Happy does it

Since the last post, Thomas was unsettled for about a week or so. It turns out he has another tooth coming through as well as a growth spurt where he ate like mad all day! He was very fussy, not sleeping well, and didn’t want to play! Oh man it was hard work. Of course, he was settled for his carer Sam. For anyone, who isn’t aware, we get a variety of different hours for different forms of respite. The respite has been an amazing help, enabling us to have extra help or time out. Some days, or weeks can be particularly tough. We get through it, but it really does test your limits and I’m not just talking about the sleep deprivation. Sleep deprivation is the rotten cherry atop my melted, curdled sundae. It is just another thing that comes along for the ride, the nail in my tyre, wearing everything down.

Recently, we were visited by the hospital social worker. We were discharged from them, but Thomas’ therapist was worried that things were a bit much and wants me to have a decent break. Somehow she was not aware I am getting time out but the days she visits, Thomas is usually really unsettled. Perhaps, maybe me being in my nana pants didn’t help but I’m sure Thomas doesn’t mind what clothes I wear! Anyway, the social worker came along and she is going to discharge us again. The good news is she’s going to organise the paperwork for us to apply for a mobility parking permit that requires the Peadiatrician to sign off. It will make life easier for us to be able to get Thomas in and out of the car with the parking spots usually being wider as well as closer to whatever it is we visit. Thomas is now 18 months old, and still needs to be carried like a newborn. He does not walk, crawl, sit or have full head control. He needs lots of support while being handled too. I don’t know if he’ll ever be able to do the above milestones but for now, he cannot. So I’ll leave it at that. We often get asked if we think Thomas might walk one day, but I can’t answer that. I don’t know the answer. Ask me what Thomas likes or dislikes. I can answer that or about his conditions. I’m comfortable explaining what they mean. 

Honestly, I only want Thomas to be happy. That’s the number one thing that matters to me. I want him to feel safe, comfortable and happy. When he is happy, I am full of happy too. When he is not happy, well, you know how it goes! 

  

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!