More on Stem Cells

Usually when we go out to dinner with Nathan we don’t worry about moving things out of his reach, like most parents of toddlers do. We leave the fork, knife, plate, cup right in front of where we’re feeding him. Last week we realized it was time to start changing our ways. As we were eating dinner, Nathan reached out, grabbed a cup of water, and spilled it all over himself and his dad! We were ecstatic to have this normal parenting experience. It was a first for us. Until now, Nathan has never been able to do this. He’s never been able to reach out and grasp objects. Until now, his hands have always been kept in tight little fists, and if he wants to reach for something, he instead contracts and brings them closer to his body. That was before he received stem cell therapy.

In the last two weeks, Nathan has showed us many new and emerging skills.

Nathan is now able to reach for and grasp objects. He keeps his hands open and relaxed most of the time. He is now able to coordinate reaching for an object, opening his hands, and holding the object in his hands.

My mother has been trying to teach Nathan how to play with a toy xylophone since he was about 6 months old. He has never been able to do it. On Saturday, after all these months, Nathan can hold on to the little stick and bang the keys!

His speech therapist was shocked when she worked with him last week. Usually, when he eats something, over 50% ends up all over his face, as he has a tongue thrust motion that makes the food come out of his mouth. When she fed him last week, only about 10% spilled! He is chewing the food better, moving it around his mouth, and moving his tongue better. In the past he ate with a suckling motion, like a newborn. He now knows that he has to chew his food and move it around his mouth before he swallows. He is barely gagging.

I heard him say “more” 3 days after we came back from the stem cell treatment. That’s the first full word I hear him say! He’s also babbling and saying lots of new sounds, like “ma” “ba” “da”. People have told me they’ve thought they’ve heard him say words like “dog” and “elmo”, but they are pretty unclear so I’m not going to claim he’s saying words just yet.

At physical therapy, he is doing lots of new things, like controlling his head better, controlling his trunk better, and better strength and control when standing. He is learning to pull his head down instead of maintaining it hanging or arched backwards. He is learning to fix its alignment when his head falls off to the side. He is also kicking his legs better when he is prone on the ground and is very close to learning how to army crawl! When he went to hippotherapy, they couldn’t believe how well he was sitting and holding up his head and trunk; usually he requires “max assist” and his body needs to be fully supported, but at his last appointment they just had to hold him from his lower back.

Finally, he is learning words and concepts very quickly. After many months of trying to teach him body parts, he now knows eyes, nose and mouth. If someone puts their face close to his hand and asks him, “show me my nose” or “show me my eyes” he can put his hand on the appropriate body party.

We have seen all these changes just 2 weeks after the stem cells. We are excited to see new developments from this treatment, and from subsequent treatments!

End of week 2 at NAPA

The little man was so tired after the end of his 2nd week at NAPA that he passed out at 8pm.

I am so proud of him for how hard he is working. He has tolerated 4 hours of therapy every day for the past 2 weeks with little complaints.

So how is he doing, you might ask? Is he improving?

Again, my answer is similar – yes he’s improving, no it’s not drastic. Some of the changes we are seeing:

* Improved head control
* He is able to bring his hand to his mouth and control it better
* He is reaching and grabbing for toys and things all the time now
* He is able to open his hands when reaching for things and to actively grab and hold on to them
* His trunk is stronger
* His legs are stronger and he is standing better
* When put on his belly, he understands the pattern for crawling, but just doesn’t have the strength yet

I think it’s a combo of the stem cells and the intensive therapy. We are really excited about how well he’s doing.

Today was my birthday and it was a really nice day. Nothing special, but it was nice to spend it with my boy and have the warm, fuzzy feeling of seeing him improving and knowing I’m doing my best for him. That was my birthday present – receiving the gift of being Nathan’s mom. It’s a gift that keeps on giving 🙂

I’ll post some pics and videos next week.

Our Smart Boy…

Today at NAPA, the therapist mentioned, offhand, how much more accurate he’s gotten with his body parts…I’m like, what do you mean? He said that on Friday, when he asked Nathan to touch his mouth, nose, eyes, ears, it took Nathan a little longer..while today he did it right away.

I almost plopped backwards..I was like, what?? I had no idea Nathan even knew!!!

So he said that if he lays down within Nathan’s reach and asks him to grab specific parts of his face, Nathan can do it, and does it accurately every time! He had thought this was something Nathan has done with us before, so he was all excited when I told him it was a first.

For you parents of non-special needs kids, this is HUGE for us! For you parents of special needs kids with severe physical delays, you understand how exicting this is!!!

I love those stem cells!