Really Amazing News To Share, Great News, Good News and Challenging News

Just want to begin by letting everyone know that Luke did great during his surgery, he woke up pretty much right away this time in the recovery room. Once we got him into his room he did cry like I've never seen him cry in pain, after getting him some meds to help with the pain he settled down and slept most the rest of the day. He did so good they let us go home the next day, once we were home he continued to do great except for being in pain when we moved him. Moving him became a huge challenge during those days, so much so that I wrenched by back, but thankfully I'm feeling better once again. 

I so wish  I could say that he continued to do great but no, can't say that at all. It seemed like everytime they would turn up the medication in his pump he would not respond good at all, to the point that he would throw up for a couple of days and require lots of extra oxygen. So needless to say we've had to have his pump turned down twice now and I'm not sure if that's helping either. I took him into his Pediatrician last Monday because I thought perhaps he was dealing with some kind of sickness because of his need for constant oxygen and the throwing up he was doing. But after x-rays it was decided that he did not have pneumonia, but then took him into his Physiatrist last Wednesday, who is the Dr. in charge of his pump medication and he thought he did hear crackles in his lungs so we started him on his first antibiotic since March, since then we have not seen much improvement, erk. Which brings us to earlier today when I decided to take him into his Pediatrician again, he thought his problem are related to the baclafen  pump so he sent us to get it turned down again. After sleeping most of the day, he decided that he didn't want to sleep tonight, so it's either been gagging on way too much secretions, constant suctioning or alarming from his oxygen dropping way too low. Another sleepless night for me.

 Now onto some good news. Daniel and Sarah welcomed Penelope Grace into their family on July 30th, both baby and mom are doing really good:-) She's so precious and we are feeling so incredibly blessed. 

Other news in our family: Gordy and I were able to get away for two nights to celebrate our 29th wedding anniversary, we had a great time, though it was a bit stressful at times since that was when Luke started throwing up and needing lots of extra oxygen. Needless to say we went home to a very sick Luker man.

Gordy and I visiting one of our favorite beaches on the Oregon Coast Oswald West Beach

  








  

I have been telling the boys all summer long that they could have a campout in our back yard, so last week squeezed in between Amy's bridal shower on Saturday, Penelopes birth on Monday, Luke being sick with Dr. appointments, buying and then making the food for my neices wedding on Saturday, we had a overnighter with 10 boys sleeping in tents in the back yard. They all had a great time and got along wonderfully. Yep, I did it again way overscheduled myself this past week.

Some of the boys playing a card game during their backyard overnighter

The Toilet Paper wedding dress contest at Amy's bridal shower

Janell and John's wedding ceremony, they were married by Janell's dad John

Josh, Natalie and Abigail, such a sweet looking family:-)

Janell and Lily right before she walked down the aisle.

The boys all dressed up and waiting for the ceremony to begin.

3 generations

My sisters Lori, Jill, myself and Cindy

Love this picture of my girls:-)

Would you please pray that Luke will get better? Here it is morning and I'm just now climbing into bed, this night has been horrible. I keep praying that we will not need to be admitted into the hospital, but after another night like we've had tonight it's seeming more of a possibility. I'm so thankful that with God all things are possible, including Him healing Luke of whatever is causing all these problems he is having, that is what I'm believing for today, won't you please join me in these prayers. Thank you.

Love in Christ,
Luke's Mommy Sue

Please pray Luke goes in for surgery this morning at 8 am

I can't remember the last time I posted 2 blog postings in one day, but I didn't want to include this prayer request for Luke in the announcement of the birth of our precious new grand baby Abigail. Luke will go in for surgery tomorrow morning at 8 am to have a Baclafen pump put into him. 

We are hoping that this pump will help to limber him up so that we can finally get his knees bending again, along with bringing much needed relief to the constant severe muscle spacity that he deals with on a daily basis. It's a pretty major surgery that will require him to be cut open in the front to place the pump in his abdomen area, then stringing the catheter from the pump around to the back and then cutting open his back so that they can insert the catheter into the correct spot in spinal cord. I'm very happy to say that the surgeon that Luke has tomorrow has put in over 300 pumps and is very experienced with what he will need to do. 

Please pray:

• that Luke will make it through the surgery with no major problems,
• for the surgeon to do exactly what needs to be done correctly, 
• that his body will not reject the pump,
• that there will be no infections.
• that he will stay healthy and not have any respiratory issues,
• that it will be a short hospital stay,
• that I will have the strength and courage that I need to get through another surgery

Thank you and God bless you,

Luke's Mommy Sue

Guess whose a uncle? Or should I saw guess whose a Grandma? Or perhaps I should say guess whose a Mommy? Introducing Abigail Grace Thomure born July 4, 2012

Here's Natalie and Baby Abigail. Natalie did an amazing job giving birth, I'm so proud of her.

Josh has loved every minute he's spent with Abigail, he loves singing to her and reading the Bible to her.

Luke loves having us put Abigail down next to him, he yells when we take her away, he's really enjoying being an Uncle.

I was so blessed to be a part of Natalie's birthing process, she let me catch baby Abigail. It was one of the most amazing moments of my life.

Grandpa Gordy loves holding Abigail and even offered to change her diaper the other day.

Can you tell she's the center of our family right now? Here's Great Grandma meeting her for the first time.

We finally did it, we set Luke's surgery date for his Baclafen Pump

Gordy and I finally made the decision after much prayer and counsel, to have a Baclafen pump put into Luke, so I just scheduled the surgery this week for that to happen. It will be on July 11th, our hopes and prayers are that this will allow Luke to loosen up, so that when he has his knee surgery done the medication will help to keep his knees bending and loose, along with his other muscles too.

Here's Luke after his recent appointment in front of the gorgeous rose garden at Mary Bridge Hospital

 It's been a challenge to figure out the right time to do this surgery, as we are anxiously waiting the arrival of our two grandbabies in July. Natalie is due July 1st and Sarah is due July 24th, my hope and desire is that neither one of them will go into labor while I'm in the hospital with Luke, that truly would be devastating to me.


I'm so happy to tell you that Luke has been doing really good lately, he went to see the Pulmonologist yesterday and they asked me why we were there, I had to tell them because they had requested we go back in 3 months, it was so good to tell him that Luke has been doing so good lately. He has not officially had pneumonia in over 4 month and hasn't been on a antibiotic in at least 3 months. What a huge blessing it has been to have him be so healthy, I could really get used to this:-)

Lindsey & I in Arizona

Meeting Santana the for the first time

Amy and I had a great time on our trip to Arizona, I won't lie it was a really, really, really long drive there and back. But we made the best of it by driving down the California coast, stopping to walk over the Golden Gate bridge on the way down and visiting the Hearst Castle on the way home. Our time in Phoenix was amazing, it was so good to meet Santana and his family, I so enjoyed getting to hold him on my lap, praying with him and treasuring the time with him there, along with the time I spent playing with cars with Tyree, visiting with James and spending time with Lindsey. The Foursquare Convention was absolutely great, it was a time of refreshing for my soul, I loved each of the Speakers and the time of worship with Matt Redman was absolutely life changing.

Amy & I visiting the Hearst Castle in California

 The week I got home, I had a baby shower for Natalie, what a blessing it was to have 27 people shower her with gifts:-) She is now officially ready for her little Abigail to come. We finished up our homeschooling for the year, except for the test we will take next week. I took the kids to The Great Wolf Lodge, we got a smashing deal through Starlight, too good to pass up. Currently Isaiah, Ezekiel and Lily are over the mountain visiting there Aunties and they are having a great time in the sun, where it's actually summer weather. I will be picking them up on Sunday after I get done with the Homeschool convention I'm going to down in Portland this weekend.

The kids and I getting ready to leave the water park after spending 8 hours playing

Please continue to keep Luke in your prayers, so that he will stay healthy, for this surgery to go smoothly, for peace for my heart as the thought of another surgery is soooooo hard for me, and for both Natalie and Sarah to deliver healthy babies.

 Love in Christ,
Luke's Mommy Sue

PS Just wanted to let you know that I've decided to walk/jog/ride my bike in a marathon I'm doing on August 11th. I'm going to be raising money for our 3rd Annual Mom's of Near Drown Children Retreat in October, more details coming soon.

Full of Glee as I share with you Three reasons why Amy and I are Free to Flee tomorrow:-)

Just wanted you'll to know that Amy and I are taking off tomorrow night for a week long trip to Phoenix, AZ. This trip has 3 purposes, first of all this will be our last Mom/Daughter trip together before Amy get's married later this summer. Second we were blessed to be offered a free medical bed by my wonderful friend Lindsey and her husband, all we had to do was go pick it up and last but not least we are taking the opportunity to attend the Foursquare National Convention while we are in Phoenix. As most of you know Amy is the Children's pastor at our church and going to this convention is something that she was hoping to do, but wasn't sure how to make that happen, but thankfully God knew the answer.

I'm thankful to say that Gordy has given us his blessing in letting us go:-) He is going to be staying home taking care of the kids, while he continues to be very busy at work during the week we are gone. We are blessed in the fact that Natalie will be helping out most days and then we have Alexis our wonderful new helper willing to come over just about every morning to get Luke ready and all his morning stuff done each day. Luke and Lily are going to be spending two nights over at the Rodriguez home and the boys there one night along with one night at another friends home. What a blessing to have so many wonderful friends willing to help out with the kids while we are gone.

Please be praying for Luke to stay healthy. He has been doing so wonderful lately, his respiratory system has been doing great, he's been so alert and happy, really just doing amazingly well. I know that Luke get's stressed sometimes when I'm away and I'm praying that this time he will stay happy with all the regular people that he has in his life over here each day to be with him, helping with his daily needs.

 Here are the kids at a Birthday Party, Luke went with us this time and did great, what a huge blessing to have him be so healthy lately:-)

I would also really appreciate your prayers for Amy and I, we leave Friday night driving straight down to LA, spending Saturday night with a friend. On Sunday we will go to church at Angelus Temple with Lindsey and her family who will be in LA visiting her mom on vacation, and hopefully meet up with another friend for lunch that day, that night we will be in Phoenix where will be attending the convention for the next few days. Tuesday night we will spend the night with Lindsey and her family, can't wait to meet Santana her son after praying for him for so many years. Wednesday Amy heads back to the convention and I will get to spend the day with Lindsey. Thursday we take off to come back home, stopping by our favorite place in the LA area, Yoli's sister Becky and her families home for the night. Drive most of the day Friday and then get home on Saturday evening. Please pray that we will stay safe during our time traveling, thank you.

One other blessing of this trip is that fact that I will get to meet up with some very amazing mom's and meet some really special kids, kids that I pray for often. Yep, I'm feeling blessed:-)

Love in Christ,

Luke's Mommy Sue

 

Here's some pictures of a beautiful sunset down in Steilacoom that I was able to see this evening, I'm blessed to live in such a gorgeous state!

An Update in Pictures, Enjoy:-)

Here's Gordy and I waiting to eat at the Cheesecake Factory, sitting in front of a HUGE fish tank in Las Vegas

Gordy and I visiting the Hoover Dam

The Belagio Gardens were amazing

This picture was made out of living flowers, it was gorgeous!

 I got to meet Cierra at the Belagio gardens for lunch, had a great time spending the day with her and her precious kids

Here we are standing in front of a 3 story tall Crystal Chandler in the Cosmopolotian Hotel, no words can describe how beautiful and amazing it was.

I was blessed to meet Austin, so similar to Luke in the fact that he too was 17 months old when he had his near drowning accident, such a sweet precious guy.

Austin and I really connected the day I spent with him, what a joy it was to visit with him face to face:-)

 Here's Luke the day he spent in the hospital during his Baclafen pump trial, we will meet with the surgeon in a few weeks to discuss whether he is a good candiate for this surgery. Both the Dr., PT and I all felt like we definitely saw some good results from the procedure.

 Gordy and I took the kids to the zoo recently, they had a great time playing on the toys and seeing all the animals:-)

 Our family was blessed by Startlight to be chosen to Ride the Duck in downtown Seattle, we had so much fun riding through the streets of Seattle blowing our quackers, singing songs and hearing all the fun stuff about the city of Seattle.

 Our family up in Seattle last weekend, we had a great time walking along the waterfront and eating at Ivars for dinner.

Feeling blessed today to be getting my wish for my Birthday this year, SLEEP:-)

Today is my birthday, yep I'm turning 48 years old today:-) There is a part of me that really feels like I'm 48 years old and then there is another part of me that feels like I'm still in my twenties, though I sure don't want to go back there again. My mom asked me the other day, "Sue, what do you want for your birthday this year?" After thinking about it for a minute the only answer I could come up with is SLEEP, that's really all I want, a full night of uninterrupted, no alarms, sleep. I often think if I could just get a full night of sleep I could, run faster perhaps break my 12 minute mile for more than 3 miles,  I could wake up feeling refreshed, I could accomplish all the things that I have on my "to do list", I could lose a few more pounds, because you know that sleep is important to weight loss, I could . . . the list could go on and on. I've been so tired lately that I've woke up a few time recently in a panic because I thought that I had forgotten to do something, it's so real in my mind that I get out of bed to see if someone is coming over or I'm check my phone to see if I've missed some calls and to check my calendar. I also fell asleep recently after taking Luke to his PT appointment we were going to go shopping at Costco, well I thought since he had fallen asleep I would close my eyes for a few minutes, I woke up 20 minutes later confused to where I was and what I was doing. Kind of scary, sleep deprivation can do strange things to your mind.

I'm excited to say that I'm getting my wish this year for my birthday! You see Gordy has to go to Las Vegas this week for business and we figured since he has a hotel room all paid for, along with his flight and food, I could use our flight airline miles and get a free trip to join him, except for the cost of my food. To be honest I'm not all that excited about going to Las Vegas, I don't gamble, drink or really enjoy the shows, what really excites me is the fact that I will be able to sleep each night without any alarms going off or waking up to Luke coughing and gagging in the morning. I am looking forward to some time spent by the pool, catching a few rays, along with the fact that I won't have anything pressing that will need to be done for 3 full days. Also hoping to meet Cierra, she has Austin who had a near drowning accident a year after Luke, our stories are so similar in that our boys were both 17 months old, when they went from being healthy precious children, who were walking and talking to being little guys hanging on for their dear lives.

 Gordy and I sharing a huge delicious mud pie with our good friends Juan and Yoli, they took us out for my birthday, yep I'm blessed:-)

What I'm really hoping and praying is that Luke will do good this time while I'm gone, last time he decided to get sick the day I left and then continued to be sick for weeks to follow. He's been doing so good lately and I'm hoping and praying that he will stay that way for the next few days. It will be so nice to have this week off before we have a week of lots appointments next week, Luke is going in for a baclafen pump trial once again. Baclafen is a muscle relaxant and we are hoping that by putting it straight into his spine, which is what the pump would do he could enjoy the benefits of the medication without the nasty side effects of it putting him to sleep all the time.

PLEASE PRAY: For Luke to do great while we're gone

For the kids to be okay, they are sad to see us go.

For Amy as she is covering all the nights while we are gone.

For my mind to shut down at night so that I can get some really good sleep.

For safe flights for Gordy and I, we are flying at separate times.

For Luke's baclafen pump trial to go good next week.

Thank you and God bless you,

Luke's Mommy Sue

Blessed Beyond Belief - God is Good ALL the time, On the Days that seem impossible to get through and on the days that are full of amazing blessings.

Here are my sweet children on Easter

What a wonderful blessing to see our family grow:-)

The last two days have been full of amazing blessings from the Lord. Yesterday we had some great news concerning some financial assistance that we've recieved from the hospital, Luke's bills we had were paid for, which was a wonderful blessing. Then today when I called to pay off the remaining bill that we had for Luke's vest percussion machine I found out that after our insurance company paid off their portion we only had a 1/3 of what we thought we going to have to pay. We are so thankful to God for His amazing provision in paying off these huge medical bills for us.

Another piece of great news that we got yesterday was that I found a young lady that is willing to come and help out with Luke's care a few mornings a week. My sister Cindy has been faithfully helping 2 mornings each week with Luke's care for years now, to say I'm thankful for her constant help would be the biggest understatement of the year. Then this past year Natalie has also been helping two days a week. Natalie is now over 6 months pregnant and it is becoming very difficult for her to lift Luke in and out of the bathtub, I've been asking her for a few months if she was still able to do it, I didn't want her to get hurt or hurt the baby, but she was comfortable with it until just recently. I have been praying for God to fill in her spot and He is so faithful to direct me to a young lady that has babysat for Luke a few times in the past. Her name is Alexis and she only lives about 2 blocks away, she was just as excited to be asked to help us out, as we were that she is so willing to bless our family. She will start out with just a few hours each week in the morning, but will increase in hours when Natalie has her baby, she is willing to be very flexible in her hours and is a HUGE answer to our prayers.

Isaiah celebrated his birthday after Easter dinner with the family. Once again we begin the teen years with our children, we are blessed to have such wonderful kids.

Luke hanging out with dad at Isaiah's birthday party

Josh and Isaiah at the beach

Natalie and I getting blown away at the beach

On Isaiah's birthday spent the day at the beach,we were blessed with a beautiful sunny day, which is not usual for Washington this time of the year or any other time of year for that fact:)

Two sick kids + Two good reports = A very challenging day of mixed emotions

My challenging day really began yesterday after working out in the yard for a few hours. Isaiah, who I thought was just slacking off told me that he had a horrible headache and then when I came in an hour later to hear him hacking away felt really bad. You see he had just helped me cut down some of the branches that we've had hanging over our fence for the past month, so that I could mow our yard. I didn't realize how crummy he was feeling until I heard his horrible cough. Then a few hours later at about midnight Amy told me that she was feeling sick to her stomach and a few minutes later starting throwing up, which lasted for a few hours until she couldn't even keep water down. Needless to say I didn't get a lot of sleep as I laid in bed and listened to her throwing up for a good part of the night.

I was up very early today, bearly able to open my eyes from the exhaustion of only getting a few hours of sleep, but knowing that I immediately needed to get details taken care for the day since Amy was sick and I had to take Luke to two appointments starting at 9:30 am. I am grateful to say that my sister Cindy came over earlier than usual, gave Luke a bath, did his vest treatment and fed him, while I got on the phone to ask our wonderful friend Brenda if she could come to our house for her reading class instead us going over there, thankfully she was willing to do that for us today. After that was done I had to figure out all the details for what Amy had planned for the day, she had organized a work day at our church to paint the downstairs, thankfully once again my sister Cindy volunteered to take the paint over to the church and open it up for the workers, my wonderful friend Yoli volunteered to make the sandwiches that Amy was going to take for all the workers and Gordy worked from home so that he could help watch the kids.

Luke loves watching fish swim:-)

I got to Luke's appointment a few minutes late, thankful that the Speech therapist was still finishing up her previous appointment. I was hoping that she could help us figure out a way to help Luke get better about communicating what he wants instead of having to yell all the time. She was very pleased to see the fact that Luke will follow directions when he wants to, making toys work as he would press down on switch buttons. She noticed that from the time you ask him to do something it usually takes him about 30 seconds to respond, but he almost always does within that time period. We are going to start with a very simple clear laminated plastic sheet with a green yes and a red no on it and then I will ask Luke to look at what he is wanting, whether that's watching a movie or listening to a book. I'm really hoping this will just be the beginning of him being able to communicate with us.

We went straight from that appointment to see his pulmonologist and we were doubly blessed by the fact that his Dr. said that he thought that Luke was looking and sounding good today. He thought that perhaps what the radiologist saw on the x-ray was from some previous pneumonia, because he agreed with me that it doesn't seem like Luke has pneumonia right now. We are still going to proceed with trying to get a cough assist machine, in hope that it will help Luke get more productive coughs happening, hoping that our insurance company will okay it without a lot of hassle.

In trying to be quick about loading up Luke into the van in the pouring rain after our appointment I accidently pulled the back van door down on my head, needless to say I was suffering from a horrible headache, which made the drive home miserable. It finally started to subside after I took some ibuprofen, thank goodness.

I hope and pray that when I wake up tomorrow that Amy will be feeling better and that Isaiah's cough will be better too, though if it's not I think I will be taking him to the Dr. as it's been sounding nasty for a few days now. Please join with me in praying that no one else will catch Amy's nasty flu bug or Isaiah's cough.

I saw this saying on face book this evening and thought it was a very thought provoking quote. I'm not sure it's biblical, but it sure seems to be true in my life lately. I find myself asking God "WHY" alot lately, not a good place to be I know, for when we ask why, we are not trusting. I have been struggling lately with how "unfair" life can be, there I said it outloud for all to hear, now you know how I really feel. Okay enough said, I'm really tired so I'm going to go to bed. GOOD NIGHT.

Love in Christ,
Luke's Mommy Sue