Goodbye NG! Welcome G!

It’s been a month since my last blog update about Thomas and a lot has happened!

Thomas had his first surgery on the 2nd of September. We received the call less than 2 weeks prior and I made a post on Facebook the day before we went in for the Gastrostomy surgery. I thought that maybe it might be cancelled or something. I think I needed that time to get my head around it. I had been waiting for 7 months for that call and I finally got it. I felt nervous, and a little worried because it was actually going to happen. I knew it was the right thing for Thomas but I still felt horrible that he would be scared, confused and in pain.

We had both decided against getting the Nissen Fundoplication procedure as it was never originally recommended by his Pediatrician and his reflux was mangaged well by his medication. He does not have problems with gagging or retching either. The surgeon recommended not to proceed if there were doubts and if the medicine was helping. It is a procedure that can happen later on if we feel he needs it.

http://www.feedingtubeawareness.com/different-types-of-feeding-tubes.html

 

In recovery room, just out of surgery.

 
The surgery went really well. Thomas was discharged the next day in the afternoon. Usually it is about a 3 day stay but Thomas was back to his chirpy self the next day and I had fed him through the G tube and picked it up straight away. Thomas does not cope well when out of routine or his own environment so returning home so early was a great relief. We were so happy to have my mother come to stay for a week to help out. I was really expecting Thomas to have more pronounced dystonic episodes due to the pain but he only had issues following the surgery and that first night. After that, I managed his pain relief and slowly tapered it off.

Mr Chirpy.

Thomas has not been back at therapy yet but he is able to sit in his pram, feeding chair and playing in the sensory room or in bed. We have definitely noticed that he seems a lot happier in general. He is dribbling less too. He is eating the same volume of food topped up through the G tube and maybe a little bit more orally. Thomas has regressed a little with his oral feeding of chunkier foods. He seems to cope fine with soft little bits of pasta or rice but not peas, carrots or corn. These he will sometimes struggle with or will eat less due to tiredness from chewing.

We do not need to check the positioning of the tube like we used to with the NG so that saves time. The site needs to be changed and cleaned everyday. We can still give him his medicines through the tube. The tricky part we are finding is keeping his hands away from the area. Thomas’s range of movement is limited and often repetitive. It is not always controlled either. He has a very strong grip due to his increased muscle tone so we have to keep a watchful eye on his arms and hands. The Safe T Sleep wrap has been an absolute treasure. While he plays in the sensory room he has a smaller blanket around the area. I have recently purchased some G Tube pads from TubieLove. We’re not using them yet while he heals. They are super adorable.

 
It has been a big relief for us all I feel. I can see that Thomas is not as uncomfortable. He seems free. I really think the NG caused him a bit of grief. The plasters were really damaging his cheeks. It has made feeding a bit easier. My big focus now is to get the G Tube healed!

 

Funny boy!

  
 

Lots of updates…

It’s been pretty busy in our household lately. There are so many different focuses at the moment for Thomas.

Everyday is fairly routine but within that day there are lots of different things we need to work on. So many in fact that not everything gets seen to and I feel the pressure often due to this. I know that I cannot achieve everything I set out to achieve everyday but I like to feel that I’d like to try. If you catch me after a bad night with Thomas, those are especially harder days. 

You see, most children develop and achieve certain milestones and move onto something else. With Thomas, I’ve learnt pretty abruptly to leave all those expectations behind. I stopped the plunket visits early on and reading typical child development books because none of that could apply to our situation anymore. I was living with no expectations except to just see how things develop. For the most part of a year, it was extremely tough watching Thomas having seizures, develop dystonia, struggle with feeding, reflux, eczema, and the crying. I’m seen a lot of that so much so that I’m de sensitised to it. I don’t freak out about seizures, unusual spasms or aggressive crying because it has become a norm for us. Don’t get me wrong, seeing all of that does upset me and make me feel powerless to help. But I have learnt that freaking out does not help the situation at the time. It is best to focus on comforting Thomas. 

I get by most days by prioritising what needs to be done and what can wait another day. Like washing, that can definitely wait!

What I try to focus on with Thomas has often been the same for many months because Thomas needs more time to work on certain things. I’ll list those below with how each is going.

• We have been working on using his new cause and effect switches from the Speech Language Therapist. He seems to have clicked onto this idea pretty quickly. He will press it and either listen for it or respond.
• His sensory room that gives him independent playtime. He enjoys this but does not spend much time in it like he used to. He seems to be getting bored being on his back.
• He has his standing frame to practice bearing weight on his legs and hips. Thomas is still a little weary and unsure during this. There is a lot of crying and fussing as he gets used to new things. He does seem to want to push on his legs and lift his head more which is pleasing.
• A big focus is on feeding and keeping a track of how many mls water, formula, and solids and ensuring they are given timely. Thoma has been eating chunkier solids for about a week now which is an amazing development for him. He used to gag on chunkier foods but is now starting to chew a little first before swallowing. His cough reflex is strong so if food gets stuck, he seems to be able to clear it independently.
• Working on cup feeding to encourage more taken from the cup instead of through the tube. He seems to tolerate more when he is thirsty and more alert. Usually he can tolerate anywhere from 20 – 60mls. He prefers water and nothing else. We have tried a few different liquids but he always enjoys the water. So refreshing!
• I try to get Thomas on his tummy often during the day. He is enjoying being off his back and able to get his mouth to his hands easier this way.
• Assisted rolling, side lying, sitting with bearing weight on arms and hands, and bringing hands midline continue to be a therapy focus. Depending on how Thomas is feeling, we can get varying results however in general I believe that Thomas is developing an awareness of what he should be doing and is trying to attempt certain physical maneuvers independently like trying to roll and swing his hips over. His head control is improving. He wants to lift his head and hold it up for longer periods and at times look around the room. He seems to be opening his hands more. His right side in general is tighter, therefore weaker than the left side. 
• Vision therapy such as assisted play with me. We use certain IPad apps, playing with light up toys or bright coloured toys. I have noticed him using his peripherals a lot to try and look out of the left side at people, or things. He is starting to show that he can hold his focus for maybe 2 seconds or follow an item but this fluctuates depending on how alert he is.
• I have posted photos of Thomas on his Facebook page where he is often getting stuck in uncomfortable positions in his cot. To address this we have been using the Safe T Sleep to strap him safely in the middle of the cot. He transitioned straight away with no issues. The only problem now is that we only have 1 because they are not cheap and he’s been out of it for a day or so while it dries from a wash. Bit of a hassle but not the end of the world!
• Thomas is still attending regular twice weekly Conductive Education sessions. These are going really well. He is still receiving individual sessions as these best address his needs. 
• No news on the Gastromy surgery. We are still waiting! Patiently…
• Another focus that I am trying to be consistent with but sometimes let it slip is working on communication with Thomas. Things such as Objects of Reference that are small physical items or words I use repeatedly for certain situations so to help him learn associations and be prepared for certain things. At the moment it is letting him touch a nappy before a nappy change, touching a spoon before eating, or applying gentle pressure to his thighs when he is on his back to let him know he will be picked up or putting my hands under his arms and saying “up, up, up.” This way he knows he’ll be picked up. It seems to me that he is learning to remember these prompts because he will still and wait or when getting up out of a chair he will try to push himself out a little. He is also very cued in to his auditory environment. It’s not that he has super hearing. He’s just very tuned in and knows what certain sounds mean.
• Orally, Thomas continues to chat and babble away. He sometimes says words clear as and other times it is a bit harder to decipher. Words that he will say include hello, more, no more, mum, muma, love you, hello mum, no, and bang. He does not always say words functionally but he sure likes to practice them. Words he uses functionally are love you, mum, hello and more.

Thomas babbling and chatting.

http://youtu.be/ozArPSSh_jE

Thomas using the switch for the first time.

Hope you enjoyed the videos. Any questions, feel free to ask because maybe I left something out?!?!

Today in Auckland it’s raining so best to keep in doors. ☔️ 

Have a lovely day 😀

Life with Thomas

I am thankful to everyone who reads my blog that has offered kind thoughts, love and support. I know that the blog is an important tool for keeping family and friends informed and to connect with people from around the world who are either years ahead in the unique experience of raising a child with complex needs or maybe only recently introduced to it. I am no expert on every child, only my own son.

I really wasn’t sure whether to write about such a sad, and sensitive, and private part of our journey re: the Advance Care Plan post, but I feel it is important to share so to educate and make people aware of all facets of our journey. I wrote the post so to share my feelings on the matter.

Because Thomas has been unwell for the last month or more, and with winter coming up, it would be an appropriate time, the Pediatrician felt, for us to discuss an Advance Care Plan should Thomas’ health deteriorate. 

Currently Thomas is on the mend. He has recently started a new medication to treat his chronic constipation and consequently faecal impaction, with Movicol. He is on a week of increased dosage to flush everything out. He was very blocked up! To the point that the Pediatrician could feel it upon physical examination and when examined, Thomas’ dystonic episodes occurred which now tells us that his dystonia was fuelled by the pain and discomfort of the constipation. We are now on day 2 of 7 of the flush and it is definitely working!!!! Because of this Thomas has really bounced back to himself, mostly, which includes playing in his sensory room more often, sleeping more, eating without dystonic episodes and chattier and smilier. We are so relieved and happy to see him getting back to himself again. I understand now that he must have been in a great deal of pain for quite some time. 

Although Thomas is on the mend, we did have a little scare last night where we spent many hours in ED. All is well now. He had an NG feed and had a little vomit afterwards. He seemed to be choking a little bit. He had laboured breathing and seemed more limp than the usual. I was advised to take his NG tube out because I was not able to aspirate from his tummy and to take him to ED to have a new one put in as well as check his chest for aspirated fluids. He had an X-ray which came back fine. A new, much longer NG tube was put in and Thomas needed to be monitored for an NG feed. He seemed fine, although distressed by the other crying children and poking and prodding which infuriated his dystonia! We think the reason we were not able to aspirate fluid from his tummy, is because the tube must have been slightly dislodged from the vomiting. I was only drawing air out even though he’d just been fed. In theory I should have been able to draw out a little of what he just ate. 

Sorry if this is too much info! It is a bit yicky sounding but it is part of our feeding routine. The reason for drawing a little fluid from the tummy is to always check the NG tube is in the correct place in the tummy. Once fluid is drawn from a syringe from an opening of the tube, you then squirt a little onto a pH testing paper that tells you if it is okay to go ahead and feed or not. The photo where I am holding an end is the end that sits in the tummy. If you have any questions or want to learn more about it please feel free to ask. I am comfortable talking about it. The goal now is to teach other family members who are keen to learn how. 





Downhill, fast.

Things went downhill, and fast. Since my last blog post everything was ticking along quite smoothly. Thomas was enjoying his paddling pool, was getting pretty interactive and his therapy sessions were going really well. He had been having a tough time with 4 top teeth coming through but once they had broken through, he still seemed not quite himself. He began having the odd seizure and seemed more irritable throughout the day. We made contact with his neurologist who then doubled his seizure medication. The seizures seemed to ease off but Thomas did not settle within himself.

Thomas has always had involuntary muscle contractions but they seemed more pronounced and often. His involuntary movements include his neck repeatedly twisting to the right, his jaw clamps shut and his arms and legs stiffen and he sometimes holds his breath for 1-2 seconds during these episodes. He would do this during breastfeeding and it wasn’t that he was going through a biting phase, it was involuntary. He would be latched, suckling away and then, without warning, his body would tighten and yes, his jaw would clamp shut tightly. I persisted for a while through this and every time I breastfed, I was extremely nervous and kept my finger on the ready. In the end, it got to the point where he was not getting a decent feed because he kept clamping so much which led to our first hospital stay for dehydration.

Thomas miraculously took to the bottle that night in hospital so we were discharged the next day due to this. Now I realise that he was desperate and that bottle feeding long term was a difficult, tiring act for Thomas. He only lasted less than two days getting sufficient fluid from a bottle and became irritable again refusing solids, bottle, and cup. I knew we only had one option left. I really didn’t want it and I wasn’t ready either. But we had no choice in the end.

We were then admitted again a week later. This time for dehydration and a ‘plan’ to address the lack of options for getting fluid into Thomas. The plan was to have Thomas get an NG (nasal gastric) tube put in. This was purely for fluids if he refused cup or bottle. We were still feeding him puréed solids and the yummy tasting medicines orally. In order to be discharged from hospital I was required to observe x amount of feeds and be observed for x amount of feeds as well as give x amount of feeds independently with no supervision. Turns out it is quite easy to do. Changing the plaster on his face to hold the tube in place is not easy. The fear of him pulling it out by accident  will never go away. The NG tube is a short term plan until Thomas gets a G Tube which requires surgery. This will no doubt happen within the next 6 months. 

Since this discharge Thomas seems to have got worse. He has been having the odd seizure, and loads of dystonia episodes. For the last few weeks, it has been really rough. He has been crying or screaming most of the day. Hence why I haven’t written in a loonnnnggg time. I have been putting updates on his Facebook page but it has occurred to me that I haven’t on the blog. With all the crying and screaming, Thomas stopped showing interest in his sensory room or play in general, he was waking in the night stiffening and only wanted to be held. We grew desperate waiting to hear back from the Neurologist who is a very busy lady understandably, so, we went to the GP. She was fantastic! She got on the phone straight to the neurologist with the okay to start a new medicine. It is a strong muscle relaxant, Baclofen. He has been on it for over a week now and it does seem that he is having less dystonic episodes. However, he is still crying and screaming in pain. I believe it is constipation, with his low muscle tone, he struggles to move his bowels. He will spend a whole day pushing and nothing comes out. I really feel for him. I know he is in a great deal of discomfort and pain so I am giving him Pamol and Lactulose and lots of fluids. We are seeing his Pediatrician tomorrow to hopefully look at a stronger medicine to treat the chronic constipation.

I really hope that we are able to find out what it is for sure that is causing Thomas so much pain (even though I think I know, it is not confirmed!). I just want my boy to be comfortable and happy again.

Holiday fun

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

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

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

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

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

Feeding plan update

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

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

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

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

Feeding challenges

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

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

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

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

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

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

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.