A Lengthy Answer to the question, How's Luke doing?

I've had many people ask me lately how Luke is doing and to be honest with you that is a challenging question to answer. Being the mostly positive person that I usually am I want to say he's doing okay, but then the part of me that tries to be honest to a fault wants to scream, NO he's doing terrible. For you see ever since July when Luke had the Baclafen pump put in he's been doing terrible. Not every day terrible but most days terrible. So you may be saying what does terrible look like?? Terrible means needing extra oxygen almost every single day and just about every single minute of every day since July. He has not had a sputum culture come back without showing up pneumonia and most of the time it's pneumonia along with all kinds of other nasty bugs to keep it company. He's had many, way to many Dr. visits to his Psyatrist to adjust his baclafen pump, to his Pulmonologist to be put on another antibiotic, to his pediatrician for more blood work, to his . . . you get the picture. 

Luke, Lily and I on Amy and Lance's wedding day.

Another new issue that Luke is having to deal with is the fact that now that he has the new pump he also has major problems with his bowels, never before have we had those problems to deal with, so we've added some natural supplements to get things moving in the right direction. Having that problem has caused him to throw up daily at least once a day if not more often, which means we have to change at least his shirt, sometimes his pants often through out the day, along with washing the clothes we use for his drooling and all his bedding most days makes for a lot more laundry to be done.

Uncle Luke watching over Penelope:-)

Another issue Luke has had since putting in the pump is that we've had him stop breathing at nights. Some nights have been so stressful it makes you just about want to throw up and then to try to go to sleep after that happens is so hard. I understand that we need to trust God with our children and with our lives but just knowing that if I fall asleep I may not hear his alarm which could mean I could wake up to Luke not being there anymore. Which I'm sadden to say has happened to two precious children recently within the Near drowning community. Dawn who went on the mom's retreat lost her precious son Collin who was 12 years old last month and than just a week later, Gina lost her sweet little Madison who was only 10 years old, they both died in their sleep. My heart breaks for the loss of these precious children and I can't begin to imagine the loss and pain their mom's and families are feeling.

Luke loves looking at the Art mural while waiting for one of his many Dr. appointments at Mary Bridge Health Center

Then to top off all the challenges we've been having with Luke add to that the fact that I hurt by back in October. It was so bad that I couldn't walk or move without being in horrible pain. I've dealt with a bad back for many years now but nothing like this, I had constant pins and needles going down my leg and was told that I wouldn't be able to pick up Luke until it got better. I went in for a MRI and found out I had 4 bulging disks that were sitting on a nerve in my back causing my leg to be numb at all times with constant pain. As most of you know sleeping has always been a challenge for me, but during that time there was no relief to sleep, I was on constant medications just so I could keep going. I'm thankful to say that today was the first time since my injury that I could actually pick up Luke. I'm getting stronger everyday and I'm almost to the point that I can now walk up steps again without the help of having to use the hand rail to get me up them. I still feel the pins and needles in my leg but it's so much better.

The kids and I were blessed by our friends with tickets to go see Disney on Ice, thank you Hartung Family we had a great time!

One positive thing that has come out of me not being able to pick up Luke is the fact that I called the Developmentally Disabled Department of Washington and they have decided that we may qualify for a waiver, which means we may be able to finally get some much needed respite hours. We actually qualified for this waiver many years ago, but we've been on a waiting list to get the benefits, but because of our crisis situation they may be able to get us on it sooner. To be honest with you I have mixed emotions about getting help to come into our home for you see as much as I know that I need the help it's not always easy having people in your home all the time. Please pray that God will direct us and give us the wisdom we need to know what we need.

Zeke's 12th Birthday Party

We could go on and on with more news, but here's just a few more things to share; Monday we got the results of Luke's recent back x-ray showing that now he has a 34 degree curve of his spine, showing that his scoliosis is getting worse. Also the fact that the pump that we thought would help to bend his legs and give him relief from the constant muscle tightness that he lives with is not the answer we hoped for, therefore now who knows what kind of help we will be offered for his legs. Or the huge fact that his lungs are completely trashed, with the pneumonia he's been dealing with along with the fact that his right lung has been collasped for years which is taking a toll on other area's of his life. Keeping our eyes on Jesus is our only hope, because everytime I think about what all this means it brings tears to my eyes, which happens just about daily lately. 

Aunty Lily with her neice Abigail visiting Santa Claus at the Festival of Tree's

I'm so thankful everytime someone comes up to me and tells me they are praying for Luke and our family, so very thankful everytime someone comments on one of the post that I put out there on facebook saying that they are praying, for I know this is the only thing that keeps us going. God is our only hope and we will not stop trusting in HIM.

Love in Christ,
Luke's Mommy Sue  

  

Mom's Retreat 2012 Update in Pictures

Our mom's retreat this year was absolutely amazing as you can see from the pictures I have posted below. What a true gift from God to bless us with this time to laugh together, cry together, share our hearts, our dreams and our hurts with each other, play together, eat together, some of us prayed together, all had a great time together:-)

Our annual Mom's retreat photo taken in front of the Winery at Suncadia.  Sabine, Teresa, Tiffany, Julie, Shawna, Kahne, Peggy, Gina, Joanna, Dawn, Jill Annie, Amy, Kehau, Lindsey, Erin, Janet, Lisa and myself.

Sue, Lindsey, Kehau and Erin above Ecola Beach, I think it was the most beautiful day that I've ever see at that beach that day. What a gift from God!!

Erin had never been to the Pacific Ocean before so I picked her up along with Kehau and Lindsey at Seatac Airport. We then drove 4 hours to Cannon Beach. We spent some time on a short hike at Ecola State Park and then headed down to Cannon Beach for a walk on the beach and to eat dinner before taking off to spend the night in Portland, OR. Erin's brother lives in Portland so he picked her up at our hotel and she was able to go hear his band play that night, while the rest of us feel asleep after our very long day spent traveling.

It was the first time both Kehau and Lindsey had been to Cannon Beach. Kehau had never had to wear her shoes at the beach as she is from Hawaii, where as I hardly ever go barefoot at the beach because it's usually too cold:-)

Gina, Dawn, Janet, Lisa, Sabine and I went up into the Space Needle Friday night before heading out to Suncadia for the weekend.

The mom's who chose not to go to the Space Needle had dinner at the Crab Pot on Friday night, they had a great time down on the Seattle Waterfront.

 

 

This was our welcome to Tiffany's Home at Suncadia. Tiffany, Teresa and Annie carved these welcoming pumpkins for our arrival. Just one of the many wonderful surprises awaiting us for the weekend.

Fun times balancing our way across the little stream to get to the river.

Saturday morning we all got up early and took a hike down to a river in Suncadia. It was absolutely gorgeous, the weather was perfect and we all enjoyed our hike.

This is the one and only tattoo you will ever have the privelege to see on me. Thank you Annie for your amazing talent with the permanent markers, thankfully they weren't permanent:-)

Lindsey, Annie and myself down by the river.

Can you spot the mom's creeping up behind the log? Perfect place for a picture don't you think?

Here are all the mom's at the winery for lunch on Saturday afternoon. We had a great time enjoying a delicious lunch all the while discussing . . .

 

 

Tiffany had made up these beautiful cards with this question for us to discuss at lunch, what would you say if you were asked that question?

Kahne and Amy posing for a picture:-)

Dawn and Peggy enjoying their lunch

Silly mom's showing off just how strong they really are!

Fun times playing BUNCO

Surprise!! Tiffany surprised us with a fire pit that her and Ray had just built outside the back of their beautiful home. Each night we sat around the fire enjoying SMORES, laughing, talking and trying to stay warm on the those nippy fall nights.

I brought my coloring markers and lots of fun pages to color. Peggy, Jill and Dawn caught the coloring bug and decided they had so much fun coloring that they wanted to stop by a store on the way home to buy their own markers and coloring books.

Joanna, Tiffany and Annie loving every minute of time they had together:-)

After Annie, Sabine, Gina and I went to church we stopped by the meat shop in Cle Elum for some treats for them to take home to their families.

Annie, Janet and myself stopping for a picture at the fun Harvest Festival we went to on Sunday afternoon.

Janet on the bull

Sabine on the bull

Lindsey trying to stay on the bull, we were laughing so hard.

"Charlie's Angels" Aka Teresa, Annie and Tiffany arriving at the Harvest Festival

Gina and I at the fire on the last night, so sad to say good bye.