Friday, December 25, 2009

Sunday, December 20, 2009

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!!!

Monday, December 7, 2009

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.

Saturday, November 7, 2009

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.

Monday, October 19, 2009

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.

Sunday, October 18, 2009

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.

Sunday, October 11, 2009

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.