It's all in the Choices

Thats are next big attempt to incorporate into our regular schedules is CHOICES. Actually I'm attempting to make a significant effort to work on Alistair's communication skills in general. For the longest time we really put his mobility to the forefront but now with the rewarding changes in this department we need to also bring up his communication to speed. I'm sure I've said it a million times but its one thing to be told the importance and to even realize the importance of incorporating various techniques into Alistair's daily life but to actually do it is another thing. I find I realize after the fact I "should've" done this, that and whatever. A good example is working on the sign language. I remove Alistair's diaper and THEN realize I should've signed what I'm doing first.

We have some great advisors that work with us in regards to Alistair's communication. Right now we really want to make an effort in getting Alistair aware of whats happening before we do it to him. ie changing his diaper, putting on his glasses, picking him up, etc.... We also are finding ways to give him choices. So for lunch today we had a drink and some food. He had to touch the bottle or the spoon to let me know what he wanted. Its quite the process as I think it takes a bit for his brain to tell his body what he wants it to do. But he seemed to get great enjoyment out of making his own choices. You know sometimes I find it hard to know if I'm just seeing what I want to see (ie accomplishments) or if they are truly occuring. Anyhow, the whole plan is eventually we could hopefully resort to pictures and buttons that he could push so he can communicate his needs especially if the verbal aspect never comes to light.... He hasn't really progressed too much with the speech side of things. Yet with that I just have to mimic all the sounds he produces and we do manage to go back and forth quite a bit. But there hasn't been any babbling, or vowels produced past what he already has done. So thats the big challenge is just continuing on when one doesn't see the results they want week after week. However, with other aspects like his ability to stand with assistance or touch the bottle or spoon to indicate what he wants has taken months upon months. Yet we as a family have been rewarded with our perseverance.... I keep thinking of stroke victims and the motivation and need to persevere to receive those golden little changes in life that seem like a massive victory.

O and some great news. We just found out a couple of days ago that we are getting financial support from the Giving in Action Society towards a wheelchair accessible vehicle as well as all the materials to create a wheelchair accessible shower and front entrance. So hopefully by the end of March we will have our bathroom completed!

Grants, Financial Assistance and More!

So to my long long list of things to do I had added the need to apply for all sorts of grants, savings plans, and financial assitance in relation to Alistair having a disability. I'm so happy to say I've ALMOST got all these things applied for or underway... which is a BIG goal of mine before bambino numero dos comes along! Its amazing how much is out there for one to access. However, I know so many families that haven't accessed them due to the fact that their situation is so overwhelming that it just feels like it may tip things over the edge if they even attempt to get any of it underway. I have to admit you look at the checklist...... as they all have checklists of things that must get completed prior to sending the application on and it is overwhelming as it adds a whole other list of things one has to do in order to acquire this information...... ie make a doctors appt, go to the doc appt, requesting forms, returning and picking up the form....so ya it doesn't sound like a great deal unless you already feel maxed with all the other appts your squeezing in your day on top of the physio, speech, feeding issues, communication enhancement, etc that you work on on a daily basis and wonder why you are starting to feel a tad wiggy as you haven't gotten yourself out of the house! Anyhow I think I can say thanks to my nursing program as it taught me to prioritize and attack things one at a time in order to eventually accomplish finished tasks. Soooo after that long winded note to pat myself on the back I thought I'd share some of the things I've accessed and acquired as I find these things are not just laid out in front of you when you find out that your child can benefit from such things...it takes communicating with others in your similar situation, finding out what they have accessed or not, picking the brains of the professionals around you, and just a whole heck of a lot of digging...So if any of you are in the same boat as me perhaps some of these links and info I give you may help reduce the search and overwhelming thought of acquiring or at least applying for some of these extremely beneficial supports that may be available to you. I'll also share you my philosophy on some of it as I can basically justify absolutely anything if I can find a way to make it beneficial to me and get my butt motivated... so here we go....

• Giving In Action Society ~ http://givinginaction.ca/ This society provides grants to families living in the province of British Columbia. It enables families to stay together by addressing accessibility issues in their homes and communities. They will help with providing up to $25,000 towards a wheelchair accessible vehicle and up to $50,000 towards making your home accessible for your child- including lifts, elevators, ramps, flooring, and door widening.
• Melody from PG Surg Med ~ melody.chamberlain@pgsurgmed.com Melody has experience in modifying vehicles for increased accessibility and has a wealth of information in applying for funding, various modifications, and working with families to help them find a perfect fit for their needs. She serves everywhere North of 100 Mile House in BC.
• Registered Disability Savings Plan http://www.bmo.com/home/personal/banking/investments/disability-savings/rdsp-essentials This is a savings plan to help parents and others save for the long-term financial security of a person who is eligible for the disability tax credit. From my perspective this is one thing you should really put an effort into acquiring if you or your child is eligible as it is incredible how much money the government will put into the RDSP to match your funds. Basically, they will put up to $70,000 of Grant money in the account over the lifetime and $20,000 of Bonds over a life time. To open a RDSP, a person must be approved for the Disability Tax Credit, be a resident of Canada, have a Social Insurance Number, and be under the age of 60 years. Every major bank can open an RDSP and all have a different method to support you in doing so. For instance, at Scotiabank I found they had little if no information at the bank but there was a phone number to call and they could do the whole process over the phone. I attached the Bank of Montreal website as to me it provided the least complicated description/explanation of what the RDSP is, how it can grow, and what amounts the goverment will put into the account in relation to your income and financial input. I could go on forever about this plan but I'll let you read it. However, if you have questions let me know and I'll try to help simplify it for you as it can be a tad confusing at first. O and one last thing if your income is below a certain amount you don't have to put anything into the account and it will still grow!
• Endowment 150 Vancouver Foundation http://www.endowment150.ca/index.htm Many people with disabilities struggle to save for their future. To help those who want to save, Endowment 150 offers a one-time $150 gifts to holders of the Registered Disability Savings Plans (RDSP) in BC. You have to have the RDSP set up and then you have a very simple form to fill out and attach proof that you've put in $25 into the RDSP already and they'll send you a cheque to add to your growing RDSP.
• President's Choice Children's Charity http://www.presidentschoice.ca/LCLOnline/documents/PC_Childrens_Charity_form.pdf This charity is dedicated to helping children Canada wide who are physically or developmentally disabled. Their aim is to remove some of the obstacles that make everyday living extremely difficult and make it easier for the child or family to cope with the disability. They provide direct financial assistance in the purchase of mobility equipment,wheelchair accessible modifications, physical therapy and more. One main factor with this charity is you have to have a gross family income of less than $70,000. The maximum grant amount is $20,000 and I've heard but can not find it in writing anywhere that one can reapply to this Charity every five years where as many other charities have a once a lifetime clause.
• Variety Club http://www.variety.bc.ca/grants.htm Variety provides
  financial assistance for children who have special needs, with the costs of a
  wide range of equipment, therapies, educational, social and recreational
  programs.
• Toyota Mobility Assistance Program http://www.toyota.ca/cgi-bin/WebObjects/WWW.woa/wa/vp?vp=Home.AboutToyota.Mobility&language=english Helps cover the costs of installing adaptive driving aids or mobility assistance equipment, the Toyota Mobility Program offers up to a $1,000 allowance to physically-challenged customers who acquire a new or eligible Toyota vehicle.
• The Tiny Lights Foundation http://www.thetinylight.com/ This foundation is super wonderful and is a non profit organization that provides professional photography for children and families that have been faced with a life altering diagnoses. They provide families with the lasting memories through the amazing art of photography. With the help of many photographers throughout Canada they are able to provide families with photos they can share and help carry the many memories and it doesn't cost a penny. One thing to note with this foundation is they offer two photo sessions if your child is still in hospital. I have yet to take advantage of this great foundation but I've heard nothing but good things. The application process is simple. Your child must be under the age of 18. They contact you within a couple of weeks. Plus I've heard they do the photo shoot where you find it the most convenient ie. the park, your home, your front yard,.....

So a few of my opinions to go with all the above:

• Let the foundations and charities make the decision whether you deserve the support...don't assume you won't get it. I meet the most incredible moms out there whose children are higher needs yet they haven't applied as they "don't feel right" applying for some of these grants etc as "there are so many families worse off then us". Let the foundations and charities make that decision! The other thing is if you do acquire financial support for your kids and it allows you to provide them a better level of care which enhances their overall progression or provides your family unit with a greater level of support you are not only doing your child and family a huge favour but the community and tax payer also reap the benefits in the long run as you may reduce the "burden" on the health care system down the road.
• I find and have heard that families always like to put their children on a pedestal.....don't we all! When applying for a grant or charity this is not the time to tell them your childs absolute best abilities or accomplishments. I'm not saying to lie at all. I'm just saying you don't want to be writing your childs best accomplishment that may have occured once or twice a month yet there is no consistency to them. You want to tell your childs daily norms. We all love to say how perfect our children are but this is not the time!
• When attacking these forms, pretend that your going to get all the money you're applying for. Then divide that amount into the number of items you need to check off the list. For instance, if there are 10 items you must accomplish in order to get the grant in the mail and you could potentially get $20,000 from this grant. Then every time you check off something on that list you have potentially acquired $2,000 in support for your child. Now is that not incentive or what. Even if it takes you a year to complete the blooming application you're still doing really well!

Well if any of you are reading this and know of other great opportunites out there for us to access please share...even if its not for BC perhaps someone on the otherside of the country ...or another country will benefit from your posts. ~ Happy Hand Cramps! ~ Julie

Sleep Sleep PLEASE Sleep

As you can tell by the title of this one Alistair is not sleeping....or well he's sleeping BUT not when we want him to. Last night he got wingy at 7pm....we put him in bed and the sceaming till he pukes began. ACK..,....The little gaffer just winds himself up and up and up till he's vibrating and rolling fantically all over the bed. Then you pick him up and it takes anywhere from half an hour to several hours till he calms his little body down. So I'm thinking this little kidlet is being a normal little spoiled 2 and a bit year old but on top of it he gets this over stimmed nervous system that just is uncontrolled once he gets going. We've tried everything...let him cry: not a good option as he just gets totally out of control and then we're up all night trying to mellow him out and then he sleeps all day....we've done the melatonin thing: not sure if thats making it worse or what but I think it really just helps him go to sleep but thats fine until he wakes up several hours later crying his eyes out....we try exhausting him throughout the day but that doesn't change the end result....he eats like a tropper 99% of the time so his belly is full so he's content in that area...his bowels are in pretty good order now that we got totally wheat free....but ya...so typical day is wake at 4 am, get given a toy to play with till 630 am, eat by 7am, get tired and go to sleep about 9am till 11 or so...then lunch,...play, physio and all that good stuff, and by 630pm he eats super and gets tired and wingy...and then we go into unhappy mode : ( I also try the holding tightly to get him to dampen his nervous system and send a signal back to the brain to mellow out (PT told me about this) and it does help. Like last night at 1 in the morning he was getting out of control so up I got and just wrapped him around my belly and finally after 10 min or so he started to mellow...then back to bed and SCREAM SCREAM SCREAM.....So there is the issue of spoiled and special needs over stimmed nervous system and I just don't know what to do but let the little guy go with the flow until he grows out of it. This has been going on for 6 plus months and unfortunately he was starting to go down so much better and then his uncle played with him one night to Alistair's enjoyment but he got so wound up that he took me forever to mellow him and since then he's been a terrible sleeper again....So who knows! I just wish I could find that little switch to devert him back again....LUCKILY Jason does his fair share of being with Alistair in the middle of the night so we do give each other the reprieve we need. I just can't imagine having to take this all on by myself night after night....I think I'd snap...so ya I can't imagine how the single mamas do it all on their own...Anyhooo its 10 am and Alistair is contently sleepling...wish there was a magic wand out there....if you have any suggestions let me know! ~ The Ever Growing MAMA ~ Julie

Four Point

Alistair is so fun to watch right now as he's very motivated. All throughout the day we can find Alistair with his knees under his bum and using his head to attempt to get up on all fours.

That's when I run over and give him just a touch of assistance and viola up comes his head. Love it! The neatest part is that he really gets a kick out of himself in this position. He literally starts to giggle and smile with delight.Now a few times a day while we just leave him be we can turn around and find him doing it all by himself! Every few days he seems to gain a tad more strength to allow him to stay in this position just a little bit more. Its tricky catching him on camera as by the time you catch him and grab the camera he has done a good ol' face plant into the mats. But its just fantastic for us to see him accomplishing this. In the picture above I would say he was up in "four point" (as our PT calls it) for a good 8 seconds!

I have a video below showing his enjoyment of rolling over and gaining ability. I have some other videos too but I take them for too long and then they don't fit on the blog. You get some good giggles in this one though so enjoy...I DO!

Family, Food, and Fun!

Christmas this year was definitely about family, food, fun and mellowness! Having been to Vancouver on the 21st and 22nd and then coming home to work the night of the 23rd and 24th I was definitely a tad bagged Christmas morning. But as usual, it proved to be a wonderful relaxing time.....we just had to do things a tad differently as I couldn't keep my eyes open past 9am!

Jason was wonderful in getting Alistair all invovled in his present opening. However, Alistair seemed much more interested in the gift bags and the wrapping paper than anything else!

Since I had to have a snoozaroo realtively early Jason cooked brunch for all while I had a nap.

Then when I woke we had another session of xmas present opening.Then everyone was ready for a snoozaroo! :D
For numerous evenings including Christmas Day we sat down to hours of board games.

Over the month of December Alistair has decided to take another leap in his progression which is of course the best Christmas gift for this family. For one, he's become alot more cuddly but he is also increasing his eye contact substantially with us all which is really neat. On top of that he's become very keen to be on his tummy and get up on his elbows and hands. Although it lasts momentarily and he comes down on his head into the rubber mat he seems to keep wanting to go for more. In addition, we do a lot of standing/dancing together on a daily basis. He obviously loves it as he giggles endlessly. (Thats another thing he's into is the giggles!)Now the most recent thing he's doing is attempting to feed himself a bottle. Although its messy and he'll only do it with one hand the fact he's doing it is fabulous to us!

(the video below shows his fabulous mess!)
On top of the busy Christmas holiday season my cousin Jessica and her fiance Paul decided to tie the knot New Years Eve.

So we got to have an extra special New Years Eve with family and friends in Fort Saint John to bring in 2012. ~ Happy New Years Everyone. I hope it proves to be a great year for all! ~ Julie

NORMAL!!!!!!!

Well the 21st was a pretty heavy morning. I got myself down to Women's & Children's from PG here for my 945am ultrasound. Now of course the tech can't tell you want they are seeing but they can tell you what they are looking at. So I got to see the little bambio bouncing around and of course over anaylze why they are spending so much time looking at this, that, and whatever. Thankfully, I had to only wait until 1130 to see the genetic counsellor for the results but that just felt like the world slowed down and forgot to turn. Geeze thank goodness I didn't have to wait any longer than I did. So waiting patiently in the genetics room Patricia came to the door and said "I have great news" Well I just burst into tears. One doesn't realize how much pent up angst one has until these moments. I just couldn't stop crying to the point that I even had Patricia get all teary eyed. Anyhow I got ahold of myself and basically felt a tad in shock. But basically to the best of their ability they can tell me that this kidlet is going to be NORMAL. (thats my favorite word!) Plus to top it off I had received the quad screen blood results a week earlier and was told that came back all negative as well. That created another great melt down to the point the doc called me at home to make sure I knew negative results were a good thing! O course I had but again it was just a HUGE release. I've also always dealt with my pregancies with the idea of "Expect the worst and HOPE for the best" So ya life is incredibly lovely right now. I was so strung after receiving the ultrasound results that I felt I needed to get out and walk for a bit to blow off some steam. Luckily the weather was brilliant while I was down and I ended up walking from Women's and Children's to my buddies place right down by Stanley Park. On the way I bought myself fancy smancy drinks and goodies, window shopped, took in the environment and ended up walking a total of 6km. It was great. Since I had planned for a possible amniocentisis I didn't book my flight home till late the next day. Fortunately, we didn't end up needing to take that route and my buddy Kim and her family opened their doors to me and we hung outfor the rest of the time. We headed to Granville for some breakfast and in the afternoon we hit up all the fancy hotels and checked out their decorations. One of the hotels had a gingerbread house competition and it was truly stunning what people had created. Kim and Grady are standing in front of a life sized Gingerbread house. Yeppers thats real gingerbread! This gingerbread display was the most amazing of all. It was done by one of the culinary schools down in Vancouver and the detail to it all was stunning. It was quite bizzare to be down there at this time of year as the grass is green and the temp is hovering around zero while everyone is completely bundled in huge parkas! One fella even had a beaver hat on...not sure what this lot would do if it truly got cold! Anyhow this was just a lovely Christmas gift for our whole family and now we can proceed with this pregnancy as a NORMAL average pregnancy......JUST BEAUTIFUL! Have a wonderful Christmas everyone ~ Cheers Julie Jason, Alistair and bambino to be!

Santa's in Town

So we went to the mall and decided to get pics with Santa ...... it took a couple of takes and I wish I had a video rather than a still....Alistair literally tried to rip poor santa's beard off! It was quite funny but luckily Santa was quick on the draw and kept his beard to his face....not sure how it would've affected the other kidlets in line if he hadn't!
We also got to see Santa again at the Northern BC Children & Families Hearing Society Xmas Party. This time Alistair was enthralled by his slinky rather than Santa's beard!

For the past couple of years we've gone to the local store and bought a tree. We always missed the actual day of searching for our Charlie Brown tree so Jason and I went for a walk about on Mom's farm and found a couple of Christmas trees that would work perfectly. One for her home and the other for ours. Jason did all the physical work and I did the cheerleading.

Alistair is quite taken by all the shiny objects on the tree.

Alistair also loves reading the paper with Dad....actually he loves to attack the paper as Dad attempts to read it and Dad loves it!

Well I'm off to Vancouver tomorrow for another Ultrasound so hopefully all is well and we can experience the life of a plain old average pregnancy! Have a wonderful Christmas!~ Julie