Tuesday, February 24, 2015

Happy Birthday Zoe!!!!

Can you believe it, Zoe is 8 years old!!!  The day was a memorable one for a few reasons...

 We had a big dumping of snow the night before.  Ailsa had fun "helping" daddy clear the car off so we could go visit Zoe.  Zoe was...

 in the hospital.  Unfortunately Zoe had a rough past couple of months with multiple hospital visits and 9 different courses of antibiotics!  We were managing her most recent illness at home until she started vomiting and having an increase in seizures.  So off to the hospital we went, on a Holiday Monday.  Of course it had to be a Holiday!  Luckily emergency was pretty quiet and since Zoe was very sick, we saw a doctor within minutes and we were transferred up to the inpatient floor within a couple of hours.  Turns out Zoe had bacteria in her blood.  Which is a first for us and pretty scary since it can be really serious.  Six days in to this hospital stay, Zoe had her birthday and so we celebrated in her room.  This was one of the few smiles I saw that day because Zoe was still having a lot of pain, very tired and still was not allowed to eat at this point.  She loved having everyone sing Happy Birthday to her.

 A few close people were able to stop by for the party.  Not pictured here- Alison and Lyn who also came.  Alison actually spent the night before with Zoe so Gavin and I could go home together for a night and have time Saturday morning to get all the birthday stuff ready.  When we came in Saturday morning, Alison looking tired said, "I don't know how you guys do this."  Thankfully, someone had gotten her a coffee and we immediately gave her a well deserved break!

Ailsa was so proud of Zoe, she told everyone, "It's Zoe's birthday!"  She misses Zoe but she did get to spend some time with her over the weekend and Monday after she went to her own appointment at the hospital.  Zoe will need IV antibiotics for another week, so we are trying to figure out if she needs to stay in hospital or if she could transfer to a respite centre that has nurses and is closer to home.  Gavin and I have a trip planned for next week- we are going away for 5 nights to celebrate our 10th wedding anniversary!  The funny thing is that our anniversary is in November but Zoe has been in hospital the past six years in November and it is usually a bad month for her.  So we thought we would book March since she is usually good in March... ah well.  The best laid plans!  We are trying to see if between respite and Grandad we could still go.  If we don't go next week it won't happen any time soon.  The place we are going to had a great discount price for early March so the next discount period would be November....and I don't think we would take that chance.  We'll see.

Zoe is feeling so much better today.  We see more of the giggly, silly girl we know so well.  For a few months now, Zoe had not been her self.  It is a huge relief to see that smile again.  We missed Zoe!  Zoe is back to bossing us around and acting crazy- we love it!

Wednesday, February 11, 2015

Content warning-  okay, so I'm not a fan off undue profanity, so I'll try to keep it to a minimum.  But sometimes it just feels so f****** good.  

So I've been struggling to get Zoe on the bus recently on time (7:50) and it seems like no matter when I get up (usually around 6:00) there's always that last minute diaper to change (even if I've already changed her once. Or twice. Or . . . ) or there's a problem with her feed or whatever.  And our bus driver this year, who seems like a nice enough guy but not on the standard of previous years' drivers) has been a bit shitty about it.  I mean, if you would like to help out maybe, like, lend a hand and help me get her chair  through the fucking snow banks when you see I'm struggling, or grab my damn snow shovel that's lying right there and help clear a path because I haven't managed to get to it in the last four days because I have been too busy to sit down, never mind swing a snow shovel.  And I was late again today, after almost two hour of continuous care and while he didn't say anything (or do anything to help) I just want to say to him "look, I'm doing my fucking best and if you can't see that have your fucking supervisor call me and I'll explain to him that the reason I am late is that I have been up since 6:00 and I've already changed her butt three times, and drawn up her g-tube meds and given her those meds and apply her transdermal med and rubbed that in and given her her oral meds and brushed her teeth and find her formula and measure the formula and heat the formula and run the formula and then put her feed supplies in her bag (shit- forgot to put extra clothes!), and put her pump in her bag (damn, forgot to put in the cord- the battery is a little low), and check and flushed her g-tube, and clean my three years butt (she pooped in the potty- YEA!), and  got her some toys and given her hugs and pack Zoe's lunch, and put the lunch with the chair and find Zoe's glasses and clean Zoe's glasses andnmfind her glasses strap and put that on her glasses and find a glasses case and put that in her bag and write a note to Zoe's teacher about her chronic diarrhoea, and write her school nurse a letter about her chronic diarrhoea and put her communication  book in her bag, and put her iPod in her bag, and the key guards in her bag,  and get Zoe to pick an item for show and share and write a note about that item to her teachers and get Zoe dressed, and then dressed again, and then again, and put all the poopy diapers in the conmpsost container, except the two cloth ones which go in the laundry, and wash my hands for the sixth time, and put on hand lotion, as my fingers are so dry and sore from washing them the whole time, then get her wheelchair ready, and put it outside and get her dressed, and change her butt for the last time, and put her in her chair and strap her in and bump her down the stairs (no lift yet- that's the project for the spring!), and get stuck in a snow bank as the driver watches and struggle on through to  wheel her onto the bus lift and maybe, just maybe I might remember to give Zoe a kiss and tell her I love her (I don't even remember if I did this today, or just loaded her up like cattle) and deal with that feeling of parental guilt and then come inside and reflect upon the things I've forgotten (her cord, clothes, her extra walking boots) and what a shitty ass parent I am and then, just then your supervisors head swill explode and he'll say,  "holy crap, how do you ever manage to even leave the house?" and he'll get around to figuring out how to fix the crappy ass system that means that simply because we live furthest from the school and closer to the bus depot  that Zoe  has to, has to, has to (there is no other possible way- it's simply a law of physics) get picked up first and spend an hour on the bus and not have the extra 25 minutes for her stupid, lazy disorganised dumb ass father to get her out the fucking door on time.  

Now I have to get my other daughter to school- maybe she'll get there by lunch.