Hello Bottom Teeth!

Teething…not what I had in mind. I am happy to report that I am pretty clueless within this area having not been through it before. Remember, I’m a first time mummy. So the teething thing right?! Well, the erupting stage has been going on now for well over a week and I can see the tip of the teeth, some nice pearly whites peeking out but they have sort of stalled for a bit just literally broken through the gum sitting there not doing much at all at the moment. They’re blimey sharp things and luckily no injuries while breastfeeding…yet! I live in fear of the event of a nibble or bite. Please no! Anyway, I thought the pearly whites would have fully come through by now but still waiting. I can be patient. For now…

So after Thomas had his cold and went off solids altogether and lost a bit of weight leaving me with a constant worry over his weight dropping quite low on the graphs and requiring regular monitoring, yet again with the teething he has been fussy with his solids. I have read and heard that this is normal for a decrease in appetite during teething so that’s fine that this is a normal reaction but still, it is a worry. He has managed to gain a little over 100 grams over a two week period where he hasn’t been taking in much solids so I am thankful he has not lost anymore weight.

With the teething, comes anxiety and stress for Thomas because it isn’t a pleasant experience for anyone but unfortunately he has been having more tightenings. We saw his Pediatric Neurologist and discussed this with her and it has been suggested that it is more likely a movement disorder (as opposed to seizures) due to his spasticity or dystonia (stiffness of muscles) and that if this disturbs his sleep to the point of making him miserable, then we can start looking at using medicines to relax his muscles however side effects include drowsiness which we are not keen on of course. For now, Thomas seems content so we will not go down that pathway yet. The reason we know it is not seizures is because Thomas had an EEG while having the tightenings and it did not appear abnormal.

On this subject, Thomas’ EEG results were clear. This means that they were unable to detect the hypsarrhythmia brain waves indicative of infantile spasms. Of course, he still had abnormal brain activity but this we already know and Thomas is medicated for this and it appears for now that the medication is working. We are most fortunate that we have a form of medicine that works. I know that this is not always the case for everybody. It is just not fair that these children suffer. It is a hard journey in life. But we have to keep on keeping on for the children.

No news on the orthopaedic referral. Still waiting. Thomas is still a champ in his seating system for feeding. I finally signed up to the CP Society. It’s been on my ‘To Do List’ for so long. I hear from many parents that it is a great support and resource. Go check it out at: http://www.cerebralpalsy.org.nz/

Here are some beautiful pics of Thomas enjoying the Hammock at BLENNZ campus. It was quite interesting to see how Thomas would respond. At first he was a little anxious and I think he seemed uneasy because it was a new and different experience. He was very smart and put his fingers through the netting to hold on. He liked to be pushed quite swiftly. After a little while, Thomas appeared quite alert and stimulated by the experience.

Ah-choo, Cough, Splutter, and Spew Ew!

Yip the title sums up the past week with a new, most unpleasant milestone achieved.

Thomas’ first official cold. 9 months old. Not bad really.

I have to say that I fully jinxed it too. I was literally having a conversation with Joe a few days before it all started saying how we are fortunate that Thomas hasn’t had a cold yet considering that he has immuno-suppression in all. Bugger!

I think that the last few posts Thomas hasn’t had a great time with his eczema and constipation so it’s just been an add on with the addition of the cold.

I don’t know what it’s like to have a typical developing, healthy child with a cold but I’m sure it’s not quite the same experience. I’m sure that it’s the same in the sense that it can make any bubba upset (including parents!) and most especially clingy needing lots of comfort like cuddles. Thomas has certainly been wanting more cuddles.

A plain old cold is a dangerous threat for Thomas due to his immuno-suppression. He’s been put on antibiotics as a safety precaution even though he doesn’t have a fever. It’s really scary because if it develops into a fever we have to take him straight to hospital. For the first time ever, Joe and I kept Thomas in our bed so that we could keep a close eye on him. Just for one night. I didn’t sleep. Thomas was twitching in his sleep and kicking me non-stop! Another scary side effect of Thomas being sick is that his tightenings have come back. Thomas had these tightenings when he was having his infantile spasms. They look like exaggerated startle reflexes although Thomas cannot control when they come on and they are frightening to observe. Thomas also gets distressed when they come on. His whole body stiffens while his legs and arms extend outwards. When he stiffens it can be for 1 – 3 seconds and during this time he holds his breath. We were able to see his pediatrician and she was able to observe this. We believe that it is more likely a movement disorder. He has another EEG coming up soon in October to check for infantile spasms. Because Thomas is not feeling so good, his eczema and constipation have flared up and the tightenings have been waking him or stopping him from drifting to sleep. His whole body tone has really fluctuated this week between really floppy to stiff.

As I write the above I am aware of how it may all sound but for me the purpose is in tracking and recording how Thomas is developing along his journey. Some of it good, some of it not so good.

His pediatrician is referring Thomas to a dermatologist just to see if there is anything more we can do for his skin. The skin test showed no food allergies. He has also been referred to have another xray sooner than planned. He is supposed to be having 6 monthly hip/pelvis xrays for subluxation. He isn’t due to have another till next year sometime but the pediatrician is concerned about his right hip. His legs both point one direction and lately they have not been straight. Sometimes his legs do scissor and boy are they tight. Makes for very difficult nappy changes!

Now, something positive!

Thomas is able to hold onto the shakers and sometimes he gets them to his mouth. It is the most amazing thing ever! At Conductive Education, his teacher gave him two shakers to hold. Of course I thought he’d drop them straight away like he normally does. But no! Joe and I looked at each other in utter surprise but also glee. Thomas held onto them for quite some time. So at 9 months, Thomas can hold onto a shaker and sometimes bring it to his mouth. We went and bought some nice bright coloured shakers and I have been getting Thomas to play with them every day. He is now quite content to play with his shakers. For me, the most awesome part of all this is the cognitive development that is happening. It is most magical to see how many steps it takes to achieve something such as this. Such as; Thomas is aware of the shakers being there in his hands, he knows to hold onto them which requires a tight grasp, he knows to move them in a specific direction to his mouth, he knows that his mouth will make contact with the shakers and where his mouth is. It blows my mind! I’m so proud of Thomas. I know that he’s been so determined to independently get something or anything to his mouth for oral stimulation. And of course, some pics of his awesome achievement.