I realize that I have not put anything up on the blog for over a week, my Facebook gets little updates but I realize that does not help here!
First let me say that the” I heart Mom” shirt mentioned in the previous post was a success... so much so that her Daddy might be starting to get jealous. At least now we can rotate and wash her clothes!
Also pertaining to that last post, and way more important than the shirt thing, she pooped. Hooray! Thank you to everyone who responded with ideas of things to try, I received suggestions from 6 different people! I’m not sure how much detail everyone really wants to know about this sort of thing but let’s just say that after 14 days of no movements we were WAY past using psyllium husks. Let me assure you that Charlotte is on heavy dose of a lactulose every day. We started using suppositories daily, and when those didn’t work we stepped it up to micro enemas, when those didn’t work we were forced to pull out the big ones. I will spare you of the more colourful version of that saga and just say that once things finally started moving everything seemed to get a little more under control. It was a very tense couple of days, poor little girl.We feel that we have had a tremendous answer to our prayers. Two weeks ago Charlotte was lying on the couch, unable to move, not eating, and sleeping all day. Her doctors here had been in contact with the palliative care team up in Calgary and they said that she likely only had a few days left. I mentioned last week that she was eating a little more and up a few times a day. Well I am extremely relieved to say that over this past week she has only gotten stronger! She is eating more and up and playing most of the day. She has the occasional nap, maybe every other day- we try to encourage it but some days it’s a fight, she is feeling too good to sleep! We have been able to sneak her steroids back down a little this week; it is still a bigger dose than it was three weeks ago. She is doing so well. She has really amazed us all. I’m not sure what the future has in store for us, we are still taking this journey one day at a time. But we are praying that we will see improvements each day and she will get stronger.
We have been so blessed that Charlotte and our family has such wonderful care. We live in a very generous community and feel very well taken care of. Charlotte has two amazing paediatricians here that are working with her care team up in Calgary. Two weeks ago they had been stopping by our house twice a day to check on her, and it’s not that we don’t like their visits, be we feel very relieved that the frequency of visits has diminished to twice a week now. We also have two incredible nurses taking turns here during the week; it’s nice to be able to just snuggle up with Charlotte while someone else is busy vacuuming or cleaning up in my kitchen! It’s especially nice to have someone else be the bad guy when its suppository or enema time! Although Charlotte thinks that our pastor comes over just to make her pause her movie, we really appreciate that he has been coming by daily to encourage and pray with us all. Many wonderful meals are being dropped off throughout the week, this eases up the grocery shopping, meal planning and preparation time allowing us more snuggle and play time. The girls are also receiving some wonderful little pick-me-ups in the mail, cards, letters and especially stickers are something to look forwards to in the mornings.I love reading your comments, emails and fb messages. I realize that it’s awkward when you don’t know what to say, and that’s ok- most of the time I don’t know what to say either. Old acquaintances that I see at the store ask “how are you?” such a simple thing... but it starts my mind reeling... well, I think, that depends on what you know, do you know about the past year and a half? Have you heard the horrible part? If you have, I can honestly say that (taking everything into account) this week’s been pretty good, an improvement or something... But if you have not heard any of that where do I start? Telling you ’I’m good’ is not very accurate! I size you up and think how much do you really want to know?... I’m sure I don’t get it right as often as I would like. Some people want more when I answer that things are ‘pretty good this week’ they say “really” with raised eyebrows and look like they are waiting for me to tell them the truth. But the answer that I give is sometimes all I can give; otherwise they might have to deal with an emotional Chernobyl. So let me say that it’s REALLY ok if all you write is that you are thinking of us or keeping us in your prayers... it’s just really nice to hear that we have so much support.
We got our Christmas tree up and decorated and the girls have already gotten fully spoiled! Thank you to Alexander’s Quest for an exciting array of craft supplies, books and toys and the fun playmobil toys the girls are enjoying them immensely.
I had more to say tonight... but I just realized that it is 1am and so I will post this as is... maybe check back in a couple of days- I will try to get this edited and finished, or at least a picutre or two added!