Fantastic Apps for the Vision Impaired.

Thomas was given an IPad for his first birthday. We were very grateful that family pitched in to help with this very expensive piece of equipment. I was able to have a play with different apps at the BLENNZ Parents Immersion Course prior as well as give Thomas the opportunity to use it at the Homai Campus ECE centre. I decided the IPad was the right tool (as opposed to an Android) because of the larger availability of apps. There was especially one I specifically knew about that was designed for children with Thomas’s eye condition but only through Apple devices. 

Here are the apps we use regularly. At the moment, Thomas is using the IPad everyday, sometimes a few times a day and no longer than 15 – 30 minutes. It is part of his Vision Therapy and Fine Gross Motor skills. 

 

I ❤️ Fireworks Lite

 
 

Cause and Effect Sensory Sound Box

  

Cause and Effect Sensory Light Box

    

You can download a bundle that includes the Cause and Effect Sensory Light and Sound Box. Both separate apps. Costs for the full version but cheap.

The Duck Song

  

Storybots

  

There are two Storybots apps that are both free! One is a piano and the other is a whole bunch of songs. Thomas absolutely loves the songs. His favourite is the ‘Elephant’ song and ‘Down by the Bay.’

Fisher and Price B&W High Contrast

  

Tap and See Now

 

If you know of some other fantastic apps appropriate for children with cerebral palsy, CVI or low vision feel free to share. I am always hunting for new apps to trial.

Just add water

Two things…

1. Water.
2. Thomas.

Put the two together and what emerges is a happy little fella. It wasn’t always this way though, oh no. For the first six months or so bath time was an unhappy time for Thomas and myself. In the end we had to resort to wrapping him. Due to Thomas’ cerebral palsy, his muscles move involuntarily without warning so bathing was tricky business but because Thomas has CVI (very low vision – almost blind!) this contributed to his anxiety levels being on high, constantly. Bathing was an especially anxiety inducing experience. When Thomas gets a fright, he will stiffen up and his arms and legs spread out wide. Imagine this in a baby bath! Fun times!

So the wrapping was recommended and boy did it make a difference. It wasn’t a sudden difference, more a gradual thing. I can remember when Thomas was wrapped and I unwrapped one arm to clean him and then I must’ve forgotten and left it unwrapped for a moment and when I realised this I noticed that Thomas was okay with this for a short duration. It was a gradual process of this overtime that encouraged Thomas to feel confident enough to have his arms free. He eventually moved into a specialised bathing chair and it wasn’t until about a few months ago that I stopped wrapping him for bathing. I would wrap him to keep him secure at the beginning of the bath and then unwrap during. After his bath, he would get quite unsettled due to being transitioned from different areas. I resorted to keeping his arms secured until he was quickly transferred into a towel where I then wrapped him up tightly. The crying would continue once the creams and clothes were initiated.

I think that time is the biggest factor for Thomas. He has needed more time to adapt to his environment. I have learnt a few tricks like wrapping and distraction but I believe that time and a solid routine are key. What I also find interesting is that not only has Thomas adapted to the experience of bathing, he actually has a love for water. It is also such an awesome thing that Thomas can communicate his love for water in different ways. When in the bath he will open his mouth for me to trickle the water in with the detachable shower head. I give him a countdown for when the water stops and he cries in protest! When cup feeding him water, he becomes really animated by making noises like happy sighs and even a couple of squeals!

When in the pool, wow! Very animated also! Smiles and happy sighs and a bunch of exciting noises! It’s his happy juice!

Enjoy the video!

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.

Learning Resource Fun!

I am not a big crafty type fan but making resources at school for teaching was always good fun. It was a blast to spend a good few hours this weekend making resources for Thomas at a two day Parent Immersion Course through BLENNZ at the Homai Campus in Auckland. I missed my boy and he certainly missed me. It was delightful to have a cuddle, a smile and coo of recognition from my little man. Ahhhh so delicious!

I loved meeting, sharing, and connecting with lots of lovely, friendly, and open people at the course. Lots of hot topics to discuss like equipment or funding. Always informative learning from others going through a sort of similar journey. For the first 5 months of Thomas’ life, it was a lonely and confusing time because I didn’t know what Thomas’ difficulties were. It was a challenging, and often depressing time not knowing how to bond with a child who cried a lot and had little to no vision. I didn’t know how to play with or engage with him. I had so many ideas in my mind that I would romanticise about before I had Thomas like my baby looking me in the eyes, reading lots of picture books together or pulling funny monkey faces and big toothy grins. 

Since finding out Thomas has CVI from around 5 months onwards, I was able to learn new and different ways I can interact and engage with Thomas. I have written about the Sensory Room before in an earlier post which you can read about, but this was really where it all took off for Thomas. He really came alive. It stimulated him and enabled him to experience and explore his environment. This also allowed me to start to work through letting go of my romantic notions. 

It has been a real education for me to discover the delights that items such as tinsel, vibrating pens, beads, chains, pom poms, feathers, rippled cardboard, and bells can deliver.

Not only did I make some fantastic resources, I bought a few things too which you’ll see Thomas playing with. This is also the first time Thomas has used his tray for play. What a star!

Resources I made

This is a cat’s toy but perfect for Thomas to get his fingers through and hold on to!

See look at him go!

Not real grass hah!

Some neat textures and sounds.

I had a lot of fun making this book!

Sparkly, shiny and makes a fabulous sound when moved on the tray. Thomas particularly liked the gold beads.

Back into it!

Whoa it’s been a while since I made a post! Week 2 of the school holidays flew by so fast. We had a great second week with Nana (my mum!) coming to stay for the week. Lots of busy busy happened and it seems that the busy just keeps on going.

Back into Conductive Education (CE) and BLENNZ this week. Thomas had a really good session with CE. I must admit it is sometimes a bit much to do Thomas’ therapy every day, and most especially when he is ill. Having recently been ill, we have managed to get back into his therapy properly again. I know the therapy is really good for Thomas but it’s no good for anybody if he’s feeling poorly. I want him to feel comfortable and thus receptive during his therapy. Thomas’ therapy includes some blanket swinging (to activate his vestibular sensory domain), guided rolling, head control work on a gym ball, leg and arm stretches throughout the day, head control work while being lifted on my lap, head control while sitting and being held. Common theme here is head control. It’s a big focus of ours at the moment. Thomas can lift his head and move it about but he can only hold it for so long so we are working to help Thomas gain better strength in this area. I believe that Thomas is making progress in this area but at his pace.

Same goes for his vision. I believe that his vision is improving because he seems to quickly glance at something and then look away quickly. He may do this a few times in a row which tells me he can see something and this is pleasing. What he can see I haven’t a clue but I know that he can so I am happy with this. Thomas continues to love his sensory room and spends lots of time in there during the day as well as playing with his tinsel or shakers.

Thomas had an EEG to check for infantile spasms. We haven’t heard back yet. Couldn’t get him to sleep during the process when instead he was wide awake after having a breastfeed and cooing. As I expected, he was very upset with the electrodes being put on his head and of course removing them at the end. I made sure to get all the paste out while it was fresh otherwise it dries in the hair and is a nightmare to remove later on. Thomas had his x ray as well and this went smoothly. In and out! No word yet on this.

Had a really informative, fairly positive meeting with Thomas’ dietitian. She was really lovely. She encouraged me to make Thomas’ own meals which I have always been keen on but haven’t found the time or energy to do. She had some ideas on foods we can give him to encourage him to gain weight. His weight has gone downwards on the graph that they keep track of so she said we’ll be watching this carefully. She did say that he looked really healthy which is good. Thomas’ eczema has been better lately since I cut dairy out of my diet. Did you know that Oreo’s are diary free? Also, Almond Milk is quite yummy. I am thinking that this dairy free diet is a good idea as it means I am restricting a lot of stuff that I would normally eat that is not that great for me like chocolate, ice cream, cream cheese and biscuits like shortbread yum yum! Unfortunately cruskits contain milk solids WHAT!?

Anyway, on the topic of food, we bought a hand blender. Mum and I were busy making all sorts of meals. I can’t believe how easy it is. Thomas doesn’t seem to notice the difference in taste either. Another exciting thing I’ve noticed him doing lately (but not always) is chewing with a coordinated tongue action and it’s amazing! Another big development this last week is that Thomas has been having most of his meals in his seating system. At first he didn’t like the chair and his head kept dropping but he’s getting used to it and learning to raise his head for food. I sometimes need to help him keep his head up and he doesn’t seem to mind this either. I am so relieved that he is adapting to this new seating system.

 

Respite care is going really well although Thomas cannot bottle feed, we are using a spoon to give fluids for now as well as lots of solids. The syringe was really tricky and it’s not the safest option. The dietitian recommended a special cup we can try. That appointment is tomorrow. This weekend will be the first time since Thomas’ birth that I will be spending longer than 4 hours away from Thomas. (excluding NICU of course!) I will be attending a conference for PVI (Parents of Vision Impaired). Here is the link for their website if you would like to learn more: http://www.pvi.org.nz/ 

A pic of Thomas and I at the new cafe, Route 16, in Kumeu. I have finally managed to update the ‘Epilepsy’ page on my blog. I am currently working on the ‘Cerebral Palsy’ page and ‘NICU’ is still incomplete. 

School Holidays Week 1

So we’ve had the new buggy and seating system for a wee while now.

How’s it going? Well, like all new equipment, it is taking Thomas time to settle in. The good news is that he doesn’t seem uncomfortable while in the seat and while it is in motion he seems pretty content.

Unfortunately (I hate that word!) he still gets titchy when we stop the buggy in motion but Thomas is the same in the car when it stops at traffic lights. Blimey red lights! Anyway, that can’t be helped and I’m sure this is something that many other bubbas get finicky about?! I don’t actually know this but I’m sure it can’t just be Thomas doing it hah! Also, as part of Thomas’ eye condition, motion is ideal for him as opposed to being static so I can totally understand this. Anyway, the other difference I have noticed for sure is that Thomas is more exposed in the buggy because like other prams, they usually have a cover or sides whereas his buggy doesn’t have that. So he’s very… out there in the open.

The seating system is not going so well. We have had his lovely speech therapist around to watch him feed in it and Thomas is struggling to move food to the back of his throat so yeah your right, it all comes out, well most of it anyway! His tongue thrust, I’ve been told, is most likely due to his condition. I’m assuming this must mean, his poor muscle tone. His head keeps falling forward because he doesn’t have full head control so the seat itself cannot, so far, support his head. I’ve been told there isn’t anything else we can try so this means that I must feed him while holding him. At the end of the day, I’ll do whatever I can to get food into Thomas because his weight is another concern. I want to ensure that he gets as much food as he can so that he can grow and have enough energy to do therapies too. So, I’ll feed him in my lap for now.

Thomas’ weight is going to be carefully tracked by his GP. She also gave us a special authority to access formula that would not upset his tummy or skin. We tried (at the pediatrician’s request) to keep giving him normal formula but he started to develop a red rash instantly on his face. His GP was very understanding. It is so good to have a GP that is willing to do whatever she can to help. I often find the pediatrician’s do not see Thomas as often and due to this are quite distant, or as willing.

We are also having no luck with a few different types of bottles and teats. Thomas refuses to latch. He’ll just push away, cry, gag, or munch on the teat. Our options are to try cup feeding, positive sensory touch, syringes (in desperation and most obviously with great care!), persevere with the bottle or try an orthodontic type teat. It is most frustrating because he has latched a few times before but for some reason he just doesn’t want a bar of it. I would like to be able to leave him with a carer but it’s not that straight forward feeding wise.

Thomas is working his way back into having regular meals of solids after going off them during his cold. He is quite fussy with what he likes. At the moment his favourites are kumara, carrot, pumpkin or potato. He’ll be weighed by the dietitian who is coming next week so it will be interesting to see if he’s regained the amount he lost. Next week we also have his follow up EEG and hip x ray. I hate the process of EEG’s. We have to make sure we keep him up so that he is tired enough to fall asleep during the EEG because they get better readings of the brain’s activity that way. This is particularly difficult to do because Thomas will be over tired and get really worked up when they apply what feels like a trillion electrodes (only like 30!) to his head with glue and tape. Thomas is very sensitive to touch. So, it’s not a very fun experience for anyone. I always feel a little sorry for the person facilitating the EEG because they must find it tricky trying to concentrate with all that crying and screaming. This will be Thomas’ 4th EEG this year!

Because it’s the school holidays, Thomas does not have his BLENNZ playgroup or Conductive Ed therapy sessions. It is quite nice to stay at home and concentrate on his new buggy. I have managed to take him out to see Daddy at work too! I am looking forward to having my mum come to stay and help out. We have also managed to find our own carer and can start to use the respite hours. She will be starting tomorrow.

Hope everyone is keeping well and enjoying the new season settling in. The weather being a bit warmer and sunnier certainly helps cheer me up. 🙂

Pics below of Thomas in his seating system. The chair can be removed and placed in the A Frame system below or in the buggy frame. We are trying to pop him into the chair at once every day so that Thomas gets used to it.

A quickity quick update

Thomas had a successful trip to the Babyonthemove store to look at different car seats. Thomas needs a car seat with lots of padding to support his head and body. He will need to remain rear facing perhaps up until 3-4 years old. This car seat that he will be getting is to see him through the next 6 -12 months. His needs will be re-assessed again after that. The winner today was the Evenflo. I’ve posted a link here so that you can check it out. Thomas seemed pretty comfy when in it. I liked it because of the extra padding and that the padding not only supports Thomas’ body but that it makes him feel more secure too. Thomas has been really good lately when traveling in the car because he has his favourite kitty cat toy that he loves to play with. He spends all his time either sucking on the cats tail or trying to get the tail into his mouth. It is so nice to see him independently doing this. I’m very proud of him.

Tail in position ready to be sucked on!

http://www.babyonthemove.co.nz/car-seat/toddler-car-seat/Evenflo-Platinum-Symphony-DLX

The other great news is that Thomas should be getting the car seat within the next month!!! Still no buggy but when we do get it I’ll be sure to add lots of pics. We have been told that his buggy that converts into a seating system has an attachment which means that Thomas can be sitting high at a table or lower to the ground.

Thomas’ vision teacher dropped off his resonance board today. Thomas has not used a resonance board much but over time he will build up his confidence. Link below about resonance boards. http://www.deafblindresources.org/article/resonanceboards.html

Thomas’ eczema is slowly clearing up. He has a skin test next week to check for any allergies. Joe and I are thinking maybe cows milk allergy? The reasons being that Joe had the same allergy when younger, Thomas threw up the formula he had and refused taking anymore, and when I have anything too creamy his skin seems to flare up. I’ve since cut out creamy foods out of my diet.

His ophthalmology appointment showed no changes in his eyes. He does have a left eye misalignment but fixing this with surgery would be for purely cosmetic purposes to make the eyes look aligned. We are comfortable with the way Thomas is. Yes, his eyes are sometimes a little wonky and uncoordinated at times but that’s because his brain isn’t communicating properly with his eyes. His eyes are healthy so we will leave them be for now. The ophthalmologist suggested we look at trying glasses in a year or so to rule out refractive errors but otherwise we won’t see him for another year.

We have been given the same brand of bottle (Dr Browns) to trial from Thomas’ SLT but the teat is different. We are going to see if it is the flow of the teat that is causing difficulties for Thomas. She has given us a premmie teat which has the slowest flow. The task now is to trial both bottles and see which one Thomas prefers. Thomas continues to enjoy (most of the time) eating solids. He has shown a preference for sweet potato, carrot, pumpkin, pears, and fruit salad.

Lastly, Joe and I finally got around to advertising for respite care. Now we must wait and see who is interested in applying!

It’s only Wednesday!

Yip, you read that right. It’s only Wednesday!

So far this week has been a bit (just a bit!) of a downer really. We had a great session on Monday with Conductive Education and we were able to meet and work with two lovely therapists but to be honest it’s all very overwhelming. They have given me two detailed lesson plans of all the therapy work that I am to maintain at home. I think it’s wonderful that we have lots of new ideas for physical therapy to support Thomas but it is a lot of work to juggle and expensive (as in not funded) for the weekly individual sessions. A lot of it falls on me as Joe is working long hours, coming home late at night. What I have learned very quickly with cerebral palsy is that Thomas’ muscle tone fluctuates often during the week. Some days he is often very floppy or quite stiff. It can be really difficult on days where he is floppy and I don’t often achieve much with him those days and that’s fine. I go by his lead some days, especially when he’s had an unsettled night which is pretty much why this week is a bit of a downer. 

Thomas has been unsettled every night for the past week. Joe and I have been up a few times each night tending to him. Some nights were more straight forward like a poo nappy but others I have no idea! Thomas’ pediatrician wanted him to have a night of Oximetry readings to check on his heart rate and saturation levels (oxygen) while he sleeps. Because Thomas has been in and out of hospitals several times this year, we became quite confident with using one of these machines. It really made me realise that bringing equipment like this into our home blurs the lines a bit when it comes to wanting to have a healthy distance from anything hospital related within the home environment. We will also be using the machine again while Thomas trials his sleeping system which is meant to arrive tomorrow. The machine records everything for the night and then I’m thinking that we’ll be contacted if there was something not quite right. Thomas’ saturation levels do drop a bit low sometimes but only for a brief period. His heart rate is usually fairly consistent unless he’s having a seizure of course!

The connection probe on top.

In action. Ob’s looking good!

Due to Thomas’ low immunity at the moment his eczema has not been healing as well as it normally would. I’m diligent with the creams and bathing but the eczema just seems to be taking longer to heal. It’s a real pain in the butt because Thomas doesn’t like to be touched much and putting creams on him is quite traumatic for him and of course me for feeling bad for upsetting him. I have resorted to putting calming music on and cuddles part way through the creaming process. Thomas absolutely loves his cuddles. He loves to snuggle his head right into my neck and it’s a lovely feeling knowing that this gives him comfort. 

This week I’ve also made the decision to cut Plunket visits because our last visit from the new nurse went so poorly. She came late, she had no idea about Thomas’ history, and referred to him as a she multiple times even though corrected. We have had at least 11 medical appointments this month alone, not including playgroup so I’ve decided that Plunket can’t offer what we or Thomas needs. I am going to have Thomas get his checks done with his GP who is a really wonderful GP. I tried to ask Plunket for advice but they seem out their depth with offering advice appropriate to Thomas’ needs. I also made a dreaded call to Parent2Parent too. I made contact with them in May looking for support. They couldn’t find anyone in Auckland so did a national match and told me someone (a support parent) would be in contact. No one ever called. 😦 Anyway, I finally got around to calling them with feedback and it turns out that the person who made the match had left the company and the support parent who was intended to ring me had a car crash! The lady I spoke with was very lovely and apologised because someone still should have let me known otherwise. Being a parent of a child with multiple special needs is lonely but more so lonely when Parent2Parent can’t find someone on their national database to support you!!

We received a letter from ACC. Before I even open up these letters I can feel my stomach turning. They are still working through Thomas’ injury claim and are seeking external advice regarding my care while in hospital. I have been through my own medical notes and it’s apparent that my blood pressure checks were not as closely monitored as they should have been. My blood pressure got ridiculously high while in hospital hence the emergency c-section but it’ll be up to the external parties investigating this as to whether or not my care was appropriate and satisfactory. His claim has been open since birth, nearly 9 months! I think there’s a bit more waiting to be had.

I’ll end on a positive note because despite the challenges, there are some lovely moments – a lovely colleague from Joe’s work gifted us some Christmas lights which we have used to ‘kit out’ Thomas crib. The idea is to put the lights on for a little while for him while he is in a playful mood. In the last month, Thomas has conveyed a definite awareness of seeing bright lights so this is why the Christmas lights are an ideal so that we can stimulate his vision. 

Oh and here’s a cheeky pic I found on our camera the other day! It’s an older pic from a few months back.

Pokey tongue action.

 

Tinsel and swings!

Thomas has had a fairly busy week. He seems to have lots of energy during the day which explains why I’m really exhausted by the end of the week. It’s really awesome to see Thomas growing in length and weight. He’s up to 3 meals of solids a day now. We are waiting on equipment for a car seat and a buggy that converts into a seating system so that I can feed Thomas easier. His VNT (therapist) visited during the week and was concerned to see how difficult it is for me to feed him holding him because my arm isn’t long enough to support his head which flops backwards and forwards. Hopefully with the seating system, Thomas will have padded support around his head so that he can feed more efficiently. He has already trialed the Tumble Form seating system and did not like it at all. I’m so blown away by how cognitively aware Thomas is. He’s responding to certain cues and learning what he needs to do in response to the cues. Like when I’m feeding him, because he can’t see the food or spoon, I will say “more, more” and touch the spoon to his lip and he will open his mouth and wait for it. It’s so amazing how he is making these connections. Touch and auditory cues are a big thing for Thomas that enable him to feel more confident within an environment. 

Thomas is still waiting on his sleeping system to arrive but in the meantime we have received a star pillow that Thomas lays his head in that supports and encourages his arms/hands to come more mid-line. 

 

Bringing my hands to my middle.

Thomas is returning to Glow Kids for another individual session next week. This therapy is a little bit more intensive but Thomas coped quite well on Tuesday so we are returning again. On Thursday, next week, Thomas will also have his VNT as well as the SLT(Speech Language Therapist) visit together. It will be great to get feedback on his feeding. 

This Friday, Thomas and I set off to BLENNZ Homai Campus for playgroup. He didn’t sleep well the night prior but thought he can always nap at playgroup if he’s too tired. It’s a calm environment where Thomas can sleep in the cot in the dark room. Plus they have scones every Friday for the parents!!!! Yum yum! 

Here are some lovely pics of Thomas having his first ride in a swing. He seemed to really love it. He even cooed and played with the tinsel. He loves tinsel! It is a really ideal item for Thomas to play with. He is able to grab and hold onto it with ease. It is bright and shiny to catch his eye. It makes a soft, gentle sound. I could tell that when the wind blew and the tinsel danced about that Thomas seemed to notice this movement too! 

Hmmmm….

Touching the tinsel.

Grabbing and pulling the tinsel closer.

 

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!