Moving, moving and more moving to talk about

Earlier this week when I was on a walk, yes I said I went for a walk the first one since October 10th, I got to thinking about blogging about these past few weeks. Then I thought perhaps I should name the blog post moving because you see that was what I was doing, that's what I've been working on in our house the past few weeks moving rooms around and that's what Luke's digestive system is doing moving once again.

I'm happy to say that I think we are finally getting Luke's system cleaned out and he's not throwing up all the time, which is a huge answer to prayer. He also seems to be doing so much better breathing lately, today we had him off extra oxygen for quite awhile, though he's back on it again tonight. Both Gordy and I are noticing so many more smiles and communication from him, we're sure it's because he's feeling better. Please pray that he continues to mend, what an awesome Christmas present it would be for our entire family to have a healthy Luke for Christmas.

After waiting 3 months I finally decided to get the boys moved downstairs into what used to be Amy and Natalie's old room. It was quite the project and I had to wait until my back felt healthy enough to put the effort forth into cleaning the carpet, moving the furniture around, completely emptying out their old room and putting everything away in their new room. It's a much bigger room and they are enjoying the it so much. Once I got them out of their old room I cleaned the carpet in their old room and prepared it for Josh, Natalie and Abigail to stay in it while they were here visiting the week after Thanksgiving.

While I took Josh, Natalie and Abigail to the airport last Saturday, Gordy and the boys moved Luke's bed into the room that had been the boys room and we kept Lily in that room for a few more nights while I completely clean out her and Luke's old room and then on Sunday Isaiah helped me paint that room as it was blue and it needed a paint job. On Monday we finished cleaning out Luke and Lily's old room and I cleaned the carpet in that room and then the next day Gordy and Ezekiel moved the bunk bed that had been in the boys old room into what had been Luke and Lily's room. We then moved up a futon from the downstairs to Luke's new room, which has been a great addition to his room especially on those rough nights when he is alarming constantly it's so nice to have a place to sit or lie down instead of constantly having to run into his room.

Lily is now all settled in her "new" room, well really it was the room that she had shared with Luke since she had been born. She's enjoying making it into a little girls room, though she did say that she is going to miss being with Luke and tonight as she was going to bed I heard her in his room telling him about what is going to be happening tomorrow at church. We worked a few more hours in her new room today finishing up some projects that we had started earlier in the week and it's finally just about finished except for curtains in both of their rooms, along with no pictures on Lily's room yet. I will try to take some pictures to post of all the new rooms when I get a minute. 

Last but not least I know that I mentioned this before but I have to say once again how excited I was to take not just one walk this week but two walks, each 2 miles long. It feels so good to get out for my walks and even though I'm so much slower than I was before I know that in due time I will get faster as my leg contiues to heal and when the numbness is compeletly gone. I have an appointment later this week with a Neurosurgeon to talk about my back, which I almost cancelled due to the fact that I'm feeling so much better, but decided I would keep it to see if he has any suggestions on ways that I can get full use from my right leg once again. 

I'm moving off to bed, which is something I should of done hours ago as we have a very busy day planned tomorrow. The kids are in our annual Christmas program at our church, which I'm so very glad that Luke is doing better, it will be first time he's been able to go to church in a very long time. Then after church we are going out to dinner to celebrate Spencer's 21st birthday. 

Love in Christ,
Luke's Mommy Sue

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.

 

Thanking the Lord today for His Healing Power, Luke is doing so much better, Praise God!

A very quick update to let you know that Luke is doing a little better, Praise be to God! I took him into see his Pediatrician a few days ago and he ordered all kinds of bloodwork and cultures to be done to figure out what is going on. He started him on a steroid and amoxicillin for bronchitis. His blood work came back showing that he is definitely brewing a nasty infection and his sputum culture showed both strep and psudomonis, not good. I was happy to send a e-mail off to the Dr. yesterday morning saying that Luke was actually doing a little better, there was no explanation why he would begin to make a turn around so quickly, that is of course but for GOD's healing power, hallelujah:-)

Please continue to pray he makes a complete recovery from this sickness as I will be leaving this morning to go pick up mom's for our Mom's retreat this weekend. 4 of us mom's will be going down to Cannon Beach, OR and then spend the night in Portland so that Erin one of the mom's can see her brother which happens to go to school there. We will then drive up to Seatac to pick up more moms and then head down to Seattle for a few hours before heading out to Suncadia.

Will you please pray for all the mom's coming, for their families to stay healthy while they are gone, for them to have safe flights here and back home and for this weekend to be the most amazing time of their lives.

Thank you and God bless you,
Luke's Mommy Sue

I did it!! I walked/jogged/biked 26 1/2 miles to complete a marathon for my fellow Marathon Moms.

Well I did it, I said I would and I actually did it, yep I did a 26 1/2 mile marathon today. Nope it wasn't a race in fact it wasn't a traditional marathon, it was a marathon to raise awareness and money for my friends and fellow marathon moms, for our 3rd Annual Mom's of Near Drown Children Retreat happening next weekend. I began with a 10 mile walk/jog, then jumped on my bike for a 13 mile ride, in the middle of the ride I walked two more miles and then finished with Gordy, my kids and sister Cindy for the last mile.

Here I am celebrating with my family that I just got done completing 26 1/2 miles

Just finished my second mile, going strong at this time

The Rodriguez Family cheering me on as I finish my 4th mile

Yoli joined me for 6 miles

Isaiah went with me on my 13 mile bike ride

Amy joined me in the middle of my bike ride and walked another mile with me at Lake Wahop

Gordy, Isaiah, Ezekiel, Lily, Luke and Aunt Cindy joined me for the last mile

 

 

 

 Once again I've listed out what makes a marathon Mom:

• It’s a Mom who has a child that had a near drowning accident that is now unable to walk, talk, move or do anything for themselves. She changes that child’s diaper, even though they are way too old for diapers, she feeds that child because without her help that child would starve to death, she bathes that child which means she has to pick that child up and carry that child into the bath or shower and regardless of the pain she feels in her back she can’t give up on the care of their daily needs, because it’s a necessity that needs to be done. 
• It’s a mom that is dedicated to being sure that her child is receiving all the care and treatments that are available for that child to receive, no matter what the cost or time commitment is. 
• It’s a mom who no matter how tired she is and let me tell you she is definitely tired most days from either constant alarms going off at all hours of the day and night or perhaps she tired from getting her child to numerous medical appointments, while at the same time juggling her husband and other children at home, she keeps on going.
• It’s a mom who constantly tells herself to not lose hope even when the medical community has told her on numerous occasions that their child would be better dead than alive, yes most of us have been told that a time or two or they are telling her to just give up, but she refuses to stop believing in her child.
• It’s a mom who is in this journey for the long haul, it isn’t a sprint, its a marathon. And even when they can’t even see a tiny speck of light at the end of the tunnel they do not lose hope in thinking that their child will do better tomorrow, but tomorrow sometimes never seems to come.

• It's Annie Pettigrew Izzy's mom, Lindsey Black Santana's mom, Shauna Quintero Christian's mom, Tiffany Vara Abbie's mom, Erin Wright Aidan's mom, Kehau Edgamin Caleb's mom, Teresa Jewkes Samuel's mom, Julie Stafford Joey's mom, Jill Hostetler Seth's mom, Lisa Churek Brock's mom, Amy Vinson Jake's mom, Janet Ritenburgh Travis's mom, Sabine Summerville Michael's mom, Kahne Siedel Sam's mom, Joanna Barona Ethan's mom, Gina Harbison JP's mom, Cierra Sonetti Austin's mom, Dawn Gough Collins mom, myself Sue Searles Luke's mom and so many more mom's. 

I'm so thankful that Julie, one of the mom's coming to the retreat decided to do some fund raising this year for the retreat with her help we have just about raised all the money that we need for our retreat, which is actually happening next weekend. YES, I said next weekend it's hard to believe it will be here that quickly. 

Please, please keep all the mom's listed above and their families in your prayers this week as they prepare to come, pray that their special kiddos will all stay healthy and that everything will go smoothly while they are gone. 

Thank you once again for your prayers and your support,
Luke's Marathon Mommy Sue 

PS Luke could also use your prayers as he is still having trouble keeping his oxygen levels up. He's been on almost constant oxygen for the last couple weeks and nights continue to be a nightmare for Gordy and I as we continually have to get up all through the night to respond to his alarms.