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.

It’s only Wednesday!

Yip, you read that right. It’s only Wednesday!

So far this week has been a bit (just a bit!) of a downer really. We had a great session on Monday with Conductive Education and we were able to meet and work with two lovely therapists but to be honest it’s all very overwhelming. They have given me two detailed lesson plans of all the therapy work that I am to maintain at home. I think it’s wonderful that we have lots of new ideas for physical therapy to support Thomas but it is a lot of work to juggle and expensive (as in not funded) for the weekly individual sessions. A lot of it falls on me as Joe is working long hours, coming home late at night. What I have learned very quickly with cerebral palsy is that Thomas’ muscle tone fluctuates often during the week. Some days he is often very floppy or quite stiff. It can be really difficult on days where he is floppy and I don’t often achieve much with him those days and that’s fine. I go by his lead some days, especially when he’s had an unsettled night which is pretty much why this week is a bit of a downer. 

Thomas has been unsettled every night for the past week. Joe and I have been up a few times each night tending to him. Some nights were more straight forward like a poo nappy but others I have no idea! Thomas’ pediatrician wanted him to have a night of Oximetry readings to check on his heart rate and saturation levels (oxygen) while he sleeps. Because Thomas has been in and out of hospitals several times this year, we became quite confident with using one of these machines. It really made me realise that bringing equipment like this into our home blurs the lines a bit when it comes to wanting to have a healthy distance from anything hospital related within the home environment. We will also be using the machine again while Thomas trials his sleeping system which is meant to arrive tomorrow. The machine records everything for the night and then I’m thinking that we’ll be contacted if there was something not quite right. Thomas’ saturation levels do drop a bit low sometimes but only for a brief period. His heart rate is usually fairly consistent unless he’s having a seizure of course!

The connection probe on top.

In action. Ob’s looking good!

Due to Thomas’ low immunity at the moment his eczema has not been healing as well as it normally would. I’m diligent with the creams and bathing but the eczema just seems to be taking longer to heal. It’s a real pain in the butt because Thomas doesn’t like to be touched much and putting creams on him is quite traumatic for him and of course me for feeling bad for upsetting him. I have resorted to putting calming music on and cuddles part way through the creaming process. Thomas absolutely loves his cuddles. He loves to snuggle his head right into my neck and it’s a lovely feeling knowing that this gives him comfort. 

This week I’ve also made the decision to cut Plunket visits because our last visit from the new nurse went so poorly. She came late, she had no idea about Thomas’ history, and referred to him as a she multiple times even though corrected. We have had at least 11 medical appointments this month alone, not including playgroup so I’ve decided that Plunket can’t offer what we or Thomas needs. I am going to have Thomas get his checks done with his GP who is a really wonderful GP. I tried to ask Plunket for advice but they seem out their depth with offering advice appropriate to Thomas’ needs. I also made a dreaded call to Parent2Parent too. I made contact with them in May looking for support. They couldn’t find anyone in Auckland so did a national match and told me someone (a support parent) would be in contact. No one ever called. 😦 Anyway, I finally got around to calling them with feedback and it turns out that the person who made the match had left the company and the support parent who was intended to ring me had a car crash! The lady I spoke with was very lovely and apologised because someone still should have let me known otherwise. Being a parent of a child with multiple special needs is lonely but more so lonely when Parent2Parent can’t find someone on their national database to support you!!

We received a letter from ACC. Before I even open up these letters I can feel my stomach turning. They are still working through Thomas’ injury claim and are seeking external advice regarding my care while in hospital. I have been through my own medical notes and it’s apparent that my blood pressure checks were not as closely monitored as they should have been. My blood pressure got ridiculously high while in hospital hence the emergency c-section but it’ll be up to the external parties investigating this as to whether or not my care was appropriate and satisfactory. His claim has been open since birth, nearly 9 months! I think there’s a bit more waiting to be had.

I’ll end on a positive note because despite the challenges, there are some lovely moments – a lovely colleague from Joe’s work gifted us some Christmas lights which we have used to ‘kit out’ Thomas crib. The idea is to put the lights on for a little while for him while he is in a playful mood. In the last month, Thomas has conveyed a definite awareness of seeing bright lights so this is why the Christmas lights are an ideal so that we can stimulate his vision. 

Oh and here’s a cheeky pic I found on our camera the other day! It’s an older pic from a few months back.

Pokey tongue action.