We are just about 4 months out from our stem cell journey. 4 months ago today we were arriving in Panama. I had to share this picture of Colt riding his bike to school because it has a funny story to go with it. The school rule is you can't ride your bikes unless you're 3rd grade and up- well, Colt is 4th grade but little brother is 1st grade. So we had to stop riding to school. Colt was not happy with this arrangement, so he was giving me a hard time about it relentlessly. I finally told him to take it up with "the man." Go talk to the Assistant Principal if you don't like the rule. I was kidding, of course, and I never in a million years thought he would. I was trying to get him off my case. 

Sure enough, he marched up to him that week and negotiated his case. Last school year, Colt would barely say hi, let alone strike up a conversation like this with an adult. The Assistant Principal told me he was so shocked by the conversation, he ended up telling him that as long as they had an adult with them- they could ride again. So today we were back at it!

We also had the 3rd annual Special Olympics. It was such an amazing experience. He was so much less nervous, and really into it this year! Here are a few videos of the school yard, the olympics and lastly.......this kid got on a dirt bike by choice and rode it. HE HATES LOUD NOISES. We couldn't get him to even sit on it while it was off a few months ago. He rode it! And loved it. I am floored. Just absolutely shocked and SO grateful. 

I received the email today from Panama to update them on our progress. I can’t believe it’s been three months already. It’s hard for me to put to words all of the little changes we see- but they all add up. Language is probably the biggest change, he’s using so many new words and phrases. He was recently retested in speech, and when compared to his October test scores- he’s made some great progress in Expressive Language.

He’s been much braver and trying more new things. He’s been watching little brother do crazy things and not to be outdone, started trying some new stuff on the bike. That’s a pretty big deal for this kid who is normally extremely cautious and timid for things like this.

He’s also been wanting to be more independent. Dressing himself, taking showers and handling most of his own personal care needs (teeth brushing, hair washing, etc.). Pre-SCT he wanted us to do everything for him. And I’d bet he still would like the help but he’s been much more eager to try on his own.

We were told it could take six months to see any changes so I’m looking forward to potentially more changes. He recently had a cold/fever and it was very tame compared to how his body would normally handle a cold. Stem cells can do wonders for an immune system. I hope this is the new normal for him, as we have a history of being sick pretty often.

Okay, so I have been terrible about updating this. It's mostly because it's very hard to put to words what I have seen change. It's all very small things since that last epic dentist visit. A lot of little things. But don't they say- it's the little things that make life sweet?

One big change around here, we ditched the electronics. We took the games off of the iPad about a month ago, and then two weeks ago just ditched the devices entirely. I have seen a MARKED improvement in his behavior. Both of them really. Very little pushback from them too, which is fantastic. I am reading a book called "Reset Your Child's Brain." If you want to be scared to death about what cell phones, gaming and electronics are doing to our children's brains- read this. Colt is at a higher risk of this given he has developmental delays, ADHD and behavior issues. We notice a huge difference in negative behavior when he's just had iPad time.

Back to the update.....he's taken more of an interest in doing things like writing. See below. A totally unprompted session of him getting the paper, stapler and wanting to write math facts. I did help with the math a little, but the fact that he WANTED to do this is completely new.

He's also started wanting to be more independent. He has fine motor trouble, and gets frustrated very easily with things like zippers, socks, etc. He's been dressing himself for the last two weeks since school started- and what's more- he doesn't want my help when I offer it.

He's also been eating a little better. Not a lot. But definitely an improvement.

Can't wait to see what else unfolds. Hope everyone is having a great start to 2019!

This week we had two major changes happen! The craziest one is that Colt allowed a teeth cleaning at the dentist. This may not seem like a big deal but in our house it is HUGE. Historically he won’t even let the dentist do more than look, and only with his eyes- no tools allowed. So we have had to knock him out completely down at Rady hospital twice to have all the work, x rays, and deep cleaning done because he will not cooperate. Yesterday, he completed a cleaning and X-rays. I am so blown away, I can’t quite believe it myself.

On Tuesday this week, he had his Christmas program. He’s never participated in these types of events. He gets really nervous and anxious. He usually just stands there and looks somewhere else. He actually sang!! He was super nervous and I don’t see a career in theater, but the fact that he participated is major. It’s our very own Christmas miracle!!

I was going to do an update soon, but didn’t have anything good to share just yet... but I think he may have done something new tonight. First, in an effort to be totally honest about this journey, I will say things have been super rough behavior wise. I was warned that the first 1-2 months can be a roller coaster, and it has been just that. He’s been very moody and irritable pretty much everyday since we have been home. It feels like living with a hormonal teenager; don’t look at him wrong or suffer the full wrath of his attitude. 

I was about in tears tonight because I was feeling a little overwhelmed with his moods, and it was a rough afternoon of doors slamming and tears and hurt feelings over everything. It takes very little to set him off right now. After he calmed down a little, he asked if he could have the white board and he sat down alone and wrote out his numbers to 20. I didn’t ask him to do it, and I have never seen him do this. I asked his previous teacher who had him three years in a row if she had ever seen this, trying to confirm whether or not this was truly something new. She said she had never seen him do this in one sitting, with this level of concentration and self-correction when a mistake was made. I happened to catch it all on video! Thankful for this little moment of encouragement, it came right when it was needed most. 

Here’s a little back story on this trip. Roughly two years ago I started researching stem cell therapy for Colt. We banked Jaxon’s cord blood 7 years ago, with hopes that the technology would one day catch up to sibling cord blood for CP treatment. They are currently treating CP in the US with your own cord blood successfully (Duke University is at the forefront of these trials and seeing success). We tried to get into their sibling study but we weren’t chosen. I’ve been digging around trying to see what our options are, and I kept coming up short. I stumbled on a YouTube video of a child with Autism being treated outside the U.S. by the Stem Cell Institute, so I looked into it and it seemed really promising but also really scary what with the international travel component. I’ll be very honest, and I am embarrassed to say this, I had no idea what Panama was like and I pre-judged it as being scary to navigate. I kept my eye on it and went back to it a few times, but I just didn’t feel the push. 

Last year, as most know, we started the Hemp Oil journey and that brought us huge progress. Things were going really well, and when things are good- at least for me, my search for great wasn’t on the radar. I recently heard a saying, “good is the enemy of great.” Things were good enough. That all changed a few months ago when Colt had to change teachers, and his AMAZING school aid- both were very hard for him to deal with leaving. Everything was new, and we fell apart. All the progress we saw, was evaporating quickly. It was a good wake up call. The hemp oil is huge and we will never be without it, but it isn’t a cure. It’s a huge help, but the reality is- it’s not enough. It isn’t enough for him to be able to truly deal with life. If life hasn’t been hard for you- just live longer. It’s hard for him, and I am realizing it will just get worse. The gap is widening, and the challenges will just get bigger. 

I always imagined that if God called me to something, it would be something that I wanted to do. That’s not actually how it goes, it turns out. He calls you to things you usually don’t want to do, or are terrified of, in an effort to shape you. A friend of mine called me one day in the middle of this mess, and said they were seriously going to move forward with stem cells. We had previous conversations about it, and the call came at the exact right moment. I made an appointment with an OC doctor, and started reading everything I could get my hands on. I did nothing but research for two solid weeks. We saw the local doctor, but felt no connection to it. It was unbelievably clear to me, we were going to Panama. It didn’t come from me. It was an exterior push, that I can’t even explain. I was terrified, I didn’t want to go but knew we had to. 

I applied to Panama, got an answer from them within two days and had a full approval within a week. It all happened so fast. I prayed about it, dove into the bible and my study and just felt like everything was pointing me to this. I was hoping to talk myself out of it. International travel with two kids (which might sound fun to the adventurous person, but that isn’t really me), the idea that he would cooperate for 5 “pokes” (1 blood draw and 4 IV infusions), and what would he feel like? It was all kind of suffocating. The dates came, and I chose the next available treatment and had it all booked that day. Extremely ungraceful, is how I would characterize the way I handled the 6 weeks leading up to the trip. I wallowed in stress, and worse case scenarios. 

99 out of 100 things we worry about don’t happen. What an epic waste of energy. The trip was amazing. The staff were incredible. We didn’t just survive the trip, I really enjoyed it. We don’t know what will happen, if it will work, or what to even expect. But having hope, is something that I haven’t had in a long time. They said it can take up to 6 months to see any changes. I will do my best to update everyone on what unfolds. I am, as always, so grateful for the prayers and well-wishes from everyone. I know for a fact, that prayer works. He is living proof. 

 A quick little tour of Panama. We stayed at the hotel for the most part, but we did venture out to Casco Viejo, the Panama Canal and to Juana Tranquilo for dinner.

We are at the Tocumen Airport waiting to board our flight home to LA! The week went so fast. I was dreading this trip a little, and figured I’d be itching to get home but I actually loved it and could stay longer. Send the dogs. 

Here’s to the hope and excitement this place has brought to us! I hope to make it back in a year.... because that means it will have worked! 

 Today is our last day. We had no treatment and no plans. I really wanted to go see Casco Viejo before we left so we took a trip to the old city. It is so beautiful! Five minute cab/Uber ride to the city. It reminded me of Europe. The old buildings are gorgeous. We had to get Panama hats, because obviously that’s what you do in Panama. There are cats everywhere (but don’t worry Mom, they are SO well taken care of here. They’re street cats but there are water bowls every few feet and cat food on every corner which is really sweet).

I could’ve stayed here all day but it was a pretty hot day and the kids were really ramping up the complaining. We grabbed some lunch at Finca Del Mar, such a cute restaurant with swings at the bar. I had a legit Pina Colada, made from scratch. We had fresh fish and chips. Then we walked back to the American Trade Hotel because I read in a travel blog that their coffee shop was amazing. Cafe Unido didn’t disappoint. We bought some small batch roasted coffee to bring home.

The cruise ships dropped off a few hundred people so the town was bustling with tours. If we come back for another round of stem cells, I would definitely spend more time here! Off to the pool to relax and then pack up for our morning flight home tomorrow. They are decorating the entire city for a Christmas Lights festival. It’s so cool!