Sunday, October 30, 2011

What a great weekend was had by all during our 2nd Annual Mom's Retreat

Here are all 15 Mom's
Back row Janet, Sue, Lindsey, Tiffany, Kehau, Amy & Teresa
Front row Annie, Dawn, Jill, Julie, Joanna, Lisa, Shauna & Erin
A Big Thank you to Julie for giving us all a new t-shirt & to Lindsey who designed them

It's amazing to think that none of us mom's would have never even known each other except for the fact that we've all lived through the most severe tragedy that can be comprehended.

We've all seen our children die from drowning and we've all seen our children come back to life. We've all spent weeks in the PICU wondering if our children will ever wake up out of their coma, we've all spent numerous nights sleeping on uncomfortable chairs/bed's in hospital rooms, we've all been told that our children have little hope of ever being the same again.

Some of us have gone through the trauma of watching our children suffer from seizures, watching them struggle to catch their breath while they have yet another pneumonia, watching and praying that they will wake up from yet another surgery or procedure.

We've all lost count of how many appointments we've taken our children to, most of us have tried many different kinds of medications/supplements to help our children be able to loosen up from the horrible muscle tone they experience. A lot of us mom's have tried every type of therapy we hear about, always looking for something that will make a difference in our childs life. We've all cried way too many tears and have lost way too much sleep.

And yet somehow, we continue to stay strong. We have learned that we can go to each other with questions and concerns, it's a safe place to go knowing that we all want the same thing for our children, we all want to see our children healthy and happy.

This one weekend of the year we all go knowing that we will all be able to relate with each other what we are going through, knowing that we can talk about medications, therapies, surgeries, supplements and understand what we are talking about. This one weekend of the year we can laugh together and not feel bad if we shed a few tears, we understand each others pain and we except it for what it is. It's like taking a deep breath knowing you're understood, it's refreshing and renewing and we can't wait for our next one to come.

Lindsey and I getting a pedicure on Wednesday afternoon the day before the retreat began
Shauna & Lindsey at Ivar's Fish Bar on the Seattle Waterfront
Lindsey, Shauna & I at Pike's Place Market on Thursday morning

Amy, Julie and Jill in Seattle
Janet, Julie, Dawn, Teresa, Amy & Joanna arriving together on Friday afternoon
Everyone learning how to play Hand and Foot on Friday evening
Teresa and Tiffany waiting for everyone to take our annual picture Saturday morning
Lisa, Kehau, Joanna and Shauna visiting Leavenworth for the first time
Joanna and Erin, with Julie creeping behind them in Leavenworth

Teresa & I taking a break after a full day of walking around Leavenworth
Lisa, Amy, Shauna, Julie & Erin posing for a picture in front of the Christmas store

Julie, Lindsey & I getting a picture of the beautiful tree in Leavenworth
Kehau & Shauna enjoying the beauty of the tree's in Leavenworth
Teresa, Annie & I posing for another picture in Leavenworth
Lindsey & I in front of the this beautiful wall of leaves
This picture really shows our true colors shinning through, lots of laughter and fun!
Julie, Erin, Lindsey & Janet taking a much needed break after walking around town for hours
Joanna & Kehau enjoying a cup of coffee
Kehau & myself, she had to take a picture in front of this beautiful wall of leaves. It was Kehau's first time to see fall leaves since she is from Hawaii and they don't have fall leaves there.
Lindsey, Amy & Joanna playing BUNCO
Dawn & Annie enjoying a delicious piece of Chocolate cake that Teresa made for us
Dawn, Jill, Erin and myself playing BUNCO

Most of us out for a walk on Sunday morning
All of us posing for a picture in the wine cellar of Stillwaters Winery/Restaurant
Annie, Teresa & Lisa sitting in the freezing cold cellar enjoying our lunch
Tiffany & I sitting at the head of the table for this picture
Joanna, Lisa and Lindsey being silly. We were all being very silly, so much laughter and fun times, it felt so good to just let our hair down with no stress going on in our lives.

Annie braided Joanna & Lindsey's hair, fun times
All of us being silly in this picture

Saying good bye at the airport, such a hard thing to do, but comforted knowing that we will all see each other again next year for our 3rd Annual Mom's retreat:-)

Saturday, October 22, 2011

Just a quick update:
All 15 moms are here
I had a wonderful relaxing day yesterday, went for a walk, sat in the hot tub, played hours of fun games, spent lots of time laughing and talking.
Luke is doing so much better at night, which is a huge answer to prayer.
We had a great breakfast this morning, we are having a little time of sharing, then we off to Leavenworth for a few hours.

Thanks for all your prayers they are working, please keep them coming!

Love in Christ,
Luke's Mommy Sue

Thursday, October 20, 2011

We sure would appreciate extra prayers this weekend

Well it's finally here our 2nd Annual Retreat for Mom's who have a child that has suffered from a near drowning accident. As many of you may recall we had 11 Mom's and 1 Grandma come last year, this year we have 14 mom's coming, along with myself make a total of 15 mom's plus our wonderful, airport runners/cookers/dish washer's Amy & Yoli. We have 5 new mom's coming this year and one mom who could not come back this year, but hopes to come back next year, I hope she does too:-)

I'm very excited for this weekend, but to be honest it's been kind of crazy pulling together all the details and even now I sit here blogging instead of packing my clothes, at least I have all the food packed, along with all the other items I need to take there this year. I hope to get at least a few hours of sleep tonight, before I need to be at the airport tomorrow morning at 9:15 am to pick up Shauna our next mom to come.

Lindsey decided to come in one day early so I went to pick her up at the airport this morning, then we went to Costco to finish the grocery shopping, ate lunch at Taco Time, one of her favorite restaurants, after unloading the van we went to get a pedicure and then to top off our afternoon we each went to get a massage. We then came home to a delicious dinner prepared by Amy. Natalie, Josh and Josh's brother visiting here from Missouri, along with Lance all joined us for dinner so we had a very full fun table tonight. We ended the day playing a card game with Natalie, then packed up the van with all the food stuff and other items we will need this weekend. Now everyone but your's truly is sound asleep while I sit here blogging, did I mention I still haven't packed yet??
Here's Lindsey and I getting a Pedicure, woohoo:-)
After picking up Shauna tomorrow, we are going to Seattle for a little while before heading over the pass to Suncadia. It will just be the three of us before the next four mom's fly in late at night. Then the rest of the mom's come in on Friday. I'm looking forward to sleeping in on Friday morning, it will be everyone for themself for breakfast.

PLEASE keep Luke in your prayers, even though he is doing so much better during the day, his nights are still very challenging to say the least. Amy will be here tomorrow night with Gordy before she heads up to join us mom's, so that means Gordy will be home by himself Friday, Saturday and Sunday night. Thankfully my sister Cindy has volunteered to come over Saturday morning to get Luke up and ready for the day so that way Gordy can have a little extra sleep just in case the nights continue to be a challenge.

On Saturday evening Gordy, Josh and Natalie are taking the kids up for Starlight's Trick or Suite, where the kids will enjoy a carnival atmosphere of games and fun stuff at a very nice hotel in the Seattle area. Josh and Natalie have volunteered to spend the night with Lily, Isaiah and Zeke so that they can have a great time swimming in the pool and enjoying the hotel while Gordy will be bringing Luke home, which will be so much easier than having him stay there too. Sorry I will be missing all the fun but I had already scheduled the retreat before I saw the dates for this fun outing.

Last but not least please keep all the mom's, along with their children and families in your prayers this weekend. Here is the list of who is coming: Annie from OK, who has Izzy, Kehau from HI who has Caleb, Tiffany from HI who has Abbie, Julie from CA who has Joey, Jill from CA who has Seth, Dawn from CO who has Collin, Joanna from GA who has Ethan, Amy from GA who has Jake, Erin from NC who has Aidan, Teresa from UT who has Samuel, Lindsey from AZ who has Santana, Shauna from AZ who has Christian, Lisa from WI who has Brock and Janet from MN who has Travis.

Thank you for your faithfulness, your prayers keep us going:-)
Luke's Mommy Sue

Monday, October 17, 2011

So many tears shed today, for so many reasons

Today was one of those days that I would just as soon forget. It was a hard day, really hard for many reasons. Partially because I was/am exhausted, I can't remember the last time I have slept for more than 3 straight hours. I didn't get to bed until after 4 am therefore I slept in a bit to get a few hours of sleep, hating the fact that my day was partially over when I finally rolled out of bed. It was a beautiful sunny day so I did go for a short walk, which actually only brought a little bit of pain to my knee, yahoo I'm getting better. After a walk and shower I had to hurry to get Luke to his Dr. appointment on time arriving 3 minutes late, I was so glad they didn't make us reschedule it.

Luke and I waiting to be called back to see the surgeon
The surgeon we saw today was the same surgeon that put in Luke's trache and j-tube shortly after his near drowning accident 7+ years ago. He didn't remember Luke, didn't really expect him to after so many years. We talked about the pro's and con's of Luke getting his gallbladder removed. He was very inconclusive on whether we should proceed with the surgery. On the one hand many people have gallstones and never even know they are there, therefore they never even think about taking out their gallbladder. On the other hand the majority of children that have gallstones usually get their gallbladder removed so that they don't have problems with them at a later time in their life. I asked him if it was his child what would he do and he said that he would probably take out their gallbladder, that said he wasn't sure if that was the right answer for Luke.

The Dr. said that because of Luke's neurological and respiratory problems it's not expected that he should live a long life therefore why should we put Luke through what could be a dangerous surgery because of the sedation process. He said this as if we hear it all the time, he even mentioned to me I'm sure you've heard this before and if you haven't then Dr.'s are not being honest with you. Nothing like throwing a huge dose of reality in my face. I realize that this is a totally true statement according to man's belief's, but I serve a Mighty God who does not listen to what man has to say, His ways are not our ways. And even though I don't doubt for a single second that Jesus is able to reach down right now and heal every part of Luke, it still hurts to hear this said about my precious child. Just imagine hearing these words said about your child or about yourself, it hurts more than you can comprehend.

After our appointment with the surgeon I had a long talk with Luke's pediatrician over the phone about what he thought we should do. We basically came to the conclusion that we should probably move ahead with the surgery, because if Luke does have a gallstone come out it could cause him major problems and because he is unable to tell us where he hurts we won't know it's his stomach giving him pain until perhaps it would be too late. Though before we move ahead Luke Pediatrician wants to consult with his Pulmonologist to get his opinion on what needs to happen before Luke is ready for surgery. More appointments, erk.

On a happier note, Luke is doing so much better today, he didn't need any extra oxygen today, which was a huge step in the right direction. Tonight has also been better, not even close to the same amount of alarming and suctioning, Praise God. I'm also very close to being just about done getting together all the food for the retreat, which is a huge relief.

PLEASE, pretty please pray with me about Luke getting completely over this sickness so that I can feel good about leaving him at home with Gordy this weekend, because to be honest the thought of leaving Luke this weekend is not something that either Gordy or myself is looking forward to. Also please pray for Tiffany's son Kyle who was admitted in the hospital today with some major problems going on. It's Tiffany's home that we will be staying at for the retreat and is vitally important that she is able to be with us there of course.

Thank you,
Luke's Mommy Sue

My oh my, here's my journal entry about the week that never seemed to give us a break

Oh my goodness, what a week! I think that I spent close to 10 hours at medical appointments last week. I realize this is a really long post, I was going to apologize for it being so long but then I had to remind myself that this is a journal of our life with Luke and this week has been a doozy of a week. Someday I may look back on this entry and wonder where I was able to find the strength to go on another day, hour, minute, second and then I will remind myself it was only because of God's supernatural strength that I was able to get through it and still be standing, because He once again has shown himself to be Mighty in my life.

Monday Luke had his rehab Dr. appointment where we decided to wean him off the baclafen he's been on for years now and try a new muscle relaxant once we get him weaned off it. Once we left that appointment I took Luke to get a EKG done for his Neurologist who wanted to see if his heart is doing ok since I had reported to him that Luke was having a high heart rate in the middle of the night the previous week, I thought it was due to the seizure meds we were trying out, but of course it could of been due to others things, who knows for sure. When I got home I realized that both Zeke and Lily were not feeling well at all they both had very sore throats a low grade fever and head ache. That night Luke had a rough night, Lily had a rough night and even Zeke was up a few times crying, which meant I got very little sleep.

Tuesday I was blessed to have Natalie come over to help in the morning so that I could get a few hours of sleep, then when I did wake up I realized that both Zeke and Lily were not doing any better, so of course they were unable to do any school that day or go to the YMCA. I did end up going to the Y with Isaiah who was feeling good. Silly me I thought I would try out the Zumba class, oh my goodness did I pay for that, with severe pain in my knee, in fact the pain was so severe that even after taking 4 Ibuprofen I was still crying out in pain. Needless to say I didn't get much sleep once again.

Wednesday Gordy ended up staying home from work because I was unable to give Luke a bath and needed help just to get him out of his bed into the living room. Once I was up I realized that Zeke's tonsils were so swollen that I needed to get him into the Dr. that day and I also made an appointment for me to have my very swollen knee checked out. Between the two of us we spent about 2 hours at the Dr.'s office that day. I got home just in time to help Gordy clean up Luke who had been throwing up constantly for about an 1/2 hour. As I picked him up I realized that he was feverish, upon taking his temp I realized it was close to 104. I immediately gave him Tylenol praying that he would not throw it up and ran to the store to buy children's ibuprofen since we were all out. Once again it was a night of very little sleep, constant suctioning and slowly, very slowly feeding Luke praying he would keep some of it down.

Thursday I got to bed at about 7 am, slept for a few hours and then decided that we needed to get Luke into see the Dr. Took him in and after his Dr. listened to his lungs he didn't think that Luke had pneumonia, but to be on the safe side we did x-rays and blood work. I asked the Dr. what if anything showed up on Luke's EKG and he told me that Luke is showing some strain on his heart because of his lung problems, not the news I wanted to hear at all. The Dr. said that he would let us know as soon as he did, what the x-ray and blood work showed up. That nights things turned even worse as Luke was needing massive amounts of oxygen just to keep his numbers above 90. I was finally able to get into bed around 4 am.

Friday I woke up and checked to see if anything had been reported from Luke's Dr. and sure enough he wrote an e-mail saying that the radiologist thought that Luke did indeed have pneumonia, then he called about an hour later saying that Luke's blood work came back showing that he was brewing a huge infection and to say that I needed to get Luke into the office ASAP to get him some shots of antibiotics and to pick up the other two antibiotics he had ordered for Luke to take at home. They didn't have the antibiotics at the office we were at so I ran Luke home and then went down town to pick up his medications. Luke had a tiny bit better night that night, though he was still needing way too much oxygen for my liking.

Saturday I was able to sleep in a little bit, Praise be to God! Luke was doing a little better, Praise be to God! I was feeling good enough to walk about 2 1/2 miles and even though it was way slower than my normal time, I was able to make it without too much pain, Praise be to God! I was able to get the laundry done and a few other things done around the home, Praise be to God! That night I had my graduation/Auction for the Leadership training course through the Pierce County Coalition for Developmental Disabilities, that I had been taking for the past year, so glad I took that class, but also glad it was done, Praise be to God! That night was another rough one and because I decided to try to go to bed by 1 am, I ended up paying for it because both Gordy and I were up a couple times every hour all night long, yep it was a long frustrating night.

Sunday both Gordy and I dragged ourselves out of bed exhausted but knowing that we needed to get the kids ready for church and Gordy told me that I could go this week since he went last week. Luke seemed to be doing a bit better again and that was good news, but we both knew he was not ready for church. I went and I was so glad I did, our Pastor let me once again announce the mom's retreat and we were able to have some good prayer for all the mom's going. After church I was blessed by people giving me donations to help with the costs, I went home with $320, which was so amazing. I was able to go do some of the shopping that I've needed to get done all week for the retreat.

Well here it is Monday morning at 2:30 am. I really need to go to bed, but I want Gordy to get a good sleep since he has to get up to go to work tomorrow morning. Luke is doing so much better tonight but he is still alarming about every 15 - 30 minutes. Luke has another appointment today with the surgeon to discuss his gallstones, I know that he is going to suggest taking out Luke's gallbladder, erk. Though I don't think they will even think about surgery until he recovers from his recent bout of pneumonia. I hope and pray that Zeke wakes up feeling all better tomorrow, his tonsils are still huge and bothering him, if he's not 100% I will be calling the Dr. about that too.

I figure if you've actually read this whole blog post you are either very bored or perhaps you truly are concerned about Luke's journey, of which I want to thank you for your continued concern. It goes without saying that we sure could appreciate some prayers this week: Luke needs a miraculous touch in his lungs, Zeke needs a healing touch in his tonsils, all the mom's coming to the retreat this weekend need peace about leaving their precious little ones at home, their children and family all need to be healthy so that they can come knowing that all will be fine at home, I need an extra portion of strength this week and my good friend Mary is going in for surgery in the morning, please keep her in your prayers.

Love in Christ,
Luke's Mommy Sue

Friday, October 14, 2011

Erk, Luke has pneumonia once again

This morning I was not surprised to find out that Luke once again has a very bad pneumonia, especially after the nightmare night we had last night. His blood work came back showing that he is brewing a huge infection and his x-ray showed that he has pneumonia in his right lower lobe. The Dr. sent an e-mail telling me about the x-ray and then followed up with a call saying that I needed to get him in there ASAP so that he could get a double shot of antibiotics and then I could pick up his prescription of the other two whopper antibiotics that he will need to be on the next 10 days. He also said if we don't see remarkable improvement by tomorrow then we will need to take him into the hospital.

Here's Luke right after getting his double whammy antibiotic shots

I'm thankful to report that he is doing a little better tonight, though he is still alarming about every 15 - 20 minutes, it's nothing like last night, thank goodness. My prayer is that by tomorrow all the antibiotics that he is currently on will start to kick into high gear and he will start to make a speedy recovery.

We did end up having Amy's birthday party last night, I think we had 24 people come, can you say crazy, yep that's what we are crazy. It was very stressful because Luke was still not doing very good and with that many people over he was even more stressed. Oh well life has to go on, that's what keeps our family healthy, trying to balance Luke's needs with everyone elses, sometimes we suceed at that and other times we don't. We will keep trying to get it right as long as we have to, as we don't have many other options at this time do we?

I'm going to try to go to bed now, hoping to get a few hours of sleep tonight as I have a list a mile long of things that I need to get done tomorrow and then tomorrow night is my graduation/auction for the Pierce County Leadership Advocacy Class I was a part of this past year. I'm glad I was part of that class, I learned so much, but I'm also glad it's one more thing that I won't have to worry about anymore.

It goes without saying that your continued prayers for Luke to get better would be greatly appreciated. Also prayers that I will be able to get all the things I need to get done for the retreat pulled together, as it will be here next week. And last but not least for all the mom's coming to the retreat and their children to be healthy this week and the entire time they are gone.

Thank you,
Luke's Mommy Sue

Thursday, October 13, 2011

Sometimes I feel like a broken record, sorry:-(

I want to start by apologizing to you if you feel like you are reading a recent post, because that is what I feel like I'm doing, writing the same thing over and over again. Luke is very, very sick it started yesterday while I was at the Dr.'s office for Zeke and myself. Zeke and Lily have been battling a very sore throat, headache and fatigue all week long, Zeke's tonsils were so big yesterday I took him into to get them checked out and thank goodness no strep, just some nasty virus going around. I went into have my knee checked out as it was swollen and I had been in so much pain the night before that even after taking 4 ibuprofen I was still crying from excruciating pain, thank goodness it's feeling a little better today and Lily is feeling better too, Praise God.
Here's Luke and I at one of his many, many, many Dr. appointments he's been at lately
Not sure what's going on with Luke he just out of the blue began to throw up yesterday during his lunch feeding, I then picked him up so that Gordy could change all the bedding underneath him that had been soiled from throw up and felt he was burning up from fever. His whole body was shaking, I didn't even realize he had a fever, to come to find out it was 104 was terrifying. We immediately gave him some Tylenol praying he would keep that down and I ran to Target to get some Ibuprofen as we often have to do both when dealing with this type of fever.

Needless to say it was a very long, long, long, long night, I didn't climb into bed until 7 am. I called first thing this morning to take him into the Dr. and we are going at 1 pm. Currently his fever is down to 101, his heart rate is down too and he's not needing as much oxygen, which is good news. PLEASE pray with me that we catch whatever he has going on quickly as next week is the retreat.
Here's Amy and her boyfriend Lance at Mt. Rainier last September
Last but not least today is my precious Amy girl's birthday, she is 24 years old. We are planning to have 20+ people over tonight for pizza and birthday cake. Will you please pray that it will be a wonderful birthday, I have much to do today to get the details pulled together for the party and I'm running on just about no sleep. I just have to remind myself that I can do all things through Christ who strengthens me, over and over again today.

Love in Christ,
Luke's Mommy Sue

PS PLEASE pray for Abbie, she is back in the PICU today. Tiffany is one of the mom's coming to the retreat next week and she needs Abbie to be healthy.

Wednesday, October 05, 2011

Oh my goodness, what a really long day:-/

My really long day began to get exciting this morning around 3:30am, after staying up way too late working on some stuff that I needed to get done I finally was trying to go to sleep when I began to be awakened by Luke's oximeter alarm going off. At first I thought it was him just needing more oxygen, but then realized it was his heart rate soaring way too high. After checking to be sure he didn't have a temperature, I gave him a kiss, prayed with him again and stroked his hair, things that will usually help to settle him down, but none of those things worked this time. I then tried to go to bed two more times before I realized that he must be in pain, his heartrate by this time was up in the 160's.

I decided that I better pick him up to see if I could comfort him by holding him on my lap.
We sat out in the living room for about an hour and he finally settled down to where I knew that I could lay him back down and sure enough when I hooked him back up to his oximeter he was back to his normal heart rate. I ended up going to bed around 5 am, Gordy just happened to wake up so I asked him if he would let me sleep until around 10 am, he was working from home today so he was able to get Luke up and bathed for me, what a blessing that was:-)

I actually climbed out of bed around 10:30 am, still feeling severly tired but knowing that I had to get going if I was going to help the kids with their school work a bit, feeling thankful for Amy had got them started on their school work, try to get in at least a 20 minute Pilates workout and my shower before taking off with Luke for his appointments.

We got to the hospital with a few minutes to spare before his CT scan for his hips, then from there took off to get his blood work done and after that went to his GI Dr. appointment. The CT scan went great, he stayed still and it was done within 5 minutes. Getting his blood work was another story, whenever I take Luke in to get his blood work done I always tell the tech to get the best person because Luke is not an easy draw. I don't think the tech believed me until he tried to get a vein in vain for about 15 minutes, he finally called the guy in the next room over to help him and we got out of there 5 minutes later.

Luke's GI appointment was at 2:30 we got there about 10 minutes early, then waited until about 2:45 to be called back and then waited another 1 1/2 hours before we finally saw his GI doc. While we were waiting we saw the dietician who just happened to be very happy to see that Luke had gained back the weight that he had lost in August, plus added an extra 2 pounds. Luke now weighs 50.6 pounds, which is great news, that is unless you are the one picking him up all the time. Thank goodness God has blessed me with strong arms and a healthy back right now:-)

The most discouraging part of today was learning that Luke definitely has at least 4 to 5 gallstones, his GI Dr. thinks that the only solution is have his gall bladder removed. We therefore were set up with an appointment to see a surgeon on October 17th. He told me that gallstones are more common in children that non-mobile that are g-tube fed, because of the continuous feeds, kids like Luke are not able to move the bile out of the gallbladder fast enough, therefore causing the stones.

The thought of another surgery actually makes me sick to my stomach, I don't want Luke to go through another painful experience, I don't want to have to wonder again if he will wake up from another surgery, I don't want to think about spending days in the hospital, I don't want to think about the recovery time, bottom line I don't want another surgery. I know that may sound like a temper tantrum, I guess it is, but it's the truth, the whole truth and nothing but the truth.

One last thing that I find very hard to swallow is the fact that the Dr. asked me today if Luke throws up all the time, I told him only when he is sick. When we got out to the car I started his feeding as we were already very late on that, he began to throw up when I began to feed him and he is still throwing up, he has not kept down anything since we left the Dr.'s office. I keep praying that he's not going to get really sick, but I'm just not sure what's going on.

I keep thinking that I don't have time for another appointment with another specialist, but I guess I don't get to make that decision do I? I have details that I still need to pull together for our mom's retreat which just happens to be in 2 weeks, I have schooling to do with my children, I have had lots of speaking engagements the last few weeks, I really need to get over to my parents to help them unpack the rest of the boxes from their move last month, I have one of my dearest friends in town and we had planned to spend some time together tomorrow as she only visits here every few years, I really need to deep clean my bathroom, go through my closet and drawers, sort through a pile of mail that is about 2 feet high and the list goes on . . . . Oh well, I'm sure your list is just as long, right????

Your prayers would be so appreciated that Luke would stop throwing up, that he would not be in pain, that God would miracuosly take away the gallstones, that his breathing would start to sound better, that Isaiah who's been battling with some sickness this past week would get better, that Gordy and I would be able to get caught up on our sleep and that the details for the mom's retreat, along with the rest of the money will come together soon.

Thank you for your faithfulness,

Luke's Mommy Sue

Here's a picture of Gordy & I out on a date last Friday night. We went to the Lakes High School Football game and then we went to see Courageous, which is one of the best movies I've seen in years. Please find time to go on a date with your mate to see this movie, you won't be sorry!

Tuesday, October 04, 2011

The Good, The Bad and The Ugly News about Luke

The good news first: Luke is doing so much better lately, he's a lot more alert and happy, he's been gaining weight again and looking good. Yesterday we were invited over to our good friends the Young's home for their annual Harvest/Apple Pressing Party. They had over 100 people in their home and yard, it was supposed to be an outside affair, but we had one of the worst rain storms we've had in a long time shortly after the party began, Isaiah, Ezekiel and Lily got soaking wet playing outside, but they had a blast:-) Luke did great he stayed awake the entire time, which for him is amazing, you see when Luke is uncomfortable or stressed he will usually just fall asleep so the fact that he stayed awake the whole time tells us all that he had a great time. It was humbling and amazing to meet the people at this party most of them attend a church near by our home and many of them faithfully pray for Luke weekly. As they would come up to meet Luke and myself they would tell us how they have prayed for Luke for many years and many with tears in their eyes would say how wonderful it was to finally meet Luke.

Here's a picture of the day we spent at Mt. Rainier last month
The Bad news to report about Luke is that as I mentioned in my last post he's been having some pretty bad seizures. He's had seizures for a long time but they were usually only caused when someone would touch his right hand without telling him first. But lately the seizures were coming more often, lasting longer and very scary to watch. I actually have seen him have some really bad seizures at night, which has answered a question that I've had for along time, what causes Luke to go to bed with great numbers on his oximeter only to have them all change within a matter of time. When I watched one of the seizures he had at night I saw him go from breathing beautifully to gasping for breath, sneezing and then his o2 numbers would plummet and his heart rate would go up. We started him on a new medication called Banzel, just last week as we had to wait for it to come into our pharmacy as it is a new med to America, it had only been available in Canada for a long time. The medication has some pretty bad side effects, which scare me to death, but getting the seizures under control is more important right now than the side effects. It will take 5 weeks to get him to the full dose as it is such a potent medication it would be dangerous to start him off on the full amount right away.

The ugly news came as a big surprise today when I called our insurance company and found out that they are no longer paying for Luke to have OT/PT services. When I took Luke into see his OT last week he mentioned that the billing agency for the hospital told him that Luke no longer had PT/OT services, after calling around he thought that was incorrect information, but no after spending about 30 minutes today on the phone I found out that our policy no longer covers his diagnosis. It sent me into a real spin as I realized that we could be getting a HUGE bill from the place that he's been going to the last few months. I was also so sad to realize that something that has benefitted Luke and helped him will no longer be available to him. It's sad to think that if Gordy and I made less money we could get services for free, kids that have SSI or DSHS through our state get at least 1 visit of each PT/OT/ST a week. We get NONE because we are middle class Americans. Our Medical system is broken and I'm pretty sure that the new OBAMA care is not going to fix it. Everytime Luke walks into the Children's Therapy Unit where he was going for PT/OT it would cost about $500 a hour, our insurance would pay their adjusted amount leaving us with a bill of about $80 a visit, now we would have to come up with the full amount, not going to happen:-( Oh well, I just hope that we will be able to successfully appeal this and get it to return.

Can you spot Amy, Luke, Lance and myself off to the right of the bridge??
Once again I'm up way too late blogging tonight, I'm hoping that since I just went to change out Luke's oxygen tank that he will not alarm anymore tonight so that I can get a full night of sleep, it's been way to long since that has happened. Oh wait the night is already about 1/2 way over maybe that will happen tomorrow night, I can always hope can't I?

Love in Christ,
Luke's Mommy Sue

PS Just wanted to let you all know that the money for the retreat has been slowly but surely coming in, not quite there yet but a whole lot closer, PRAISE GOD!!

PSS Also wanted to let you know that I'm going to be on 24/7 MOMS webcast tonight. Here's the link:

Double The Fun Double The Giveaways - This week on 24/7 MOMS Live

Double The Fun this week with my long time girlfriend Sue Searles who will share 21 Tips To Raising Great Kids and Double the Giveaways as we kick off the holiday season early.

Chatting, winning and being in the MOM know are what it is all about. Don't miss out join in the mom fun.

Two shows Two times right here at 24/7 MOMS the TV show for moms on your computer at The mom chat and fun all begins on Tuesday night at 6pm PST or 8pm PST .