It’s been 8 weeks since Cayla’s Botox injections at PMH. She has since then had about four weeks of serial casting to stretch the muscles in her left leg and foot. Apart from a small pressure sore on her heel she’s done really well and we managed to get about five degrees dorsiflexion. She has got a new pair of AFOs and she picked the same pattern as last year; purple butterflies.
Earlier in the week we had our post-botox appointment at PMH. This is where we meet with a pediatrician and a physio therapist where they will assess the effects of the Botox injections. I had quite a few questions and wanted to talk to them about Cayla’s laryngospasm that happened during her last GA. You can read about that here. We really don’t want to be worried every time she goes under a general anesthetic which is twice a year for her botox injections.. There was a new pediatrician there that I have never met but apparently she was in the room when Cayla had her last botox so she was aware of the issue re laryngospasm. We spoke about it whilst the physio was checking Cayla’s legs and feet. It was a good chat and the pead pretty much said that they are not overly keen on putting Cayla under a general anesthetic as it is a very high risk that it will happen again They are not 100% sure why but think it has got to do with the lack of saliva control. We talked about possibly doing the injections without a GA but we’re not sure Cayla is old enough yet and I don’t want to freak her out either. So our plan of action is a referral which will be sent to the orthopedic clinic for a specialist to access her in regards to a future surgery. This won’t happen in the next year or even two so no dramas but it will be good to get some more information about our options. Until then we have to control her tight leg muscles with stretching, AFOs, serial casting and Electrodress (Molli). We have so far been using the loose electrodes but will try the outfit when we go to Sweden in a few weeks time. I have no clue how it all will work out but definitely happy to give it a go. The Botox injections have so far definitely been a great help and Cayla is walking better than ever. She is putting much more weight on her left leg and have recently been discharged from the Hip Surveillance Clinic at PMH which is great news! We will also inquire about the WalkAid but that will have to wait until we’re back from Sweden. 12 more days and we’re on the plane!!
A few photos from Nathan’s life in the last few weeks; he’s been invested to Cubs Scouts, received an Honors Certificate, and participated in the school’s yearly cross country carnival. Go Nathan! Also big congratulations to my sis Linda who have just graduated from a Swedish gymnasium. This is a secondary school which prepares the student for higher education at a university – well done Linda!