Sunday, October 23, 2011

Arrrg, Matey!

Levi's trip to the ophthalmologist earned him a new piece of eye wear. Yes, an eye patch. He screamed and cried straight for the first 15 mins I had him wear it. Then, he accepted that it was yet another thing he was just going to have to learn to live with. I wanted to cry with him, but I held it back. Really? Another "therapy" we are going to have to incorporate into our day.

The goal is to have him wear it 4 hours a day. The idea is that by patching the strong eye, the brain has to rely solely on the weak eye, thus putting more energy into making it be the best it can be. If not patched, the brain will slowly turn off the under-performing eye, since it doesn't want to bother sending so much energy to an organ that is not pulling it's weight. At least that's my simple explanation.

While he does great at keeping it on, he doesn't do well when he has is on. It was shocking to see how he is able to see when he has it on, or rather how he can't see. Since he can't see, he pretty much checks out on most interactions and gives up on walking or wanting to go anywhere. Instead he whines and wants to be held. Holding him is becoming more of a challenge, since his 34 pounds on top of my growing belly just doesn't feel great for long. To give him credit, I guess I would be the same way if somebody covered up the eye that was providing me vision and expected me to go on with my daily business. I do have a lot of hope for recovery, after all the brain and the eye are some of the most amazing organs and they have profound capabilities, and we have an amazing God and Healer behind it all, so we have plenty to hope for.

Dan and I are both frustrated that no sort of PT or OT has started, since we are still waiting for all the paperwork to go through. We decided today to have him start walking without his right foot brace, and that actually seemed to work wonderfully. Since he was able to bend at least one ankle he was able to scoot around on his favorite bike, which was SO fun to see. He also has taken more independent steps (when forced to), he still majorly freaks out, but when he does do it, he seems significantly stronger and stable! Yeah! One thing the doc talked about is getting botox injections in his left foot to loosen the muscles that are distorting his calf/foot. This will ideally be done at his next MRI since he will be sedated. The MRI is scheduled for the 31st, but I am still trying to coordinate the botox, which I feel like is a long shot to get coordinated beforehand. I am still hoping that something will work out. This is something to be praying for, especially since his left foot causes him a lot of discomfort and difficulty, and makes walking even more of a challenge. I feel like if he can get that foot flat, his walking would take off.

We are finally feeling a bit settled back home. The welcome home balloons met their demise today (Dan with scissors) as we tried to clear out our house a little bit and most of the bags and toys from the hospital are finally put away. I just feel so tired all the time. I keep reminding myself that this would be the same whether or not Levi went through all this. After all, what pregnant mother of 2 young children wouldn't be tired? Right? Still in the back of my mind I wonder how I will do this with an infant. I try to push those fears aside, hoping that things will be better in 4 months, but they keep cropping up.

I am also getting used to curious people checking out Levi. I know I would be curious too and would wonder what was going on with this little pirate-meets Forest Gump boy. Maybe it's just the protective mother in me that wants to protect him from judgement, or maybe it's the pride and insecurity in me that doesn't want to have a son that is not like the rest. Either way, it's an adjustment.

Photos: (Top) Levi during his initial cry fest after we started patching. Yes, his mouth is full of pumpkin bread. (Middle) Loving his new Elmo costume. My $3 score on craigslist. (Bottom) Loving playing on the tractor with all his friends, a big hit at our venture to Irvine Park Railroad.

Sunday, October 16, 2011

Stuck in the Middle

Home is GREAT! Yes, Levi is a handful, but as we have settled in a bit more, we realize even more how completely wonderful home is.

Dan and I had our first chance to get away on a date on Sat night and it was such a nice time to be on the other side of this hospitaliztion and looking forward to starting back into life again. During our time together, I realized that many of the ideas and hopes that we kept talking about started out with, "When Levi can walk again . . . " or , "When things are more stable . . ." and then I began to realize that I was in some ways putting my life on hold. Waiting for when things are better and Levi is himself again. So Dan and I decided to make decisions to live NOW, not waiting for things to change or things to get easier. Yes, I do hope they get easier and Levi walks soon, but it could be longer than I anticipate and I would be bummed to look back and have wasted that time while our lives were stuck between the nightmare we just went through and the "normal" live we hope to have again. Perhaps we'll need to open our eyes and accept our current life as our new normal and not think about the better times ahead, rather focus on the many blessings we have today. Ya, I think so.

Levi continues to be better and stronger and has a LOT to say. Wow, the little guy loves attention and he knows how to get it. He finds that if repeating "Mom" over and over again doesn't work that grabbing my face and turning it towards him usually does. While I love to see his persistence, this does get a little tiring (okay, a lot tiring), especially since he desires my full attention pretty much every time I try to have a conversation with another adult. He seems to even kick it up a notch at Doctor appointments, they are the worst.

We had his OT/PT evaluation last week and they anticipate having him in therapy twice a week for an hour each visit. In my very non professional opinion this is not enough, so I will be involving his rehab docs to make sure he is getting everything he needs to get better. In addition, he has to wait a couple more weeks until it starts to wait for all the paperwork to go through. Things don't happen fast in a hospital, but wow, things happen even slower outside. Patience for getting Levi the things he needs to improve isn't something I have a lot of.

I have found that I am not able to give him much focused attention to specifically work on the areas of weakness (that we do in therapy) when we are at home together. Maybe since this week has a little less going one we'll be able to work on his therapy stuff. I might have to start incorporating more caffeine in my life, that may help too.

This week is a very light week for us, having only 2 appointments. One being the eye doc that was going to perform the surgery to open his eye. This will be her first evaluation of Levi since his eye opened and I am very interested to see what she has to say. His eye is still not 100% open, so who knows what it will do long term. Thankfully there is no rush to perform any surgery since he is able to open it enough to see. At this point any procedure would be cosmetic, as far as I am told.

Thankfully, Levi is tolerating his ankle and foot braces, aka his "boots" much better, as he realizes that he can walk much better with them on. The trouble is that they don't have any give in the ankles which make it hard for him to get down once he is up and standing. While he has shown the ability to walk independently, he hasn't been able to muster up the courage. The only time he will even try is when he is forced, and it is a very sad thing to watch, he just gets so upset and anxious.

Looking forward to another Monday and starting off another week here together! It has been so fun to meet some of you and I am so thankful when people say hi and let us know that hey have been following Levi. We are planning to have a celebration gathering, inviting everybody that has followed Levi and supported us along the way. More info to follow.


Photos: (Top) A good old tractor ride at Sears, our Microwave broke this week! (Bottom) Kade's first day of Preschool! Mission Hills Preschool has been so great to us, Kade loves it.

Monday, October 10, 2011

Set Free

As we drove away from the hospital, Levi said a couple of things that were just so darn cute. First, as we pulled out of the driveway he said, "Weeee!". Then, as we were on our way we were talking about going to his grandma's and grandpa's house and he repeatedly said, "I'm ready." He had been asking to go there for over a week. The little guy got all tuckered out with excitement and didn't make it to Ma and Pa's house awake! It was pretty sweet that he wanted to read his huge Richard Scary book, as was his old habit in the car. (Note the awesome usage of his left hand!)

So we blasted through the weekend with a little bit of relaxation and a lot bit of friends and family welcoming us home. The first few nights sleeping have gone quite well. He usually only gets up once, but settles without any snacks. I do miss the endless supply of hospital bed sheets and the "Soiled Laundry" bin that magically takes away soiled sheets. We are still working on a strategy for keeping him from overflowing his diaper through the night, we have been changing it at his wakings, but more than that would require an extra waking on my or Dan's part and at this point, I'd rather do the laundry.

Monday: What a glorious day, it felt so, so great to be at home with both the boys having them play together while I made a very yummy fall breakfast (which they both refused to eat).

Levi has his PT/OT evaluation on Wed am and after that we will know what his weekly schedule will be. I am eager to know that so I can start planning our life around it.

Levi's hand is doing absolutely amazing, he is using it without being forced to and it is open
and loose most of the time. Prior to his recovery it was clenched closed and it was hard for him to open it. He continues to walk with assistance and was eager to do that today, especially when he got to show off for a neighborhood friend. He was so proud of himself, it was pretty sweet. His left foot turns in when he walks, which makes walking more of challenge, this will likely be a major focus in PT. You can see how cramped up his foot is in this photo. The braces he has really help him get his foot flat, making walking a little less painful.

Today, while they were taking a bath together, Kade yells out at me, "Mom, Levi's eye is open." Ah, ya Kade. Old news. However, maybe he meant more open than before. It's hard to say, if it is improving, but we still need a little more progress on the eye to have it be back to normal.

Off to get rested up for another adventure with the boys tomorrow!


Thursday, October 6, 2011

On the Eve of Eternity

Life is so very short, yet why does two months in a single place seem like an eternity. As I strolled the halls tonight for the umpteenth time I became some what reminiscent. (Don't get me wrong, I am soooooooooooooooooooooo ready to be outta here. There is nothing new to discover in these halls.) The emotional and spiritual journey that the Lord has brought us on is so rich and so good. It has been a goal of mine to not miss out on the meaning behind the experience we are on. I know that there is still much that we will go through and learn as we transition home and rediscover our family unit, but I am going to attempt to reflect on a few things that have stuck with me over these last few months.

Family, friends and community are a gift from God. The people God has placed in our lives have allowed us to thrive in a survival situation. In the first week both my family and Kara's surrounded us with support as we prepared for our darkest hour and where there to celebrate with us as we got word of the successful surgery. They gave us the freedom to support Levi and they gave Kade the love and support he needed. In the coming weeks, turned into months, many people the we are close to and whom we have never met blessed us with love, prayers, gifts, support, meals and visits, all of which made the routine of our life work.

I really love my wife. She is amazing. Her full time job the past two months has been to be here for Levi. With our sleeping shifts she would often put in 32 hours straight before getting some relief, only to leave here and go home for the night to be with another boy who loves and needs his mommy. Then she would get up the next morning and be back here to do another 32 hour shift. She really is the one that held this whole thing together. To use a quote from Lost, Kara is our "constant". I love this girl so much and am ready to be with her for more then 2 hours, which is a high estimate of the average amount of time we have been in the same place on a daily basis over the last 2 months. All this while carrying Ryska boy #3.

I love my boys. Both of these guys, Kade and Levi, are the greatest thing to ever happen to me. How can someones heart love someone in such a way. This is the mystery of being a parent, because when #3 comes a new level of love will emerge and be just as strong as what I have for my boys. Both these boys are champions. Levi has gotten a lot of publicity, as he rightly deserves, but Kade has been a constant joy for Kara and I (minus the nights he just want to continue to spend time with us way past his bedtime, but even in this my heart is soft towards him because he loves his mom and dad and continually reminds us of God's goodness and the Big God that we serve). He is very much so ready to have his family home.

Our story in not unique. There are dozens of families that we have met while roaming the halls. Many of which are in a much more challenging situation. In learning their stories we recognize how very richly blessed we are. Ours is a happy ending, one of hope and promise. It hurts my heart knowing there are those whom we have met that do not have the hope we are able to have. They are still living in uncertainty. Truth be told, we do not know what the future hold for Levi. In the near term he has a lot of work to get his body strong and walking again. There is still a chance the cancer can come back. There are many more unknowns about his future, yet still ours is a happy ending.

As I said on the eve of his surgery, or a few days before, we hope in the One who gives us reason to hope, for Levi's future is in His hands. Levi's life is not mine to keep. He has been gifted to me by our Creator and I have been entrusted with the joy and duty of being his father. When face with the unknown of what is to come we have two choices: live in fear, live in peace and joy. We fear what we can not control. Yet when we surrender our fears to the Lord, trust that he will take care of us, and meet our needs despite what happens in life, we can live on in peace and joy. That is the joy that we can have as Christians, followers of Christ. It is not a crutch, not ignoring reality. It is humbly acknowledging that we are not the god of our lives, there is a greater one who holds our lives in His hands and has a purpose for each of us. Living life surrendered to His will allows us to be free of the fears that come from that which we cannot control. I do not claim that I have attained such freedom, for I still have many fears, but this experience has shown me more of the manner in which the Lords desires me to be living my life on a day to day, moment by moment basis.

I hope you don't mind me sharing some thoughts. For those who do not know me, it is in writing that I process my thoughts and I thank the many who have allowed Kara and I to process with you. We will continue to share our journey as tomorrow is only the beginning of a new chapter to the story of Levi's life.

Monday, October 3, 2011

Are we really almost home?

It seems like when you were a kid and Christmas seemed so, so far away and then POP, it was Christmas Eve! These next few days are our going home eve and they feel just as packed with excitement and stress as the few days before Christmas.

This week feels like a breeze since we have been at this so long, we have got it down. It doesn't seem as hard as it did in the first month and since we have had such amazing support we have adapted to our new life and hard as may be, it is working. Don't get me wrong, I am still counting down the minutes til I can go to bed tonight, but I feel a sense of stability.

What makes me feel unstable? Friday. And each day thereafter. Coming home on a day pass, on Sunday was something we looked forward to it, but I gotta say, it was a rough day. I was feeling ill with pregnancy issues and our boys were both just so full of energy and excitement and needs, oh so many needs. Honestly, at the end of the day on Sunday, I wanted to run and hide and come back when this is over.

Thankfully today, Monday I ended the day feeling so loved, so supported that I feel like this next phase isn't going to collapse me. My superhero mom relieved me early at the hospital while one of my dearest college friends drove 2 hours to visit and bring delicious food (made with love). Then to top it off, when I got home, it was sparkling clean since Kade's sunday school teachers came to clean it. Wow, as I write this I am overwhelmed with gratitude for the people I have in my life. Why am I so blessed?

I do have to say that Kade gave me the best reminder tonight. I was sitting eating dinner with him and I asked him what he thought about Levi coming home on Friday. He said, "Good." I asked if he thought it would be a lot of work helping Levi and he said very confidently as he shot is finger up in the air, pointing up to the sky, "God will help". Oh, thank you Kade for reminding me of how I will get through this and where my help comes from.

Last night, Levi slept through the night for the first time! It was awesome, especially since I was on the night shift. He usually wakes up between 2-4 am for snack and then goes back to sleep, but he finally made it through. Nice!

His therapy has been very up and down, he'll have an amazing session then he'll have a session where he breaks down and cries at just about everything. One of the therapists has suggested that it may be him just getting
to the frustration point that he isn't able to do what his mind tells him he can do but his body tells him he can't. He does continue to get stronger each day and has gotten a bit more accepting of his ankle and foot braces, which help him a lot with walking. He struggles with anxiety, and working past it to do the things that his body is relearning. He just shakes and cries with fear before he'll try to do a new skill. Today, we worked on stairs and worked through his fear, but it took a lot of hugs and reassuring. That's the sweetest thing, his therapist figured out that if he is refusing to do something, she can ask him if he wants a hug and he usually says yes and then after the hug he usually has the courage to try it. That's my Levi.

Top photo: Levi being a goof-ball in the cafeteria for breakfast. Middle photo: Puss in Boots came to visit, it was a fun to change up our afternoon a bit. Bottom Photo: Levi with his physical therapist Wendy, we will miss her, he loves her! And so do we. He just scored a "rest" in this photo and like usual he is cracking his therapist up.