Jetson’s right knee bends a lot more than his left knee does, however his right hip is not as strong. So he needs to gain strength in his right hip and leg to be able to make this leg take the first step up which coordinates better with the better bend. We worked on holding onto the rails and using body weight to get the balance right. With the upcoming appointment with Dr Honey, Jen also measured all his joint movements.
Jetson is going through a terrible two stage, throwing some mean tantrums. He is currently 2 ½ yrs old. It is usually a bit of frustration as he struggles to communicate what he wants. He is certainly not immune to the troubles of all kids.
March 15, 2012
Simon Williams apt. at PMH. Our neurologist is such a nice fellow, he just wants to see what Jetson is up to and how he is developing. There was no real need to have this appointment, except for checking up, even though there is no requirement. He ruled out any neurological problem a long time ago. But it is fantastic to know that the doctors at PMH care so much for my little angel!
We had an appointment due with Mr Page, but we had to postpone it for a couple of months because we had already booked our holiday for Melbourne. At this appointment he was talking about booking Jetson in for muscle relocation surgery for his arm, so we will just have to wait a bit longer to find out what they are going to do.
We all flew to Melbourne for Lois' wedding party, our first flight with three kids. It all went well, considering. The kids were all well behaved, Jetson will now sit happily drawing or looking at books for quite a while. Casper is the one who needs containing; he is 6 months old and on the verge of crawling. We were lucky to have Auntie Alli and Uncle Reg visiting from the US, so with those two and granny and grandpa there were plenty of baby sitters to give mum and dad a good rest.
A visit to Orthotics to get the new boots fitted. They were made too long, so the orthotist had to trim them down to size. They are green this time, with two simple straps across the calf and ankle, and none at the toes. There is also no sole on the bottom so now he can wear shoes over the top. He looks like a new kid, and you can hardly tell he is wearing them when he has long pants on.
Clem McCormick orthopedics appointment: Jetson had another x-ray of his hip, which is as expected all ok, and should continue to develop normally. Clem was happy to not see Jetson again for 12 months, which we are happy about too. He did not mention whether to keep wearing the AFOs, but we assume that he needs to keep wearing them for quite a while longer. We read that between 2-3 years is the high risk time for kids with arthrogryposis for regression of club feet, so we are happy to keep them on during this period. We came to the conclusion that we can increase his ‘free time’ a little more though. As has been the progression over the past 2 years.
Orthotics apt to measure up for new boots. He has grown out of the left one too, and has been scraping his toe on the ground.
Jan 18, 2012
Orthotics - cant remember why?
Dec 25, 2011
Christmas day, at Uncle Paul’s house.
Jetson moved into Olive's room, they are now sharing a bunk bed. It was brought about by needing to move Casper to his own room, but we think the two older siblings will love sharing a room together.
It took Jetson a week after getting the plaster off to get back on his feet with any confidence. The wound and Achilles may have either been very tender, or he had forgotten how to do it! But it didn't take too long because he is back up walking again. Soon he will be running and dancing again!
Finally the plaster is off after 4 weeks! It was great for Jetson to be able to have a bath and finally play with the couple of bath toys he got for his birthday.
Camping trip with Paul, Grace and the kids to Bussleton. Unfortunately Jetson didn't get his plaster off before we left although there was plenty to do at the camp site, that didn't involve water or sand. His cousins were fabulous at looking after him, and he especially loved the jumping pillow.
Mr Page appt?
Day 10 post operation there was a change of plaster, including a check of the wound, which has healed nicely. Another AFO fitting took place for the right leg, before another plaster was put on. This time for 2 and a half weeks to make up to 4 weeks total time in a cast.