Friday, April 6, 2012

Eight months ago . . .

Eight months ago: We surrendered our baby into the loving hands of his surgical team and trusted that God would take care of him as He controls those things beyond man's capabilities. Time and time again Levi has amazed us and we are so thankful for his recovery. Still so thankful for all the support around us and so hopeful for continued recovery.

We have so many good things to report since our last update. First and foremost we have "Baby Will" as Levi calls him. Our sweet, huge baby Will Joseph. He's been a perfect addition to our family. Kade hugs him all day long and shows him all his favorite things and is actually quite helpful in a lot of ways. Levi is very proud to have "brober" next to him in the van and seems to generally like Will. Will was a whopping 10 pounds and 5 ounces, yes a biggie. It explains why this pregnancy was so hard, I was carrying a super human inside of me. His labor was by far the easiest of all three and almost seemed easy in comparison.

When Will was just 4 days old we met with a Vision Consultant that we got connected with through one of the support programs we are a part of. She was able to direct us to a new Opthmologist that she believed would be a better fit for Levi. I called and got a next day appointment due to a cancellation (the next after that was over 6 weeks out). I'll have to admit that I wasn't thrilled about taking a 5 day old down to La Jolla, but I wasn't about to turn it down. The doctor gave us something that is invaluable when it comes to healing: Hope. He helped us understand more about Levi's potential and emphasized that he is amazed at how well he is doing considering what he had been through. He's not going to rush into any procedures to improve upon Levi's situation, since he wants to give Levi's body a chance to continue the healing process on his own, but down the road we may have options to help things along even more. Once particularly good thing we learned was that because of Levi's young age, there IS hope for his optic nerves to heal, even if they had been damaged by the tumors which encroached on them. Wow, this was hugely good news, especially since we hadn't even considered it a possibility. He also brought the patch therapy from 4 hours a day down to 1-2 hours a day. This pretty much made my year. If you read the last post, you might recall how the patching affected our lives. Awesome. Super awesome.

This week Levi got fitted for a new orthotic device similar to the brace he wore when he got out of the hospital, only smaller. The physical therapist is hoping it will help adjust his foot alignment, since his left foot still turns inward. I can't say I am too excited about it, but I am certainly willing to try anything to help Levi. Thankfully, Levi is excited about it since he gave a fit or two about not getting to wear his new "boot" home. He didn't quite grasp the fact that it took 2-3 weeks to fabricate his new one. Let's hope his excitement sticks around and this device helps him!

I am particularly looking forward to our next Endocrine appointment, as I hope to learn more about the growth hormone that Levi will begin to take and when exactly she anticipates that to start. I think they will wait until August until they start, but wonder if they'd consider starting earlier since Levi has had clean MRI's. I know that the introduction of growth hormone will bring on new challenges along with it, but I am eager to see my little man grow. I realized the other day that I don't always recognize that Levi is "growing" because, well . . . he isn't. But he is maturing into a 3 year old. He is becoming more capable and I have to remember that just because his body isn't changing, his mind is.

We had a week or so that Levi woke up with a completely soaked diaper (and blanket, and bed) every morning,
rather than the normal once or twice that we've become accustomed to. It was clearly time for a medication adjustment. Obviously, I am glad that he is more comfortable and not being woken by his thirst/diaper, but I am also quite happy that I don't have to completely wash and remake his bed everyday. All of his other meds seem to be doing their job and Levi has learned to take his pills whole, rather than crushed and in a bit of water. It's the little things that help, like not having to crush and mix his pills twice a day. As Levi says, Wee-ha.

Levi continues to LOVE his physical and occupational therapy, which we go to Monday's and Thursday's. A major focus is working to strengthen the left side. He's got great range of motion, just still a lot of muscle weakness. He's not running yet, but he moves pretty quick with his adapted run. It's the sweetest thing, yet kinda sad,when he walks really fast and is really proud of himself, he exclaims, "look ma, I running". Keep up the good work my boy!

We have also started the process to get him going in pre-school next year. One thing you find out when you have a special needs child is the amazing support system our school system and state have set up. Wow, what an invaluable support. So far we've completed half the evaluations and early May we will meet with the school district to see what their recommendations are for him. I am VERY curious to see what they will recommend for him.

As much progress as we have made and are still making and there are moments that Levi seems normal . . .there are also moments that absolutely break my heart as his mom. A few days ago my heart broke for Levi as we played at the park. It was a "normal" day, we woke up and went about all the daily things and got out to enjoy a beautiful day with some friends at the park. Once at the park we all got out of the van, each excited to see our friends and enjoy some time together. There was nothing unusual about the day, kids playing everywhere and lots of fun being had. Levi has become much more independent at parks and I am thankful that he
ventures off on his own now. Just a few months ago he would cling to me, not confident enough to go and play on his own. He continued to play for a while and I continued to keep an eye on him, while trying to get my chat on. I glanced over and saw him halfway up a landscaped hill (the kind kids are not suppose to play on, but they can't seem to resist) I saw him struggling and falling and . . . . alone. Alone because all the other kids already ran up the hill and left him behind. Alone and his knees dirty from his many attempts to keep up with his friends. I ran over to him to help him out of his predicament and looked at his sweet, confused little face and my heart broke for him. Oblivious to the challenges that are to come as he grows aware of the differences in his body. I escorted him over to the play structure and he sweetly initiated making pies for me out of the mulch, but the fact that he was the only kid left to play with his mom didn't escape me. I almost cried for him right there (well I did a little bit behind the shelter of my sunglasses), but I held it in til now. I know every child will struggle as they grow, but it hurts to see your child struggle in this way.

May 12th Levi will turn 3, and we are planning to make it a special celebration, as he has gone through so much this past year. We have a lot to celebrate!


  1. Such good news about his eye! You are such a good mama and I know that God designed you specifically to be Levi's mama, knowing you would walk this road together. And that picture of the boys w/ the eye patches is SO cute! I can't believe how "Ryska" Levi looks and how "Skerritt" Kade is. DNA is so awesome!

  2. OH sweet friend.... what an amazing update in so many ways. I LOVE your vulnerability and honesty, my mama heart breaks right along side of yours... on Jesus will fill those voids and make him whole :) as much as we as mama's want to so badly.

    We literally pray for him every night, he is on a prayer stick in Emery's jar and she absolutely loves praying for "her buddy Levi" and I love it to... we remember you guys daily. Don't give up the fight girl, the road may seem long and difficult, but you my dear friend are fighting the good fight, being the advocate, support, and love your boy needs. You are AMAZING and all you boys are lucky to have you!
    Take care of yourself my sweet friend, I love you,

  3. Wow
    I guess I didn't realize the struggles are still so intense...It makes me want to cry hearing that story cause I know that all mom's can understand that feeling...The best thing is that God knows what you are going through. I will be praying for you all.