This weeks update…

Nana and Gary like many others have been enjoying much more snow than us and Uncle Dan has built the most fantastic Polar Bear sculpture in their garden which I just had to share because Mia, Harvey, Scott and I were so impressed with it.

 

 

Auntie Gemma has been with us this week so on Wednesday we were the Laddies that Lunch, we went to Marks and Spencers!  Mia has had her Cytarabin chemo everyday at home which I have done with the community nurses visiting for support.  She went to nursery on Thursday and Friday and that’s about it really, quiet mainly because it is so cold out so we have just stayed in for most of the week.  Mia has been a bit of a pickle at bedtimes and waking at least once most nights, I thought we had this cracked because she has had a star chart for the last month which helped her to get back into a really good routine.  But no sooner than she had got her reward ( a play hairdryer set !  ) she started fussing again!  It is exhausting and is the one time of the day that I find myself getting really wound up, because I am also tired.  She is a very clever little girl and has a fantastic repertoire of delaying techniques eg.  “we forgot to take my temperature”, “I didn’t have a drink”, “Teddies aren’t lined up straight”, “We didn’t read ….”, “I haven’t kissed Daddy/Harvey”,  “I need a wee” and the list goes on and on and on until I finally say that’s enough which results in lots of tears and not the calm bedtime that we all need!  I think we need another star chart!  I wonder what treat she will choose this time, hair bands and clips maybe (he he he).

We have had a good weekend though and today we went to Amy and Matt’s for the afternoon and had roast beef dinner… it was fantastic.  Harvey and Mia both loved seeing Maisie and Evie and all the children played together brilliantly.

 

 

 

 

 

 

Mia has another Lumbar Puncture on Tuesday and there are still no rooms at CLIC Haven so I think we are going to do the early morning trip on the ferry instead… wish us luck.  She will also have another week of daily Cytarabin chemotherapy given once daily via baby snake at home, then we have to hope that as her neutrophils plummet she doesn’t catch another infection.  Her Heamoglobin is 85 at the moment but has been steadily going down during this intensive treatment if it gets down to 70 she will need a blood transfusion so we will be keeping a close eye on this.

5 Responses to “This weeks update…”

  1. Tracy Says:

    Hi Mia, what a fantastic Polar bear your uncle made and I think that you’ve inherited some of those artistic skills! Tad just about managed a snow man and then knocked it over. Sounds like you have had a lovely week. Love T&Simon and Tadpole

  2. Grandma Says:

    Hello again,

    Hope all goes well on Tuesday with the early ferry trip and everything else. I showed the picture of the polar bear that Uncle Dan made to my friend Andy who is doing some work in my house. He is a master craftsman (cabinet maker) and he said “With the kind of talent to do that with snow, give him a chunk of wood and a chisel and he would be a great carver! ” I think T is right and we know where some of those artistic genes came from. Fabulous job Uncle Dan!
    Love, Grandma.XXXXXXXXXX

  3. Mark Edgson Says:

    Makes our snowman look like a poor job. Lewis is on cytarabin and just had 2nd transfusion, hope your bloods stay good. Be good for mummy at night little madam, hope the trip is ok tomorrow to England LOL.

    Mark Keeleey Lewis and Lia XX

  4. Polly, Mima's Mum Says:

    Hi there
    Just checking in to see if Mia is doing ok. She looks fab in the snowy photos. Thinking of you all loads. With love from snowy Leicestershire, Polly and Mima x

  5. Anne Martin Says:

    Hi Mich

    Hang in there you are doing a great job and she looks the picture of happiness (with a little bit of cheekiness a well), hope the visit to Southampton goes well today will call you tomorrow as I know you will be exhausted by the time you get home this evening.

    We had to dig the car out this morning took us an hour to get out of our road, only got out cos someone towed us out!!! nightmare

    Lots of love
    Mum
    X

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