Stem Cells, miracles and faith

I went to Dominican Republic expecting a miracle. Will he walk out of the clinic? Maybe he will say his first full, clear word. What will it be? All throughout the long journey I kept fantasizing about what the miracle would be.

I went with a heart full of faith. Something felt different about this treatment. Something felt powerful. I can’t describe it, but deep within me, something stirred, something gave me hope.

So we landed at Dr. Rader’s clinic in Dominican Republic with very high expectations. Nathan was excited to receive the stem cells, I had been whispering in his ears for days that he was going to have a very special treatment. I had been asking him to welcome the cells wholeheartedly to his body, to appreciate that they were coming into him to help him, to steer them and guide them to his brain. I could feel his acceptance.

The treatment was simple. They started an IV. The IV nurse was wonderful – she got the IV in on the first try, which is unheard of for Nathan, it was virtually a first. Then we waited.

After a short while Dr. Rader came in with two small injections. I couldn’t believe so much hope was placed into a couple of injections with less than a teaspoon of liquid in each. I held them in my hands and prayed. Then he placed one of them into the IV, and the other one was given to him via 4 shots in his thighs, 2 in each leg.

Nathan didn’t even cry. I held him and whispered to him and told him about the miracles that were about to happen. He watched Elmo in his DVD player and accepted.

After the shots we waited. I watched him like a hawk, looking for the miracles. After about 20 minutes, Dr. Rader said we were done, and sent us back to the hotel. All the while, I looked and waited. When will it happen, I wondered?

We arrived back at the hotel and I was excited, nervous, happy. I saw another family that we’d run into at the clinic, so I asked them how it’d gone.

The mother was virtually levitating with excitement. In just a few hours they had already seen many miracles.

Their son Euwen has moderate Cerebral Palsy. He’s a gorgeous little boy of 6. He can walk with a walker, speak, and is just radiant. They started telling me about all the miracles they had seen. For the first time in his life, Euwen was able to take reciprocating steps. Usually he drags both feet together when he’s in his walker. But minutes after the stem cell shots, he was able to take steps in his walker with his feet flat on the floor. In the past he always stood on tippy toes and couldn’ t place his feet flat on the floor.

He stopped having spasms. I heard this from Euwen’s own lips. “Mommy, I’m not spasming anymore.” Then he showed off a bunch of new skills. He could move his wrists and hands in circles. He could draw circles with a pen and paper. He could move his arms and hands effortlessly. His body was relaxed and his adductors loose. All throughout the afternoon and night he showed us new things. “Dr. Rader fixed me!” he said.

Through it all, I kept watching Nathan like a hawk. “Has he done anything?” Terri and George, Euwen’s mom and dad, kept asking.

He’s a little more relaxed. He’s holding his head up a bit better. He seems to be standing up a bit better. But nothing major. “Don’t worry,” they said, “it will happen.”

We said goodbye to Euwen’s family and started our journey back home. I had heard of a child that said his first word on the way home from Dr. Rader’s clinic. So on the whole journey home I listened and kept saying different words trying to get him to repeat them. And then the plane landed in LA, and we were back home, and Nathan wasn’t walking or speaking.

So now that we’re back, a lot of people have asked, how did it go?? Did it work??

Yes. Definitely yes. Perhaps I didn’t see the huge miracle that I expected. But I see a lot of little changes, which in a child like Nathan, are very important. His hands are more relaxed. He can open them and reach for things easier. When I hold him against me, he holds himself better. On the plane home, he was able to reach for, grab, and hold on to a banana. I usually force him to grab it and motor him through the motions of taking it to his mouth. This time I was able to turn his hands towards his mouth very easily, and he held on to the banana by himself. He sat up watching his DVD and held his head up in midline. His head and trunk are stronger. This morning he took some steps towards me while Owen held his body up. He is more alert. He is vocalizing more. His tongue is moving better. This morning we gave him some snacks and he was moving his tongue and chewing the cracker, instead of trying to suck on it, like he normally does. On the way down to intensive therapy clinic this morning he was holding his body up while sitting in the car seat.

A good friend who hasnt’ seen Nathan in about 6 weeks saw him this morning, and commented on how well he’s doing. Maybe I couldn’t see a big difference because I’m with him all the time, but she does see a big difference.

It’s hard to describe all these little changes. Seen by themselves, they’re not major. But seeing them all together, all happening right after the treatment, I know it’s the stem cells. I know they are working in him.

Can they unfuse his brain? No way. But maybe they will become new brain cells. Maybe they will form and become a corpus callosum. Maybe they will become occipital cortex. Maybe they will create new synaptic connections. Maybe they will create a completely new area of the brain that can take over motor skills. Since he is missing so much brain tissue, I don’t see why this couldn’t happen.

I have faith. And this was the miracle. This treatment helped me to have faith again. This treatment reminded me that it doesn’t matter what we do, what matters is whether or not we believe. In this journey I learned that I have to believe with all of my heart. Believing is achieving.

I was also blessed to see Euwen’s miracle. It gave me even more confidence in the treatment. I can’t describe how amazing it was to hear Euwen boasting about all the new skills he acquired in just one day.

I think the stem cells will take some time to work in Nathan. Euwen’s brain was moderately damaged. Nathan’s brain is severely malformed. So they have a lot more work to do in Nathan. It will probably take time. But I know they will keep working, multiplying, and helping him.

Most importantly, I feel that we did the right thing for Nathan. We are doing everything we possibly can to help him. We gave him a huge offering, and I don’t regret it for one second. Even if it only helps him achieve little things, it’s worth it. But maybe over time we will see bigger and bigger accomplishments. If we don’t, it’s okay. We tried, we did our best.

I have finally arrived at that place where dichotomies intersect and abide in synchronicity. I used to think that if I accepted Nathan’s condition I didn’t need to do all these things to help him. That doing all these things to help him meant that I didn’t accept him with his limitations.

Today I understand that I can accept him 100% for who he is with his level of skills and abilities, while offering him opportunities to develop new skills. It’s not different from a parent taking his child to swim classes, baseball, art, etc. They accept the child for who they are, while giving them lots of opportunities to learn and develop new skills.

So this stem cell journey brought us big and little miracles, and lots of faith.

Tommorrow Nathan starts his intensive therapy at NapaInstitute.com We hope that the intensive therapy will orient the stem cells so they are used for motor skills. We are excited to see how the program goes.

Stay tuned!

We’re Home

Nathan and I got back this morning.

We are off to a Wiggles concert, so I can’t write a long update, but in the meantime, here are our pictures for the trip:

DR portraits

Here’s a sneak peak:

Enjoy!

We’re in DR

After a very long day we made it to Dominican Republic. We made it to the hotel at 11pm local time.

Nathan was an absolute angel of course. He was happy the whole time, even though the trip was intense. What an awesome little guy.

Of course we had a couple of mishaps.

First, our flight from Miami to DR was delayed. Then, when we made it to DR, I thought I lost my wallet and burst into tears. I had about 10 people searching for it and then found it in my bag. Then I made it to the hotel and there were no restaurants open, so I burst into tears again and one of the kind employees had to go into the kitchen and made us food.

Okay I have to go, the driver is picking us up to go to the clinic.

More later…wish us luck and pray for us!

Off to Dominican Republic

We’re leaving in 10 min’s to go to the Dominican Republic!

Please keep Nathan in your prayers, particularly on Friday. Please pray that the stem cells go straight to his brain and become brain matter. Please pray that there are no problems with the procedure (it’s just an IV).

We’ll post as soon as we can to fill everyone in!

Thanks so much for thinking of us.

Fundraising Ideas

We need your help!

We need to organize a big fundraiser to help us raise money for Nathan’s care. We are exploring a lot of options to try and improve his chances of developing, and all of them are very very expensive.

As someone recently told us, brain damage is big business, which is wrong on so many levels. Dont’ worry, we have plans to do something about it. For a sneap peak, visit EmpoweringSpecialKids.com

In the meantime, we need help. We want to organize a big fundraiser to help us raise money for Nathan to have various types of therapies.

This is a very difficult thing for us, Owen and I are very independent and we have a difficult time with the mere thought of fundraising.

But we will do anything for our son, whatever it takes to make sure he has the best chance possible at the highest quality of life possible.

So here’s our request. Could you send us some ideas for fundraisers. Maybe you’ve been to successful fundraisers, maybe you know someone that has done one, maybe you yourself have. We don’t really know what to do or how to go about it.

Any ideas would be greatly appreciated.

Thank you so very much.

I can fly!



That’s how my day started today. Marcela takes Lucas to park, Lucas sees dog, Lucas lunges, Marcela flies.

I don’t think the physical pain was as intense as the emotional one.

If it had only stopped at that, I would’ve been fine. But I wouldn’t let go so he kept dragging me while I was on my knees. I got bloody knees, foot, hands, ankles.

Never hold on to a great dane who weights more than you when his mind is made up. That’s the lesson of the day.

Stem Cells, here we come

So, after much deliberation, we’ve made the decision – we’re taking Nathan for Stem Cell therapy next week in the Dominican Republic.

We are hopeful, nervous, excited, apprehensive. But in the end, we decided, it’s a risk free, painless treatment that offers the potential to help him. So we’re gonna do it.

We leave Thursday morning, land in DR in the evening, go to the clinic on Friday for an IV shot of the stem cells, grab a flight Saturday morning, back home Saturday night.

Then we can rest and catch up on Monday, and then Nathan starts intensive therapy at NAPA on Monday morning.

Please keep us in your prayers, this is a scary and very active time for us.

Shriner’s Debacle

Yesterday we had our appointment at Shriner’s Hospital. It was the biggest dissappointment we’ve had in a long time.

Our appointment was at 11 am. They didn’t even call us in until 1pm. Nathan was hungry, we’d finally started feeding him when they called us in.

At about 1:30 the doctors walks in, makes me waste my breath giving her Nathan’s entire medical history, unless to say they can’t help him because he can’t sit up and is non-ambulatory.

Now, these people have Nathan’s medical records, I gave them his entire history. Why did they make us come in, waste our time, then reject Nathan? She claims they have limited resources and want to help kids that are near ambulation. Now I was told about Shriners’ from another parent whose child isn’t ambulatory!

It was just a very depressing experience. We missed 2 other appointments to take him there, and wasted most of the day. Not only that, but I hadn’t worked on getting him his DAFO’s or a wheelchair because I’d been told Shriner’s would help us get these items. So I also wasted 4 months, which is when the application process started.

Very frustrating.

At least now we know, so we’re starting a new type of journey to get him what he needs.

Just thought I’d give a heads up if other parents are trying to apply, find out BEFORE your appointment if they will even consider your child.

Neurocognitive Assesment

We got a copy of Nathan’s neurocognitive assesment.

You can see it here:

Report

We are so grateful that we had the opportunity to have this assesment. He is doing so well for a child that can’t explore his world by himself, and especially, a child with a vegetative prognosis!

Owen and I have a running joke….we always comment on how smart this kid would be if he had more than half a brain! We’d have a little genius on our hands! He does so well with the brain he does have and we are so very grateful.

The report gave us some specific areas to work on so we are trying to establish relevant activities to incorporate into his days.

We’re easing our way back into all his therapies and trying to get him ready for NAPA on march 31st!

Stay tuned :-)

Hello

Hi everyone,

Sorry it’s been a little while since I’ve been able to update, we’ve all been pretty sick and under the weather.

We saw my aunt and her family in Florida last week and enjoyed our time with them. They were wonderful to us and we enjoyed seeing them after such a long time, particularly my cousin Casey. She has CP and we were inspired by how well she’s doing. She’s just a wonderful person, very independent and self sufficient, and just a joy to know.

Here are some pics:

This is casey

My aunt and casey

Nathan got sick while we were in Florida so he had a hard time. Owen and I caught his bug and haven’t been feeling too well either, but we’re finally starting to kick it.

Stay tuned for more updates.

The Secret…again.

I watched The Secret again tonight. Once again, it reminded me of so many things. Particularly, I remembered this:

1. Ask
2. Believe
3. Accept

These were said to be powerful methods for change. Once we know what we want, we have to ask for it. A powerful method of asking is visualizing. Then, once we visualize, we have to believe, with every ounce of our being, that it is possible for us to have what we’ve asked for. Then, even BEFORE we get it, we have to accept it. We have to bring the result into the path. We have to touch, feel, taste what it would feel like to have what we want. Finally, we should have gratitude. This is another powerful catalyst for change. We should be grateful for everything we already have, as well as everything that is going to come into our lives. Every day we should think of what we are grateful for.

If we think in this way, we will be attracting what we want int our lives. Our thoughts create our reality.

Of course, what I want most is Nathan’s happiness. I want him to experience happiness and freedom.

I dare to ask for Nathan to gain mobility and speech. I dare to imagine him running to me, hugging me, kissing me, saying, “Mommy, I love you.” Yes, I have the audacity to believe he can gain these skills. And every day I will ask, believe, and accept.

In the meantime, here he is, learning about Cause and Effect:



Bday party videos









Nathan’s 51st bday

…well…not really….but if you’d asked him, he would’ve SWORN it was his birthday yesterday :-)

It was grandma’s birthday yesterday but of course he was the center of attention. I think you can see that here:

He had a blast and so did grandma. There are more photos here: Grandma’s Birthday

Looking at him yesterday, I am convinvced that all of our efforts this week were so worth it. In just one week we saw improvements. I could really tell from looking at the photos. He has more moments of holding his head and trunk better. You can see how well he’s sitting in this photo:

It almost looks like the pillow behind him is holding him up, but it isn’t. It’s just there in case he fell back. He was basically holding up his head and using partially his trunk and partially his arms to keep himself sitting up.

That’s not something he would’ve been able to do a week ago.

We’re excited! If he can improve in just a week, imagine how he’ll improve over weeks, months, years! It’s so encouraging to know that we made the right call about pushing him with his therapies.

We also noticed that the crying and screaming wasn’t as much physical pain as it was a tantrum. It must be such a big change for him, to go from sitting around most of the day without having to make much of an effort, to having 3-4 hours of intense therapy every day. I think he was emotionally and physically exhausted! But of course anyone would be.

The key for us is to understand that and to give him the space to be tired, while still pushing him to work hard and improve.

On friday, we put him on the incline plane, and he basically just laid there and refused to move. He was DONE. I told him I wouldn’t pick him up until he reached the bottom. He screamed for 10 minutes, turned beet red in anger, but eventually figured out I wasnt’ going to give in, so he scooted himself down! I celebrated after I picked him up and made a big party, and he was happy as can be right after.

Thanks to everyone that’s been cheering us on, we really appreciate it!