Friday, October 28, 2011

I've been casually bringing up the topic of moving to Calgary with out health care providers. Our infant development people, especially, have been very positive about the programs available in Alberta for Ellie. One said that the programs here pale in comparison to what is available over there.

The only person that's been not-so-positive about the city itself, is someone who likes to party, and whose parents have a fancy boat, and chalet up at Whistler. Hardly the same as what we have, or what we would leave behind.

Here is my dream house.
If Jason had the job in Calgary today, we would list our house, and try to buy this one before someone else does. But, there will be others like it. I like the unfinished basement, my parents have been talking about investing in property out that way, and have talked about finishing a basement, to their specs, so they would have a place to stay when they come visit us.
The kitchen is so nice, and perfect for Ellie, the pantry is behind a door, which can easily be locked.

It's brand new, has three bedrooms, 2.5 bathrooms, a separate garage. It's beautiful.

The thing Jason and I both like most, is that this house costs less, taxes in, than what our place in Ladner is worth! For a brand new home, in a new fast growing community, comprised mainly of young families with children under the age of 6!

Monday, October 24, 2011

Alberta has the Family Support for Children with Disabilities program, which is pretty remarkable.

Information and Referral Support

Information and referral supports are available to all families who have a child with a disability, regardless of the type of disability or eligibility for the FSCD program, including:
  • Information about federal and provincial government programs and services, community supports and local resources
  • Assistance obtaining and coordinating supports and services
  • Referral to community support and advocacy resources, such as parent support groups, disability associations or advocacy organizations
  • Information and support to empower parents to advocate for their child

Family Support Services

Family support services may be provided based on the family’s needs and circumstances, including:

  • Individual and family counseling
  • Assistance with the cost of clothing and footwear related to the child’s disability
  • Assistance with the cost of attending medical appointment or when the child is in hospital, such as parking, mileage, meals and accommodation
  • Respite services

Child-Focused Services

Child-focused services are provided when a child’s disability significantly limits his or her ability to function in normal daily living activities, and are based on the child’s and family’s individually assessed needs. Child-focused services include:

  • Respite services
  • Child care support
  • Aide supports
  • Health-related supports, such as assistance with some of the extraordinary cost of prescription drugs, formulas and diets
  • Specialized services, such as support and consultation from occupational or physical therapists, speech language pathologists or psychologists
  • Out-of-home living arrangements, if necessary, to support a child when all other alternatives for in-home supports have been explored.
There's also a whole plan for teachers who have PWS students! It's amazing!!
We are slowly making progress getting Ellie started on GH. Our insurance covered the first three months of therapy, so hopefully we get started when we come back from London in November!

She's doing well with physio, and is keeping up to her own little curve.

Jason and I have been talking a lot about our future. We love our neighbourhood, and we like our place, but we don't like the fact that we don't have a yard, and our immediate neighbours leave much to be desired. We know we want to buy a house. We can't afford one anywhere locally where we actually want to live. Some of the areas we like are too far to commute. Also, with all the appointments we have with Ellie in the city, it's almost impossible to move further out than we already are.

So, we're contemplating a move. A very big move. We are thinking about moving to Calgary in the new year. I have friends in Calgary, Jason can transfer fairly easily to the CPS, the pay there is better than here, there are less taxes, and houses are still reasonable. We can afford a good house, with a nice yard in a great neighbourhood, close to good schools. There are more services available for Ellie. I know someone out that way whose son has PWS, and she said he gets very good care. The waitlists are shorter, and there are more social services for kids with disabilities.

I don't mind winter, actually I love the sunshine, and can deal quite well with the cold. I would miss the green of Vancouver, and Jay's family and our friends. Missing friends would be the hardest part. But, when it comes down to it, the most important thing for us is to be able to give our kids the best opportunities we can provide. Over there, chances are very good I won't have to work out of necessity. If we leave, though, I doubt we would be able to move back, unless the market crumbles.

Part of me is terrified at the thought of leaving, the other part of me is absolutely excited at the prospect of starting anew, and for us to forge the life we want in a place that we like.

Tuesday, October 18, 2011

We are still waiting on the results of Ellie's sleep study. We might, maybe, be making progress on getting the GH covered. The next plan of action is to see if the hospital pharmacy can process the GH on our drug plan card, without actually going through the paperwork. If that works, 80% will be covered, and then the remaining 20% might get covered through Medicum. I am trying to be hopeful that it will work, only time will tell.

We met with our IDP consultant today, and Ellie has been making great progress! I'm excited about that.

After our appointment, I took E to be weighed and measured, since she is now 4 months adjusted. She is 4226grams, or 9lbs5oz, and 52.5cm, or 20.75". She's growing, slowly, but growing!

Thursday, October 13, 2011

I'm making changes to the way my blog layout. I don't exactly have bountiful amounts of spare time, so hopefully I can get this all done before people get all confused with me! Sorry for always changing things. If I get it done right, maybe I'll stick with it a while ;)

Sleep Study Photos

Waiting for the Tech in the main Lobby

Changed, Fed and ready to get started!

Chest straps to monitor breathing movements

Pulse Ox monitors on both feet. We've agreed to participate in a research project on a new type of Pulse Ox.
Not entirely thrilled with having things stuck all over her head.

All taped up and ready for bed. Poor nugget, she isn't happy AT ALL!! And, she keeps pulling at the thing by her nose. Thank goodness we can leave at 2am. I'm not even going to bother sleeping. It's only 5 hours away!
Ellie sleeps in my bed, beside me. There have been times, where for no reason I can explain, I've rolled over to her, shaken her lightly, and gone back to sleep. I have never really been conscious of it, but here with the sleep study going on, and been going on for less than an hour, she has already had two significant apnea episodes. TWO.

This scares me. A lot.

I know that for her age, and with PWS, apnea is common. I just naively thought she didn't have it. It's hard realizing I was wrong about that.

Wednesday, October 12, 2011

With every day that passes, she gets more beautiful. I love this girl more than I thought it was ever possible to love another human being. She is everything.

Tuesday, October 11, 2011

Some days, I wish Ellie would stay little forever. I wish we weren't counting down the days until the Hunger strikes. I wish that she could just be like the other kids. She's started holding up her head, which is awesome, but at the same time, my heart breaks a little to see her growing up. I can't stop it, it's going to happen whether I want it to or not, but I wish I could slow it down.
We had family over to dinner last night, to celebrate Thanksgiving. I made turkey, stuffing, potatoes, yams, brussel sprouts... and it was all perfect. And, as thankful and grateful as I am for everything I have in my life, I wished I could freeze the moment, so we could relive it time and again, when Ellie is in that next phase, and evenings sitting around a table of food cease to exist in our lives.
I know we will make it work, and everyone will band together for our girl, but I sure wish we didn't have to.
I want a cure. Yesterday.
Yay! Yay! Yay!

Today has been a day full of great things! First, the respiratory clinic called to say they had a cancellation, and we get to go for Ellie's sleep study this THURSDAY!! Nevermind waiting until December! I was so happy I could have cried when she told me that we could come in this week.

Then, I got an email from Dr. Miller, who gave me a new "diet" for Ellie, which is awesome, she's the most amazing person.

Then, I got a call from the IDP physiotherapist, saying he got a cancellation on his very last day of work before his vacation, that lasts until December. YES!!

Friday, October 7, 2011

We just had Ellie's sleep study consult which was long, and really didn't accomplish anything. They asked all the same questions they always ask, and told us what they do at the study. They want us to wait until the middle of November, right when I am away, to do the test. Six weeks!!! I don't even know who to bug about getting in before we leave. But... we haven't heard anything from Medicum about coverage, and I still want her to be retested for GH levels. She is only 4 months adjusted, we still have a bit of time. Do I cause a stink to get the date moved up, at the risk of not having coverage in time? Hmmm... so much waiting.
Mandy got Sophie in in two weeks. I think I need to talk to her about how that worked. I want the results in to Dr. Stewart, and all the Medicum crap sorted before our next appointment. Before December 6th.

Monday, October 3, 2011

Cake Pops

I've been on a bit of a cake pop kick, of late, and I'm getting better at them!!

My first attempt at icing went horribly wrong! But, they tasted amazing. The trouble? I couldn't get those melties to the right consistency.

Practicing for Jakob's birthday... I ran out of proper sticks. Toothpicks were all I had, so they had to be stick side up!

White with sprinkles, pink piggies, green martians

Pink with Chocolate sprinkles

 Those were my first attempt, and they tasted FANTASTICALLY, but they weren't half as pretty as I wanted them to be. I decided to poke fun at my hubby, and did another round, this time they worked just as well as I imagined!
Two slab cakes, icing, sticks, and floral foam to hold the pops as they dried

Making Spider Eyes

Making Cat Eyes

Spider legs

Mentos, dyed with blue food colour, for hats

Chocolate cake balls, mixed with icing, then frozen.

Dipped once in pink icing, attached half a mini-mashmallow to the snout, two triangle candies for ears, dipped again in pink icing, then added the mentos, a star and the licorice brim :)

Ready for Duty


Hairy Spider!

Saturday, October 1, 2011

i am struggling today. Yesterday was awful, Jakob got into our medicine cabinet while I was pumping, and feeding Ellie, and ate a bunch of Tylenol. That landed us in the ER, for nine hours. He's okay. Being back in the hospital, with a child on monitors, and needles, and the smells, and everything, messed with my head. I hate hospitals. I love hospitals. I never want to spend another day in one, but I know I can look forward to many, many, many visits with Ellie, and hopefully no more with Jakob.

Sigh. Today, I took both kids to the Great Expectations baby fair in town. I needed to get out of the house. So many people were taken with Ellie, and fawned over her, and told me how lovely she is. What I wasn't prepared for, especially on a day where I am physically and mentally exhausted, was for people to recognize us. I mean, it's great, the point of contacting the paper here in town was to raise awareness. It's GOOD that they know who we are, but I wasn't ready to talk about PWS. Not today. I hope I was polite, I hope I didn't brush people off. It's so hard, on days where it's literally the last thing I ever want to think about, to have to talk about it.
Why do we have to be different?