Saturday, January 28, 2012
This week has been tough. On Wednesday Kaylee upped the ante and went from vomiting yellow with a brown tinge and flecks of a coffee ground like substance through it (stomach juices with semi-digested blood) to vomiting what looked like coffee made from dirty water without a filter in the peculator (lots of semi-digested blood). The good days took me off guard because most days she has been upset and vomiting most of the time. We started her on a new drug last night to help her gut motility - to keep her intestines moving things a long. The docs thought perhaps things were backing up and creating pressure in the intestine against the valve from the stomach causing her to become nauseous and reflux. This does make sense because she does get worse just after I give her meds which puts a larger volume through her tube but at the same time she didn't really seem to worsen when the feed rate was put up so I do not think we have a magical fix - but I am willing to give anything a go at this stage. I read the possible side effects before giving it to her which was kind of horrifying (the words "may become permanent condition" beside a particularly debilitating - but thankfully rare - neurological side effect almost put me off) and gave the drug to her anyway. So much of what we do with Kaylee is choosing the lesser of two evils. And this morning DID NOT wake up to the sound of her vomiting and choking for the first time in I don't know how long. It is too early to throw any parties yet, but I am allowing myself a glimmer of hope.
There is still no word on what date we will have the surgery but we will get the call sometime in the next two or three weeks. I have a love/hate relationship with the surgery. I love the thought of it being done and being able to focus on some of the other issues - I hate the thought of doing it with a passion.
We have had good moments and fun moments too. Friday is cleaning day when we focus on life skills rather than academics. Anna came up to me at about eleven in the morning and said "We forgot to do history! We have to do history." She is quite taken with the tales of British and Scottish Royalty. I'd say it was because of all the crowns and princesses but the fact that "Bloody Mary" is actually one of her favourite royals is a little disturbing and she got far too excited about tales of the Gunpowder Plot and Guy Fawkes being tortured and beheaded. There is a little element of "off with her head" about that girl.
I have put a cupboard in the girls room to keep craft stuff in - a LOCKED cupboard with a condition that if I find craft elements strewn over the floor I will be confiscating Erin's key! So the girls room is a whole lot more usable now. As I type Erin is painting her paper maché ladybugs she started making before Kaylee was born with Christopher as her apprentice and they both seem to be loving it. It is good to have all her craft stuff organised so perhaps now we can get some project completed.
Billy has graduated to the next reader and has exploded academically. I find kid usually have a moment when they "click" and it all starts falling into place. It is great that he has had that moment as he has been DESPERATE to read for about a year now and discontent to just plug away at it slowly with so many of his favourite books waiting to be read.
Andrew is now well and truly walking and his vocab is exploding. We are getting more than just "Dog....woof-woof" now. The opinionated child had decided that he is feeding himself and outright refuses to eat if someone else tries to feed him. Messy for spaghetti, fried rice, sandwiches...pretty much messy all the time at the moment!
Christopher is now painting Erin's aphids for her (the ladybugs needed something to eat). He has gotten Erin to give him "school work" a few times this week, being discontent with the simple letters and numbers stuff I was having him do. He adores his older siblings and wants to join in on this school work caper.
Here's praying that this week Kaylee will be able to start healing from the damage the reflux was doing to her body, that we will get a call with a date for this surgery, that we will continue to have all the good times we've been having and we will find even more along the way.
Have a good week all!