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.