Friday, September 30, 2011

Sometimes the hardest days can be the most rewarding days

I'm pretty sure that anyone out there that has been reading Luke's blog for a long time can agree with me in saying that life with Luke is often hard and challenging, but it is also rewarding and a huge blessing. Gordy and I often say that Luke and the word "easy" don't ever go in the same sentence, it's the truth and nothing but the truth. I would also hope that if you've been reading this blog for many years you would also say that I try not to be too negative, it really does go against my nature to be negative, I'm usually a pretty positive person, though there are times that in "keeping it real and honest" that's almost impossible to do.

Yesterday was one of those days that was very hard, but at the same time rewarding. I think I mentioned in a previous post sometime ago that I was asked to be on the Family Partnership Council at Mary Bridge Children's Hospital in Tacoma. If and when Luke has to be in the hospital, Mary Bridge is in my opinion is the best place for him to be during those necessary visits. Part of being on the Council is sharing at staff training meetings, I have had the opportunity to share at 3 meeting for the nurses on the medical/surgical floor and then yesterday I shared with the nurses and RT's from the Pediatric Intensive Care Unit.

I had a feeling that this was not going to be easy and I was right! It was extremely hard to go back to the days that Luke has spent in the PICU, remembering so vividly the first night we spent in there is like asking you to remember your worst nightmare. At all these meetings I was asked to share a time when I felt like our family/Luke's emotional needs were met and then share a time when I felt like they were not met. I was shocked to learn that one of the nurses still checks up on Luke's blog sometimes and she remembered in detail like it was yesterday when Luke was in the PICU. It just goes to show you, that you never know who is keeping up on your blog/life, it's humbling and scary to think that people care enough to continue to follow along with us on Luke's journey. I feel pretty confident that the impact of my sharing our families experience at the hospital, well hopefully make other families that stay at Mary Bridge even better than it was before, at least that is what I hope to be true and why I got involved on this council.

One other thing that has been really hard to do lately is ask for people to help share my vision in what I'm wanting to do for the Mom's that are coming to the PONDS retreat in October. This year people don't seem to be as receptive as they were last time and I say to myself of course Sue, people are having challenging times right now just making ends meet in there own homes why would you think they would have any extra to share for this retreat. So far God has put it on some peoples hearts to share what they can and we are now at about $500 raised, which is just enough to pay for the food, some of the gas costs and the house maintenance/maid fee.
Here's a picture of the Mom's that came last year to our POND's retreat
This year we will have 5 new mom's to add to the picture:-)
In the past 7 years of writing this blog Gordy and I have tried to make it clear to people that God has and continues to bless our family and even though our medical costs can be out of sight some months, they have always been paid on time. I really do believe in my heart that it was God who laid it on my heart to put together this retreat and when God calls you to do something He ALWAYS supplies the means to do it. Therefore I guess the only reason I asked for help from y'all was to allow you to share in the blessings you would receive by giving to this retreat that was started to bless these mom's that live in EXTREMELY hard circumstances. I realize that I am one of the mom's benefitting from the retreat therefore some of you may of thought it was selfish for me to ask for money for myself to have a fun weekend away, but really that was not my heart.

I say all of this not to guilt you into giving towards this retreat, but to help you see my heart in asking you to share this burden with me. I have no worries that God will provide the money, He always does! Truly the greatest thing you could do for our retreat is PRAY, please pray for the mom's to have peace to leave their "fragile child", please pray for them to find the rest that they so desperately need, please pray for their families to stay healthy, especially their child that has suffered the near drowning accident, please pray for their finances to come in to pay for their airline tickets to get there, please pray that we will be able to encourage each other and give each other the hope that we desperately need to get through another day, week, year, just please pray, it's the most important thing you can do for us moms!

Love in Christ,
Luke's Mommy Sue

PS Luke goes in for his GI ultrasound tomorrow, please pray that all will go smoothly and that they will not find anything wrong. Luke also starts back with one of his all time favorite OT's tomorrow afternoon who was transferred to Mary Bridge hospital a year ago, so it will be a very full day of appointments. I will let you know soon how things turn out.

Monday, September 26, 2011

Opps, I posted too soon about Luke's GI study, seems they may of found gallstones:-(

I got a call this morning from the GI clinic saying that they may of found gall stones during his lower GI study. I take him in on Friday for an ultrasound, kicking myself that I asked to have it cancelled as we could of already been done with it last week. Would sure appreciate your prayers that they would not find anything and that we can get beyond all these GI appointments.

Luke's Mommy Sue

Luke's GI study results + new seizure activity + casting opportunities shot down before even being tried = A way too long post all about Luke

Finally a long overdue update about Luke's recent GI tests that he had done. The Endoscopy procedure came back showing no problems, except for perhaps some yeast growing, but even then they weren't 100% that is what they saw. The Dr. perscribed Nystatin for the yeast infection, but after trying to give it to him in his mouth twice I came to the conclusion that it was not worth having him choke and aspirate on it and to be honest I didn't see any signs of yeast infection in his mouth.After hearing the news that all looked fine I asked the Dr. if we still needed to do the ultrasound and lower GI x-ray study and he said that we could skip the ultrasound but he still wanted to do the lower GI empyting study. That happened a week ago and we won't hear the results from that until Luke's GI Dr. appointment on October 4th. I figure though if they had found anything really bad they would of contacted us by now.

Here's Luke and I at the hospital during the GI study waiting for another x-ray to happen

The lower GI study they did was a very long and tedious procedure. I had to have Luke at the hospital by 8:45 am and we didn't leave the hospital until around 2 pm. They started by putting barium down his g-tube and then taking an x-ray, then we had to take another x-ray every 30 to 45 minutes for the next few hours to see how fast the barium was going through his GI tract. Needless to say I had quite a work out as I had to lift him up out of his chair onto the table over and over and over again. I hope that is the last time we have to do one of those studies.

Here's Luke still at the Hospital 4 hours later waiting for another x-ray to happen

I'm so happy to say that Luke seems to be doing better lately than he's been in a long time. We actually got to go to church two Sunday's in a row, which was the first time that's happened in months. That said we still have to deal with the challenges of him alarming off and on all night long, as tonight it's been especially bad for the alarms going off, that is why I'm sitting here at 2:30 am blogging. Though I'm trying not to complain about it since Gordy let me go to bed early last night and I got to sleep an entire night without any interuptions, boy did I need it I was severly sleep deprived.

Luke's been having some bad seizures lately, so after calling his Neurologist it was decided that we are going to try out a new anti seizure medication called Banzel. We are just waiting for the prescription to be filled as our pharmacy doesn't carry this medication. I will be honest I have put off calling about this problem for awhile, I just don't like what seizure meds do to Luke, but Gordy and I have come to the conclusion that we need to get these seizures under control. I hope and pray that this medication will be the answer to helping Luke stop having these seizures without causing him to lose any attentiveness that we've gained over the years.

At the beginning of the summer I had talked with Luke's rehab Dr. about perhaps splinting his ankles to see if we could help train his feet to go back to there natural place, you see his feet have been pulling up into his legs lately because of his muscle tone issues. I found out from his PT last week that she along with Luke's Dr. and one other PT at the place Luke goes to for Physical Therapy talked without me there about whether this type of casting would benefit Luke. To be honest I wasn't very happy that I wasn't involved in this meeting as I would of loved to give my input being Luke's mom and knowing him better than they do of course. They decided to once again to do nothing for Luke's legs, ankles, feet, etc. which has really upset me because you see they put all kids that have suffered from near drowning accidents into the same catagory, you know the catagory of being hopeless, erk. After our talk last week it was decided we might still try it as it does seem to be one of the few options we have for helping Luke's leg issues. I told his PT that if we continue to do nothing Luke is going to get to the place were we are no longer able to take him our of the house as he won't be able to sit in a car seat anymore because of his legs not bending. That to me is not an option, we have always tried to include Luke into most of our family outings and which is not an easy task but one that we realize is vital to keeping our family together. I will let you know of course what they ultimately decide about the casting issue.

Lily asked me to take this picture of her and Luke while we were visiting my mom and dad last week. It's so nice to have my parents so close they are only 5 minutes away now.

I continue to hope, believe and have faith in God for Luke's complete miracle healing. I have been encouraged by some amazing prayer times at some evangelistic meeting I've been attending lately. God is faithful and I believe Luke will walk and talk again one day, my greatest hope is that it will be soon.

Love in Christ,
Luke's Mommy Sue

PS Please continue to pray for the Mom's coming to the retreat next month, I listed all their names in my last blog post.

Wednesday, September 21, 2011

Announcing our 2nd Annual Retreat for Mom's with a child who has suffered a near drowning accident. Would you like to help??

We are in the process of planning our 2nd Annual Retreat for Mom's who have children that have suffered from a near drowning accident. We knew last year when our first amazing retreat was over that we would have to do it again next year, so we've been planning it all year long. To say we are all getting really excited would be a understatement, most of us are ecstatic!!

This retreat is desperately needed for so many of us mom's this year as many of us have had some really scary and hard circumstances happen this past year. Many of our children have spent time in the hospital this past year, some of us mom's wondering if our precious children will survive another sickness. Just try to imagine for a moment what's it's like not knowing if you will get another day, week or year with your precious child, hearing Dr.'s tell you that your child is beyond their help, knowing that it's only God's grace and healing hand that allows them one more day with their family.

The stress that many of us mom's live with on a daily basis is severe, even when our children are healthy we still have to deal with the fact that our children are unable to walk, talk, move on their own, feed themselves, go to the bathroom by themselves or communicate their basic needs to us. Then add on top of that the Dr.'s appointments, PT appointments, OT appointments, dealing with insurance companies, fighting to get services for our children, pleading for help with their education, while some of the mom's are fighting to keep their marriage together and constantly making sure that our other children feel loved and are just as important as our child who ALWAYS needs our attention. It's a constant battle just to find a moment to ourselves, let alone find time to take care of our physical needs. Last but not least many of us mom's are severely sleep deprived. YEP we really do need this time away!!

Details, details, details, here are some details about our retreat:

It will be October 20 - 24 2011
Yes we have added one more night this time

At Suncadia Resort in Eastern Washington,
once again we've had the gorgeous Vara home donated to us for the weekend

We have 15 mom's coming this year

10 Mom's returning
5 new Mom's coming for the first time

Mom's coming from Hawaii, Michigan, Georgia, Oklahoma, North Carolina, Arizona, California, Utah, Wisconsin, Colorado and me from Washington 11 different states in all

Lindsey who has Santana nd 12-16-2006 from Arizona

Shauna who has Christian nd 7-8-2009 from Arizona

Jill who has Seth nd 9-15-2002 from California

Julie who has Joey nd 1-16-2007 from California

Dawn who has Collin nd 6-23-2001 from Colorado

Amy who has Jake nd 3-2-2006from Georgia

Joanna who has Ethan nd 5-12-2008 from Georgia

Kehau who has Caleb nd 3-6-2007 from Hawaii

Tiffany who has Abbie nd 5-3-2004 from Hawaii

Janet who has Travis nd 5-21-2007 from Michigan

Erin who has Aidan nd 2-16-2008 from North Carolina

Annie who has Izzy nd 5-16-2004 from Oklahoma

Teresa who has Samuel nd 7-19-2005 from Utah

Sue who has Luke nd 8-30-2004 from Washington

Lisa who has Brock nd 8-1-2008 from Wisconsin

Because of the fact that Luke has had so many challenging days, I mean weeks this past few months I have been negligent in letting people know that once again we could use your help this year with costs of the retreat. Of which I'm so happy to say that already a few people have either donated some money or said that they are going too:-) I'm not planning to do as much as we did last year, instead of spending a day in Seattle we will be going to a little Bavarian town called Leavenworth. We also plan to spend more time at Suncadia this year as it is such a beautiful resort. Here is my estimated budget for the weekend:
$250 for food, I'm hoping to get some of the food/meals donated
$300 for gas we have airport runs on Thursday, Friday, Sunday and Monday, it's 90 miles each way from the airport to Suncadia
$150 for our day in Leavenworth
$250 for a lunch at the Suncadia Winery Restaurant
$150 for the cleaning/maintenance cost for the use of the home
$50 for BUNCO prizes
Total $1150 - $200 that has already come in = $950
My goal last year and this year is to make the cost of the retreat free, except for airfare to get here, will you help fulfil my dream once again? I know that many of you are thinking that you not able to give a lot, just remember a when everyone does a little it equals out to be a lot:-) If you are interested in giving please e-mail me at, I will give you my address, thank you.

Last but not least I would really appreciate your prayers, they are more desperately needed than your donations. Some of these mom's have never left their child for more than a few hours at a time and I know that to do so is a HUGE feat for them, also PLEASE pray that their children stay healthy so that they will be confident in knowing that leaving them at home will be okay. Thank you in advance.

Love in Christ,
Luke's Mommy Sue

PS I know that I need to do a update on Luke and I promise to do that in the next day or two, just know that he is doing pretty good right now.

Saturday, September 10, 2011

I know I've said it before, but I have to say it again, life has been way too busy lately!

Life has been soooooo very busy lately. Let me see . . . Since I last blogged I helped moved my parents, had a way too much fun Labor day weekend, we went to NW Trek on Friday, the beach on Saturday, Seattle on Sunday and finished off the weekend at Mt. Rainier National Park on Labor day, had appointments to go to, a speaking engagement, endoscopy procedure for Luke and the list goes on . . . . .

Here's our group up at the top of Mt. Rainier at Paradise

Natalie was in charge of the SMORES the night at the beach, Yoli is being her silly self
Daniel, Sarah and thier cute little dog at the beach bonfire, after spending the say surfing.

Luke and I after I had pushed him up the a very steep trail up beyond Paradise lodge

Amy & Lance at the Mountain

Sarah and Daniel at the entrance to Mt. Rainier National Park, it was her first visit there
Check out this tree, a beaver did this, we saw a huge beaver dam on one of our walks up at the mountain.

Here are some of us after we ate our lunch getting ready to go on a small walk at Longmire.
Crazy times in the van, the only person that wasn't there was Josh, he decided that he needed to stay home to rest up for his week of work.

Gordy, Luke and I waiting for Luke to get his IV done so that they could put him out for his endocospopy procedure.

Luke was doing really good for awhile, then we took him on part of our too much fun weekend, which ended up being too much for him, needless to say he had a hard night on Monday night and part of Tuesday, then he seemed to get better again. He was doing really good until his procedure on Thursday, which brought good news in the fact that they didn't see anything really wrong with his stomach or digestive tract, but after the procedure he has had a lot more secretions. The Dr. prescribed Nystatin because of what he thought was some yeast problems in his esphogaus, though we won't know for sure until the results come back from the tests they are running on it. Anyway I was supposed to give him 2 mls of Nystatin in his mouth twice a day, but after 7 years of not having near to nothing in his mouth Luke doesn't swallow very well, he just makes horrible faces and spits it out or chokes on it. Last night was quite the challenging night as I was once again having to suction him most of the night. Tonight he seems to be doing better, thank goodness.

Next week we are starting our 17th year of home schooling. I'm hoping to be more involved in the schooling this year, after letting either my sister Cindy, Amy and Natalie do most of it the last few years of which I'm extremely thankful to them for all their hard work. This year Natalie has said that she will come over twice a week to help with Luke in the morning and Cindy will continue to come twice a week, freeing me up to focus on schooling the other kids. Our number one focus this year will be to see how many Bible verses we can memorize as I feel we have lacked in this area the last few years, then of course we will still have math, reading and writing each day, with science thrown in there and some living history readings, piano lessons once a week, the YMCA twice a week and I'm sure there are other things that I'm forgetting right now. I am also going to try to go to the YMCA with the kids this year, this will be first time I'm back at the Y since Luke's accident, a lot of the people there have thought at times that Amy was the mom, since she was so faithful to take them each week, of which I'm so grateful for her help.

I really feel like I need to make homeschooling more of a priority in my life to pour into my other children's lives, Luke has dominated my life for so many years now, not because I have wanted it that way but because it has needed to be that way. Would you be willing to pray that God will allow me to make these changes in my life, that some how I will be able to balance the need for all of Luke's appointments and medical needs with the needs of my other children? I'm going to give this new schedule at least a 3 month period at which time I will re-evaluate how it is all working out.

I have to have Luke at the hospital at 7:45 am Wednesday morning for a ultra sound of his stomach and digestive tract and then we go in for a x-ray study of watching how long it takes him to digest his food. Needless to say it will probably be a full day there. Will you join with me to pray that he does fine and that everything shows to be working fine? I will let you know how things turn out.

Love in Christ,
Luke's Mommy Sue