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! 

  

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!