Friday, January 28, 2011

8 Months Hospital Appointment

Today we had our 4th appointment at the Paediatric Outpatient Clinic at the Hospital.  Our last visit was a little too eventful, with us winding up downstairs for x-rays on Joshua's skull, our heads buzzing with the word "Surgery" and a CT scan.  I was hoping this visit would be a little bit less exciting, and I got my wish!  It was the quickest visit yet actually, we barely had to wait 5 minutes for the doctor after having his measurements done and we were in and out in pretty much record time.
The doctor was really pleased by him.  Apparently last time (unknown to me with all the other business) she was a bit concerned by the tone in his neck and back.  This has never been brought up with me by the physios, but she thought he wasn't moving his neck that well and was having to turn his whole body to one side rather than just being able to move his neck.  I can't say I noticed that, and as I say, the Physios never seemed to notice either because this is the first I heard of it.  In any case, she said he looked to be moving a lot more freely and she was really happy with what she was seeing.  She was pleased with his head growth (which is only very small, but some growth is better than no growth) and said his head was looking a lot better than when she last saw him, as the coronal sutures across his head are no where near as prominent and "weird" looking as they were when she last saw him.  I can still see them a little, but I think the fuzz of hair he has now helps a great deal.  I said that to her and she said No, they are lots better and his head has "grown into them" much nicer.  Joshua was also chatting away, she could hear him from up the hall way when we first arrived, so she was pleased to hear him being nice and vocal.
I gave her the run down on how he is going with his physio and the results of their assessments, and I mentioned to her the jerks I have observed which I initially worried were seizures, but after further reading believe to be myoclonic jerks.  She was not concerned, but told me if they start happening more frequently or I notice changes with his eyes while they are happening, then to certainly bring him back in.  I did think once that I saw something happen with his eyes, but I was only looking at him side on at the time so can't be totally certain and I have never seen it happen again.  So nevertheless, I will continue to be on the look out for anything that could possibly be a seizure but not get my knickers in a knot about the jerks I have seen so far....
The doctor also decided that he could now "graduate" to 6 monthly appointments.  So, we don't have to go back until late July unless of course something comes up that concerns me and I want to take him back sooner, or if the physios are concerned about anything and recommend that he come back sooner.  She says the most important thing for him right now is his physio to help with his movement problems.  She asked if I was happy with the Children's Development Team and I said Yes. I really think they are great!  
His "real" doctor, returns from a sabbatical in the United States in April and technically I think we were supposed to go back to seeing him once he returned, but I have to say that I think I like this doctor better, we have seen her twice now at the outpatient clinic and she was the one that gave us the results of his MRI after he was born, whereas this other doctor, although he was technically Joshua's doctor when he was born, we have only seen him once at the outpatient clinic and I found his "bedside manner" to be not as good as this other lady.  She is much more friendly and I feel like she is nicer to Joshua, whereas this other guy didn't do too much in the way of trying to interact with him etc.  Granted he was not quite 3 months old when he saw him last, but still, as a Paediatric Consultant you would think he might be a little more kid orientated.  Oh well, hopefully we will just stick with this other doctor now!  Yay for a good appointment overall!

Current statistics (with percentiles from are:

Weight:  7.86kgs / 17lbs 5oz  (11.3%)
Length: 75cm / 29.5in  (92.6%)
Weight for Length:  (0.2%)
Head Circumference:  40.5cm  (0.0%)

He weighs more than I thought he would, because he was only 7.3kgs on the 16th December!

Monday, January 17, 2011

8 Month Developmental Assessment

I took Joshua to see his Physio at the Children's Development Team today for his 8 Month old Developmental Assessment.  As I mentioned in a previous post, I was pretty sure that he would show some delays, and I was right.
Overall, she is really pleased with him and the progress that he has made over the Christmas break.  He is doing really well and doing a lot of good things, and that DOES count.  Just not on an assessment tool that requires ticking a box saying yes or no.  (Ages and Stages Questionnaire, ASQ)  The ASQ organises results so that for each developmental area they are either "Normal", "Borderline" or "Delayed".  So the results are that he has developmental delays in gross motor and fine motor skills.  (No surprise there).  He is within normal limits for everything else.
I am still concerned about his language development though.  He is noisy, very noisy, but he is still not using consonants like "mamama" "dadada" "babababa" etc.  However, she told me today that he is vocal and using a range of sounds and that is what they are looking for at this age.  Yes, the next step is for him to start making some more recognisable sounds like those previously mentioned, but at this stage there is no concern.  (For them, I am still concerned!)
So our overall goals for Joshua remain the same- weight bearing on arms, sitting, using the right arm more and progressing to crawling.
She said his muscle tone has improved since she first saw him, and like me, she notices that it is worse at some times than others.  She has suggested that I play with him and do some stretches to get him nice and relaxed and loose first before working with him on things like sitting and rolling, and that I try brushing his right arm with different textures to increase his awareness of it before doing activities with his arms.  She was also pleased with his weight bearing on his legs and the fact that he is flat on his heels and not up on his tippy toes which is common among babies with high muscle tone and "jumpy legs" like Joshua. LOL  So we are also to encourage standing up, supporting himself with his arms and playing such as at an activity table.  So, all in all it was pretty good and they say I am doing a great job with him.  Baby Group is starting back up next week too, so that is good.

Sunday, January 16, 2011

The verdict on the Corner Chair

I have to admit that I was pretty skeptical about the corner chair when they loaned it to us.  In some ways I suppose I was slightly resistant to it because it looks like something that a "disabled" person would use and I felt like it was wrong to be putting Joshua in that category already.  I know that is really nonsense, and I am not in denial about the fact that he has issues, but I suppose I felt like he just needed more time to do things on his own before he got given special equipment.  But obviously I took the chair and I use it anyway despite my initial reaction to the idea.  And I have to say, it is great for him.  I am really surprised about the difference it makes to him actually.  When he is sitting in it, he just seems so much more "able" when it comes to doing things with his hands and arms.  We have the Fisher Price Space Saver High Chair which is a great high chair, since we just went on holidays for nearly a month I tried him in a lot of high chairs and the space saver is definitely the best in terms of him being able to sit well in it, and this was confirmed by others on the HIE board as being a good chair for their kiddos that are unable to sit, so I am really glad that I bought it when I did (back in 2008, to use at my Dad's house with one of our foster children) because they are no longer readily available in Australia.  I planned to leave this one at my Dad's and buy a second one for our house but I couldn't get one, so I took the one from my Dad's.  While the seating is great, the tray is not so great.  It sits too high, and Joshua rarely attempts to pick things up from the high chair tray unless they are placed right near the edge closest to him.  In the corner chair, it is a different story!  He is positioned in the best way for him to make use of his arms and he does it no problems!  I am so happy to have it now that I have seen how much difference it has made for him!

Here he is today, picking up and eating quartered grapes while sitting in the corner chair.  I was really so proud of him for being able to pick them up, I didn't really expect him to be able to, but he did!  (so I will be doing this more often for the practice now!)

Thursday, January 13, 2011

Upcoming Appointments

We have two things on for the month of January.  Next Monday we are having a review with Joshua's physiotherapist from the Children's Development Team.  She will do another developmental assessment.  I am pretty sure this time it is going to show that he is behind.  He is making improvements all the time, but he hasn't really done any of those "big" things that she can check off the boxes and say yes he can do it.  He is still not sitting unassisted.  He is making progress.  He can maintain a seated position very slumped over, and I am finding him bringing his back up straighter on his own and lasting a few seconds that way, but we can't yet say that he can sit.  I am also noticing him doing better with pushing up on extended arms. He got an inflatable barrel thing for christmas, it is supposed to be pushed along while crawling, but we are using it to prop him over and encourage him to take weight on his arms.  He is doing fairly well, and I am seeing him get up higher on his arms than he has been.  Also previously he was tending to push himself up on one arm at a time and I have now seen him push up quite nicely on both arms at the same time (but not with the arms fully extended).  So these are great progress but he hasn't yet mastered these skills.  He is getting better with other things too, I am starting to see him hold his body in ways that he hasn't before, such as lay on his back with his feet on the floor but his knees up, or sleeping on his tummy with his bum in the air (which means he is on his knees).  I've also seen him grasp his right foot a couple of times now off his own accord and hold onto it for a while (He is an expert at bringing his left foot up to his mouth and munching on his toes, but wasn't doing it on the right side at all)  So that is also exciting to see him do that, and hopefully he will start doing it more often.  He is also getting a lot better at picking toys up off the floor, he could do it before, but he is definitely doing it with more ease now.  So as I say, I am seeing good things, I am seeing improvements with him but I don't think they are going to be enough to "pass" his developmental assessment this time around.
Well, there is nothing I can do except keep on with what I am doing.  I think he will get there, but in his own time!

We are also going back to the Paediatric clinic at the hospital at the end of January.  This was the only day the doctor is doing the clinic.  I am planning to talk to her about seizures.  I was really worried over Christmas that he was having seizures.  It basically looks like a hiccup but in the shoulder not the chest.  Most of the time it is just a once off, but sometimes I was seeing a little bit of repetition.  I pretty much freaked out, but I've hardly noticed it since then.  It is pretty subtle, I try and show Rod what I am talking about and he doesn't see it.  My main concern was Infantile Spasms, but after talking with the parents on the HIE group on yahoo, pretty much everybody came back saying they didn't think it sounded like Infantile Spasms, and that they thought it sounded more like Myoclonic jerks.   I did some reading about myoclonic jerks and I agree that what I am seeing does sound a lot like it.  This is definitely preferable over infantile spasms.  I will see what the doctor says and whether or not she thinks he needs to have an EEG.  It will be a pain, but we gotta do what we gotta do.....