Monday, January 25, 2010

Final Version of Letter


On August 28, 2001 I recieved the Ultrasound that changed my life

I was nine months pregnant and loved every minute of it. I went in for a routine test to make sure that my baby was okay because he really wasn’t moving around a lot.

After it was all over the technician told me that my baby had spina bifida. I couldn’t believe it! I had taken folic acid for at least 6 months before I became pregnant to prevent having a baby with spina bifida. My husband and I were devastated and to make it all worse, my doctor was too busy to talk to us.

We couldn't wait. We called my sister-in-law who was a nurse at Sick Kids. “Saint Sheila” got us into the high risk pregnancy unit at Mount Sinai Hospital right away. The team explained the worst case scenario – my child would never walk unassisted, have no control of his bowels or bladder, have learning disabilities and suffer from hydrocephalus.

Two weeks later at 3:00 pm on September 11, 2001, Jacob Rayment was born. They took him away immediately and I didn’t get to see him until he was 2 hours old. The doctors said they would perform surgery the next morning to remove the lump on his back. Then they whisked him away again for further tests. When I finally got to see him that night, he was attached to all sorts of machines, but I was at last able to hold him. I was only allowed to spend a few minutes with him and that is when I first felt that overwhelming feeling of love that I had always heard about when you become a mother.

I didn’t get any sleep that night as I was worrying about this small helpless infant about to go through major surgery. The next morning, after anxiously waiting in the recovery room for 4 hours, his neurosurgeon came out and explained that Jake would be able to walk without much assistance and probably would not have hydrocephalus. However, he would not be able to go to the bathroom normally and would have learning disabilities. It was still scary, but so much better than we were originally told.

The next week my husband and I spent 24 hours a day at Sick Kids learning how to cope with our special needs child. We had to learn how to change his dressing and how to catheterize this tiny infant. We got by on very little sleep on the small couch in Jake’s room. Finally on day 5 Jake was taken off of the equipment and for the first time we were able to really hold him. Jake was discharged 7 days after he was born and that is when the real fun began.


The first few days home were really difficult – as every new parent knows. On top of no sleep we worried about how we going to manage with this new creature. We had to catheterize Jake every 2 hours, chart his fluid intake and output, change his dressing, and go to many, many doctors’ appointments. All this and I was now freefalling into postpartum depression. It was insane! Most of it is still a total blur.

Thankfully, we were given information about the Spina Bifida and Hydrocephalus Association of Ontario (SB&H). They have made all the difference to us – they were a wonderful source of understanding, kindness, support and education. Because of the exceptional staff at SB&H, for the first time we knew we weren't alone and that maybe, just maybe, Jake was going to have a full and rewarding life.

SB&H helped us understand Jake’s condition, what we might expect in the future and how we could help Jake become the very best he can be. They gave us a crash course about the complications of spina bifida. Later on we received information for Jake’s teachers that gave them strategies for teaching children with the learning disabilities that come with the condition. The Association also provided books depicting children with wheelchairs, crutches or braces that are just like other kids. It was good for Jake to see spina bifida portrayed so honestly and positively. You won’t find these books in most libraries but SB&H made them available.

Being a parent of a child with spina bifida comes with many challenges. I worry every night that someone will make him feel bad because of his disability and I will not be able to protect him. I honestly would give up my life to prevent this from ever happening to him. I love him with all my heart!!!

Jacob is an incredibly funny and resourceful child. I am grateful every day for his birth. He loves karate and is becoming extremely confident at downhill skiing. I am so proud of how well he is doing. He is also a fantastic brother to his baby brother, Jesse.

I’m not sure what the future holds and the struggles that are ahead for his education, bowel/bladder issues, mobility and so much more. But, I do know that SB&H will always be there for us. That gives us hope and there is nothing more important than that.

The Association needs the help of donors like you to continue their good work. I urge you to support SB&H with your gift $40, $60, $80, $100, or whatever you can afford at this time. Consider joining the Monthly Giving Club. Monthly giving is easy and convenient for you and it provides the Association with stable, predictable funds. It also reduces administrative costs. For just $10 a month you can provide wonderful books for children like Jake that help them understand their condition.

Please give generously. Your thoughtful gift will ensure that SB&H will be there when it matters most. Your donation now will enable them to continue delivering support, guidance and information to everyone in the province living with spina bifida and/or hydrocephalus. Since they do not receive government funding, they depend upon caring friends such as you to touch countless lives through your donations.


Thank you for taking the first step.

Sincerely,

Jennifer Rayment.

P.S.Please help us make dreams come true for so many
Mothers like Jennifer. They wish for their child to be happy and healthy.
That’s what it’s all about. Your gift will help.

Wednesday, January 20, 2010

Just a few pictures of the boys to show off






 Jake 1st day of School 2009 (Grade 3)


Jake Baseball 2009






Halloween 2009 (The geeks)
Damn, not another reader in this house!


 Hmm -- glimpse of things to come

Jeff trying to trade Jake for the car

Damn, I am one hot looking kid - drool and all!
 

Tuesday, January 19, 2010

Jake's Sick Kids and MRI appointment

Mostly putting this post in as a reminder to contact Dr Dirk's office to get a summary of the results for Jake's medical file

Jake went in for an MRI just before Christmas. He did AMAZING for his first MRI while being awake -- trust me staying still for Jake is something that is extremely hard for him. He was a trooper and only moved his head a couple of times -- the rest of his body -- Perfectly still!!

We went back in January to get the results with his neurosurgeon Dr Dirks at Sick Kids. I will post the technical stuff when I get the notes, but basically Jake is doing great. He has a longer spinal cord than so called "Normal kids" and he has very little reflexes. Normal stuff for a kid with a defect at the L5 S1. And the best news -- we don't have to have an appointment with Dr Dirks for 2 year (unless there are any changes of course) That is fantastic -- not that seeing Dr Dirks is hard cuz he is sort of cute -- and I love to see Diane (unit secretary) but it is great news for Jake! Note to self -- get the frickin records from Dr Dirks!

Draft of direct mail letter that the SB&H asked me to write.

Hey

This is the draft copy of the letter that the SB&H wanted me to write. I will also post the final copy after Helen at the SB&H edits it. Also want to thank those who helped edit it and make it so much more coherent than my original rambling text. Would love to hear what you think

On August 28, 2001 I received the ultrasound that changed my life. Before this ultrasound I loved being pregnant. I didn’t have morning sickness, my hair was curly and I was just having a grand old time. I went in for a routine non-stress test because Jake really wasn’t moving around a lot – not that he moved around a lot before, but they just wanted to make sure he was okay.

During the test, the technician started to make me nervous by asking all sorts of weird questions about folic acid and other alarming questions. After it was all over the technician came out to tell me that my child has a Myelomeningocele (Spina Bifida) and that my doctor would speak with me soon. I couldn’t believe it. After all, I had taken folic acid for at least 6 months before I became pregnant and all the information I had seen said that would prevent me from having a child with Spina Bifida.My husband and I were devastated and to make it all worse, my doctor was too busy to talk to me and would call me in the morning.

Rather than wait, we called my sister-in-law, Sheila, who, at the time, was a nurse in the Urology department at Sick Kids. She was incredible and I will never be able to thank her enough for how much she helped us. Sheila was able to get us into the High Risk Pregnancy Unit at Mount Sinai right away and explained to us all she knew about spina bifida. The doctors and nurses in the Special Pregnancy unit were amazing. They explained what the worse case scenario was for Jake and how they were going to help us with everything. They explained everything in plain English and made sure we understood it all.

Two weeks later on September 11, 2001 at Mount Sinai, Jacob Rayment was born. He had surgery at Sick Kids to remove the bump on his back at 8:00 am the next morning. Dr. Dirks, his neurosurgeon did an awesome job and to this day still tells us how proud he is of the work he did on Jake.He explained that Jake's diagnosis was a lot better than they originally thought. We spent a week at Sick Kids hospital and than they sent us home. That’s when the real fun started.

The first few days home were hell – as every new parent knows. We just had a few extra worries on top of no sleep and what the hell are we doing with this new creature. We were taught to catheterize him every 2 hours, chart his intake and his output and to also change his dressing. We also had many doctors’ appointments at Sick Kids and Bloorview Kids Rehab. All this and I was now free falling into postpartum depression. It was insane! Most of it is still a total blur. However, the ambulatory nurse at Bloorview, Jenny Cooke, gave us some information on an association called the Spina Bifida and Hydrocephalus Association of Ontario (SBH). They have made all the difference to us. The SBH were a wonderful source of understanding, kindness, support and education. Because of the exceptional staff there, for the first time we knew we weren't alone and that maybe, just maybe, Jake was going to have a full and rewarding life. Well, at least much as he can expect with us as his parents!

Since that day, SB&H have helped us understand Jake’s condition, what we might expect in the future and how we can help Jake become the very best he could be. They gave us a crash course in Spina Bifida, Hydrocephalus, Attention Deficit Hyperactivity Disorder (ADHD), and all of the complications that go along with these conditions.The SB&H Resource Centre has also provided for us, and for Jake's teachers, a guide that educates teachers about spina bifida and hydrocephalus and gives them strategies for teaching children who have the types of learning disabilities that come with these conditions.

The SB&H also supports Kids on the Block, a puppet troupe that performs in schools to educate students about accepting disabilities and differences. The Kids on the Block "spina bifida" puppet helped to educate Jakes teachers and schoolmates about his disability, in a fun way. The SB&H also carries a wide range of children’s books where kids with wheelchairs, crutches or braces are portrayed just like other kids. It is good for Jake to see spina bifida portrayed so honestly and so positively. You probably won’t find these books in most libraries but SB&H makes them available to its members.

Being a parent of a child with spina bifida comes with many challenges. With Jake, his particular form of spina bifida (Lumosacral Myelodysplastic Lesion) has been both a blessing and a curse. Many children with spina bifida have a visible disability, but with Jake, at first glance, you cannot see an "obvious" disability.

The hardest part for Jake and us is that he is 8 and “still” wears a diaper because he has no sensation in his bowels and bladder and does not know when he has to go. Again, if he was in a wheelchair or wore braces, no one would ask us about it and he would not be teased about wearing a diaper.

I worry every night that eventually someone will make him feel bad because of his disability. We all know that without understanding and education, people can be cruel. He has been so lucky so far that no one has treated him badly, but I can’t help but worry that one day it will happen and I will not be able to protect him. I honestly would give up my life to prevent this from ever happening to him. Even though he drives me wacky (If you’re a mom with a kid with ADHD – you know what I mean) I love him with all my heart!!!

I’m not sure what the future holds and the struggles that are ahead for his education, bowel/bladder issues, mobility and so much more. But, I do know that the SB&H will always be there for us. That gives us hope and there is nothing more important than that.

Jacob is an incredibly funny and resourceful child. I am grateful every day for his birth. He loves karate and is becoming extremely confident at downhill skiing. I am so proud of how well he is doing. He is also a fantastic brother to his baby brother, Jesse. If you are interested in more about Jake and Spina Bifida check out: http://raymentspinabifida.blogspot.com/

For 33 years, SB&H has provided care, support, awareness and education through information for teachers and medical professionals, family support and peer-to-peer networking. They have a toll-free phone line and website that allows individuals across the province to seek support or information that they need, when they need it. The Association helps make the lives of people with spina bifida and hydrocephalus, and their families easier.

How can SB&H provide all of these programs and services? They do it with the help of donors like you. Please give as generously as you can.

We urge you to support SB&H with your gift of $35, $50, $75 or $100, or make a contribution through our Monthly Giving program.Your generosity will enable SB&H to give courage, strength and hope to other individuals and families dealing with the complex conditions of spina bifida and/or hydrocephalus.

Your support today could make all the difference in someone’s life.

Tuesday, January 12, 2010

Jake got his Brown belt in Karate

Since Dr Dirks was so impressed that Jake is doing well at Karate and Skiing, I thought I would post some pictures.  A lot of kids with Spina Bifida are unable to take part in most sports so this is a pretty big accomplishment for Jake. 


Here is a picture of Jake getting his brown belt in December of 2009

Another non Spina Bifida post

Sorry guys -- I know this isn't Spina Bifida related but I wanted to post the following.



http://www.bibliophilicbookblog.com/2009/12/ereader-anyone-you-choosei-knowagain.html

It is a great site and right now is sponsoring an excellent contest -- take a peak!  I would really like to win this contest but I wish you all good luck as well

Haven't posted anything in a while since I have been so busy -- but now going to try and post more