........Wow what a week we have had in the Skillicorn household, project garden is well under way to get things ready for Princess Gracies Birthday Party at the end of the month! So all hours not dedicated to work and sleeping have found us dressed in our scruffs painting fences and garden furniture, trimming hedges, mowing lawns and jet washing anything that doesn't move, which coincidently works wonders on wheelchairs!!! even though Gracie squeeks now whenever in her chair lol (Wheres the WD40 when you need it).
Gracie has had a visit from the lovely man from the wheelchair assessment unit and has been measured up for a brand spanking new wheelchair that will meet her needs alittle better ie; recline slightly for when she is seizing and just after so she can then sleep!!! Yay! Although he was extremely surprised that she wasn't peg fed due to her size!!! I think he was trying to imply that she had a big butt lol .......but it's the one thing she absolutley adores its her food so i guess he is right hehe, so she is getting the next size up chair also.
A trip to A&E was in order last night due to Gracies chronic Uturcaria (started in April) coming home from work and finding your daughter head to toe in hives and her face looking like she has gone 10 rounds in a boxing match is not recommended. Ringing the GP as usual brang no joy and so bag was packed with spare nappies, meds etc and off we went.......well after two and a half ours in A&E, one and a half hours on the paediatric ward, explaining ourselves about her urtucaria, her meds, her seizures, her ability to communicate and the big one CDKL5 to two nurses, one A&E registrar, one paediatric F2 and then finally one paediatric registrar we were given a 5ml dose of a stronger antihistamine and sent home!!!!! Should I say anymore really...... it basically came down to nobody having a clue about CDKL5 how to deal with us and not wanting to be responsible in altering any seizure medications because of little understanding! We have to hold tight and see what the consultant says and ironically after 4 months wait we also have our first dermatology appointment next week to see if they can find out if it is a drug reaction or an allergy. If there is any doubt why I have created this blog then that is a perfect example.........Awareness!!
Well to end on a good not Gracie is meeting up tomorrow with six other CDKL5 angels at Chester zoo our first English big meet up and we carn't wait to meet our friends old and new. We also wish good luck to our American Branch who are also meeting for the 3rd annual walkathon to raise much needed funds into a cure......maybe one day we could all meet up as one big family!!! Hope, Love, Cure!