Holiday fun

Hello everybody!
I hope you all had a lovely Christmas with friends and family. We are back from our trip up North. We had a wonderful time and wish we could stay longer. Thomas had a fairly unsettled first day there due to travel, new noises and surroundings. The second day, he was back to himself again. Unfortunately we had to resort to swaddling as when Thomas was stressed, he would have his tightenings so we’ll be working on phasing that out again.

I would like to say to everybody that we thank you a million times a trillion for your help and support towards our Givealittle to raise funds to have more therapy for Thomas for the year 2015. Because of you kind people, we are able to now afford two sessions per week for the year. This is what we both really wanted for Thomas. Due to this, I have since closed the page. I will ensure that I keep you all updated with his therapy sessions throughout the year so you can follow his progress.

Thomas’ feeding is generally a struggle when we are out and about with disruptions to his routine so we kept things real simple while up North. We also introduced baked beans into his diet and this is working really well. We are a little limited with ideas of fattening him up with his dairy intolerance. He is a fussy fellow having tried rice cereal, oats, fruits, and avocado with not much luck. How exciting that he liked the baked beans! I’m getting to be a pro with the blender now haha!

Thomas received lots of fabulous and thoughtful gifts for Christmas like a paddling pool, brightly coloured clown, hand made Thomas the Tank material book, xylophone, bibs, kinetic sand, high contrast blanket and hand knitted Christmas stocking.

We wish you all a happy and safe New Years. 🎉

We NEED your help.

So after a year we finally heard back from the external advisors through ACC who have decided that our claim has not been approved because the treatment for both Thomas and I was appropriate and did not cause the injury that he sustained. It was a very detailed report and was quite informative regarding suggested causes for Thomas’ brain injury.

They have suggested that Thomas had an unexpected (and very uncommon) cerebral sino-venous thrombosis. It says that the incidence of sino venous thrombosis is rare but variable with an estimated incidence of 0.67 / 100, 000 children per year. It then further lists a few risk factors leading to the last one in the list, which is of course maternal pre-eclamptic toxaemia. And there it is!

I am no mathematician so I had to consult my calculator, I mean, my husband. So I am really gobsmacked! It works out to be 67 out of 10 million. That’s less than 1 per million. He really is the definition of less than a one in a million baby. You know I always read statistics and think that it’ll never be me. Well so it is…

And moving on to the topic of ACC. This means that we will face some struggles with equipment and funding in the future. Especially, where therapy is concerned. We decided to go down the private therapy road for physical therapy because we just felt that we had to do more for our boy. It’s so hard to find a balance between vision and physical therapy. Where vision therapy is concerned, I am very happy with the support through BLENNZ and the resources they provide. This is going really well. Thomas has days where you can see him quickly glance at something for 1 – 2 seconds which is a big improvement for him. Up until 5 months old, he didn’t look around at anything.

Where physical therapy is concerned, as his main caregiver at home, I felt I needed to be doing more with him. Thomas does have a VNT through the hospital but she has had to work really hard on sourcing equipment and this meant that physical therapy got put to the side sometimes (not all the time). Also, the VNT cannot come all the time, they have restricted funding allocations too. So we approached Glowkids and it was the right decision.

We are very fortunate to have a conductor who is a sensory specialist teacher at Glowkids. Thomas requires private sessions and these are not funded. It is not cheap. We only want the best for Thomas and to give him the best quality of life. For the new year I would love for Thomas to attend twice weekly however we cannot afford this. So, I have sat on the Givealittle page idea for a good while. I have finally decided to set it up in the hopes that we can access more therapy for Thomas.

Here is what Thomas’ therapy looks like.

Please help us by heading over to our Givealittle page either on the Facebook page or listed on the right hand side of this blog or below. It would mean so much to us to be able to give Thomas these opportunities. Please share with anyone you think will be interested in supporting us.

Thank you 💕

http://givealittle.co.nz/cause/mindingthomas

Wordless Wednesday

Feeding plan update

We had Thomas’ meeting on my 30th birthday. It was bittersweet really. Needed time to digest things although I admit that I had a feeling it was coming.

The ‘feeding plan’ meeting was a discussion around the pros and cons of different kinds of feeding tubes that, according to Thomas’ paediatrician, he will highly likely need extra assistance in the ways of a feeding tube in the next 6 – 12 months. They wanted to ensure that we were aware of the different kinds of feeding tubes so that if we decide on a particular one, that some of them require a lengthy waiting time. We will need to make a decision on whether we want a Peg tube as opposed to the NG tube and if so, decide within the next few weeks so that we are on the waiting list as the Peg tube requires surgery. It is a straight forward procedure and is reversible and if in 8 months time when Thomas is next up on the list for the surgery and he does not need it, then we can say “no thanks.”

At the moment, Thomas is being carefully tracked for his weight and height and he is plotting along the graph (for corrected age) just in there but if he starts to dip down then we will need to supplement with the feeding tube so that he gets enough calories so that he can continue to grow and have energy. My job is to try and fill him up as much as I can but he doesn’t tend to eat much anyway!

As a parent, I feel it to be my responsibility to nurture my child and to need the assistance of a feeding tube to do so is such a hard decision to make because although I’m sure it is for the best, it is letting go and accepting that I can’t do it on my own. It feels like I’ve failed to provide for my child. I never thought that when my first child was 1 that I would be researching different feeding tubes. I spent my birthday feeling pretty lowly. I bounced back the next day like I always do. My husband was really supportive and my mum and dad rang and we talked. I think that it is really important to have family and friends to talk to because although they may/may not be in your shoes, they are experiencing it with you along the way.

1 year today!

Happy birthday to Thomas. The big 1 today! I am so proud of my boy. He amazes me every day. I am thankful to know such a determined, curious, most resilient, loving boy. I have learnt so much from him this year.

Simply that to never take things in life for granted. Appreciating the little big things like interacting through touch or sound when vision is impaired. For even on the darkest days, to look for the light.

Feeding challenges

Wee update: Had a phone call the other day from the audiologist to say that although Thomas did well in the tests, due to his needs, he needs an additional test called CAEP (cortical auditory evoked potentials) to measure electrical responses in the auditory cortex. (Yes, I had to google that!) This type of test is similar to an EEG where they use probes to measure the activity. It measures whether specific sounds are being processed in that part of the brain. Interesting…

Also, we were not meant to see his paediatrician till March but she wants to have a meeting next week with us as well as the SLT, VNT and dietitian to discuss a ‘feeding plan’. I don’t know what this means yet, bit nervous because maybe they may suggest an NG tube, we don’t know?

I have worked so hard to be able to feed Thomas from the breast (in terms of fluid) and it is a great comfort for him as well as really nutritional. We have tried so many bottle teats and not succeeded and the cup feeding is ever so slowly being introduced. Yes, after nearly a year I finally got the ok to feed him from a cup. Picture below. It is see through so I can have more control over how much I give him and the material is soft enough so that I can squeeze it to gently mould to his lips.

Thomas is just over 7 kg and nearly 70cm in length. From what I understand, children with challenges similar to Thomas often struggle with putting on and maintaining their weight. Thomas, also, unfortunately cannot have any diary too which rules out a few fattening up tricks. I feel the feeding to be an important focus for Thomas to ensure that he has enough calories to not only grow but also have the stamina to be able to make physical progress in therapy.

With the cup feeding, Thomas is loving the water but I must admit, most of it is ending up all down his neck and front. I have to be very careful to control the amount of water as it moves so fast that Thomas does not have a fast enough reaction time to swallow so occasionally coughs. This is a concern and of course he is not getting enough fluid this way to satisfy so I am a bit worried about the summer and keeping him hydrated.

Will post an update following our meeting at the hospital during the week.

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.