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!