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. 

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.

 

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!

 

 

 

Sensory what?!

So today I’m going to write a post about Thomas’ sensory room.

It is often something that we get asked about, or generally it is, “what is it?” or “what does it do?”. I would definitely ask the same questions because I’d never heard of one until I started looking into CVI and came across it myself. Before we go any further I think it’ll help to have a picture to refer to! The sensory room is provided by BLENNZ.

As you can see, it’s a pretty neat place for Thomas to explore in. In fact, it is HIS place. When he is in his sensory room, it is his time to explore independently. We do not interact with him while he is in there because it is his opportunity to focus on developing his awareness of cause and effect. This means that he can learn that he / objects within the sensory room are responsible for producing certain sounds. The sensory room is especially designed to suit Thomas’ individual learning needs.

Within his sensory room there is a deliberated contrast of specific items on each side. He has a plastic chain vs a cold metal chain. There are bright shiny pom poms (his favourites!), smooth sides vs fake grass. High contrast, bright colours and shiny materials are effective for catching Thomas’ attention. As well as texture/feel, sound is an important aspect. Thomas can listen to himself chatter or the metal clang, the clinking of beads, or the jingling bright balls. Within this space, he can also develop an awareness of object permanence whereby all objects remain the same for a lengthy period of time. Objects are dangled in specific areas so that his knee or foot will purposefully hit certain objects. The idea here is to help him become aware of his body and what it can do.

The benefits – LOADS!

Ever since Thomas began using his sensory room from about 5 months (he’s 7 1/2 months now), I noticed some positive changes immediately. He started to move his head more as though he was scoping out his environment and using purposeful looking. He can turn his head to both sides now. His hands have relaxed and opened up more. They were almost always in tight fists. He generally moves his body a bit more like kicking his legs about. To begin with, Thomas used his sensory room once a day for maybe 5-10 minutes because that is as much as he could cope with. He was especially anxious and frightened by the objects and it took him a good few weeks to adjust and develop confidence. Now, well, he is a very boisterous, playful and confident boy. He will spend 3/4 of an hour or less up to 4 – 5 times a day. He absolutely loves it. I am so thankful that I can see Thomas play and interact with his environment. I was told that I can pop him in there and go about jobs etc but to be honest I’m too distracted watching him!

What can he see?

This is a question we often get asked. I often struggle to answer this question because I really don’t know. At the moment he has pretty low vision but he’s not blind. However, if he is tired or sick he will not use his vision as a primary source at all. Whenever Joe or I are holding Thomas, people often ask if he’s asleep. Quite the opposite! In fact he’s very alert but Thomas will stay very still and put on what I like to call his ‘listening face’ while he tunes into his environment. Often times he will poke his tongue out to taste or maybe feel the room. Sounds a bit odd but it’s super cute! Thomas uses his peripheral visual field a lot as well as looking downwards. This is also why he sometimes looks like he’s asleep. He tricks me all the time! Thomas does not fixate or appear to follow objects just yet but what he can do is quickly glance at something bright or shiny and then he looks away. I think that it is because it is a lot to process all at once. Thomas does look about the room but he’ll always be in a constant motion when doing so.

Here is a quote that sums up what it’s like for a child with CVI using their vision;”When a child with CVI needs to control his head, use his vision, and perform fine motor tasks, the effort can be compared to a neurologically intact adult learning to knit while walking a tightrope.”(Blind Babies Foundation) That’s pretty hard work then!

Check out Thomas’ Facebook page, Minding Thomas, to see a video of him in his sensory room.