Sunday, March 30, 2014

Here's The Truth, The Whole Truth and Nothing But The Truth - About My Life, The Good, The Bad, The Honest Truth

Here's Luke in one of the many waiting rooms he's been in lately as we try to figure out why he throws up all the time.
I've been thinking lately about my life, sometimes that can be a dangerous thing to do because I can begin to think about the "what if''s" and the "if only's." This blog post I will share with you some of my inner thoughts, it can be scary to share the truth because deep down inside I think if people only knew the real me, what would they think?? I've decided to share some of these thoughts because if I'm honest with myself I know that I'm not the only one who has thought the thoughts that I'm going to share, I'm just the crazy person who has decided to share them.

Both the "what if's" and the "if only's" are dangerous things to dwell on, just when you think you've overcome one of these nasty thoughts they come back to haunt you again in a weak moment, as least that's what happens to me.

The ugliest "what if" I deal with is the lie I tell myself at times, what if I never bought a pool to put in our backyard. You see I knew about the dangers of having a pool, a sister I never was able to meet drowned in a back yard pool before I was born. I grew up with a mom that was very watchful of us kids when she would take us to a lake or a pool to swim, because she lost a 17 month old daughter to a drowning accident. I never ever realized the agony of what my mom would go through to watch kids play in the water until I experienced the same nightmare of realizing my 17 month old son was found drown in our back yard pool. The major difference in our stories is that my son came back to life after his drowning accident, my mom's daughter did not. My mom has said to me numerous times over the past 9 1/2 years since Luke's accident, I'm not sure who has suffered more, me in losing my daughter or you in raising your fragile son. Some may think that's a callous thing to say, but I say it's an honest thing to admit. I'm thankful all the time that Luke did not stay dead that day, by the grace of God he came back to life, that said the suffering and pain he's been through is extremely hard to watch each and everyday since that fateful day.
Here's my mom on her 78th birthday
When I'm not thinking about the "what if's", I begin to think about the if only I had taken down our pool earlier. You see Gordy thought we should take down our pool since it was getting to the end of the summer, I said let's keep it up for another week because the weather had been so warm. If only I had listened to him, if only I had listened to him, if only I had listened to him . . . As you all know I didn't, it's a really hard "if only" to forgive myself for. You may be thinking haven't you had 9 1/2 years to forgive yourself and the answer is "yes" I have forgiven myself and have asked Gordy and Luke to forgive me too. I know that, that I know that I'm forgiven but living with proof of what I see on a daily basis of Luke's life it's something that I have to forgive myself for again and again. I'm sure you have something in your life that you need to forgive yourself for doing, I'm sure that you can relate, if not you're blessed indeed.

You may be saying what brought on the introspection of this part of your life right now?? I guess I've been thinking about how hard life is lately, I realize this is not a good thing to dwell on as it doesn't do anyone any good, especially me.

I said I was going to tell the truth today and that's what I'm doing. You see the plain truth is Luke is getting bigger and the bigger he get's the more challenging our life becomes. I've mentioned it before, but for you that don't know we live in a split level home, that means I have to carry Luke, who weighs 56 pounds, up 15 steps every time we come home or down 15 steps any time we go anywhere. People may wonder why we haven't moved yet, we did try a few years ago but our house didn't sale and the stress of having it on the market was too much.

Here's some more truth, our home will be paid off in about 6 years and we don't really want to add to our mortgage, the location of our home has also been a blessing with kids being able to walk to church right down the road, there are many Sundays they go by themselves because Gordy and I are dealing with Luke issues, also it's been a blessing living so close to my sister who has been a Godsend to help with Luke and with some of the kids schooling over the years. We've been talking seriously once again about moving, but the plain truth is we don't want too, but we know we need to and that is overwhelming to think about since our home is not even close to be put on the market. We are often sleep deprived and dealing with so many Luke issues lately we don't have the energy it takes to get a house ready to sell, somewhere we are going to need to find the umpiton to get it done!

Another challenging aspect of Luke getting bigger is that he's out grown his wheelchair, that doesn't seem like a big thing until we begin to think about getting him a new one. You see the one he's had the past few years has been easy to fit into the back of our van, it was similar to a big stroller, the new one that we are looking to get for Luke will be really heavy and not easy to break a apart to put in the van. We really need a accessible van, the stress of getting Luke in and out of the van is really hard on my back and then add to it the stress of lifting an even heavier wheel chair in and out of the van will be brutal. The challenge we have right now is that we don't want to borrow to buy a van and we won't have enough money for a few more years to purchase one. Here's some more honesty for you I don't want to spend $20,000 on a used van I would much rather spend that money on so many other things, in my mind I say, "just get over it Sue, it needs to happen," but like a spoiled brat, I don't want to buy a new van!!
Can you see the goose egg on my forehead. This happened a week ago as I was getting Luke into the van to go to a early morning appointment, the garage door handle broke and hit me in the head. I held ice on my head while I drove to the appt we couldn't be late!
Luke had a small colon and upper GI barium test, what normally takes about a hour for most people took him a little over 4 hours to complete. That day did a number on my back as I had to pick him up out of his chair up on to the table 14 times over those 4 hours.
This year began extremely hard with almost losing Luke on January 1st due to the flu and can I be honest to say it doesn't seem to be getting any easier. Just writing those words make me feel ungrateful for all the things that we have to be grateful for, like Luke is still with us and his oxygen needs have gotten so much better, that said he's thrown up almost every single day for the past two months and that has been extremely challenging to say the least. Taking him anywhere is almost impossible because you never know when he's going to completely throw up all over himself and everything around him. Today I decided since he was having a good morning I would take him and the kids to lunch this afternoon. No sooner had I put him in the van then he starting throwing up, the optimistic person that I am was thinking oh well he's done for now I'll just grab a clean jacket and some more clothes and go ahead with our lunch date. We get to the restaurant and right after we get our food he throws up again and this time it's projectile throw up all across the table and down all his clothes.  Poor Lily was sitting across from him and almost lost it, thankfully no one saw it happen, I cleaned up the the table and him as much as I could, we finished up eating and headed straight home to change him. This is how's it been for month's it's draining to say the least.
My good friend Yoli and I on a walk on a beautiful day:-)

My good friend Andrea on a very wet walk














I don't write this long book, oops, I mean post to make you feel sorry for me or my family, I just thought I would share with you some of the things that we've been experiencing lately. There are many things that I'm grateful for, like long walks with friends and Amy, Cindy, Nicole and Susan's help with Luke, when I dwell on the good things instead of the bad I can forget about the "what if's" and the "if only's" for a short time. Bottom line this life we live is never easy with Luke, but it's worth it, each time we see a smile or hear him laugh. I know with God's help and your amazing prayers I will be able to think less about the "what if's" and the "if only's," because if you have read this blog for a long time, you know my motto in life is I can do all things through Christ who gives me strength, Philippians 4:13.
The kids and I took our wonderful caregiver Susan, her husband Andrew and Andrew's brother Jacob on a daycation to the Olympic National Forest, we had a great day. Susan's husband is in the army and they have been  transferred to Alaska:-(.  Susan's last day was Friday, I've been in tears all week long, she has been so amazing with Luke, we are going to miss her.

Luke goes in tomorrow for a endoscopic procedure to see what is causing him to throw up all the time, I'm thankful to say we finally got in to see a new GI last week, since we lost his GI at the beginning of March. Please pray we get some answers and some solutions, we are desperate for him to stop throwing  up. Thank you.

I know this picture is bleary but I love it. I don't know if you can see Luke's expression but he was smiling and laughing at the kids the night they were playing in front of him. What a joy to have Luke in our home.

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!!



Tuesday, January 14, 2014

Luke is once again back in the hospital needing your prayers

I just wanted to give a quick update on Luke as I lie on the fold out couch in his hospital room. Luke's pediatrician and I decided after dealing with 19 straight days of fevers and then recently dealing with Luke's constant twitching and moaning in pain that he needed to be admitted into the hospital to figure out what is going on.

We got to the hospital around 5 pm on Monday evening and I was once again doubting that I made the right decision to bring him in since his fever was gone and he seemed to be doing a little better. They did an X-ray, bloodwork and swabbed his nose to try to get some answers to what is causing the fevers and pain. Thankfully his X-ray looked about the same, no worse, his bloodwork came back improved a little bit also. And then we finally got results from the nose swab late this afternoon, good news the flu is gone and no new viruses showed up, Praise God.

The Dr. decided that we should spend at least one more night here to see if we can get him more comfortable with no more grimacing and constant twitching. He's doing good tonight. His heart rate is lower than it's been in weeks, I'm pretty sure it's the tordahl they are giving for the  pain relief. He's still on quite a bit of oxygen so we need to get that weaned down.

Please pray that the constant moaning, twitching and pain he is showing to us will be gone and for his oxygen needs to get better. I had orginally planned to make Luke's food formula tomorrow since he is currently finishing up his last bit from the last batch we made. I'm thanking the Lord for Amy who volunteered to make his food along with our good friends Laura and Bonnie and of course with Isaiah and Zeke's to help get it done without me.

I'm so ready for Luke to be healthy again and for us to get home, please pray it happens soon!

Thank you,
Luke's Mommy Sue