Sunday, October 30, 2011

All the leaves are brown......

Here we are, six months after Emmett recieved his first pair of KAFO's and he is already needing a new pair.  Our little man took a growth spurt!  He is enjoying his wheels, and already thinking about Christmas.  Both of the boys have already figured out how to make momma go grey. 
This is how they venture around the house......Liam sits on the footrest, and walks/runs Emmett around in the wheelchair....zooooooooooooooom (please ignore the date.....somehow the camera reset itself....).

I wonder how we've gotten this far already. There is a procedure that could change Emmett's way of life, his independance and control of his own functions.  The ACE Malone involves taking a piece of the appendix, attaching it to the bowel, thus allowing an opening (button) on the skin where a catheter and enema could be applied (no more need for going in the exit hole).  They do not do this procedure at our local children's hospital. He would need a referral.  I will be speaking to them tomorrow about this.  This will be something to look into in the next couple of years.  As the fleet enema's are just not "doing it".

On a serious note, this past year has been a combination of things for us, it's been stressful, and happy.  Emmett ended up the hospital last month with a severe case of Hand Foot and Mouth......which tells me his immune system still is compromised.  I was hoping the bad gastro bug that hit him this spring would be the end of the hospital stays for this year.  His brother had the same thing and his body did not react as Emmett's had.  It was frightening, 4 days of Vanco, fever, pain, and monitoring.

Saturday, May 7, 2011

My Local Celebrity

Walking for Emmett
Fundraiser has altruistic aim: help for toddler with spina bifida

Where do I begin? After all of the hesitation about privacy in our lives, I decided if it would benefit him, I could do it. 

The above articles opened my eyes to more than I had bargained for. I am so proud of our son, for all of the hard work, and the gifts he bestows on our family. Two very different articles....two very different reactions.

The Walking for Emmett article in the News made me so happy, so proud and so hopeful. The fact that the reporter's focus was on Emmett and his abilities, and who he is as a person has found me in complete awe of my child.

While the Advocate article made me sad.  It frustrated me how the words came out, how the focus was on the Spina Bifida, and not on Emmett.  I wonder if this is my fault, because I was nervous, and this was the first interview, I didn't want the focus to be on the negative. But for some reason.....when I read what I had said "“It’s very emotional for me, but it is so wonderful to have my friends help out like this,” she says. “Emmett’s father and I are very proud and we don’t like to ask for help because we don’t want to have to admit that we can’t look after our child. But we just can’t do it all on our own.”

I know I shouldn't have said so much.....there comes a point when too much information is deafening to the eyes.  I wish I could go back, I do not want people to feel sorry for Emmett, or our family. He is an amazing child, just as his brother is.  I hope that the article in The News illustrates this more clearly. 
If there is one thing I can take away from this experience it is how much disclosure results in good feedback. I do not want Emmett to read the Advocate article later in life and see what I saw: desperation, sadness, and frustration.  How do I erase what is already written?

Monday, April 11, 2011

Privacy Concerns on the internet?!? Bah!

I want to thank everyone who has helped our family at this time, from donating money, to allowing me to complain (like a madwoman), to lending your support, and helping coordinate means for us to make the most of his potential. I hope the smile on Emmett's face, and his proud words "I did it!" can be enough retribution at this time. I love you all.

That being said, there was a time in my life when I truly believed that I had no-one. May it be from ignorance, or fear of letting people in, whatever it was it was hard to trust (and I still have a hard time believing) that those around me were being honest with me and forth-coming. Sometimes, I still have that same fear, but this is not because of me, but I fear that those who are friendly and nice to me, are just doing so because they feel sorry for my son. I do not know when I became so cynical towards people, and I am sincerely trying to change that point of view. But where do we draw the line? I am so proud of my boys, especially of Emmett and all of his accomplishments. I think this applies more so to the infamous "Facebook Friend". People will try to add me just so they can look at pictures of Emmett (they have NEVER spoken to me, or have a friendship with me, nor does he know them). Am I supposed to share everything? It is a double-edged sword, especially when you are looking for funding assistance from people you do not know. This is why I made the Exceeding Limitations page on Facebook, for people who were curious about Emmett, so see for themselves. I am more than forthcoming to those who ask questions to me in public. But I believe our family still deserves some sort of privacy. Anyone who reads this....what is your take?

Wednesday, April 6, 2011

April Showers.....

Today we recieved some financially unappeasing information. Emmett's orthotics are going to cost us $1200 up front. Our Insurance company will not pay upfront, instead they will reimburse. We do not have the money for this. But these Orthotic devices are being made....his orthosist deserves to be paid for her hard work, and Emmett deserves the ability to stand up straight.

It's time to hold some major fundraising. While the money raised by myself on Facebook helped us buy Emmett's Nimbo walker, we still do not have the monies to cover the KAFO's.

Emmett was supposed to be born this week, he came three weeks early. His heart big and his soul wise. How do I fix this? Any money raised toward Emmett's leg orthotics, etc cannot be used for income tax purposes. It is time for me to start screaming from the rooftops.

Why is there no justice in this world. Someone once told me when you think positive thoughts, positive things will happen. I have been, oh how I have been. But for every good thing there comes a negative just to balance out the universe. These financial woes aren't going to over-shadow all of the good that is coming out of the orthotics, or walker, or wheelchair. The universe can go find some other sucker to maim. This momma bear is going to find a way.

Sunday, April 3, 2011

I'm walking!!!

The months of February, March, and now April have been productive months for our little hero.  Emmett went for his appointment at the end of February at the local Children's Hospital.  Where he saw the Orthopedic Surgeon, Physiotherapy, and Orthotics!  As well, he had an appointment with Seating for a wheelchair, where we discussed financing options. Luckily our insurance will cover 80% of the chair, 80% of his orthotics, and some other equipment costs every 5 years.  The remaining costs are being applied for through local charities, the money raised through the facebook Fundraiser (Once again! Thank you to all of you who contributed!! Emmett will have his new KAFO's and walker within the next two months).   Emmett got to choose his Orthotics designs (red on top, Thomas on the bottom), and the colors on his wheelchair (Toxic green and electric blue).   The wheelchair should be here during the summer months!  He is so excited, took him two seconds to figure out how to work his new wheels!

Emmett has also been accepted into the "Helping Hearts" program, a Canadian equivalent to the "Inspiration Through Art" in the US.  He will be going for pictures with a local photographer at the first of May!

Here is a video of Emmett using a loaned walker....

Thursday, February 3, 2011

Wednesday, February 2, 2011

Groundhog day...or what some were calling it. Snow-stradomaus....

Eventful day. Relaxing drive there and back with many interesting sights to see. (SB Clinic Appointment was a couple of hours away).   A few ditched cars, a couple of fender benders, a few slip-n-slides, and 0 visibility make for a wonderful trip! 

Emmett's ultrasound was ok. Nothing has changed with his bladder or kidneys for better or worse (which is good). He saw Ortho, Physio, and Orthotics all at the same time, all three were snapping shots of his excellent walking skills. He has done what ALL of them thought he NEVER would do.

He will be getting a long Knee Ankle Orthosis for his left leg and clubbed foot, and he will getting a short AFO for his right foot for support. He no longer needs the stander.  He has two walkers on loan from physio, one forward facing which he has been using all along, and the other supports him from behind (he took to this one immediately). We will be needing to purchase one in the future ($500-600). Going to see if SBHAof NS has some equipment.

 On March 2nd we will be returning to the Rehab for final fitting of his orthotics, and to visit Remedial Seating for consult on a wheelchair! We're so proud of him.  That's all for now.