MERRY CHRISTMAS!!!

Taylor's scar

A lot had happened in the last two months. Sorry I haven't posted much, I haven't had the time. Tay thinks he has the coolest scar ever so I'm posting a pic of it, I still think it's kinda creepy.
Life has pretty much gone back to normal other than a few adjustments and Tay being hungry all the time. Now that his stomach is not squished he has the appetite of a normal 14 yr. old boy. He wakes up every morning saying "I'm staaaaaaaaaarving"!! lol
For those of you that are following my blog that have boys with Duchenne's I want you to know that I wouldn't change a thing. If your considering surgery I would recommend it, but beware.... when they say recovery is going to be "hell" their not kidding, but it's all worth it in the end.
I hope all of you have a very MERRY CHRISTMAS AND HAPPY NEW YEAR!!!

The holidays

Thanksgiving Day at my Aunt Linda's

Trick or treating with his sister, best friend and his little cousin Kieden.


Sorry that it's been so long since I've posted, things have been crazy around here. Every day is getting better though. Tay went back to school a week a go today, he only goes half a day and will resume full days after Christmas break. He now sits in his chair all day. He doesn't complain of back pain hardly at all, just a little thigh and calf pain. I can't believe it's been 2 months since his surgery. I'm just glad were over the rough part, there were times I thought we would never get through it. Here are some pics from Halloween and Thanksgiving and one that was taken today.

Recovering

Taylor has been home from the hospital for about three weeks now, surgery was 5 weeks a go. It's been a long three weeks but he is improving every day. Now that his organs are back in there right place every morning he wakes up saying "I'm starving" I got my boy back ;)

He sits in his chair twice a day for about three hrs. and on some days 6 hrs. once a day. He has been a trooper. Here are some better before and after x rays.

Finally Home

Happy to be in his own bed

longest incision you will ever see.

Get well card from the youth in our ward

We finally made it home. Tay and I are so excited to sleep in our own beds, we almost forgot what it's like. It's good to be home. Here's a picture of his new spine and a few other pics.

Going home

Wow! It's hard to believe that I haven't posted for a week. It's been a long road but were finally going home tomorrow. We were told 7-10 days in the Hospital but because of a few set backs we ended up being here for 14 days. We spent a total of 7 days at Primary Children's and 7 days at Shriner's. Taylor is excited to be going home. I will post pictures of his new spine tomorrow.

Back and forth

happy to be out of bed

first time getting out of bed

visiting with the Young Women and Young Men in our ward

pulling faces with his best friend Nic

reaction to his new ipod touch from Lance

Happier boy

WOW! A lot has happened in the last five days. On the the 7th they moved him out of ICU then had to move him back the next day because his body could not tolerate any type of narcotic, it makes him sleep too deep. We had a little scare cause they couldn't get him to wake up for a long time. They actually had to give him a reversing agent a few times to wake him up, it reverses all the meds in his body. The poor thing can only have Tylenol and Toradol which is like ibuprofen but stronger. He's actually doing pretty well though. On a scale of 1-10 his pain level has been about a 5. Also he had a lot of fluid in his lungs and was getting to much C02. He had to wear a bi pap for two days straight now he only wears it when he's sleeping. On the 9th they got him out of bed and suspended in a sling for about 15 minutes, he said it felt good. They did the same thing on the 10th but not as long and he also sat in his chair for about 10 seconds a couple of times...sitting in his chair really hurt him. Today which is the 11th they are moving him back to the floor again and hopefully transferring to Shriner's Hospital tomorrow the 12...where we will be for about 4-5 days.

This is everything he's connected to.

Pictures of Tay

I wanted to show you how much better he is doing today compared to yesterday. He's a happy boy now that the breathing tube is out....he hated it. He's actually smiling in the top picture. He has 2 epidurals as part as his pain management, he's numb from the neck down. He also gets valium which helps with muscule spasms and toradol for pain.

Breathing tube removed

I had no idea until now that the hospital had computers we could use, oterwise I would have updated more often.
The surgery didn't actually start until about 10:30am (there was about an hr. and a half prior to that for getting him sedated and set up) but the incision didn't actually happen til about 1030. The doc came out about 4pm and told us everything went very and that Tay didn't ended up needing a blood transfusion and that they actually put some of his own blood back in, that was good news.
Jeff and I were the first to see him, they only allow two at a time in ICU and only immediate family. I will let you know soon when you all can come and visit.
Courtney and Amber (Taylor's step mom) were next to see him...it was very hard for them. It was very scary to see him the way he was (I will post pics later) Next was....hmmmmm....I dont remember. I think Jeff's parents then my grandma and Taylor's best friend Nic....poor little guy fell apart...he loves Tay so much. I hate watching other people cry cause it makes me cry more.
Taylor's blood pressure was very low several times yestaerday but it is doing so much better today. The only concern they have today is that his heart is beating a little too fast for his age...they are in the process of trying to figure out why. The good news is that they took the breathing tube out this morning and he is breathing on his own.
He keeps saying he's starving....poor little guy. It will be a while before he gets food. Well I better get back to him before he wakes up cause he doesn't like it when I'm not there.

Surgery is over

I wanted to let everyone know that surgery went very well and we hope to have him out of ICU tomorrow. I will let you when he can have visitors. Thank you all for your prayers.

first surgery update

We just got our first update. Taylor went under just fine. They just started the incision at about 10:35. We also found out that he will be in ICU today and tomorrow. So anyof you that were planning on visiting today don't plan on coming until Tuesady evening or Wednesday. I will keep you up updated. Here is a picture before he went in.

We have a surgery time...Monday 8:30-4:30 at Primary Children's, feel free to come and visit anytime after that. Your welcome to come and hang out with me while we wait too ;) We will be at Primary Children's the first three days ish then he will be transported to Shriner's Hospital for the remaining 7-10 days. If you plan to visit after three days make sure and call or text me first so I can tell you what Hospital to come to. If you need my number email me and I will give it to you. Once again, thank you for every one's love and support.
My email is mysterie76@hotmail.com

Spinal fusion

I thought this might help explain the surgery a little better. The rods will be connected to each side of his pelvic bone then run up most of his spine. He will still be able to bend at the neck and waist.

Surgical correction involves correcting the curve (although not all the way) and fusing the bones in the curve together. Bone grafts are laid across the exposed surface of each vertebra. These grafts will regenerate, grow into the bone, and fuse the vertebrae together. The bones are held in place with one or two metal rods held down with hooks and screws, which also helps to support the fusion of the vertebrae.

Taylor's spine

Sweet baby Taylor!

Oh my sweet baby boy! Where has the time gone?

Fast Sunday

Sunday September 27, 2009

I feel very blessed. I don't know anyone that didn't have Tay in their prayers today. I am amazed at the support system I have. My heart is very full. Thank you to all for having Taylor in your prayers this fast Sunday.

Tay's dog tags

I wanted to show everyone what our wonderful youth in our ward have put together for us all to wear. Thank you Sister Johnson and to all that participated. I love you guys!!!

My new favorite quote

Mortality is a period of testing, a time to prove ourselves worthy to return to the presence of our Heavenly Father. In order to be tested, we must sometimes face challenges and difficulties. At times there appears to be no light at the tunnel's end—no dawn to break the night's darkness. We feel surrounded by the pain of broken hearts, the disappointment of shattered dreams, and the despair of vanished hopes. We join in uttering the biblical plea 'Is there no balm in Gilead?' (Jeremiah 8:22). We are inclined to view our own personal misfortunes through the distorted prism of pessimism. We feel abandoned, heartbroken, alone. If you find yourself in such a situation, I plead with you to turn to our Heavenly Father in faith. He will lift you and guide you. He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face."

Thomas S. Monson, "Looking Back and Moving Forward," Ensign, May 2008

School pictures September 2009

School pictures came today. I do have to say......Jeff and I made two beautiful kids ;)

Getting organized

I've been trying to get all my pictures in photo albums, I feel like I'm nesting or something ;)
I guess I'm preparing for the worst and hoping for the best for Taylor's recovery. The doctor says recovery will be "hell" how do you prepare yourself for that?
This is one of my favorite pictures of Tay while he was still walking, he was 4 months shy of 5 years old.

Begining of a possible cold

Taylor's thinking on getting a head cold. ..YIKES!!! If he gets sick within 4 weeks of surgery (here we are at three) they we reschedule it for another time. It wouldn't be until after the New Year because it takes a few months to get in. The poor kid is hurting and needs to get it done soon. I just hope his congestion goes away within the next day or two.

Taylor is having surgery because his scoliosis is getting worse. They will be attaching metal rods to each side of his spine and connect them to his pelvic bone. The surgery is Oct 5th at Primary Children's. The surgery will take about 8 hrs. and he will be in the hospital for 10 days. Approximate recovery time at home is 2 months.

Taylor's surgery/blog

Hi, just starting this blog thing, we'll see how it goes!

Taylor is going to be having major back surgery in October and I thought this would be an easy way to keep everyone informed. I will try to post every time I hear anything new, so check back often!