It’s been a while! 

Sooooo where do I begin, probably where I left off! 

There have been a number of ups and downs since last post….. I will get the downers out the way first! 

Downs! Still no date for surgery,  that’s pretty painless huh?!? On an up note we have been for Reedy pre op and that is valid for 3 months so I guess that’s a fairly good guide. 

So that said we can move onto filling you in on all the ups! 

I cannot remember if I have mentioned much about Reedys drug regime, from start of May he was on 75mgs twice a day of topirimate (Topomax) and started 100 mgs 2xday of Keppra. It was thought that the Topomax was no longer working and the Keppra was worth a try. Since we started Keppra we have been a huge reduction of seizures (yey!) so we started a Topirimate wean. It was not until we started the wean we realised that a main side effect (for reedy) of it was stopping or reducing his ability to learn and he had regressed since January. Soooooo we have been seeing some extraordinary things including Reed learning to clap and kiss again and just this morning he began to stack! 

Stacking is becoming a running joke in our house as every development check that Reed has had he has been assessed on his ability to stack and it feels like there is a preoccupation with ones ability to stack, cups, blocks… 

Anyway tangent aside that is pretty awesome if you ask me?! I particularly like that he is kissing, not the puckered lip kiss but the open mouth slobbery “I love you” kiss! 

So we have also seen that Reedy has started to take direction, it from us but from his sister “come on Reed!” Is a common command from our gorgeous girl and Reedy trots along after her! Proud mummy and daddy! 

So other ups…… 

DLA application has been processed and been awarded, which will help no end, meaning that I do not really need to go back to work for the time being. (Although I miss adult company, so doing some beauty courses to get me out and about earning pennies evenings and weekends – Lavender Beauty on FB if you fancy a treatment). 

Ryan started his new job and is super dad evenings and weekends. 

Great west run entered and training commencing…. Still deliberating which charty to run/ wog for… Suggestions most welcome

Hummmmm scratch head and think what else…………. 

Dunno but when I remember I will write. 

Here are a few of photies that help keep us going!

   
     

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2 thoughts on “It’s been a while! 

  1. Gill Tippins

    Well not sure where to start but I think positive is best. It must be brilliant for all the family to see Reed taking direction clap and best of all kiss you, that must be wonderful. Hooray!
    Glad to hear abut Ryans job, hope all goes well but fitting into new job always difficult but he is such an affable character

    Great West Run are you definitely going to run? If so why do you not run for a charity which supports Reeds health issues, sound best to me and what better motivation to succeed.

    Bumped into an old friend yesterday he reminded me of when we both ran first Exeter Marathon, he finished in about 3.40 but at 6 hours I still had not arrived so he walked from end of course trying to find me. He found me wandering aimlessly in Cowick Street and although tired himself he ran in to end with me forcing me to run. Big kiss Ian, my motivation to finish was two fold, nobody thought I would and my sponsorship was for Cat Protection. So motivation is the name of the game

    If you are sure you will run and run for epilepsy charity I would do an article on you are Reed and why to are running, it might get extra sponsorship. I guess you will know all about Just Giving website, good way to get extra people to sponsor you.

    Let me know by return if you would like this as I am planning Sept October edition now and will carry one Great West Run human interest story. Then email by July 10th info about yourself, age etc, why you are running, charity, training etc

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    Reply
    1. reedysclimb Post author

      Defo going to run… We haven’t had much contact with many charities yet. But have been in hospital quite a few times so probably do something for Bramble ward. Just need to get some information from the ward as to what they might need related to Epilepsy. Will keep you posted, would love you to do a story on us? X x

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      Reply

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