I feel sick. I have been reading about the effects of hypothyroidism on mental function, and according to research untreated infants can lose up to three to five IQ points per month
during the first year. PER MONTH... She's 13 months, she could have lost 39-65 IQ points already. It is as though the benefits to starting GH early have been erased by untreated hypothryodism.
I don't even know what to do. Fuck you Prader-Willi Syndrome. Seriously.
Thursday, May 31, 2012
Wednesday, May 30, 2012
Happy Birthday to Me!
Yesterday was my 29th birthday! I had a great day overall, in spite of spending the morning with Ellie in the hospital. I was so happy to spend the afternoon with my family, and indulged in cake and champagne. Thank goodness birthdays only happen once a year!
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| Flowers from my parents! |
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| Cake #1 It was amazing!! |
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| My two cakes :) I was spoiled!! |
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| She's getting to be so grown up! |
Talking Trachs Again
On my way out of the hospital yesterday, I ran into Dr. Dee. She was happy to see us, because apparently they had just been talking about Ellie in clinic, and the receptionist was going to call me to set up an appointment. Dr. Dee and I walked back to the respiratology clinic, and along the way we started chatting about Ellie. They're concerned about Ellie's mid-face hypoplasia (the underdevelopment of her nasal bridge, and progression of an underbite). Because Ellie grows while she is sleeping, and because she's always wearing her bipap mask while she's sleeping, her face is growing around the mask, rather than into the mask. As she is now on an increased dosage of growth hormone, the problem is only going to accelerate.
In addition to that, they don't think the bipap is bypassing all her obstructions, because she's not growing like they would expect, even on a relatively high dose of growth hormone. I know she still obstructs, the other day I hadn't finished cleaning her machine, but had her on her oximeter, and watched as she desatted to 63, and slowly came back out of it. Her apnea hasn't resolved at all, if anything it has gotten worse.
So, Dr. Dee told me that it is likely we will have to revisit the option of traching Ellie.
DH and I have talked about it a lot, we are really concerned about Ellie's face. The underbite is going to cause future orthodontic issues, as well as speech issues, not to mention the probability of permanent facial deformation. We would much rather have a stoma scar, than for Ellie to have to undergo reconstructive surgery on her face when she is older. A trach comes with a whole host of new responsibilities, more training, more equipment, and its fair share of risks, but in the long run it's probably what is best for her, because they don't know why she is obstructing, and because of that have no way of telling how long she will need ventilatory support a night.
Ellie goes in for a formal sleep study in August, following the long weekend, and then she will be admitted for a few nights so they can decide what to do with her. We're leaning towards pushing for a trach, despite trachs not being recommended for kids with PWS. Dr. Dee said Ellie is only one of two kids they've seen in their clinic with such severe sleep apnea and obstructions at her age, and it points to something other than PWS going on. Most of the contraindications for traching kids with PWS stem from their skin picking, which we're not into yet, and anesthesia related concerns (which wouldn't apply, since Ellie would be vented during the surgery, and post-operatively). So, who knows!
They want to figure out a plan before the fall flu/cold season strikes again.
In the mean time, planning for the possibility of this happening at the end of summer, we're going to do everything she might not be able to do with a trach, like go to the beach, go swimming, etc... so that she's at least had the experience!
In addition to that, they don't think the bipap is bypassing all her obstructions, because she's not growing like they would expect, even on a relatively high dose of growth hormone. I know she still obstructs, the other day I hadn't finished cleaning her machine, but had her on her oximeter, and watched as she desatted to 63, and slowly came back out of it. Her apnea hasn't resolved at all, if anything it has gotten worse.
So, Dr. Dee told me that it is likely we will have to revisit the option of traching Ellie.
DH and I have talked about it a lot, we are really concerned about Ellie's face. The underbite is going to cause future orthodontic issues, as well as speech issues, not to mention the probability of permanent facial deformation. We would much rather have a stoma scar, than for Ellie to have to undergo reconstructive surgery on her face when she is older. A trach comes with a whole host of new responsibilities, more training, more equipment, and its fair share of risks, but in the long run it's probably what is best for her, because they don't know why she is obstructing, and because of that have no way of telling how long she will need ventilatory support a night.
Ellie goes in for a formal sleep study in August, following the long weekend, and then she will be admitted for a few nights so they can decide what to do with her. We're leaning towards pushing for a trach, despite trachs not being recommended for kids with PWS. Dr. Dee said Ellie is only one of two kids they've seen in their clinic with such severe sleep apnea and obstructions at her age, and it points to something other than PWS going on. Most of the contraindications for traching kids with PWS stem from their skin picking, which we're not into yet, and anesthesia related concerns (which wouldn't apply, since Ellie would be vented during the surgery, and post-operatively). So, who knows!
They want to figure out a plan before the fall flu/cold season strikes again.
In the mean time, planning for the possibility of this happening at the end of summer, we're going to do everything she might not be able to do with a trach, like go to the beach, go swimming, etc... so that she's at least had the experience!
Tuesday, May 29, 2012
I had a great start to my day, Jakob bounded into my room, singing Happy Birthday. Then we skyped my parents, and I opened my presents, feeling very spoiled.
After we're done at the hospital (I finally picked up Ellie's duplicate tile!) We are stopping at Canadian Blood Services. I'm feeling good today, so if they let me, I will donate, then we will go join the boys at home for an afternoon together.
I feel so blessed to be here, to have everything I have.
Monday, May 28, 2012
Still no test results yet, but I wasn't expecting much to happen over the weekend. As for the weekend, it was good, but I'm exhausted!! The village where we live, hosts a fun festival every May, called May Days. There are rides, midway games, shopping booths, food, and entertainment. Jakob LOVED every minute of the two days we were there. On Saturday, I lacked the energy to walk around for too long, but DH, Ellie, Jakob and I still had a nice family time. DH took Jakob through a haunted house, and then Jakob amazed us by joyfully going on rides by himself. I think that a trip to PlayLand is in order this summer. I only lasted a couple hours, before we had to head home.
On Sunday, we walked from my inlaws' up to town to watch the parade. Ellie was mesmerized by everything, especially the pipers, and the big tractors. Jakob was in candy heaven, and presently in sugar detox mode.
Today, we spent a wonderful morning visiting with one of Ellie's friends from the ICU. Jakob was so quiet the whole visit, but as soon as we left wouldn't stop talking about "his" friend G! We had a nice lunch with Auntie Beth, and came home for naps (all three of us!)
I find it's easier for me to bunch together outings, rather than getting the kids in and out of the car more than once. I'm really struggling with carrying Ellie in her car seat, despite her barely weighing 13lbs. DH has tomorrow off, so we get a family day, after Ellie's thyroid testing is done.
I took new photos of our house, to add to our realty listing. Here's hoping more people come by who want to buy!!
On Sunday, we walked from my inlaws' up to town to watch the parade. Ellie was mesmerized by everything, especially the pipers, and the big tractors. Jakob was in candy heaven, and presently in sugar detox mode.
Today, we spent a wonderful morning visiting with one of Ellie's friends from the ICU. Jakob was so quiet the whole visit, but as soon as we left wouldn't stop talking about "his" friend G! We had a nice lunch with Auntie Beth, and came home for naps (all three of us!)
I find it's easier for me to bunch together outings, rather than getting the kids in and out of the car more than once. I'm really struggling with carrying Ellie in her car seat, despite her barely weighing 13lbs. DH has tomorrow off, so we get a family day, after Ellie's thyroid testing is done.
I took new photos of our house, to add to our realty listing. Here's hoping more people come by who want to buy!!
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| Front Entrance |
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| Living Room |
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| Dining Room |
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| Kitchen |
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| Kitchen Eating Area |
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| Landing Den |
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| "Ellie's" Room (that she's never used) |
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| Master Bedroom |
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| Patio and Garden |
Saturday, May 26, 2012
Waiting...
I haven't talked about this at all here, since I thought maybe it wasn't as bad as I thought it was.
I've been having joint pain for the better part of two years. It started in my hands, usually after a long bout of sewing. After a few days, it would go away. Well, recently, it's come back with a vengeance, and spread. I have pain in all my small joints (knuckles, wrists, elbows, where my collarbone connects, my toes, ankles, knees...) It is unbearable, so I finally went to the doctor.
The joint pain, combined with a constant feeling of exhaustion, and a weird rash that doesn't go away, has my doctor thinking I likely have lupus, or rheumatic arthritis. I'm waiting on test results to come back.
Today has been the worst day, by far. I woke up with my hands completely swollen. I could barely stand as I got our of bed. I shuffle around, because it hurts to move, and I feel like a zombie. We spent most of the day out, there's a May days festival in town, so we made the most of it, but I'm paying for my exertion. I am not used to being weak, or to choose sitting on the couch over being out and about. It's not pleasant.
I should, hopefully, know what's up by sometime next week. Both are auto-immune disorders, both can be brought on by stress, both suck. Of course, at this point, nothing surprises me anymore, and I know I can handle it. DH, on the other hand, is beside himself worrying about something being wrong with me :(
I've been having joint pain for the better part of two years. It started in my hands, usually after a long bout of sewing. After a few days, it would go away. Well, recently, it's come back with a vengeance, and spread. I have pain in all my small joints (knuckles, wrists, elbows, where my collarbone connects, my toes, ankles, knees...) It is unbearable, so I finally went to the doctor.
The joint pain, combined with a constant feeling of exhaustion, and a weird rash that doesn't go away, has my doctor thinking I likely have lupus, or rheumatic arthritis. I'm waiting on test results to come back.
Today has been the worst day, by far. I woke up with my hands completely swollen. I could barely stand as I got our of bed. I shuffle around, because it hurts to move, and I feel like a zombie. We spent most of the day out, there's a May days festival in town, so we made the most of it, but I'm paying for my exertion. I am not used to being weak, or to choose sitting on the couch over being out and about. It's not pleasant.
I should, hopefully, know what's up by sometime next week. Both are auto-immune disorders, both can be brought on by stress, both suck. Of course, at this point, nothing surprises me anymore, and I know I can handle it. DH, on the other hand, is beside himself worrying about something being wrong with me :(
Friday, May 25, 2012
What a Friday!
I worked all day, and came home to discover that Ellie finally, finally sprouted her first tooth!! Bottom, on the right :) As I walked into the room, completely exhausted, Ellie locked eyes with me, and said "Mummy", and then she smiled.
I can't even begin to tell you what a miracle that is. She babbles, sometimes, but this was her first purposeful word.
I couldn't be happier.
I can't even begin to tell you what a miracle that is. She babbles, sometimes, but this was her first purposeful word.
I couldn't be happier.
Wednesday, May 23, 2012
Test results
It isn't usually a good thing when doctors leave messages on your phone about test results having come back.
Such was the case this morning. Ellie's thyroid levels came back low. They want her to go in for TSH testing, which involves fasting from midnight, and a few hours of E being stuck at the medical day unit.
The testing date? On Tuesday. I have no nurse on Monday night, and we have to be at the hospital at 8:30am. Jakob can't come, and he has a special day at school. DH has to take the day off, otherwise I'm stuck. Oh, and Tuesday is my birthday. Fantastic.
I've been so grumpy today. We had to be out of the house for a showing, and Jakob made it sooo hard to get the house ready. Let's just say, smashed candle wax is HARD to get off hardwood. Gah.
I am almost ready to take the kids home, but DH is at some retirement function this evening, and not going to be of any help.
Why can't kids count as drinking companions? Too bad!
Tuesday, May 22, 2012
Appointments
We are having a busy day at Children's today. Ellie had an endocrinology appointment, to assess her rate of growth (it had slowed), and to monitor IGF-1 levels and thyroid function. She was a trooper through the bloodwork.
We met with the dietician, and I was glad to hear that we're on the right track. Somewhere along the lines someone asked if I thought I was feeding Ellie enough. I can't remember who it was, but it was enough to sow the seeds of doubt for me. Ellie's growing like she should be, although she had outgrown her GH dosage, so that's been bumped up by 0.05mg daily.
Today is Ellie's 13 month birthday, I can't believe it has already been a month since her first birthday!! She's 62.3cm (24.5"), and 5.85kg (12lbs14oz).
Next, we're waiting on a consult with speech therapy, and also with audiology. Ellie's doctor today was concerned that maybe Ellie's delays in speech are related to an underlying hearing issue. I would be happy to have her hearing tested, and treated if it is a problem.
I'm making beef stew, with lima beans, onion, tomato, peppers and pasta for dinner, all cooking nicely in my crock pot. Our house is showing tomorrow afternoon, so after the kids go down for the night, I have my work cut out for me, getting it showing ready once again.
Sunday, May 20, 2012
Rainy Day Cooking
My house smells incredibly good at the moment! I decided, since it's raining out, to make comfort food for dinner. Normally, my choice would be macaroni and cheese, but DH asked for meatloaf last week! Finally my chance to try it out.
We haven't gone grocery shopping recently, and I have been wanting to use up some of the things in the freezer, and in our pantry, so that there is less to move when we eventually move.
On the menu for this evening: Southwest Turkey Lentil Meatloaf.
I haven't made a meatloaf, um, ever. Here's how I did it:
-Boil 1/2c green lentils
-Preheat oven to 400C
-Brown 1lb of lean ground turkey, in 2 tsp oil (your choice, I used Safflower) in a large frying pan
-Add 1c southwest salsa, and cooked lentils
-Add 1c fine bread crumbs (I grated a stale baguette directly into the frying pan)
-Grate 1 carrot into the mix
-Add two eggs, stir, and put into a grease loaf pan.
-In a bowl, mix two tbsp ketchup with 1.5 tbsp balsamic reduction.
-Spoon on top of meat/lentil mixture
-Bake for 55min.
It came out of the oven looking amazing. The sauce was all caramelized, and mmmmm... Then, how in the heck do you get a meatloaf out of the pan?
I tried... it didn't work! It split in half, half came out, the rest stayed in the pan. I think I didn't leave it to cool enough. Oops! In anycase, I sampled it, and HOLY COW it's delicious!!!!!
We haven't gone grocery shopping recently, and I have been wanting to use up some of the things in the freezer, and in our pantry, so that there is less to move when we eventually move.
On the menu for this evening: Southwest Turkey Lentil Meatloaf.
I haven't made a meatloaf, um, ever. Here's how I did it:
-Boil 1/2c green lentils
-Preheat oven to 400C
-Brown 1lb of lean ground turkey, in 2 tsp oil (your choice, I used Safflower) in a large frying pan
-Add 1c southwest salsa, and cooked lentils
-Add 1c fine bread crumbs (I grated a stale baguette directly into the frying pan)
-Grate 1 carrot into the mix
-Add two eggs, stir, and put into a grease loaf pan.
-In a bowl, mix two tbsp ketchup with 1.5 tbsp balsamic reduction.
-Spoon on top of meat/lentil mixture
-Bake for 55min.
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| Right out of the oven |
I tried... it didn't work! It split in half, half came out, the rest stayed in the pan. I think I didn't leave it to cool enough. Oops! In anycase, I sampled it, and HOLY COW it's delicious!!!!!
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| After my failed attempt to remove it from the pan! Still SO GOOD. |
Friday, May 18, 2012
Back into the swing of things...
Today was another exceptional day, made even brighter by some good news in the family (can't share til I'm allowed to!)
Ellie was up at dawn, again. She is such a joy to wake up to, regardless of the fact that I would rather sleep in!
Ellie spent part of her morning looking out the window, spying on our neighbour's cat.
Jakob got a hair cut:
Then, we went to the park:
Ellie was up at dawn, again. She is such a joy to wake up to, regardless of the fact that I would rather sleep in!
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| Bright eyed girl, first thing in the morning. |
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| Before |
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| After! He looks so old. |
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| En |
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| The sun was too bright, she wouldn't look up |
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| We spent some time on the see-saw. She loved it! |
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| Peekaboo! |
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| Highlight of the day: a duck came to visit through the fence |
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| Ellie watched on, as Jakob followed the duck around the park :) |
Fairy Garden
When I was little (okay, fine, if I'm honest this is still somewhat ongoing), I believed in fairies. I loved the idea of turning a part of my garden into a fairy garden. At my parents' house, they had a little section of their yard, which would have been perfect, but I never did get around to doing anything about it.
Now that we're moving, I've been thinking about it again. I typed "Fairy Garden" into Pinterest, and found a TON of amazing ideas. Seriously, I'm not the only adult with lingering childhood fantasies!
There are nurseries with entire sections devoted to fairy gardens, complete with miniature trees, fancy mosses, grass, you name it. DH is surprisingly on-board with this idea, likely because he figures I will abandon my chicken coop dreams.
All I need is a shady, North facing section of a garden, preferably with an old tree!
Now that we're moving, I've been thinking about it again. I typed "Fairy Garden" into Pinterest, and found a TON of amazing ideas. Seriously, I'm not the only adult with lingering childhood fantasies!
There are nurseries with entire sections devoted to fairy gardens, complete with miniature trees, fancy mosses, grass, you name it. DH is surprisingly on-board with this idea, likely because he figures I will abandon my chicken coop dreams.
All I need is a shady, North facing section of a garden, preferably with an old tree!
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| How cute is this? Complete with clothesline!! |
| Love the little riverbed, and bridge. |
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| Love the staircase, and the door! |
Thursday, May 17, 2012
May 17
I can't begin to express how content I am in life these days. Today, our fourth wedding anniversary, was a beautiful, fulfilling day.
I woke up early to relieve the nurse, and when I came downstairs, Ellie was already awake. Some mornings, she sleeps until 9am, this morning she decided that 6am was time. I unhooked her from her oximeter, took off her bipap mask, and carted her upstairs for a snuggle.
Our house is presently "staged", and as such I have no intention of moving anything, at least until after our first real open house. This puts my oh-so-comfy couch out of commission until early next week, at the earliest. Ellie was happy to lay on my pillow, pulling out my hair, poking my eyes, and trying to eat my cheeks. By chance, and quite the rare occasion, Jakob needed to be woken up at 8:30am to get ready for school. My alone time with Ellie, while both boys were sleeping, was such a nice way to start the day.
The four of us had breakfast, got dressed, and headed off to pre-school. Jakob's class went on a field trip to a local blueberry farm, and DH agreed to come with us. We had a BLAST! The farm is just a few minutes down the road from us (that's a bonus to living in the country), and completely picturesque. Gorgeous farm house, sprawling lawns, and blueberry bushes as far as you could see. We were treated to a hay ride around the fields, a lesson on how blueberries are grown, and a frozen blueberry treat. It was a lot windy, and a bit chilly, so we bundled Ellie in Jakob's winter jacket. She was so happy to come along for the ride, she beamed the entire time.
Jakob is obsessed with blueberries. They are his all time favourite food, and last year he went through upwards of thirty pounds of them, all on his own. This field trip was so amazing for him. He chatted the whole ride back to school about how fun it was, and told us everything he remembered about how blueberries are grown.
We dropped him off at school, and had an hour to ourselves before the end of class. We decided to head over to our local nursery, and discovered that they have a "Grown Your Own Pie" promotion going on, and their little blueberry bushes were 50% off! We bought two bushes, along with a pair of little gardening gloves for Jakob.
When he came home, he was still excited about the field trip, and we took him out back to show him his surprise. Ah, I wish I had been able to capture the look on his face. I was absolutely thrilled that we had bought the bushes, he recognized them immediately, by their little white bell flowers. He spent the next couple hours in the garden with DH, planting them into pots, watering them, weeding the flower beds, and tending to our little strawberry plants. He is a little green thumb.
Later in the afternoon, we headed over to my inlaw's, so that Jakob could really run around. He LOVES to be outside. I swear he would stay out forever, if we let him. Ellie got a little sun, and it's so nice to see her little cheeks all rosy. She's such a beautiful little babe, with her bright blonde hair that shines in the sun, and her big blue eyes. She's completely stolen my heart.
Carrying her around for the better part of the day, I am so grateful that she's little. She is definitely our last baby, and I love the baby stage. At a year, Jakob was 25lbs, running, and had no time for snuggles. He grew so quickly, it was hard to keep him in pants that fit! At a year, Ellie is barely 13lbs, and still such a baby. She snuggles, she cuddles, she loves to be loved upon. I sorted through some clothes from my niece, and Ellie still doesn`t fit most of what was given to us at my baby shower! Clothes that were intended for last summer, are still too big! I'm really in no hurry for her to grow up, although it is the most amazing feeling to see her succeed a things.
She had a session today with our IDP worker, and every session she improves. We got a little walker today, just one of those little activity centers on wheels, that she holds on to and toodles around with. Last week, she wouldn't hold on, and fell right away. Today, she held on with no complaint, and took steps as long as I provided a little support around her hips. She's progressing quickly outside of the hospital. Whoever it was that told me babies don`t progress in hospitals was very right.
So, now it`s late, and my day is almost through. Jakob is sleeping, DH is sleeping because he has work tomorrow morning, and Ellie is snoozing on her bipap machine. She was so tired when we got home, that in the few minutes it took between my hooking up her oximeter, and turning on the bipap, she had a serious desat to 63, which wasn`t fun for me to watch. That was all the proof I needed that she most certainly still needs this loud machine.
Our nurse should be here within the hour, and I will go to bed. I am exhausted, but so happy with how the day went.
I woke up early to relieve the nurse, and when I came downstairs, Ellie was already awake. Some mornings, she sleeps until 9am, this morning she decided that 6am was time. I unhooked her from her oximeter, took off her bipap mask, and carted her upstairs for a snuggle.
Our house is presently "staged", and as such I have no intention of moving anything, at least until after our first real open house. This puts my oh-so-comfy couch out of commission until early next week, at the earliest. Ellie was happy to lay on my pillow, pulling out my hair, poking my eyes, and trying to eat my cheeks. By chance, and quite the rare occasion, Jakob needed to be woken up at 8:30am to get ready for school. My alone time with Ellie, while both boys were sleeping, was such a nice way to start the day.
The four of us had breakfast, got dressed, and headed off to pre-school. Jakob's class went on a field trip to a local blueberry farm, and DH agreed to come with us. We had a BLAST! The farm is just a few minutes down the road from us (that's a bonus to living in the country), and completely picturesque. Gorgeous farm house, sprawling lawns, and blueberry bushes as far as you could see. We were treated to a hay ride around the fields, a lesson on how blueberries are grown, and a frozen blueberry treat. It was a lot windy, and a bit chilly, so we bundled Ellie in Jakob's winter jacket. She was so happy to come along for the ride, she beamed the entire time.
Jakob is obsessed with blueberries. They are his all time favourite food, and last year he went through upwards of thirty pounds of them, all on his own. This field trip was so amazing for him. He chatted the whole ride back to school about how fun it was, and told us everything he remembered about how blueberries are grown.
We dropped him off at school, and had an hour to ourselves before the end of class. We decided to head over to our local nursery, and discovered that they have a "Grown Your Own Pie" promotion going on, and their little blueberry bushes were 50% off! We bought two bushes, along with a pair of little gardening gloves for Jakob.
Carrying her around for the better part of the day, I am so grateful that she's little. She is definitely our last baby, and I love the baby stage. At a year, Jakob was 25lbs, running, and had no time for snuggles. He grew so quickly, it was hard to keep him in pants that fit! At a year, Ellie is barely 13lbs, and still such a baby. She snuggles, she cuddles, she loves to be loved upon. I sorted through some clothes from my niece, and Ellie still doesn`t fit most of what was given to us at my baby shower! Clothes that were intended for last summer, are still too big! I'm really in no hurry for her to grow up, although it is the most amazing feeling to see her succeed a things.
She had a session today with our IDP worker, and every session she improves. We got a little walker today, just one of those little activity centers on wheels, that she holds on to and toodles around with. Last week, she wouldn't hold on, and fell right away. Today, she held on with no complaint, and took steps as long as I provided a little support around her hips. She's progressing quickly outside of the hospital. Whoever it was that told me babies don`t progress in hospitals was very right.
So, now it`s late, and my day is almost through. Jakob is sleeping, DH is sleeping because he has work tomorrow morning, and Ellie is snoozing on her bipap machine. She was so tired when we got home, that in the few minutes it took between my hooking up her oximeter, and turning on the bipap, she had a serious desat to 63, which wasn`t fun for me to watch. That was all the proof I needed that she most certainly still needs this loud machine.
Our nurse should be here within the hour, and I will go to bed. I am exhausted, but so happy with how the day went.
Wednesday, May 16, 2012
Sunny day in the city!
Todays been a very big day! Our house is officially on the market, and I think all our hard work will pay off. I'm anxious to hear how the day went, but I've been at work all day (I seriously have a fantastic job, I love it!!) And I'm headed to have drinks with a friend before I go home.
I see someone I know every time I go downtown. Today, it was a preschool (as in, when we went to preschool together) friend. It never fails to amaze me, when people I haven't seen in YEARS follow our story. I am so awkward about it, it is pretty funny.
The sun is shining, I've spent the day sailing through work, while watching cruise ship activity and float planes landing.
I am happy.
Tomorrow marks DH and my 4th wedding anniversary. How has it been 4 years? Seems like no time at all.
Time to get off this sweaty, stinky train, and onto a sunny patio with a cold beer.
Happpy Wednesday!
I see someone I know every time I go downtown. Today, it was a preschool (as in, when we went to preschool together) friend. It never fails to amaze me, when people I haven't seen in YEARS follow our story. I am so awkward about it, it is pretty funny.
The sun is shining, I've spent the day sailing through work, while watching cruise ship activity and float planes landing.
I am happy.
Tomorrow marks DH and my 4th wedding anniversary. How has it been 4 years? Seems like no time at all.
Time to get off this sweaty, stinky train, and onto a sunny patio with a cold beer.
Happpy Wednesday!
Tuesday, May 15, 2012
Monday, May 14, 2012
Home again
We picked up Miss E yesterday afternoon, and had a rather terrific Mother's Day afternoon. Spent the late afternoon with my brother, and the evening with my inlaws.
Today, our house was staged, and I think it looks fantastic. It's a no nurse night (grumble), so looks like I'm going to be up all night. Happy she's home, though. Definitely, definitely prefer her being home.
Today, our house was staged, and I think it looks fantastic. It's a no nurse night (grumble), so looks like I'm going to be up all night. Happy she's home, though. Definitely, definitely prefer her being home.
Saturday, May 12, 2012
She is doing much better today, although she just threw up about half an hour ago. She is super sleepy, so on bipap until her next feed.
This room used to be the best, it had a row of windows. I am not sure if you can tell by the photo, but the windows have been boarded up with white plexiglass. I heard a rumour that they will eventually get some sort of treatment to make it feel like they're functiional windows. The new MRI clinic is now on the other side of the wall.
Everyone is so nice, all happy to stop by to chat. It isn't very busy in here right now, just three little in the ward, and another in beside where Ellie was yesterday.
I thought we might go home today, but nope, she is definitely here until tomorrow.
Tomorrow I am going to bring jakob into Vancouver, with the furniture we are going to store at my parents' place, and with any luck, my brother will watch Jakob when I come to get Ellie.
It is so beautiful out, but FREEZING in here. I am so glad I changed into pants! Had I stayed in my shorts, I wouldn't be able to stand the cold!
Saturday
The sun is shining, my kitchen is clean, my laundry is put away, and I've had a shower. Normally, on a day where DH is working, I would say that wasn't possible, but with Ellie in the hospital, and my not being able to get there before 2pm, it's amazing how much I have been able to accomplish.
Originally, we were going to have our house staged last week, but then C got sick, and couldn't come, so we pushed everything back a week. DH and I have said so many times along this getting-the-house-ready journey, that there's always something that comes up. But, it all happens for a reason. If we'd gone ahead with the staging last week, I don't know how I would have managed with Ellie in the hospital, and Jakob still under the weather, if we had had to have the house ready for two open houses!
C is coming on Monday morning, to stage, and we'll have photos taken on Tuesday, with the realtors' open house on Wednesday. Ellie should be home either tonight or tomorrow, so tomorrow we will be able to move out all the pieces we don't need in the house. It's all going to work out!
Also, there have been quite a few houses added to the market this week, which are all in our price range. I've noticed there's an increased inventory of houses for sale, but they're not really moving as quickly as they were a couple months ago.
Time to get ready to go see my girl :)
Originally, we were going to have our house staged last week, but then C got sick, and couldn't come, so we pushed everything back a week. DH and I have said so many times along this getting-the-house-ready journey, that there's always something that comes up. But, it all happens for a reason. If we'd gone ahead with the staging last week, I don't know how I would have managed with Ellie in the hospital, and Jakob still under the weather, if we had had to have the house ready for two open houses!
C is coming on Monday morning, to stage, and we'll have photos taken on Tuesday, with the realtors' open house on Wednesday. Ellie should be home either tonight or tomorrow, so tomorrow we will be able to move out all the pieces we don't need in the house. It's all going to work out!
Also, there have been quite a few houses added to the market this week, which are all in our price range. I've noticed there's an increased inventory of houses for sale, but they're not really moving as quickly as they were a couple months ago.
Time to get ready to go see my girl :)
Friday, May 11, 2012
It's 9:20pm, and Jakob is sleeping in his own bed, DH is working, and Ellie's at the hospital. I called to check on her. You know what's sad? When you know the voice of the person on the other end of the line without them identifying themselves.
In any case, the stuff they gave her to stop the vomiting seems to have worked. No barfs. She got her minimum fluid intake today (450ml), and tomorrow they're going to work on bringing her up to full formula - right now she's getting half pedialyte, half formula. On Sunday, we'll talk about solids.
Little Miss has dropped down to 13lbs1oz, which is frustrating. But, she is really doing amazingly well, all things considered. Everyone is blown away by how much she's progressed since coming home, and our nurse today reminded me how far she's come in 5 months, from the little blob that was first admitted to the ICU in December, to a beautiful, strong, incredible little girl.
Can't wait to see her tomorrow, some how... I think I have to wait for DH to wake up, so he can watch Jakob, then I can go into town, and maybe they can meet me at the hospital on DH's way to work.
In any case, the stuff they gave her to stop the vomiting seems to have worked. No barfs. She got her minimum fluid intake today (450ml), and tomorrow they're going to work on bringing her up to full formula - right now she's getting half pedialyte, half formula. On Sunday, we'll talk about solids.
Little Miss has dropped down to 13lbs1oz, which is frustrating. But, she is really doing amazingly well, all things considered. Everyone is blown away by how much she's progressed since coming home, and our nurse today reminded me how far she's come in 5 months, from the little blob that was first admitted to the ICU in December, to a beautiful, strong, incredible little girl.
Can't wait to see her tomorrow, some how... I think I have to wait for DH to wake up, so he can watch Jakob, then I can go into town, and maybe they can meet me at the hospital on DH's way to work.
Photos of Ellie's Bugs
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| Norovirus (aka Norwalk) |
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| Human Metapneumovirus (our March visitor) |
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| Human Parainfluenza (Paraflu) from December |
We're back
The stomach flu has been running through our family this week, DH and I were the first to get it, then we had a couple days reprieve, before Jakob and Ellie simultaneously started projectile vomiting at me and all over our new couch. Fantastic.
As Ellie's airway is vulnerable, I didn't feel comfortable having her on bipap while sick, even with a home nurse.
So, we drove in to the hospital. Spent six hours in an er room, before being moved to ICU. All my anxiety fled when E got here. The staff, nurses, doctors, they're all so amazing.
The ICU is a very special place.
Dr. Dee wants us to stay until Sunday, to make sure Ellie's totally in the clear. If only it weren't so nice outside!! Really, it is gorgeous, and we are in a windowless room!
As Ellie's airway is vulnerable, I didn't feel comfortable having her on bipap while sick, even with a home nurse.
So, we drove in to the hospital. Spent six hours in an er room, before being moved to ICU. All my anxiety fled when E got here. The staff, nurses, doctors, they're all so amazing.
The ICU is a very special place.
Dr. Dee wants us to stay until Sunday, to make sure Ellie's totally in the clear. If only it weren't so nice outside!! Really, it is gorgeous, and we are in a windowless room!
Wednesday, May 9, 2012
Work
Starting tomorrow, and once a week from here on out, I am reclaiming my professional life. It's been almost four years since I last worked in an office, and by some miracle (or just because I have incredible friends), I found a position that sounds interesting, is flexible around DH's work schedule so we don't need daycare, pays well, and is easy to get to! I am beyond excited.
I went shopping with my Mom before she left, so that I would have clothes to wear for work. I gave away all my office clothes after Jakob was born, when SusieCues was in full swing, and I didn't think I would ever go back to "real" work. Then Ellie was born, and SusieCues became impossible to keep up, and my hands started failing me. I honestly think I have arthritis in my hands, every time I sew, my hands hurt for ages afterward!
So, I didn't have any clothes, and I wasn't sure if I would even get the job, but we decided it was a good idea to have some outfits ready just in case. I bought a few pairs of nice pants, a skirt, jacket, some sweaters, and tops. Since the position is only once a week, I have more than enough to see me through summer!
I am giddy at the thought of leaving the house tomorrow, not worrying about feeding people, dressing people, generally looking after people. I can focus on myself and my work. I CANNOT WAIT!
I went shopping with my Mom before she left, so that I would have clothes to wear for work. I gave away all my office clothes after Jakob was born, when SusieCues was in full swing, and I didn't think I would ever go back to "real" work. Then Ellie was born, and SusieCues became impossible to keep up, and my hands started failing me. I honestly think I have arthritis in my hands, every time I sew, my hands hurt for ages afterward!
So, I didn't have any clothes, and I wasn't sure if I would even get the job, but we decided it was a good idea to have some outfits ready just in case. I bought a few pairs of nice pants, a skirt, jacket, some sweaters, and tops. Since the position is only once a week, I have more than enough to see me through summer!
I am giddy at the thought of leaving the house tomorrow, not worrying about feeding people, dressing people, generally looking after people. I can focus on myself and my work. I CANNOT WAIT!
Monday, May 7, 2012
Saturday, May 5, 2012
Crafting again
I woke up feeling a little under the weather this morning. In spite of that, I had promised myself that Jakob wouldn't watch more than an hour of television this morning. So, we were up early (Jakob woke up when I came down to relieve the nurse, and he woke Ellie up). We had breakfast, and then planned our day.
Jakob wanted to go outside, and thank goodness the weather is nice today. He played outside with DH for a couple hours, while I had some time to myself, as Ellie napped.
This afternoon, we had lunch, and I was glad I'd made enough food yesterday to last us until tomorrow. After lunch, DH went to work, and Jakob, Ellie and I went back outside. Jakob has a bubble blower he loves to run around with, and it was nice to sit in the sun.
Then, we got crafty. All my crafting things are packed up, and in storage at my inlaw's place (insert sad face here). I had to rustle up something, otherwise I knew the tv would be turned on.
Jakob and I made Sharpie "Tie-Dyed" onesies for Ellie. All you need are Sharpies, a shirt, and some rubbing alcohol in a spray bottle!
Now we're chilling in the living room, Ellie is napping, Jakob is almost asleep, and I'm thinking of going to eat some cookie balls...
Jakob wanted to go outside, and thank goodness the weather is nice today. He played outside with DH for a couple hours, while I had some time to myself, as Ellie napped.
This afternoon, we had lunch, and I was glad I'd made enough food yesterday to last us until tomorrow. After lunch, DH went to work, and Jakob, Ellie and I went back outside. Jakob has a bubble blower he loves to run around with, and it was nice to sit in the sun.
Then, we got crafty. All my crafting things are packed up, and in storage at my inlaw's place (insert sad face here). I had to rustle up something, otherwise I knew the tv would be turned on.
Jakob and I made Sharpie "Tie-Dyed" onesies for Ellie. All you need are Sharpies, a shirt, and some rubbing alcohol in a spray bottle!
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| Jakob's |
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| Mine |
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| My body spray lid fit the alcohol bottle perfectly! |
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| Spray the drawing with alcohol & wait for it to dry! |
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| Drying... I LOVE Jakob's, the colours are amazing together. Mine is boring! |
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| Can't wait for Ellie to grow into this size! |
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| Rainbow water Xylophone |
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| Bath Cubes |
Friday, May 4, 2012
I'm not having the greatest week, so I did some baking with Mr. Kitchen Helper, and we baked the most scrumptious Chocolate Chip Cookie Balls, in my cake pop machine. LOVE and a lot of drooooool.
On another note, Ellie seems to be thinning out at a pretty quick pace, so we've increased her intake. It's tricky, trying to balance what she gets, with what she burns, making sure she gains enough, without it being too much, or too little, and still making sure she grows in height, and keeps developing. So far, we've managed to get her weight-for-length ratio in check (YAY!) and now she hovers around the 40th percentile for that.
She's eating most of what we eat these days, thrown through the blender to a consistency she will take. Every day we make it a little thicker, with a bit more texture, so far so good!
She gained half an ounce in two weeks, but only grew half a centimeter, which is less than she's ever grown while on GH therapy. I don't know what to make of it, she's never hit "catch up" rate of growth, so I emailed the endocrine office, and am waiting to hear back to see if we can adjust Ellie's dosage before the end of summer. She is 13lbs4oz, and 24.21" (61.5cm)
Ellie can now hold herself in a 4-point (pre-crawling) position, which is amazing! Her pull-up skills are out of this world, and yesterday she tried side-stepping. She picks up on everything so very quickly, I am so proud of her!
On another note, Ellie seems to be thinning out at a pretty quick pace, so we've increased her intake. It's tricky, trying to balance what she gets, with what she burns, making sure she gains enough, without it being too much, or too little, and still making sure she grows in height, and keeps developing. So far, we've managed to get her weight-for-length ratio in check (YAY!) and now she hovers around the 40th percentile for that.
She's eating most of what we eat these days, thrown through the blender to a consistency she will take. Every day we make it a little thicker, with a bit more texture, so far so good!
She gained half an ounce in two weeks, but only grew half a centimeter, which is less than she's ever grown while on GH therapy. I don't know what to make of it, she's never hit "catch up" rate of growth, so I emailed the endocrine office, and am waiting to hear back to see if we can adjust Ellie's dosage before the end of summer. She is 13lbs4oz, and 24.21" (61.5cm)
Ellie can now hold herself in a 4-point (pre-crawling) position, which is amazing! Her pull-up skills are out of this world, and yesterday she tried side-stepping. She picks up on everything so very quickly, I am so proud of her!
Thursday, May 3, 2012
Love and Confidence
I am so thankful, so grateful, for every day I have with my family. I've heard such sad news from so many different people over the last two weeks, that it's all I can do to hug my babies close, and thank heaven for our health.
Ellie's journey is one of purpose. She is here, I believe, to bring out the best in DH and I, to teach Jakob how to be a kind, loving, empathetic, caring man, to show the world how to love. I just love her so much, I can't even begin to put my feelings for her into words. Words are not enough!
How can such a little being compel so much love, so much caring? She has the ability to make anyone smile, even the grumpy old man we passed yesterday on our walk around town, who was frowning, yelling at traffic, and grumbling to himself - when he locked eyes with Ellie, his face bloomed into the most incredible toothless grin, his eyes sparkled like he was a young man. The transformation was extraordinary, and the best part was that Ellie mirrored his expression perfectly.
I've seen it happen more times than I can count, Ellie lifts people's spirits. It's effortless, it's just what she does.
My heart is so full, and yet every day it seems I love my kids more than the day before. I don't know how it is possible, but my ability to love has been multiplied exponentially.
Sometimes I think I love Ellie SO much because I am subconsciously trying to make sure her love reservoirs are filled to the max, so come the day that someone doesn't fall for her big blue eyes, tousled blonde hair, and amazing smile, and they act the way so many people do towards people with disabilities, that it bounces off her, and she is solid in her self-confidence, in her self-love, and in knowing just how many people love her for being her. I watched an incredibly inspiring video at AboutLizzie.com today. Lizzie has an undiagnosed disorder, and I first read about her when I was researching PWS. She's endured the most horrific forms of bullying, and she holds her head high, focusing on the things she wants to accomplish, not letting people and their mean spirits get her down.
I was having a chat with Jakob, before bed the other night. I told him I loved him more than the whole world, more than just about everything I could imagine. He told me he loved me more, and that he loved his Daddy, and he loved his Ellie, "and, I love ME! Me! Me! Me! I really love myself, Mommy!". My heart burst, and it felt as thought I was handed a "Job Well Done" award, on a silver platter.
I can only hope to continue to encourage my children to learn without fear, to play with reckless abandon, to love with every ounce of their beings, and to believe in themselves, and their potential, just as much as DH and I believe in them.
These little people, how was I so blessed to be chosen to raise and care for them? It is life's most incredible gift <3
Ellie's journey is one of purpose. She is here, I believe, to bring out the best in DH and I, to teach Jakob how to be a kind, loving, empathetic, caring man, to show the world how to love. I just love her so much, I can't even begin to put my feelings for her into words. Words are not enough!
How can such a little being compel so much love, so much caring? She has the ability to make anyone smile, even the grumpy old man we passed yesterday on our walk around town, who was frowning, yelling at traffic, and grumbling to himself - when he locked eyes with Ellie, his face bloomed into the most incredible toothless grin, his eyes sparkled like he was a young man. The transformation was extraordinary, and the best part was that Ellie mirrored his expression perfectly.
I've seen it happen more times than I can count, Ellie lifts people's spirits. It's effortless, it's just what she does.
My heart is so full, and yet every day it seems I love my kids more than the day before. I don't know how it is possible, but my ability to love has been multiplied exponentially.
Sometimes I think I love Ellie SO much because I am subconsciously trying to make sure her love reservoirs are filled to the max, so come the day that someone doesn't fall for her big blue eyes, tousled blonde hair, and amazing smile, and they act the way so many people do towards people with disabilities, that it bounces off her, and she is solid in her self-confidence, in her self-love, and in knowing just how many people love her for being her. I watched an incredibly inspiring video at AboutLizzie.com today. Lizzie has an undiagnosed disorder, and I first read about her when I was researching PWS. She's endured the most horrific forms of bullying, and she holds her head high, focusing on the things she wants to accomplish, not letting people and their mean spirits get her down.
I was having a chat with Jakob, before bed the other night. I told him I loved him more than the whole world, more than just about everything I could imagine. He told me he loved me more, and that he loved his Daddy, and he loved his Ellie, "and, I love ME! Me! Me! Me! I really love myself, Mommy!". My heart burst, and it felt as thought I was handed a "Job Well Done" award, on a silver platter.
I can only hope to continue to encourage my children to learn without fear, to play with reckless abandon, to love with every ounce of their beings, and to believe in themselves, and their potential, just as much as DH and I believe in them.
These little people, how was I so blessed to be chosen to raise and care for them? It is life's most incredible gift <3
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