Making a list and checking it twice!

No I know it’s not Christmas but I am a list maker. There is nothing more therapeutic than making a list and watching things being ticked off. It may be a female thing or a teacher thing but whatever it is lists make me happy!

This week there have been many list making sessions. As the BMT gets nearer there seems to be so much to do. I have been rereading the booklet given to us by Paul Veys a few weeks ago and have to say ‘hats off’ to GOSH for an informative document.
I have started many lists based on the contents of it. Questions to ask on our next visit, things to purchase, things to sort out etc etc.

Herbie and Dan and I will need new clothes each day and new pj’s every night. This means some nightwear purchases are imminent! One of Herbie’s lovely aunties has already provided some fabulous Marvel pj’s for Herbie and he has also added a few pairs of Muppet Pj’s to his collection!
We need to take photo’s of the family that have been laminated. We need to organise which toys etc he will take.

One thing I am keen to organise is regular post arriving for Herbie. I am hoping that he will get something daily from friends, school friends and family. I think that will really lift his spirits and I know it will lift mine! Since he became unwell he has had a couple of letters from an unknown source, calling themselves Jack Frost , and these have been so exciting for him that I think he would love to get post every day.
Getting post
Let me know if you want to be part of the post idea.

Not being at home also means lists for those left behind. Grandparents need to know what clubs etc are on which days for the rest of the children and Lily has daily meds and times and amounts need to be listed to make sure they are confident in our absence. The community nurses have helped with making lists of medicines for reorder and also dates for Lily’s immunoglobulin replacement therapy which happens weekly.

There is a long list of pre BMT tests that need completing for Herbie and a few for Rufus.

So what has been happening this week when I have not been writing lists?

We were visited by two producers from the BBC who interviewed us all at home and shot some footage of the kids playing.
Being filmed
The children loved the attention and all totally believed they will be TV stars, I did warn them that we may not even feature!

Herbie got another fever on Saturday morning scuppering plans for a fun packed day. The ear thermometer is still a scary object for me after the months of continuous fevers from November. I fear that once they start they will become like before, barely controllable with calpol and nurofen, so regular that it’s easier to count the hours in a day with a fever than without and a sign that the bacteria is winning. Thankfully the fever on Saturday was controlled with one dose of calpol and didn’t return today so fingers crossed its nothing to worry about.

Herbie has been in fine form the last few days, this is brilliant in so many ways but only goes to make it harder to think of him going into hospital to be made to feel awful. He will need a Hickman Line & the Peg feeding tube in before transplant too so surgery twice … Sigh.

So I finish my entry today on a fundraising note. So many different people have been important in our journey so far that we want to say thank you to. Only this week I have been asked for details of a charity for people to raise money for to help Herbie. Dan, my sister Charlie, my sister in law Lucy and brother in law Joffy are all running 10k for Great Ormond Street in September
JustGiving - Sponsor me now!
Click above to sponsor them, every little helps, or text HERB57 followed by an amount such as £2 to 70070. I will keep you updated on their progress.
We will also be doing things later in the year for The Children’s Hospital in Oxford who have been such a major part in this story and will continue to be post transplant and The Children’s Community Nurse service who have provided care above and beyond the call of duty, made life easier and become our friends
And PIDUK, the charity support people with Primary Immune Deficiencies
Who have been great and last but by no means least
Rays of Sunshine who grant wishes for sick children who called this week to say Herbie will get his wish granted 😃

Please take time to check these links and donate where, when you can.

Off to make a list…

6 thoughts on “Making a list and checking it twice!”

  1. Hello, my name is Tanya, I discovered your blog through Charlie (we went to school together). I know I haven’t commented before, but you and your family and Herbie have often been in my thoughts, and I have been reading along. I have two daughters, Hope who is nearly 6 and Eden who is 3. We would all love to write to Herbie, and be his penpals if that would be OK. Do let me know details of addresses if you would like us to do this, and we are happy to start before he goes into hospital. You go and make your list, I’m off to donate xxx

  2. I have a list & top of it this week is to see you all on Thursday – everything crossed my lovelies xxxxxx
    We want to be involved in the post for herbs love ya Mand etc xxxxxx

  3. Hi, I am a friend of Luce & Joff and have just been reading your blog whilst blinking back the tears. Would be very happy to join in with the post as I am sure I have some funny pics of his aunt & uncle I could send. You all sound incredible and I wish you loads of luck.

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