Saturday, March 15, 2014

Luke turned 11 instead of going to heaven, we are grateful for another year! Here is a review in pictures of some of the high lights and challenges he experienced this past year

A lot has happened this past year. In April Luke got his baclafen pump out, the pump that nearly destroyed his life. The pump that was supposed to help with his muscle tone issues ended up being a nightmare because every time it was turned up it would cause horrible breathing problems and also a new problem to Luke, horrible constipation. After he got the pump out he no longer had constant pneumonia, his need for oxygen has been greatly reduced, even to the point that there are days he doesn't need extra oxygen.

Here's our family at the dedication for the new Hospital wing at Mary Bridge, I was honored to be asked to speak at the opening ceremonies. As you can see this is Luke before his knee surgery, his legs do not bend and he was on constant oxygen at that time.
Luke in his casts, in the Hyperbaric chamber, he had many dives this past summer to help with the healing of his leg wounds

In June Luke had massive knee surgery to reshape his femurs and to get his legs to bend once again, as they had not bent in 8 years. The Dr. was unsure of what to expect during that surgery and was pleasantly surprised to report to us that she was able to get a 90 degree bend in both legs, it far surpassed what she was expecting. The only downside to that surgery was the fact that his legs did not close up and we dealt with open wounds for two months, nothing is ever easy with Luke.

Here is a picture of Luke's open wound  from his knee surgery we dealt with many appointments to the wound clinic to get them to finally heal up, which took about two months.
Our family was blessed to be chosen to be part of the group from Mary Bridge Hospital that was given free tickets to a Mariners game, which included a special trip down to the field to meet the pitcher who donated the tickets.
Luke had so much fun with our family camping at Ike Kinswa state park.
Luke was having fun with his clown nose at the Lake Fair parade:-)

If you see tears in my eyes they are tears of joy, we had just received news from his Pulmonologist saying that Luke looked great and his lungs were sounding good, our first good report from that Dr. in many years. I'm thankful to say that was the first of many appointments this past year that we heard a good report.
Luke was doing so good at the beginning of December that we were able to take him to see Santa Claus at the Festival of Trees, first time to see Santa in years.

Our year ended with Luke getting the H1N1 flu along with pneumonia his first pneumonia since his pump was removed. That flu almost took his life once again, on January 1st he stopped breathing and went into convulsions, I was asked 4 different times that night if we were ready to let him go, I told them no put him on the ventilator. Thankfully once they vented him he's was back looking around the room in just a few minutes.
Luke finally awake and alert after his near death experience on January 1st when he stopped breathing and had to be put on a ventilator for two days.
First time Luke slept after being awake for 30 straight hours after getting off the ventilator, his body went into extreme stress with constant twitching and no sleeping for a few weeks after coming off the ventilator.
I took out the kids to lunch on Valentines day, what a blessing that Luke was doing so good he could join us on our outing.
Luke has learned how to drive this little car at PT, he controls it with his thumb on the little yellow pad. It's amazing to see how well he is keeping his head up and seeming to be aware of his ability to make it go and stop.
Luke celebrating his 11th Birthday
For the last few years on Luke's birthday we deliver thank you notes and cookies to his Dr.'s and to those that have kept him healthy and alive for another year. 
Here we are delivering cookies to the local firemen who transported Luke to the hospital on January 1st after we had to call 911. They were so happy to see Luke doing so good.
I believe in the power of prayer. God has blessed us with another year and we thank Him often for allowing Luke to come back to us once again. Luke has recently been dealing with major throwing up issues, we are hoping for some answers to what is causing the problem at his upcoming GI appointment.  We love Luke just the way he is, though we will never stop believing for a complete healing for Luke, if God can raise Luke from the dead, we believe nothing is impossible!!

1 comment:

A Joyful Chaos said...

Blessings to you and your family as you continue celebrating each new day God grants you with your son.