Sunday, October 14, 2012

Missing him

Most of you who read this blog know that our precious Logan went to be with Jesus nearly eight weeks ago. It seems almost impossible to believe that it has been that long. Perhaps the last eight weeks have flown by because it has been a very busy couple of months for us. They boys' birthday was on September 29. So, shortly after Logan's service, I threw myself into planning the best second birthday party for Griffin I could muster. We also took on the task of completing a couple of house projects that had been abandoned since Logan got sick. And while we were at it, we decided to plan a surprise baby shower for our dear friends the same weekend as Griff's party... the house was already going to be clean, why not? We had a wonderful time celebrating our friends and their baby boy on the way on Friday. Then Saturday (their birthday) we filled with a pancake breakfast, a visit to Logan's grave to leave some birthday balloons, our first trip to Chuck-E-Cheese for Griffin's favorite, pizza, and lots of fun games, and then we capped off the night celebrating Papa because it was his birthday too and sent some balloons up to Logan in heaven. It was a really difficult day - we missed our other birthday boy even more than usual - but we found comfort thinking about the heavenly birthday party he was having that put ours to shame, no doubt! Sunday was Griffin's party, and we worked hard to make it a fun day of celebration for him. We had balloons galore, a super fun bouncy house and even a surprise visit from a giant Elmo, thanks to Uncle B! Needless to say, we were all exhausted after a very full weekend.

I turned 30 the following Friday, October 5th, and was able to spend it with Jeff, my sisters, their husbands and some wonderful friends. It was a super fun night, and we made lots of memories! We celebrated another couple of precious friends at a wedding shower the following night, and the next two nights consisted of family pictures with each (Jeff's and my) side of the family. We really went overboard with the family pictures this year, but I know we will all be so glad we did. Now we will have quality pictures with grandparents, siblings and kiddos that we will treasure forever. We have been so blessed by the offers to do pictures of us and our family, we just couldn't pass them up! Then another wonderful friend gave us awesome tickets to see Les Miserables on opening night, so Jeff and I got an awesome mid-week date night. Then this past weekend, my parents kept Griffin so we could go to Dallas for the OU/Texas game. It was such a fun weekend, and while it was tough to leave our baby, we feel so very blessed we got to go.

Like I said, it's been a crazy full time for us. Most days it feels like it's not real, other days it feels all too real. That's why I think it has been so difficult to write any kind of post. I intended to write something the week he passed, and it was so busy and full of things to do that I barely got information about his service posted on Facebook. So many times since then, I have had thoughts or feelings that I planned to share, but for some reason, couldn't bring myself to write them down. For so long, I had fun things to do to get ready for the parties, pictures and trips, and now I don't. I know that many of the things I filled my days with were just that, me finding things to occupy myself. Seeking distractions and keeping busy has been my M.O. The last couple weeks, I've felt called to be more still, to stop filling every minute and seek the only One that can provide what I need. Tonight, Jeff and I finally sat down and read through all the wonderful notes written by those who attended Logan's service. While I had read a few at a time here and there over the last several weeks, it has felt too fresh and been too difficult for me to read through all of them until now. I can't say what was magical about today or tonight. As we were driving home from our niece's seventh birthday party, Jeff started tearing up, as we both often do at unexpected times, and we found ourselves both crying in the car about how much we missed our baby. Even now, as I type, it is so hard to say the words, "I miss him." That is what hurts so much. Everything we do, everywhere we go, every family event or car ride home, he is missing. A part of our family, a part of me is missing. And it hurts more than anything I have ever known. But, I feel like it might be time to start working a little harder on the healing process, so here we are. I know healing is probably still a long way off, but this blog served as such therapy for me during Logan's journey, I hope it might have the same effect now.

Thank you all for your relentless love and support. We have so many people still praying for comfort and peace for us, and for Griffin's complete and miraculous healing. You continue to sustain us and we feel so incredibly blessed by the body of Christ surrounding us.

Wednesday, August 8, 2012

Provision

Once again, I write a LONG overdue post. I wish I had more time to write, and I wish I wanted to spend the time I do have updating the blog. Because Jeff and I both feel strongly that it's important to update those of you who have faithfully supported us in prayer during this journey. We would not have survived to this point without those prayers. So, here goes...

Now almost three weeks home with our little guy, we have gotten a lot of things down. We feel really comfortable with all his meds and with the feedings (pump, formula, etc.), so that is great. We are so thankful to have been able to borrow and find several things - stroller, nap nanny, bath seat, bean bag - to make transporting and positioning him easier and to help give him a change of scenery from the bed in his room. We met our wonderful Sooner Start therapist last week, and she is working on getting him a special needs stroller, a bath seat and even a piece of standing equipment so he can be upright some of the time. So some more specialized equipment will be a huge blessing!

Some of the not-so-great parts are that Logan is very sleepy most of the time. He just doesn't have energy to do much of anything, and that is pretty heartbreaking. He has had some digestion complications that have caused some discomfort and fussy nights, and the poor thing can be pretty difficult to console when he's fussy. As parents, the hardest part is seeing him uncomfortable and unhappy and not being able to do a thing about it. We struggled for a few days with a little day-night mixup, where he was really restless most evenings from 9 or 10 until sometimes 2 or 3 am, so naturally he was making up for it by sleeping a lot during the day. For the last couple days, we have seen very little awake time from him. He seems to be working really hard to breathe, so we're just praying that he is not in any pain or discomfort and doing our best to spend time with him while making sure our other little guy is taken care of.

Griffin is still doing really well at Mother's Day Out. His teachers love him and it seems the feeling is mutual. I am SO glad about this. He has developed a new favorite word, "no," so that is lots of fun for mom and dad! On the other hand, he is still his precious, sweet self a lot of the time. He loves his cuddle time with mom & dad, and has had some really tender moments with his brother - bringing us to tears on more than one occasion. What a little blessing he is!

Last, but most certainly not least, we have been trying to figure out what to say in response to the overwhelming amount of physical support we have received. The emotional and spiritual support - as I said before - has sustained us. But we haven't talked about the financial support you all have provided, and I guess that's because we have yet to be 100% comfortable with receiving it. I'd like to think that we are not proud people, but we are pretty independent, I-can-do-it-on-my-own type people. I'm sure you can imagine how humbling it can be to accept this kind of help, and from many people we don't even know. Nevertheless, we are so, so grateful. People have done countless things for us, and continue to do so - set up a bank account, meal calendar, donated money, brought food, mowed our lawn, done yard work, provided a house cleaner - the list goes on and on. And now, there is a tremendous amount of time and energy being invested in a golf tournament / dinner / auction event that sounds like it is going to be an absolutely amazing event! We are so honored that so many people are selflessly devoting their most precious resources to put this on. We have been able to remain pretty hands-off (by our choice) and we trust that those working on the event are doing so with the same intentions we have.

Our main purpose for sharing our story so candidly has been to give the glory where it belongs - to God. He has been our comfort, our strength, our peace and our provider. A while back, when we were having concerns about bringing Logan home and all the logistics that would entail, the following verse was part of my quiet time...

“That is why I tell you not to worry about everyday life—whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are? Can all your worries add a single moment to your life?
“And why worry about your clothing? Look at the lilies of the field and how they grow. They don’t work or make their clothing, yet Solomon in all his glory was not dressed as beautifully as they are. And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith?
“So don’t worry about these things, saying, ‘What will we eat? What will we drink? What will we wear?’ These things dominate the thoughts of unbelievers, but your heavenly Father already knows all your needs. Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.
“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today." (Matthew 6:25-34 NLT)

God was clearly telling me that He's got this. There is nothing we will need that He can't provide. Though we may feel a little strange about accepting financial help, God is working through the amazing community around us to provide in this way as well. He is so good!

I am hoping to have some more links up on the sidebars so you all can follow along on Facebook and with the benefit event. We are so blessed and so thankful.

Tuesday, July 17, 2012

Leap of Faith

As many of you who follow our journey on Facebook already know, we have had a pretty tumultuous couple weeks. Last Sunday, the 8th, our doctor sat Jeff and me down and told us that after a couple days off the ventilator, Logan's lungs had begun to fill up again. He just doesn't have the strength or the ability cough hard enough to protect his airway, so pretty much any fluid in his mouth, nose or throat ends up in his lungs. After much discussion, prayer and deliberation, we came to the conclusion that putting our baby through any more procedures just isn't a good option for us. The doctor told us that we should start preparing for Logan's fight to soon be over.

Last Monday morning we were gathering our family to say goodbyes and making sure our sweet boy felt as loved and secure as possible. Out of nowhere on Monday afternoon, God showed us He wasn't quite through with Logan's journey on this earth. He woke up, acting happier and more playful than he'd been in days, and his oxygen saturation, respiratory rate and heart rate were steadily improving by the minute. None of us really knew what to think... some ups and downs like this are not unusual for a kiddo in Logan's condition. So we resolved to consider any days with him as a gift and to try to take each day, each hour at a time.

Since last Monday, they have been weaning his oxygen as he continues to do well. His lungs are sounding more clear and his cough is stronger each day. He has really made a tremendous turnaround from a week and a half ago. After more discussion and much prayer, we decided this week to take Logan home. We have done pretty much everything there is to do at the hospital, and it's time we try to live as a family of four under one roof again. We are going home on hospice care, so we will have a nurse come to the house periodically to check on our boy and make sure he is comfortable and pain free. We have spent the week getting equipment (hospital bed, oxygen concentrator, feeding pump) and supplies all delivered and set up at home. Discharge is set for this afternoon, and while we are feeling very thankful to be able to be together as a family again, it is hard to leave our amazing team at the hospital. Seriously, our doctors, nurses, RTs and even housekeeper have been so very wonderful to us. It is obvious how much they love our little guy, and I now consider them to be dear friends. I am tearful as I write about how we will miss seeing them every day.

Of course, we have worries and fears about doing this 'alone', because while we know we are far from alone, it will be a big change for us. As we take this step to try to do what's best for our family, we're working on giving these negative thoughts to God and know He will provide for our every need - physical, spiritual and emotional - as He has throughout this whole ordeal.

We are truly blessed in so many ways and are so thankful for the outstanding team of people praying fervently for our family. We love you all.

Wednesday, July 4, 2012

Happy Fourth of July!

We are so thankful to have had such a wonderful Fourth of July! We got to enjoy the day with Griffin and took him to our neighborhood parade this morning. Then we spent the afternoon at a friend's house, where we swam our hearts out and got way too much sun! He loved every minute of it, and so did we!!

A huge thank you to my dad and Jeff's parents for keeping our sweet Logan company today and to our precious friend Rachel for the most festively patriotic hospital room you've ever seen. We are so blessed!

Tomorrow is a big day for Logan. They are planning to extubate! He is ready to have that silly tube out of his throat. He spends most of his awake time trying to grab it and pull it. We'd love your prayers that he stays strong and breathes like a champ. His feedings are going great. They are using the g-tube exclusively now, and he's up to getting 40 mLs an hour, which is awesome!! His seizures seem to be a little stronger now that he is almost off of the sedation meds, so prayers for those to cease are much appreciated as well.

All our love.

Friday, June 29, 2012

Logan Update: game plan

First of all, we are totally & completely overwhelmed by the response we received this week after the news about Griffin. I wish we were able to respond to every message, text and post of encouragement you all have sent, but our time is better spent loving on our sweet boys so please know that we have read each one and are so very touched. If you have asked a question, I promise we will do our best to respond.

We had a 'care conference' with Logan's doctors yesterday to evaluate where we stand now that we are on day 30 of this hospital stay, and to develop a game plan to get where we want to be. It feels good to know everyone is on the same page and is working toward a common goal. We are so thankful for our team of doctors taking time to sit down with us and talk through every detail.

The surgeon feels like his g-tube site is looking much better, so they began feeding him through it yesterday evening. They started with a very small amount, and he has tolerated it well so they increased the rate this morning.

Neurologically, they feel he is stable enough on his seizure medications to attempt to wean him off of sedation. They are planning to do this slowly over several days and are giving him Methodone and Adivan to curb any withdrawal he may have. He does still have persistent twitching in his face as well as his left neck and shoulder at times, but complete seizure control is not the goal at this point. We want them controlled enough so they don't spiral out of control, but don't want to have to continue to rely on operating room drugs to do it.

From a respiratory standpoint, the goal is to get him off of the ventilator. Once he is on lower doses of sedatives, we should be able to see what his true respiratory status is. They are lowering the vent settings slowly as they lower the sedation, and the idea is that he will need less support as his body wakes up more. If all goes well, he could be ready for extubation as soon as early next week. They have a plan in place to go immediately to a bi-pap machine as soon as they extubate to give him the support he needs.

Specifically, our prayers are these:
- He will tolerate weaning off the sedation meds with little to no side effects and no increase in seizure activity.
- His digestive system will kick in and move his formula through just like it should.
- His lungs will be strong, his airway will be open and he will be able to take deep, consistent breaths without the help of the ventilator.
- Most of all, we pray that our baby will be peaceful, comfortable and pain free.

Bless you all for praying with us!

Tuesday, June 26, 2012

hard to find the words

We began the week with optimism that it would be one full of progress and improvement. While Logan is slowly showing signs he's getting stronger, this is turning out to be the most difficult week of our journey thus far.

First of all, I truly feel that your prayers for Logan are working. He is getting some nutrition (Pediasure) through a feeding tube that was placed down his nose, all the way into his intestine. This way, his stomach is bypassed to allow more time for the g-tube site to heal. So that's praise #1. Second, we have begun to slowly lower his Versed sedation medication. This will hopefully allow him to begin breathing better on his own and allow his digestive system to get moving again. The fear with lowering the sedation is that these meds are aiding in seizure control, and reducing them could cause breakthroughs in seizures. So we're praying that does not happen. We still have a way to go before he is off the ventilator and we even begin to think about going home. But we are thankful for the baby steps at this point.

The difficult part is that we received results from Griffin's genetic test yesterday. Once again, we received news no parent should ever have to. Griffin is affected as well. He has the same genetic mutation as Logan, so he has Alper's too. Other than being slow to walk on his own, he has shown no signs of developmental delay nor any other symptoms, so we were certain his test was going to come back negative. We are planning to consult with Logan's doctors to see if there is anything preventative we can do right now, other than wait for his symptoms to appear. Going through this with Logan has been just about all we could handle, and the thought of doing this all again and seeing another child suffer is unbearable. Griffin has been our joy and our hope, making us smile at all the right times. To say we are heartbroken and devastated would be a severe understatement. While we know in our hearts there is a greater purpose at work, we are really struggling to process at this point.

As always, thank you for your prayers. We need them now more than ever.

Monday, June 25, 2012

Logan update: pray for others

We're working on an update on Logan. Not a lot has changed since our last post, but we promise to update you soon.

Today our hearts are going out to the patients around us and their families. So while you're praying, please also say a couple for these people. We don't know what is going on with them specifically, but my heart is always heavy as I see a new patient admitted to the PICU or tearful family members gathered around a bed. I don't know exactly what they're feeling, but I do know it's a scary and unsure place to be. Since you are the best prayer warriors ever, please remember them today too.

Wednesday, June 20, 2012

Logan update: Groundhog Day

Here we sit, beginning our fourth week of this stay, and feeling kind of stagnant. Logan is still on the ventilator, though they were able to put him on the lowest setting, and he did a pretty good job breathing over the vent. In the last couple days, he has developed some congestion in the lower left portion of his lungs, so we started some new breathing treatment meds to break it up. As of this morning, that area is looking better on the x-ray.
He has also been running a fever off and on since Sunday, but the cultures are all coming back negative for infection.
The g-tube site has gone backwards from a healing perspective. After his bout with toxic shock last weekend and the extreme swelling, he has had a large amount of fluid draining off the site. It appears we are seeing a decrease in the amount of fluid in the last couple days, so there is talk of trying a different kind of tube for a while so we can start feeding him again. He's been on IV nutrition since last Saturday, and we're told nutrition is the biggest factor in promoting healing.
Since we haven't been able to use his g-tube for food or medication, he has not been able to have a couple of his seizure medications that aren't available in IV form. We have seen some increase in his seizure activity, but have been able to keep decent control of it with the sedation medications.
One of our nurses calls it Groundhog Day, and that's exactly what we feel like. We make a little progress and then have a setback, over and over and over again.
We are thankful though that he has made progress. It was a little over a week ago that we were preparing ourselves for the worst, and it's a miracle that he pulled through then. Now we pray, among many other things, that his lungs continue to improve, stay clear and he can be weaned off the ventilator in the next few days. We are also praying for the fever to go away, that he can fight off whatever is causing it and for the doctors to figure out a way to start feeding him again so his g-tube can heal.
Thank you to everyone who has been checking on us and sending warm thoughts. Sorry for the lack of updates and as always, we are so thankful for your relentless prayers.

Tuesday, June 12, 2012

Logan update... Better Each Day

We are praising God big time over here. Logan has made so much progress over the last couple days, and we are very encouraged!

He is down to one blood pressure medicine, and a very small dose of it. He seems to be responding well to the antibiotics, as the fever has stayed away for a couple days, the swelling has gone way down and his red, rashy skin is looking SO much better. He also had some moments today when he tried to wake up a little, which is a good sign. He is still on some pretty decent sedation meds while he is on the ventilator, but on several occasions today he moved his arms and legs, pointed his finger (his signature move these days), opened his eyes a little and even waved goodbye to his Grandmother and Aunt Lacie tonight!

I'm trying not to get ahead of myself by getting too excited, but it definitely seems like he is on the right track! As the week goes on, our next hurdle is coming off sedation and lowering the ventilator.

Thank you for your relentless prayers and support. They are making this experience a little more bearable and we are so grateful.

Monday, June 11, 2012

Logan update: Improving

We are looking for any small signs of improvement, and God is answering our prayers. According to blood work from last night and this morning, his kidneys seem to be functioning better, his blood pressure has improved and the acidosis is a little better. We are so thankful for these little signs that he is headed in the right direction and pray that he will continue this way.

He is still very sick and far from being out of the woods, but we are hanging on to the little miracles. He is still very swollen and has a pretty uncomfortable looking rash from the infection. So we continue to pray like we've never prayed before that he can be comfortable and pain free, that God will continue to guide us and that our whole family will have the peace and comfort that can only come from him.

I am beginning to sound redundant about how thankful we are for every prayer you have said. But it bears repeating because the response and support we've received has overwhelmed us in the most wonderful way. You all have been the hands and feet of Jesus for us and thank you will never be enough. But, that's all I have right now. So, thank you.

I wanted to leave you with a few verses that have been shared with us. I know many of you are hurting our hurts too. These verses have helped get us through the hardest moments. I pray they help you too...

"So be strong and courageous! Do not be afraid and do not panic before them. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you."
(Deut 31:6)

"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 faint” (Isaiah 40:28-31)

And lastly, the verse I've clung to since this all started...
"Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think."
(Ephesians 3:20)

Saturday, June 9, 2012

Logan Update: Turn for the Worse

We had a very promising few days this week... The g-tube seemed to be making life much easier for our little guy. His energy level was up and we got to see his adorable personality come through as he played with the nurses and entertained us all. We got some quality cuddle time in...



We even Thundered Up at the hospital for our favorite NBA team's win in the Western Conference Finals!




On Wednesday evening, we noticed that he had begun to run a bit of a fever. By Thursday, his temp was still rising so they did another chest X-ray to see if his chest congestion and respiratory problems had turned into an infection. That didn't show much, so we continued to monitor him and prayed the fever would break. Friday brought more fever and tummy problems, so they decided to take a blood culture and start an IV to give antibiotics. Unfortunately our little guy is very difficult to stick. His veins are tiny and hard to find, so after four nurses and six attempts, they had a doctor place a central line in his neck last night and got antibiotics going.

Overnight on Friday, he took a turn for the worse as he went into toxic shock from the infection. Again, our amazing doctors and nurses were quick to act. After dozens of medications and putting him back on the SiPAP machine to help him breathe, he wasn't making enough of an improvement. He was having to work really hard to breathe and wasn't going to be able to fight this off without more help. We decided to intubate him and put him on the ventilator on Saturday afternoon. One of the tests came back, and his stomach troubles were caused by C-Diff, a gastrointestinal bacteria. The blood culture they drew is also showing some form of staph infection. They gave him a blood transfusion and plasma to improve his clotting, on top of the dozens of meds he's on to improve blood pressure, help with kidney function and correct the acidosis. As of this morning, we are seeing some encouraging signs of improvement, but have a long road ahead.

We are in life support mode at the moment. He is extremely swollen and red from the infections. The doctors are very concerned and have told us we need to worry. For now, we're just trying to stay ahead of the problems and correct issues as they arise. We are hoping and praying we are making the right decisions for him. We are asking for God's mercy on our poor baby, that he will not suffer and have comfort and peace. We pray for His continued guidance as we face even more difficult decisions, and we say prayers of thankfulness for the wonderful moments we had with him this week. From the bottom of our hearts, thank you for praying with us.


Saturday, June 2, 2012

Ups & Downs

I have tried my best to keep things positive on the blog - and in life, I guess. I don't mean surfacey and fake. I just don't see a reason to be doom and gloom all the time. I genuinely do feel the hope and peace I have described before, but sometimes the reality of the situation sets in. This journey has been very difficult and trying. We have had so many wonderful moments, with a new found ability to focus on the blessings in our lives, but just as often have had dark, sad moments. So, here's your little fair warning for the not-so-positive nature of this post. I'm striving to chronicle this experience - good, bad and ugly.

This stay in the hospital has been very emotional. We were so hopeful for an uneventful procedure to place the gastronomy tube and fundo wrap on his stomach (to prevent vomiting and reflux). And while the procedure itself went very well, our sweet boy has struggled in the breathing department. We knew he was having difficulty swallowing before the procedure, and that was actually a major factor in the decision to go ahead with the port. This difficulty swallowing and clearing his airway has resulted in some fluid and congestion on his lungs. Since Thursday, we have tried chest PT, breathing treatments, diuretics and suction to help him clear the gunk from his lungs. Nothing was helping enough, so today they started BiPAP and a vibrating vest to try to help force air into his lungs and break up the congestion. On top of the respiratory troubles, the little stinker has decided he'd rather not sleep. Really, I think he'd love to sleep, just can't seem to get comfortable enough to stay asleep very long.

Given everything we've been through and dealt with so far, I know this setback doesn't seem like much. It may be extra emotional because now we have a diagnosis. Now we know that many of the problems he has won't get better, they'll only get worse. We have had very difficult conversations with our doctors this time around - talking about things like how his illness will progress, what it will look like at the end and decisions we may have to make when we get to that point. We are so thankful to have had amazing care throughout this process. Our doctors and nurses have truly been a Godsend. They have been candid and honest with us, while being very compassionate and empathetic, and we will be forever grateful for the care they have provided. Nevertheless, the subject matter is something that I prayed I would never have to discuss.

The last couple days have been especially tearful for me. I'm not ready to see him suffer. I'm not ready for one complication after another. We need more time to enjoy our boy and his precious spirit. I have full faith that he will continue to get stronger, his lungs will clear up and his breathing will improve; and it will happen in the perfect time, not my time.

Wednesday, May 30, 2012

Promises

Tragedy in life often gives us perspective and helps us realize what is truly important. This is definitely true for our family and what we've been through the last few months. I am confident that difficult times, trials, whatever you want to call them, are God's way of teaching lessons in life -- whether we want to learn them or not.

One verse that God has used to reiterate this for us is Romans 5:3-5. When the boys were born, Jeff and I struggled a lot those first few weeks. We had reached a level of exhaustion we'd never known before and felt completely and totally inadequate at caring for those two little people. I still have an email in my inbox that Jeff sent when they were about a week old. He'd had a quiet time that morning, and read Romans 5. He came across this verse and sent it to me, as encouragement that what we were going through was not in vain. God was going to use it to build us up, and God used Jeff to deliver a message I desperately needed at the time. I love when He does that. I have since re-read the email from that day at least a dozen times, and the words are even more fitting for our life now than they were then.

We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.  Romans 5:3-5

Many times I roll my eyes and scoff at verses like this from the Bible. I think, "Thanks a lot, God, but I'd rather not. I'd like to learn my lessons a different way, please." Even last week at church, when they were previewing the upcoming series, titled Perspective, I laughed a little. Next week's message is called Joyful, No Matter What. Talk about timing, huh? I guess because I know all too well that it's true, but in no way does that make it easier to practice. Being joyful in a time like this sounds like a bit of a stretch, but I know that God uses these situations to make us better, bring us closer to Him and to teach us to rely on Him for what we need. And that's perspective I can always use.

In an effort to try not to lose this perspective, here are a few things I am promising myself and my family...
* Focus on what matters, and forget about what doesn't.
I have always struggled with seeking the approval of others. I would wonder what people might think if I did this or said that, if my house wasn't clean or my clothes weren't just so. While I still have to remind myself often that other people's opinions are not what matters, I feel that I have made great strides. I know that God's approval is all I need to seek; I have to focus on what He says about me and claim those truths for my life. I don't have the time or energy to spend thinking about what others might think. Even when I do let my mind go there sometimes, something else will quickly take my attention. I think this is God's way of taking a lot of this away for me.
* Say the nice things you're thinking.
This goes back to the first one a little, but it deserves it's own bullet point. I sometimes avoid saying things to people - nice things - and I really don't know why. In part, probably, because I'm afraid of what they might think. It will look like I'm a Facebook stalker if I comment on this picture, or I never talk to this person, so how will it look if I comment. Or in person, I'll think someone's outfit is cute or their hair looks good, but I won't speak up. I've realized that is just silly. These are shallow examples, I know, but I'm going to start somewhere. The outpouring of support we have received in the form of Facebook comments and messages, blog comments, texts, emails, cards and so much more has been exceptional. We have heard from people we don't even know, people we haven't spoken to in years and our closest friends. Each message, comment and kind word has been so touching, I am inspired to pass along a small portion of that in any way I can.
* Take more pictures.
I haven't done a great job at this yet, but I intend to do better. I did get a family picture session scheduled quickly after leaving the hospital last time, and I am so happy I did. Laura Eckel took some beautiful photos of our family that I know we will treasure always. We have received offers from other photographers to do the same, and I am looking forward to taking them up on it. It is tough to get the camera out when our hands seem to be full all the time, so the iPhone pics will have to do as well.

I'll leave you with a few of Laura's photos of us...



Thursday, May 17, 2012

Our Little Logan: Diagnosis

We got results yesterday from the DNA test we’ve been waiting on. Unfortunately, our fears were confirmed. Logan has a condition known as Alpers Syndrome. This is what our doctors had tried to prepare us for, so we were not completely shocked or surprised at this news.
Here is the brief rundown about what Alpers is and how it occurs from www.alpersawareness.org, a website we’ve found to be very helpful…

Alpers Syndrome is an inherited genetic illness that affects the production of energy on a cellular level. Alpers is one of many mitochondrial illnesses and can be diagnosed with a DNA test of the POLG gene. Parents of children with Alpers do not develop the illness because they carry a dominant, healthy POLG gene. However, they also possess a mutation of the gene which can be unknowingly passed on to their child. Alpers occurs only in children who receive the recessive gene from both parents. For parents who both have the recessive gene, there is a 1 in 4 chance of a child having Alpers. Sadly, there is currently no treatment or cure. Alpers has a frequency of about 1 in every 50,000 live births. As many as 1 in 110 individuals may be carriers of the Alpers gene. Many affected children die before an accurate diagnosis is made, so the true frequency remains an estimate.

There are 3 classic symptoms:
·         Seizures that are very difficult to treat
·         Loss of developmental milestones
·         Liver disease

Children develop normally for a period of time with 80% developing symptoms within the first two years of life. Although liver disease is often unnoticeable in the early stages of the disease, it may appear at any time as acute liver failure. During the course of the illness, the amount of mitochondrial DNA in the cell (its “powerhouse”) falls below a critical threshold of about 35% of normal. When this happens the mitochondria become sick and begin to misfire, severely affecting the body’s organ systems by denying them the energy needed to function properly. This leads to mental deterioration and liver failure. 

Since this is a degenerative condition and transplant is not an option, our biggest concern is Logan’s liver and how it is functioning. We will be following up with the Pediatric Gastroenterologist that saw Logan in the hospital to closely monitor his liver function. This should give us a better idea of prognosis and how much more time we might expect to have with our sweet boy. We will also meet with a Geneticist to go through some genetic counseling and to do some tests on Griffin, Jeff and me.

From a treatment standpoint, we are still working to find the best combinations of medications to control the seizures, while minimizing the vomiting and upset stomach he’s been struggling with. Since his intake of food and fluid is continually decreasing (and it’s easy to understand why, given the previous statement), we are looking into having a feeding port put in. This way we will know he is getting the nutrition and calories he needs, and his quality of life will improve if we don’t have to continue torturing the poor thing with medications that make him sick.

In the meantime, we are doing everything we can to stay positive and enjoy the time we have together. There are so many little blessings we have experienced on this journey, and our mission is to focus on those. While it’s not always easy, I refuse to waste any time or energy on being sad and depressed. God has given me an unexplainable peace about our situation. He has provided a comfort for me that has allowed me not to wonder why or question Him. Don’t get me wrong… this sucks, and I wish more than anything that He would take it away, because I know He can. But he may not, and somehow I’m ok with that. We will make it through this, like many families have before us. We will come out better for it, too. I know my sweet boy was not created for this world. He came into it to bring great joy to me, his dad, his brother and anyone else he came in contact with, and, I believe, to allow us to witness to others that God’s plan is bigger than any of us.

We are so thankful for every prayer, text, card, Facebook message, prayer list, meal and kind thought from all of you. I’ve said it before, but the community around us has been the most powerful thing I have ever witnessed. We are strengthened daily by you all and will never be able to say thank you enough.

We hated to use such an impersonal means of communication to spread such heavy news, but sharing the whole story over and over would be too time-consuming and emotionally draining. Please don’t hesitate to reach out if you have questions or thoughts that I didn’t cover here. We are more than happy to talk about it and answer any questions.

All our love…
Karlee, Jeff, Griffin and our little Logan

Monday, May 14, 2012

Logan update: Home Sweet Home

I fully intended to be better about updating you all on Logan's progress, but as you can imagine, life is a little more complicated than before. Free time is hard to come by. I do want to be sure our friends and family have updates though, because you all have been such an amazing support system for us. I know there are so many people concerned about our little one and praying fervently for him.Last I updated we were still in the PICU and slowly lowering the Versed drip. Thankfully, that went well and our little fighter improved each day. We had a bit of a rough week with many ups and downs - some vomiting, difficulty keeping his temp up and quite a bit of agitation and irritability. But, the seizure activity progressively improved, and we were able to move out of ICU to the floor on Monday, April 23rd.

The next few days were trying. He had lots of trouble sleeping in the hospital - and really, who can blame him? So by Thursday, we were pretty spent. We had had enough of hospital living, and pleaded our case for discharge to the doctors and nurses. Really the only thing they were monitoring at this point was his food and fluid intake, and we were confident that we could do that from home. Thankfully, they listened and allowed us to go home on the 26th after some consulting with the nutritionists and setting up in-home weight checks to be sure he didn't backtrack.

During the first week home, we saw improvements each day. We were able to spend lots of time together - enjoying the beautiful weather, going to the Arts Festival, the park and hanging out with family. His eating and drinking wasn't improving much, but we were able to maintain his weight.

On Thursday, May 3rd, as we loaded Logan up to go to physical therapy, we looked back at him in his car seat and noticed his left cheek and left side of his mouth twitching repetitively and rhythmically. Trying not to be too alarmed, we proceeded to the Children's Center for therapy, knowing they have an excellent medical staff that knows Logan and could provide some more insight on whether or not this was something to be concerned about. They decided to forgo therapy for the day and sent us on to our neurologist's office. On their recommendation, we tried another medication to get the twitching to stop. Unfortunately, that was unsuccessful. We went back on Friday to get a different prescription. Thankfully, Logan responded really well to it over the weekend and we were pleasantly surprised with how few side effects he had.

Last week was full of follow-up doctors appointments and therapy appointments, which kept us all pretty busy while we awaited results from the genetics tests. We were expecting to hear something from the lab by Friday, and unfortunately Friday came and went with no word from them. This didn't come as a huge surprise to Jeff and me, but was still discouraging. As of today, we still have not heard about any results. We were, however, able to enjoy a fun-filled weekend celebrating our cousin's birthday and our moms, Gigi, and Grandmother.

While every day seems different with this new perspective on life, I have to say that Mother's Day was especially sweet. I was able to reflect on what a powerful calling God has for me in being mommy to these two boys. I am so insanely blessed by them and the joy they bring to my life. I can only hope and pray that they come to know how deep and pure my love for them is, and that the love I have for them is only a fraction of the love God has for them. I won't lie and say that I spend all day with such peace and clarity. Most of my time is spent in a state of some sort of stress, anxiety, worry, exhaustion or frustration - about the fact that Logan won't eat, or his meds make him throw up, or he can't sit up by himself for more than 5 minutes, or he cries out of frustration, or that Griffin is becoming a professional at testing boundaries. I do my best though, to make a point to thank God for the blessings in the trial - the smiles and laughter only Griffin can get out of his brother, the willingness of both boys to give as many hugs, kisses and snuggles as we can stand, the rich conversation and strengthened relationship with my husband and the amazing community God has surrounded us with. We are so blessed, even though I don't always see it.

Next time I post, I hope to have results from our tests to share with you all. Thank you again - from the bottoms of our hearts - for all the love and support!

Sunday, April 15, 2012

Our Little Logan: Back in the hospital

Again, in an effort to have a record of Logan's health struggles and to provide more detailed information for those who are interested, here is a recap of where we've been since my last blog post...
A rare, but very welcome smile from our sweet boy, who has very little to smile about. He is such a trooper!

Monday, March 26 - After 18 days in the hospital, we were released from the hospital and headed to the Children's Center in Bethany for inpatient therapy. Logan’s last week in the hospital was spent out of ICU, in a regular room, where we worked on getting him back on as normal a routine as possible – eating, drinking, taking meds by mouth and sleeping through the night. We had to fight quite a bit of agitation as he came off of so many drugs, but he did beautifully – all things considered.

Our week in therapy started off a little rough. Logan was very sleepy and uninterested in participating in his therapy sessions. As the week went on, we saw progress each day. He was taking two naps a day, sleeping through the night and eating like a champ. He made great strides in therapy as well. There was no therapy on Saturday afternoon or Sunday, so we got to take him home during the day to be all together again, and to give us a test-run of what life would look like. By Sunday evening, we were convinced he was ready to come home.
Monday, April 3 - We got to bring Logan home! He still had a way to go to get back to where he was developmentally. He was sitting up on his own really well; using both arms and hands to play; had started to bear weight through his arms to push up and roll over; and would tolerate standing assisted for a minute or two. We were very encouraged by his progress and were so thankful to see some of his personality coming back as well. After three and a half weeks of juggling two kids in two places, Jeff and I were completely exhausted. So we were thrilled to be under one roof again!
Without the tremendous support from our families and friends bringing meals, keeping Griffin, sitting with Logan and countless other acts of love, we would not have made it through that episode; and we are eternally grateful! Our week at home went very well. Logan seemed to be better each day, and we were feeling like we could actually handle what we were facing.
Then the other shoe dropped on Friday, April 6 around 8 am. We had finished breakfast with both boys, and I noticed Logan’s left side twitching again. We called our neurologist’s office and paged the doctor, but 15 minutes later, the seizing had intensified and we were sure it was the same thing we had seen exactly four weeks earlier. We loaded him into the car and headed for the Integris campus. We ended up in our neurologist’s waiting room right as the office was opening, and they were so wonderful and helpful (even though we had clearly violated the code of conduct for doctor’s offices). They sent us back to the ER to get medication to try to stop the seizures. After several drugs failed to do the job, we were admitted to PICU again to continue meds to get the seizing under control. We were greeted by the doctors and nurses with open arms, and were relieved to see familiar faces who know us well.
Saturday, April 7 - Thankfully, they were able to get Logan’s seizing under control overnight without having to completely sedate him. They did an MRI in the morning, and preliminary results didn't show much difference from the two he had during our last stay. Discouraged by what they were seeing, the doctors ordered lots of labs to test for a number of disorders that might be the cause. By this point, we were getting the message that we were back to the drawing board when it came to determining the cause of the seizures.
Monday, April 9 - The neurologist confirmed that their original diagnosis of ADEM (acute disseminated encephelomyelitis) was likely not the cause of his seizures after all. Based on the MRI showing little change and his liver enzymes remaining in the abnormal range (which has been the case since we first came to the hospital), their next step was to send off tests for genetic mutations that could be the explanation for his illness. We had heard that many of these tests could take up to six weeks to get results, but they were isolating some specific tests to be run first so we were hopeful for more like a two week turnaround. We are purposefully not going to mention any specifics here, to prevent the Google frenzy that would inevitably ensue!
The rest of the week was relatively uneventful. Logan didn't have much, if any, interest in eating or drinking. So they put in a feeding tube to ensure he didn't get set back even further by not getting proper nourishment. Since the seizures had been under control for a week, they also slowly lowered his Versed drip, which keeps him pretty sleepy and out of it. By Friday, April 13, they were comfortable turning off the Versed completely to see if we could get him a little more alert. As he did so, he continually got more and more uncomfortable and agitated, and Jeff and I worried that something wasn't right. We also found out on Friday that the test results we're waiting for will take four weeks, at a minimum. Needless to say, Friday was a frustrating day.

We ended up putting him back on the Versed and constant EEG monitoring on Friday evening. As of today (Sunday), the EEG has shown no seizure activity. Big praise! The plan for now is to come off the Versed even more slowly, and they began reducing that concentration this morning. Our prayer is that the agitation and irritability will be minimal, and he will be comfortable and pain free. If we can get him off the Versed so he's more alert and eating and drinking better, they want to monitor him here for at least 4-5 days. The goal is to go home with the seizures managed on medications that won't make his liver worse, and await test results, so we know how to proceed.

As you can imagine, the waiting is the most difficult part of this process, so we continually pray for patience. We are doing our best to stay focused on the little goals and milestones he needs to achieve, and not dwell on the fear of the future. These are easy things to say, but not at all easy to accomplish. Each moment presents new worries, fears and anxiety about what we might be facing, and while I can't speak for Jeff, fighting off these thoughts has been very difficult for me.

Again, huge thanks to every one of you for your relentless prayers, words of encouragement, cards, notes, meals and love. We are so very thankful for you!

Sunday, March 11, 2012

Our little Logan

In an effort to provide as much information as possible to those who are praying for us, we wanted to try to recap the whirlwind we've had with our precious boy so far. I apologize in advance for not being able to summarize the emotions we were feeling throughout this time. I simply wanted to get the medical side of things out there for those of you who have been wondering.

2:30 am Friday, March 10 - I go into the boys' room (for the third or fourth time) to try to quiet Griffin back to sleep. I check on Logan too and notice a twitching in his leg. I called Jeff in to look at it, we picked him up and noticed his whole left side seemed to be convulsing. We quickly decide to take him to the ER.

The ER doctor did bloodwork, started a sedative medication and ordered a CT scan. The bloodwork came back showing some abnormality in his liver, but little else, and the CT scan appeared normal. So, after consulting with the pediatric hospitalist and pediatric neurologist, they decide to admit him for further monitoring and tests.

6:00 am Friday, March 9 - We get admitted to the pediatric unit. Logan is very mellow from the drugs he got in the ER, but alert and aware, as he has been the whole time. Aside from the constant convulsing on his left side, nothing appears to be wrong. Later that morning, they did an EEG to see what was happening in his brain, and we got another dose of the sedative to help him get a little sleep while we wait for the neurologist. He was able to sleep for a couple hours, but the convulsing only subsided, never stopped. By noon, he was back to twitching on his whole left side. Two more doses of the sedative and a loading dose of an anti-convulsant had little to no effect.

5:00 pm Friday, March 9 - The neurologist gets to the room to see Logan after checking the EEG results. He is very concerned by what he sees, and quickly orders another dose of the anti-convulsant. He confirms that there has, in fact, been ongoing seizure activity in the area of his brain that controls his left side. After a short consultation with a few other specialists, he returns to tell us that he recommends taking him to the ICU so they can put him under, try stronger medications and get a spinal tap. He prepares us for a long journey ahead trying to figure out what is causing the seizures, mainly because of the unusual presentation.

8:30 pm Friday, March 9 - We are able to see Logan in ICU. He is almost completely sedated, intubated and getting hooked up to the EEG again. We try to settle in and rest after the longest day of our lives.

Saturday morning, March 10 - Our ICU doctor reports that the initial tests on the spinal fluid showed high protein levels, which is an indicator that infection is present. An MRI is scheduled for the morning so they can get a more complete picture of what's going on in his brain.

Saturday afternoon, March 10 - Initial review of the MRI showed some inflammation of the brain in the area that controls his left side. The neuro explains that the combination of medications Logan is on has controlled the seizure activity in his brain, which is positive. The MRI results, combined with the protein levels in his spinal fluid and the elevated liver enzymes in his blood all seem to point to some kind of infection. They begin an anti-viral to fight it off, in case that is what we're facing. The not-so-positive news is that we really won't know anything more until the cultures from the spinal tap come back - which will be Tuesday or Wednesday. He decides to keep the medication as it is to keep Logan sedated and continue to monitor with the EEG.

Sunday, March 11 - After an uneventful night, we continue to wait. Nothing new to report really... the EEG overnight showed the seizure activity is still under control and his liver enzyme numbers are continually decreasing. Our neurologist said that he is encouraged enough by the way the medication is controlling the seizures that he wants to try to start backing off one of the sedatives on Monday and see if the seizures remain at bay.

So here we sit. Waiting for test results, waiting to change medication, waiting for another doctor to review the MRI, and most of all... waiting to get our little boy back.

We are so thankful for all of you who have prayed, asked your friends/families/churches to pray, and sent words of encouragement. We have received and felt each and every one, and we rest in the hope of an awesome and amazingly powerful God to bring us out of this.

All our love,
Karlee, Jeff, Griffin and little Logan

Pray

We've all heard people say, "All we can do is pray." I've always secretly thought that was weak. No it's not, there has to be something more that can be done. Of course pray about it, but also make it happen, don't just wait for it to happen. Until the moment came when literally all I can do is pray.My baby lays in an ICU bed beside me and there is not one thing I can do to help him. Except pray. And while sometimes it may feel like nothing, it is most certainly not nothing.Prayer is so amazingly powerful, and the God to whom I pray is even more powerful. I have seen and heard of Him performing miracles time and time again, many of them more astounding that what I am asking for. So while this mountain may feel impossible to move, I must constantly remind myself that with God, it isn't. Faith, trust and confidence in Him, I have. What I do not have is the ability to comprehend what is happening, nor the power to do anything about it.So, all I can do is pray. And ask every person I know to do the same. Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. ~ Ephesians 3:20

Thursday, January 19, 2012

Long overdue

I have to apologize to all four of you who read this blog... I have been terribly neglectful, but I have to admit I am only a little bit sorry. A lot has happened since I last posted... new job for me, finishing up the remodel, the holidays, but most of all, a lot of time with the family. And that is why I'm not beating myself up too much. I had hoped this blog would help chronicle our lives, and I think a brief pause from the blog is telling of what has been going on with us.

For now, I think I'll try to recap the last two months in photos... and I'll get back on the blogging train, I promise.

My sweet, preppy boys on Thanksgiving...


Visiting Santa...

 I was experimenting with the camera a little... they really liked the tree, and did surprisingly well with it!

Christmas morning... (with curtains!)

All the sisters and little ones on Christmas day... so much fun!

You got a little sneak peek at some of the finished house. I haven't taken any official 'after' photos, but I assure you it is on the list of to-do's!