My Baby's Life

My baby girl was born on September 15 2009 and left to be in heaven December 26 2012. I had 3 wonderful, amazing years and 4 Christmas' with my angel. She was smart and happy and beautiful. I always joked Kevin would need those swords of his in a few years to keep the boys at bay.  She was adventurous and just plain loved life. She was my reason to get up in the morning.

It was so sudden and shocking. She was fine that morning and gone by afternoon. I still keep thinking she will come rolling out of her room calling "mom" and asking for her "bears".

Everyone keeps asking what they can do for us and I don't even know how to get up in the morning let alone what I need.

Janice Margaret Destiny-Ann was my beautiful baby that left this world too soon. She had a contagious smile and made everyone smile. She touched everyone's heart she met and will always be my angel.

Mommy misses you sweetie. You were our monkey and always will live in our hearts.

been a while

I guess it has been a while since I posted on here, not that I think many people read but more an issue of time and things to blog about. 

Since my last blog, Janice turned 3 which we spent her birthday in Vernon as we normally do for the September birthdays on Kevin's side of the family. I turned 28 which was as normal around Thanksgiving. We did the two suppers thing but this year Kevin's sister Laura was in town and it was decided that we were doing a October birthday special in Vernon which was nice. 

Mostly it has been allot of work and family stuff. Janice has her wheelchair which she will be growing out of fairly quickly I think. Although Vancouver still harps about vitamin D and weight I think we have made progress, she is taking dissoluble vitamin D pills daily and Kamloops doctors seem to be happy with her weight but as normal I will keep monitoring it and hope Vancouver might actually be happy next visit.

We were down in Vancouver at the beginning of September and the only things they would say were "she needs vitamin D" and "She weighs the same as she did in June" I know they are good people but sometimes they irritate me. They wanted us down again for November 29th but after talking to her pediatrician and the nurse clinician I have staved that off as I can't afford to take the time off during the blackout period with Christmas coming nor do I want to transverse the  Coquihalla highway in November/December.

Janice has a cough again. She seems to get them 2-5 times a year. At least now with the inhalors we don't end up in the hospital each time. I don't like hearing her cough but at least she is home and comfortable with her toys and "Bears". My angel loves the Care Bears that seems to be all she wants to watch these days. We have been doing good, no tube feed since June; OK that is a lie she has had 2-3 since June but it is mainly now when she is sick that she gets them and that is because she isn't eating much. 

On that note I will turn off the computer for now and will hopefully post again soon with not so long of a gap. But I also have to post christmas lists and finish Christmas shopping as we have 3 more gifts to buy as my niece and nephews are coming down for the first Christmas since they were born. It should be a good holiday.

Feeling sorry for myself

I know this is petty but I can't help myself. Why can everyone else have perfect, healthy babies when mine can't walk and has other things wrong with her? I know it has been almost three years but I still seem to get constant reminders of all the things that she will never be able to do. I end up grieving all over again for the things she will miss out on while I watch everyone else have children with no issues that can take dance and play any sport they want. I see people chasing after their little ones and I laugh but inside I miss that there isn't going to be much if any of that for me. Sure she has her board and eventually her chair but she can't go that fast with either of them. I will never be able to teach her how to skate or play baseball. I know there are alot of advances in things that people can do from chairs but that doesn't mean they can do everything a person with use of their legs can. 

A lot of the people that had kids the same time as Janice was born are on seconds and I can't because I have too many other concerns with Janice and financial issues to be able to even consider giving her a sibling. People say I am strong and they don't know how I dealt with and continue to deal with Janice's medical chart as it were and there are days I don't even know. 

She is my angel and just seeing her makes me smile but there is so much more I wish she could experience and do and it makes me sad.  Janice has the best out look on life I could have wished for her but is that going to last her all of her life?? I wish I knew.

Update: new place

Well we are loving our new place and everyone seems to be impressed when they see it. Janice is happy with her room and the balcony although she has dropped 3 things off the edge. The floor is quickly dirtied but just as quickly cleaned. I love being able to do laundry on my time table and not having to worry about totting Janice up and down stairs. I can do it while she is playing or watching tv or her trying to help me lol. It is cute she keeps wanting to "help".

Slowly finding a home for everything. Still a few things that I want to pick up to make things look better and give a home to some books and other nick knacks. The landlords are great the few things that needed fixing have been looked into. The top shelf for the fridge we got on the weekend; the shower and carpets have been checked. They are very good at getting to things in a timely fashion.

Again the location is beautiful, walking distance to everything from shopping to restaurants to daycare to pool to transit to parks to family. Janice will be moving rooms in September as well as aging out of Infant Developement. We also have alot of things coming up in September and not just birthdays.

Janice seems to enjoy "helping", bubbles, play dough, finger painting, and flipping through books. I wouldn't put it past her to be reading but she hasn't given me any signs of that. She is so independent and confident, she is always surprising me. Although she still only has about 2 friends and 5 cousins that she gets to do stuff with she is still a happy and smart angel.

Lesson learned make sure Janice's board is moved away from the balcony door before entering, especially when I am caring her. I stepped on it and did the splits; Janice is perfectly fine not even a bump but mommy twisted her knee and bruised her shin.

New Home

This Sunday Kevin, Janice and I moved into our new home in library square. We were further surprised by the view we got of the Kamloops Canada Day fireworks.  With the help of four friends and an aunt we got everything but the small stuff from my grandparent's basement moved in one day. We only have about four boxes left to unpack. 

Unfortunately the move was followed by my loosing my voice. I saw the doctor today he said it was nothing serious just needs some time to let the swelling around the vocal cords go down. 

It is such a nice place and we are so happy. Everyone is commenting on our nice big bedroom plus en-suite. The en-suite has shower, separate tub, toilet and sink it is a deep soaker tub and the way we have the bedroom set up you can watch t.v. while you soak. Janice has a good size room there is lots of closet space throughout. High Efficiency front loading washer and dryer included and all appliances stainless steel from microwave, dishwasher, fridge, and stove.  We also have the den set up as an office space. I think we will be really happy hear.

Current situation

I am feeling pretty stressed right now with the daunting task of moving July 1st. There is also my grandma's continued views on my relationship as well as other things. I understand that she only wants to help but sometimes I find her a little crushing. The other day she made it sound like there was a chance that Janice might get hurt by a relative because they got a little impatient with her while trying to put on her skate gloves. I really don't need any additional stress.

Work is going great I am getting a nice amount of shifts and my numbers are good so I have no complaints there. Waiting on letters about Janice to send in with a rent subsidy request for our new place. It would be tight without help but do able, so I really hope that there aren't any hiccups with the subsidy request like there is with Janice's daycare subsidy.

Janice is three months behind on our daycare subsidy due to government bullshit. Apparently they updated 30 year old systems and are now taking unbearably long time to process applications and renewals, so much to the point where some daycares are closing because they can't afford to wait for the money. It is rediculous.

http://www.kamloopsnews.ca/article/20120601/KAMLOOPS0101/120609970/0/kamloops/slow-govt-subsidy-payments-frustrate-day-cares

My one day off in five and I am sitting here writing a blog about my current stressors. I wish I had someone I could talk to. I feel very much alone recently and the situations are not helping. Family are pushing me to buy instead of rent when I don't even know what we need for Janice in a house. I personally feel I am doing the right thing in waiting at least another year so that we can better assess Janice's needs in a home before buying. Also we have no down payment. I know they are just trying to help but sometimes help can be a hindrance. I wish I knew what to do. But I guess this is life and I will keep plugging along doing the best I can.

Lots on the mind

There is another going on but some of it isn't my place to say anything about. There is some good and some bad, mostly just to much on my mind. Between the happiness at Janice going on the potty to mom's news. Then there was the news from Van (that I talked about last time). My brain feels overloaded.

We are also trying to get out on our own again. There is a really nice place we are looking into. Plus we are still waiting on Janice's chair. 

Urology Testing at BCCH

I always find the trips to Vancouver Children’s hospital exhausting, especially when I have to be at the hospital for 630am. Janice has been fasting since midnight and she knows where we are, I try to keep her distracted but not always an easy task with nurses coming in and out of the room. Then she wants me to hold her as the nurses surround her to put in her iv and give her the anesthesia. She falls asleep almost instantly but I don’t want to leave as her cries still echo in my ears.

The first procedure went well although the doctor commented that her “anatomy is unique down there”; the doctors seem to love using that word with her “Unique”.  She is in recovery now and then she has another test this afternoon which they hope will shine some light on what is going with her bladder, kidney, and the rest of that region.

I feel anxious as I wait for her to wake. The doctor just came and gave us some baffling information: apparently they are still not sure if she has one kidney or a conjoined kidney; but they have discovered that she has TWO uteruses. This has confused and overloaded my brain on the ramifications and what this means for her in the future. Let alone how to tell her dad , his mom (who drove us down) offered to let him know and find out his thoughts which I am happy to let her as I don’t know what to say. Part of me feels like the day she was born and we found out about her unique condition, we were speechless neither of us knew what to say to the other as we both dealt with our grief over the hand that we had to deal with. This is not a grief more of uncertainty of what it means but the confusion of what to do and say is still the same.

We have been back at the hotel since about 130pm this afternoon. Mommy went out for coffee with a friend while Janice and Grandma relaxed and played in the room. Janice is back to her old self which mommy is happy to see. 

Trial wheelchair

 Janice only got the chair on Tuesday and yesterday she spent almost the whole day in her chair and even fell asleep in it. Today though, I feel like such a mean mother today. We were told that the chair might have to go back but it got confirmed this morning :( 

I took Janice to try out her chair at daycare. She hadn't been there for a few weeks and so it was more crying and mommy cuddling then trying it out but the size of the chair worked well for the room. The kids were interested so that might be a problem if they try to push Janice around. Unfortunately unlike her board the chair is just for her and we don't want the kids to play with it.

We went up for a quick visit to work, although we missed meeting a friend for coffee due to unable to get a hold of said friend.

Then stopped at seating clinic, unscheduled, to mention something about the chair which is when we were told that they needed it back but would order her one. They took pictures and notes so they could get it set up properly for her. She wheeled away from them and then wanted up lol. They were just happy to see that she was comfortable using the wheelchair.  Then when we were leaving and I was carrying her she noticed no one was bringing her chair and pointed back to the room and asked, "Dah?" (basic translation - what? chair?)

I explained "Chair get fixed" Which isn't a lye but I still feel bad cause she really liked the chair and now she has to wait at least a month for "HER" Chair. :( 

But at least I know she likes it and will use it she was doing really well for only having it about 48 hours. Janice could make it go forward and backward with minimal difficulty and was learning how to turn but that was the more difficult one, I think for anyone to get the hang of. 

Hopefully they will have a chair for her soon they are aiming for our Vancouver trip in May but we will see...

Janice's Wheelchair

Although I was anxious about Janice getting her first wheelchair. It seems it was for naught as she seems to be taking to it like a fish to water. She got it Tuesday morning and was making it move forward and backward on her own within hours.

This morning she tried a mild turn which she needed a little help when she got stuck on some toys. She spent most of the day in her chair and even fell asleep in it. I am pleasantly surprised and happy with how well she is taking to the wheelchair.

Another Death

I didn't think I would feel the death like this until I was older but this month... seems like there is a lot of death. The first week of March ended with my Uncle Dick passing away. Then my Uncle Earl isn't doing that well and this morning I got a call from my Aunt Lil that my Aunt Margarite passed away this morning.  I mean don't get me wrong they have all lived long lives and were in their 70's-90's.

I wish I understood why things happen but I guess that would take the fun out of living.
Somethings seem to just come out of the blue and other times you can see it coming from miles away.
It is sad and I feel lost and sometimes I wonder why things happen the way they do. I know this is a short blog but for some reason I seem to be out of words tonight.

ReStart

Sunday I decided I needed a restart. I have gotten back on doing my blood sugars 2-3 times a day and I started working out a minimum of 5 minutes a day. Today I took a walk with my mother and Janice around MacArthur Island and am not sure my legs are up to doing anything else work out wise tonight. I feel kinda bad about not doing anything besides the walk but the night is still young we will see ... maybe I will do my ipod daily ab work out.

I am packed for Vancouver. We leave on Tuesday for two nights and three days. It feels like I just got back and am going down again. At least I get a month off after this. No trip in April. However I am back down in May for urology to do some test that she is finally big enough for. That trip is happening the day before my bff's wedding so it isn't going to be that bad but it is a little exhausting going down almost every month for 6 months straight.

Janice is doing good though. She caught a little cough but it is gone after a week. She has missed about two weeks of daycare this month which I am not happy about but her health comes first. Spring is here and I find that I get down in the spring because of all the sports going on and Janice won't be able to do many of them and it can be depressing. I keep trying to come up with activities that she CAN do. She has the CAN DO spirit but there are still a lot of things that she just physically can't do. But Janice is doing everything that she can and is so positive I feel extremely lucky that she is my little angel.

Everything at once

I find myself feeling overwhelmed. Janice is finally home and out of the hospital. The last few days were to get her off the oxygen. But she skateboard and in the playroom.

Then this afternoon my grandma (Popo) got an upsetting call her younger brother was on life-support and that she should come down soon. He went into the hospital about a week ago from what I was told for pnemonia and because of an underlying disease he has had all his life it became too much for his body. I have spent several hours on the computer looking up prices and calling family and trying to arrange the trip for Popo.

She is very sad as Uncle Dicky was one of her closer siblings and she loved him very much. I feel at a loss for words on what else I can say or do to help her. I wish I could take them (my grandparents) down myself but I am tapped out between the trip to Vancouver BC Children's Hospital, and the stay in Royal Inland Hospital.

I am happy that Janice is feeling better besides a residual cough. But I also feel sad about the situation and pending death of my uncle. He was an inspiration. Despite a crippling disease he never let it keep him down. He always had a smile for me and when Janice was born he looked so proud. The wheel chair never held him back from anything he wanted to do.

You will be missed Uncle Dicky. We loved you and will live forever in our hearts.

Royal Inland stay

It was about 11pm Sundays night when Popo called down to me to take Janice up to the hospital. It made for an exhausting night complete with blood tests, iv's, and x -rays. Although I did find out something,  the reason they never say she has pnemonia is because Janice's hernia which is intestine covers the lower part or her lung.

They did mention that they could hear something in her lungs when we were admired. Dr. Van Dyke said this morning the lungs sound clear. Janice is still on a very minimal amount of oxygen tonight and her cough still sounds congested but I am optimistic that we will be heading home either tomorrow or the day after.

She is currently sleeping contently on my cot by her choice forcing me to use her hospital bed which in my opinion more comfortable but Janice seems to prefer the cot lollipop.
I hate these hospital stays but if they keep Janice healthy that is all that matters. I feel bad for missing 2 of my 3 shifts this week. But just as long as Janice feels and gets better, that is all that matters.

Vancouver trip and looking back

Well the trip to Vancouver went well. Mom went with me.She had not been down since Janice was born. First day we arrived around 3pm got into the hotel and went to go see mom's cousin Claire's son Noah, this entailed walking from Heather street to Commercial drive. Day Two we went by bus to Oakridge Center before heading to Janice's appointment at BC Children's hospital.

It was a typical appointment, they weighed and measured her, took her blood pressure, all the usual. Dr. Dan (Metzger) found the dispute one hormone being low, but in range and her length (arm span) matched her weight; which means she is growing just fine, just at a little slow but at her own rate.

While at the appointment it came up about how because of the additional water I must have been huge. It was during this discussion that my mom mentioned that I had been bigger than she had expected even with me being diabetic and she had added that I had even been bigger than a woman carrying triplets. This discussion makes me feel like I should have done something more. I got so big so fast and there were several times I thought something was off and let people talk me into comfort. My even more clumsiness, most likely due to the additional fluid. The fact that everyone kept thinking it was multiples. Was I a bad mom for missing it? Should I have done something differently?
Since then I have been feeling inadequate.

After the appointment we went back to the hotel to drop our shopping off before heading to China town, then to gas town and the Old Spaghetti Factory for supper with the cousins on Popo's side: Mike, Mitch, and Mark. Then back to the hotel for the night and heading home early the next morning. Slow and steady was the trip as the first leg was snowing but after passing the summit it was more rain and we were home by 4pm.

Back down for March 29th.
That is all for now.

Show of Hearts 2012

Well. the Variety Show of Hearts telethon was on this weekend. Although Janice wasn't on it there were alot of well deserving families and children on this year. There was a few teens that had been injured during sports that needed the help of Variety the Children's Charity. It is always amazing the things that Variety is able to do for those in need.

I have my own little "I Can" little girl. Janice shows me on a daily basis that she isn't going to let anything stop her. Whether it is going up and down stairs; booting around on her skateboard; climbing up and down the fireplace and couches; or just her optimistic smile she always makes me smile.

I was hoping this year they would get over 8 million but this year they got less then last years total. They only got about 6.753 million. Last year they got close to 7.7 if I recall correctly. Either way 6 million is still a lot of money and will help a lot of kids and families. They also told about the opening of Janeece place in Victoria. A home away from home for families getting treatment in Victoria.

CFJC TV News segment

Well, my father decided to do something for his grand-daughter and sent out a dvd and letter about her and her accomplishments with her skateboard. We got a reply from the local TV station and yesterday they came by to interview us. It was cute Janice fell asleep on me during the interview and so they weren't able to get much of her playing because we had to wake her up. But the segment aired on 4 of the news casts between yesterday and today and the segment is also on their website:  http://cfjctv.com/story.php?id=7098


I find myself tearing up each time I see it. It is their lead in to the Variety Club show of Hearts which starts tomorrow evening and goes the next 23 hours.


In about a week and a half I will be heading down to vancouver to see an endocrinologist about Janice's hormone levels. Hopefully it will go better then I feel the doctors expect.

Differences of view

Last night I found myself feeling depressed, ugly and wondering if I was wanted. Almost crying myself to sleep between the pain of my decomposing tooth and a bout of depression. This morning I still felt down and my tooth seemed to hurt more then yesterday, I have spent the whole day taking meds and laying down bundled up kind of moping. 


Although due to my low emotion and pain my feelings from last night have been pushed down by the caring TLC that I have received. Unexpectedly I have been served lunch in bed and well couch side service.


Tonight I have a Christmas party at Ora. I hope I am feeling up to going. It is also Chinese New Years so I am hoping for Chinese. And yes Christmas party as it is the busiest time of year the party was moved to January.  I know my blogging is random but I type what is on my mind.  Last night if I was not so lazy about getting out of bed you probably would be reading a more interesting although depressing blog. 


I enjoyed watch a new show last night called "Switched at Birth". I am currently enjoying some NCIS while Janice sleeps. I love my little girl is so precious and seeing her can turn my whole day around.  Yesterday I got up early to attend a future leaders meeting, the first of twelve. It was very interesting and although I do have some homework I am hoping to get my printer working so I can type up a good copy. 


I purchased the as seen on TV "Heal-tastic" which is actually working well for a single treatment I am hoping it holds up. I am considering getting a curling iron, I saw an interesting hair accessory tool that is an "as seen on tv" 


When I was finding the as seen on TV items I also found out that when Target takes over Zellers the employees are getting laid off. That makes me wonder what is going to happen to all those employees, it makes me feel like it is another convergys. So many people out of work.  I mean there are people that leave a job for good reasons or bad reasons but by their own choice. Then there is the people that are forced to leave a job for reasons they don't control. 


I think I have said enough for today. I am going to sign off for now.

Filling in the last two years

After Janice was born and a month long stay in BC Children's hospital we returned to our home in the interior. Our two bedroom apartment became a wonderful home for our small 4 member family; Kevin, Janice, Lia (our cat) and I. Although annual visits to Vancouver for Janice every three to four months made our budget a bit short. Eventually working fast-food and taking time off for medical appointments caused us to make a big decision, November 2010 we had to move in with my grandparents.

Another problem that arose was I seemed unable to set up any play dates for Janice which made me have to consider daycare even though we didn't need the additional care, no it was for social skills for Janice. She seems to love it now after almost 9 months. Her language skills are also growing with the interaction with the other children in her day care. So with the help of my grandparents and day care 2 days a week, I am able to work a flexible schedule and Janice is flourishing.

This November I got a Christmas job working as a cashier at a retail outlet that I enjoyed the environment and climate way better than the job I took due to lack of options after maternity leave. The job I was working at when I got pregnant closed down, and my EI got eaten up with maternity leave I had to take the first thing that came my way which was fast food. However after some issues with management and their reaction to some complications with my daughter I was extatic to move on to another job that was more understanding and had more reliable hours.

I was told a week and a half ago that they were keeping me on and I was extremely happy. So now it is just a matter of getting some savings and a properly designed home for Janice to grow up in; although I am sure my grandparents don't mind us bunking here I don't like having to rely on them.

In February we have another trip to vancouver to see an endocrinologist about Janice's hormone levels. She is on the small side for her age and after over a year of being hounded about her weight they tested her hormone levels only to find that some were on the low side and thus our up coming trip.

First blog post

Welcome to my blog. I am a 27 year old mother of a 28 month old with spina bifida. She was a surprise in a lot of ways. She has become my angel of light. Janice is a very happy go lucky girl with beautiful blonde hair and blue eyes. Everyone said that her eyes would change but it was her hair that changed from brown to blonde within the first 6 months, despite my being primarily asian and native.

She has been an inspiration and a heart thief from birth. Everyone that meets her falls in love with her. When she was born we were shocked to find out that she had spina bifida and within 8 hours of her birth was flown down to BC Children's hospital. I had to wait til the following morning to follow her down. Before I had even seen her I was approached by one of her doctors and was told how they needed consent to do surgery to close up the hole in her back otherwise she could die from infection, it was one of the scariest moments of my life.
We soon were told that apart from her obvious leg malformations she also had a single horseshoe kidney, small high pressure blatter, and she had a hernia on her right side.

She did not like any of the traditional mobility devices brought in by her physio. I found a child size skateboard about 6 months ago that we have since had modified for her. She loves racing around on it. We had to put a g-tube in October 2010 and developed a bed sore on her back from being on her back after the surgery. We finally just got the bed sore cleared up.