Moving on...

What a beautiful day this was for Maia. With so few highlights for her this year, I was so proud to see her looking so sweet and behaving so well (she was sleeping for an hour and a half before the ceremony and they had to wake her up!).

Her teacher said a beautiful and touching speech - Maia is the first to graduate from this new class at her school. She was given an award and a beautiful gold charm from her teacher. She even had a corsage. What special touches they went through to make this a special ceremony for her. It was very emotional for me.

She is off to "high school" next year. Love you Maia-pie.

behind again

yes, well, thanks for asking :) It's been busy, and I am out of town as I write this, at a hotel. Maia is at home with her grandmother, who has moved in with us, and saving our butts big time (sorry, but it's true!). Maia's been sick again recently - another flu - and if my mom would not have been there, I would likely have cancelled my trip south to my university convocation, which took place yesterday. My mom was supposed to come with us, but stayed behind to watch Maia, who is still as of today not quite back to herself, and now my mom is sick. Had we left her with my very capable worker and her kids, they would all be sick right now too. Monday night I slept on the couch on puke alert and was up with her most of the night. She also had the runs and a fever and it's really, really pathetic to watch her when she is ill. That being said, at least she is quiet. :)

Then, the night before we left, Tuesday - Jaida started throwing up at 1 in the morning. Evil mom that I am, I decided to not leave her behind with grandma - but brought her with us, armed with gravol and tylenol - she stopped throwing up Wednesday a.m., but still has a fever tonight - Friday. It has been on and off since we left - she'll seem fine and then it comes back several hours later. Nasty virus! We'll be home tomorrow. (see my Twoworlds blog in a few days for pics from my grad!) My poor mom is sick now and Maia has apparently been giving her a rough time with her behaviours. Her "second head" appeared today my mom said, after a 2 day sleeping beauty coma. Sigh - we've been seeing a few more breakthroughs recently - but I can't imagine upping her meds - the negatives and positives need to balance - and she is so lethargic and sleepy now - sleeping most days at school - she is sooooo puffy a lot of the time (PMS) and just an unhappy camper.

Her graduation ceremony is coming up in another week or so - so check back, because I'll post pics. She is leaving her current school as she has aged out and will be going to another school for the developmentally disabled where she can then stay until she is 21.

Sorry for the long stretch in writing - it seems like life has been going full speed ahead. I am grateful for the few days away from reality- to be away from home and Maia. Lots of meetings and phone calls to deal with about her it seems - and it gets to me after a while. We have another case conference on Monday - to talk about her future needs, placement, etc. I'm lucky to have a great case manager directing everything for us.

I also heard the day before I left, that we lost her benefits - Assistance for Children with Severe Disabilities - which covered her prescriptions, 25% parental portion of her AFO's, back brace, wheelchair - all of which she will be needing new ones again of soon - the top up diaper grant portion etc. We make too much money apparently. Funny, it seems that I submitted over $18,000 in expenses last year - (we didnt' get any funding for her van lift - not to mention having to get the van to begin with - the three trips to Toronto - misc. expenses, diaper costs, etc. - that does not include lost wages for trips away and multiple missed says of work for her illnesses. I pretty much feel like my entire part-time salary last year went mostly to her. These types of benefits are income based, not expense based, so - even if I work for nothing, it doesn't matter. It made me cry. So, while we won't have to worry about a new van and lift next year, I can expect we'll still have significant expenses because of her, and neither my husband nor I have extra benefits (thank goodness at least we are Canadian and her medical expenses are covered - just not all the extras!!)

Sigh. I should have waited to write this stuff out until I got home - one more night without thinking about "stuff" - but then again, it's quiet here and I have time to write....

I would like to end on a postive note and say that despite having my arms covered in liquid poo from Maia, cleaning her vomit and having Jaida vomit directly into my hands - I made it to my convocation, with no ill effects and have yet to see any signs of illness myself. Either my immune system is damn good lately or the universe is waiting to bestow it's wondrous virus capabilities on me when I have to go back to work on Monday.

Gotta keep smiling :)

Maia's great grandmother...

...passed away on Friday night at the age of 94. She was the coolest person ever and Maia had a soft sort for Nan. Nan would always play peek a boo with her and whenever Nan would come by, Maia would instantly put her arms over her eyes to initiate the game with her. Nanny was bright and with it up to the very last few days, and I only hope I live as long a life as she did.

So guess what happens....

when Maia throws up her evening and morning doses of seroquel?

Feel free to go back in the blog for the nastiest screaming video you can find and view it. I can't be bothered to post what is happening now because I am trying to maintain what little sanity I have left today by pretending I am in another time zone.

I slept on the couch last night and didn't sleep a wink. I am exhausted and can't think straight and had a good cry this morning because I was feeling sorry for myself. Isn't that selfish?

Maia is still throwing up - or was as of mid-morning today. She is obviously not going to the respite house tonight. I am going to hope that she is better by morning and my life can go back to normal, and she can get at least one night away from me.

By 11 a.m., she started getting really unfocused again, wanting food but rejecting it, asking to come out but then kicking me, and now we are in the throes of a really good psychotic fit. Lots of screaming, crying, and kicking.

I am going to give her a dose of seroquel once she looks like she hasn't thrown up for a little bit longer. Whether she will eat for me is another thing.

My case manager is still working on options for us. I am so tired. I am tired of the screaming. She just went through this "throwing up" 2 weeks ago. Part of me thinks it's a side effect of the medication as opposed to the flu. I mean, she throws up easily as it is. I'm always paranoid she is going to choke on her vomit and so I never sleep when she is like this. I had discussed with Marty last night maybe it was the medicine and maybe we should trim her dose a bit. Seeing what happens when she goes even 12 hours without heavy medication makes me think not.

I hope this doesn't last too long. This really, really, really sucks.

Today...

I guess I'm not doing to well at posting anymore - sorry readers.

Maia's been throwing up today. She threw up yesterday too. Two weeks ago, she was throwing up.

Well, she's not been screaming much, so that's good.

I don't know if the medication is what is doing it or if it is something else.

Last week was my first week attempting to go back to work at the office instead of nights (since I finally finished University and my mornings are free now, yeah!)

-Jaida got pneumonia and so I missed 3 of the 5 days. Today was the start of a new week, I felt hopeful! Maia is also scheduled to leave for school tomorrow and not come home until Thursday after school - trying out a new respite plan. If she is sick tomorrow too and can't go I'll feel really defeated :(

Thursday we have her IPRC meeting, as she is transitioning to a special needs school - she was there about 4 years ago - something happened there that wasn't good (can't say more) but she was moved and so now she is going back. All new people but I can't help but feel apprehensive about it. This is the school she will stay at until she is 21. I LOVE where she is now, but she has aged out.

Anyways, tomorrow I'll see if I actually get to work and she gets to that respite home. We are eager for a couple of days break. My poor baby...

A trek to Toronto

Well, I've been a tad busy these past two weeks, sorry for the delay in update!

We went to Toronto this past week for a couple of medical appointments for Maia - to see the ENT and Cardiologist.

Appt#1 - ENT - We held her down and took an enormous amount of wax out of both ears - eeeww! One is still perforated - the other is not, but has some fluid build up. The ENT thinks it is maybe not a good idea to keep putting ear tubes in - so maybe we are done with that whole scene (she's had like 8 sets of tubes I think....)

Appt: #2 - an EEG and visit to cardiology - we are officially discharged from cardiology forever! Yeah! We were told to consider her heart healthy and normal - now there are two words you don't often see in conjunction with Maia very often (ahem) we'll take it!

Maia was pretty good for most of the trip, except for a few grumbles and one massive blow out about 2 hours from home (it's an 8 hour drive there and back). She spent about 40 minutes trying to attack Jaida from the back seat - and we had to pull over on the highway 3 times. It was NOT pretty let me tell you. At home, we can close her bedroom door - in the van there is NO escape. Overall, what a difference in her behaviour though - we actually were able to walk through the streets of Toronto and to the Disney store and back without incident - something that hasn't happened in a long, long while...

Enjoying the Bruno turn seat btw - awesome!

While at HSC we got to meet another mom and daughter who I am friends with on line - for the first time - how cool! Very brief, but I look forward to seeing them at our picnic this summer.

The day after we got back, myself and ten other moms were treated to an amazing Pamper Me day at our local Children's Treatment Centre. They transformed the place into a spa - and we were picked up in a white stretch limo at 8 a.m., and had the works - massages, pedicures, hair, make up, meals, gifts, it was unbelievable. Made me cry! Thank you so much to everyone...it was truly amazing.

Until next time...

Annual Cleft Clinic

I love that the specialists come from Toronto so we don't have to travel for it.
I think they are awesome.
I LOVED the new van lift chair because I can actually get her home on my own.
I HATE being left on my own with her anyways.
She gives me anxiety.
I always question when they tell me that some kids like Maia actually tolerate braces.
I tell them there is no way.
Maia proves it by starting to freak out and I tell them how much Seroquel she needs to be on.
I am happy to report her teeth are really clean, no loose fillings, and they are happy with how much her jaw has grown (for those new, she was born with Pierre Robin Sequence as well as a full cleft palate).
I HATE holding her down for doctors to examine inside her mouth.
Her lips are always so dry - northern winter and drooling don't mix. She was bleeding after.
Why do I always feel like bawling when I am done taking her anywhere in public?
Oh yeah, because she is miserable and throws her toys and grumbles too much.
Right, I almost forgot.
Whew.

Next week we take her to Toronto - an ENT appt in the a.m. and cardio in the afternoon. She's getting an echo I think. Wonder how that will go over.
Maybe she'll be thrilled to be there :)

Oh, I bought her a awesome new spring jacket.
It's size 16 girls.
I just tried it on and am gleeful because it fits and I think I'll borrow it sometimes.
Always wanted a daughter I could share clothes with.