I suppose some of you thought I fell off the face of the earth! Sorry it’s been a few days between posts but we are all alive and kicking.  I worked three nights in a row Saturday, Sunday and Monday, and it’s been an adjustment trying to get into some sort of routine.  Ryan is still having the retching episodes that last an hour, easily, in the morning and at night.  We’ve been giving him Robitussin several times a day to see if that helps but have had to really play around with his meds; we still haven’t figured it out.  This morning I unhooked his pump for an hour after I gave all eight of his meds to see if that would help and while he got the same fear in his eyes and grabbed for me like he does right before his episodes begin, he simply burped a couple of times and settled back down although he wouldn’t let me get away from him for almost an hour.  I wish he could tell us what bothers him and what he’s feeling in his abdomen.  It’s really a big guessing game and we are just trying to figure out what works and what doesn’t.  We are supposed to call the GI doctor tomorrow so we’ll see if they have any ideas.  Right now we are spending an hour three times a day trying to keep him from being uncomfortable.  With six meds to give twice a day plus two meds to give three times a day, we can’t spread them all out too far or we won’t get anything else done.  One of these days we’ll find something that works!

As hard as this new transition has been, especially with Travis losing his job and trying to figure out what exactly he is supposed to be doing, we have been so blessed.  There is no doubt in either of our minds that Travis working part-time right now so he can be home all day with Ryan is the right choice.  We are disappointed we won’t be able to get some of the projects done around our house we had on our list of things to do nor will we be able to pay down some debt as fast as we’d like.  But in the long run those things really don’t matter; what is important is that we are taking care of the gifts God has given us – our family.  And every single day since we’ve been home, God has shown us in one way or the other that we are right smack dab in the center of his will and he is taking care of us.  It’s amazing to see first hand how he works through other people.  We  have been blessed with boxes of goodies, gift cards, financial help, meals, people coming over to pray with us, phone calls and emails.  I can honestly say I’ve never been so humbled in all my life.  If ever I’ve needed proof that God provides, I’ve seen it first hand these past few weeks.  I continue to pray Proverbs 30:8-9: Keep falsehood and lies far from me; give me neither poverty nor riches, but give me only my daily bread.  Otherwise, I may have too much and disown you and say, ‘Who is the LORD?’ Or I may become poor and steal, and so dishonor the name of my God.  And he has done exactly that – given us exactly what we need, no more and no less.  My paycheck on Friday for the two weeks prior ended up being $56.53 because I ran out of time bank very quickly with Ryan in the hospital for four weeks.  The hours I did have all went for our insurance, 401K and taxes.  But God has been providing just enough to pay our bills and keep food on the table.  We keep telling the kids, “God knows exactly what we need before we even know we need it” and they have been able to see his provision for us too which is amazing.  I’ve learned more than anything else these past few weeks to store up my treasures in heaven, not here on earth.  It’s a concept I’ve been familiar with my whole life but never have I really seen it in action and felt God’s provision like I have this past month. My faith has grown these past few weeks like I have never experienced and I’m amazed at the peace that comes when I continue to put my faith in His plan.  Just like 2 Peter 2:2-3 says: Like newborn babies, crave pure spiritual milk, so that by it you may grow up in your salvation,  now that you have tasted that the Lord is good.  Why God is allowing things to turn out as they have I don’t know.  But I do trust that his plan is so much bigger than what I see.  He sees the big picture and my job is to trust in his perfect will and do what he has called me to do right now – be a living testament to his goodness and show others the love of Christ.  I simply have no idea how people live without Him.  Christ came to give us life – eternal life – and I’m so thankful for the grace he gives to see us through our time here on earth.  I hope my life is a living testament to His love and grace. 

The other kids are doing much better now that we are all home and back into some sort of routine. They seem less stressed and are getting very excited for spring break next week.

Here are a few pictures from our time here at home.  Ryan was able to get out yesterday to the store with Travis then we took him to school to see his paras, teachers, nurse, other staff.  Everyone was so excited to see him but he got overwhelmed after about twenty minutes there.  He wears out so fast but who can blame him after lying in a hospital for four weeks and having brain surgery too.  He’s doing as good as can be expected and we are letting him rest as much as he needs which seems to be a lot. 

Ryan snuggled up on our ride home from the hospital last week.

Playing with his toys wearing his feeding pump in the backpack.

This is where he spends most of his day lately….on the couch, usually sleeping.

His feeding pump is on the floor next to him.

This is what the inside of the backpack looks like and how he carries the pump and bag around.

It’s probably time to update people about Travis’s job situation since I know a lot of you have been praying, and we appreciate it so very much.  We really do.  Because the state came in and basically took everyone’s jobs at KVC, ended their contract, and completely cut the department Travis worked in, there isn’t a job to apply for at Health and Human Services.  He basically is back to square one trying to figure out what to do with his life now.  So….with so many unknowns with Ryan’s health and not knowing when he’ll be able to go back to school – good grief we are still praying every day we can keep him out of the hospital! – we have decided Travis is going to stay home with him and work part time at the airport.  He had a part time police officer job at the airport for the three years he was in school getting his masters degree and still has that position. For the past several months he’s worked sporadically and been able to fill all the shifts with other officers.  Thankfully he is able to get all those shifts back and as of this Friday, he will work there about 18 hrs a week.  Travis has formed some great relationships with everyone there and it’s a stress free job he enjoys with flexibility when needed.  I will continue to work full time at my job in the ER and stay on the night shift at least until things settle down and we have a better idea of how long term all Ryan’s new health issues are and what exactly we are facing.  We’ve just come to the point that we have to prioritize what is more important – making money or taking care of Ryan.  We have to believe Ryan’s medical issues and Travis losing his job in the midst of it all whas not a mistake.  Maybe this is simply God’s way of telling us he wants Travis home and we are to trust him to take care of everything else.  God has certainly been faithful these past five weeks providing exactly what we need when we need it.  I can’t start doubting his perfect will now.  Yes it’s scary not knowing how all this is going to play out but I’ve figured out my job is to simply trust. 

Ryan is the same.  He’s still retching throughout the day but he seems a little more awake and happy today.  He still hardly gets up from the couch but we have made him walk around the house a little.  Thankfully he has absolutely no interest in eating or drinking anything which is good since his stomach isn’t handling even a teaspoon of fluid. He has had a lot more fluid draining from his stomach so we aren’t sure if this is the beginning of his intestines shutting down again or just some fluke thing. Whenever his small intestine starts to slow down, he gets the increased stomach drainage we are seeing.  So far we aren’t seeing any formula coming back up, but it’s very nerve wracking not knowing if he is going to stay as he is digesting the formula through his j tube. I hope we are able to keep him out of the hospital and still figure out what to do about this retching.  It certainly wears him out and has got to be uncomfortable.  But in true Ryan style, he puts that smile back on his face and keeps going. 

Travis and I both have peace about the choice we made together for him to be home during the day.  In fact just this week at a sort of farewell lunch, he and his coworkers were all talking about what everyone is going to do now that they are all looking for jobs.  Travis said his dream job would to be a stay at home dad.  Of course I was not at all surprised.  We both would love to be home all the time with our kids and only work a few hours a week.  But I’m thankful I have a husband who is so committed to our family and does such a great job running our home with the kids, all Ryan’s medical needs, cooking, cleaning, laundry, bills, errands.  We certainly don’t have an average lifestyle but it suits us and we feel we are exactly where God wants us to be right now.  Some day that might change, but for now, our kids are what is important.  Yes we have bills, debt we’d love to pay off, things that need to be fixed around the house.  But some day when we look back, I guarantee you neither of us will be upset we did what God was calling us to do and keep Travis home during the day.  So we might have old linoleum on our bathroom floors, walls that need to be painted and carpet that needs to be replaced. At least our house is clean, comfortable, inviting and filled with love.  I guarantee you when our kids are grown they will not remember those petty things that weren’t exactly perfect.  There are three Bible verses I’ve really been focusing on believing God knows exactly what he is doing and is going to provide what we need when we need it.  He’s going to take care of us; he knows our daily needs, and we are going to walk by faith every day trusting him to provide.

II Corinthians 12:9 ~ My grace is sufficient for you, for my power is made perfect in weakness.

Proverbs 30:8 ~ Give me neither riches nor poverty but give me only my daily bread.

Isaiah 26:3 ~ You will keep in perfect peace all who trust in you; all whose thoughts are fixed on you.

This will be short because there isn’t really anything new to report.  My dad was here this morning and stayed for lunch; Travis’s parents were here too. It was nice to have them all with us and we had a nice time together.  Ryan is doing the same.  He has been retching after meds and also sometimes when he changes positions especially going from lying down to sitting.  We have no idea why this is happeneing but his tube feedings are going well which is very good.  We’ll let the doctors know on Monday what is going on and see what they have to say.  We’ve been giving the Robitussin three times a day since last night so we’ll see if it ends up helping with the retching.  I have to work tonight and Sunday but otherwise things here are good with everyone else.

It’s been a very long day.  Long story short I spoke with both our pediatrician and neurologist’s nurses (can I say again how blessed we are to have great doctors with wonderful nurses!) and we are now giving all Ryan’s meds through the j tube and nothing at all into his stomach.  The problem we discovered is that within 15 minutes of giving meds, he starts retching again.  It didn’t happen this afternoon but tonight when we gave his meds into his small intestine, he had problems.  Travis’s cousin I mentioned earlier came to the rescue and we talked on the phone four times today.  She has been an absolute blessing and gave us lots of very useful information since she’s been through all this.  From her expereinces and advice, we are going to try giving Robitussin four times a day through his tube and see if that helps cut down on the dry heaving.  It worked for her little boy so it’s worth a shot.  Anything to keep him comfortable and out of the hospital.  The poor little guy is so tired and has slept nearly all day.  I would guess he has been awake for maybe five hours since he got out of bed at 8 am this morning.  He’s so worn out and has exhausted both Travis and me today as well.  This is so frustrating and stressful and I never imagined what a pain in the rear all this stomach stuff is.  It makes the seizures seem easy in comparison but that’s what we’ve known for years.  All this gastrointestinal stuff is new to us and having him hooked up to tubes and all that is not in our comfort zone at all.  Yet.  I know with time this will all become very familiar and get much easier but right now, we are not enjoying it one bit.  It’s kind of depressing to see that after a month since his brain surgery, we are worse off than when we started.  Don’t get me wrong; the surgery was a complete success and there was no way to know this would happen.  And who knows if it’s temporary or our new normal.  We’ve never had a diagnosis so we have no idea if this is some random unfortunate event or if it’s a progression of all the brain damage from seizures Ryan has endured.  Not that it really matters, because it’s not going to change the fact that this is hard.  Travis slept on Ryan’s floor last night and tonight they are sleeping on the couch together.  I have to work Saturday and Sunday nights so who knows when we’ll get to finally sleep in the same bed.  There’s something so comforting about sleeping next to your spouse.  We’ve been married for nearly 18 yrs and with everything we’ve been through, we’ve never gone this long like this.  I know it’s going to take time to adjust and I hate to complain.  I’m not trying to and I certainly don’t want anyone feeling sorry for us.  I’m just trying to keep you all in the loop so you know how to pray.  I know so many of you care and walk this road with us by choice, not because we ask anything of you.  We appreciate the support you give us with your kind words, prayers, the food and cards and help with groceries, gas and food.  I am so humbled right now and feel like a charity case which I hate.  But someone very wisely told me last week, and I have to believe it’s true, that maybe God is allowing all this to happen to us at not because he wants us to learn to be good receivers (I’d much rather be on the giving side) but because God wants to teach others something through their giving.  I have to believe something good is coming from all this somewhere. I know I’d much rather be in a very boring place right now and be able to honestly say nothing is new and I don’t have a thing to talk about.  Then again, when do I ever not have something to say?!  Everyone knows I’m the talker in the family.  I just wish I had something else to talk about!

It hasn’t been an easy transition coming home.  Last night we were all here but emotions were high all around.  One kid started crying when they saw the feeding pump.  Another was crying and saying “I’m afraid Ryan is going to die” and “I just want the old Ryan back”.  The other was grossed out by the whole idea of feeding through the tube.  I couldn’t relax so I spent the evening reorganizing all of Ryan’s meds and supplies.  We went from five medications to nine.  We have to give five of them in the j tube (small intestine), one of them in the bag with the formula, one through the g tube (stomach) then ninety minutes later give the last two through the g tube.  And we do this routine three times a day.  This is a whole new world for us, and we still haven’t figured it all out yet.  Last night Travis slept on the floor next to Ryan’s bed to make sure everything went OK with the feeding pump.  It alarmed once during the night so now we need to go buy a baby monitor so we can sleep in our bed and hear the pump during the night that way.  Travis and I still have yet to sleep all night in the same bed since January 28th.  Then this morning after all the kids got to school, Ryan started dry heaving and he had five episodes in an hour but would sleep in between the retching.  Thankfully that stopped but it was tough to see that when we just got home because of course it wasn’t happening in the hospital.  I called our pediatrician and we have some Zofran and are trying this new medication schedule to see if it helps.  He is taking Erythromycin which is an antibiotic but for Ryan it is supposed to try to stimulate gastric motility to see if we can make his stomach work again.  It is known to cause stomach irritation and throwing up so if this continues we’ll probably have to take him off of it. But of course in the hospital the Erythromycin never made him retch like this.  Ugh.

Otherwise, Travis is in the office today helping file and get all their records in order.  His case management files are all closed and he is done with his clients.  He’s simply helping out where he can through next week but today will be home around noon.  We have hardly talked about the future because we haven’t had any time to discuss things that important so I can’t tell you what his future plans look like.  Time will tell. 

I work this weekend and went to work Wednesday too while Travis was at Children’s with Ryan.  It was nice to see my work family and finally do something focused on everyone else.  The kids are all having sleepovers tonight with friends and I’m thankful we have been able to keep their lives as normal as possible.  It’s not fair to them to disrupt time with their friends because of everything their brother is going through.  They have such a hard time dealing with all this and I don’t think anyone truly understands the stress they feel.  It’s hard for Travis and me to handle because we feel so bad for them. 

I talked to Travis’s cousin this morning for a long time whose son was born with kidney failure and has had all kinds of GI trouble. He is a miracle and is waiting for a transplant.  She is a great encouragement helping me navigate through these changes and had lots of tips and insight the doctors never tell you.  It’s the perfect example of why special needs parents need have such a wealth of knowledge!  Please pray for them too as God brings them to mind. 

We’ve been very blessed with some people who have stuck by us through thick and thin and continue to be amazed at how God meets our needs on a daily basis.  Proverbs 30:8 says so well what seems to define our lives these days: “give me neither poverty nor riches, but give me only my daily bread”.  God does not give us more or less than what we need, just enough to sustain us every day on this journey.  This new place we find ourselves in is quite the adjustment and we have no idea if Ryan’s stomach will ever work again.  Of course we pray it does, but if not, we will accept whatever God gives us.  Ryan brings so much joy to our lives and even during those times like last night when I locked myself in the bathroom and sobbed for a good 20 minutes, I know we are not alone.  I have nothing without hope in Christ and I have to tell myself every day to keep believing in His goodness.  This is not an easy transition but like every other battle we’ve faced, we’ll keep our heads held high and keep pressing on.

We are going home soon! Just waiting for the nurse to clarify a few things with the doctors then we can go home. Ryan has been sleeping most of the day, but I think he will be very excited to be back in his own bed finally! We were trained on his new feeding pump and I will take pictures to post tomorrow. We are both a little nervous about these changes but it will become familiar soon. Ryan is very weak as you can imagine and it will take some time to regain his strength. But tonight we will all be together again!

If all goes well tonight and tomorrow, we get to bring Ryan home Thursday afternoon.  Two whole weeks at Children’s and the end is in sight!  It’s going to be a big adjustment but at least we’ll all be under the same roof.  Travis is with Ryan and I am at work tonight; we have been using face time which is fun so we can all see each other.  Ryan is happy and comfortable thankfully.  He had another large bowel movement this morning which just confirms that his bowels are awake finally and obviously moving. I don’t know that anyone has ever been so excited about poop!  His stomach is still another story.  The plan for tomorrow, at least for now, is that we will meet with home health in the afternoon to get the feeding pump Ryan needs to be on 24 hrs a day, learn how to use it and then get discharged.  I’m sure home health will follow up with us once we are home but I’m not sure how often.  They still don’t want Ryan eating or drinking anything by mouth and we have no idea when that will change.  All his nutrition for now will go through the feeding pump directly into the j tube which feeds into his jejunum (small intestine).  It’s going to be a huge adjustment having him on a pump that has to be with him all the time and even bigger adjustment not letting him eat.  The poor kid won’t understand, and that simply breaks our hearts.  There isn’t much that gives him joy but eating his chunks of cheese, Cheerios and eggs is something he loves and very much a part of his routine.  Hopefully his stomach will start working again so we can get him back to his normal.

In the last five weeks, Travis broke his foot, had surgery to put a pin in it, Ryan had brain surgery, he’s had three stays in three different hospitals, two trips to the ER, an ambulance ride to Omaha, a PICC line, TPN nutrition for 12 days, Travis lost his job last week, surgery to put a g/j tube in, 24 nights in the hospital, only two nights as a family under the same roof, Travis and I have not even slept in the same bed since January 29th.  Wow….that wears me out just thinking about it!  Yet during these difficult and emotional weeks, we have been so very blessed by many of you.  I can’t tell you how much it means to be cared for.  We’ve received meals, cards, money, visits, encouragement, help with our older kids, prayers.  It’s hard not to feel like a charity case, but we realize we are loved and can not express our gratitude for all the support.  I don’t know how we would have made it this far without family and friends, even from some people we have never had the privilege to meet. 

I don’t pretend to understand why all this has to happen at once but I have seen the goodness of God every step of the way and know He will continue to provide what we need.  I keep saying he knows what we need before we even know we need it.  And we are so grateful.  There are still so many unknowns and stresses with Ryan’s health and Travis’s future employment, but hopefully Ryan will continue to improve so our coming home plans don’t change.  Now that will be something to celebrate. I’ll let you know tomorrow!

I know, what a title for this post. But it’s true!  Ryan pooped. All by himself! That means his small amd large intestines are working. I nearly cried I was so excited. And my dad was here to share in the smelly but happy event. He is now at the hourly volume we were hoping for.  Tomorrow he should be on formula instead of Pedialyte and will hopefully be getting some of his seizure meds through his feeding tube instead of the IV. At least now we know his intestines are working which we weren’t sure about. His stomach is another story as we don’t know if that is emptying at all or if it’s just slow but hey, we have poop which is a big step in the right direction!  I’m laughing at myself for being so excited about this but with the month we’ve had, I’ll take it!

All the doctors have been by this morning, and we have the plan for today all lined up. I gave Ryan a bath and he screamed in protest the whole time because I used a baby brush to scrub his incision. He is healing nicely and the stitches are finally falling out. The nurse just hooked him up to the feeding pump, and he is getting 10 cc or two teaspoons of Pedialyte an hour for now. If he tolerates this we will continue to increase every four hours or so until we get his volume up to 70cc/hr. If he is still doing well we can switch him to formula and he will eventually go home on 24 hour feeds. That will be a huge life change for us, especially because he won’t be able to eat anything by mouth which he won’t understand. And the idea of that just breaks our hearts. With his severe developmental delays, there is no way for him to understand all this. He absolutely loves his morning routine of watching cartoons then eating Cheerios and eggs. And after school it’s always cheese chunks and Cheerios.  He’s not going to understand why he can’t  enjoy those things anymore. For now the general consensus is that his stomach is not working. We are hoping his intestines are working and will know for sure by the end of today or tomorrow. If his intestines do absorb these feeds and he can go home on the feeding pump, there is still hope his stomach might wake up eventually but it is possible he has permanent nerve damage. We simply don’t know yet, and unfortunately this is all a very slow trial and error type of situation. He is getting all his medication through the IV but we are hoping to be able to give them through the j tube eventually so he will have the seizure control he needs. The IV seizure meds aren’t the same so he has had increased seizure activity we have had to control with extra doses of Ativan. I’m not sure how well you’ve all been able to follow along as to what exactly we are dealing with since even the doctors aren’t sure how much permanent nerve damage there is. This has got be confusing to some of you, and I’m sorry.. No one knows if this all happened because of surgery since both hemispheres of his brain were manipulated to get to the corpus callosum which was cut.  Thankfully surgery was successful to stop the huge seizures that were dropping him to the ground and knocking him off chairs. But now we have this lovely intestinal problem that very well could be caused by the progressive brain damage from the continual seizures. No one could have possibly predicted this would happen and we certainly don’t blame our wonderful surgeon. I continue to stand by my belief that God is allowing all these difficulties right now for a reason we simply don’t understand. If you want some ways to specifically pray for us, pray for complete healing of Ryan’s intestinal tract, wisdom for the doctors, strength for Travis and me since we don’t  have any time together trading back and forth from hospital to home, the older kids who feel the stress and are scared, for direction for Travis regarding future employment, for me as I have to go back to work Wednesday night since I used up my time bank two weeks ago and will be completely exhausted mentally and physically, for our finances in the months to come, and most important of all, that we will honor God in how we handle these difficult circumstances.  Thank you for your continued love, support and prayers.

Ryan is going to the GI lab today to have a g/j button put in. Instead of giving you a big explanation, I’m copying a post by a special needs mom I found on the Internet; she did a great job explaining exactly what is going on so read the link if you can. There are pictures of the button he is getting too.

http://ourspecialneedslife.blogspot.com/2009/06/all-about-gj-tubes.html

He already has a g button in his stomach so they will take it out and put the g/j tube in its place. My friend Candy will be with me all day. Please continue to pray Ryan’s bowels will wake up and this procedure will work. And we would greatly appreciate your prayers for Travis. He is in the office for the last time today, and I know it’s going to be a rough day. We simply can’t question the will of God right now and continue to trust He knows what he is doing. I can’t navigate through the fog to see what is ahead but I trust he has prepared the way. I’m certainly not enjoying the events of our life right now but in the midst of the stress and worry, I can honestly say I have not lost my joy.  I’ll update after his procedure.

Jeremiah 31:25 ~ For I have given rest to the weary and joy to the sorrowing.

Above all, trust in the slow work of God

We are quite naturally impatient in everything

to reach the end without delay

We should like to skip the intermediate stages.

We are impatient of being on the way to something

unknown, something new. And yet it is the law of all progress

that it is made by passing through

some stages of instability-

and that it may take a very long time.  And so I think it is with you.

your ideas mature gradually – let them grow,

let them shape themselves, without undue haste. Don’t try to force them on,

as though you could be today what time

(that is to say, grace and circumstances

acting on your own good will)

will make of you tomorrow. Only God could say what this new spirit

gradually forming within you will be. Give Our Lord the benefit of believing

that his hand is leading you, and accept the anxiety of feeling yourself

in suspense and incomplete.

It’s been a busy day.  I took the older kids to church then we picked up Trevor at a friend’s house and headed to Omaha. After lunch and a couple stops we came to the hospital and had lots of company. My dad and stepmom were here while Travis went out to lunch with a wonderful friend then Lyndsey, our respite provider and dear friend, came for a while. I also missed some friends who came earlier and visited with Travis. We are so grateful for the love and support! It means more than you all know.

Ryan was put on Erythromycin today which we tried just once last week. It’s an antibiotic that is also used for gastric motility, and he is getting it three times a day.  We should know by tomorrow night if it is going to work or not because either he’ll be passing gas and hopefully stool or nothing will change. I had a long talk with a doctor today who said she is hoping the GI doctors will agree to a dye study which will tell us through a series of X-rays if anything is moving from his stomach through his bowels. They all seem to think at this point he has a paralyzed bowel due to virus which is the most likely and expected problem or that he could possibly have a stricture somewhere in his intestines  – a narrowing not allowing things to pass. His bowel sounds continue to come and go (listening to his abdomen with a stethoscope) but his belly remains soft and non tender to the touch even though we think he has gas pains and/or abdominal cramping that comes and goes.  It’s still a frustrating mystery as to why this is all happening. The X-rays do not show an obstruction and there doesn’t appear to be air in his bowels. We’ll see what all the doctors think in the morning. It will be Monday so we have to start over with a whole new group. Maybe that will be a good thing. We’ll see. This is our tenth day here…..ugh…..And we’ve gotten no where but right back to all IV fluids and nothing through his stomach. I wish there was an easy solution to all this but it appears at this point we will be camping out here for quite some time. I’ll update tomorrow.

Ryan is throwing  up again. We were suppose to have a meeting at 12:30 with the home health nurse today then be discharged this afternoon. In the last hour he threw up several times and the few bites of chicken he ate last night came back out totally undigested.  He’s very tired and obviously we are heading in the wrong direction again. It sounds like he will end up needing to be scoped but we are waiting for GI doctors to come see Ryan then we’ll know more about what is next. To say the least, this is very discouraging but I have to say we are so glad he threw up here and not after we got home. Please pray for answers and for strength for all of us. What a hard few weeks we’ve had. I simply can’t put into words how difficult this path has become with everything else that’s happened this week. Our older kids need prayer too; they will be very discouraged when they find out Ryan can’t come home. We’ll keep you updated. Promise.

After I slept for almost eleven hours last night, I had a wonderful morning with two sweet friends, Julie and Lisa, then went to lunch with my sister and niece.  It’s been a much needed, very nice day so far.  Both the boys are having sleepovers at friends’ houses tonight so it’s going to be a girls’ night out for Sidney and me.  I’m excited to spend some one on one time with her.  Travis has been working with home health today getting things lined up for Ryan to come home tomorrow.  From my understanding, Ryan will be hooked up to the feeding pump several times a day for 3 hours each time for a couple months. Before his brain surgery and ileus, he was getting three cans of formula a day through his g-tube but we did it to gravity so it took just a matter of minutes to put it all in his stomach.  He isn’t able to handle that much volume right now so we have to change our plans.  I don’t have all the specifics but we will have a meeting tomorrow afternoon with the home health nurse so we know exactly what we are doing.  They did another abdominal xray this morning and Travis hasn’t heard anything on that yet.  If all goes well, I will head to Omaha after Sidney’s volleyball tournament so Travis and I can do the meeting then bring our little boy home.  The good news is that he should be off the IV TPN today so we won’t have to worry about that.  There are still some outstanding labs we haven’t heard back on but overall, Ryan is much better than he was a week ago when he went in.  He still hasn’t pooped and we aren’t even sure his large intestine is functioning yet but they are hoping to work on that today and  he is tolerating the formula they’ve been giving him for the past few days.

Travis and I are doing OK otherwise.  This is not an ideal situation by any stretch but we have been so blessed this week by the generosity of others and are humbled beyond words.  We know God has a reason for his timing and that all things work together for the good of those who love Him and are called according to His purpose.  We simply don’t understand it.  Please continue to pray for Travis as he starts the job search again.  We believe God will meet every one of our needs; he knows what they are.  Thank you just doesn’t seem like enough to tell you all how much we value your friendship, prayers and support. 

Normal……not even sure if there is such a thing. We all lead such different lives that normal for you is much different than my normal. I struggle with the events of the past four weeks and wish I could say things are getting back to our normal. But the farther into this we get, the more things seem to change. If I ever had security in health or a job, I certainly don’t now. I never imagined I would be sitting here on day six of my son’s third hospitalization in three weeks wondering when we’ll ever get home again. I certainly didn’t think my husband would be hobbling around post op with a foot that still gives him a lot of pain and is extremely swollen three weeks after his own surgery. And never in my wildest dreams did I think he would have to sit at home working on his resume to start over with the job search while I sit an hour away with our son trying to get his digestive system to wake up. February has not been a good month for us. But as I say that, I have to contradict myself and tell you that in spite of difficult circumstances that simply don’t make sense or feel anything close to my normal, we have been so richly blessed. So February may have brought two surgeries, three hospitalizations, medical bills, stress, missing family and the loss of a job. I can’t change any of the circumstances we are facing. We did nothing to cause any of it, and we certainly can’t do much to fix any of it either. But what I can change for myself is my attitude in how I deal with it all. It would be very easy to  give myself permission to feel sorry for myself, to wallow in the poor me attitude, to doubt the faithfulness of God in our lives. I’m pretty sure both Travis and I have faced enough hardships in the past four plus years to do that. Yet I just can’t do it. Now don’t get me wrong. I absolutely have days when all I can do is cry, be mad, feel anxious. But the circumstances of my life don’t define me. Yes, life is hard, but the choice is mine how I choose to respond to the bumps along my path. And I choose every day, sometimes because I force myself to, to live a life of joy. To realize I may be stuck in the hospital for most of the month, and I may be uncertain about the future, but like I said, I am richly blessed. Blessed by the generosity of others, blessed by numerous cards, emails and meals by people I don’t even know! Blessed by a church body we have barely had time to meet, blessed by the peace of God that absolutely transcends all of my understanding and rationale for the events of this past month. I have the privilege of being able to say, and more than that really believe it in my heart, that my heavenly Father will do what he says he will do, he will go where he leads us to go, he will provide for our needs as he tells us he will, he will never leave us or forsake us as his word promises. This journey isn’t about all the hardships, it’s not about feeling scared and anxious for whether or not we will be able to pay our medical and household bills in a month, it’s not about filling my mind with worry and doubt, it’s certainly not about feeling sorry for myself. The plain, simple truth is that each day, with every breath we breathe, with every step we take, with every word we speak, we are to trust that the same God who created the universe and placed every star in the sky and every piece of sand in the ocean, is the same God who promises to meet our every need. It’s all about simple faith, unwavering trust, giving God the glory no matter what events take place every day.

Ryan is doing a little better each day. Baby step progress is still progress! He is getting his main nutrition from the TPN in his IV and from this morning has more than doubled the amount of Pedialyte he is getting through the feeding tube. In fact the nurse just changed his solution to half Pedialyte and half formula. If his stomach continues to tolerate that, tomorrow we will change him to all formula through the feeding pump. Then eventually we will cut down on the TPN as we are able to increase the nutrition he is getting through his digestive tract. We are still waiting for blood work to come back that will tell us why Ryan continues to struggle throughout the day with itching and hives that has been going on for over a week now. I was able to leave the hospital for three hours today while my sweet friend, Candy, came and loved on Ryan. It was nice to be out in the real world again! I enjoyed every minute of my freedom. Tomorrow Travis is coming back up and I will go home so I can see the older kids. He hasn’t been here since Monday so we are going to switch for a bit. I’ll come back up Friday while the kids are in school so I can actually see Travis since we’ve barely had any time together this month that is worth anything. And hopefully this weekend we can bring our little guy home.

Thank you for your continued love and support. Again, I can’t express how much it helps make this journey feel a little less lonely. You are all such blessings in our lives!

Ryan is doing well today. His PICC line was inserted and the TPN is running. He was also hooked up to continuous tube feedings to see if his stomach can handle it, and so far so good. He has Pedialyte running at only 1 ounce an hour so it’s a small amount but he is tolerating it so far. I have no idea how long we’ll be here but at this rate it will be at least til the end of the week. 

On another note, Travis found out this morning that as of March 1st, he will no longer have a job. His company is contracted through the state and that contract has been cancelled so everyone is losing their job. We would appreciate your prayers. This is never an easy situation for anyone to face but the timing right now sure stinks. 

It’s definitely hard to understand why things happen when they do but I’m thankful that even when I am scared about the future with Ryan and Travis’s job, I can still count on God to go before us and prepare the way. He knew this was going to happen which means he also knows the end of the story. 

If I go up to heaven, you are there; if I go down to the grave, you are there. If I ride the wings of the morning, if I dwell by the farthest ocean, your hand will guide me even there. ~ Psalm 139:8-10

I am confident I will see the Lord’s goodness while I am here in the land of the living. Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord. ~ Psalm 27:13-14

Good morning! Our little guy decided 4:30 would be a great time to start the day although I wasn’t overly excited when I saw the time. Ryan is getting his PICC placed at 8:30 this morning then we will start the TPN. We will try to give him some more Pedialyte through his feeding tube today, and if he is able to absorb it we will keep doing the fluid challenge. If he doesnt digest it, the doctors will think about doing a scope. He is doing well otherwise and doesn’t appear to be in pain. When they place the PICC they will also draw the IGG and IGE labs that will be back later this week and hopefully tell us why his skin is hyper sensitive.

Travis is home with the older kids who are holding up under all this stress. They each are having moments when their emotions all come undone but overall they seem to be OK. It helps that they have had a lot of time with grandparents lately. Travis is full weight bearing now and is in a walking boot. His foot is still very swollen now almost three weeks out from surgery and he is still having some pain but he’s getting along OK. We will all be so happy when we can be home as a full family again. I’m ready for the normal mundane even if it’s going to now include Ryan being hooked up to an IV. It will just be a new normal and eventually we’ll get used to it.

I just have to keep telling myself God knows what we need before we even know we need it. He is faithful to provide and I am thankful I don’t have to worry about the next step in this journey. It’s still hard emotionally but knowing there is a bigger picture, a greater purpose I simply can’t see brings a huge sense of relief. Travis and I could never walk this life  together and maintain our deep love and commitment for each other without our faith.

Isaiah 41:10 ~ Fear not, for I am with you. I am your God. I will strengthen you. I will help you. I will uphold you with my righteous right hand.

We spoke with the doctor for quite a while this morning and had to make some decisions on where to go from here. The fact of the matter is that Ryan’s bowels are not moving at all from his stomach all the way to his rectum, and there is no way to know if and when they will wake up. His bowel sounds are absent so we know nothing is moving. Unfortunately because he is not getting any substantial nutrition since we can’t feed him through his stomach, he will be getting a PICC line tomorrow under sedation and we will start TPN. That is nutrition through a long term IV site in his upper arm. He has also been having trouble with hives and seems to have hyper sensitive skin now so they are going to check lots of blood work in the morning. The other serious part that is critical is that only two of his seizure meds can be given IV which means he isn’t getting the coverage he needs. It’s a tough situation to be in given his neurological issues too.

I’ll be honest that this is a lot to take in right now and we are overwhelmed with the idea of going home with all this. I’ve done PICC lines for years at work but it’s completely different when it’s my own child. I can’t even think that far out right now and instead am just taking things one hour at a time. This is life changing for all of us if it’s something we will have to deal with long term. And no one knows why it happened. Either his bowels shut down from being under general anesthesia or he caught a virus that caused it. It is well known though that intractable epilepsy and bowel trouble are related unfortunately and even a small cold could cause all this trouble.

I am out of vacation and sick time so I’m not sure what I’m going to do about work. I’d love to just take another week or two off but our budget doesn’t allow it right now. We’ve got some things to figure out with that and how to get everything taken care of here.

Thank you for your continued support through all this. It means so much to not walk this journey alone.

Last night I was so frustrated!  The two GI residents that came in earlier in the day said different things too. One said Ryan has an ileus as we’ve been suspecting and that we’ll just see how things go, but there is a chance this could take months to heal and Ryan could possibly end up going home on IV nutrition.  Then the other came in and said he might just have some swelling in the intestines and maybe we should try to feed him today.  Then when the night nurse came in, she said she got in report that Ryan has enteritis (swelling of the intestines) but no ileus.  I was nearly in tears because no one seems to be able to agree on what the problem is.  I realize there isn’t a quick fix but for Pete’s sake, at least try to figure this out instead of just sitting around doing nothing but giving him IV fluids.  Those are important because he isn’t digesting so of course the fluids keep him from getting dehydrated.  And the IV seizure meds and Ativan are keeping him from going into withdrawal from the other seizure meds he isn’t getting through his g-tube.  The nurse was so sweet and talked to the charge nurse letting her know we feel like we are getting no where and the hospitalist happened to be up here at the time.  I talked to all three of them and they understand that we’ve been through three hospitalizations in two weeks with brain surgery too and that we are weary and need answers.  I’m not OK just sitting around doing nothing because it’s the weekend.  I told them I am an ER nurse and know things don’t shut down on the weekends so I expect them to do something if they think there are other tests we need to do.  In the end, the hospitalist said it looks like we are facing an ileus vs gastroparesis.  So basically they aren’t sure if it’s his stomach that isn’t emptying or if it’s his intestines that aren’t moving.  Either way, we are stuck with a digestive system that is not working.  Then one of the hospital residents came in this morning and said we might try feeding him at noon to see if anything is absorbing after two days of bowel rest.  It seems no one has any idea around here, but on a good note, the nurses are absolutely wonderful.  I don’t work in a teaching hospital so my patience dealing with all these residents and not just one doctor from each specialty drives me nuts because everyone says something different.  Those of you who know me understand that I am very much a person who wants to get to the point, figure it out, fix it and move on.  I don’t do well with wishy washy thinking.  Make a plan and do it. And of course after everything Ryan has been through these past couple of weeks – that we’ve all been through – I just want him healthy and home with the other kids.  It’s so hard to be away from the older three and they miss us terribly.  This is just awful for them emotionally and mentally.  Trevor is getting headaches and he isn’t recovering from his walking pneumonia as fast as he should and I know it’s stress.  The other two are stressed; it’s so obvious.  This isn’t fair for them to have to continually face all this medical stuff with their brother.  I would give both arms and legs to take the pain away from them. I know everyone keeps saying God is using this in their lives, they will be so much better off as compassionate adults because of the circumstances they face now.  Well ya, I believe that too, but it doesn’t relieve the tension and stress they feel today.  It simply breaks my heart.  I love all my kids so much and want them to just be kids.  So, we’ll see what today brings when all the doctors make it in.  I will update this afternoon when we know more but until then, we are going to enjoy our time with the older three kids when my dad and step mom bring them up around noon.  Thanks for your prayers, emails, texts, calls.  We love you all so much and your support is immeasurable!

Talked to the GI doctors finally and they said they doubt anything else is going on but the ileus. It’s a wait it out game at this point although they did start him on IV Nexium to help cut down on stomach acid production. He is comfortable and happy which is wonderful. So nothing new really except we know we have an issue that is not going to be resolved quickly. It’s frustrating but there is nothing we can do about it but wait. Worst case scenario would be Ryan’s gut doesn’t wake up and he has to go home with a PICC line and TPN which is IV nutrition. Just the thought makes me sick to my stomach! God is a big god and we know Ryan is in His very capable hands. Enjoy this beautiful day for us.

Ryan has IV fluids running and an abdominal xray was done. He is resting comfortably and Travis is with him tonight. We have a cozy room at the Rainbow House; I just showered and am going to get some sleep. Tomorrow the GI specialist will see Ryan and order more tests. The pediatrician is concerned he could have a malrotation of his intestines causing nothing to move. So we’ll see what the day brings. Feel free to stop up anytime and see us since we’ll probably be here a while. They put his g-tube to gravity to see what drains tonight. In regular terms, his feeding tube is hooked up to a urine leg bag so all the fluid coming back up into his stomach can drain out. I’ll update tomorrow when we know what will be done. Love to you all!

That’s right. We are at Children’s in Omaha room 502. Third hospital in twelve days. Ryan was doing good after his discharge yesterday in Lincoln and we were taking things slowly with his digestive system knowing it will take time to get him back to normal. This morning I took Trevor back to the doctor and he was put on another antibiotic and an inhaler because his pneumonia is still there. While I was gone, he started gagging, coughing and trying to throw up. Travis emptied his stomach and Ryan was very lethargic with his eyes twitching. We took him to the doctor and waited for Children’s transport to come pick him up and bring him to Omaha. He is obviously still having abdominal issues and we are settled just waiting to get tests ordered and figure out what they want to do. My sister, whose daughter is still on oxygen in the hospital, was so sweet to help us organize things. We have a room at the Rainbow House so one of us will get a good night’s sleep. I’ll update after we get some results but it might be a while. Thanks for your continued prayers. This is beyond frustrating but we are in great hands here and won’t leave until we know things are resolved. The older two kids are going to Dare to Share tonight and tomorrow with our church and Trevor has a birthday sleepover tomorrow night. My dad and stepmom are spending the weekend at our house to help us and my sister, and Travis’s parents are available too. Thank God for our family and church. They have all been so helpful and supportive, and we have been so blessed. A huge thank you to our pastor, Mark, for getting the kids’ bags to the right houses tonight! You are a blessing!

Since Ryan is holding down and digesting small amounts of fluids and a bit if food, we are going home today. We aren’t doing anything here in the hospital we can’t do at home. He has been off IV fluids since last night and appears more comfortable. Ryan still has a long way to go before he is back to his baseline but we are headed in the right direction. It will be good for him to be in his own bed and resting at home. He still has a lot of healing to do after his surgery and ileus and home really is the best place for that. Thank you again for all the encouragement these past three weeks. I’m ready for life to get back to a little more normal place and for all the drama to find someone else to pick on!

It’s been a good day!  Ryan had an enema this morning with good results then he ate some Cheerios and a little water later in the day without getting stomach cramps from it.  His IV infiltrated so that was taken out, and the doctor said not to start another IV and see if he can hold down more fluids.  We are giving Pedialyte 1 ounce every hour and if he tolerates that, we’ll increase the amount.  We are finally getting somewhere but don’t want to push things too fast and cause him to go back the wrong way.  I’d much rather spend an extra day in the hospital than push him too fast and end up back here in a few days.  He was in a great mood today and enjoyed playing in the playroom several times.  This evening Travis brought the older kids up then I left with them and we ate at Raising Cane’s thanks to our wonderful church family.  Can I just say we have only been at the church now for a couple of months and have not had the opportunity to really get involved yet because we knew Ryan’s surgery was coming up. We have been completely blown away by the support and generosity of our new church family.  There are no words to described how blessed and humbled we have been and we are so very grateful for everyone who has come around us and supported us – most of whom we do not even know yet.  We switched churches only because our older kids didn’t have a youth group at the small church we were attending and we switched for them.  I have to say we are amazed at the outpouring of love they have already shown us with meals, gifts, three pastors coming up to the hospital several times to get to know us and pray.  God obviously has us there for a reason and we are grateful for all the wonderful blessings. 

Here are some pictures of our day…

Travis giving Ryan a ride to his room from the playroom – this thing is way better than crutches

Travis saw the surgeon today and this is a xray from this morning.  You can see the huge screw and that his bone is still not healed. He can start full weight bearing as tolerated and by his visit next month, the bone should be completely healed.

My sweet niece, Reagan.  This isn’t the best picture but it’s my favorite of her because she gets so mesmerized by the TV. Pray for the sweet little thing as she is still needing oxygen support and they would sure love to get home soon.  She needs to turn a corner.

My cute boy who was very happy I gave him some Cheerios today!

And last, our side by side rooms which have been very convenient.  None of us enjoys being hospitalized but it is nice to be next to my sister if we have to be here.  None of the nurses can remember having a situation like this before.

My sweet friend Lori came to the hospital tonight and stayed with Ryan and sent Travis and me on a wonderful dinner date. It was great to get away for a few hours since we have had absolutely no time together alone since Travis broke his foot 2 1/2 weeks ago. Tomorrow I am going to spend the evening with the older kids since I’ve hardly seen them in the past 1 1/2 weeks.These past couple of weeks have been so hard on the older kids! It breaks my heart and is simply not fair. 

Ryan is doing OK I guess you could say. He has a small soft stool today which is progress but we tried to let him eat a small amount of Cheerios and water and it gave him terrible stomach cramps. It doesn’t look like we’ll be getting out of here any time soon. And my niece won’t either. She is still on oxygen and can not keep her O2 levels up when sleeping and walking. It’s hard to be hospitalized with a wiggly two year old! I’m glad we are next to each other to help each other out. And our kids go to the same elementary school so we can drive together as well. 

Please pray both these kids turn a corner soon. It would sure be nice to have healthy kids so we can sleep in our own beds and have our families back together. My older sister reminded me of one of my favorite passages today ~  Psalm 91:4

He will cover you with his feathers. He will shelter you with his wings.

His faithful promises are your armor and protection. 

Ryan had a rough time last night with what we think was gas in his belly. With being nonverbal it’s always hard to know. We gave him a Tylenol suppository which helped. He -and I – both slept well last night. Like at home, he sat up in bed for about 30-45 minutes nut then went back to sleep until 8 am. This morning the doctor ordered a Dulcolax suppository to see if we can get his bowels moving. It hasn’t worked yet so basically nothing has changed from yesterday. My niece has her oxygen turned off right now so hopefully she will continue to improve and not need oxygen when she is sleeping. She still has sternal retractions and is grunting when she breathes. It’s baby steps!

Travis is picking up pizza for everyone tonight then we are going out to dinner. My sweet friend, Lori, is coming up to wTch Ryan and is sending us to Olive Garden. We haven’t had any time to sit and talk for at least 2 1/2 weeks since he broke his foot. It’s not like we haven’t had a lot going on so this will be a huge blessing.

I’ll update again this evening. Happy Valentines Day!

Sorry it took me so long to get this updated today.  I wrote a post earlier and it must not have taken so I’ll do it again.  Ryan’s head CT from earlier today was negative so there is nothing going on there we need to worry about.  He has some expected post op changes but the radiologist and pediatrician were not concerned.  He had a decent day and slept until early afternoon then took a good nap later.  There has not been any fluid to drain from his stomach which means his intestines were not backing up.  Until tonight that is.  I just got about 2 Tbsp of residual fluid out and he is hurting.  I brought the kids home from the hospital and he was really crying and feeling crummy when I left.  The nurse and I both think he has gas pains in his abdomen which is common with an ileus but it’s hard to watch him hurting and not being able to take the pain away immediately.  There isn’t a whole lot we can do for him either except try some Tylenol and a suppository to see if we can get the gas out of his system.  Please pray he will have a peaceful, rested night.  I need the sleep desperately too only getting just under three hours of sleep since Sunday morning.  Hopefully tomorrow will be better.

Several have asked about Travis and he is doing fairly well. He’s still hobbling around but has started to put some weight on his right foot.  It’s been about twelve days since the screw was put in his foot and he doesn’t ever complain.  He sees the doctor again on Wednesday and is back to work in the office this week. 

Thank you for your continued prayers for healing.  Much love to you all. 

Last night around 10:30 we took Ryan to the ER again and just as expected, his ileus is worse. We started IV fluids and did another abdominal X-ray that showed more air in his intestines. He was also very shaky  because he wasn’t getting his seizure meds like he needed. It was a hard decision to make whether to stay in Lincoln or go to Omaha again since he is established there. Our pediatrician has said in the past he thinks Ryan should be in Omaha due to his complex issues, but for our own sanity and mental health we decided to stay here. Both Travis and I are very stressed and having a difficult time with all this. We are both weary and just need a break from it. That isn’t going to happen this week but somehow we are finding the strength to keep plugging along. 

The doctor was here – can I just say what a wonderful pediatrician we have! – and we are going to do a CT of his head again to make sure this isn’t all from increased cranial pressure. If that is clear, we’ll try getting him up and walking around today, maybe trying to eat a little to see how he does. The doctor has no idea why he has an ileus when his abdomen is soft, non distended and not painful when palpated. So we’ll see. I’ll update again when we have CT results. 

My 2 yr old niece, Reagan, was also admitted yesterday just four doors down from Ryan with pneumonia. She is on oxygen and has sternal retractions so please pray for her as well. How many people can say they know cousins and sisters admitted to the same floor on the same day! Crazy but we both would rather be at home. It’s nice to have each other here though. And it’s nice to be less than ten minutes from home for once! 

Visitors are welcome! We are at BryanLGH East C216.

Ryan and I spent several hours in the ER and are now home; he is getting some much needed sleep.  They did an abdominal xray and started an IV while we were there.  The xray showed a lot of stool in his lower intestines and the radiologist report said he has a mild ileus.  After two boluses of IV fluid, I felt comfortable taking him home.  Ryan has always had bouts of constipation; we can easily take care of things at that end here at home and already have for the most part.  It’s the ileus we can’t do anything about.  Thankfully I know how to manage fluids through his feeding tube so I can monitor how much he is digesting every hour including residual and give him very small amounts frequntly until things start to move again in his small intestine.  We will definitely follow up with our pediatrician in the morning and stay on top of things.  I’m hoping that allowing his bowels to rest today without getting any food or fluids then starting very slowly tomorrow will do the trick.  Thank God for the IV fluids that will keep him from getting dehydrated for the present time.  This isn’t exactly how we wanted to spend our first few days at home, but at least we have the resources to manage here for now.  Please pray with us that his bowels wake up quickly so we can move forward and focus on his brain healing.  Besides this bump in the road, he is doing remarkebly well with his healing.  His incisions look great and he is in very good spirits without giving us any indication that he is in pain.  Unfortunately the seizures are still crazy, but the huge ones that generalize to the other side of the brain are gone.  It’s still so very hard to wrap my brain around the fact he is going to continue to have so many seizures but I am certain with time we will all come to accept things as they are.  Like Travis and I have said a million times, we can now say we’ve done everything for him that is reasonably worth trying.  He’s a sweet boy and is very loved.  Hopefully these next few days will continue to bring more healing on his little body.  Much love to you all!

Well, I am in the ER with Ryan this morning. He still had fluid in his stomach this morning and I knew by looking at it he probably had an ileus. I brought him to the ER I work in since these people are my second family. We did an abdominal xray and he is getting rehydrated with his IV. He has a lot of stool in his lower intestines but I decided to do an enema at home later so it’s less traumatic for him. The radiologist also read his xray and said he does indeed have a mild ileus just
as I expected. I’m hoping we can go home since he is getting rehydrated. I know how to give small amts of Pedialyte in his tube and measure for residuals so I know how much he is absorbing. We can always reassess in the morning and I can take him to the pediatrician if needed. Please continue to pray for complete restoration of his abdomen so we can stay home as a family. I will keep you updated. Hopefully we’ll be heading home in an hour or so.

We got home yesterday around noon, and Ryan was doing well until just a bit ago when he threw up his Tylenol and formula.  He was throwing up in the hospital on Tuesday and Wednesday (he was fine Thurs and Fri) and I told the doctor and nurses then I was concerned he may have another ileus which is a small bowel obstruction where the intestines basically stop moving. This can be a side effect, although not common, after being under general anesthesia.  The only treatment is bowel rest until it decides to “wake up”. He had an ileus in November after getting the stomach flu and becoming very dehydrated.  I’m sure some of you remember he was hospitalized at Children’s Hospital for three days at that time.  It is very concerning that he could have another ileus because he threw up immediately after we fed him today which is exactly what he was doing in November.  Needless to say, it is very concerning as the last thing we want is to go back to Omaha for another hospitalization.  We would greatly appreciate your prayers right now. 

It’s been a tough transition coming home and to be very honest, Travis and I are already struggling.  Ryan continues to have many seizures which is very hard to watch.  We have not seen any of the big drop seizures which is exactly what the surgery was supposed to eliminate but the small, simple partial seizures that we knew would not go away are abundant like usual.  We have known these seizures will never go away but it has been harder than either of us imagined to see his seizures knowing there is now nothing we can do to help him.  Unless medical science comes up with something new, we are done.  It’s been very tough mentally and emotionally.  And now we are very worried about another ileus.  Please pray with us that his bowels will work correctly so we don’t have to be hospitalized; it would basically be for IV fluids.  I don’t know that any of us in the family are up for that again, and so soon.  I promise to keep you all upated.

Just a quick update to let you all know we are home, and Ryan is sleeping on the couch.  We will follow up with the surgeon on the 28th.  I’ll do a longer post either tonight or tomorrow but for now I have a whole bunch of stuff to do to get caught up. 

He is still doing amazingly well and now needs a lot of time to rest.  This next week will hopefully be quiet and give him lots of time to simply let his body heal.  Our sweet little boy has been through more in the past 14 months than many people will go through in their entire lives.  He is living proof that God is good all the time even when we don’t understand.  It’s a joy to be home and we are relishing God’s provision this week.  Thank you, once again, for the numerous messages of prayer, support and thoughts.  I just simply don’t have the word to say what my heart feels.  We are blessed and humbled.

Today is go home day! Ryan had a fabulous day yesterday, completely turning a corner from Wednesday. He was up walking, played in the playroom twice and was very engaged. Today is the same with lots of smiles and playing with toys. I know when we get home he will be completely exhausted and sleep a lot which is what he needs. It will sure be nice to sleep in our own beds tonight and see the other kids! I’ll update later this evening. Love to you all!

We are on day four and today is starting off much better than yesterday. He ate an entire serving of eggs and half a glass of water and is now sleeping again.  He’s also held down all his meds; so far so good! Ryan is more awake this morning and has given us a few smiles too. Yesterday was rough because he threw up several times until noon and had a couple bouts of extremely loose stools. Hopefully this little bit of new energy will last and he will be able to hold down his food today. If so we will probably be able to go home tomorrow where Ryan will be much more comfortable.

Ryan is doing OK this morning. He did throw up again so we are giving his meds again very slowly; he hasn’t been able to tolerate more than one ounce of fluid at a time. The resident will be coming in soon to take out the JP drain and put a disposable stitch in his head. He’s also had two bouts of diarrhea today probably from the strong antibiotics he is on. He is still pretty out of it and it appears he may be like this for a while. The surgeon thought he might bounce back a little faster but said with this surgery it can take several weeks before he starts to turn around. So basically we have no idea what to expect for recovery time.

The kids were here last night with Travis’s parents, and it was great to see them. Trevor had a mild cough when we left Monday morning but sounded a lot worse last night. When he got home Sidney took his temp and it was 100.5 so I had my sister take him to the doctor this morning. He is now on antibiotics for walking pneumonia and is home resting today and tomorrow. I hate not being there to take care of him!

It looks like we will be here for a couple more days at least but he needs to be here obviously. Thanks for your continued prayers.

Happy in registration and preop not having a clue what is coming

Yesterday post op and today in his regular peds bed.  He’s doing well but is fighting a fever which is normal. 

He’s very, very out of it but stable and doing as well as can be expected.

Ryan slept on and off through the night. He does not appear to be in much pain thankfully but is very dazed and out of it. The surgeon said he may be stunned for a day or two so we kind of expected this. Last night he threw up his meds but he always has problems with that after surgery. His vitals are stable but this morning he Has a fever so he just got some Tylenol. It sounds like he may be moving to a regular peds bed today which means less monitors and lines to deal with. As much as we love the nurses in the PICU, it’s always nice not to have so many interruptions when we are trying to sleep, especially for Ryan. He is still pretty shaky and I’ve seen several seizures this morning but nothing big and continuous. I’m hoping he sleeps all day; his body certainly needs the rest.

Ryan is doing as good as can be expected. He is settled in his bed in the PICU and is stable. Although very out of it, he is awake at times and knows we are here with him. The doctor said the corpus callosum is supposed to be paper thin and cut easily with a knife. Ryan’s, however, was thick and rubbery and the doctor has to use scissors to cut through it because it was so damaged from seizures. When he had his lobectomy 14 months ago, he said the same thing about his right frontal lobe. Obviously there has been a lot of damage throughout his little brain, and while this surgery won’t get rid of his seizures, hopefully it will do what we are hoping for and reduce the severity and number he experiences. What a little trooper we have! This has been a very emotional day for us and it’s so hard to watch our baby go through this. At times I feel guilty for putting him through all of it, but long term we know it was the right decision. Like we’ve both said a hundred times, it’s all about quality of life at this point. Please pray he sleeps tonight and is comfortable. Tomorrow when I am rested I’ll work on getting some pictures loaded. Thank you for all the sweet messages throughout the day; they mean more than anyone realizes.

Just got another update. They are done and closing him up now which will take an hour. Travis and I will see him in post op and when he is stable we’ll move to the PICU. I’ll keep taking pics and download them later when the Internet is more cooperative.

Surgery started at 12:45 so we’ve got a way to go but the liaison said all is going well so far. Here are some cute pics from this morning.

Well I tried to download pics but it will have to wait cause the internet isn’t cooperating.

We got a call this morning that there was a cancellation so we came up earlier than expected. My dad and Donna got our stuff settled while we went to pre op. Ryan is now in surgery but they are doing all the pre op stuff now – starting two IVs, drawing blood, starting an ART line, putting in a catheter. They are hoping to start surgery around 12:30 and should be done in 3 or 4 hrs before he will go to post op. The surgeon said Ryan will probably act stunned and very tired for a day or two. He will be in the ICU for a day or two then on the regular peds floor for a day or two. Thanks for your continued prayers. I’ll update in a couple hours.

Yesterday we got a foot of snow – at least – and somehow my older sister was still able to fly in to Omaha and drive down to Lincoln. It’s nice to have her here.  Last night both of my sisters and I went out to eat then spent the evening buying junk food for our football party tonight then played lots of Nerts.  It’s nice to have my dad and his wife here now too although I’m not in much of a social mood tonight. 

Travis is having a rough weekend unfortunately.  His pain isn’t bad, but he is struggling with a possible virus.  He keeps getting hot and cold, light-headed and has periods of sweating.  Please pray he isn’t getting sick. It’s very hard to tell if it’s an actual physical illness or if he is simply stressed.  I personally think his body is worn down from surgery on Thursday and the stress of Ryan’s surgery tomorrow on top of not being able to help out around the house all week as I’ve been running around like a crazy woman trying to get things done and organized is really hard on him.  Please pray for his health.  He needs to be healthy and feel good; I need him with me at the hospital.  And he needs to be there for Ryan too.

There is so much stress at our house.  The kids feel it too and are very scared.  Lord knows they’ve been through this before; we all have.  But it’s never easy and no matter what anyone says or does, the pain of putting Ryan through this just simply doesn’t go away.  I know the older kids will all be OK but I worry about them. 

The plan for tomorrow is to get the kids off to school then Travis, Ryan, my dad, his wife and I are heading up to Omaha together.   I simply can’t get both Travis and Ryan plus all our bags up there by myself.  We will head to pre op at 11:30 then surgery is supposed to start at 1:00 so hopefully we’ll be able to get in on time.  I am going to wake up at 3 am to give Ryan one more tube feeding and his seizure meds since he has to go so long during the day with nothing to eat or drink. 

I’ll update again once things get rolling and Ryan heads back.  His surgery is supposed to last about 4 hrs and I promise to keep you updated.  Please pray for the surgeon and his team and also for Travis.  He needs healing.  I know God is going before us preparing the way, but that doesn’t make this journey easy.  It simply gives me peace. 

Thank you for your continued love and prayers.

Thumbs up!  A little drugged but doing well post op.

Travis is doing alright this evening.  We got to the surgical center at 8 am and he headed back to surgery just after 9:30.  They didn’t put him under general anesthesia which was nice because he had a much shorter recovery period.  He has a nerve block to his lower right leg which hasn’t worn off yet thankfully. The doctor put him on some very strong pain meds so we’ll see how he’s doing in the morning.  Hopefully he will get some sleep tonight.  He has a walking boot and can start partial weight-bearing in a few days.  I saw the post op x-ray and the screw in his metatarsal is almost two inches long so the break should be very stable.  We got home before noon and Travis has been resting on the couch; he’s in good spirits.

I took Ryan for his pre op appointment after school which he did not enjoy at all.  Our routine is to go home after school so he was less than pleased when I dropped Trevor off  in the driveway then didn’t get him out too (big mistake on my part!).  He threw a complete fit in the doctor’s office but at least we got his blood drawn, and he is happy now. 

Ryan’s surgery is still scheduled for 1:00 Monday, and we have to be there at 11:30.  It might be a very interesting day with him not being able to eat or drink but hopefully he’ll do better than I am anticipating.  We reserved a room/apartment at the transplant center which ends up being a huge blessing since Travis can’t drive right now.  It will give us a place to go shower and just get away for some peace and quiet when we need it.  We’ll probably take turns at night staying with Ryan which is what we usually do and it works well so one of us gets a good night sleep. 

We have a busy weekend ahead.  Friday night we were all suppose to go to a hockey game which was a Christmas present but Sidney has to be in Omaha at 8 am Saturday for a volleyball tournament so she needs a good night sleep, and now with Travis having surgery he can’t go.  Instead Lindsey (respite) is going to take the boys and two friends.  Saturday Sidney and I will go to Omaha for the day then my older sister flies in from Philly in the afternoon.  We are praying the snow is done by then so she doesn’t have any problems getting to Omaha.  Saturday evening my sisters and I will go out then Sunday my dad and his wife will come down and we’ll all watch the game together.  It will be a busy weekend, especially trying to keep Travis comfortable.  He doesn’t do well sitting around and I’ve already yelled at him this afternoon for cleaning the bathroom. 

I’ll update again Monday when we get to the hospital.  Thanks for your continued prayers.  We have been very blessed with your cards, calls, emails, messages, food, etc.  This journey has been so much more tolerable with wonderful people walking the road with us.  Much love to you all!

I feel like an emotional mess this morning.  I’ve been working all night – third 12 hr overnight shift in a row – and have had way too  much time to think.  The closer I get to going home this morning to get Ryan ready for school then get Travis out the door, the more reality hits me.  This surgery on Travis’s foot wouldn’t be a big deal at all if Ryan wasn’t following him to the OR only four days from today.  I’m simply not ready, and I don’t want to put him through all this but I know it’s to improve his quality of life.  And Travis will be in pain which bothers me.  We have help – family, friends, meals, lot of people thinking and praying – but I still have the pressure as the mom and only functioning parent to organize everything.  I have been pretty good until this morning but I know we’ll get through it just like we get through everything else.  It just feels like we have a lot on our plates in a very short time.

It doesn’t help that Sidney had a “friend” say something very rude yesterday at school.  The girl was making fun of one of Sidney’s best friends so Sidney did the right thing and stood up for her friend.  This girl making the rude comments has been to our house numerous times and was a friend of Sidney’s up until this point.  She called Sidney some very mean names then said “If I could, I’d punch you in the head so you’d end up just like Ryan”.  Talk about a dagger to the heart.  I am still completely angry that she has such a mean-spirited heart to say something like that to Sidney who was supposedly a good friend.  Poor Sidney was absolutely devastated.  I just kept telling her she did the right thing by walking away and that no one who is that mean deserves to be her friend.  Junior high is such a hard age.  And to add the stress of her dad going to surgery today then her little brother in four days just makes it all worse.  I hate knowing I will be in Omaha all week in case something is said again.  This girl knows Ryan is going to surgery and I’m concerned she will continue to bully Sidney when all Sidney needs right now is friends to surround her and support her.  Please pray for this girl; she obviously needs it.  And pray for Sidney that she would stay strong and be surrounded by positive girls.  It’s hard to watch your kids go through these tough times but even worse when there is already so much stress at home.

Travis’s surgery was moved up today so we have to be at the hospital at 8 am now.  I will update when he gets out so you all know he is doing fine.  Once I get him home and settled, I have to take Ryan for his pre op appointment at 3:30 to have blood drawn and his assessment faxed to the hospital.  

We appreciate your prayers.

I’m getting tired of talking about surgery all the time!  But it’s what consumes our lives right now unfortunately.  Travis has to be at Lincoln Surgical on Thursday at 8:45 so hopefully we’ll be back home by early afternoon.  This is not a lengthy, difficult procedure and the pre and post op are going to take the most time.  Then in the afternoon I have to take Ryan for his pre op appt to have labs drawn and all that paperwork.  Saturday I will be in Omaha all day for Sidney’s volleyball tournament then my sister is flying in from Philly so hopefully the rest of the weekend will be filled with fun with my family.  Monday Ryan’s surgery is still scheduled for 1:00 but I am waiting to hear if they were able to move it to7:30 like they hoped.  

I can’t say thank you enough to those who are helping us out.  Lisa – for your generous heart taking the older two kids back and forth to school every day.  Our church – First Free – for the meals coming on Wed, Thurs and Fri.  Amanda  – for the two meals you gave us a couple of weeks ago.  We’re eating the lasagna tonight.  I love your sweet, giving spirit.  Travis’s mom – thank you for cutting into your work day to take Trevor and Ryan to school this week.  You allow me to get more than five hours of sleep between shifts with your selflessness.  Brady, CeCe, Tim and Candace – for the boxes.  You warmed our hearts.  Thank you. My dad and Donna – for being so willing to drop everything and come.  I’m looking forward to having you at my side this weekend and for Ryan’s surgery Monday.  My sisters – I love you both so much and couldn’t walk this journey without your patience and love.  Shell – for always being there when I need to blab.  There are so many who have asked what they can do to help out.  I am overwhelmed with your generosity and concern.  I will keep you all updated and appreciate prayers for both Travis and Ryan during surgery and recovery.  And please keep our sweet kids in your prayers because they are very concerned and stressed. 

I can’t wait to be down the road a bit so we can be on the other side of this doing the giving and not the receiving.  Love you all!

Sorry this will be short but I’ve been awake for over 25 hrs and am very tired.  Travis saw the surgeon yesterday and will be on the schedule for surgery on Thursday.  We don’t know what time yet because our appt was so late yesterday they couldn’t get it set up with the surgery center we are going to.  The good news is the doctor said he can start weight bearing next week and will only be on crutches for a few weeks but will need physical therapy eventually.  It has been and continues to be a very stressful week but we are managing.  Thanks for all your thoughts and prayers.  Love to you all!

What a day.  We decided today would be a family day so after church I made broccoli chicken alfredo then we all went outside to play basketball together.  Unfortunately Travis jumped up then landed with his foot half on the cement, half off and rolled his ankle.  When I saw the swelling on the outer portion of his foot I knew something was probably broken.  Below is the xray of his right foot which shows a broken fifth metatarsal.  You can see the Y shaped break in the middle of the picture on the right side.  He also has a very swollen sprained ankle.  So our family day ended up with a trip to the ER and a cast on his right leg.  He is non weight bearing, will probably need surgery and can not drive.  The timing is very frustrating with Ryan going to surgery next Monday.  I guess this week will now include a trip to the ortho doctor and possibly scheduling surgery for Travis too.  I don’t know how this is all going to play out but we are both trying very hard to trust God’s timing.  The truth of the matter is that with Travis having started his job just a few short months ago, he doesn’t even have enough time yet to take a week off  just be in the hospital with Ryan.  He will have to work from our ICU room.  So if he has to go to surgery himself, I’m not sure how this will all play out.  I’m already taking my only week of time left for Ryan’s surgery so I don’t have anything left if I need to take off for Travis too.  It’s easy to allow worry to take over my mind and I’m trying very hard to trust God for His perfect provision.  And our sweet kids are so upset and worried.  They already have so much stress trying to deal with their brother going back to surgery again; they are scared.  And now they are worried about their dad and see how upset Travis and I are.  It’s hard to know how to help them and it seems so unfair with everything they have to go through.  I wish I could protect them and take it all away.  My heart aches for those sweet kids.  They are growing up faster than they should have to.  Much too fast.  I simply ask you all to please pray for us.  We have a lot going on right now and this is simply one more thing.  I feel very weary and am trying so hard to keep my mind positive and focused on God’s word.  It’s hard though.  And then as I was leaving to get Travis’s pain medication tonight, our car wouldn’t start on top of everything else.  It started for Travis later but there is definitely something wrong with it.  As they say, when it rains it pours. But as Sidney reminded me tonight, God doesn’t give us more than we  can handle.  I’m beginning to wonder just how strong God thinks we are.

It’s been a rough couple of days for a lot of people around here.  One of the most genuine, sweetest guys I know was killed in a one car accident on Wednesday evening while driving to work.  Travis was a police officer with him at LPD for several years, and I know him from his off duty job in the ER and all the times he would come in while on duty with LPD for investigations.  Tony was one of those people who didn’t know an enemy, was always positive, genuine, helpful and fun to be around.  He was so highly respected by everyone who knew him and volunteered for numerous organizations; he left behind  a wife and three young boys.  We will be attending his funeral on Monday with so many others, and it will be a tough one. 

With Ryan’s surgery only nine days away and weighing heavily on our minds, Tony’s death has been a very vivid reminder that each day is a gift.  I would be lying if I said my mind never wanders to the “what if’s” with this last surgery.  We’ve been so blessed to avoid any major complications with the other four surgeries in the past fourteen months.  But I also know I can’t allow my mind to go down that path.  The truth is evident in Tony’s sudden and unexpected death – we aren’t promised tomorrow.  I know God has a perfect plan for all of us and it’s not our job to think about how much time we are going to be given here on this earth but instead to make the most of the time we do have.  I can only hope that with everything we’ve been through, our lives and testimony will be a rich legacy much like the one Tony is leaving behind. 

Psalm 91 ~

Whoever dwells in the shelter of the Most High
   will rest in the shadow of the Almighty.
They say of the LORD, “He is my refuge and my fortress,
   my God, in whom I trust.

He will cover you with his feathers,
   and under his wings you will find refuge;
   his faithfulness will be your shield and rampart.

Tonight we did the team effort thing and cut Ryan’s hair.  It was getting really long and needed a trim but with surgery in less than two weeks, I knew we needed to cut it short since they will be shaving a huge strip of his hair.  Travis wasn’t home which is really a good thing because he hates to hold Ryan down, and it took three of us to get it done but he looks like a different kid.  I have to admit I wasn’t prepared for how visible his scars are with his hair buzzed.  It brought a flood of emotions in and I kept saying “his scars are so noticeable. Your dad really isn’t going to like this”.  Sidney replied several times “It’s OK, mom. It doesn’t matter”. 

Not the best lighting but you can see the gaps where he doesn’t have any hair growth due to the extensive scarring on his head.

Otherwise things are OK here. This past weekend my dad came down and we had a great time celebrating birthdays with my sister’s family too.  Tomorrow we are celebrating one last time before I turn the big 4-0 next year but at least no one ever thinks I’m as old as I am.  Travis is working from home tomorrow so we’ll go out to lunch then do something for dinner as a family but otherwise it’s just another day with dishes and laundry, but of course that stuff doesn’t ever end no matter what day it is.  We don’t have any games this weekend but next week gets busy as we prepare for Ryan’s surgery on the 6th.  It always takes me several days to get everything in order – laundry, cleaning the house, organizing rides and appts, pre op appts, phone calls.  I’ve already done most of the prep work to be gone but there is always stuff that comes up or can’t be done too far ahead of schedule.  I feel like we’ve done this hospital thing enough times I should have it down by now but there is always the flood of emotions that comes up again and again.  I so wish for one day with no seizures, but that’s not going to happen.  We are beyond hoping for a cure and now simply pray he can do simple things some day like drink out of a straw or say more than just no and go without being cued.  I am going to have to work weekends for a while after surgery until Ryan can get back to school so that is going to be rough but I simply don’t have the time built up to take an extended leave without feeling it financially.  And that’s fine; it simply makes things hard with the kids’ activities.  In the end what matters is that we are blessed to have flexible schedules and understanding kids.  We have another McClintick dinner this coming weekend then my sister comes from Philly the following weekend and will be here for while Ryan is hospitalized.  I am really looking forward to some girl time with my two sisters and a big Super Bowl party the night before surgery.  We are so blessed to have a very close knit family and I don’t know what we would do without them all. 

This evening I was sitting on the couch looking at the extensive scars on Ryan’s head.  Before I cut over two inches of his hair off tonight, you would never have known those scars are even present.  But once his hair was cut away, the scars can’t be hidden anymore.  And now everyone he sees is going to realize he has an extensive medical background because his past is so noticeably present right there on his head; of course it’s always obvious he is disabled.  I realized how many scars we all carry from past hurts, disappointments, situations that seem hopeless and all the broken dreams that no one even knows are there.  And I wonder how our lives would change if they were exposed for others to see.  How others would respond to us.  How many lives we would impact if those scars were out in the open.   Those scars on Ryan’s head are proof of how tough he is, how much he has endured over the years yet he is still full of laughter, smiles, nosey kisses and baby step progress.  They show the faithfulness of God in his life.  And our scars can do the same for us if we allow them to.

The kids are all busy with homework, sports, youth group, friends.  Nothing out of the norm really for us.  We’ve had some great family moments talking, sharing our hearts, praying together.  As much as I loved having little ones at my feet, I’m really enjoying them as they grow.  It’s nice to sit down and chat with the kids and see into their hearts.  They really are growing up so fast and are not little kids anymore.  We have been blessed with three wonderful kids who have the biggest hearts and are just simply very sweet, caring people.  Love them dearly!

Ryan is the same – sweet, smiley, happy, loud.  He is very loved and certainly doesn’t lack for attention at school or home.  His seizures are just as bad as ever and make him very tired but otherwise he is healthy and doing well.  Surgery is two weeks from Monday and coming up fast.  We finally have everything in order. My sister from the East Coast is coming for five days and will be here for his surgery.  She was with me through four hospitalization in Minneapolis several years ago; it will be nice to have both my sisters around this time. 

Travis and I are doing OK.  Our emotions go up and down constantly but we are sticking together and lean on each other a lot for support.  He’s a great guy and I’m thankful to walk this road with him.  His job is going well and we are both loving the flexibility he has to work from the office or home.  I just worked five 12 hr shifts in a row so I have a lot of catching up to do today around the house.  It usually takes me a couple of days to feel normal again switching my sleep schedule from days back to nights but that just comes with the job.  I like what I do which helps. 

Much love to you all!

My sister, Carrie, sent me the book Fearless by Max Lucado which I highly recommend.  My journal is full of notes from the book and I’m not even close to finished with it yet.  While I was skimming through it the other day, my eye caught a quote that I want to share.  With Ryan’s next surgery scheduled in just three short weeks, I have been busy making phone calls to get everything set up, moved around, rescheduled, organized.  I’ve been quite consumed with it all but there has been so much to do I really haven’t had a choice.  Then yesterday in the mail we got a familiar envelope from the neurosurgeon with a bottle of chlorhexidine in it which is the soap we have to use the night before surgery to wash Ryan’s hair.  And it all became so very real. This quote is from Admiral James Stockdale who was a Vietnam POW for 8 years.

I never lost faith in the end of the story, I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which in retrospect, I would not trade.

Max Lucado goes on to say that real courage embraces the twin realities of current difficulty and ultimate triumph.  Yes, life stinks.  But it won’t forever…….Everything will work out in the end.  If it’s not working out, it’s not the end.

I know this next part of our journey is simply just that – only one part.  There are so many other chapters of our book, lots of places to go, memories to make, laughter to share, people to meet.  And I am confident that even when we face these difficult moments when I simply am unable to stop the tears from falling because my heart hurts so very much knowing how difficult things are going to be in three weeks, it’s not the end of the story.  God has seen us through so much, He certainly will be with us in the coming weeks. 

I couldn’t agree more with what Sheila Walsh said in her book Beautiful Things Happen When a Woman Trusts God ~  All I have to offer anyone else is a life surrendered to Christ so that His beauty and grace shine through my brokenness.

~ Ryan in his cute new pjs from Uncle B & Aunt CeCe ~

On Tuesday, Sidney and I took Ryan to Omaha for an appt with the neurosurgeon. I was glad to have Sidney with me because while the doctor and I talked, she pushed him around in his wheelchair. Let me just say, in this situation, a 15 minute nap is much worse than no nap at all. Sidney was a huge help because Dr P and I talked for quite a while. We both agreed that if this is going to be Ryan’s last surgery, we might as well be aggressive and do everything we can to calm seizures because we are not doing this again. Last shot, last chance, last call.  Well today the surgery scheduler called and said we are only doing one surgery, and it will be Monday, February 6 at UNMC. The total hospital stay should be 3-4 days in the ICU.

So what exactly are we doing….I think you all know, or sort of understand, what we did in November 2010. Ryan’s seizures have continued to get worse over the course of his short little 8 years and after everything else being a failure, we finally went in and removed almost all of his right frontal lobe during a ten-day ICU stay. They also put 88 electrodes directly on his brain to monitor seizures which is the most the surgeon had ever put on a patient. From that monitoring we know he has several hot spots in his left frontal lobe that started acting up after the right frontal lobe was removed. He also now has three craniotomies (big pieces of skull that were removed and then put back with plates and screws) and a very big scar from ear to ear.  On February 6, the doctor is going to go through the same incision and craniotomies to cut the front 2/3 of his corpus callosum which is the bundle of nerve fibers that allow both hemispheres of the brain to talk to each other – and allows the seizures to spread.  There was talk of a second surgery two days later – putting electrodes back on his left frontal lobe while the surgeon already has him exposed to monitor where the seizures are exactly (in the first surgery) and then possibly cutting some of the nerve fibers in those hot spots to try to decrease that seizures activity as well.  The surgeon must have talked to the neurologist who probably didn’t like that idea or thought it wouldn’t help because as of now they have decided to simply stick with the corpus callosotomy. This will hopefully decrease the size of the seizures he is having – and the amount too. Right now he has anywhere from 20 to 200 seizures every day, and while some of them are small, some are so big they cause him to thrash around and fall to the floor. Because there is no hope Ryan will ever be cured of the seizures, we are simply trying one last thing to reduce the size and number of seizures so his quality of life (and ours) will be better.

As of February 6th when this is all said and done and sweet little Ryan is sleeping in the ICU, we will be able to say we have tried everything possible. It’s a very daunting feeling to know this is the end unless the medical field finds something else that could possibly give us any hope of stopping seizures. This will be his fourth brain surgery (and fifth surgery) in 15 months. Drugs, diets, herbal/nutritional supplements, two lobectomies and the device implanted in his chest have all failed.  But we’ve both always said we will try everything we can to give Ryan the best quality of life possible and this next surgery is the one last trick we have up our sleeves in that quest.

I can’t really begin to describe the sense of grief I feel. This has been a very long road and while there have been so many blessings along the way that Travis and I both recognize, it’s been a journey marred with many tears of frustration and sadness. I don’t know that I can adequately put into words what my heart feels right now. There aren’t really words to describe the profound emotions I am feeling. It was not easy to have a very gifted, highly respected surgeon look me in the eye and say “you have been through more with your child than most people will ever experience”.

Several people have already asked what they can do to help us. You know me, I have a very difficult time accepting help from others but over the years have also been very humbled by the generosity we have received. It’s not easy to say we can’t do it all and be completely independent in handling these situations, but I’m slowly learning I can’t be an island and continue to push others away which is something I’ve become very good at these last few years. I’m trying very hard to take care of myself so I can be healthy emotionally, mentally, spiritually and physically. The road is long to get where I want and need to be but I’m getting started finally. So to admit we will need help in four weeks is hard, but I’m going to do it anyway. If you want to help and are wondering what you can do for us, I think the biggest thing is simply pray…for the stress Travis and I are both feeling not only for this surgery but also for a variety of other things we are facing right now, for the older kids who understand way too much and feel the effects every day of having a medically unstable brother, for Ryan to not be in pain post op and for infection and other complications to stay away. Gift cards or meals for the older kids are always nice to ease the load for Travis’s mom who will probably be here with them. Gift cards for gas, fast food that is close to UNMC, books, magazines, candy, snacks are nice too. Or meals when we get home with Ryan. I have one week of vacation time I can take off – was hoping for two but I had to use a week when Ryan was hospitalized in November. Travis has plenty of vacation and will probably just take a week off, and I will change my schedule around to work weekends for a while so one of us is home with him during his recovery before he can go back to school.  If you want our address or phone numbers, please email us and we’ll respond – mcclintick6@hotmail.com

I haven’t done a good job of thanking each of you personally for your support. There are several of you who come to mind who have really tried to walk this road with me and I have pushed you away not allowing very many people to get close to me in the last couple of years. I’ve really trained my mind to falsely think I can handle it all, be completely independent and don’t need help from anyone when in reality all I’ve done is isolate myself.  I hate to say it, but it’s true and I can finally see it and admit it.  I certainly don’t deserve the love you have all shown us, but please know I am thankful.  I hope in the months and years to come I am able to bless others in the same way we have been blessed.  This journey may be hard but you all have been much of the beauty we’ve enjoyed along the way.

Well, we all did it.  We made it to 2012.  Happy New Year everyone!  I suppose I’m doing the same as most of you are or have done in the past couple days or weeks….thought about the new year and what that means to you.  To some people it’s simply another day with a different number to put at the end of the year when you write the date.  To others it’s a time to be introspective, take a deep look at the past year, decifer what went well, what didn’t, what is going to change in the months to come, what works and what doesn’t.  Some people are hoping for a fresh, new start while others want to hold on to the blessings and prosperity they have been given.  I can’t decide where I stand on the issue to be honest.  I can say 2011, for me, has been a real mixed bag of emotions ranging from rejoicing to sadness to regret to thankfulness.  And I’m not sure what to think about 2012.  I know it’s not starting off with a bang but I’m hopeful good things are to come.  Of course all I think about right now is that the kids have one more week to sleep in, stay up late and hang out with their friends at all hours of the day which is good; they’ve had a great ten days off so far and don’t go back until Monday the 9th.  And Tuesday we go to Omaha to see the surgeon again before his next brain surgery is scheduled and find out exactly what to expect. But it has to be done…Ryan’s quality of life, that’s what we are focusing on.  And this is the end of the road as far as interventions we have to stop his seizures.  One last surgery then we are done and the future is in God’s hands.  The future has always been in His hands, but this is the last thing we can do.

A new year and a new perspective.  That’s what I want.  And I pray each of you reading this blog has a very blessed,  joyful year ahead.  No matter what the next 365 days bring, I pray you all have a positive perspective on the situations you face. Learn to find joy even when happiness escapes you and your circumstances are not as you hoped they would be. Celebrate family and friends. Focus on all the good things you encounter instead of focusing on the bad. Laugh often. Focus on the future and not the past. Play daily. Stand up for what and whom you believe in. Work hard. Never quit on your dreams but do everything you can to make them come true. Remember no one can change your attitude but you. Learn a new skill or hobby.  Live without regrets. Trust the only true Savior. Get healthy. Cherish every single day.  And most importantly, never give up.

Happy new year to all our dear family and friends.  You are loved!

Merry Christmas! We wish you all a beautiful holiday weekend and hope you are able to enjoy time with family and friends.  This evening we stayed home while Travis’s parents came over for our yearly tradition of fondu, opening presents, eggnog, reading The Night Before Christmas (Travis received the book in 1972 from one of his great aunts), games.  Earlier in the afternoon we took some family pictures, and thankfully Ryan did pretty well for them; we never know if he’ll cooperate or not.  Unfortunately he ended up having a very rough night with constant seizures.  Even after giving him 4 mg of Ativan through his feeding tube (which would knock an adult 0ut but didn’t even make him fall asleep because he gets it so much) the seizures persisted.  He is now in bed, and Travis and I are praying the seizures stop; we’ll definitely be keeping an eye on him tonight.  It’s always scary when he carries on like this and it added a level of stress we would rather have not dealt with on Christmas Eve.  But like every other day, his seizures come and go as they please and unfortunately this has become our normal.  Grandpa kept a watchful eye on Ryan all evening.  Hopefully tomorrow will be better because we certainly have a full day planned.  Much love to you all!  Happy holidays!

Trevor is at the stage that he is “over” elementary school, bored and ready to move on to jr high.  He and his friend Logan were out shooting hoop at the nieghbor’s today in this beautiful weather. The kids are sure enjoying the warmer than usual temps and take every opportunity they can to be outside while it lasts.

Sidney starts club volleyball in two weeks and has already been to a few pre season practices that have “kicked my butt” as she says. She loves it though and is looking forward to her season. She will be very busy after the holidays are over with practice three times a week and nine tournaments coming up. A very dedicated and scheduled person, she will do just fine keeping her priorities straight. Ryan is doing well and is having a lull in his seizures. He goes through these periods every once in a while and we enjoy these times while they last.  Of course I say that and tonight he is having non stop seizures.  Sigh…. His wheelchair will be ordered Thursday and we see the surgeon in two weeks.

This is not the best picture of Travis and me, but it works for today. My silly husband was making all kinds of quirky faces and after my failed attempts of saying “can’t you just be serious for one minute, please? I’m trying to get a picture of us!”, he kissed me on the cheek and I called it good. After all these years I’m still so thankful to be madly in love with my boy.

~ happy holidays to you all ~

I’ve thought so much lately about what it means to live a life of peace.  What does that mean exactly and if the events of my life seem to tumble about from here to there, can I still have peace and live each day really believing what the Bible says about it?  Here are some of my reflections, whether they make any sense to you or not….

peace: the state existing during the absence of war, a treaty marking the end of a war, a state of harmony between people or groups; freedom from strife, law and order within a state; absence of violence or other disturbance a breach of the peace, absence of mental anxiety (often in the phrase peace of mind), a state of stillness, silence, or serenity (in a state of harmony or friendship, in a state of serenity

Love these verses ~

I Thessalonians 5:23 ~ May God himself, the God of peace, sanctify you through and through. May your whole spirit, soul and body be kept blameless at the coming of our Lord Jesus Christ.

I Samuel 1:17 ~ Eli answered, “Go in peace, and may the God of Israel grant you what you have asked of him.”

Romans 15:13 ~ May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Philippians 4:7 ~ And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.

John 16:33 ~ I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.

I have to say this past month has definitely not been a time of peace, and in some ways, it’s really been a depressing, tough, hopeless period for me.  And to be honest, it’s all a state of mind. I know that.  I just told Sidney tonight on the way home from volleyball practice, “if you tell yourself you will hit the ball over the net, your serve will follow your thoughts and make it over”.  But isn’t it true how much our thoughts dictate our lives?  Our actions and words follow suit to whatever is going on in our minds.  I was reminded tonight from a conversation with a dear friend that our Heavenly Father is a God of peace.  He wants so very much for all of us to live in a state of trust, not listening to the lies of Satan who wants nothing more than to shake us up and make us believe we are worthless, our circumstances will never improve, our emotions rolling and changing with the tides to reflect the self doubt and lack of confidence we feel, not aware of the beauty God desires for all of us to live out every day.  I can’t at all say the circumstances that have come to define my life from the world’s perspective are anything that would fit the description of beautiful and successful, yet I know that only by the grace of God, my life does have beauty, that I am a success.  And it’s very simply because in the midst of difficult situations, I’ve figured out how to live in a state of peace where I am trusting the only One who can get me from one day to the next in that state of acceptance and submission. Cause I sure can’t do it myself.  Not that I do it well every day, this living in acceptance and submission thing, because these last few weeks certainly reflect my insecurities and failed attempts at having it all together.  And I guess really it’s not my job to have it all together and know what to do to get from one moment to the next in one piece.  I only know that God’s Word is true and alive today and when He says He is the God of peace, I’ve lived it to know it’s true. He can be trusted with every detail of my life including the health of my son and my frustrations about my work schedule and the day to day issues with my kids and figuring out how to do Christmas and taking care of my marriage and changing my thought process and keeping this house in order and thinking about everything on my to do list tomorrow. I may not do it in beauty from one step to the next every day, but I do live a beautiful life when it is lived out with the peace of God guarding my heart.  I was reminded tonight of the events of our lives that took place in April 2008.  Man was that a tough time for us.  Travis had just come out of the horrific events of January 4th and the emotional court case which followed in March.  Then he had some really tough situations at work and it was shortly after that he humbly told me God was calling him to quit his job.  I was working very part time with four little ones at home, and we were in and out of the hospital with Ryan trying to juggle his diagnoses that kept coming at us from all sides with all his medical instability and the emotions of raising a severely handicapped child.  Yet in the midst of trying to not fall apart otherwise, God called Travis to “quit and don’t look back”.  How does that make sense?  Quit the only stable job we have with nothing else lined up?  Trust God to pay for groceries, medical bills, electricity, gas, clothes, the mortgage?  Quit the career Travis had loved and poured his life into for the past 11 years and was his dream since 7th grade? I look back at that time as the tears well up in my eyes because my husband trusted God to provide and knew he had to obey even when it didn’t make any sense.  And obey he did.  He quit his job with the police department and we waited for God to move and let us know what we were suppose to do next.  Sakes alive was that tough. As difficult as that time was we both had such peace because we knew God would never call us to do something if he was not planning to provide for every one of our needs.  And our needs were met every single day.  We kept food on the table, all our bills were paid on time, we didn’t go without. The support from those around us was absolutely amazing.  I look back at that time and can still feel the searing pain shoot through my heart because I vividly remember how difficult it was to trust not only my husband but also my heavenly father.  We’ve certainly faced our share of difficulties over the years, but I can always think of someone who has it worse than I do, who is struggling so much more in their day to day ability to cope with life or to pay their bills or to keep their marriage together.  It’s not a competition of who has it worse (or better) than the next person, but through it all, I’ve learned to quit trying to figure things out because no matter how hard I try, I can’t make the details of my life fit into a straight line. Instead I try very hard to go with the flow and remember that there is a purpose to every detail of my life. That the God who causes the sun to rise and set every day with prediction will certainly provide the peace and rest I need to get through whatever tomorrow brings.  He will do the same for you.

Mr. Spunky Pants is back!  It’s been a rough week but now instead of dealing with pink eye, the hospital and an ear infection, we are now dealing with two year old behaviors.  So last week we were in the hospital and came home on Wednesday, Friday we were back in the ER for vomiting, Sunday I had to give Ryan an enema, Tuesday he was diagnosed with an ear infection and put on antibiotics and Wednesday we were at the doctor’s office having labs drawn then in the ER for a head CT.  Everything ended up being fine but the nurse at school called us within an hour of school starting and said Ryan couldn’t walk.  I thought they were exaggerating but when I showed up to figure out what was going on, sure enough, Ryan really couldn’t walk but was staggering like he was drunk and falling over.  We never found anything wrong in his blood work or with the head CT but my guess is that his ear infection caused his equilibrium to be very off.  By Thursday he was back to his normal, happy self and he’s been a little stinker ever since.  He’s happy, giggly, noisy and into everything.  It’s fun but aggravating at the same time when we are trying to get stuff done around the house or eat dinner as a family and here is Ryan trying to throw his diapers or the bathroom soap down the stairway or slamming doors repeatedly laughing the whole time.  It’s funny how Ryan goes through stages of development so slowly.  Right now it’s like having  a curious, obstinate two-year old in a big eight year old body.  He’s decided he doesn’t like to go to bed and becomes dead weight when we try to get him to walk to his room, or he tantrums and hits his head on the side of the bed when we force him to go to bed.  But he appears to be healthy and pain-free so even if he’s a stinker, he’s doing well.

Today we are going to an event at church to pack food for people in Liberia then we have a Christmas party tonight and I also have to work.  I never did post about Brad’s birthday party but we had nineteen eighth graders here which was loud and crazy but fun.  Brad and his friend Nathan decided that instead of presents for their shared party, they would raise money to feed people in Liberia since our church is doing a fundraiser for this project.  We were very proud of them for being selfless and thinking of others, and raised $280 for the cause ($77 feeds one person in Liberia for one year).  This weekend they are going to speak at both church services about the money they raised.

Otherwise things are well and everyone is doing OK.  We’ve been busy like most families and are not at all ready for Christmas. Travis and I are planning on going on a couple dates in the next week to get things taken care of hopefully.   Thanks again to those who were so supportive these last couple of weeks.  Much love to you all.

I had a post already written in my head but this morning as I sit down to type it, the words just won’t come.  Instead I’m sitting here with tears streaming down my face cause it’s one of those mornings.  One of those days that starts out just fine then all of a sudden it changes and heads another direction, a direction I didn’t plan or want to go today.  My list of things to do is this kind of stuff – pick up Ryan’s diapers, formula, supplies at the home health store, make a few calls, lunch with a dear friend.  But that all changed when Ryan banged his head the whole way to school (very strange for him) then proceeded to stagger, holding on to me with a death grip, into school.  He’s off, I don’t know why, but he’s not right.  I’m sure it’s seizure related because he’s kind of spacey and simply can’t walk straight, reaching out for someone or something to grab onto to steady him. Or it’s a sinus infection because he bangs his head a lot with those. I am simply guessing. If only he could tell me.  So as I stood there in the main lobby of the school with two paras and his SPED teacher around us, I knew I had to take him home.  And most days it wouldn’t be a big deal; I’d just chalk it up to raising a kid with intractable epilepsy and the rest of the long list of disabilities he carries, that this is the way my day is lived out sometimes.  But today it’s hit me with a ton of bricks.  And I have no idea why.  It just did.  My heart is heavy, my tears are warm and fresh on my cheeks, the pain is searing right through the center of my heart.  Because some days it seems more real, more painful, more isolating, more despairing, more alive.  Some days I don’t want a son who has so many health problems.  Not that I don’t want my son.  I love him to pieces and my heart can’t contain the joy he brings to my life.  It’s the isolating, lonely, never-ending hurt that never goes away I can do without.  I’ve been reminded far too many times in the past week or so how Ryan’s disabilities have changed our lives.  I’m usually very optimistic about it, staying cognizant of the fact God gave us to Ryan for a reason, that He was very intentional in forming Ryan exactly as he is for a very specific reason.  Knowing I am supposed to be his mom and working hard to do my very best with the skills, resources, events that shape my life in so many ways.  Yet there are days like today when the flood of emotions overwhelm the gates of my heart and I simply can’t hold it closed any longer.  And I weep.  

I try very hard not to let the negative, feel sorry for myself, woe is me attitude get me down very much and have learned to pull myself out of it quickly when I do.  But sometimes life just gets the best of me and I need to have a good cry.  There’s been so much going on lately not only with Ryan but in other areas of our lives that have been very painful and difficult to face.  I feel like we have been taking one step forward and two steps back lately and it just gets old.  But I know it’s a season and all seasons do eventually change.  I can’t make things change that God intends to keep the same and in the same way, I have no control over some of the difficulties we are facing.  So while my cheeks may be freshly marked by the tears that just keep coming this morning,  I know my heart can trust that tomorrow is a new day.  Today, I’m thanking God for tomorrow, whatever it may bring.

The LORD is close to the brokenhearted; he rescues those whose spirits are crushed.  ~Psalm 34:18

Do you not know? Have you not heard?

The LORD is the everlasting God, the Creator of the ends of the earth.

He will not grow tired or weary, and his understanding no one can fathom.

He gives strength to the weary and increases the power of the weak.

Even youths grow tired and weary, and young men stumble and fall;

 but those who hope in the LORD will renew their strength.

They will soar on wings like eagles; they will run and not grow weary,

 they will walk and not be faint.

~ Isaiah 40:28-31

It’s been a rough couple of days since being home from the hospital.  Ryan did OK Thursday but yesterday we ended up in the ER again.  I gave him his noon tube feeding and he proceeded to projectile vomit, cough and gasp for air immediately after I was done.  He coughed quite a bit for the next twenty minutes or so, and after talking to the PA, we took him in for xrays.  He had abdominal and chest xrays and the ER doctor said everything looked fine, sending us home with a script for Zofran for nausea.  I called our pediatrician and talked to him on the phone; he looked at the xrays and said they looked OK to him too.  So we are taking it very easy with the fluids but are having a difficult time because his stomach does not seem to want to digest anything.  Last night I gave him just 2 ounces of pedialyte and two hours later, I got that same 2 ounces right back out.  Why his stomach is not emptying right I don’t know.  So now we are giving him 2 ounces of fluid every two hours and so far he has kept that down.  Unfortunately I’m not sure how long he can maintain this without either tolerating more fluids or ending up back in the hospital for IV fluids again.  He is happy and does not appear to be in pain, but this morning he is quite weak.  He still has not eaten by mouth for a week and has not stooled yet either.  It’s disheartening to keep worrying we will end up in the hospital again if things don’t improve, but we can’t let him get dehydrated again either because that causes all kinds of other problems we don’t need.

I don’t know if I said earlier or not, but I rescheduled Ryan’s wheelchair fitting (a 2 hr long appt) for December 15th which really isn’t too much of a delay.  It will be several months before we would get it anyway by the time they get insurance approval then have it made.  I simply can’t carry him anymore and can’t get him in and out of a grocery cart because he is so big.  I don’t need permanent back problems from Ryan; I already have back issues that come and go from lifting him so much.  I think the wheelchair will help us tremendously because Ryan can’t walk long distances and it’s impossible to shop or go to games, etc, without something for him to sit in.  His special needs jogger stroller has been a godsend but he’s getting too big for that too.

The appointment with the neurosurgeon was rescheduled for January 3rd which is the earliest I could get in.  I don’t know how long that will prolong his surgery but we can’t get him to surgery until February anyway because Travis doesn’t have any vacation until then with his new job.  And I just used the rest of my time bank this week with Ryan in the hospital so I am also out.  Hopefully I can get that built back up and at least have on week to take off before Ryan heads back to the OR.  It’s been impossible to get my time bank built up with him.  I’ve taken time off just for hospitalizations quite a bit – two weeks last November, a couple of days in January when he was hospitalized for seizures, a few days in June when he had surgery for his stimulator placement, a week for this hospitalization.  At least I have a job that is flexible so I can move my days around.  I am blessed to be able to work 24 hrs a day, 7 days a week so I have flexibility which helps so much. And of course I took a few days off when I went to the beach with my sweet friend Becky in September (now that was heaven!).  Wish I could go back.

I love the above verse especially on days like today when I feel so tired and weary. I try to stay so strong and always remind myself that God didn’t give me one bit more than I am able to handle with His strength.  But some days it’s just hard.  And today is one of those days.  I grieve over so many of the circumstances that have occurred in the past eight years, many with Ryan, some with other life changing things that have happened, and others simply being the way life goes.  I know God has a perfect plan for us but I’d be lying if I said I am always faithful in believing it.  Thankfully He never grows tired and weary like I do.  It’s a journey and I’m just trying to do my best to make every day count and do what I’m suppose to be doing here.

When I stand before God at the end of my life,

I would hope that I would not have a single bit of talent left and could say,

 “I used everything you gave me.”

~ Erma Bombeck

That’s right.  Lots of sleep to the tune of a 5 1/2 hr nap yesterday morning then another 2 hrs in the afternoon.  And now he is back down for another nap today.  So while he is doing a good job of catching up on sleep, he is still not eating or drinking.  His last drink or handful of Cheerios was Sunday, I believe.  He refuses anything oral so thank God for that g tube so we can get formula and water in him somehow.  He has not thrown up since he’s been home and is very happy and noisy although he’s not overly active.  He still hasn’t pooped either so it’s been since Saturday now.  I’ve given him meds to help that along and granted, he hasn’t eaten for close to a week, but xray shows there is stuff to move on out.  I know, too much information for some of you!

Here are a couple of pics from the hospital I haven’t bothered to download until now.  The first one is right after we got there, and the second one is from day two in the net bed.  I just thought it was so cute how he was laying with his legs tucked under him like a little baby.

Tomorrow we are supposed to get 5 to 8 inches of snow but trying to forecast that around here is not always accurate as everyone knows. So we’ll see.  The kids, of course, are thrilled to get snow, and I guess it’s time since we have been so blessed to make it this long without any snow or ice.  And tomorrow night is Brad’s big party with the official count at sixteen 8th graders I think.  It will be fun (for the kids!) because all they are going to do is watch football, goof off and eat way too much food.  Same thing they always do! Sidney and Trevor are going to Travis’s parents house to spend the night, and I’m sure they will have lots of fun.  They are going to make and frost sugar cookies, play games.  They always have a great time over there. Otherwise we don’t have any big plans around here except to get Ryan healthy and think about doing some shopping since I don’t have one present to put under the tree.  I’m usually much farther along with that stuff but at least we have the tree up and the house decorated.

Tonight everyone is going in different directions with the usual weekend sleepover stuff, and they all have plans.  Travis is going to work at the airport tonight (or as I call it, social time to catch up with friends there), and I’ll be home with the little guy cleaning, paying bills, laundry, all that fun adult stuff we get to do.

Happy snow to you all!

Ryan and I are home and now I can update from the computer and not my phone which makes it much faster and easier to type!  Ryan was seen Wednesday for pink eye and by Friday started throwing up.  He was sick through the weekend, and on Sunday night we contemplated taking him to the ER for fluids but decided to wait it out and see if he turned around Monday.  It became obvious Monday morning he wasn’t getting better and instead was very weak and lethargic, so I took him to our pediatrician who wanted him admitted in Omaha instead of Lincoln due to Ryan’s extensive history and the fact Children’s can handle special needs kids much better than the small peds unit here.  So off he and I went.  He got a huge IV fluid bolus, labs and x-rays done right away then it was on to a lot of nothing.  Anyone who has spent any amount of time in the hospital knows it’s a lot of sitting and waiting for results, time to pass, improvements, doctors to round.  The radiology report came back Tuesday morning and said Ryan has an ileus which is basically a portion of the small intestine that isn’t moving.  Because he was dehydrated and his electrolytes were off, his bowel decided not to move which is why he threw all his fluids up 15-20 minutes after he drank or had a tube feeding.  He was also dry heaving a lot which I’m sure made him very uncomfortable.  So with bowel rest and a whole bunch of IV fluids, Ryan was soon looking pinker and perked up although he didn’t hanlde the increased fluids Tuesday and threw up again so we had to proceed very slowly. He peed so much yesterday we changed his sheets at least six or seven times because his diapers couldn’t hold all the fluids he was passing…..and we were changing his diapers every hour!  This morning it was obvious Ryan was back to his normal happy, loud self. His bowel sounds were still hypoactive but not as quiet as Monday and Tuesday.  The doctors said in rounds this morning they wanted him on his three cans of formula a day and whole food too before he could leave, but at noon the hospitalist came in and said as long as he kept his 8 ounce can of Pediasure down for two hours, he could go home today.  He and I are both very happy to be home, and I am especially glad to sleep in my own bed tonight instead of the hard bench and flimsy mattress they call a bed.  Everyone knows you don’t go to a hospital to sleep or relax and I didn’t get a lot of either.  I’m keeping Ryan home for the next two days to make sure he gets back to his normal self, plus he is still weak from not walking or eating solids for three days so he will need some time to rest and recuperate.  He still has not eaten anything so I’ll try to slowly introduce solids maybe tomorrow and see how he does but I don’t want to go backwards and end up back in the hospital.

Unfortunately we missed our appointment with the surgeon on Tuesday, and Ryan was supposed to be fitted for a wheelchair tomorrow at Madonna but I cancelled that as well.  Otherwise everyone is well.  Brad has a band concert tomorrow night then Saturday is his 14th birthday party with his best friend, Nathan.  They are having a Big 10 football party with about fifteen of their closest friends.  I’m sure it will be loud and obnoxious here but they will have fun.  Nathan’s parents, whom we are friends with, will also be here so we’ll watch the game and keep the kids in line.   Brad’s actual birthday is Sunday so I’m sure we’ll go out to eat after church wherever he wants to go.

Sidney and Trevor are doing well and nothing is really new for them right now.  Travis enjoys his job and now has his own cases; he really likes the flexibility this job offers and that he can work from home a lot of the time.

Thanks for all the sweet messages some of you have sent on fb and for the prayers.  They are all very much appreciated!

Ryan has an ileus which means a portion of his small intestine is not moving. It’s sort if like a bowel obstruction except there is gas and dilated bowel instead if an obstruction if that makes any sense. We treat it with rest and wait for it to wake up and start moving again. He has had nothing to eat or drink for over 24 hrs except he did keep his meds down last night and this morning but they were given with only one ounce of water. He is now hydrated and peeing so much they have turned his fluids down to a maintenance dose. We just gave him an ounce of Pedialyte through his feeding tube and if he can keep that down we’ll try again in 30 minutes and keep trying to give oral fluids in small amounts. Travis and the kids are coming up this evening and I’m going to get out of here with the older kids for a while since I’m stuck here all day. Please pray his bowels start working and he keeps fluids down. I want to get home soon but also don’t want to leave until I know it’s safe for Ryan to do so.

Update: we are not going home today because the doctor wants to proceed very slowly with feedings as his bowels are very quiet and his chances of throwing everything up are high. Hopefully tomorrow…

Ryan was admitted to Children’s Hospital last night for dehydration and weakness. He’s had a stomach bug since Friday and couldn’t keep anything down; plus he was dry heaving a lot. He’s had a lot of IV fluids, and looks much better today. His labs and xrays all looked good so it appears he just has a nasty virus that really got him down. We should go home this afternoon if he can keep fluids down. Travis is home with the older kids, and everyone there is fine. Sidney is home again today with a milder case of this same bug Ryan has. We are disappointed to miss Ryan’s appointment with the surgeon today, but we need to get him healthy.

T ~ Travis….I’m thankful for a man who is still in love with me after 17 yrs of marriage, keeps me laughing, is my biggest cheerleader, puts me in my place when I need it but does it in love, is an interactive, fun dad, works hard to provide for his family, loves Jesus, has a wonderful sense of humor and is very particular about his coffee!  Travis loves his job and next week starts with his own clients.  His job is flexible and he pretty much makes his own schedule except for a few meetings that are on the calendar every week so he will be able to work from home a lot if he wants.

H ~ Home…..Over the years I’ve come to love and really cherish these four walls around me.  They are not just a house to place our stuff and come back to every night.  These walls….they are a home.  A cozy home filled with six noisy people who love each other very much and like to have fun.  We’ve spent a lot of time lately dancing, playing charades, laughing, doing devotions together, spending time curled up on the couches talking about life, living it out together through the good, the bad and the ugly with forgiveness, acceptance and grace.  My kids and husband are my life and I am so thankful we have a loving, warm home to share…together.

A ~ Appointment…..Next Tuesday is Ryan’s appointment with the surgeon.  They should have insurance approval by then so we can get this next/last surgery on the calendar in the next couple weeks.  We have decided to wait until February if possible to schedule the surgery so Travis will have vacation time he can use since he just started a new job two weeks ago.  For those of you who may not remember, he needs a corpus callosotomy (cutting the nerve connections between the right and left frontal and temporal lobes so his seizures can’t jump from one side of the brain to the other) which means a six-hour surgery and four days in the ICU.  I’m ready to get this surgery over with because it will hopefully provide some relief from these awful seizures that always make him thrash and cry out like he is in pain and often times he falls over.  We can’t stop the seizures completely, never will, but hopefully we can decrease them to a point that is manageable.

N  ~ Nosey kisses…..Ryan still hands out his nosey kisses numerous times throughout the day.  He is well-known for them, and most people who are around him know that if he shoves his head toward you and gets in your face, he wants to give you a nosey kiss.  It’s his way of giving acceptance and showing you love.  You know, through everything we’ve been through, everything he’s been through, I am beyond thankful we still have a little boy who knows how to love.  He can’t love and express emotion like most people, but he can still come sit by us on the couch, give us nosies, make eye contact and giggle at our silly expressions and songs.

K ~ Kid one….Who else but Brad?  He’s a giant now and is already 5′ 9″ and still eats constantly, rummaging for food every time I turn around.  And I’m not sure where he puts it all.  He’s also doing well but has had some issues with socializing because he thinks the only important thing in life these days. The real issue is that until now he has been able to get all A’s and a couple B’s without studying at all and now school is getting a bit harder. So we are having lots of conversations that school has to be his first priority and not his friends; it doesn’t go over well with a very social teen who will be 14 next week.  I’m not sure how he got so old so fast but at least he’s not getting his permit and learning to drive this year!

S ~ Sidney of course!  She is doing well and had all A’s and one B on her progress report that just came home this week.  I used to worry about her and at one time thought she had dyslexia like her dad because she struggled so much with school.  But this year she has really taken off and is now in four dif classes and really doing well in all areas.  She’s growing like a weed and even though 12 yrs old often means hormones and emotions, she is happy and content.

G ~ Good food, good company…..Thanksgiving already!  Tomorrow Travis’s parents and my sister (Amy) and her family are coming over.  There will be 13 people here and I can’t wait!  I love to host the holidays and spent today making three dozen rolls, sweet potato souffle, green bean casserole, an apple cranberry dish and chex mix.  Tomorrow we’ll do the turkey, gravy, stuffing and mashed potatoes.  I’m going to be one of those moms who tells her kids to bring everyone home for the holidays when they are in college so I can bake and cook up a storm.  To me it’s not stressful but fun!  And of course we’ll spent the afternoon playing cards which I can’t wait for.  My sisters and I have a tradition of playing Nerts when we are together which is a card game we are fiercely competitive about and played for years with our mom when she was alive. The day would be perfect if only Carrie was here to play with us!

I ~ Infection…..Ryan spent the entire day in bed.  Literally.  He didn’t wake up til nearly 9 am which is  unheard of for him and when I got up at 11:00 today (nap after working all night) he was sitting in bed and refused to get out.  He fell back asleep and didn’t wake again until after 3:00 this afternoon.  I finally pulled him out of bed and saw his red eye and knew right away he has pink eye which everyone knows is very contagious.  Not the best to be thing to be spreading around with 13 people in the house tomorrow.  Thankfully after a 4 pm call to the doctor and a visit to make sure nothing else is going on since he can’t tell us, we started him on eye drops.  He’s acting more normal tonight but having a massive amount of seizures.  I’m pretty sure a hefty dose of Ativan is coming his way soon.

V ~ Velvet….OK totally random but my tired brain isn’t coming up with anything for my attempt at creativity with this Thanksgiving acrostic.  Now go figure out what that word means if you don’t know!  But velvet is nice and makes me think of Christmas which is coming very soon.  But one holiday at a time as I like to say and tomorrow is turkey day!

I ~ I as in me….I’m good!  My life is rather boring these days and I think boring is good.  I’ll take it.  I’ve enjoyed all the holiday planning that comes with this time of year and can’t wait to put the Christmas tree up this weekend, start singing along to Christmas songs blaring from the computer, make loads of peanut butter balls, create Christmas lists…..

N ~ Number three…..Trevor that is!  He’s doing great and decided no for sports this winter after playing basketball for the past two winters.  He’s simply decided football is his thing and has no interest in anything else which is fine since I’m sure that will change next year in jr high.

G ~ God, my Heavenly Father…..He knows what I need when I need it and has never let us down providing for our every need.  It’s been a very humbling year as I look back to all the help we’ve received to get through Ryan’s surgeries, hospitalizations, therapies, Travis’s school and my work schedules as he finished up his masters degree.  And all along the way, the God who promises that even the birds of the air who do not put away and store food are always fed, has provided what we’ve needed in so many areas. We have been blessed and are so very grateful.

I absolutely love this time of year!  Sitting down with all my recipes to plan out the Thanksgiving meal, finding new recipes to try in addition to the ones we make every year, making a list of all the cookies and other baked things we want to make for Christmas, watching the kids come up with their Christmas lists, decorating the house, watching all the leaves turn colors then fall.   We all love the holidays, as most do, but this year we are especially thankful Ryan isn’t recovering from brain surgery like he was last year.  It was a pretty stressful time for us and by the time Thanksgiving came around, we had only been home from the hospital for one week and he was in no shape to celebrate anything.  In fact one year ago today was a Sunday, and we were sitting in the ICU watching Ryan sleep the day away preparing for the third and final brain surgery in eight days.  I don’t miss that hospitalization one bit, and this year will be different thankfully.  Aside from Ryan’s continued seizures, everyone is healthy and doing very well which we recognize as a huge gift from God.  I have the Thanksgiving meal planned (we will be home with Travis’s parents and my younger sister’s family) and have been laughing at the kids’ Christmas lists.  Sidney said “I don’t want anything at all.  I’m perfectly happy and don’t need anything.”  What a blessing to hear that from my 12 year old!  I’m thankful for her thankful heart.  Trying to get her to come up with something has been tough; I’ve given her ideas like clothes, gift cards, volleyball stuff, iTunes gift cards.  She doesn’t want any of it but instead said “If I have to have something then give me money and I will give it back to you to put in a vacation fund.”  The kids all want to take a vacation but it’s simply not been something we’ve been able to do with Travis in school for the past three years and Ryan’s four surgeries last year.  I hope this year is different, and we even tried to get a vacation through Make A Wish but were denied because they said Ryan doesn’t have an illness that could possibly end his life (which is not true at all).  But with Ryan’s next surgery around the corner in January or February, we won’t be able to go anywhere for a while.  I can’t tell you the guilt I feel for that, but I also realize it’s not the end of the world to not take a big vacation.  I just hope they continue to understand.  Trevor also came up with absolutely nothing for Christmas but when pressed he did say he wants an ipod.  He’s also a very content child who doesn’t ask for much of anything.  Then there’s Brad who has a list of 27 things he wants ranging from an ipod to gummy bears.  He also says he is content but was more than able to give us a list.  I’m just very grateful that my kids understand contentment doesn’t come from things and that you can’t buy happiness.  Of course I want to give them the world, but their lives have been filled with some pretty tough situations and they’ve grown up fast learning along the way that you are only as happy as you choose to be, whether or not you’ve been blessed with vacations and the latest gadgets.  We try to stay focused on I Thess 5:16-18 ~ Be joyful always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

Travis said he thinks he is really going to like his job.  He has a week of basic orientation under his belt and is back at the downtown office again today for one last day of orientation.  Tomorrow he’ll be at the office close to our house where he will be based out of and will start training for his position.  It’s been a rough transition working Monday through Friday, and as he said, now he’ll have to take care of the yard work on weekends like normal people which he doesn’t like.  He’s been very spoiled for years being able to have days off during the week, working 12 hr shifts.  But in the end, I think this job will be something he really enjoys.  The kids are definitely liking that he gets home every day by 4:30 and that we’ve been able to eat dinner together every night (I love it too).

This weekend we were able to go on a family date on Friday – bowling and dinner at Skeeter Barnes – with the three older kids.  Then Saturday we spent most of the day with some very dear friends from Omaha and yesterday we stayed very busy with two volleyball games, lunch with my dad and a big family dinner with Travis’s family at Grisanti’s.  We’ve eaten out way too much this weekend, but it’s been nice to see so many people we care about.

Blessings to you all!

One year…..how is that possible?  One year since we watched as they wheeled Ryan down the hall to surgery.  One year since they opened up both sides of his skull and placed 88 electrodes directly on his brain.  One year since he spent 10 days in the pediatric ICU with tubes and wires everywhere.  One year since we sat at his bedside, 24 hrs a day, praying and pleading with God for those three surgeries to stop his seizures.  One year since they removed most of his right frontal lobe and gave him three craniotimies. One year and the seizures persist with a vengeance.

My heart is heavy with the thought of putting him through a fourth brain surgery, but I know it has to be done.  Travis and I promised Ryan and each other we would do everything possible to save our little boy from these nasty seizures, and this is our last option.  And they have literally destroyed his brain leaving him as a one year old in a big eight year old body. They have taken his ability to speak, to use his hands correctly, to walk without faltering, to live any semblance of a normal life.  And though the seizures have wreaked havoc on his precious little body, they have not destroyed his spirit.  Ryan’s seizures have not taken away his smile, his giggles, his ability to love in his own little way and to receive love.  They have not destroyed his ability to go to school everyday, interact with people and live a full life.  He may not live life like most of us, but Ryan does have a life full of people who love him and think the absolute world of him.  He lacks for nothing because he is loved, spoiled, doted on, prayed over and accepted just as he is.  I like to believe Ryan is changing the world around him, causing people to see that in spite of being broken, he has a purpose and God is working in him in ways we simply can’t see.

Surgery didn’t stop his seizures, but it did put a smile on his face and a giggle in his belly that we are enjoying every single day.   I have no idea what the future looks like for Ryan, how long God will let us keep him here with us, what will happen if his seizures stay out of control.  I can worry and fret about it all day if I let myself.  Instead, every single day, I have to focus my mind on all the beauty Ryan has brought into our lives, how he’s changed us to realize God has a plan much bigger and better than we could ever have imagined.  Because of Ryan we dream of starting Ellisbrook where disabled adults can live with families on an acreage with animals, a greenhouse, a garden, living out their lives being loved, accepted, cared for and wanted. And we trust God will provide the team, the finances and the path in his timing.  It’s exciting and scary all at the same time, but we believe with all our hearts God would not have put this dream in us if he did not intend to make it a reality some day.

One year….and although Ryan has not improved medically, he is doing exactly what he was sent here to do.  He is filling the world with joy, teaching others about acceptance, living his life with purpose the only way he knows how……exactly as God intended him to be.

my sweet little sleeping angel

Trick or treat, smell my feet, give me something good to eat!  You all know that saying, right?!  I can do without the feet smelling part though.

Halloween…at our house that means we had one kid who said he’s too old to dress up and go door to door, another who – 30 minutes before she was supposed to be at her friend’s house – couldn’t make up her mind what to dress up as, one who hates, loathes and despises dressing in costumes and another who was perfectly happy sitting on his cousin’s birthday blanket squealing and rubbing the soft material as I tied the knots.

So in the end, we got this…..

Isn’t she stinkin’ cute?!  Zombie girl turned out perfectly and loved the reaction she got from people.

The old man who was missing the glasses and hat but this is the best I got out of him.  Trevor was out with three of his best friends and won the prize for Most Candy Collected.  And as I predicted, just a block or two down the street the shirt, beard and pipe ended up in the bottom of his pillow case buried under all the candy as he trick or treated in a white shirt and khakis.  I think from now on he’ll go as a Husker fan then he doesn’t have to dress up at all since he hates it so much.  And by the way, it must be a genetic quality to hate to dress up cause I was the same way when I was young.

The lighting in our family room stinks at night but Ryan’s smile lights up the room.  He had so much fun rubbing his hands and feet on the blanket so now I know what he’s getting for Christmas – new tie blankets – since his is so old and has lost the softness to it.  And after taking the pictures and putting the kids to bed, I realized my phone camera was on all the wrong settings so the inside pictures didn’t turn out very good.  Oh well….like I say about a lot of things…..in the big scheme of life, this is not a big deal.

And last but not least, the family member who thinks life is a big party and spends most of his time goofing off and laughing.  I have to say I love Brad’s personality and his ability not to take life too seriously.  I didn’t get any pictures of him and Nathan in the house but this is him in my sunglasses as we were leaving to take Nathan home.  Those boys….we all say they share one brain cell between the two of them, and I’m sure it’s an age thing. They spent the evening playing video games and eating over half of the candy we were suppose to be giving away at the door.  Nathan’s goal was to eat so much candy it made him throw up.  Sounds about right for an 8th grade boy.  I just shook my head and said “if you throw up on my carpet you’re dead meat”.

So now we have loads of candy the kids will pig out on for the next couple days until I get into my you’ve-had-enough-candy-to-last-you-a-year mode and take it all away.  I vividly remember the dentist talking to my mom when I was young, and he said it’s better for your teeth to eat lots of candy in just a few days than to spread it out over a few weeks.  Whether or not that’s true, it’s been my Halloween candy motto for years now, and I doubt it will change any time soon.  So here’s to Reeses Peanut Butter Cups, Sour Patch Kids and Butterfingers (all my favs)!  I had my share of candy too.

Travis went from this…..

to this…..

Thanks to everyone for your support, prayers and encouraging words over the past several months.  It’s been a long wait but finally, the job search is over!  This is the first time in our seventeen years of marriage that he has ever had a Monday thru Friday, 8-4 job.  Everyone knows police officers work 24 hrs a day, 365 days a year, and he went from that to being a full-time grad student.  It’s been 3+ years but Travis will be back in the work force full-time as of November 7th.  His official title is Aftercare Specialist which is a fancy title for a master’s level case manager at KVC, a contracted company that works with the city.  From my understanding, he will carry a caseload of families who have been discharged from HHS whose kids were in foster care, CPS, the juvenile justice system, adoptions, etc and make sure their needs are being met, and they are getting the services they need so they don’t fall back into the system again.  He’s very excited; and so am I!  Hopefully this will be a smooth transition for everyone.

On another note, we have an appointment to see the surgeon on November 29th, and from past experiences, surgery will probably be scheduled within a week from that meeting.  I’ll update you after we see Dr Puccioni and know more about what to expect post op.  We would appreciate your prayers for Ryan as his seizures slowly continue to get more intense and frequent on a daily basis.  He’s such a trooper though and between seizures is still the happy little boy we love so much.

“A man’s heart plans his way, but the Lord directs his steps.” Proverbs 16:9

~ Friday ~

Brad and Trevor were both out doing stuff with friends until late in the evening, and Sidney had a friend spend the night here.  Rarely does a weekend go by that the kids are all home anymore which is fine because I am thankful for their strong friendships. It was a rough day for Travis and me, anyway, as we weighed our options regarding what to do next with Ryan. We did make the decision final to go ahead with surgery.

~ Saturday ~

Brad went to the pumpkin patch with a friend in the morning and I told him he wasn’t allowed back in the house until after six so he stayed at the friend’s house all day and watched football.  Trevor and Ryan headed to gpa and gma’s for the afternoon so Sidney could have her birthday party boy free!  She had six great friends over (and was sad a few others couldn’t make it), and they ate lots of snack foods then made pumpkin people with gourds.  It was a complete hit and an idea I got from Family Fun magazine.

So they didn’t quite turn out exactly the same, but ours were still cute.

This is the one I made….no one is ever too old for a little arts and crafts fun.

They are all such sweet girls and aside from jabbing a wire into the palm of my hand trying to get the gourds to sit on top of each other, everyone had a fun time.  Mess and all!

~ Sunday ~

We tried a new church for the second week and will most likely be staying.  It’s a very difficult decision to leave our church family of five years but because our church is so small, the kids are not getting the Sunday school and Wednesday night groups we want them to have.  This church is a good fit (the kids love it) and is also starting a buddy program and Sunday school class for special needs kids and adults which means we’ll be able to take Ryan with us every week….very important to us.  Sidney had two volleyball games in the afternoon, and we all ended the day pretty exhausted.

~ Monday ~

Ryan was fitted for new leg braces which is never fun because he is so strong now and fights the casting process.  One of my friends and I had the opportunity to speak at a college nursing class (taught by another friend) about what it’s like to raise a special needs child.  It was a wonderful experience; I never shy away from sharing our story and also think personal testimony is  a much better way to learn (coming from my college experiences) than just reading about something in a textbook. At the same time it was really  hard to cram eight years of experiences into 25 minutes.  There was so much to say, so much that has happened.  When it was all said and done, I wish I could have shared my faith in Christ because that is the real answer to the question we hear all the time – “how do you do it?”.  We do it because we understand that our job, and Ryan’s, is to change people for eternity.  To bring them to Christ.  To show them God’s love and grace and forgiveness is enough.

~ and today ~

Travis and I enjoyed the  day at home together until it was time to get the kids.  I moved a bunch of plants, and Travis mowed the yard.  I made sugar cookies and cinnamon rolls, he ate the frosting and made chili.  I called the doctor this morning and told them we are going to move forward with surgery so now we wait for an appointment with the surgeon.  Travis and I agreed we won’t let it happen before January so we can get through the holidays without this added stress.  Last year was rough because Ryan was healing, and we simply don’t want to be hospitalized during the kids’ favorite holiday season. Who doesn’t love Thanksgiving and Christmas though?!  I don’t even know if they could get him scheduled before January anyway at this point since these things take forever…..insurance approval, scheduling.  My guess is that we are looking more toward February.  I can’t tell you how difficult it has been these last few days for us to make the decision to go back to the OR again after the year we’ve had.  I don’t even think it’s actually the physical aspect of it for Ryan that is bothering us so much but more the  emotional and mental toll it takes to get through something like this.  And this surgery is going to only require one surgery and 3-4 days in the ICU compared to 3 surgeries and 10 days in the ICU last year.  Remember this?

Boy is he cute! It’s just a lot to deal with on top of kids, jobs, finances, sports, trying to maintain some semblance of normalcy for the other kids.  The emotions of it all are completely overwhelming.  But like the saying goes, “every day may not be good, but there’s something good in every day”.  If you ask me, it’s all about perspective.

We’ve known for quite some time that we are nearing the end when it comes to medical interventions we can try to help Ryan.  Today we saw Dr. Madhavan (neurologist) again in Omaha and had Ryan’s stimulator turned up for the last time.  He said technically we can turn the stimulator up one more time but that would cause it to pulse at a very fast rate which would cause a lot of discomfort for Ryan so that really isn’t an option.  We did spend a lot of time talking about what is next.  What else is  left to do for him?  Over the course of his short eight years, we’ve tried over a dozen medications, multiple EEGs, hospitalizations to monitor seizures, intensive therapies, special diets, three major brain surgeries last November with three craniotomies and two partial right frontal lobectomies, numerous scans, placed a vagus nerve stimulator that has been turned up several times.  So now what?  We are running out of options, and we’ve known that for quite some time. 

Over the years, our goal has never changed – to give Ryan the best life possible, free from pain.  His quality of life is everything, and that is what guides all of our decisions.  It’s not been easy by any stretch.  This is a painful journey but so worth it at the same time because if you know Ryan, you know what a bright light he is in our world.  I’ve said it numerous times and will keep saying it – he brings so much joy to our lives and we love him with a love I can’t begin to express.  It’s just different with him and those of you who have special needs kids understand what I mean.  I don’t love him more than my other kids, I just love him different. 

So where does that leave us today?  We were given three options:

1.  Low glycemic diet:  The short version is cut out/down on the high sugar carbs.  This option isn’t a cure-all but something to throw out there we haven’t tried yet.  We spoke with a dietician in the office today, and she basically said as long as he is getting three cans of Pediasure a day, this diet won’t work because we can’t cut out the sugar content in the formula.  There isn’t another formula appropriate for him that will give him the nutrients he gets from these supplements.  Ryan has such extreme food aversions that we can’t cut this out so instead she said we could always try cutting down on the amount of carbs he eats instead giving him more protein.  So basically we are going to try getting him to eat more protien and cut down on his Apple Jacks and let him have more Cheerios (lower sugar content).

2.  Try another medication called Sabril: I’ll tell you right now this is not an option.  I think the doctor threw this one out just to give us more options but we are not interested.  In 25-33% of patients this drug causes permanent vision changes such as loss of peripheral sight and/or tunnel vision.  How do we justify putting Ryan on a medication when all the others we’ve tried have failed knowing we could cause him irreversible vision loss?  Our goal is to increase his quality of life, not do something that could potentially harm him that wouldn’t even stop the seizures.  The risks are just too high. He already has depth perception problems, fine motor skill problems in his right arm, wears braces on both legs and has poor balance, neglects the entire left side of his body.  And add the possibility of permanent vision loss?   No thanks.

3.  Surgery….again:  This is what I meant when I titled this post “the end is in sight” becasue we really are at the end of our options for Ryan.  As you all know, Ryan had three very major brain surgeries nearly one year ago on November 8, 11 and 15.  While it didn’t necessarily help decrease the number of seizures, it did make  him calmer, happier, increased his concentration.  It did a lot for his quality of life and even though it was hellish to go through, it was so worth it in the end.  So what now?  When we put the stimulator in, the doctor told us the only other thing we can really do is a corpus callosotomy.  This procedure means the surgeon would go in through one of his craniotomies and go deep into the space between the two hemispheres to cut the nerve fibers in the front 2/3 of his brain.  This would keep the seizures from jumping from the left frontal hemisphere where they are originating to the right side making the seizures lose some of their strength.  Right now he has a lot of small seizures that tend to cluster and also some big ones causing him to fall over, fall off the couch.  The stimulator in his chest doesn’t always stop them.  There are studies out that show increased results in people with the vagus nerve stimulator and this surgical procedure. This is not a cure but an option to decrease the intensity and frequency of seizures; he will never be cured of epilepsy.  It means a six-hour surgery and 3-4 days in the ICU.  Of course there are the normal risks that come with surgery, but long-term, he should not experience any negative effects. 

So, we have some decisions to make about what we are going to do although to be perfectly honest, the decision has already been made.  It’s been a very emotional, difficult, grieving, crying kind of day.  I don’t really know how to put what we are feeling into words, but I tell ya, it’s tough.  Like Travis said, “when do we get a break?” It’s hard to think about putting Ryan through surgery again when he just had four surgeries in seven months.  But, we both want to be able to say we tried everything, gave Ryan the best care out there, never gave up and gave him everything we’ve got.  He’s worth it. 

I don’t have a time frame for all this but we have to call the doctor’s office in the next week to tell him our decision then go from there.  Ryan won’t need any more scans, EEGs, other tests.  We will see the surgeon eventually then wait for insurance approval and a surgery date.  From past experiences, it will be a few months before surgery is on the calendar and as always, we will keep you informed.  I can’t say enough what your prayers, emails, comments here, hugs and encouragement mean to us.  We couldn’t do this without all your support.

If you are dwelling on tomorrow – remember that tomorrow is God’s not ours.

Covering today in prayer will help you not cover tomorrow in worry.

I saw this quote today, and boy did it get under my skin! It’s a very challenging statement, don’t ya think? Hhmmmm…. What did I take the time to thank God for yesterday?  Anything?  But how many things did I complain about?  Probably a lot.  Last night Sidney and I watched Facing the Giants, and the coach said something that made me think.

Your action always follow your beliefs; if you expect defeat then that’s what you’ll get.

I’m pretty sure these two things go together.  If I believe I will have a good day, in spite of circumstances, the less defeated I’ll feel.  The more aware I am of all I have to be thankful for and the more I take the time to thank God for those things, the more my actions will flow from that heart of positive thinking and thankfulness. I want to become someone who continually has a heart of thankfulness, whose first words out of my mouth are positive and uplifting.  I can’t say I’m there right now.  I’m the first to admit I’ve allowed my heart and mind to expect bad things.  Even today at this very moment, I’m waiting to be devastated and have to face the next obstacle head on.  Oh, I have a will of steel and will run full-bore straight into whatever comes my way, but I don’t always do it with a good attitude. Well, it’s true.  I’m fully aware of how defeated I can so easily feel, but I also know how many things I’ve dealt with and learned to live with. I wouldn’t have made it this far without being able to focus on the good, but there’s always room for improvement.  And I’m striving for that.  It takes a lot of self-awareness to change your attitude, mine too.  I can’t imagine how my day would have been affected today if I was only given the things I was thankful for yesterday.  I don’t want to imagine it.  Cause I know it wouldn’t be pretty.

I’ve always loved I Thessalonians 3:15-18 ~ Be joyful always, pray continually, give thanks in all circumstances, for this is God’s will for you in Christ Jesus.

What a challenge!  It’s what I’m striving for every day.  I want to be someone who, when asked, immediately says “my day is great!” in spite of whatever I am facing….and really mean it when I say it!  Who is joyful because I have chosen to look at the bright side and stay focused on all that is going well instead of focusing on all that is not.  My life has been filled with plenty of tough adventures these past few years, but I can honestly say I wouldn’t trade any of these experiences if it meant I wouldn’t have received the blessings that have come along the way.  And I am completely humbled by God’s generous provisions. I have so much to be thankful for. I will not live in defeat but instead, strive to live every day so that when I lay my head on my pillow at night, my heart is focused on all the good as I lay all the bad at Jesus’ feet, trusting his promise to take care of my worries and fears.  He loves me more than I am able to comprehend; I owe it to him to live a life of thankfulness.

What about you?  What will you have tomorrow if you are only given what you are thankful for today?  Are you living a life of defeat?  Are your thoughts so heavy with your challenges and difficulties that you can’t even see the blessings?  I’m praying for you today. And I say that sincerely.  Praying God will give you a heart surrendered to Christ, a mind focused on the good, a will of perseverance to tread through the difficulties you are facing right now, a life full of joy.  May God bless you with his presence, fill you with his love and cradle you in his strong, capable arms.

Travis is off on a week-long adventure with his brother, Brady.  He flew to Spokane, Washington, yesterday where his brother picked him up then they drove to Seattle where they will spend some time sight seeing before heading East again to some small town in the middle of Washington that is well-known for their Oktoberfest which happens to be the second largest beer fest in the nation.  Travis and Brady both love beer and music, so I’m sure they will have lots of fun. After another night in a hotel, they will travel back to Sandpoint, Idaho, where Brady and his family live; Travis will be there three more days before coming home next week.  I’m so excited he was able to go do something fun and new; he needed to get away from reality and hopefully will come home refreshed and renewed.

Travis said: “Enjoying my coffee from the original Starbucks at Pikes Place.”

“This is the docks where the boats from China and other countries from that side of the world unload their products.”

“This is where the farmers market has been since 1907.  They have guys throwing and filleting fresh fish (making a big show of it).”

I told him I was jealous as Seattle is one of the few places I have always wanted to visit but have never made it too and that next time, he is taking me with him.  I’d love to rent a house or condo on the coast too.  Someday….

And finally, the boys.  Trevor knew immediately they were by the space needle and wants to visit it someday.  I hope we can make that happen in the next couple of years.

And for the rest of us, life continues on this week.  All the kids are gone tonight so the house is very quiet with just me and Ryan here.  He is spending most of his time either watching cartoons, eating cheese and Apple Jacks or sitting on his sister’s bed which is one of his very favorite places to be.  So basically I have the house to myself since he doesn’t ever want anything.  After working five out of the last six nights (which were all very rough), I am happy to be home and am already very sleepy.  Brad is at the pumpkin patch with a bunch of his friends, both boys and girls which is a first.  He won’t be home until late, so I will be sleeping with one eye opened until he gets back.  Sidney is at Berean’s all nighter with a friend so she will be very tired in the morning; I’m pretty sure this is her first attempt at staying up all night.  And Trevor is at a friend’s house having a sleepover.  Our weekend pretty much consists of cleaning, which the kids won’t be thrilled about as their to-do lists are longer than usual, church and Brad’s championship football game Sunday afternoon.  He has been so bummed that we refused to let him play but with his sprained MCL, he simply can’t do it. It’s hard for him to remember he has a lot of years ahead of him to play sports.  I have to remind myself that he is just a young teenager and this is probably one of the worst crisis moments he’s had so far which helps me put things in perspective with him.

Ryan is doing well in school and remains happy as usual.  On Thursday we see the neurologist and have his stimulator turned up one more time which will hopefully help decrease the number of seizures we are still seeing.  This will be the last time we can change the stimulator settings and then we are done.  No more medications to try, no more surgeries, no more devices, no more tricks up anyone’s sleeve to stop the seizure monster.  After Thursday I will be able to say we have tried it all and done everything we possibly could to help Ryan; there simply isn’t anything left to do.  To say I am struggling with this is a massive understatement.  He just turned eight.  Last week.  He shouldn’t be at the end of the medical rope already but he is.   And I simply can’t do anything about it.  So I’ll do the only thing I know how to do.  Keep loving Ryan and enjoy every single day I get to be his mom.  Get all the nosey kisses I can. Drink in his sweet smell.  Sit on the couch with him clapping and listening to his adorable giggle laugh.  And who knows what is next, what’s around the next bend and hill of this journey.  Heck, no one knows what tomorrow holds.  We aren’t even promised tomorrow. I’m doing what I do best – grasp onto my faith and never let go.  As white knuckled as I feel sometimes dealing with all the medical issues we’ve been handed with my sweet baby, I simply can’t let go of one thing I know to be true.  That God is good all the time (although it doesn’t always feel like it) and knows what I need every second of every day.  He is the one who told me “he is as I intended him to be”.  So who am I to doubt the God of the universe when he so clearly stated he knows what he is doing.  I just can’t.  My faith is too strong.  So for now I’ll make the best of the hard times cause I’ve sure got those down pat.  And I’ll make sure no blessing or giggle or nosey kiss or chance to sit and clap together goes unnoticed or missed.

So as my Seattle man enjoys new sights, new sounds, new tastes and new memories with his brother, I am going to enjoy these days with my kids and keep working on making every single day count.  I want to be able to stand before God some day, too, and hear him tell me “you were exactly as I intended you to be”.  What a challenge.  I hope I make Him proud.

Today we celebrate two very special members of our family….Sidney is twelve and Ryan is eight.  People are always surprised they were born on the same day, four years apart.  Sidney loves it because she gets to share her birthday with her very special brother.  She was at Sadie Jamison’s 4th birthday party when we found out we were having another boy and knew she would not be happy.  During my entire pregnancy from the minute we told the kids we were having another baby, even after we told her she was having another brother, she told everyone she was having a sister named Shayla.  Even up until the day Ryan was born.  And after Ryan was born and she accepted the idea of being the only girl, she would tell everyone she gets to be the only princess.  And that she is!

Sidney is a very independent, organized, full-of-life girl who loves Jesus with all her heart and always puts others before herself.  She often has to be reminded to do what she wants to do instead of always giving up her own wishes and desires to make everyone around her happy.  Smart, beautiful and friendly, she is a girl who knows what she wants and is very responsible and full of life.  Sidney loves to make lists, help around the house, spend every moment possible with her sweet friends and absolutely loves to laugh.  The boys have asked numerous times “why does Sidney always get to be in charge when you are gone?” to which we answer, because you listen to her!  She keeps her brothers in line and is the secretary of the house who always knows what everyone should be doing and when.  Whenever our respite help is here, we simply tell them “if you have questions or need to find something, just as Sidney”.

Sidney, I love you more than I can express with words and am so proud of the young woman you are becoming. I look forward to the years to come when we get to do our girl stuff!  Enjoy your special day and know how excited we are to celebrate YOU today!  Happy birthday, my beautiful girl.

Ryan, where do I start?  You have change my life in ways I never knew possible.  Your dad and I are in awe of your strength and sheer resilience.  You have fought more hurdles and obstacles in your short eight years than many people will fight in their entire lives.  Celebrating your life today is a gift and we are so blessed to enjoy you every single day.  You are loved with a love I didn’t know my heart could possibly hold.  Such a blessing to our family, you have taught all of us to live every day in the moment, to experience the little victories as much as the big ones, to never take anyone’s health for granted, to accept people just as they are.  You live every day in the moment which is how all of us should strive to live and as long as your needs are met – food, shelter, a cozy bed and to be pain-free – you are happy.  Of course you love to have your way which makes us laugh and we usually give in to you if it’s reasonable.  And even though the world sees you as a broken little boy, God told me when you were only a year old “he is exactly as I intended him to be”.  And that you are – made in the image of God, perfectly created and loved.  You may have a lot of labels, disabilities, medical diagnoses and rely on others for one hundred percent of your care, but you are perfect and we love you so very much.  The road we have traveled since your birth has been long with many hurdles, but every second has been worth the trip. Today we celebrate your life and the beauty you bring to our family.  Our hearts are forever changed, our lives forever enriched because you are ours.  I love you my sweet boy.  Happy birthday!