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

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.

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.

News news news…

Big post sorry! My aim is to make more regular posts so to avoid long posts such as this however I have divided it into different sections.

I’ll start with the not so great news and then aim to finish with something positive. I feel it is important to try my best to look for the positive or really celebrate it when something good happens because oftens times the stress or trauma never really goes away in our lives. Thomas is a blessing and we are so lucky he is alive but the journey has been tough. I often have heard or read that other parents comment that when their child with special needs makes one step forward, often there is something that sets them back two steps. It most especially feels that way when your child has received a new diagnosis or trailing equipment, or new medications etc.

The x ray

Thomas had his x ray of his right hip well over a week ago and we hadn’t heard anything so I assumed it was okay because last time he had his x ray we didn’t hear anything either because it was fine. Not the case this time! We received a letter in the mail on Friday and I’ve needed the week to digest it plus I was particularly busy away at conference and other things came up. The letter we received was for a referral, yes another referral, for orthopedics. Thomas’ right hip is mildy laterally subluxed. This basically means it is mildly, partially moving out of place like a partial dislocation but not completely dislocated. This is quite common for children with cerebral palsy. I just didn’t think it would happen this soon at 10 months of age. The pediatrician also noted that Thomas has profound central hypotonia. Yes, all these medical terms are quite the mouthful for anyone so feel free to open another tab so you can google it just like I had to! There are just so many medical terms us special needs parents wished we never knew of but in fact is very much a part of our everyday language. We are now in limbo in that yucky ‘waiting for the referral appointment’ phase and I don’t like it because each day you grow more weary worrying about what will happen at this appointment? What is the process? Will they poke and prod my poor wee man? I’m also thinking that it is good that we can intervene, hopefully, in time to better support the development of his hips. I say it’s good that we can intervene but it’s not good that any of this is happening in the first place but what else can I make out of it right?! So, for now I am unsure what next for Thomas regarding his hips so it is a ‘wait and see’ thing until we see orthopedics.

Melt downs

Besides his hips, Thomas has been back into his BLENNZ playgroup and CE. Thomas seems to be especially unsettled around other children or adults who make unpredictable loud, or moaning noises. This is unfortunate because it is out of anyone’s control regarding other children and I think that the other children have every right to make whatever noises they can to communicate but for some reason Thomas gets quite upset and has a mini or mega meltdown with tears and everything. Thomas has always been a particularly anxious boy anyway but it’s making me think about how I can support him here. Any ideas are welcome from parents experiencing the same issue! I’m thinking maybe ear muffs because of his sensitivity to sounds. Sounds that Thomas enjoys are gentle and soft. He likes gentle singing, music, voices, his shaker, anything in his sensory room, the crinkling of tinsel or the kissing noises because he loves kisses so much!

Erupting teeth

For a while now we have suspected teething with the drooling and rosy cheeks. Well, Thomas didn’t go to his playgroup because he was sneezing with a bit of a runny nose. I felt his gums (not even sure why at the time?) and felt something sharp. My first thought was, what the hell was that? There’s something in his mouth! Nope, it’s his two bottom teeth erupting. The poor wee man is not coping too well. He’s been waking in the night quite upset and generally upset during the day. Today he seems less grizzly. Here’s hoping his teeth come through quickly. I have heard stories about teeth coming out and then going back in again. No thank you!

Feeding

Thomas had his appointment with the dietitian and SLT and they both decided that Thomas needs more time before moving onto a special cup. They would also like him to work with a thick puree with a consistent consistency i.e. smooth all the way through, no surprise lumps. The idea here being that he can adapt to the smooth texture over time before moving onto the lumpier textures. I am thankful that Thomas can feed orally but it has been really hard that the feeding has not been straightforward and Thomas’ slow weight gain thrown in there too. I am constantly worrying about how much he eats, poos, drinks, and if he’ll get sick and lose weight again and how this affects his growth as well. It is a bit of relief that he is now being tracked by the dietitian. He has moved from 6.6kg to 6.76 kg in a week. The dietitian said this is good but we still need to keep an eye on it. This takes me back to the NICU days when we would scrutinise every gram Thomas put on or lost. I remember getting upset that he only put on 7 grams over two days and downloading an app designed for converting the grams into pounds or kilos! I’m happy to say I deleted it sometime after he came home.

Good news!

Some good news! Thomas continues to remain content in his seating system for feeds which, again, is so amazing to be able to have my hands free to feed him. His head is still dropping forward but not as much as it used to. The PVI conference went fantastically! Thomas was cared for by his respite carer one day and Joe did the other day. It went really well. It was an amazing feeling to be able to be myself for the day. I was able to meet so many lovely, inspiring people. I really enjoyed the key note speakers and learned so much. Lots to think about!

The many funny faces that Thomas makes!

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!

More and more… referrals and medications!

I know that the last post I made was a wee while ago and that the busy-ness was overwhelming. Well, I don’t think it’s necessary for me to say in every post how busy we have been. It’s like that all the time now. I know that we all have our own busy lives to lead and it certainly makes the time fly too. I think that this ‘busy’ world I have been thrown into was not at all the sort of ‘busy’ I had dreamed, hoped, yearned for. I’m mostly accepting of it on a day where Thomas is stable “health wise” and is generally happy for most of the day. I only ever want for Thomas to be happy. I have accepted that we will have days or weeks that are really rough. 

This past week has been rough for Thomas and I. Not only was his sleeping all over the place for reasons for which I’m still unsure of but the week has ended with some new medications and more referrals. 

Thomas skipped his Conductive Education session on Monday because he was really grizzly. On Tuesday, Joe and I both went to the BLENNZ Homai Playgroup together. Although Thomas was a bit off still, he had a good session exploring different objects. He especially loved a medium sized, bright red, fluffy crab that vibrates when touched. He sat there in my lap, kind of semi grasping it (Go Thomas!) and seemed quite content. I will need to hunt down something similar like that. I will post a short clip of him with it shortly on his facebook page! 

Wednesday, Thomas’s VNT came with his new sleeping system to trial and it was immediately evident that the sleeping system was too big for Thomas. It is like a giant bean bag that molds a certain way to support Thomas to lie with correct posture while sleeping. Well, it swallowed him up! The VNT and I both agreed that it wasn’t right and perhaps when he’s bigger he can move into using this kind of sleeping system. This has become a big part of our world for Thomas – equipment. It’s about trialing equipment and finding what’s right for him. I find this process the hardest because there’s never any guarantee that a piece of equipment will work for Thomas and you end up spending a lot of time waiting for it too. We are still waiting for a seating/buggy system and a car seat. The seating/buggy system is the link below. We are really excited to be getting it in apparently less than 3 weeks!!!!! The car seat hasn’t been selected yet. The good news is that we can choose our own from Babyonthemove and once an application has been made, we may be waiting 3 months + Meanwhile Thomas’s current capsule seat is not giving him the support he needs and he is growing too long for it hence why the waiting game can be quite difficult!

http://shuttlediscovery.com/parents

Thomas did not go to BLENNZ on Friday, and instead we visited his GP. His eczema was proving difficult to manage with a really bad all over body mad flare up. He continued to be unsettled all week and I caught him straining to um, you know, make me a present hah! Well, after all that straining, nothing! He hadn’t gone for awhile so this led me to think maybe constipation or his lack of muscle strength to push? (cerebral palsy related) Well, we came back from the doctors on Friday with a plastic bag full of medication that included lactulose, antibiotics (just in case!), a new stronger ointment for the eczema plus some pinetarsol for the bath. So far the lactulose has helped big time. He is suddenly regular again. The ointment has eased his eczema too. The doctor thinks he needed something a bit greasier. She has made a referral for him to have an extensive skin test as well as see an eczema nurse specialist at Waitakere hospital. 

Thomas is also having a referral done to see a dietitian to ensure that he is eating enough because he is a little fella for his corrected and actual age. I believe that this might be due to his prematurity and having cerebral palsy. Thomas does seem to be eating fine with the solids but seeing a dietitian will be a good way to check that he’s getting enough or find ways to add fat into his diet if necessary. Our goal is to try and get him to feed from a bottle so I can have more than a few hours away for a break. This has proved tricky already. We went out and bought a bottle and the 0+ month teat flow was way too fast. We have since tried the Dr Browns as well and he managed to drink 40 mls and refused to have any more. At the time we didn’t know why but his spew about an hour or so later told us maybe his tummy didn’t agree with it.(Thomas very rarely spills) I also learned this week that the SLT can provide us with bottles for free for children like Thomas who struggle with feeding from a bottle. Who knew? His SLT is going to leave a few different brands with us to try out during the week. 

Today Thomas seems a bit chirpier as his skin looks to be clearing up and he is regular again. I knew that something was not right during the week because he wasn’t interested in his sensory room and was crying a lot. Even when held he was really upset. This was really distressing for me because I had been unwell with some viral thing that Joe brought home from work. It made me realise how hard it is when you’re unwell with an unwell bub. It’s not like I can call in sick! On that note, I’m feeling much better.

On the bottle.

As I look at my Thomas’s diary,  I can see that next week will be interesting. Yes, we have appointments everyday next week plus Thomas gets to see his ophthalmologist again. This is just a routine check up but Thomas has only seen the eye doctor once before when he was about 4 months old so it will be interesting to see if there is any developments/changes. 

I also had a very lovely phone call with the Parent2Parent support parent during the week and it was really great to talk to someone who completely understands. She gave me some really great advice so I am thankful for that. 🙂

Thomas playing in his play gym lying on the star pillow.

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!