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.


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,

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.


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.


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!