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.

Moon Buggy!

Yeeha! Thomas’ new seating system/buggy arrived today! It’s called a Moon Buggy.

The seat was delivered by the company and Thomas needed to be specifically fitted so that the padded supports were in the ideal positions. His VNT (Neurological therapist) was there to help out with the process. The seat itself can be removed and placed into the seating frame that you can see in the last pic. The seat can also be front or rear facing. I think that Thomas is going to need a bit of time to adjust to the new seating system. It is quite tight/secure in certain places but it needs to be so to support his body’s posture. I think the Moon Buggy is supposed to look like a pram but when I put Thomas in it I didn’t think it looked like a typical pram at all. There are a lot of attachments and mechanisms to remember. Thank goodness it came with an instruction booklet! The guy who fitted it made it look so easy but he was extremely helpful by getting me to give it a go. We had a go at fitting it into the back of my Mazda and it does fit although we did need to remove a wheel!

Thomas has been feeling a bit better these last two days. It has been a rough couple of weeks but it has been nice to stay home in doors away from the yucky weather. It is so lovely to see Thomas smiling and talking again back to his chirpy self.

Even our cat, Mundai, (pronounced Monday!) is enjoying the peace and quiet!