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!

Ah-choo, Cough, Splutter, and Spew Ew!

Yip the title sums up the past week with a new, most unpleasant milestone achieved.

Thomas’ first official cold. 9 months old. Not bad really.

I have to say that I fully jinxed it too. I was literally having a conversation with Joe a few days before it all started saying how we are fortunate that Thomas hasn’t had a cold yet considering that he has immuno-suppression in all. Bugger!

I think that the last few posts Thomas hasn’t had a great time with his eczema and constipation so it’s just been an add on with the addition of the cold.

I don’t know what it’s like to have a typical developing, healthy child with a cold but I’m sure it’s not quite the same experience. I’m sure that it’s the same in the sense that it can make any bubba upset (including parents!) and most especially clingy needing lots of comfort like cuddles. Thomas has certainly been wanting more cuddles.

A plain old cold is a dangerous threat for Thomas due to his immuno-suppression. He’s been put on antibiotics as a safety precaution even though he doesn’t have a fever. It’s really scary because if it develops into a fever we have to take him straight to hospital. For the first time ever, Joe and I kept Thomas in our bed so that we could keep a close eye on him. Just for one night. I didn’t sleep. Thomas was twitching in his sleep and kicking me non-stop! Another scary side effect of Thomas being sick is that his tightenings have come back. Thomas had these tightenings when he was having his infantile spasms. They look like exaggerated startle reflexes although Thomas cannot control when they come on and they are frightening to observe. Thomas also gets distressed when they come on. His whole body stiffens while his legs and arms extend outwards. When he stiffens it can be for 1 – 3 seconds and during this time he holds his breath. We were able to see his pediatrician and she was able to observe this. We believe that it is more likely a movement disorder. He has another EEG coming up soon in October to check for infantile spasms. Because Thomas is not feeling so good, his eczema and constipation have flared up and the tightenings have been waking him or stopping him from drifting to sleep. His whole body tone has really fluctuated this week between really floppy to stiff.

As I write the above I am aware of how it may all sound but for me the purpose is in tracking and recording how Thomas is developing along his journey. Some of it good, some of it not so good.

His pediatrician is referring Thomas to a dermatologist just to see if there is anything more we can do for his skin. The skin test showed no food allergies. He has also been referred to have another xray sooner than planned. He is supposed to be having 6 monthly hip/pelvis xrays for subluxation. He isn’t due to have another till next year sometime but the pediatrician is concerned about his right hip. His legs both point one direction and lately they have not been straight. Sometimes his legs do scissor and boy are they tight. Makes for very difficult nappy changes!

Now, something positive!

Thomas is able to hold onto the shakers and sometimes he gets them to his mouth. It is the most amazing thing ever! At Conductive Education, his teacher gave him two shakers to hold. Of course I thought he’d drop them straight away like he normally does. But no! Joe and I looked at each other in utter surprise but also glee. Thomas held onto them for quite some time. So at 9 months, Thomas can hold onto a shaker and sometimes bring it to his mouth. We went and bought some nice bright coloured shakers and I have been getting Thomas to play with them every day. He is now quite content to play with his shakers. For me, the most awesome part of all this is the cognitive development that is happening. It is most magical to see how many steps it takes to achieve something such as this. Such as; Thomas is aware of the shakers being there in his hands, he knows to hold onto them which requires a tight grasp, he knows to move them in a specific direction to his mouth, he knows that his mouth will make contact with the shakers and where his mouth is. It blows my mind! I’m so proud of Thomas. I know that he’s been so determined to independently get something or anything to his mouth for oral stimulation. And of course, some pics of his awesome achievement.

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!

More and more… referrals and medications!

I know that the last post I made was a wee while ago and that the busy-ness was overwhelming. Well, I don’t think it’s necessary for me to say in every post how busy we have been. It’s like that all the time now. I know that we all have our own busy lives to lead and it certainly makes the time fly too. I think that this ‘busy’ world I have been thrown into was not at all the sort of ‘busy’ I had dreamed, hoped, yearned for. I’m mostly accepting of it on a day where Thomas is stable “health wise” and is generally happy for most of the day. I only ever want for Thomas to be happy. I have accepted that we will have days or weeks that are really rough. 

This past week has been rough for Thomas and I. Not only was his sleeping all over the place for reasons for which I’m still unsure of but the week has ended with some new medications and more referrals. 

Thomas skipped his Conductive Education session on Monday because he was really grizzly. On Tuesday, Joe and I both went to the BLENNZ Homai Playgroup together. Although Thomas was a bit off still, he had a good session exploring different objects. He especially loved a medium sized, bright red, fluffy crab that vibrates when touched. He sat there in my lap, kind of semi grasping it (Go Thomas!) and seemed quite content. I will need to hunt down something similar like that. I will post a short clip of him with it shortly on his facebook page! 

Wednesday, Thomas’s VNT came with his new sleeping system to trial and it was immediately evident that the sleeping system was too big for Thomas. It is like a giant bean bag that molds a certain way to support Thomas to lie with correct posture while sleeping. Well, it swallowed him up! The VNT and I both agreed that it wasn’t right and perhaps when he’s bigger he can move into using this kind of sleeping system. This has become a big part of our world for Thomas – equipment. It’s about trialing equipment and finding what’s right for him. I find this process the hardest because there’s never any guarantee that a piece of equipment will work for Thomas and you end up spending a lot of time waiting for it too. We are still waiting for a seating/buggy system and a car seat. The seating/buggy system is the link below. We are really excited to be getting it in apparently less than 3 weeks!!!!! The car seat hasn’t been selected yet. The good news is that we can choose our own from Babyonthemove and once an application has been made, we may be waiting 3 months + Meanwhile Thomas’s current capsule seat is not giving him the support he needs and he is growing too long for it hence why the waiting game can be quite difficult!

http://shuttlediscovery.com/parents

Thomas did not go to BLENNZ on Friday, and instead we visited his GP. His eczema was proving difficult to manage with a really bad all over body mad flare up. He continued to be unsettled all week and I caught him straining to um, you know, make me a present hah! Well, after all that straining, nothing! He hadn’t gone for awhile so this led me to think maybe constipation or his lack of muscle strength to push? (cerebral palsy related) Well, we came back from the doctors on Friday with a plastic bag full of medication that included lactulose, antibiotics (just in case!), a new stronger ointment for the eczema plus some pinetarsol for the bath. So far the lactulose has helped big time. He is suddenly regular again. The ointment has eased his eczema too. The doctor thinks he needed something a bit greasier. She has made a referral for him to have an extensive skin test as well as see an eczema nurse specialist at Waitakere hospital. 

Thomas is also having a referral done to see a dietitian to ensure that he is eating enough because he is a little fella for his corrected and actual age. I believe that this might be due to his prematurity and having cerebral palsy. Thomas does seem to be eating fine with the solids but seeing a dietitian will be a good way to check that he’s getting enough or find ways to add fat into his diet if necessary. Our goal is to try and get him to feed from a bottle so I can have more than a few hours away for a break. This has proved tricky already. We went out and bought a bottle and the 0+ month teat flow was way too fast. We have since tried the Dr Browns as well and he managed to drink 40 mls and refused to have any more. At the time we didn’t know why but his spew about an hour or so later told us maybe his tummy didn’t agree with it.(Thomas very rarely spills) I also learned this week that the SLT can provide us with bottles for free for children like Thomas who struggle with feeding from a bottle. Who knew? His SLT is going to leave a few different brands with us to try out during the week. 

Today Thomas seems a bit chirpier as his skin looks to be clearing up and he is regular again. I knew that something was not right during the week because he wasn’t interested in his sensory room and was crying a lot. Even when held he was really upset. This was really distressing for me because I had been unwell with some viral thing that Joe brought home from work. It made me realise how hard it is when you’re unwell with an unwell bub. It’s not like I can call in sick! On that note, I’m feeling much better.

On the bottle.

As I look at my Thomas’s diary,  I can see that next week will be interesting. Yes, we have appointments everyday next week plus Thomas gets to see his ophthalmologist again. This is just a routine check up but Thomas has only seen the eye doctor once before when he was about 4 months old so it will be interesting to see if there is any developments/changes. 

I also had a very lovely phone call with the Parent2Parent support parent during the week and it was really great to talk to someone who completely understands. She gave me some really great advice so I am thankful for that. 🙂

Thomas playing in his play gym lying on the star pillow.