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!