Reflections

Been a wee while since I made a post on here however I have been posting pics on Thomas’ facebook page so be sure to like the community page ‘Minding Thomas’ to keep in touch. Just hit the ‘like’ button on the right hand side of this blog. ->

I recently posted a link on his facebook page for a piece I wrote on the fabulous Firefly Garden website. World Prematurity Day was on the 17th of November and the piece I wrote was all about our story of having a preemie bub. It was a particularly difficult piece to write because it is where our journey began. Link is below.

http://community.fireflyfriends.com/blog/article/prematurity-our-story

Thomas’ 1st birthday is nearing and it’s not an easy time for me because I’ve found myself reflecting back on the year we’ve had and to sum up, it’s been a really tough year. There was no guide book for us to refer to and no plunket nurse or doctor who could tell us what to expect and how to deal with it. It took a long time to start to meet other parents who we could connect with. The 5 stages of grief did not apply to our situation because the grief cycle is of an ongoing nature. I had so many romantic ideals about what my first child would be achieving by their first birthday and it’s hard some days to avoid those sneaky little thoughts creeping in. They are always lurking there either spoken or unspoken. They’re not always the same milestone thoughts like I wonder what he would look like walking or sitting. Maybe him independently eating food from his hands or getting his hands to his mouth. Joe and I were questioning the other day whether he has a sense of smell. How would you tell with a child with Thomas’ complex needs? All I know is that he has sustained severe damage to the part of the brain responsible for processing a range of sensory information. We know for sure that Thomas has blimey sensitive hearing though. No sneezing allowed in our house without the consequence of a melt down of tears from our boy!

I am of course thankful that Thomas is alive and if he’s having a settled day I’m chirpy as but for the first year of his life most days have been filled with a range of unpleasant emotions. When I first started blogging Thomas was about 7 months old and had totaled 5 hospital admissions not including 7 weeks in NICU. Since then, Thomas has remained stable with no recurrent infantile spasms. Every week, we have therapy, play group and some other kind of medical appointment.

He has a large team that includes: a Pediatric Neurologist, Pediatrician, GP, VNT (Visiting Neurological Therapist), SLT (Speech Language Therapist), Dietitian, Conductor, RTV (Resource Teacher of Vision), ophthalmologist, Home Care for Kids nurse, dermatologist, respite carer, BLENNZ teachers, referral awaiting for Orthopedics. Parent support groups or associations that have been vital include PVI (Parents of Vision Impaired), BLENNZ, and most recently, The Cerebral Palsy Society. There are many facebook groups which I find a comfort. I spend a sizable chunk of my time on the web reading loads of different blogs, specifically special needs focused.

When I reflect on the (almost!) year we’ve had as first time parents, I have learnt a lot about my own strengths. I can’t really process how I have coped. Some days not at all! But I do know that with this journey we’re on I have just got on with it. Joe and I are a great team. We are similar in that we both go with the flow. We have learnt that this is our way of getting through particularly difficult times. Humour has been an important release and distraction as well as food. Gotta enjoy something right. Can’t go out clothes shopping or to the movies so food is a simple pleasure. Family has and continues to be a huge support. I am not the sort to ask for help or things but I have learnt that it is okay to ask for help. I used to think that it was greedy or a sign of weakness but I understand the strength it takes to admit you need support. Both of our families, including extended members have been supportive in so many ways. I am so thankful for the support. This is starting to feel like an acceptance speech I realise (see, some humour!). And the oscar goes to…

Thomas – what an amazing little guy. So incredibly hard as a parent to watch your first (or any) child fight for their life within their first week or so of life. The challenges he faces everyday and yet he will always manage a smile (disregard the steroid treatment of course!) I have learnt that life is all about the little big things. Just things like a smile, a coo, a giggle. The power of interaction through touch. An embrace, a kiss, a cuddle. My son responding to and recognising my voice. It’s all about interaction whether with ourselves, other people or our everyday environment. This year has been all about Thomas learning how to interact with his environment. He has needed ample time to adjust (still is) and make sense of his world.

Quite a few people often ask us if Thomas is getting better or “he’s going to be okay right?”. Thomas is okay as he is. This is his normal. I often forget that we are so caught up in our world with Thomas and how seizures, medication, therapy and regular medical appointments are our normal now. I forget sometimes how this may appear to others when I casually speak about his challenges. When he had just had his brain bleed I spent the first few months in denial, thinking that he would get better or heal. I made a lot of excuses like he’s premature and this will slow his development down a bit but now that I understand the conditions that Thomas has I know that it does not define who he is but it does define the type of challenges and therefore support he needs. Some articles I’ve read have said, ‘why do we have to label?’ – well I believe that the ‘said label’ does help the parent, friend, family member understand the person’s individual needs at the time.

Moving onto the subject of ‘labels’ – Thomas recently received the written diagnosis of cerebral palsy. I’ve always known that he has cerebral palsy but some (not all!) medical professionals are very careful with delivering the cerebral palsy diagnosis just in case it’s a ‘developmental delay’. The reason I always knew he had it is the same reason I knew he had CVI or infantile spasms before he was diagnosed.

Simply, a parent knows their child best.

Oh, and lots and lots of research!

Thomas about 6 months old.

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.

Neurology and more updates…

We had a fairly good visit with Thomas’ Pediatric Neurologist during the week. Joe and I always ensure we go there prepared with questions because the appointment process goes really fast and you otherwise end up leaving annoyed because you forgot to ask something. Usually you also leave the appointment with fresh questions too. We won’t see his neurologist for another 2 months so the emphasis on being prepared is key!

So the good news is that Thomas has not had any worrying signs of infantile spasms but that if they do relapse we will go straight back on to the steroid treatment because Thomas had an initially positive response to this treatment. We will not need to have him re-admitted or require an EEG as they can do a visual clinical diagnosis. Yay! EEG’s are stressful! On that note, Thomas has a follow up EEG coming up to check for the specific hypsarrhythmia wave pattern indicative of Infantile Spasms. Boo hoo!

Thomas is still awaiting results as to whether he has another rare seizure disorder that the neurologist wants to check on. His blood results show that he is genetically fine which is a big relief for Joe and I. This also tells us that Thomas’ brain bleed was not of congenital origin. 

We were able to see a more up to date MRI scan of Thomas’ brain. It showed us that his brain injury was moderate to severe and that he will be globally delayed in all areas. I hope to get copies of this that I can share but in general terms there is a whole lot of white matter missing and replaced with fluid. The white matter that is missing is all on the outside surrounding the brain but also within the inner part of the brain where his ventricles are located which has left him with enlarged ventricles with bleeding still resolving. I’ve posted a pic below so that if you can imagine that part that is missing is exactly where the visual cortex is as well as part of his motor cortex. This explains why Thomas has a severe visual impairment as well as cerebral palsy. The neurologist said that when Thomas is about 2 years old we may have a better idea of what his capabilities will be in terms of development. For now, we will just wait and see how he develops. 

 

After his appointment he had quite a bit of blood taken for more tests. As you can imagine, Thomas was very traumatised by this experience. For any young bubba or child this is distressing I’m sure but double distressing for Thomas because of his lack of vision and an inability to reason with what is being done to him. I gave him loads of cuddles and he settled once we were out of there. Unfortunately, he had an unsettled night and we stayed home the next day which meant no BLENNZ playgroup for the day. So sad to miss these sessions as they are very awesome for Thomas and I. Thomas was still quite grizzly for the most part of Friday so I know it was the right decision to keep him home for the day. By Saturday, Thomas was feeling much better.

Here are some fabulous pics of Thomas continuing to make great progress with his strength during tummy time. In the most recent weeks, he is starting to show an awareness of his environment such as toys or people. He is trying really hard to get anything into his mouth and has learned ways to do this by shuffling around on his back. He does not have the strength yet to get his hands to his mouth or bring an item to his mouth so we help him out here as much as we can. 

Thomas patting the cat.

A very strong man!

Very smart how he moved sideways! He loves the keys on the side.

Thomas loves to suck on the cats ears!