Reflecting on the journey so far

We have been free of Amikacin and on the reduced steroid dose for over a week now. It’s been a reflective time in our household. On one hand the sadness of knowing that Herbie and myself are approaching the anniversary of the date when school life stopped in its tracks. Thus leaving a very sad 4 year old unable to continue with his Reception class friends. A boy who embraced his new roles as a primary school pupil, a member of Peach class etc was suddenly left on the other side of the glass looking in as his peers continued on to each milestone without him. He’s missed numerous birthday parties, his first nativity, his first school disco, his first school fair, pantomime trip, sports day and too many other things to list. Memories were made for his friends, photographs taken, experiences gained but Herbie has had a very different year.
It’s been the same for me. Those who have known me a long time know how much I love being a teacher. The last few years have been tough as I wrangle with guilt of being unable to commit to a whole year with my class to be at home with my ill child. I too have missed many of my favourite things about school, about being a teacher, about being part of a team.

This post is not actually about sadness though, it’s about reflection. Despite what we have missed I think all of us are able to look at this from a different perspective now…how close we are getting to having parts of our life back. We are all feeling like the bulk of this behind us.
This time last year we were about to go on a small UK Holiday to make up for the awful summer we had had with Lily being so ill and on daily iv’s. The holiday was an amazingly happy time for us all. We came home refreshed, happy and almost carefree!


We have always liked the simple pleasures in life, no great need for exotic travels, filling days with one adventure after another. For us being together is most important. So that is what we are looking forward to this half term. Yes we have two hospital appointments in that week, yes it’s unfortunate but we are also going to be at home together which we treasure.

Herbie is slowly making progress. I am happy that stopping the Amikacin didn’t cause a reaction and the reduction in Prednisolone is being tolerated too. We were advised that we could stop potassium supplements last week. I chose to wean rather than stop completely. Bloods are taken tomorrow and we shall see what they show. Last week the blood results were good. Things are going as well as can be expected and Herbie is happy.

School is still an issue for him. He so desperately wants to return. He asks on a daily basis how many more days until he can go back! He is working hard with his outreach teachers and this week it was arranged that he could go to school at the local Hub. This means actually going somewhere for school. He still isn’t mixing with others but it’s a change of scenery and opens opportunities for things like cooking and larger art projects.

Announcing his arrival
Announcing his arrival

Our story was in the local paper again. I think that is the last time we will do that. The girls have mixed feelings about it especially. The boys love it though! It was a nice article and made the front page.
I was shocked by the level of interest after the article with numerous calls from local radio stations and women’s magazines. We are not following any of these up though.

This week we had our annual flu vaccination. I am not anti vaccination at all and really don’t want flu as I know it can be dreadful as well as life threatening for certain groups ( namely Herbie and Lily!). This time I was concerned about whether Herbie should have it. I know it’s not a live vaccine but I asked Waseem and various other medical professionals before finally believing it was ok. I didn’t let the children know until we arrived at the surgery what we were doing. Thankfully there were only a few complaints.

A quick thank you to Emma for a lovely parcel for Herb and the gang last week.
She is so kind, a fellow PID sufferer, who herself has been quite unwell recently but always thinking of others. Hope you start feeling better soon Emma x

So as we head into the last few months of 2014 it will be important to protect all of my family but particularly Herbie. Simple pleasures such as a large family gathering for Guy Fawkes require a little preparation to ensure that we can go. Herbie is so excited about the prospect of a family gathering with his cousins, it’s been quite a few months since the last one in March. Fingers crossed that things continue to go well and all of the Taylor Clan stay healthy.

We can now turn our minds to Christmas and the children’s birthdays and hope to replace some of the sadness and disappointments of last year with smiles, happiness and joy. The children hope Elf McJingle will return and Herbie is also thinking of other things returning… He said,” I will even have lots of hair by then! ”
I think he may well do!

Christmas 2013
Christmas 2013

4 thoughts on “Reflecting on the journey so far”

  1. An incredible journey indeed, documented so eloquently! Herbie’s resilience and determination is amazing. Half term of family time sounds lovely. Tom is about to start IVIG for the first time in the next month, the antibiotics and antivirals aren’t enough anymore. We kind of knew it was coming, but hopefully it should make a big difference. Wishing you all a healthy half term. X Kate

  2. Kate I remember when the time came for Herbie to start ivig. I was so disappointed at first but Dan reminded me what protection it provided. I do the subcut at home and it’s pretty easy to slot into a regime xx much love x

  3. Question: Why is Lily seemingly not as ill as Herbie? Is it because her “good” X chromosome mitigates some of the effects? Or did she have to go through all of this too?

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