Friday, December 30, 2011

A little bump in the road

Over the last few days we have learned the reality how different it is caring for a child with Levi's needs. He's now looking so "normal" it's easy to forget how different he is on the inside.

For starters we learned just how hard it is to break the routines of life and travel. Trying to stay on top of his meds while on the road and out of our normal routine was a challenge that took me by surprise. We didn't realize the toll that traveling can take on a family and didn't allow rest time when we got home from our Christmas excursion to Clovis and of course Levi got sick. So now I am learning that the flu, which would just be an inconvenience in a normal body is a major deal in Levi's.

He came down with what seemed to be the stomach bug on Wed evening, which Dan was fortunate enough to contract as well. Our first challenge was to figure out to to keep vital meds down his little body when it was rejecting everything else. We navigated that pretty well, or so we thought until the little guy just wasn't perking up the next day like we would have hoped. Since he does have a more complicated medical picture we couldn't take any chances and so I took him to the ER last night thinking that they would be able to make sure he was adequately hydrated and maybe to a blood test to make sure things were all in line. I should have figured out by now that things NEVER go as easy as you have it planned out in your mind when it comes to these types of things. So my quick trip to the ER turned into a night admitted to the hospital which has now turned into two nights at the hospital. His sodium/potassium levels have been all over the place over the last 24 hours, so we now hope to have those headed in the right direction at this point. Last night he got good rest with Dan at his side and we hope to be released today.

It's striking how different it is dealing with a hospitalization now verses a few months ago. This time around we have all sorts of familiar faces to run into and an unwelcome familiarity with doing life at the hospital that it almost makes it easy, annoying but easy.

I would like to mention a friends child, an 18 month old boy named Simon, who was admitted the same night as Levi, but only with a much more serious situation. He fell and hit his head while getting out of the bathtub and he developed bleeding between his brain and skull. His parents Rena and Jesse Fray had to lifeflight him to Children's for emergency surgery, by 2 of the same neurosurgeons that operated on Levi. He is in recovery, with very little known in the future. There is a lot of hope, as he's showing many good signs of brain function, but it's a long road to stability. Please keep them in prayer, as the journey they have just begun is near and dear to my heart. Here is a picture of the little guy.

Thanks so much for still tracking with us.

Love,
Kara and Fam

Tuesday, December 20, 2011

Happy Birthday Jesus

Our little Levi loves, and I mean loves Santa. Santa visited us early at a gathering and brought all the children a gift. After Levi opened his up, who did he run to to show his new prize? his dad? his mom? his brother? Nope. Santa, his new best friend. He's been lucky enough to visit with Santa twice this year and each time he ends his visit with a hug.

Along with Santa, I am glad to say that Levi has embraced the reason for the season, every time he sees anything candle related, he exclaims, "Happy Birthday, Jesus!" It usually comes out more like, "Birthday Jesus!" But none the less, he's excited about it.

Today, was the day I had been dreading . . .Levi finally figured out that he can take his patch off all by himself. And he took full advantage of it. Eventually, the little guy realized that he was fighting a losing battle and that he might as well deal with keeping it on.

I gotta admit the patching has been the hardest part of the last few weeks. He transforms or I should say regresses when he has the patch on and I don't blame him, he can barely see. It's hard because he is SO needy and whiny during this time. I have to remind myself that 2.5 year olds are hard and whiny in nature and that we'd be dealing with this anyway, but it's hard to know how to guide Levi into appropriate behavior when I know that he is deep down frustrated. It's also hard to get the hours in, last night we attempted to bring him to a Christmas gathering while wearing the patch and needless to say, it didn't work so well. If he's hard to deal with in his familiar surroundings while patching, imagine how that goes when he's not familiar with his environment.

I have been trying to embrace stay-at-home momhood and get them out to do "fun" stuff in between the other stuff that fill our week. This week, we dropped in at Legoland to take advantage of the snow and season's festivities. We had a great time, until I lost Kade. Yes, I full on lost him! Fortunately, Levi was a trooper during the 20 + minutes that me and the staff spent finding him. What a way to end my "let's be a fun mom" adventure. This photo was taken just before the incident.

I came to a moment a few weeks back on a day that my spirits were down, that I didn't feel like dealing with the cards that we were dealt and I thought I'd just surrender and accept that this part of my life wasn't going to be good and that was okay and I'd just be depressed. Ah, lame alert. I am so thankful for the message that I heard at our church a few days later about Supernatural Joy that reminded me that I had it all wrong. Instead of being subject to the ups and downs of our circumstances, we are to have joy in all circumstances. Fortunately, we are told exactly how we are able to do this because as I very clearly realized, we aren't able to do this on our own strength. Now the challenge moving forward is to keep those pesky temptations for a pity party under control by living out the lessons that I keep learning. Over and over and over. (If you are interested in the audio from the message, I attached it below.)

So, as I reflect on my past few weeks, here are my thoughts on my New Year's Resolutions:
1) Make sure I embrace my opportunity to be at home with the boys and make sure I cultivate opportunities for them to learn, grow and have FUN!
2) Daily focus on the lessons that I have learned and relearned this past year and focus on the scripture that supports them.
3) Don't lose anybody.

I hope you have the Merriest Christmas, and remember the true things of value in your lives.

Merry Christmas,
Kara



Wednesday, November 30, 2011

With Thanksgiving

I apologize, it has been too long since our last post, it's so easy to get wrapped up in the day to day things.

We had our first follow up appointment with the neurosurgeon yesterday, where we received news that his latest MRI showed NO signs of tumor regrowth. Good news! I was anticipating that news, but after you go through hearing the unthinkable once, it occurs to you that you just can't take good news or a clean report for granted. We also got a better understanding of the causes of Levi's post-surgery changes (more on those later). It was striking to see the expressions that the neurosurgeon and his nurse practitioner gave when they reviewed the films of Levi's tumor--it was quite notably a big one. And when your surgeon has performed the most removals of these types of tumors in the WORLD, it makes you realize the magnitude of what Levi was dealing with.

Some of what we got clarity on . . . Levi's tumor shared the same blood supply as the section of his brain that controls movement, the potential damage and the effect on Levi's life was worth the risk to remove the tumor in it's entirety.

We met with the opthamologist today and got more clarity on his vision. It is affected by two separate issues. First, as we have written about before is the damage to his optical nerves from the tumor compressing them, they continue to appear gray or damaged. This type of damage usually causes peripheral vision to be compromised, which is very apparent when he has his patch on and runs into all sorts of things. Very sad.

Secondly, he has a condition called Third Nerve Palsy, which was caused by the third nerve getting stretched out by the tumor, and this nerve is particularly sensitive especially during surgical procedures so it could have endured additional damage during the surgery. It is the culprit for Levi's eye not opening at first and for the poor vision he has in his left eye. The patching therapy is to encourage any improvement to the eye affected by this nerve. The nerve controls the eye opening function and movement of the eye. I learned today that Levi will have to patch for years, many years. Many people have suggested that Levi will be able to get glasses to correct his vision issues, but I received confirmation that these types of issues are not correctable by glasses.

One good reminder we got from the neurosurgeon is that Levi is still very fresh out of surgery, and it was a BIG surgery. That brings a lot of hope for continued healing and restoration of his little body.

We were so fortunate to have my family bless us with a trip to Desert Hot Springs for Thanksgiving. It was a welcome break from real life for a few days and our first time dealing with Levi's new needs in a place other than home. Besides forgetting one of his meds in the fridge and having to go back and get it, it went pretty smooth. There was also a night where one of his meds didn't work and he wet through 4 night-time diapers and clothes and drank 5-6 sippy cups of water. At least it was our last night there since I ran out of clothes for him!

One thing we are especially thankful for is Levi's blossoming personality. He is becoming a full force 2 year old. Since the pressure in his frontal lobe has been relieved he has sky rocked in other areas of growth. He has a LOT to say. And I mean a LOT. Seeing him thriving in these areas of life make all the other deficiencies easier to overlook and give us a lot to be thankful for.

Emotional ups and downs still hit me as I am adjusting to being a stay at home mom and shuttle Levi to his many appointments AND shuttle myself to my prenatal appointments. It's been hard to connect with people, cause the appointments and therapies consume so much of our time and energy. I am so thankful for the help I have from friends and family that have helped make all of these appointments a bit easier by watching Kade and/or Levi.

I feel like it might take years to process what we have just gone through. I think back to a few months ago and it seems like a lifetime ago and I think to myself, did we really just go through all that? We did and Levi has the scar to prove it.

Happy belated Thanksgiving to you all, I am so thankful that you care enough to read this,
Kara

Saturday, November 5, 2011

Ups and Downs


Lots of ups and downs this past few weeks.

We finally started OT and PT and it has been great. During his second session of PT Levi started walking!!!! It's a huge step and when I first saw him doing it, I almost couldn't believe my eyes.

I attached a video, can you tell I was happy? Kade was watching with me and he was so happy for Levi too, he ran up to him and patted him on his back, very gently. Sweet brother moment. You can see that his leg drasticlly turns in and it is caused by the tightning of some muscles which is common during the brains healing process. The botox that I have mentioned before is what has been recommended to aid in the healing and correction.

video

This past Monday he had his first follow up MRI, which we will not receive the results from until the end of on November, we are very hopeful that there will be no signs of the tumor and you are welcome to pray along with us that this will be the case.

Since he was being sedated for the MRI it made it an ideal time to get the Botox injections done, however to do this we needed additional insurance approval. For days up to the procedure I had been in communication with the doctors office as we were trying to get the approval. The morning of the procedure came and still we had no approval, but after
wrestling with the decision to call it all off and reschedule or to take my chances, I had decided to go to the scheduled appointment anyhow, hoping and praying that the approval would be received by then. I have never been very good at accepting "no" for an answer when I want the answer to be "yes", especially since I was desperate to get this done as soon as possible to help Levi's foot feel better. It was so turned in that he had to limp on the side of his foot when he didn't have his brace on. Anyhow, back to the story, I was getting him registered for the MRI and still no approval and I was contemplating proceeding anyhow even without approval, until I found out that it would be $3000 if our insuranc
e wouldn't agree to pay for it. At that point, I finally gave up and decided that it wasn't meant to be and we would figure something else out. We were continuing the admin and preparation for the anesthesia and just about 20 mins before he was to be taken into the procedure room, I received a call from the assistant I had been working with notifying me that we had APPROVAL. Whew, what a relief and what s
tress. Needless to say, it was a long day . . . .then we had to go home and go trick or treating . . . .needless to say, not the first thing on my mind.

His leg and foot have started to show good progress from the injections and over the next month the effects from it will be at their maximum, I le
arned that it takes 3-5 days for any effects to show.


I had been gearing up to go back to work next week until I was notified this week that my position at the company I had been with for nearly 8 years was no longer available due to layoffs. Bummer. Big bummer. Our family had been anticipating the return of that income and while I wasn't super thrilled about leaving the boys for 2 days/week again, our child care situation was one that made me feel secure about leaving them. When I got this news, I was instantly overwhelmed with stress over the
way this would affect our financial situation. Over the past 3 months we had been so supported by you all, that for the first time in years financial issues were not an immediate concern of ours. Now, wham! Back in the forefront of my mind. After taking a moment to process this change, I considered that maybe it is what is suppose to be, maybe God knew it was too much for us to handle right now. I have to admit, I felt as though I was barely keeping my head above water anyhow, with all the appointments and needs of our family.

We had the great fortune of having my brother and sister in law in town, with my niece and nephew. They were able to be a huge help to me during this week so that I could make it to appointments with the assistance of my mom and not having to drag along Kade. Plus, it was SO fun to be with family and get to have a change of pace.

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.

Love,
Kara

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!

Kara

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.

Love,
Kara

Wednesday, September 28, 2011

Breaking Point

Today, Kade woke up and realized he was destined for another day of going to grandma's while Dan went to work and I (Kara) stayed at the hospital, after deep contemplation he expressed that he was trying to think of a way for his dad to stop calling grandma. Meaning that he didn't want to do the "routine" today. Buddy, I totally get it. We all want to stop, we are all tired. We've been at this for over 7 weeks. But, as far away as it still seems after a day like today, we are so close. So close to being home together again.

Tonight, I am wondering about how life is going to be when we are all home together. Am I going to be able to do this? I am bringing home a whole new Levi. A Levi that is much more demanding and that is used to 24/7 one on one attention and that is a 2 year old in a huge 9 month old's body. And I bring him home to a 4 year old that is starved for attention and has regressed behaviorally with the trauma of the last 2 months. Hmm, this should be interesting. I have to admit, I am kinda fearful as to if I will be able to handle it. Not just handle it, I want to do well, I want to lead my boys back into a secure "normal" childhood with a mom that supports and understands them and doesn't loose her patience with them. All the while trying to be a supportive wife for Dan in his new career that has had to take a side-seat to supporting his family.

On a lighter note, Levi has been recovering like a champ and can walk (with his braces) with just the support of his finger. He continues to amaze (and charm) all of his therapists and everybody he meets for that matter. It's fun to see the relationship that he has built with each of them and to see his personality bloom each day.

Photo from above is him standing in his braces with one of his therapists. For braces, I'd have to say they look pretty cool. I may not have fashion sense for myself, but when it comes to my son's orthotics, boo-ya.

Good night, I am so thankful for new days and for ending this one.

Kara


Sunday, September 25, 2011

A day trip home!


Since we are nearing the end of our time here at Rady's they gave us 8 hours of freedom and allowed us to take Levi off premises.

We started our day out with a breakfast at Swami's Cafe and then a walk along the coast, one our family's favorite weekend outings. Levi was constantly wanting to keep up with his big bro, which was refreshing to see. I felt like my 2 year old Levi is back! During our walk he even wanted to get out of the stroller and walk, which didn't last for very long, but was great to see his enthusiasm to try.

I guess overall that was the best part of the day, he wanted to do all the things he used to be able to do and I could see him pushing himself harder and harder, unlike any sort situation therapy is able to reproduce. His desire to walk was most apparent, he even stood all by himself a couple of times, with us spotting him.

So here we are, waiting to start another week of therapy. Sunday nights seem to be the roughest on both Dan and I. We very much look forward to the idea that this is the second to last Sunday evening our family has to be apart. Before today, two more weeks was starting to feel soon, but now that we got a taste of home life, it is feeling a bit longer. I am thankful that Levi didn't seem to mind coming back to the hospital and jumped right back into his routine here.

I am so excited to be home for fall and to start cooking and baking again. A few nights ago a friend brought a beautiful homemade meal (including fresh baked wheat bread) and it made me realize how much I miss eating food made with love, with nutrition.

Kade has taken to photography, hence the creative style of photos, but I think he's pretty good.
(And yes, in the top photo, Kade is wearing soccer socks, cowboy boots and he combed his own hair, that boy has got style, what can I say?)

Thursday, September 22, 2011

New shoes and crawling!

Levi got his orthopedic inserts today, and you might be thinking of those discrete little insoles that you place inside your shoe. Oh no. In the Ryska family we go big or we go home. These bad boys fit inside his shoes and go up to cover his calves and are hopefully going to provide his stability as he starts to walk. That is, as soon as we find some shoes that they will actually fit in. I'll get a pic up soon, consider it a miracle if Levi is smiling in it, I have a feeling he is going to put up a good fight while getting used to them.

I got to physical therapy late today, so I didn't get to witness it myself, which I am pretty bummed about but apparently he was full on crawling. Yes, crawling. Big step for Levi, this gets him to a whole new level and will hopefully allow him to be a bit more autonomous. Last night, he also rolled over in bed, another second "first" of his life. It's funny that since he is our second born that his first rolls and crawls didn't quite get as much attention as they might have if he was our first born. (sorry buddy) However, he is sure making up for the lack of sufficient celebration now that he has a second chance in making these milestones! Levi, we are so proud of you!

Some other exciting news that you may have missed is that Kade and Levi are getting a little brother! Yes, come early March we will be preparing our home to welcome a new baby. It still seems overwhelming now to think of having a newborn and Levi to contend with, but I know that a lot can change in the coming months, especially with the progress Levi is making.

The photo above isn't the best shot of Levi, but I wanted to try to get a shot showing the progress on his eye. Pretty good, huh! It's so nice to be able to look at Levi in both eyes.

Off to shoe shop,
Kara

Friday, September 16, 2011

Best Buds

The other day Kade came to visit Levi, which he frequently asks to do, but it doesn't always work out logistically. It was so fun to watch him and Levi interact and to watch Kade so proudly push his brother around. He was so thoughtful of Levi and really enjoyed showing him around the many fun things to look at throughout the hallways.

Levi's eye is continuing to improve, so much so that the surgery has been postponed and maybe even canceled, we'll just have to see how much more progress he makes. With the help of a little tape, he's got his eye open enough to see out of it! Ah, wow. Amazing.

Yesterday, his physical therapist and I were just in awe at the progress he had made over night. He was acting like a different Levi, doing all of the activities we were asking him to do without whining and seeming to actually enjoy it. We could sense he made a major breakthrough, praise the Lord.

Thanks for your continued support! It keeps us going when we are weary.

Love,
Kara

Tuesday, September 13, 2011

New Wheels

We upgraded from a stroller to a wheelchair today! Levi loves it. I am on the fence about it, I really liked that stroller, and there is no handy purse rest.

Kade is going to have a blast pushing him around in this thing!

Monday, September 12, 2011

A little white sliver of Hope

When I got to the hospital this am my mom told me that Levi's eye was a little bit more open than it had been. Now, if you know my mom, you would know that she sometimes makes things sound bigger or better than they actually are, so I was doubtful that I would see any significant difference (sorry mom, but I love this about you). But she wasn't kidding, Levi's eye has opened just the slightest bit. Wow!!! Really??? I had started to give up hope.

It's funny, cause the other day after I found out about his need for surgery I was praying for Levi and asking God for yet another miracle . . . Lord, open that eye . . tomorrow . . . So the next day when Levi's eye was still closed, I accepted that Levi's eye wasn't going to open and God wasn't choosing to perform a miracle in this situation. I still don't know what the outcome of his eye will be and if he will be able to open it by the time of the surgery, but I do know that I realized how silly I was to constrain God to my time frame. I wanted that miracle and I wanted it NOW. But like so many things in our lives, God has His timing and usually during the moment, it seems like God isn't answering or hearing us, but after we pass through, we are able to look back and see the Hand of God in more powerful ways then we could have even asked for. He knows what is best for us, even when we do not understand it or like it.

So, I'll continue to pray for the miracle it would be if Levi's eye opens, but I'll do so remembering who the God is that I am praying to. He is our loving Father who is our Creator and knows exceeding more about what is best for us than we do AND has the power to do all things. So pray with me, pray that we see more of who God is during this process and that we gain a deeper understanding of how much he loves us as we see God working in Levi's life and yours too.

-Kara

Sunday, September 11, 2011

Five weeks later

It has been difficult these days to find time to sit and write. That is a good thing because most of our time when at the hospital is spent pushing Levi around on the stroller. Seriously, the kid is getting cabin fever and most of his waking moments he wants to spend out of the room. It is great that during his rehab sessions, 3 hours of his day are out of the room and in a focused environment. He has been a champ in all this, working through the anxiety of not being comfortable in familiar positions, like sitting, and getting stronger. Recently with little support by his hands he is able to stay standing, and with a little more support he has taken a few steps, lefty gets stuck behind sometimes, but we are getting there.

When we are not at the hospital, either Kara or myself do the afternoon commute to pick up Kade at Grandma's in Escondido and make our way home for a little bit play time, dinner, bath, bedtime for Kade(most of the time this goes smoothly) and then a bit of personal time before our head hits the pillow to get rest to be there for our kids the next day. It is a grind, but it seems to be putting Kade in a good place and he is doing much better. Every night we pray for Levi, that he will get better and we will all be home together soon.

Kara and I have been like two ships passing in the night these days. Tonight we were talking about plans for the next few days and with me having evening appointments the next two nights, Kara is going to be doing two nights in a row, Monday and Tuesday, and the two of us will see each other some time on Wednesday afternoon. Man it kills me to write that, but for now that is our reality.

I know that for those who are following our journey, supporting us and praying for us, the details always help so that you know where the needs are. For us, we need endurance, especially for Kara, since she spends the majority of the time here. Please pray for our health as a family, both physically, emotionally and spiritually. Pray for Kara and the health and development of baby growing inside her. (For those of you who do not know, Kara is in her 15th week as of the posting of this post) We need people to keep visiting. During the days and in the evenings it is a long haul for either one of us here. Someone to talk to, to sit with Levi or take him for a walk while we get a moment to ourselves. We are going to get some sort of meal calendar set up this week, because in the back and forth that is our life, not having to worry about dinners when we get home and if there is milk in the fridge will be a huge blessing.

It has been 5 weeks since we arrived, over 6 weeks since Levi's symptoms showed up. It is difficult to envision life before all this. I am reminded when I see our friends kids who are Levi's age running around playing and and can see him there. When Kade and Levi today were playing together making faces and yelling at each other, I remember. When Levi smiles are me, which is often, I see the boy that I love. Yet in all this I long for for the day when this will be behind us. I don't long for the boy in my memories. I long for the boy I see before me to step(both figuratively and literally) into his new life. Because it is a new life. He has been given the gift of a promising life. Kara and I have the gift of our sons life back in our hands, with the responsibility and privilege to raise him up into a man. His new life will not be with out trials or challenges or annoyances(4-5 different hormones per day, one of which being a shot for the foreseeable future plus regular MRI check ups will be annoying), but we are talking with the doctors and staff about his long life...his LONG life. In the great big grand scheme of his life this is just a hiccup...a BIG hiccup...but he is recovering and will move forward. I just hope that as he grows and matures that he will come the know, understand and love the God who gave him his life, who carried his family through a very difficult time, and who has an amazing plan for his life, one that did not include a brain tumor when he was two years old cutting things short.

Before the surgery one of our friends posted a line to this song, "Our God" . The lyrics of the chorus spoke to me then and speak to me now:

Our God is greater, our God is stronger, God your are higher then any other,
Our God is healer, awesome in power, Our God, Our God.

Friday, September 9, 2011

Friday, we have officially been here over a month

Wow, so many updates! I just haven't been able to get to the computer for the last few days. So here is the rundown.

"Lefty", as we call Levi's left hand is rocking it! Yesterday he gave Dan fist bumps and then he proceeded to hand me a bunch of balls during OT. We all wanted to cry in joy at the observation. What progress he has made!

His legs are starting to show signs of more strength too. Today, I saw him advance his left leg in a way that he wasn't able to do before, which was of course encouraging.

The photo to the left is him in this contraption that will allow him to put light weight on his feet while he gain enough strength to put full weight on it. He wasn't so into it the first time, but as you can see he has discovered the joys of going up high in it and is enjoying himself!

Now for the not so good developments. Yesterday, we went to see another two ophthalmologists since his eye hadn't opened yet and our rehab doc was getting concerned. He originally theorized that he may have had nerve damage from swelling and that caused delayed opening. Now, he has come to believe that the damage may be more neurological from damage from the surgery. Ahhh! So, after observation of the doc yesterday they have scheduled another surgery for Monday, Sept 19th (time tbd). Obviously the scope of this
surgery is much more minor that his brain surgery, but I am not thrilled about it. It will involve 5 small incisions in his eye area, they squirt silicone in there (think rubber band) and wha-la, blink blink. I know it is necessary, since if we leave the eye closed it will stop functioning all together, so that is not an option.

We can hope and pray that his brain recovers in that area and restores the function to blink. We also don't know if there may be damage to this eye's function, as some have seen that it doesn't track just right, so we'll learn more after we get it open.

We had a team meeting with all the docs and therapist that are involved in his care and they summarized his progress for us and gave us a tentative date of when we may be discharged. October 7th! We also learned that his full recovery will be over 18 months, with the dramatic progress in the first 3 to 6 months.

By the way, a hospital is a very good place to be in a mass power outage. These generators don't mess around! I was feeling pretty good until the room started to heat up and they gave us a memo saying the air was off. It's one thing to have no air or fans, but to have no air, no fans and not be able to open a window, not awesome. After my 5 mins of contemplation about how I was probably going to suffocate, the air came back on and whew, we were saved. The whole adventure gave us all something else to occupy ourselves for a while, we even had to go "hunt" down some food. It gave me an excuse to eat potato chips for dinner!






Monday, September 5, 2011

Labor Day, a good day to labor

Levi was a super champ in PT and OT today, well at least that is what it felt like to me. As I was rejoicing in the slightest movement in his left hand or rather finger I felt so proud of him and hopeful for the road ahead. I mean this is the first intentional movement I have witnessed and it was so good to see. During the few moments when he was sitting independent of my support and didn't realize he was sitting on his own because he was leaning forward, reaching to pop bubbles, I was secretly thinking, "you are doing it!!! you are doing it!!!". Of course, I couldn't risk pointing that out to him, as he may decide the bubble game was over and he'd much rather lean back on me. I had to be content in keeping my praise focused on popping silly bubbles over and over again. I wonder if he thought it was odd that I was apparently so excited that he was popping bubbles, with all the clapping and cheering and such. Anything to keep him motivated.

A few shots from the last few days.



These beautiful girls are our next door neighbors, affectionaly known in our house as the "girls" or better yet "my girls" according to Kade. I'd say they are on the short list of Levi's favorite playmates. Today, he loved getting to spend some time with them and it was fun to see him so comfortable and happy.


Sorry for the poor photo quality, but I liked this shot of Casey (Levi's and Kade's Uncle), Kade, Dan and Levi. They are watching a very funny truck song and all of them enjoyed the moment. This shot also gives a clear shot of my little Levi's belly . . . ya, not so little anymore.

Levi (photo below) just finished yet another ride with his aunt Kelsey, you can tell from his grin that he loved it. They got to bond a lot this weekend, as Dan and I got to spend 2 nights away from Levi's bedside and she took the shift. Now that is love.



Sunday, September 4, 2011

A holiday weekend


Levi sporting his new shades

Levi's spirits continue to get better and better, although I have to admit that I can't quite get used to his "new" smile. Since he SO much chubbier than before his surgery his little smile, while still adorable, just makes me laugh each time it surfaces.

Dan and I have been hugely blessed this weekend, as our brother and sis in law (Dan's bro) have come into town for the long weekend to give us some relief. Dan, Kade and I all got to wake up together, which was a sweet time as Kade's morning routine is to come snuggle with us in the a.m. before we officially get up. Levi is always the first thing on his mind and starts the day off by inquiring about him and he says he misses him. This morning he asked why Levi never gets to snuggle. Our house is just not the same without him and it's apparent that Kade senses it as strongly as we do.

Since Dan and I had family to be with both boys, we were able to accept an offer from college friends to go to a Cal Poly vs. San Diego State football game. The night out and time with company was well needed and very restorative. It's like being torn in two to do these "normal" types of activities. While I desire to see friends and enjoy life, all the while I think of my baby slowly getting well in his room and it's hard to leave his side.

Today, we are looking forward to getting to church as a partial family and taking another few moments to be restored.

Thursday, September 1, 2011

First Official Day in Rehab


Here is a pic of Levi getting all geared up for his physical therapy. I wish his enthusiasm for getting dressed lasted through to his therapy. The little guy just hates it and it's hard to see him get so upset and dislike these therapists so much. They keep trying to offer him toys as peace offerings and he has absolutely no interest in them and just swats them away. I know that he will eventually warm up to them, but in the mean time it's hard to watch.

Today Levi got "discharged" from the hospital and "re-admitted" to Rehab. In reality, all that meant for us is that I had to sign some more papers and we had to weight and measure him.

Speaking of weighing him. My baby now weights just over 30 lbs, that's up 5-6 lbs from when we were admitted. When I try to lift him, he feels like he weights even more than that.

Tomorrow we are gearing up for a big event . . . a bath! Should be interesting. He used to love baths, so I hope he'll enjoy it, but I feel doubtful that he will.

Working with the therapists has made our days more interesting, but the more I talk with them the more I realize that I have a child with serious brain trauma and a long, unpredictable road ahead. I can't tell if I am living in denial or just choosing to think about the potential rather than the current reality.

Let's hope and pray his therapy goes a little bit better tomorrow!




Wednesday, August 31, 2011

Exploring our new pad


Today we have spent a lot of time "riding" round our new building. It's so nice having the freedom to unhook from his bed and explore. It does SO much for his spirits (and ours too!).

We got all the way down to a play area and he realized that he needed his shoes, so went back up to the room to get his shoes. He then realized that he needed socks too, so I went out to the car to scavenge around for a pair of socks (gotta love a well stocked mini van). So we got him all suited up for his stroll and went back to the park, with more appropriate attire. Well, kinda. We need to add clothes to the mix, he's been hanging in his diaper, which seemed appropriate until now. On my list of things to bring for him from home: clothes. He also insisted on wearing my sunglasses, for which I don't blame him, his eye must be sensitive after being indoors so long.

You may also notice from the photo that my boy has gained some serious weight. I mean he is chhhuuuuby. Every time I feed him (which is often) I can't help but laugh a little to be stuffing food into his chubby little face. I am used to chasing him and Kade around hoping they will eat enough to sustain themselves and so to have a kid that actually eats is a new thing for me. Good thing chubby looks good on him!

The rehab doc watched Levi eat today and noticed that the right side of his face seems to be not quite right. He suspects nerve damage, maybe from the swelling. This is also the likely reason that he has not opened up his right eye yet, even though the swelling is so much better. Time will tell us how the nerve heals, but the doc feels that recovery is likely, and so we'll hope and pray for a speedy recovery of the nerves in that area. It'd be great for him to have both eyes again!

Here is the video that I tried to post yesterday, but for some reason it didn't work. It's hard to decipher but his response to my question is "yes", but he says it in his cute pathetic voice. He then says his typical "cheese" when posing for a picture.
video
Love this boy.

Tuesday, August 30, 2011

Holy Awesomeness

So tonight I am quite happy to announce that we made it to the promised land. Of course the move happens right at bedtime, but hey, I am not about to complain about it.

This room is beautiful and it is everything that one could hope for as they look forward to an extended hospital stay. Here is his new room. Lovely, isn't it? There is also huge bathroom and bath that is not pictured. Can't wait to give this boy a bath!!


I am tired, so this will be a shortish post, but I just wanted to spread the exciting news.

Pray for Levi's anxiety during his physical therapy, as he is very unsure of himself and seems very scared to try things with his new body.

Monday, August 29, 2011

An evening stroll on a perfect summer night



Who would of thought that after THREE WEEKS in the hospital we would be so excited and waiting with such anticipation to be moved to another part of the hospital with an anticipated minimum stay of another 4-6 WEEKS? But hey, you gotta celebrate the little things, because right now the little things are big things. So here are a few of the little things that happened today:
Neurology has given us the boot and no longer want to care for us, so we have been transferred to orthopedic for his rehab. This is a big thing because from the stand point of the brain surgeons, you know the REALLY smart guys, his brain is clean and healing well so lets get the kid walking again. (The smart guy comment is as no offense to any doctors out there, but the saying does go, "This isn't brain surgery." not "This isn't knee surgery.") I mean currently aside from a little black eye, and bad hair cut and a 10 inch scare across his head, you would never know he had surgery. So lets get this kid walking again.
His sodium levels have been holding in a very tight range the last few days so they are no longer taking blood samples 3 times a day to check his levels. The hormone guys feel good about his current dosage, so we are going to move forward and just make sure he his drinking and peeing enough.
He is nearly completely unplugged. There is only one wire hooked to his toe to measure his pulse and oxygen levels, and his IV PIC line. All the other monitors are off. These have been bugging Levi the whole time. His IV meds are done tomorrow, so that means that he may get his PIC line out very soon and be completely free of "hospital connections".
Because he is so stable they are going to be moving him to the new rehab unit as soon as a bed opens up. Until then we are free to go outside and do as we please. We just can't leave the campus. Once we get into rehab we will have a lot more freedom and even get some weekend passes to go home once he is doing better. That is going to be a great place to get to.
The one thing that is keeping him from being in full rehab is he is unable to do the 3 hours per day that is legally required for him to be designated as a rehab patient. The doctor feels he is only a few days away from that, but is willing to get him into the rehab unit before he is officially ready.
We are pretty excited about the little things that have happened today. As a family we are getting into a new groove,Dan and Kara are switching off sleeping here with Levi and at home with Kade. Dan is getting back to working full time and Kara's full time day job for the time being to support Levi. We are grateful for the people who have and are coming down to visit Kara during the day. Levi is a great kid and all, but not the best conversationalist. Hopefully an hour of speech therapy over the next 4-6 weeks will change that.
Thank you for walking with us along this journey. The love, support and prayers that so many have given are helping to sustain us. Blessings to you.

Sunday, August 28, 2011

Sunday Funday


Today we enjoyed company from two of my closest friends and their family, it was a great way to pass the weekend and day and made this journey seem a little brighter.

I got locked out of Levi's room today because I was 5 minutes late for the shut down they do between 7-8 for shift change. I begged for an exception because my 2 year old was on his own in there, but the door keeper had no mercy. Now, I understand why they say to steer clear of a momma bear and her cubs, should you ever happen across them. If I had big teeth and claws I think I might have used them on this door keeper. Needless to say, I was not happy about having Levi in his room all alone, with his dinner in my hand ready to bring to him. Thankfully, he was just fine when I got to him. I won't make that mistake again.

I am headed into another night sleeping at the hospital. Each night I sleep here the more and more I hate it. I don't use the word hate lightly, but I actually do hate sleeping here. I like camping and technically this is not much different but for some reason this is just way worse. Okay, enough griping.

Levi continued to be very stable today, I think he even managed to be completely fever free today, wahoo! His sodium levels have been between 138-139 for the last few days, which is his ticket to rehab! His spirit is showing more and more and it's so fun to see him acting more like himself.

I did learn today that some of his docs want him to get an MRI on wed before they clear him of the meds he is on to fight a potential infection (nothing was ever found in any of the lab results). I am not super excited about him having to fast, and be sedated for another test, but I better go ahead and get used to it, because there are many more MRI's to come for this little guy. The good thing is that if the MRI comes back clear, he will get his last IV out and then be officially free of attachment to medical devise and cords.

I'll try to take pic of our adventures as we travel to our new room tomorrow, should be exciting. It's the little things that we have to celebrate these days. I am looking forward to leaving this room and phase of his journey behind.

Here's to hoping we actually do move tomorrow!

Kara

Saturday, August 27, 2011

What's to come

Whew! What a day, we tried to mix in "normal" life activities with the hospital bit and boy did it leave me tired.

I was talking with some friends about Levi's progress and prognosis and I came to a realization that Dan and I hadn't included some key details about his current situation in previous updates, so here is my attempt to keep everybody up to speed.

Usually, kids with this type of surgery/tumor are hospitalized for several weeks and then sent home as good as new. In Levi's case the surgery went very well as far as tumor removal is concerned but along with the tumor came most all of the connective tissue for his pituitary gland which we've talked about a lot in regards to his hormone balances, etc. What perhaps we haven't been as clear about is tiny blood vessel that was damaged during surgery, which damaged a small section of his brain. The area that is damaged is known to control movement, specifically on the left side of one's body. At this point Levi cannot sit up on his own, cannot use his left hand or leg.

We have started therapy to restore these functions, but this healing will take time. I asked one of the therapists, "how long????". Her answer is all I have to go on and it as such; "I don't know". She went on to say that if she was presented this answer by someone she would think to herself, "Oh yes you do, you are just not telling me." I respect her humor and honesty, because it's exactly what I was thinking. I pressed her for some sort of timeline, just to wrap my head around what we may be dealing with and she said, "One to three months". Okay, so it was sobering to realize that we are looking at months rather than weeks, but it was good to have a general understanding of what we are looking at.

All that said, we are looking at moving to rehab on Monday. As with all things hospital, I won't be holding my breath, but I do feel that it is reasonable to expect that it may actually happen.

Oh, one other fun thing that happened today is that he got his staples removed. I walked in at the very end of the procedure and I have to admit that I am glad to have missed this event! I heard he took it like a champ! Now we can attempt a better wash of that beautiful hair.

Okay, off to get my well deserved rest.

Kara

Thursday, August 25, 2011

Standing up, cruzing around

Well, kinda.


Today was about as eventful as it's gotten so far for Levi's rehabilitation. For PT they brought this contraption (shown above) that starts him off flat, secures him in, and then gradually lifts to 90 degrees. Today we got to about 70 degrees and then went for a cruise through the unit and for a look at the play room. Even though Levi's verbal response when asked if he liked it was, "no", the therapist and I both agreed that he really did like it. He also requested to hold his blanket for the big event, my boy loves his blanket.

I have to say, I miss all our old docs and nurses in the PICU. They were becoming like family, I mean, we were with them 24/7. The IMU peps are lovely and all, but it makes me much more eager to get to our final destination (rehab).

I've been slightly hesitant to post lately, as I feel like all of my posts would be repeating the same thing over and over again. Fever up, fever down, sodium stable, sodium low, heart rate high, heart rate better, threw up, didn't sleep, not eating, eating better and grumpy. I feel like once anything is better for any moment of time, I have learned that it can turn the other way before I could even expect it. It's hard not to feel discouraged and I know he is making progress, but I guess it is hard because it feels so slow. So slow that you can't tell it is actually happening until you take a step back from the day to day grind. It's nights like these that I am thankful that I can do just that. I have to remind myself that he is getting better and he will be my little boy who can cuddle in my lap once again, but just not tomorrow . . .or the next day.

Tonight, Kade and I are home together. We are trying to get this little guy back on some sort of decent sleep schedule and even get him back to the habit of sleeping in his own bed. I was up stairs rocking in the glider in his room while he was playing in the bath. I wasn't feel that great and I was just asking the Lord for the strength I didn't feel I had to get Kade down for the night. I was relishing in a few moments of quiet and I thought my little angel was just lost in his imagination to be that quiet for that long, so I thought I'd be a good idea for me to give a gander and check on him. Oh dear. I see an empty bottle of body wash and a very soapy tub and a very entertained 4 year old. Erg, I just bought that. Fortunately, I was too tired to really worry about it and I guess it was worth the few moments of quiet it gave me to prepare for the evening. So, since so many of you asked if there is anything I need. There is. Children's hair and body wash.

Kade then gave me the gift that I needed tonight, he went to sleep with no hesitation in his own bed. Thank you Kade, now I am really glad I was so easy on you for the body wash thing.

Thanks for still following along and for still praying and for sticking with us for the long road ahead.

-Kara

Wednesday, August 24, 2011

Great Night and a Great Day

The wonders of a good nights rest. Levi slept from around 7:30 pm to 7:00 am, which meant that I(Dan) got a good nights rest as well, only I napped so much from the previous night, I had a harder time getting to sleep myself. My night went something like this: almost asleep, getting there, deeper...beep, beep, beep(some alarm going off)...awake...repeat. Eventually it all worked out and Levi and I are feeling rested. Kara was home with Kade for a second night and he is going to be coming doing to the hospital for the day. Dad and Kade will probably get away for a little while this afternoon for some bonding time and then another night either at home or we may try to have Kade stay with us here at the Ronald McDonald House.

Well enough about us, back to Levi. All his levels are staying in a good range. We don't want to get to hopeful, but a rehab transfer is looking closer and closer. There he will get 3 hours of rehab each day as opposed to 30 minutes. His physical and occupational therapist are not his favorite people, only because they are pushing him in his development each day, but they are great people and we know they will get him back to 100%. It will take some time for his strength and confidence to be built back up. So often I find myself thinking about Levi running around, dancing, and just being a 2 year old. It brings me joy as I look to the day when he will be able to do those things again.

Had a good chat with endocrine today, getting a better picture of Levi's near and long term treatment, which will just take a little getting used to as we work it into our daily routine. It does mean Levi will require somewhat of an instruction manual for anyone who is watching him for a long period of time. But in the grand scheme of things that is all no big deal. The CANCER is gone. I will take a few pills and a shot any day over the alternative.

I recently was listening to a message preach out of the first chapter of Philipians in the bible. Here is the link if you want to listen to it. It was about having victorious joy. When we place our hope and trust in things that will fail us then it is easy to get discouraged and let down. But as we place our hope in the One who is faithful, surrender those things that we have no control of the the sovereign God who does have control, and we truly believe that as it says in the book of Romans chapter 8 verse 28 that for those who love God, He works all things for GOOD according to His purposes. The key thing for me these days is the His purpose part because that is what I am resting upon, God's purpose in all this, the way He is using this to mold and shape ourselves more into the people He designed us to be. This type of perspective helps put the circumstances of life into checkmate. With the help of God, we win no matter what. We trust that God's got this, we rest in His power and purpose, believe that He is much bigger then all this, and take control of the things we can and leave the rest in His care, letting Him worry about the things we can't change or control...we have victory, we have joy, and that is a great place to be.

Tuesday, August 23, 2011

Transferred, yeah baby!!!

Not down to rehab like we are ultimately hoping, but to Intermediate Care. His vitals will be checked every 4 hours, instead of hourly, which will hopefully lead to some better nights of sleep and it is a good sign that everything is getting dialed in in regards to his hormone dosages. The one thing that has been difficult to get right is the hormone referred to DDAVP, which regulates urine output. Too much of it and he retains water causing his sodium levels to drop to low. To little and he literally pees like a race horse and his sodium levels become to high and he feels like he is dehydrated. His high heart rate the last few days may have been due to not enough liquids, who knows. The last few days have been getting all this figured out.

One thing I have learned is how important it is to speak up when you have ideas. I am not sure if my suggestion for the hormone dosage was taken, but the plan moving forward is what I suggested to the nurse last night. A few days back, Kara's mom had a thought about the timing of his hormone dose, which was keeping him awake at night. All that said, Levi has improved the last few days with the help of the staff, but also because Kara and I have been proactive with the things we can have control of, sharing our ideas, giving him a quality diet and "exercise". We hope our stay in this unit is short and we move to the next phase of rehab quickly, because that will bring us closer to home.

Now that Levi is stable the next focus of Kara and I is the stability of Kade, our 4 year old. He has been a champ in all this but the last few days have been difficult for him. The sad reality is that the more time he has away from mom and dad, while staying at the grandparents, the better he does. If he gets a dose of time with mom or dad it is just too hard for him to get back to normal. So Kara and I are going to be putting a lot of focus on Kade and his stability over the next few days to determine what is the best setting for him over the remainder of our time. This is a major prayer request for us because it hurts my heart knowing what he is going through.

We have gotten some glimpses of the Levi of old, he said "cheese" yesterday for a picture we took and we are starting to see some smiles. Hopefully a good night sleep for him will revive his spirits tomorrow.

Kara and I are getting anxious about each of our work situations. Both of our places of employment have been amazingly supportive, but the reality of all this is that we will need to get back into things very soon. Please pray that as our Levi stables up, that we will be able to develop a daily routine and that this will allow us to support both Kade and Levi and put our best efforts into our jobs outside of caring for our kids.

Thank you for your prayers and support. The biggest need we are feeling these days are for visitors. So again I will put forth our shameless plug for a little time down here at Rady's. The sun is always out, there are some great play grounds for your kids, and it really lifts our spirits when people stop by.

Blessing,

Dan and Kara