Sophie has finally broken up from pre-school for 6 whole weeks. Come September she will be starting full time school *gulp*.
We had a brief meeting with the head and deputy before they broke up, school that is not them as a couple!
Anywho, they just wanted us to try and figure out what kind of a plan to put in place regarding Sophie's eating. I think they had initially thought we would take her home for lunch but after explaining she needs to be with the other kids, we are all now on the same page. I think they are freaked at the possibility Soph could choke, we don't know if she has motility issues or how narrow her oesophagus is in places. It really is a wait and see issue and we will be exploring this during the first week of school. I am going to be lurking around at the school during lunch time just in case issues arise and then we will meet and decide if Soph needs someone paid to watch her at mealtimes. This would be someone trained to act if she was to choke but not be glued to Soph, kind of lurking to one side, ready to pounce if a sticky were to happen in her food pipe.
It's all what ifs at the moment so I guess we wait and see.
In other news, Soph had her port flush today, not as great as previous attempts and Soph chalked up another oscar winning performance to her credit. Once the needle went in she was fine but prior to that she was very dramatic and using diversion tactics to delay proceedings. Once done she was absolutely fine, I guess this is going to be her 'normal' until she relaxes more. It sure beats sedated Soph though!
She made her lovely CF nurse push her in a car up to the shop while she bought a magazine and then push her all the way back to the exit doors so we could walk to the car. Bless her, above and beyond her job description that's for sure! She asked for a tip, I told Soph to tell her not to eat yellow snow ;)
While there we checked out her sputum sample from the previous clinic. Yeah. I had forgotten to phone up for it but knowing we hadn't had a call, nothing new was lurking.
Well Mr Pseudomonas is still there however, only a small scanty growth which is FANTASTIC. Something is going on and maybe we are slowly able to fight this little sod again. For years Soph has grown moderate amounts of pseudo and since her clear culture, it has only showed in small quantities.
I will be discussing this at the next clinic. I have questions for a change ;)
Question for everyone, what are you told is the correct dose of nebulised Colomycin for someone over the age of two?
a) 1 million units twice daily.
b) 2 million units twice daily.
Can you let me know please it's important.
Finally just before Soph broke up for the holidays, they had bad hair day at school. Sophie wanted her hair in pigtails and red. I decided to grant her wish for one day and bought some of the red hairspray in a tin. Only problem is it says it may stain light coloured hair like Sophs.
We compromised as she is due her FIRST haircut (I will explain nearer the time) in a few weeks so just decided to do the ends of her bunches. If it stained, we could just have it cut off. Sorted!
Heres the pics, the best I could get...
Sophie loved it and so did her friends. Does anyone else think Soph is looking quite porky in the last pic?? It's fabulous!!
Take care all and sorry for the delay. We have been enjoying life as much as we possibly can. Thank you for all of the responses on my previous post, really interesting and helpful to read!