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.

 

Tinsel and swings!

Thomas has had a fairly busy week. He seems to have lots of energy during the day which explains why I’m really exhausted by the end of the week. It’s really awesome to see Thomas growing in length and weight. He’s up to 3 meals of solids a day now. We are waiting on equipment for a car seat and a buggy that converts into a seating system so that I can feed Thomas easier. His VNT (therapist) visited during the week and was concerned to see how difficult it is for me to feed him holding him because my arm isn’t long enough to support his head which flops backwards and forwards. Hopefully with the seating system, Thomas will have padded support around his head so that he can feed more efficiently. He has already trialed the Tumble Form seating system and did not like it at all. I’m so blown away by how cognitively aware Thomas is. He’s responding to certain cues and learning what he needs to do in response to the cues. Like when I’m feeding him, because he can’t see the food or spoon, I will say “more, more” and touch the spoon to his lip and he will open his mouth and wait for it. It’s so amazing how he is making these connections. Touch and auditory cues are a big thing for Thomas that enable him to feel more confident within an environment. 

Thomas is still waiting on his sleeping system to arrive but in the meantime we have received a star pillow that Thomas lays his head in that supports and encourages his arms/hands to come more mid-line. 

 

Bringing my hands to my middle.

Thomas is returning to Glow Kids for another individual session next week. This therapy is a little bit more intensive but Thomas coped quite well on Tuesday so we are returning again. On Thursday, next week, Thomas will also have his VNT as well as the SLT(Speech Language Therapist) visit together. It will be great to get feedback on his feeding. 

This Friday, Thomas and I set off to BLENNZ Homai Campus for playgroup. He didn’t sleep well the night prior but thought he can always nap at playgroup if he’s too tired. It’s a calm environment where Thomas can sleep in the cot in the dark room. Plus they have scones every Friday for the parents!!!! Yum yum! 

Here are some lovely pics of Thomas having his first ride in a swing. He seemed to really love it. He even cooed and played with the tinsel. He loves tinsel! It is a really ideal item for Thomas to play with. He is able to grab and hold onto it with ease. It is bright and shiny to catch his eye. It makes a soft, gentle sound. I could tell that when the wind blew and the tinsel danced about that Thomas seemed to notice this movement too! 

Hmmmm….

Touching the tinsel.

Grabbing and pulling the tinsel closer.

 

Neurology and more updates…

We had a fairly good visit with Thomas’ Pediatric Neurologist during the week. Joe and I always ensure we go there prepared with questions because the appointment process goes really fast and you otherwise end up leaving annoyed because you forgot to ask something. Usually you also leave the appointment with fresh questions too. We won’t see his neurologist for another 2 months so the emphasis on being prepared is key!

So the good news is that Thomas has not had any worrying signs of infantile spasms but that if they do relapse we will go straight back on to the steroid treatment because Thomas had an initially positive response to this treatment. We will not need to have him re-admitted or require an EEG as they can do a visual clinical diagnosis. Yay! EEG’s are stressful! On that note, Thomas has a follow up EEG coming up to check for the specific hypsarrhythmia wave pattern indicative of Infantile Spasms. Boo hoo!

Thomas is still awaiting results as to whether he has another rare seizure disorder that the neurologist wants to check on. His blood results show that he is genetically fine which is a big relief for Joe and I. This also tells us that Thomas’ brain bleed was not of congenital origin. 

We were able to see a more up to date MRI scan of Thomas’ brain. It showed us that his brain injury was moderate to severe and that he will be globally delayed in all areas. I hope to get copies of this that I can share but in general terms there is a whole lot of white matter missing and replaced with fluid. The white matter that is missing is all on the outside surrounding the brain but also within the inner part of the brain where his ventricles are located which has left him with enlarged ventricles with bleeding still resolving. I’ve posted a pic below so that if you can imagine that part that is missing is exactly where the visual cortex is as well as part of his motor cortex. This explains why Thomas has a severe visual impairment as well as cerebral palsy. The neurologist said that when Thomas is about 2 years old we may have a better idea of what his capabilities will be in terms of development. For now, we will just wait and see how he develops. 

 

After his appointment he had quite a bit of blood taken for more tests. As you can imagine, Thomas was very traumatised by this experience. For any young bubba or child this is distressing I’m sure but double distressing for Thomas because of his lack of vision and an inability to reason with what is being done to him. I gave him loads of cuddles and he settled once we were out of there. Unfortunately, he had an unsettled night and we stayed home the next day which meant no BLENNZ playgroup for the day. So sad to miss these sessions as they are very awesome for Thomas and I. Thomas was still quite grizzly for the most part of Friday so I know it was the right decision to keep him home for the day. By Saturday, Thomas was feeling much better.

Here are some fabulous pics of Thomas continuing to make great progress with his strength during tummy time. In the most recent weeks, he is starting to show an awareness of his environment such as toys or people. He is trying really hard to get anything into his mouth and has learned ways to do this by shuffling around on his back. He does not have the strength yet to get his hands to his mouth or bring an item to his mouth so we help him out here as much as we can. 

Thomas patting the cat.

A very strong man!

Very smart how he moved sideways! He loves the keys on the side.

Thomas loves to suck on the cats ears!

 

 

 

The Receptionist

Enter…. ME!

Once upon a time when I was a teacher, like yesterday, I kept a teacher planner and a diary, the A4 sized diary of course. It was used to record ongoing ‘to do’ lists that never, EVER were completed because as soon as one job was ticked off, another 3 were then added in its place. So along with the ‘to do’ lists came the dates and times of many meetings and deadlines. If you ever asked me what the term dates were I didn’t need to refer to my diary. Nope. This I knew oh so very well, no need to double check that one.

Well, silly me for thinking that when I finished working I wouldn’t need a diary anymore because I’d be at home busy with my baby and going to coffee group meets, maybe the occasional doctor visit for immunisations perhaps. It would be a waste of money to buy a diary to record all of that. That would be silly. I was excited to not think about keeping a diary for the first time in a LONG time. Don’t get me wrong, diaries are awesome fun for being super, super organised if there’s a need to track important dates like maybe birthdays or trips. But I’m not buying a diary just for that reason alone.

Fast track ahead with me, my boy Thomas, and the Warehouse frantically seeking out a 2014 diary in March. By this time there wasn’t much left in the way of choice so I grabbed the cheapest, smallest diary I could find. Only 2 left and less than $2. Bargain! Why in the heck am I buying a diary? Short answer: To keep a track of Thomas’ medical appointments. I’m his mum, but I’m also a very talented receptionist. Thomas keeps up a very demanding schedule of appointments with a whole range of specialists and groups he attends. It seems, too, that as he grows older, bigger, and longer (66.5 cms!) so too, does his appointment schedule minus the older bit.

My inspiration for this post came from a plunket visit today. Our new plunket nurse arrived more than ½ hour late (with no apology!) and had no idea about Thomas’ background even though she had the notes with her. Go figure! After a quick run down of Thomas’ history she was left speechless and basically said “your whole life revolves around him” and followed by “how are you coping with all of this?” Yes, she’s right. I keep a diary which I could see she was eyeing up on the coffee table. I keep a diary because Thomas has, on average, more than several medical appointments each month since March. This does not include 5 hospitalisations either. This is very much a part of Thomas’ world at the moment.

As the plunket nurse was late, the next appointment turned up and on time. I was left with a threatened brain implosion after going through individualised funding for Thomas’ respite. This is a new journey that will unfold as soon as we employ someone to help out with Thomas. Today, I also booked in an assessment for conductive education, took a lovely call from his vision therapist to book an appointment, rang the pharmacy for more meds, and left a message chasing up another therapist for equipment. It is a whole lot of busy but it is the sort of busy that ensures that Thomas is receiving every bit of special attention for his individual needs.

How do I cope? I get to cuddle, kiss and look at this beautiful boy all day.

Thomas says Hello!

Something Beautiful

Something beautiful happened on Saturday night. I saw the sign of acknowledgement in my sons eyes when he looked into mine. Using his peripheral, he was able to lock eyes with mine. Such a magical moment that I have been waiting for since forever. That moment that any parent longs for, to have your child acknowledge you through eye contact. I will hold onto that moment forever. I hope that I can share more of those moments with my son.

He, I believe, was just as hypnotised as I was. Once he knew what had happened he moved his head so that his eyes were half an inch from my face so that he could take it all in. Every now and then he would throw his head back with the biggest smile, so big it covered his face. He was extremely content being close and with me as his target, he went about trying to give me kisses. Of course I was covered in his lovely sloppy dribble kisses but so worth it.

I know that my son knows who I am. I am forever thankful for this. I have always dreamed that my son could look me in the eyes and know me. Now I can say this dream is a beautiful reality. I hope that I can have more moments like this but if I don’t that’s okay with me. I know that I enjoyed every second of it very much in the moment. I will never forget that.